tag:blogger.com,1999:blog-51272460763982035642023-11-16T09:04:41.122-08:00Frazier's Full House Farm and the Adventure of Addy's HeartWe are a family of 5 and live outside of Nashville on a little farm that keeps us very busy! Our oldest is Hunter, who is 11 years old. Maci is stuck in the middle at 7 years old! Our baby girl Addy has complex CHD with Tricuspid Atresia/Hypoplastic Right Heart Syndrome. She is now 3 years old, has had 3 Open heart surgeries, and is totally perfect! We are on a heart journey where we love her half a heart with our whole hearts! Follow our family through this crazy thing called life!Unknownnoreply@blogger.comBlogger39125tag:blogger.com,1999:blog-5127246076398203564.post-53308685871909812042014-05-21T20:48:00.000-07:002014-05-21T20:48:04.116-07:00Another checkup "passed" with flying colors, how blessed we are! I just logged onto here to post a very happy update of how Addy's cardiology checkup went today and realized I had not posted since October! Although time flies when you're having fun, our time has pretty much flown by just from being ridiculously busy! I took a temporary job teaching nursing at MTSU for the spring semester, but after this semester we decided that it took me away from my family too much and would not return in the fall. I realized within the last few weeks that Addy will be 4 in just a few months! This makes me want to fall to my knees with thankfulness that we have been given such a wonderful path with Addy so far. I am also humbled because we have been chosen to be Addy's parents and given this unique perspective as nurse practitioners that allows us to really understand and empathize with the patients and families we work with every day. While we never know how many days or years we will have with her, we try not to live in fear of the unknown and just cherish each day. That is not a hard thing to do with such an amazing child as Addy. She astounds us daily with her intellect, compassion, humor, and, resiliency (we aren't at all biased!)<br />
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It really is a different experience each time we have a cardiology visit. Today it was just Addy & I for our appointment. Heath was at work receiving text & picture play-by-plays of each part of the visit. Last year, at 2 1/2 years old, I can remember a meltdown over having to lay down for an EKG and making valiant efforts to try to get her to participate in walking saturations (run up and down hall x3 and then check oxygen saturation) that did NOT happen because she really just wanted mommy to carry her and was not going to participate in anything that included walking on her own two feet.<br />
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Today was a different story! She did everything that was asked, including the walking saturations (with mommy of course) and acted like an old pro! She knew every cue point of when to ask for stickers, snacks, and prizes....and even explained her special heart and white blood cells to Dr Kavenaugh! That being said, of course I had to document the whole visit with pictures! I'll give you the final reveal at the end of all these pics showing our very long day!<br />
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ2gJHZUgAr791u2Z5Zb0z6EO2ZWqkovbwToo6N99ykXw4P0vLYecuCldUW_kNw1LXZLR0mg-luukOCSCf9rQWeRTTf7w1Vz-02XoFeKkSBLAoibD2xuHrSQSNb41TmdpTtwzKfdfNFJxN/s1600/10364449_10203834886297710_871619811_o.jpg" height="400" style="margin-left: auto; margin-right: auto;" width="225" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Selfie with mommy bc she was "a little nervous"!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"Mama Anne" always wants her own pictures too!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rockin' her barely visible hero scar, or "zipper"!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Fascinated by "hey, there's my heart beat!"</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bored by this time...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Wired for sound with her 12 lead EKG</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Every good girl needs goldfish & apple juice!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">STILL waiting....but we know Dr. K is a very busy woman!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Counting all her sticker prizes!</td></tr>
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And the results are...her heart looks wonderful! Her one single "pump" is doing all that it can and should! Her function is great, both pulmonary arteries growing as her body does, and no signs of clots or any narrowing, regurgitation, or any of those other things we hope to avoid! Her oxygen saturations were 94% at rest and 86% after 3 runs down the hall & back (good thing they didn't check mine!). Her EKG was perfect, and blood pressures were all equal. We couldn't be happier, so this means we can follow up in another year! </div>
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The rest of the appointment when Dr.K finally made it back into the room was spent discussing everyday and long term management for Addy as a single ventricle. As of right now, the plan will still be to close her fenestration sometime around Kindergarden. She will stay on Coumadin and I will continue to give thanks to the CoaguChek Gods that we have a home INR machine to keep that in check! She will continue to be at risk of clots & microemboli both because of her history and physiology, but we will deal with that if and when it ever happens. As of right now, Vanderbilt isn't doing routine liver screening (liver biopsies every 5 years) for the long term hepatic complications, but we'll continue to watch some of the other institutes that are to see what those results are and if it's worthwhile as she grows. As a single ventricle, she is also at increased risk of arrhythmias, and many adult Fontan's do wind up with pacemakers, but as of right now her heart is moving in perfect lub-dub synchrony! Our one concern is still some intermittent cyanosis and shortness of breath, for which we'll be heading back to ENT for most likely some adenoidal tissue lasering to hopefully help that. Otherwise, we have nothing to complain about and are overall thrilled and the best news of all is that we get to just let her be a kid and pace herself (which is probably a bad idea!) in her activities. </div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-28540767024021937872013-10-22T20:45:00.002-07:002013-10-22T20:45:46.903-07:00A Friend Remembered, Every Day A Blessing <div class="separator" style="clear: both; text-align: left;">
<span style="color: blue;">"My flesh and my heart may fail, but God is the strength of my heart and my portion forever" Psalm 73:26</span></div>
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Some days I just want to freeze time. You guys know what kind of days I'm talking about. Where you just decide "I'm doing nothing productive today except blowing bubbles with my 3 year old and playing with her". Some people may have these days often enough, but the truth is that this doesn't get to happen very often around my house. There's always dinners to make, clothes to clean, homework to do, and about a million other things that occupy the time with a 5 person household. And my three year old knows just how to lay on the guilt trip that makes you want to drop everything and comply with her demand of the minute. So that's just what we did last week. It was just a "Mommy & Addy Day". I cherish those days, definately more than some, but still not as much as others who would give anything to have one more of these moments with those they've lost.<br />
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Today a helicopter went down that was carrying members of the LeBonheur Pedi-flite transport team. All three on board were killed. The respiratory therapist, Denise Adams, was a close former coworker who always managed to light up a room with her smile, make your day a little brighter with her kind words, and make you feel like you could sit down and share your darkest secrets with her over a cup of tea. She had three beautiful children who didn't get to say goodbye to their mother, yet they know how much she loved them. </div>
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This tragedy hit so close to home. Heath and I have both contemplated over the last several years job opportunities that have arisen for flight nursing. It's a dangerous job that all who embark on are aware of the risks. God led us down a different path, but it could have very well been one of us. Why He chooses to take some so early, while others live long wicked lives is difficult to understand. I take comfort in knowing that Denise knew right where she would go, and she watches over all of her friends and loved ones tonight and knows how much she was loved. I pray for her family most of all. Because even with the understanding of the greatest eternity, it doesn't ease the pain of today or tomorrow. I pray that their faith guides them through the grief, helping them through each moment of pain they will endure with this loss. </div>
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It reminds me that for all of the moments in my life that I worry about Addy's future or losing her, in an instant I too could be gone. I want my children to remember the wonderful and fun times we had, not just the times when I was tired or too busy "doing mommy" to get to enjoy "being mommy". None of our tomorrows are guaranteed, so although we worry about our chronically ill child, I rejoice as well. I hug her a little tighter and a little longer, and take as many kisses as she will give. I count to 10 (10 times over) and try not to get frustrated when she is trying to help and makes a bigger mess, because "I'm big" and "I can do it, mommy" are precious words to my ears. I smile at her insistence of wearing her pink cowboy boots everywhere with every outfit, and think of myself at that age instead of trying to convince her to change her mind. I say, it's ok, you can have a moon pie before dinner and fruit chews after just because it earns the biggest smile and "Yay!" that I've seen all day. There are times when I'm tough, sad, tired, irritated, exasperated, and a slew of other negative emotions while being a parent. But that's not what I want to be remembered by, or what I want to remember when I look back at these times. Instead, we'll just blow bubbles, draw on rocks, collect eggs, and chase chickens....all the while making precious memories. </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Bubbles never cease to be amazing to a 3 year old!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Working hard at those pulmonary skills!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Peggy says "is this kid ever gonna blow a bubble?"</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHRf8XGeUQhV4RZ4nEFz45gUYroiQlnyanMxlcSlgFbZeagtiodItZtdGc_guZFwD15Eum7CWfrcOxq8g1snF13ODyR1JujyXjhAsZlcRQxbo4dn-rzSayae19f1JBXEc-aCN1wpGT5B29/s1600/DSC_0767.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHRf8XGeUQhV4RZ4nEFz45gUYroiQlnyanMxlcSlgFbZeagtiodItZtdGc_guZFwD15Eum7CWfrcOxq8g1snF13ODyR1JujyXjhAsZlcRQxbo4dn-rzSayae19f1JBXEc-aCN1wpGT5B29/s640/DSC_0767.JPG" width="484" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Love the look of joy on her face!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG9TZEjt4xHdD2b26SgQF6G39aQCwVhfZ9UMi_8vyBB91DK9xJrxU2G9Q2_82ucGLOcalQSsMrTWBTZEjsZ9nTqW387kIgOo0mADDUMJMmEP06xjzCXeq9KbUmGP5MAagmLLjFdnxrJQ8r/s1600/DSC_0772.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG9TZEjt4xHdD2b26SgQF6G39aQCwVhfZ9UMi_8vyBB91DK9xJrxU2G9Q2_82ucGLOcalQSsMrTWBTZEjsZ9nTqW387kIgOo0mADDUMJMmEP06xjzCXeq9KbUmGP5MAagmLLjFdnxrJQ8r/s400/DSC_0772.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">How wonderful to see her be able to run without huffing & puffing!</span></td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnj-eJqH4HU9oreeAnvViSFRgDFDilq8Ub0bl-5AjB4F0_iq2k5oULAtWXsGwq40b5R72rtBfJHiDPSmsCE_Y28UWjWfqsXhnDqdiRtqsV-Sfh7Oo76tPgSumIdHfnJvYbFimTRaf4mSvH/s1600/DSC_0785.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnj-eJqH4HU9oreeAnvViSFRgDFDilq8Ub0bl-5AjB4F0_iq2k5oULAtWXsGwq40b5R72rtBfJHiDPSmsCE_Y28UWjWfqsXhnDqdiRtqsV-Sfh7Oo76tPgSumIdHfnJvYbFimTRaf4mSvH/s400/DSC_0785.JPG" width="241" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-size: small;">"Caulking the Rocks" as Addy says </span></td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEf4ENJ3ZMbQjlfGtGHA8MV7RZgA3Lyx2RY5JF_MWccXq9n8LvfAqanHgah1c5Lvtez8muZF_vvoKFPGyPl6z8WTPw4f58SDHESkB1gNmaMmTWntlkQ3g4qUvrpIreEJE4aJ4dtqDyhEoS/s1600/DSC_0846.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="368" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEf4ENJ3ZMbQjlfGtGHA8MV7RZgA3Lyx2RY5JF_MWccXq9n8LvfAqanHgah1c5Lvtez8muZF_vvoKFPGyPl6z8WTPw4f58SDHESkB1gNmaMmTWntlkQ3g4qUvrpIreEJE4aJ4dtqDyhEoS/s400/DSC_0846.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-size: small;">Bound and determined to catch a chicken....they are just toying with her though, she doesn't stand a chance!</span><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="font-size: 13px; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8u4-wj9is2WvWy-6kashDWsq1KP4wMUThDYesOhsoTvdVDMT6ZVg1WtBMuIx0lauhYUQaM5yc6oABVTIRYftkbpjKc9eiuOFtcfOGJ9tj8IcrM9e9M6GOVo7tn4flO8w2xlD4JfAf4gav/s1600/DSC_0822.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="352" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8u4-wj9is2WvWy-6kashDWsq1KP4wMUThDYesOhsoTvdVDMT6ZVg1WtBMuIx0lauhYUQaM5yc6oABVTIRYftkbpjKc9eiuOFtcfOGJ9tj8IcrM9e9M6GOVo7tn4flO8w2xlD4JfAf4gav/s400/DSC_0822.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-size: small;">Our best girl, Cassie, loves her some attention- what a camera hog!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhCB3EfI1rGVz-LetGwq-p-cJsUYY1b4R0X-qF1-Qfy0taBVMm8dKW2MxTqPNQJa7x6W_Kh-MjGIMub80co-xbuNK_8S25H1IHbl6ndRx84DsROyH3Fc0ilU_hLkMhSoSESWRyK7psRuwk/s1600/DSC_0797.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhCB3EfI1rGVz-LetGwq-p-cJsUYY1b4R0X-qF1-Qfy0taBVMm8dKW2MxTqPNQJa7x6W_Kh-MjGIMub80co-xbuNK_8S25H1IHbl6ndRx84DsROyH3Fc0ilU_hLkMhSoSESWRyK7psRuwk/s400/DSC_0797.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">I think they are sharing secrets!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUNt6SmrgZFe-y8CO5IVNWDtASqtkssbIvyd9gSan3tuNuI4toZWrIQZfsRRyPwUSkE4ibFjrSb0b4PuarIhC-NxnvSWfuwhCVqVYcvmuzVYaEJ7JkVZbBMc7Vxo-Kb0t-HvfYeId_l_Py/s1600/DSC_0824.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="246" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUNt6SmrgZFe-y8CO5IVNWDtASqtkssbIvyd9gSan3tuNuI4toZWrIQZfsRRyPwUSkE4ibFjrSb0b4PuarIhC-NxnvSWfuwhCVqVYcvmuzVYaEJ7JkVZbBMc7Vxo-Kb0t-HvfYeId_l_Py/s400/DSC_0824.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Addy loves her animals, nothing like a little love from Cassie!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibic5rTqCOY4sPoglDrGM9_79LMCQ34ED2JRaAYpQaFXTmHYpFWNhmNudHlALb5t3qE1FhbeHhcADFEapM90WxPHaoF55ylGiTxUu2-sVyQpIhpjz7Y9lqX19u-gy2QJyP4UgHKBfXkg5r/s1600/DSC_0856.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibic5rTqCOY4sPoglDrGM9_79LMCQ34ED2JRaAYpQaFXTmHYpFWNhmNudHlALb5t3qE1FhbeHhcADFEapM90WxPHaoF55ylGiTxUu2-sVyQpIhpjz7Y9lqX19u-gy2QJyP4UgHKBfXkg5r/s640/DSC_0856.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Last but not least, if you've never seen a bunch of chickens haulin' drumsticks to the sound of corn in a can.......</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2klglK7iZspP2GrR_S1BBttCyLZo_8B8CnhJrl_k-fD5eBvQVCoE8u_pVaof0NLsCekZj6X31QlIZp-YxUM8vrz3SKSeOX7pN5e2-aSjK9pmJzkqDHxwB-R4hSHYAE8Cxo_ZzrrqPT_e5/s1600/DSC_0854.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2klglK7iZspP2GrR_S1BBttCyLZo_8B8CnhJrl_k-fD5eBvQVCoE8u_pVaof0NLsCekZj6X31QlIZp-YxUM8vrz3SKSeOX7pN5e2-aSjK9pmJzkqDHxwB-R4hSHYAE8Cxo_ZzrrqPT_e5/s640/DSC_0854.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">......It really is some funny Shit! The only thing more funny you'll see on our farm is the fainting goat hit the ground when you honk the car horn at him....I'll save that for next time!</span></td></tr>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-88624928060298574432013-08-25T15:51:00.000-07:002013-08-25T15:51:36.676-07:00Giving All of Our Hearts to this Wonderful Three Year Old!It's hard to believe we just celebrated Addy's 3rd birthday. We had a great turnout and Addy had a blast. It was Doc McStuffins themed and she got to share the spotlight with me for my graduation from NP school. Everything these days is Doc McStuffins- oh the irony, I'm fairly sure our little medical miracle is going to become a doctor at the rate she's going!<br />
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I am so thankful for every birthday, occasion, and day that we never thought Addy would experience. Every year this occasion seems to get me to thinking about the things that we were told and how we felt before we welcomed Addy into this world. So many of them were not positive. So much has changed in the last 3 years. We still have those crummy days where I just want to sit down and cry (and I might). But for the most part, the good now outnumber the bad.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PMjWCyVPew2yz6YHHnpu_HzGw2W3hLKogES57ffDyvaNHA6-nC7qAa-tjGpB7SVUArQEUwmaZWSbMhqhFguC29VC6dhCzdJYHPcTkAIbEmGJnQww4Cbj4AsxLkQcTyDGyfmEoYh_xAUO/s1600/DSC_0582.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PMjWCyVPew2yz6YHHnpu_HzGw2W3hLKogES57ffDyvaNHA6-nC7qAa-tjGpB7SVUArQEUwmaZWSbMhqhFguC29VC6dhCzdJYHPcTkAIbEmGJnQww4Cbj4AsxLkQcTyDGyfmEoYh_xAUO/s400/DSC_0582.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma didn't do too bad on decorating the cake, poor ole Doc is a little sideways!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTcJef8RQLn9szimNhi1LGlRkgh2ms4pJyV1BOPeICHeSeealnXyeKyaFYJboIty4nSbl0M5rNixehZ1kpDJdQqmcuGk9wIaD1h38BN_P5FDlwTOGQY1-acwzRVQUuWuC2omDM3DzlRS_U/s1600/DSC_0585.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTcJef8RQLn9szimNhi1LGlRkgh2ms4pJyV1BOPeICHeSeealnXyeKyaFYJboIty4nSbl0M5rNixehZ1kpDJdQqmcuGk9wIaD1h38BN_P5FDlwTOGQY1-acwzRVQUuWuC2omDM3DzlRS_U/s400/DSC_0585.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Birthday to Addy, hoping all her birthday wishes come true!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihf1K2ypSriw7IeOy5afqpSqye6tx4OKJ6d4DODSEKdUbXxJz2qlRWP_3gZSXua4CeWBdB65n4Ojqs3V1IdggWhuNNr_J153LaK3hnQ2uzW_wckonKATt_uEMcivQsHurhNnUby_hdJY_k/s1600/DSC_0587.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihf1K2ypSriw7IeOy5afqpSqye6tx4OKJ6d4DODSEKdUbXxJz2qlRWP_3gZSXua4CeWBdB65n4Ojqs3V1IdggWhuNNr_J153LaK3hnQ2uzW_wckonKATt_uEMcivQsHurhNnUby_hdJY_k/s400/DSC_0587.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It took a little help from behind but we finally got those candles blown out!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjoNVMDvG4dc30ayZ-QlTE6k7t0004MupysRyt9JEFDoPHDfuWqgrpTTK4c3RM82-QH1Fat0FMC0G4T-ibUj1QNjHMVxul43az7OyjHlB38jnePs0YyEg5NG0bPnTzobUzn9vGOTdtRfw/s1600/DSC_0593.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjoNVMDvG4dc30ayZ-QlTE6k7t0004MupysRyt9JEFDoPHDfuWqgrpTTK4c3RM82-QH1Fat0FMC0G4T-ibUj1QNjHMVxul43az7OyjHlB38jnePs0YyEg5NG0bPnTzobUzn9vGOTdtRfw/s400/DSC_0593.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This girl is not going to skip on the cake, it's the only reason she showed up!</td></tr>
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I remember wishing that Addy didn't have to be born. Let me clarify- Never at any moment did I regret our pregnancy or consider any alternatives. I was so terrified of the chain of events that would certainly or probably happen after her birth. I just wanted to keep her in my belly forever, safe, never have to face the inevitable of reality. Maybe if she stayed in, the doctors would have been wrong. I didn't trust God's will, only that I wanted MY WILL to be done- and that was to have a healthy baby. <br />
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Now I look at Addy and sometimes for a few minutes or even hours, I forget the reality that she is living with half a heart. For most of the time, she is a perfectly normal 3 year old. She runs and jumps like a daredevil, talks back and says "no" to everything I tell her to do, and becomes overly emotional when she hasn't had a nap or got up too early. In fact, most of the time it's the "normal" 3 year old behaviors that remind me that she's not normal, and that we'll never forget that. It's innocent behaviors or things that are a normal part of our routine that probably would not be considered your every day events to most people. <br />
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- She plays doctor and her knowledge of real-life medical procedures is just way too advanced for a 3 year old- right down to putting the tourniquet on for a blood draw, <br />
- She falls down a few steps (after being told to stay off of them) and my heart jumps as we do the quick run-through of where she hit and how much she is going to bleed before she clots.<br />
- As we get dressed to go to town she asks where we are going and if she is still done with her blood draw for today<br />
- I drop her off at church daycare to play with her friends and remind the volunteers that she is wearing a medic alert bracelet and she is on Coumadin.<br />
- She gets a little out of breath when running and I briefly evaluate her respiratory rate, work of breathing, and whether she recovers or becomes cyanotic- all without ever saying anything to her or stopping her from playing like any child with a whole heart. <br />
- She starts to plug a finger into a light socket next to where she sits on the counter while I fix her hair and I have a mini panic attack as I think of how a specially wired heart would react to a little "short circuit" that I'm sure most of us experienced at least once as a child (I know I did!)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6055qQimikW0rpQMNHpf7lRgrmAJmt2stKxF6sAOIzl14Xjv9kim0ju52g79C514v7uxTJggkAoDGEWnRnq416ONmZNuN9jrFmD3uYkrMYRBdYueG_8zowLWumVkehjrNxHaq5_tfAIT3/s1600/DSC_0594.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6055qQimikW0rpQMNHpf7lRgrmAJmt2stKxF6sAOIzl14Xjv9kim0ju52g79C514v7uxTJggkAoDGEWnRnq416ONmZNuN9jrFmD3uYkrMYRBdYueG_8zowLWumVkehjrNxHaq5_tfAIT3/s400/DSC_0594.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We pulled out the walker for her baby cousin, but Addy thought it made a perfect car for her!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYQ6-RLRy8ZIkcuBQHf9IZL9lV7rTFwojVO_74oJVTPch1VpY_wYxzuUa1-nyVmm42PKp6EnxuhHrx2-kWVpsLQ_KIOp95-cybvju1h2rSeVJHGXt3SYy8R6bwV3bWV4c2jDyN2hBWFW6B/s1600/DSC_0604.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYQ6-RLRy8ZIkcuBQHf9IZL9lV7rTFwojVO_74oJVTPch1VpY_wYxzuUa1-nyVmm42PKp6EnxuhHrx2-kWVpsLQ_KIOp95-cybvju1h2rSeVJHGXt3SYy8R6bwV3bWV4c2jDyN2hBWFW6B/s400/DSC_0604.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her first big girl bike, Lord help us all!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Addy playing Doc with her brand new doctor outfit and friend!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Miley looks surprisingly calm about getting a shot from Addy!</td></tr>
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These are the little moments that we live with as heart parents. Although the big bad Fontan that we dreaded for over a year is now through, the uncertainties of the future never go away. I was brought to tears a few weeks ago as my husband told me of a single ventricle survivor that he met recently who was working as a nurse. She is in her 20's with no signs of heart failure or any of the other long term complications that make up Fontan parent's nightmares. Had he not mentioned Addy's heart which prompted her to share her secret, he would have never known that he was looking at a fully grown version of Addy's heart. I remember when we requested "hospital friendly" baby gifts because we didn't know if we would ever take her home. It gave me chills as I was reminded that we really do not know what the future will hold, but I really believe the possibilities are unlimited and optimistic. <br />
<br />
Within the last year, we recently have found a spiritual home at World Outreach Church. Although I suppose I always "believed" in God, I was really more of a bystander Christian. I will admit that I never really understood when people became emotional as they thanked God for opportunities or accomplishments, or how they could really feel like God had a plan by them having painful events in life. I didn't really believe that all things happen for a reason, more than events were random and unrelated to anything spiritual. <br />
<br />
Sometimes in the last year, something changed. As I listened to Pastor Allen's sermons every week, an awakening started taking place. I found myself on the verge of tears as I sat in amazement at how the scripture related to our lives. I really began to believe, and the pieces began falling into place. As I listened to sermons about overcoming anxiety and worry, I found it easier to do when I really realized that what I feared the most of the future was not a bad thing. <br />
<br />
My fear was that we would lose Addy too soon for our earthly standards. This changed when the revelations came along that <b>God's will be done- and it already is</b>. In fact, God's work was evident long before Addy was ever born, or even conceived. <br />
- After I graduated nursing school, I was drawn to pediatric hearts. Although the hospital I was at initially didn't have a dedicated unit, I jumped at the chance 3 years later when they opened one to follow that path, giving up the comfort zone of the unit I was at to learn a totally new and scary specialty.<br />
- I cared for a patient with CHD whose family would later go on to become some of our best friends and some of our biggest supporters when we were diagnosed with Addy <br />
- Heath had been an adult ICU nurse for years, then came to pediatrics. When we were traveling, he initially hated working in pediatric CVICU, but then decided that when we moved to Nashville he really did love them and that he was being called to work there. We were both working in the unit where our child would be cared for when we received our diagnosis. <br />
- The dear friend who threw my baby shower and supported us the most the first year would later go on to have her own child with CHD, linking us as sisters for life as I helped her cope with the diagnosis and aftermath of emotions. <br />
<br />
God's will is that she was chosen to have this heart and we were chosen to be her parents. Addy has had her own unique experiences that no other child will have in the exact same way, some easier and some harder, that will shape her into the woman she will become. Our preparation began long before Addy was born and so many of our interactions were in preparation for the future. Death is only temporary and marks the end of an earthly journey, but her glorious and eternal spiritual journey will just be beginning. Once I finally believe this, I stopped fearing tomorrow. Yes, sometimes I hurt inside when I watch my child endure painful procedures like the weekly blood draws requiring multiple sticks. But then, we are given the blessing of watching her blow out her birthday candles. My daughter's heart is just as God intended and our earthly comprehension cannot even begin to understand His reasons, but in Him I trust. <br />
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<tr><td class="tr-caption" style="text-align: center;">One piece of cake wasn't enough, sneaking some more after everyone left!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7j8pY9DcH9aKzXFIyEaqMmPREpVA8tPgvj2joeKko_M866hIpImz5ykx-kMfZ1WC92gJmSh3wxtV66qCWdmdJnFlz2V7lVU3xQwuITTPBciObMqi6ufKU84n9DxvOTZf3dK0rWGDp-srQ/s1600/DSC_0614.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<br />
The first time I heard Matt Hammitt sing "All of Me" about his own journey as a HLHS parent, I wept. He put it into words so much better than I ever could have.<br />
<div style="text-align: center;">
<span class="clearBoth" id="ctl00_ctl00_cphMain_cphMiddleColumn_DropZone1_columnDisplay_ctl00_controlcolumn_ctl00_WidgetHost_WidgetHost_widget_lblLyrics" style="display: inline-block; width: 100%;">Afraid to love, Something that could break<br />Could I move on, If you were torn away?<br />And I'm so close to what I can't control, I can't give you half my heart<br />And pray He makes you whole<br /><br />(Chorus)<br /><b>You're gonna have all of me, You're gonna have all of me<br />'Cause you're worth every falling tear, You're worth facing any fear<br />You're gonna know all my love, Even if it's not enough<br />Enough to mend our broken hearts, But giving you all of me is where I'll start</b><br /><br /><b>I won't let sadness steal you from my arms, I won't let pain keep you from my heart<br />I'll trade the fear of all that I could lose, For every moment I share with you</b></span></div>
<div style="text-align: center;">
<span class="clearBoth" id="ctl00_ctl00_cphMain_cphMiddleColumn_DropZone1_columnDisplay_ctl00_controlcolumn_ctl00_WidgetHost_WidgetHost_widget_lblLyrics" style="display: inline-block; width: 100%;"><br />Heaven brought you to this moment, it's too wonderful to speak<br />You're worth all of me, you're worth all of me<br />So let me recklessly love you, even if I bleed<br />You're worth all of me, you're worth all of me</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-28912932700038355882013-08-16T21:17:00.001-07:002013-08-16T21:18:26.918-07:00Those gut feelings, emotions, and back to school!<div class="separator" style="clear: both; text-align: center;">
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There are days when I am overwhelmed by the feelings of my daughter. This is one of them. As some of you know we have had our ups and downs with the Coumadin roller coaster, and those continue. Poor Addy went from having her first UTI and needing 10 days of antibiotics, to then having a horrific diaper yeast rash that proved to be resistent to all topical/over-the-counter medications and required 10 days of an oral antifungal. Enter Coumadin vs. Fluconazole interaction....Mommy knew. I really did. Not only did my educated nurse practitioner brain know that these weren't going to play well together, my mommy gut did. All you mothers out there know what I mean, the gut feeling that you were able to call from a mile away that no one wants to acknowledge. Sometimes I really hate being right.<br />
<br />
Soooo, we start on killing this yeast beast, and we checked our INR last Friday....luckily we got it in 1 stick, 2 weeks in a row! INR- 5.4- ok, well we'll hold for a few days and then restart back and recheck in a week. I'm really getting tired of hearing the words "<u>insert instructions for adjustment, </u>and recheck in a week". *sigh* ok, so we happily go on our way killing that yeast and finished it this Tuesday. Technically we were supposed to recheck on Sunday but that won't happen and I work Mon/Tues so Friday it is, because Mommy's gut feeling is also saying that sooner is better than later but hopefully the number is already coming down. I guess about Wednesday the gut feeling really starting getting annoying, as I started noticing that Addy was having little bloody noses, which she has had 4 days now. She has never had a bloody nose spontaneously...ever.<br />
<br />
Off we go this morning to our friendly Kid's Express. Gosh I love those girls, but I'm pretty sure they cringe when they see me and Addy coming every week. I mean, their ex-bosses kid coming in for blood draws almost every week- and they have to get a venipuncture on a screaming 3 year old. Haha, bless them, I'm pretty sure they rock-paper-scissors to decide who has to stick her but they are so great to us. No matter how often we come, she always gets as many stickers as she wants, is showered with praise for a job well done, has her own Child Life best friend/play mate, and is rewarded for her traumatic experience with a prize. Unfortunately this week didn't go as easy and it took 4 sticks to get the blood (we have to have EXACTLY 1.9ml for that pesky blue tube). I have started telling Addy when we are going for her blood draw because I think she's getting to the age where she can begin to prepare shortly before and I don't want her ambushed. She does great with the prep stage, but she is over the execution stage. She is getting great at the first stick, but after that it kind of goes downhill. <br />
<br />
She tries to be brave for the first stick. Only a few tears and screams until the blood just doesn't come and she begins to lose her patience. How my heart breaks as I hold my sweet screaming child, with tears rolling down her face and her head leaned on me as they have to poke her again. I speak calmly into her ear, "you're such a good girl, you're being so brave", "I know sweet girl, hold still". And she cries back at me "are they done now, take it out?", "no more blood draws?", "did they get the sneaky blood?". And it is unsuccessful. I close my eyes briefly to keep from losing a tiny bit of composure as my heart breaks inside that would let her see anything but calm and loving. So I have to gently tell her that I'm sorry sweet girl but we're going to have to look for that sneaky blood again because that bad ole vein is hiding it. She cries and lays her head on me, I cry inside. She watches TV in between, seemingly all but forgetting about the trauma of just a few minutes before. We repeat the scene again of holding, tears, and a miss- 4 times total. The nurse in me knows this is simply how it must be, but the mother wishes to God that my blood would work instead. I have no anger or frustration for the fellow nurses who have to complete this task. I know that they are all well trained and superb nurses, and how intimidating it must be to have to have to stick the child of 2 PNPs that they have also worked with. They are professionals, they are peers, and they are friends- God bless them. <br />
<br />
We do finally get the blood, and there is a celebration. All prior attempts fading into the past as we celebrate finding that sneaky blood and being done with her blood draw! She receives an extra-special prize on account of her upcoming 3 year birthday in 2 days. Pride overwhelms me as I watch my strong daughter bounce back so quickly, her tears drying and sipping her apple juice as we pack up. That annoying gut feeling is present again as I noticed that she was oozing, and kept oozing- she never does that after blood draws. Not feeling so good. So our INR this week? Well, let's just say they aren't joking when they say those 2 meds interact. Her INR is 7.6, (normal therapeutic 2-3, normal person is about 1 or less). *sigh, more internal tears* We will hold it for 3 days this time and recheck in a week. See you soon girls. Guess Addy will be skipping school at the beginning of the week, her teacher is already terrified she is going to get hurt and bleed- I think I'll avoid giving her a panic attack!<br />
<br />
I know many people may say that Addy might be a tad bit spoiled with gifts and toys. Anyone who is able to go through what heart parents do in a day, month, or lifetime and not want to indulge their child for what they must endure...well you're stronger than me. After we leave, there are only good vibes, Addy happily announces "we're all done with my blood draw now", unbeknownst to her that we will repeat this next week as well. Guilt. <br />
<br />
We go to Party City to shop for her 3rd birthday party which will be tomorrow. On the way there I hear the amazing Christian song by Laura Story "Blessings". This song never fails to remind me that nothing is without a reason and His will be done, not ours. <br />
<br />
<div style="text-align: center;">
'Cause what if your blessings come through rain drops<br />
What if Your healing comes through tears<br />
What if a thousand sleepless nights are what it takes to know You're near<br />
<br />
What if my greatest disappointments or the aching of this life<br />
Is the revealing of a greater thirst this world can't satisfy<br />
What if trials of this life<br />
The rain, the storms, the hardest nights<br />
Are your mercies in disguise
</div>
<br />
More emotions. Overwhelming gratitude to our Lord that He allows us to have Addy each and every day. Amazement at the strength and resilience of my daughter. Pride at her strength to endure and overcome. Thanks for a short memory and fast forgiveness of a toddler. A twinge of sadness for every tear she cries. Thankfulness that He allows her heart and mind to be easily healed and all is but forgotten while we shop for a birthday we thought would never come. Hope for the future. Understanding that we were given this special challenge for a purpose and He has a plan. LOVE.<br />
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<tr><td class="tr-caption" style="text-align: center;">Time to get busy. Daddy brought her banana pudding while we ate lunch with him for a job well done with her blood draw, no tears!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Oh to read her mind right now. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Shopping for her party supplies, so much fun. Yes, we bought these!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ok, so she has a big of sweet tooth but she deserves all the cupcakes she can eat! By this time her boo-boos are the only reminder of the trauma just hours before. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Love this scrunchy face as she saviors her Mike Wazowski cupcake! I could just eat her up, I think she actually looks a little chunky faced in this picture, guess the cupcakes are working!</td></tr>
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I realized as I'm writing this that I totally missed the first week obligatory pictures. This was such a big day for Addy because honestly we never thought she would be able to go to school. We chose just a 2 day a week church based program for her. She LOVES IT! She actually napped on 2/4 days so far, and is doing great! It has been a bit of an adjustment for her to get up so early at 6:30 every day to either go to school or take the other kids. We are working on an earlier bed time but there have been a lot of nightly grumpy attitudes. Addy really enjoys sleeping until 8 or 9 am. *sigh*, a girl after my own heart, but I guess we must all conform to life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOghh7Z7hyphenhyphenvf7YVBDG9VhtHl9dorxyFkK0rkFtImhpnr7XAw5_ehCWa4iuDYwjlgKvwwAKSfeGfq20yROii1PuD5R38_LFR02iJ1ZugWP59W0OWH4TNu9Hro2jcM80fQ_wMS_bZx3RrTF/s1600/CSC_0498.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOghh7Z7hyphenhyphenvf7YVBDG9VhtHl9dorxyFkK0rkFtImhpnr7XAw5_ehCWa4iuDYwjlgKvwwAKSfeGfq20yROii1PuD5R38_LFR02iJ1ZugWP59W0OWH4TNu9Hro2jcM80fQ_wMS_bZx3RrTF/s400/CSC_0498.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy walking her to the car on the first day of school!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All set with her backpack and her Stinky Pinky!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So excited in the car on the way to school!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Getting her painting apron on with her teacher Miss Carrie, forgetting I'm even still there!</td><td class="tr-caption" style="text-align: center;"></td></tr>
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This is also a big year for Hunter and Maci because after much discussion we have decided to follow what our faith is telling us and place them in a private Christian school. Our hope is that they will learn values that we find important, most importantly a strong love of God and Jesus, in a school where they can pray openly, praise Jesus, celebrate Christmas, give to others, and be nurtured in a positive and supportive environment. It will require sacrifices, but we believe- "Our needs are met because He is in abundance", and He will provide. <br />
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<tr><td class="tr-caption" style="text-align: center;">After her year of homeschooling, Maci is so excited about her first day back in the classroom!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Everyone's first day, ahh, time to relax!</td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-65639416178054670902013-07-21T17:06:00.001-07:002013-07-21T17:06:10.956-07:00Summer Days, Ups & Downs!It's been a busy summer, and it's hard to believe it's almost over! I've been busy finishing up school and only have 2 weeks left until I'm done. In the throes of the stress it's hard to realize I'm almost done, but I'm really looking forward to having less on my plate and getting to enjoy being a mom (and human) again! Just working my normal 2-3 days a week will be a relief compared to the last year! Everyone is doing pretty well, we got a good checkup from hematology last month and cardiac-wise we are wonderful. Addy has had a big growth spurt lately as a result of her eating everything in site, and she's up to about 30 pounds now! We have pretty darn good exercise tolerance and we're looking forward to the fall when Hunter & Maci are starting their new private school and Addy is starting preschool 2 days a week. Preschool while anti coagulated will surely be a wild adventure! Here are some of the highlights of the summmer, hope ya'll enjoy!<br />
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Addy had her hematology visit, she really liked the statues outside of VCH! REEACCH, I'm sure most of you recognize these, she is ever the clown!<br />
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We had our monthly INR check in June- and it came back almost twice as high as expected! Addy did happen to come down with a UTI that very same day so we felt like that was the culprit but it was nonetheless stressful! We had to recheck to make sure the rogue reading was correct, then for the next 2 weeks we had rechecks, that required multiple sticks to get thanks to a lab error! Addy is such a trooper, even though she cries during the sticks the girls at Centennial's Kids Express are REALLY GREAT!!! They give her the A-list treatment, and their Child Life Specialist, Caroline, ROCKS! I'm just saying, we have much better luck having nurses stick than phlebotomists that don't even like kids! Addy's favorite part is before the sticks when she gets to pretend she is working, she fits right in! I think I see a future doctor...errrr, probably nurse on second thought!<br />
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<tr><td class="tr-caption" style="text-align: center;">Taking important phone calls with Nurse Felicia</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Checking Child Life Caroline's Ears for Kitties!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Time for Nurse Ashley's IV and blood draw!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Checking her chart for lab results!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgQPiFtig0YwD5wLhkS_5DGHyqGpzHb9QOYbA57dg1FRVf89NxH8q2YhlyofgSUH_F5Vd3PqlkVRrYjSk-zKO8QQIJrGEWIz7Xo_UbvKU75S7x5CFp4qXPyB0q19_S3kyc6HU0KiI23C5/s1600/66.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgQPiFtig0YwD5wLhkS_5DGHyqGpzHb9QOYbA57dg1FRVf89NxH8q2YhlyofgSUH_F5Vd3PqlkVRrYjSk-zKO8QQIJrGEWIz7Xo_UbvKU75S7x5CFp4qXPyB0q19_S3kyc6HU0KiI23C5/s640/66.jpg" width="468" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh no, we better call the doctor!</td></tr>
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The next week at my doctor's appointment, she jumped right in and starting trying to do my vital signs and check my chart! Who says chronically ill children aren't well adjusted, Ha! Even my doc was impressed, she managed computer charting better than most docs!<br />
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Just so you guys realize we don't spend ALL of our time at the
doctor, Addy is finally getting big enough to actually pic up Sweetie
Pie... sort of, poor kitty, she is such a good sport!<br />
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By the way, we did manage to do a few fun things this summer! Addy got a new
backyard pool that she calls her water park, she LOVES IT, she is like a
fish! <br />
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We also took a short trip to Gatlinburg to stay
at Wilderness at the Smokies. While we were there we went to the
Aquarium where the mermaids were visiting! Both girls were enambored
with her, I didn't think we were going to get them to leave!<br />
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And of course we had to take pictures after Mommy straighted her hair like a big girl for church! She is growing up so fast, I can't believe it most days. Stay tuned for more updates!<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-43678707407566298232013-05-22T20:14:00.001-07:002013-05-22T20:17:18.187-07:00New glasses for our girls!Well, the girls got their new glasses! I hadn't realized just how small Maci's glasses had gotten until they pointed out that she was frequently look OVER them instead of through them! She has really grown in the past year, she is turning into quite the young lady, we are so proud of how she has done working hard at homeschooling this year. Please excuse that her hair is in pretty dire need of a trim, Mommy just hasn't had many days off lately that I can make an appt and then actually take her to get it cut! Poor Addy was stuck with the plastic version for glasses, hopefully her head will grow quickly and we can go for something less bulky! I think she looks pretty adorable too, so far just for day 1 she doesn't seem to be falling and running into as much as usual. As a side note, I realized today that none of my posts ever seem to have pictures of Hunter in them- it's not on purpose, it's just that the girls are home with us all day while he's in school, but he's due for new glasses too so stay tuned ;) <br />
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<tr><td class="tr-caption" style="text-align: center;">Our sweet girls, best buds!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">They really need better baby glasses selections!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She still manages for them to slide down her nose, lol</td></tr>
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I thought I'd update on how Addy did after her big girl bed transition. She has done great! She was right where I left her when I went in the next morning, so proud for sleeping in her big girl bed all night!<br />
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My mom thinks perhaps we kept her in her crib so long we just pretty much created a routine of that she stays in bed in the morning and at a night until we get her out. She goes right to sleep at night and so far has stayed in her bed in the mornings when she gets up. The second night, I carried her in there, just like always. Then my two year old just stabbed me right in the heart with her declaration of "LET ME GET IN MY BIG GIRL BED MYSELF!" I have to say, that time I almost cried. So the routine has been altered a little but now this girl runs and jumps in her bed all by herself when we say goodnight.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-45050864947609975552013-05-18T21:51:00.001-07:002013-05-18T21:51:27.719-07:00A BIG GIRL BED MILESTONE....SUCCESS!OK, so I know it's only been mere days since I posted last, but Addy reached a milestone tonight that I just had to write about, probably because I've really been dreading it! Yes, Addy will be 3 in August, and we still had her in a regular crib. She has had full capabilities to climb out whenever she wanted to for no less than a year, but this appeared to be the one thing in life that she actually did seem to conform to the rules without any questions. It was really difficult to accept that it was finally time to give up the one thing that we could still count on to keep her contained for a few sweet minutes when we needed to! However, it was getting a little silly to keep lifting her into bed each night, especially when she could almost climb IN herself! So while Mommy was at school today, Daddy and Addy made some minor adjustments to her bed....<br />
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She was so proud sitting in her newly transformed "big girl bed"! Nobody needs to comment on the side rails that look like they have been eaten by a woodchuck either....yea, so we're the dumb parents who didn't realize they actually sell plastic covers to go over those rails so when you're 1 year old is teething they don't actually bite wood!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6s52IwkUcljJfylTfPHKbsmCqMjesvb10d6_CQIfRiEAT-C_i1Q8-V0_M9jfyZoZZzxz4r6ZZVOpX7TOnuUdQCPgb7ZNvE2WOxw0CKWnu3_fYtEAtdgOsSN3sxrkrOP6LIJusTda6FHX/s1600/44.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6s52IwkUcljJfylTfPHKbsmCqMjesvb10d6_CQIfRiEAT-C_i1Q8-V0_M9jfyZoZZzxz4r6ZZVOpX7TOnuUdQCPgb7ZNvE2WOxw0CKWnu3_fYtEAtdgOsSN3sxrkrOP6LIJusTda6FHX/s400/44.jpg" width="296" /></a> So we finished our before bed routine and I was getting ready to put her to bed like always but before I knew it she had run at warp speed and jumped into her bed like she has been doing it for years! I have to admit it made made me a little bit sad as I realized that an era is over. I have always carried Addy to bed cradled in my right arm since she was a tiny baby. Granted, she used to take up one elbow and now I have to hold her legs with my other arm....but still, since she was 3 months old, bedtime was always the only time she let me carry her like that (usually she's sitting up straight on my hip). But this was our mommy-Addy time when we shared a few last jokes, "piggy kisses" (don't ask), promises of tomorrow, and loving moments before bed. With my school over the past year, some days this is just about all the time I get with her. Usually Grandma or Heath tries to keep her up so I can have a few moments, and then we go through our routine. I guess we'll have to come up with a new way to have our moments, I'm pretty sure my butt won't fit in that toddler bed with her, lol. As I got her all tucked in tonight, she was grinning <br />
like I've never seen. She was so proud of herself and her new "big girl bed" that she was going to sleep in. We talked about how important it was to stay in her bed just like her animal friends stay in their sleeping places until Mommy gets her up in the morning. I locked her bathroom door just, blocked her closet doors, and put away all potential falling hazards--- just in case. She kept agreeing "yep", "stay in my big girl bed", "goin to church when we get up" ...although I wasn't convinced.<br />
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That's about the time that Mommy realized that there is a half of a rail on one side of the bed for a reason....and I should probably put her head at that end so she doesn't fall out...."D'Oh!" As I LOL'd at myself, I then had to tell her that big girls have to sleep at the other end with the rail so they don't fall out. I expected a fight, as Addy is very routine oriented and we are already pushing it...but she surprised me again and flipped right around on her newly positioned pillow, never missing a second! She squeezed her eyes shut in anticipation of her first night as a big girl sleeper. I'm not sure if she really believes that she sleeps like that or not but it sure is adorable, lol. <br />
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And then, UP went the blanket, ON went the Dora nightlight
& Stinky Dare (that lump of a bear in her arm that still plays music)...she squeezes her eyes shut again while peeking out to see if I'm still there as I
whisper "nite nite, I love you"<br />
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*Sigh* She really is growing up, she's not a baby anymore...does this mean she really is a little girl now? Is this about the time that people start getting baby fever again? Let me make it clear that's definitely not happening right now, but I could hypothetically understand! <br />
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All tucked in, I turn off the lights, close the door, turn on our iBaby monitor that allows us to spy on her.....and wait......<br />
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......and then, my child disproved every fear that I had of transitioning her to a toddler bed by going straight to sleep! She sat up about 2 times and then quickly laid back down, and was asleep within 10 minutes. I do believe that I have witnessed some sort of spiritual event tonight. God told us we have to trust in him for his will to be done, and he rewarded us! I consider this nothing short of a miracle! As I reflect on our achieved milestone tonight, I am amazed at how far we have come in the last 3 years. I truly believe that we were given Addy for a very special reason, and that she has great things in her future. Today while we were shopping for a friend's baby gift I remarked that Addy had tons of baby blankets for gifts- at our request, because we didn't really know if we would bring her home from the hospital- but I knew we would need them for our anticipated extended stay after she was born. It really is just a fact that we had to deal with before her birth. We knew the statistics better than anyone, but by golly she was going to have all of her cute blankets and button up outfits while we were getting through that toughest battle of the Norwood. It brings back memories of how distraught and stressed we were. No longer do we have that immense fear that was almost crippling. I have accepted that I will always have that nagging fear in the back of my mind of what tomorrow could bring, but I no longer WORRY and have ANXIETY about it. We tackle each obstacle as it is handed to us and her, and will take it one day at a time. I think that is part of why I have always cherished our before bed routine, because we never know what tomorrow will bring and I always want my last moments of the night with her to be good so that if it's her last, I will always remember her smile and big blue eyes. I realize now that fearing what is most certainly the most awesome existence we can imagine- an eternal life with our Lord, free of the pain of this world, is not necessary. Thy kingdom come, Thy will be done in earth, as it is in Heaven....<br />
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So with that I say good night. Stay tuned for how nap time goes the next few days, it hasn't been stellar even before this so I joyously await the future (rather than anxiously!) And now I just have to awake in the morning before she does.....<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-1767470162814565742013-05-15T20:31:00.001-07:002013-05-15T21:08:05.530-07:00A GOOD UPDATE!I really have to hand it to those moms that manage to blog every day, or at least once or more weekly. I think at least several times a week that I need to write....but then a million other things in life happen and before I know it another month has passed me by! I guess with all I have going on that should be excusable but I still really want to find some way to prioritize some time to make more regular postings, for all 15 of my readers ;) That is, after mommy & Addy do our special time before bed after I've been gone all day at work, clinicals, or school!<br />
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I'm really not a fan of selfies, but Addy recently learned how to make "fishy pouts" and "kissy lips" and she thinks it's super fun to do with mommy and take pictures together!<br />
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Grandma has always been convinced that Addy was going to have curly hair! Her hair was actually really curly that night but the pics really don't show, I think Grandma might just be right! Love this girl!<br />
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So anyway, we had our cardiology followup for Addy today. We actually were due back at the end of March but due to Heath's job change we had to wait for his new insurance to take effect. God watched over us and didn't require Addy or any of our children to require medical care during that time so for that we were blessed. We have noticed over the last month or so Addy has had more cyanotic moments than before and her oxygen saturation has been 91% instead of the 94-96% it was before. Also, even though Addy's heart rate has always been a little higher than most single ventricle kiddos I know, her HR is still 140-160 most of the time, which is a little high to live life at since she is almost 3. Jeez, it's hard to even accept that she's almost 3.... it seems like just yesterday we were starting this helluva journey. I sat in class today listening to a lecture about Pediatric Palliative Care and found it very difficult to concentrate as I thought about how much it pertained to Addy and complex congenital heart defects. I'll actually take this as an opportunity for education that Palliative care really is there to provide an extra layer of support for patients and families that are experiencing any life threatening, serious, or difficult diagnosis or illness. Their goals are to improve comfort, support, assist with pain management, and help make sure the needs and wants of the patient and family are heard. These great ladies really get a bad reputation because people hear the words "palliative care" and it has a tendancy to become a hostile or awkward situation that they are here to say your child is dying or that they want to make them a DNR or limited code. This does not necessarily mean "end of life" or "hospice" (hospice typically anticipates death within 6 months), although they may certainly be included in these stages. Our program at VCH unfortunately lost a great MD recently that headed up our Palliative care program so the remaining NP and social worker now they are primarily focused in Heme/Onc and perinatal patients simply because of the volume of patients is simply all 2 people can handle . Other hospitals around the country are making in common practice to consult them as soon as a serious CHD diagnosis is made and they follow the patient throughout their entire life, every admission, surgery, and event. I never really thought about it but in hearing this lecture it reminded me of several times over the last 3 years we have encountered issues with pain management and communication of the team that had palliative care been involved, I believe could have been handled much better with more satisfaction from us and better care from Addy...and this is coming from the two PICU educated parents who sometimes have more knowledge than the caregivers and whose words are probably heard a little more often than most parents that aren't PICU nurses. So then I wonder, how much better could we provide care if we made this our standard practice for all of our complex CHD families, to have an advocate and someone that has seen us and our child every step of the way. I guess it just reminded me that our experiences with Addy as a heart parent really have changed how Heath and I nurse and act as providers.<br />
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So I kind of got off subject but back to Addy's appointment.....it went great! I think she forgot the whole cardiology visit routine so there were a few tears when she had to lay down for the echo and EKG but once she did and nothing painful came afterwards she was a trooper! Her echo looked wonderful with the best function she could possibly have, no leaky valves, and no clots or narrowing anywhere. We cut her lasix in half again since Addy has been "water hungry" again lately, and we are stopping it in a month. Hopefully we are out of the clearing for pleural effusions by this time! Addy is also wearing a holter monitor for the next 24 hours just to check her tachycardia (high HR) and make sure she isn't having any arrhythmias that could be causing the blue spells or high HR....and it will put mommy & daddy's concerns to rest. She was a trooper and by the end she was chatting with everyone just like always. And the best news was...WE DON'T HAVE TO GO BACK TO CARDIOLOGY FOR 1 YEAR! When we finished in the clinic we went up and visited a few of our favorite nurses, doctors, and nurse practitioners on 7A, the cardiology floor. The men and women that work there really pour a lot of themselves into those patients, so they are always very happy to see happy, healthy, growing patients that don't hate them anymore! We are so thankful for the amazing people that we are honored to work with and have take care of our child. <br />
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<tr><td class="tr-caption" style="text-align: center;">OK, let's get this over with!<br />
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<tr><td class="tr-caption" style="text-align: center;">You want me to do what? Nope, I'll sit, thank you.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Checking out my heart pictures, don't go far Mom!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Look left...look left...OK, look at the phone to the left! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All done, let's wipe this goo off!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I think I prob'ly need to eat after all that!</td></tr>
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It looks like it's finally going to stay warm enough to plant a garden!
Heath had some big helpers to plant the vegetables. For the first time
in my life I saw Addy NOT want to get dirty, and Maci getting down and
dirty with gardening and not mind a bit to be hot and dirty- I was so
proud of her! <br />
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<tr><td class="tr-caption" style="text-align: center;">Maci helping Dad, Addy carefully supervising</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Dad, you planting?...Dad, you planting?...Dad, I plant too?....</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I'll just move the plants around instead of planting!</td></tr>
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The only other news that we have is that Addy is going to need glasses! I have speculated for quite awhile that Addy couldn't see, but my suspicions are validated! Maci is already in glasses but has binocular and convergence problems so she will be starting vision therapy soon to help her with helping to strengthen her eye muscles and hopefully make school much less physically exhausting. Addy apparently has some acuity and depth perception problems so she will also need glasses. This explains why Addy can climb the cabinets like a monkey but she spontaneously falls no less than 20 times a <br />
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<tr><td class="tr-caption" style="text-align: center;">Those baby doll glasses don't fit me!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_LEaEDQ70UM-RowoHo3SYT8N2P9SapfD095z5qLi6YfMUKnqvymKCB_M7SH8AoeDnljgZ4tui81pxyuvkShJauBVNdcbX6k0OECG3ZTSxck1pco-uAeYezo6i6kLiNpqTjpfAoVJqdb9W/s1600/21.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_LEaEDQ70UM-RowoHo3SYT8N2P9SapfD095z5qLi6YfMUKnqvymKCB_M7SH8AoeDnljgZ4tui81pxyuvkShJauBVNdcbX6k0OECG3ZTSxck1pco-uAeYezo6i6kLiNpqTjpfAoVJqdb9W/s200/21.jpg" width="146" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Scuba Steve to the rescue!</td></tr>
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day and trips over her own feet all the time! It just wasn't logical to me that she can do the splits, headstands, and tumble better than most 5 year olds, but her feet are always banged up from her falls. It's been almost 3 weeks and they still aren't in...I'm going crazy waiting! It's sad that our little hobbit had to wear the "newborn" size! I considered the less bulky metal framed ones but decided they would only last about 5 minutes with Addy. So we're going <br />
with the plastic rimmed indestructible ones for now and maybe in 6 months or a year we'll reconsider, maybe by then her head will be a little bigger! We tried every pair on that they had and finally found a style that mostly fit, just had to order them in pink. As you can tell, Addy had a bit of a thing for glasses before so hopefully she'll be more than happy to wear them all the time, lol!<br />
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<tr><td class="tr-caption" style="text-align: center;">Hmm, cute but still a little bit big!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkaLjUM-YTq4AHJ9jEjjj7cqlRPIY4v9Rx42HBZFMdTzzWt5SupnYxfIev3tVpU5e1DoNuD3qETjv-D8ii3qH63EvscZiJ3AOpvjc_ddw4V6Sv72TaZeo3aE8vMO2ZfAo6CphFkBThVQyt/s1600/19.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkaLjUM-YTq4AHJ9jEjjj7cqlRPIY4v9Rx42HBZFMdTzzWt5SupnYxfIev3tVpU5e1DoNuD3qETjv-D8ii3qH63EvscZiJ3AOpvjc_ddw4V6Sv72TaZeo3aE8vMO2ZfAo6CphFkBThVQyt/s200/19.jpg" width="146" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noooo, still too big mommy!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We have a winner, in pink please!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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That's all for now, I apologize for the oddly placed pictures, I have the hardest times getting my pictures to post in the right place!<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-55732848924845639652013-04-10T20:48:00.001-07:002013-04-10T20:48:45.344-07:00Catching up...MIA for months!I was just thinking that it had been awhile since I had posted on Addy's blog, but I didn't realize I hadn't posted since 5 DAYS after her Fontan! That just goes to show how fast time flies when life happens! Things have been phenomenal since then but I'm going to attempt to update on how everyone has been since then! So here goes!!!.......<br />
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Heath finished up school last August and is officially a PNP-AC. He recently accepted a job as the NP for a couple of great surgeons at Centennial Women & Children's that recently opened here in Nashville. It will be quite a role transition but he is really looking forward to learning a lot and helping to grow the program!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7yv_ji1UdnnKLWdg9l_sbH88I_Jw8qSDmh5cJb-bjNMXBP0Lt5m70hCJCZJ63TFO5JkKbBYJc6S_-95UY2jnem2lLEUrRAN_ZiATaPCF4bpjEoniQAr3Y1SC_lvWzZPh2l6Uk2XHhkSCs/s1600/DSC_0071.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7yv_ji1UdnnKLWdg9l_sbH88I_Jw8qSDmh5cJb-bjNMXBP0Lt5m70hCJCZJ63TFO5JkKbBYJc6S_-95UY2jnem2lLEUrRAN_ZiATaPCF4bpjEoniQAr3Y1SC_lvWzZPh2l6Uk2XHhkSCs/s320/DSC_0071.JPG" width="320" /></a></div>
I suppose my excuse for not blogging is that I've been a bit busy myself with school since last August. I'm crazy enough to do the same program Heath did, also in a year! The timing of Addy's Fontan was CRAZY- we were in the hospital, still working, and I was going to class while she was inpatient! WHO DOES THAT? I KNOW?! But I'm trucking through it, one gruesome week at a time. I'll be done in August and will be starting my last round of clinicals in two weeks. I've traveled back and forth to Memphis & Knoxville for my clinicals so hopefully this summer at Cookeville will be a breeze since I'll be able to go home each night. It's been hell and I know that I've missed my kids a lot but I take comfort that it will all be over soon and hopefully life will...well, be a little less busy of a life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFW7yrYrGVS5JO-3EE518TMelB25ZEwu6ny5iBI_dKoti98CLJO0C8vY-MUK09zjycsjHY5bYlSqk1RLS7f7VJCk4Xle0dlIrUOlw7omU3OD1pUB857n9cRb7F_dUkBARymmi8xyVZEpb9/s1600/907660_10200880725645540_831873915_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFW7yrYrGVS5JO-3EE518TMelB25ZEwu6ny5iBI_dKoti98CLJO0C8vY-MUK09zjycsjHY5bYlSqk1RLS7f7VJCk4Xle0dlIrUOlw7omU3OD1pUB857n9cRb7F_dUkBARymmi8xyVZEpb9/s320/907660_10200880725645540_831873915_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and daughter pic, love those moments!</td></tr>
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We've had a few major holidays while I've been gone, here's the highlights of those! </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqViKNOwjJ_2M13Icfab4GwXr0W5r7UvKF_vHS4dGHlE6w_ujCdM_Anrl2mHWklop6s506QJHF63MM65M6XJNk2CZYf0L-zbsUeQg3f_9K5oQfHeWBtXtcSsF-baKamsXsQBavionMD2fU/s1600/908989_10200881295339782_1195416371_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqViKNOwjJ_2M13Icfab4GwXr0W5r7UvKF_vHS4dGHlE6w_ujCdM_Anrl2mHWklop6s506QJHF63MM65M6XJNk2CZYf0L-zbsUeQg3f_9K5oQfHeWBtXtcSsF-baKamsXsQBavionMD2fU/s320/908989_10200881295339782_1195416371_n.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The three very different personalities evident in this picture- plus Cookie, who Addy had hostage!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxAylQgPoA-1sARvzJ6Q8bFsEwiCAeIID0IvpybzLj5N0Lk1IN_jxFExv3oziJNsmkQCQ49lYul310pfgoFseOzZkG4PLKaM4syTduKmrxbSh7ApTXPleHceAHXw08ngecYQZNWJEBBn08/s1600/DSC_0238.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxAylQgPoA-1sARvzJ6Q8bFsEwiCAeIID0IvpybzLj5N0Lk1IN_jxFExv3oziJNsmkQCQ49lYul310pfgoFseOzZkG4PLKaM4syTduKmrxbSh7ApTXPleHceAHXw08ngecYQZNWJEBBn08/s320/DSC_0238.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Halloween all three kids got to Trick-or-Treat!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmS88cJMtq93M9uj0-qFQkT-gD0LtUwn2ONCqf5hUsZJ3pqug9iOfJsA1AjP02wpuwsGzSyYV4V1pTUwlFnkwAp5doUvr3WTxE0s-xr7wgkIGdNV2XpaBdAk_NnGilO1Hm4-oQP8bCM4B/s1600/DSC_0248.JPG" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmS88cJMtq93M9uj0-qFQkT-gD0LtUwn2ONCqf5hUsZJ3pqug9iOfJsA1AjP02wpuwsGzSyYV4V1pTUwlFnkwAp5doUvr3WTxE0s-xr7wgkIGdNV2XpaBdAk_NnGilO1Hm4-oQP8bCM4B/s320/DSC_0248.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ride 'em cowgirl, she is ready to tic-or-teat!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmo1DhReG1ZVnZSFAf_OO40x0GQztd8-p6DVeEohej3K_0LmUgj-jemj2hywkt2BYiF_UkXwna7UmAVXPH3QBEhSTcsHsJ0RBWYvEqLhj899gLZWHNeHkpHxJVFszqJNCZz3_5vk_V2TNb/s1600/IMG040613-068+%2528rev+0%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmo1DhReG1ZVnZSFAf_OO40x0GQztd8-p6DVeEohej3K_0LmUgj-jemj2hywkt2BYiF_UkXwna7UmAVXPH3QBEhSTcsHsJ0RBWYvEqLhj899gLZWHNeHkpHxJVFszqJNCZz3_5vk_V2TNb/s320/IMG040613-068+%2528rev+0%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First time coloring eggs, she was enthralled with the coloring and egg hunting!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG7w3BgrW2BjjRfN_J1gAIu-G9qp1MBJN6XMb1HGp9dJp7dq5MQS-_MDZKwHTtqv-Wmvpq7pajzFbKwVn3uHOWhMqACotKTk_3t0aqHxSp0n5xpRQboSGgqRJSGyvlwToLxoyTQRMEFH8I/s1600/IMG040613-076+%2528rev+0%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG7w3BgrW2BjjRfN_J1gAIu-G9qp1MBJN6XMb1HGp9dJp7dq5MQS-_MDZKwHTtqv-Wmvpq7pajzFbKwVn3uHOWhMqACotKTk_3t0aqHxSp0n5xpRQboSGgqRJSGyvlwToLxoyTQRMEFH8I/s320/IMG040613-076+%2528rev+0%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love that girl! We chose to color eggs in just panties to avoid any new colored clothes!</td></tr>
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Maci....sweet Maci! We pulled Maci out of public school last October (yep, right after that Fontan) due to issues with the public schools...it'd be awfully hard to be a good mommy from prison after I've strangled one of those idiots at that school. It was a big decision and commitment but we have muddled through it! Maci has done surprisingly well- from not being able to read 3 letter words 6 weeks into 1st grade- she is now reading independently and doing 3 digit addition and subtraction! We have found she has some different learning needs that they just weren't meeting for her to succeed. Some days are still easier than others but overall Maci has really thrived being homeschooled! We have decided to put her back in private school next year though, simply for the social interaction. I will likely need to work full-time for a few years after graduating and there just isn't time to get her to practices, play dates, and the many other opportunities that I could take her to if I were home all the time. While she loves being at home with me & Addy, she is also super excited to meet lots of new friends! She also recently got the cutest pixie-cut you've ever seen on a 7 year old! After multiple bouts of critters that kept coming home from school, combined with her fine motor skills that lacked the ability to brush her hair well... I'd had it! She loves it of course- has the best collection of headbands ever, and really looks grown up these days! I'm so proud of the young lady she's becoming! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEhWzOA9ukB3SiJ3ihExxpw3x1AtpugtcU9JBNaq6_SqnXd0YjCZscRELE9xXE1R0yGV2XkndZ9ZIyr06dkXEQIM3wXiV6r-1uH50fyLTpXPYd2i8wLgaLjZyhjEQk32V80p2DaxtwKXsD/s1600/907267_10200885705050022_780732314_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEhWzOA9ukB3SiJ3ihExxpw3x1AtpugtcU9JBNaq6_SqnXd0YjCZscRELE9xXE1R0yGV2XkndZ9ZIyr06dkXEQIM3wXiV6r-1uH50fyLTpXPYd2i8wLgaLjZyhjEQk32V80p2DaxtwKXsD/s320/907267_10200885705050022_780732314_n.jpg" width="234" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Working hard at homeschooling in the classroom!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPv8zlRozlRv4L7KzPdZhUFSq-l0hk9GzeVMuyFlXsE-WPk9Sqtl2oH-rIvrkGBD4RBxjtMYVezM2LRgoWCVezgdaH-9lTUuTZmESdPW0XJJsh9iLo4HK3XH924kCr2iZ88rLYHwbmkiJ4/s1600/907161_10200885700649912_552984421_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPv8zlRozlRv4L7KzPdZhUFSq-l0hk9GzeVMuyFlXsE-WPk9Sqtl2oH-rIvrkGBD4RBxjtMYVezM2LRgoWCVezgdaH-9lTUuTZmESdPW0XJJsh9iLo4HK3XH924kCr2iZ88rLYHwbmkiJ4/s320/907161_10200885700649912_552984421_n.jpg" width="234" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her new adorable hairdo, no one could look cuter!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvY1okvEaMPks3fffArUyIwCPWx2wMARJtkKdlNAvVyhriULagjYwTQsPw8jZ_VhBHQmac4XjSeFgkqn9s4J4Ttk-lNTubtDoVgX5OQN9zwMcwm8NEv55nJGIuIn77uB7Rmp5gEMp5CRGl/s1600/899646_10200882983141976_1086219772_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvY1okvEaMPks3fffArUyIwCPWx2wMARJtkKdlNAvVyhriULagjYwTQsPw8jZ_VhBHQmac4XjSeFgkqn9s4J4Ttk-lNTubtDoVgX5OQN9zwMcwm8NEv55nJGIuIn77uB7Rmp5gEMp5CRGl/s320/899646_10200882983141976_1086219772_o.jpg" width="237" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her 7th Birthday party at Mellow Mushroom, missing her 2 front teeth!</td></tr>
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Hunter- well, what can I say? Hunter is really growing up, I'm waiting for that 11-13 year old growth spurt because I'm pretty sure it's coming soon, but I'm not sure I'm ready! He's had his share of problems with school, mostly related to his lack of organization and accountability, but overall he's doing pretty well given the standard of the school. We have decided he will also go to private school next year so we're prepping him to be ready to step up to the standard of higher expectations at his new school. He is a huge help on the farm and for the most part he keeps everything running when dad is at work!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaywRxK7Ntxv6ew1aZoUrIXm46BXhbgTo875lDrVAD36fEOMfEMmgfWqOJro5pK9nGstBhAYBXaAth8TAMBcn4RPX81BIAtcfDft-_T9lZ3VLG_WhRHOHGDcGpZLiYaxGfNspTSaCeQyaS/s1600/907632_10200885722170450_1813339542_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaywRxK7Ntxv6ew1aZoUrIXm46BXhbgTo875lDrVAD36fEOMfEMmgfWqOJro5pK9nGstBhAYBXaAth8TAMBcn4RPX81BIAtcfDft-_T9lZ3VLG_WhRHOHGDcGpZLiYaxGfNspTSaCeQyaS/s320/907632_10200885722170450_1813339542_n.jpg" width="234" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking all serious riding the bull....he stayed on < 3 seconds!</td></tr>
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And then there was Addy.....HURRICANE ADDY.....words can barely describe that child. For every feature that Hunter & Maci have, she is the exact opposite! So I'll fast forward really quickly back to Fontan and give you the cliff's notes version....the day we were supposed to go home we found a clot in her IVC on her exit echo. We were devastated, I really felt like that was the other shoe dropping that I was waiting for. The next few days included a lot of pokes for Lovenox and labs, but we finally made it home 13 days after her Fontan! We endured 6 weeks of those twice a day Lovenox shots before we switched to Coumadin. I'll be honest, I really dreaded that. I mean, 2 weeks before her surgery she was RUNNING down her slide on her LittleTikes playset and crashing into walls! How were we going to manage to keep this child alive on Coumadin without letting her kill herself with a bleed!? I really did expect it to be worse than it has been. We have only been to the ED one time for a bloody nose that wouldn't stop after her face met hardwood floor, and we haven't had to have any head ultrasounds yet! I've decided that there is no point in trying to slow her down, so I just try to at least have my eyes on her when she hits and runs into things so that I know which body part to inspect! We are now only on Coumadin and Lasix, and hoping to wean off that last bit of diuretic soon!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOA1FKNnJS_dvTRO57T9mJjd5BIiaB29M02q0qT8x8gj8VYnJ0qGvA61Fgu4OdqD5_Rop9yZqcJ38em6toCGSSpudeMz7KNDI3Ew-VAbXgoNFXxBK4Da1eGSzATLKc5NkPJeC1r6Fm7DUk/s1600/908530_10200886346346054_1550263914_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOA1FKNnJS_dvTRO57T9mJjd5BIiaB29M02q0qT8x8gj8VYnJ0qGvA61Fgu4OdqD5_Rop9yZqcJ38em6toCGSSpudeMz7KNDI3Ew-VAbXgoNFXxBK4Da1eGSzATLKc5NkPJeC1r6Fm7DUk/s320/908530_10200886346346054_1550263914_n.jpg" width="234" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPIo0DeGcB8pXNK9ysx_cpddTQOy5HGUB0GF-vzwYxsNKBIvcQOh-QluhisP3v5pfSAuFFDKZ5RCpJ7e3fkAtm3uZWf4mQE9Gj68pwOUk_RM597zfVqKUkiz4-SCAV9QMaFRbJaMVWoc17/s1600/907474_10200880816007799_825493657_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPIo0DeGcB8pXNK9ysx_cpddTQOy5HGUB0GF-vzwYxsNKBIvcQOh-QluhisP3v5pfSAuFFDKZ5RCpJ7e3fkAtm3uZWf4mQE9Gj68pwOUk_RM597zfVqKUkiz4-SCAV9QMaFRbJaMVWoc17/s320/907474_10200880816007799_825493657_n.jpg" width="234" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOA1FKNnJS_dvTRO57T9mJjd5BIiaB29M02q0qT8x8gj8VYnJ0qGvA61Fgu4OdqD5_Rop9yZqcJ38em6toCGSSpudeMz7KNDI3Ew-VAbXgoNFXxBK4Da1eGSzATLKc5NkPJeC1r6Fm7DUk/s1600/908530_10200886346346054_1550263914_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She is in full fledged princess dress up mode these days! She and Cookie have long great conversations together! </td></tr>
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Addy has turned into a full fledged 2 year old! She loves telling me No! and since now she gets in trouble for that, she has resorted to grunting "Ugh" instead when she refuses to do anything. I still remember that first conversation with Dr Kavanaugh in which she said she would likely be behind in her fine/gross motor skills, speech, and maybe even have learning disabilities. I'm pretty sure the only thing we may be dealing with is a defiance disorder! I feel so fortunate that we have been blessed with Addy's heart. She climbs like a monkey, runs like a elephant, and can out-talk anyone! She speaks in full sentences, knows her ABCs & colors, and is so smart sometimes that it is down right scary! I am reminded every day at work and clinicals how lucky we are that Addy has only had the heart problems, we have had no major complications or long hospitalizations, and that all other systems have worked well- most importantly her brain. She is growing and thriving since the Fontan! She continues to hang out on the growth chart around the 25-40% percentile, which I'm pretty happy with! Our Fontan miracle was that after her surgery, all of her shortness of breath completely disappeared! Dr Kavanaugh told us that in 20 years she has never seen something like her symptoms (which they had no clue what was causing them) that then disappeared after the Fontan. I don't know why it happened, but we'll take it! Only recently she has begun getting more out of breath again but she now has constant snot running from her nose and I'm afraid those adenoids are going to have to come out. They were nearly occluding her nasopharynx before surgery, and now we are off of all steroids since they gave her perioral dermatitis....so that means surgery to laser those babies out! That will have to wait just a bit while we acquire new insurance but I suspect it will have to come soon!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglbtM9v5lyKmJOgKBRe2FHXIWgZ-GHMnyW7ZTzFcVapUN6G54mcC0CI69Vc1a_HzfpTw4QfzXUnSGdhTb-9z5p_oalumDG6ilblly7Kpg2i_NlBkbdJfqSSEUAM5pLEZk0S4TdWzA9inae/s1600/897300_10200890922740461_142328012_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglbtM9v5lyKmJOgKBRe2FHXIWgZ-GHMnyW7ZTzFcVapUN6G54mcC0CI69Vc1a_HzfpTw4QfzXUnSGdhTb-9z5p_oalumDG6ilblly7Kpg2i_NlBkbdJfqSSEUAM5pLEZk0S4TdWzA9inae/s320/897300_10200890922740461_142328012_o.jpg" width="237" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poor Cookie, she just wants a little peace n' quiet!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY_VPeY0pi24sRgHk8HczENur7hLBk_zQSLf6ns_Z5BzBhwSlVtGs25Ct3EgO9RvWS3bZPqswLo-stlM_-aFxrpCjBaSXJOw5oyMxlAj4Fbx-c1MGFAqobEVi76ND41rz-YwukLRqOKcJX/s1600/900817_10200880344196004_225835092_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY_VPeY0pi24sRgHk8HczENur7hLBk_zQSLf6ns_Z5BzBhwSlVtGs25Ct3EgO9RvWS3bZPqswLo-stlM_-aFxrpCjBaSXJOw5oyMxlAj4Fbx-c1MGFAqobEVi76ND41rz-YwukLRqOKcJX/s320/900817_10200880344196004_225835092_o.jpg" width="237" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Princess Addy wearing a dress that Maci once wore!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY_VPeY0pi24sRgHk8HczENur7hLBk_zQSLf6ns_Z5BzBhwSlVtGs25Ct3EgO9RvWS3bZPqswLo-stlM_-aFxrpCjBaSXJOw5oyMxlAj4Fbx-c1MGFAqobEVi76ND41rz-YwukLRqOKcJX/s1600/900817_10200880344196004_225835092_o.jpg" style="margin-left: 1em; margin-right: 1em;"> '</a><br />
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Last fall Heath and I made the decision to try to become closer to become closer to our religion find a church for our family so that our children would be raised learning about the lord and how He wants us to live. We feel blessed to have found World Outreach Church because it has really changed our lives. For the first time, we both have a sense of spiritual growth and peace. We are trying to be the Christians that God and Jesus would be proud of. It has really helped our marriage and helped us be at peace with our lives. The last few years have had a lot of stumbling blocks that we didn't always understand the reasoning for. I think we've gone through all of the stages of grief, as most parents have. I still struggle with fear of the future and Addy. Fittingly so, our pastor is now doing a series on overcoming fear and anxiety. I work with families every day that say goodbye to their children way too early. It seems like there have been so many new angels welcomed into those gates this past year that have really affected me very deeply. It breaks my heart for them, and terrifies me. I learned long ago that we cannot live our lives according to fear, even if I still have it. I know that He is in charge, not us, but that doesn't mean that we ever want to face our worst nightmare. Some people say that if you have faith and believe that God will take care then you can't have fear, but I don't think that's true. I know that He ultimately decides when each of our time in this body is over, but that doesn't mean my earthly mind can totally understand why (at that moment at least), or that we welcome the pain into our hearts. No matter how happy a parent may be if they know their child is at peace, whole, and in the eternal presence of the greatest God- it is still the hardest thing that a parent could ever endure. I'm working to truly understand and accept the word of God and incorporate that into our congenital heart journey. Some days its easier than others- so the harder days are the ones where I say an extra prayer, give extra hugs and kisses, give many thanks for each moment and day that we have, and say don't worry about the future that I do not know and cannot change! I want Addy to always know that she was made special for a reason and that she is our perfect gift that I wouldn't change for anything!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinskb-yOP_n3ChDcTG8u3DSyIpPcn_Pgp1evfgtcExmMpHxEz5ZJ3hxvFEHzCSeCEzhzC4PAvkOzOQ_5hKZumamfDy7U-Nfn_Fr4yO5yv1Gia5G4Q1s_MOAn15nmczK73bWwXyW7SnMBee/s1600/IMG040613-159+%28rev+1%29.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinskb-yOP_n3ChDcTG8u3DSyIpPcn_Pgp1evfgtcExmMpHxEz5ZJ3hxvFEHzCSeCEzhzC4PAvkOzOQ_5hKZumamfDy7U-Nfn_Fr4yO5yv1Gia5G4Q1s_MOAn15nmczK73bWwXyW7SnMBee/s320/IMG040613-159+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yea she looks innocent... a rare occasion when she would sit and pose for a picture!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOMtcxPp087vyZY8ELdVPxRwWAMOzE00vFBziu8_C5N5ZbHrZz4N01FiCCP0SazNZtolPZ31YJrXtUFcB-1LZ4RDG0gPQmCOpgcnyr0kWagn3dV4bB7cE4hVNONmdCcZFt0M6Y8nkCkyM/s1600/IMG040613-144+%28rev+1%29.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOMtcxPp087vyZY8ELdVPxRwWAMOzE00vFBziu8_C5N5ZbHrZz4N01FiCCP0SazNZtolPZ31YJrXtUFcB-1LZ4RDG0gPQmCOpgcnyr0kWagn3dV4bB7cE4hVNONmdCcZFt0M6Y8nkCkyM/s320/IMG040613-144+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loves playing pretend asleep!</td></tr>
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Okay, so that's about as short of a blog as I can write to update 5 people over 6 months! I promise to update more often so that it doesn't have to be such a novel! There's about a million pictures, but I've tried to post the best ones of the last 6 months!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7Ft9WU5k3o8O6OvM8Jcg61jyYFDAV_gzaptz3qosAIn2J5B3Z2lPCWhih0cCoHq8DBpNuKNu2PVVjuXizQn-keaBjwyilVu7lt5XQPbIarAm2ZsSDbQjQXdmO777fdsS9BBnkj3qzYSzJ/s1600/IMG040613-065+%28rev+1%29.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7Ft9WU5k3o8O6OvM8Jcg61jyYFDAV_gzaptz3qosAIn2J5B3Z2lPCWhih0cCoHq8DBpNuKNu2PVVjuXizQn-keaBjwyilVu7lt5XQPbIarAm2ZsSDbQjQXdmO777fdsS9BBnkj3qzYSzJ/s320/IMG040613-065+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our miracle, could she be any more perfect!</td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-82821082327674573092012-09-10T08:44:00.003-07:002012-09-10T08:44:57.478-07:00The journey continues...post-op Day 5Well, we have made it to post-op day 5 of the Fontan. It seems like ages ago that we were anticipating this surgery, and now we are just living the aftermath. It's amazing how much lower my stress level is at this point. I know that most people think that continuing to be in the hospital should be the most stressful thing. For us, waiting on the other side of those double doors, not knowing how things are going, and waiting to hear a real voice and see symmetrical breath sounds post-extubation are the most stress creating. Now we are just living it. It is just a careful dance of coordination for Heath and I to continue working a few days here and there, making sure our other children are taken care of, and making sure someone is there for Addy. Yes, it is exhausting, but as long as I watch this girl sitting up by herself in bed and watching her Dora while singing "we did it, we did it" and "oh no, Swiper the Fox", it doesn't seem so bad. Yes, it really does suck sleeping on the pull out couch, my bones and joints ache so much in the morning I swear I've aged 20 years overnight. The hospital food court choices get old very quickly, and our diet is nothing but a whim of a thought. But all those negative things pale in comparison to the joy we have with how well she has done. The defining moment came last night that we knew our baby girl was starting to feel better. She was sitting up in bed and I asked her, "Are you OK" and she says "Yea, I ok!" I will admit, I became a little weepy for a moment, but you just can't imagine how sweet those words were to hear. It means slowly but surely, our baby girl will be back to herself.<br />
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She made is out of oxygen yesterday and with good coughing is slowly clearing up the pulmonary edema and junk in her lungs. Her appetite has been great but she continues to vomit liquids (all but the 1.5 cal Pediasure that is so rich it's like a milkshake), probably because she hasn't pooped since Tuesday (i know, TMI). They are finally scheduling a bowel regimen so the hope is that her ileus will resolve with this and she will be able to tolerate fluids. The biggest negative is that her chest tubes both continue to drain a LOT. I'm trying not to dwell on this because this is the nature of the Fontan game, and I should be thankful that everything else is going so well. However, I can't keep those nursing thoughts out of my head of the "what ifs". It is ONLY day 5, and many are still in the ICU or on oxygen at this point so I should just quit my whining. But in the back of my mind, I keep thinking that we have had such a good course (quite unexpected and problem free), is this going to be our big downfall? Is this going to be what stops us in our tracks? Is this the other shoe dropping that we have been waiting for 2 years?<br />
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As always, I must continue to document our journey in pictures. I think it's as much cathartic for me as anything, so please enjoy! We would like to say thank you for all of the calls, texts, and visits we have received from everyone. The support helps makes this hellatious journey just a little easier at times.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcMt3YIplNc8r2ro48Tr5djtAHt9P5T61fBEmRo-l7gllPvLfEea7f7ASdWhxGiybnJIyew7OeyhChkmB2_O98oDMnCul92Sy-_-xwNFJyh9nAyU8vFH5Jxna8ai3_ZXisXR2NFWS7Mv4E/s1600/IMG090912-007+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcMt3YIplNc8r2ro48Tr5djtAHt9P5T61fBEmRo-l7gllPvLfEea7f7ASdWhxGiybnJIyew7OeyhChkmB2_O98oDMnCul92Sy-_-xwNFJyh9nAyU8vFH5Jxna8ai3_ZXisXR2NFWS7Mv4E/s320/IMG090912-007+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is right after we got to see her- Post op day 0, she still looks like our girl even with all the wires and tubes!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpVmCQp6xBuOZYL3UIiPSdKeTAKImvmVOkfoGKZZdHGRvA0VcTEzBHXW3Y44Lv99ep7pJZv_Z8jIweX5dtLdhjO8v9rTS6adTl4E-N7wTdVvw7iIqEsNYQPYypEKiD93d2dDl9WsyhcLi8/s1600/IMG090912-009+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpVmCQp6xBuOZYL3UIiPSdKeTAKImvmVOkfoGKZZdHGRvA0VcTEzBHXW3Y44Lv99ep7pJZv_Z8jIweX5dtLdhjO8v9rTS6adTl4E-N7wTdVvw7iIqEsNYQPYypEKiD93d2dDl9WsyhcLi8/s320/IMG090912-009+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Dare", he's always there!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiCrhvFVrCtS4GtEynqFibUWPgp6gz1mcoQ3WPhOpxTszQEp9CKGMSibmjdHiV5HRJVwguKXSONRiQr57SUknTD0n0JBsOH_8hi3S9Ce8fUId4SwvAYc5jlNSR0vpJL5rZzDEL2u9LRF3J/s1600/IMG090912-013+(rev+0).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiCrhvFVrCtS4GtEynqFibUWPgp6gz1mcoQ3WPhOpxTszQEp9CKGMSibmjdHiV5HRJVwguKXSONRiQr57SUknTD0n0JBsOH_8hi3S9Ce8fUId4SwvAYc5jlNSR0vpJL5rZzDEL2u9LRF3J/s320/IMG090912-013+(rev+0).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The next morning, Post-op Day 1, she puffed up quite a bit overnight!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwEB13I5-p2-o0MLxwr4jn57sczeeoHtweSR2Hhzg7LevEonki-IybxdmRBiu_TB197bN1LgAy91mouL4UF0Uotf8D5X_hzlpg4lGuECZxoPEayayJ027ob7nvpgO-GA-LGDHemqoFAr4/s1600/IMG090912-018+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwEB13I5-p2-o0MLxwr4jn57sczeeoHtweSR2Hhzg7LevEonki-IybxdmRBiu_TB197bN1LgAy91mouL4UF0Uotf8D5X_hzlpg4lGuECZxoPEayayJ027ob7nvpgO-GA-LGDHemqoFAr4/s320/IMG090912-018+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally extubated later on Day 1, she was much happier to have that tube off and a few wires gone!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHZh-r8-4475TNJP12kSFXfr6vac7WEbdUM7CsBZte_fOX3rmWE23du0_kg5m6vEOtWfWqe1qxq0m4t9SCGuFpN1D92CwIptwHW_vlVEjjjvuY46I3UtKLmgiG0B4XlQ_DGR3J82aijoqI/s1600/IMG090912-024+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHZh-r8-4475TNJP12kSFXfr6vac7WEbdUM7CsBZte_fOX3rmWE23du0_kg5m6vEOtWfWqe1qxq0m4t9SCGuFpN1D92CwIptwHW_vlVEjjjvuY46I3UtKLmgiG0B4XlQ_DGR3J82aijoqI/s320/IMG090912-024+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Post-op Day 3 we made it to the floor, she still hasn't smiled or played yet and is requiring a lot of pain meds</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihKp8rWl1RrPBK1OH4SWmlICMNk1vODY4kYoJgIcFEWywZLxYmAEP9f2SkueldcrrzzFOvMKzzHb7Fpog-aDeB6u_EMPVfJWTO_XLBn21-ToGYanq21i_6nzJguA4uFUzdlFyGNCy1zu_W/s1600/IMG090912-042+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihKp8rWl1RrPBK1OH4SWmlICMNk1vODY4kYoJgIcFEWywZLxYmAEP9f2SkueldcrrzzFOvMKzzHb7Fpog-aDeB6u_EMPVfJWTO_XLBn21-ToGYanq21i_6nzJguA4uFUzdlFyGNCy1zu_W/s320/IMG090912-042+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She finally found her smile on Day 4! This was after she had her first bath since surgery and was feeling a little goofy! Pain is finally being managed a little better!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQWVoxek3soV6VwEGhGIRzUK_-1zsGHX8-Kp7g-8hYkpO97ljgAP_hKE-30n1lQ_1zNkQ_a8ZZTzm8Mw5qXQy6aqHOy26w0eJKwNoNuqOE5-h_MLQpCNtRSJfk__scF1ME2S6Qe3skVrEN/s1600/IMG090912-035+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQWVoxek3soV6VwEGhGIRzUK_-1zsGHX8-Kp7g-8hYkpO97ljgAP_hKE-30n1lQ_1zNkQ_a8ZZTzm8Mw5qXQy6aqHOy26w0eJKwNoNuqOE5-h_MLQpCNtRSJfk__scF1ME2S6Qe3skVrEN/s320/IMG090912-035+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kisses for Papa, he helped get her all clean and got plenty of smiles from her!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPRgtFk9Pw0b0mN_UcZi7cmD19uneuTVmy0eZRUB7ewKpobVoRM2bOxFXG9mKaDs5Rrc3Dg2ZrFR1fQ3yNmO0k7k9iIpC9MfIKbzEv6Rfd5j5LUdZf50_fXxMrd5tP4BMaEW7fnsTImvV/s1600/IMG090912-040+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPRgtFk9Pw0b0mN_UcZi7cmD19uneuTVmy0eZRUB7ewKpobVoRM2bOxFXG9mKaDs5Rrc3Dg2ZrFR1fQ3yNmO0k7k9iIpC9MfIKbzEv6Rfd5j5LUdZf50_fXxMrd5tP4BMaEW7fnsTImvV/s320/IMG090912-040+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy got kisses too, still feeling good at this point of the day!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVxvIXohyphenhyphen_d8d6tqpjBrtICR_vORTuQAJyqmCjaTUNvbKXqsYAKuzaCBCn5vn-nyXPpJjuwjd520ngHLbnK6Nt19YKF7EduvFWwomC5u2WbHOrn82KC7oRHBn7AQmbGGvpwtH24nSPd2sI/s1600/IMG090912-043+(rev+1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVxvIXohyphenhyphen_d8d6tqpjBrtICR_vORTuQAJyqmCjaTUNvbKXqsYAKuzaCBCn5vn-nyXPpJjuwjd520ngHLbnK6Nt19YKF7EduvFWwomC5u2WbHOrn82KC7oRHBn7AQmbGGvpwtH24nSPd2sI/s320/IMG090912-043+(rev+1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favorite contemplative picture, she is watching Dora and saying "Hmm"</td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-79969254392145208122012-09-06T20:43:00.001-07:002012-09-06T20:43:51.654-07:00Post Op Day 1- What a day!Well, yesterday was a long day but we are happy to say we are on the other side of open heart surgery #3. They took Addy back about 8am yesterday. We were thankful that they tanked her up on Versed so it made a very scary moment for us much easier to smile through. Versed is a good thing....it hit her like a ton of bricks! All the sudden she was holding my Kindle closer and closer to her face, and then she was asking "where my Kindle go, where my Kindle go?" while she held it in her hands. She went easily with the OR team and we began our wait.<br />
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To anyone that has never had to sit in the surgery waiting room...it is hell. A colorful assortment of families inhabit this area throughout the day as they wait for their offspring to various procdures or operations. Some of these families are wondering if they will see their child again...others use it as an opportunity to have a hillbilly family reunion- this phenomenon seems to be most commonly witnessed when the child is having a relatively simple procedure such as tubes in ears or an umbilical hernia repair that brings in family members from all branches of the tree. So...now that you have an accurate picture of what we're dealing with here, we waited...and waited...and waited. Dr B. finished up about 2:30 and came out to tell us exactly what we needed to hear. Everything was picture perfect in surgery, no unexpected complications. Her anatomy and pressures were the best we could hope for and hopefully this will decrease the risk of post-op complications.<br />
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We didn't actually get to see her until almost 6:00 last night, due to some breakdowns in communication, but the positive note is that it didn't have anything to do with how she was actually doing. The downside is that after placing the Broviac, and replacing it, the line just would not draw- thus we were unable to confirm that it was a good line in place. Throughout the night she was initially a little behind with fluid management but once all of that was regulated her urine picked up, lactate dropped, and gases were perfect.<br />
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This morning, she has started waking up with a vengeance! She had her foley taken out and we have started diuretics to start the drying out process. Her chest tubes are still putting out a good but reasonable amount. One of her ART lines has been taken out and the other ART and IJ central lines will probaby be taken out tomorrow. They were able to secure a new double lumen PICC line to serve as access until she goes home since the Broviac didn't work out. This is great because she was still sedated and never knew otherwise. The CV surgery NP finally was able come and pull her LA and Broviac lines so that means we are officially ready for extubation! This is good because she has been blowing through Dilaudid and Versed like they're candy all day- she wants that tube out! She has opened her eyes and shook her head no to a few questions, but mostly she just cries and cries whenever she wakes up. She will grab Bearie and hold him and has mouthed "Mama" a few times. Even as hard as it is for her to look at me and cry with a scared look in her eyes, it's all worth it. I'll take these tough parts over many more things we could be facing.... going to extubate, to be continued....<br />
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It's now 10:30 at night and the last 6 hours have been a blur. Addy extubated to nasal cannula and within an hour was on room air! She has had the O2 back on some just because she is still desaturating when she gets ticked and holds her breath but for the most part her sats are >92% ,which is better than we have ever seen! She is definately not a happy camper but I am overjoyed to be able to say that Addy is still the same girl we sent to surgery! The first few hours she mostly slept off all the sedation and occasionally woke up distressed. After 3 hours she began demanding "Addy drink, Addy drink" and "momma hold Addy". She chugged down 3 glasses of fluids in about 30 seconds a piece and just couldn't satisfy her thirst. Finally they gave the OK to advance her diet and she got her favorite food in the world "appleshaush". She ate half a container, demanded to be held (we of course complied), let out the world's biggest belch, and promptly fell asleep! She even slept through both of her breathing treatments and never moved! They are anticipating removing her IJ central line and other ART line later tonight (when she is already awake if they are smart). We thankfully have a sleep room tonight so I am finishing this up to try to get at least 2 solid hours of sleep. The exhaustion has truly set in tonight to the point of feeling sick but it doesn't matter. I will go days on end without sleep if she needs me there. Luckily I think we have had great nurses so far so I trust they will take good are of her and won't hesitate to call me back if she needs me- so that's the only reason she is out of my sight for now. I just want to say how touched we have been by the outpouring of love and support from friends, coworkers, family, and complete strangers. We are truly blessed and feel that God continues to bless us every step of the way with not only one amazing little girl but a great amount of love from so many people!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-8029700396902428072012-09-04T18:47:00.000-07:002012-09-04T18:47:05.228-07:00Night before the Fontan<br />Today was a long day. We had pre-op appointments starting at 9 am that thankfully we were done with by 1:30. As far as pre-ops go, I don't think our timing was too bad. The only sour spot of the day was the crummy phlebotomist (who had previously been fired from ever taking her vital signs due to poor technique and attitude) that took 3 sticks (and a piss poor attitude) to get her labs drawn. Otherwise, she laid still like a big girl for her echo for the first time since she was a baby! She only got a little freaked a few times but Toy Story was on so she was able to be quickly distracted. Our meetings with Dr. B (surgeon) and K (cardiology) went great and they are happy with the shape she is in prior to surgery. Dr B. says that hopefully he will be in and out and she will fly through it the same as the last 2. We are psyched that he is going to put a Broviac line in while in surgery at our request. Let me explain why this excites us. For her previous surgeries, Addy (and most pts) went to the floor with their RA (right atrium) central line. The protocol has now changed and now they pull this line and then put a whole new PICC line in these kids when it comes time to go to the floor. Well, with Addy's history of making it out of the ICU in record time, we weren't psyched about another invasive procedure and risk of infection so soon after surgery. This way, if he puts the Broviac in while in surgery, she can keep it for as long as she needs the IV diuretics and doesn't have to undergo another procedure that she'll have to be traumatized and sedated for. Hopefully if this goes well this could be a new thing that they do for more of the kids. Yay for less sedation and traumatizing procedures!<br />
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Grandma has been hard at work the last few days making Addy special hospital gowns and tele-pack pouches for her during her stay. We have our Dora goody bag of new toys to occupy her once she gets to feeling better, and plenty of snacks to keep us awake while we stand guard at her bedside. The kids are staying with my parents tonight, it was pretty tough not to lose it as Hunter (big brother) broke down crying before he left because is worried about her. Maci understands Addy is going to the hospital to get her heart fixed, but not quite the intensity of it. We plan to let them visit after she is extubated, but just don't think that sitting in a hospital for 12 hours and waiting is fair to them. <br />
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Addy had her chlorahexadine scrub bath tonight and is all clean and ready for surgery. Tonight I laid my baby girl down in her bed and kissed her for about the thousandth time today.
The tears in my eyes and heart threatened to overflow as I wonder if it
will be the last time I put her to bed. She smiled at me that gorgeous
smile and said "night night Mama" as I closed the door to her room. Two
years ago, we didn't know if we would bring our new baby home- and we
thought that was hard. Now she is no longer a baby but she walks, talks, blows kisses, gives high fives and knuckles, asks for Dora, sings ABCs, listens to her heart, and about a million other things.....and I'm scared to death that her heart won't restart on that table tomorrow. You know, I think that any other kind of surgery would be easier to take than knowing that a surgeon is going to have to cut open your child's chest and stop their heart....and know that only his skill and Gods hands are what will restart it again and bring our child back to us just as she is. I know all of the heart parents out there would agree that as they grow and develop their personality it becomes oh so much even harder to hand them over. I'm afraid that this may be the first time that she will cry as they take her away from us. I'm not sure yet if she will need happy medicine yet, but I'm not opposed to it if her mood appears to be clingy in the morning. Since I know that at her age she eventually won't remember going to surgery, I think the happy medicine is really more to prevent the trauma of having to watch your child cry and be taken from your arms. After 2 years, I always think I'm so used to this that it doesn't even phase me anymore. But really, every single day it scares me to death. Please pray for our family tonight as we prepare our warrior for her last big battle. <br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5127246076398203564.post-55115154359077845412012-08-26T10:28:00.001-07:002012-08-26T10:28:39.642-07:00We have just 10 days until Addy's final (planned) surgery. How time has flown! It seems like we were just celebrating her 1st birthday, and she just turned 2 last weekend! Our family has been so busy, it seems like every time we blink another month goes by! Hunter and Maci have started school back and are finally back in the routine of things. Heath graduated last month from his Nurse Practitioner program, a great accomplishment and relief to us all! Now it is my turn, as I have started the same program to complete in a year. Most people think that we're crazy but we're optimistic that if we've done it once, the second time should be a piece of cake!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSN5D6SidP5DYWVon2z7Ev9ww-IH5wFqOLvhk0D-GVVKaFzMzZ9mA2dJsbb_PmLvZsFUs9AYcaw_iklnKx0ygHsbw7rosFp92yzldqf2NVW5Z_fel49PYtL3IobeDmoipGiL7qKhyz8ioT/s1600/DSC_0072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSN5D6SidP5DYWVon2z7Ev9ww-IH5wFqOLvhk0D-GVVKaFzMzZ9mA2dJsbb_PmLvZsFUs9AYcaw_iklnKx0ygHsbw7rosFp92yzldqf2NVW5Z_fel49PYtL3IobeDmoipGiL7qKhyz8ioT/s320/DSC_0072.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heath and the kids at his pinning ceremony </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-h4o-qvZzJFQYQTiLBvposWZYO6QJMJo2uf0pGANa4J2HYe-ZEZwJX7zp2gh7yVSqSITsHA0AUINB9ePwiDvtYUffxK4v5m-KX40VX4iSunQEImGOTPf82ix9NfE-7iMeTlWKkR-iMfU/s1600/DSC_0073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-h4o-qvZzJFQYQTiLBvposWZYO6QJMJo2uf0pGANa4J2HYe-ZEZwJX7zp2gh7yVSqSITsHA0AUINB9ePwiDvtYUffxK4v5m-KX40VX4iSunQEImGOTPf82ix9NfE-7iMeTlWKkR-iMfU/s320/DSC_0073.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heath and his Mom </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2H3zoB4JSERzokjBPA0qJ_huV0yp8lOYnlf9U0Fixx7UfWWEciN6VOjtSRkk77NwfZQjBVu6swovJswl7Z7aFRZpad-jv347pFbB9E20YtkYQmXSWG3RtTV4uehmWlK88pSaheJlu40X/s1600/DSC_0074.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2H3zoB4JSERzokjBPA0qJ_huV0yp8lOYnlf9U0Fixx7UfWWEciN6VOjtSRkk77NwfZQjBVu6swovJswl7Z7aFRZpad-jv347pFbB9E20YtkYQmXSWG3RtTV4uehmWlK88pSaheJlu40X/s320/DSC_0074.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Heath- Addy is bored</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsW69o2BnoJ5S8bRf1x0j3IQvlEiyfeKPIyENND6987E_wF2yHBDsxBjTS7URCw15AUelDk3WMEqdQOReHblMSf7RrUZaJ7Pav8njMfByhskal8luidLy0BzELMxKQ0k5adN8jFAEbmUJb/s1600/DSC_0076.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsW69o2BnoJ5S8bRf1x0j3IQvlEiyfeKPIyENND6987E_wF2yHBDsxBjTS7URCw15AUelDk3WMEqdQOReHblMSf7RrUZaJ7Pav8njMfByhskal8luidLy0BzELMxKQ0k5adN8jFAEbmUJb/s320/DSC_0076.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nana and the kids at pinning</td></tr>
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Addy turned 2 this past weekend! We just had a small cake and party at the house with just us to celebrate. We were unsure of so many things when Addy was born, each birthday seems like a huge milestone that I am so thankful we get to celebrate. Although it is slightly overshadowed by the worry we have for the upcoming weeks, it helps to truly be thankful and recognize how special each birthday is. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokjpRkCtGw0TxxWIhq2KklVV_vuhrYwbLHbbg4FJpDlf7Yx3veuMjhaC1cagFoMMah_i4DOxBceJzKsxwy8NJhMjebmDMyl6OtbvXJm_BbfXPCfNxihPfr1GhUKYMRQqwt2cy6fp2385X/s1600/DSC_0086.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokjpRkCtGw0TxxWIhq2KklVV_vuhrYwbLHbbg4FJpDlf7Yx3veuMjhaC1cagFoMMah_i4DOxBceJzKsxwy8NJhMjebmDMyl6OtbvXJm_BbfXPCfNxihPfr1GhUKYMRQqwt2cy6fp2385X/s320/DSC_0086.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma and Grandpa bought Addy a new wagon for our hospital visit! We are very excited to have something to haul all our stuff around with!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjEags8ZesLD9eft77ft65XTg8vgxNborB8MUELDS4iKW3cTu9CAq-YVcvj-IaZIqa3Y9viad02BmXjTNpa5wJi-XvQ6Ay2yQFtq_KHHWSJVNbjUzAUnMQuzgAZ1SNiId5fwmYJdPYfQDh/s1600/DSC_0088.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjEags8ZesLD9eft77ft65XTg8vgxNborB8MUELDS4iKW3cTu9CAq-YVcvj-IaZIqa3Y9viad02BmXjTNpa5wJi-XvQ6Ay2yQFtq_KHHWSJVNbjUzAUnMQuzgAZ1SNiId5fwmYJdPYfQDh/s320/DSC_0088.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addy says "I could get used to this!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkvr6i7A6fIOMTjwIQYIpjn_FfUR23hJppcsXDgGgd-E7Sddrk5XKWSQrKXzfg1ZJFjt-IgucAN-_NvyKZmS4A-O7hkI-iDrvxbguGP7WQeiNLQGRsZ3SD3dlWtHQITPWco5jA6ZUg-s1k/s1600/DSC_0090.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkvr6i7A6fIOMTjwIQYIpjn_FfUR23hJppcsXDgGgd-E7Sddrk5XKWSQrKXzfg1ZJFjt-IgucAN-_NvyKZmS4A-O7hkI-iDrvxbguGP7WQeiNLQGRsZ3SD3dlWtHQITPWco5jA6ZUg-s1k/s320/DSC_0090.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Birthday to Addy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix64Gj8IL1591s33SeJrc2z0vy5LjSCvbkehTFU_wjmLB-0ttcI9oiTv4hyphenhyphen6jlrPlOUDQLsq_gcB5K3PEPRyZ5Cbnla54nAPyGd8JCQRnyjXubPFeXB1OsOwogv2GQGk2wIRMikPVcIJFF/s1600/DSC_0092.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix64Gj8IL1591s33SeJrc2z0vy5LjSCvbkehTFU_wjmLB-0ttcI9oiTv4hyphenhyphen6jlrPlOUDQLsq_gcB5K3PEPRyZ5Cbnla54nAPyGd8JCQRnyjXubPFeXB1OsOwogv2GQGk2wIRMikPVcIJFF/s320/DSC_0092.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Blowing out the candles on her Dora cake with Daddy!</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsDsBSAxUxMnkrn4Wj9C2_SL3SIZiLaSzGk8FkincvoQHNICbQnXBSxz4fBpX0GHRGiBQLsKcBgrMd786vT3KQJthNo4o20PStG-ebayHR2HGGfxTGLk85-RJBTEhYYJaWtvkuHbAAm-a_/s1600/DSC_0094.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsDsBSAxUxMnkrn4Wj9C2_SL3SIZiLaSzGk8FkincvoQHNICbQnXBSxz4fBpX0GHRGiBQLsKcBgrMd786vT3KQJthNo4o20PStG-ebayHR2HGGfxTGLk85-RJBTEhYYJaWtvkuHbAAm-a_/s320/DSC_0094.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yay, she did it!</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Mmm, Addy loves cake!</td></tr>
</tbody></table>
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Addy's surgery is planned for September 5th. It has snuck up on us, but in many ways we are just ready to be on the other side of this surgery. I am already trying to prepare the things that we will need to make the hospitalization with a 2 year old easier. I don't get paid time off as an unbenefited employee, and Heath doesn't have much accrued- so we anticipate just working around Addy being in the hospital as much as we can. My parents will be a huge help as always, and Heath's mom will come help us out for a few days as well. We will do as we always have- the best we can with what we have! This past week everyone except Heath has had a nice little summer cold, Addy included. This worries us because as most heart parents know, we have planned our life around this surgery and can't afford for it to be postponed! We made a visit to the pediatrician on Thursday and went ahead and had her put on steroids so that she could improve faster. We are confident that by another week and a half she will be all better and ready for the fight of her life! Otherwise, Addy is doing great! She is talking up a storm, and the things she says can really surprise you sometimes! We are anxious to get past this step to see if her activity tolerance increases. It is anticipated that if she continues having breathing problems after this surgery she will probably need her adenoids taken out. Fun, Fun.... Well, I guess that's all of the updates for now. Hopefully the 12 people who read this blog will keep us in their prayers in the upcoming weeks! I will try to keep updating during her surgery for anyone who follows!<br />
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<tr><td class="tr-caption" style="text-align: center;">Addy never smiles for the camera, so of course when I finally catch her in a smile she has a mouth full of Cheetoes! A true "Cheese" moment!</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">She couldn't possibly go up the stairs, the slide side is much more fun! This is her favorite toy right now! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Addy's driving her boat! "Choo Choo" she says!</td></tr>
</tbody></table>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-12959378159935579212012-05-18T14:34:00.000-07:002012-05-18T14:34:09.716-07:00Results of our big day of testing!We arrived home about an hour ago and Addy is almost back to herself. She did great through the procedures and is now appropriately crabby from anesthesia and overstimulation. The medical team was on their A-game today and everyone was great! I like to think that every patient receives such great care and has such great attention paid to any detail, but whether that is true or it is because they all know Heath and I- I'm glad they do! She is a little hoarse from the bronchoscopy but they have given her some steroids to help with the swelling of her airway. The good news we received today is that the pulmonologist said Addy's lungs look GREAT! This is a big relief, this means he saw no hypoplasia or compression of the lungs, and no signs of institial lung disease apart from expected chronic changes because of her cardiac disease! They did see a LOT of edema and redness in her airway, some subglottic swelling, and adenoids that were nearly occluding her nasal airways. We have an impedence probe on Monday to decide if reflux is one of the perpetrators in these problems, although I am not convinced that it is. We are also starting Flonase to try to shrink her adenoids and reduce some nasopharynx swelling. The thinking is that her adenoids/allergy problems are causing more mouth breathing and decreased airway clearance --> hence hyperventilation --> leading to air trapping/hyperinflation of her lungs and desaturations. We are THRILLED that her lungs look great as we feel that her airway issues are very manageable and less likely to cause major complications at the time of her Fontan. While we were there today, her cardiologist decided to go ahead and sneak in an appointment for an update as well. She is overall thrilled from a cardiac standpoint of how Addy is doing. They did a cardiac reconstruction using the contrasted CT today to take a look at her heart, but unfortunately they weren't done with the reconstruction yet. We hope to have those results by Wednesday but we are not expecting any surprises. Dr Kavanaugh has put in the request to schedule her final surgery, and we are expecting it to be the first or second week of September. We are trying to work around several things such as Heath graduating with his Pediatric NP degree and taking boards in August, and me (hopefully) starting the program in August. She was 22.6 pounds today, although she feels much heavier when we are carrying her around! Hopefully next week will provide a new set of information as we work to slowly piece together the mystery of Addy's breathing difficulty. She wouldn't be mine and Heath's child if she did everything as expected, but that is what makes her so special! It doesn't seem like it has been so long that we should be discussing when her final surgery will be! She is growing up so fast and is rapidly becoming a little girl instead of a baby! We were so proud of how well she did today, she didn't cry or freak out one time while people were doing the necessary things such as blood pressures, EKGs, and assessments! Here are a few pictures of the last day or so. I will try to update as we find out more information. We would like to thank everyone for the prayers and support!<br />
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The night before any procedure or surgery, I always feel the need to take a few new pictures of Addy girl. I guess it's because you really never know what tomorrow will bring and I want to remember every day I can along the way. Here she is playing in the "baff", which is a favorite activity of hers!<br />
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<tr><td class="tr-caption" style="text-align: center;">Ha-Ha-Ha, this is great fun!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1RlvcRBJ8V3Nx6PP2xkqa6hiM48Jwm_egkv4ebvZWSwqr-njVabZfBmwRHhsaQVrwa8hjkfPdU6QZ5zqf2K8v91I9Oo_khq0GZTWhqsYVTFN-1VMx8GvYKlNRfIry0IOLYwd4ETn2Y5L2/s1600/IMG051812-007+%2528rev+1%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1RlvcRBJ8V3Nx6PP2xkqa6hiM48Jwm_egkv4ebvZWSwqr-njVabZfBmwRHhsaQVrwa8hjkfPdU6QZ5zqf2K8v91I9Oo_khq0GZTWhqsYVTFN-1VMx8GvYKlNRfIry0IOLYwd4ETn2Y5L2/s320/IMG051812-007+%2528rev+1%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Where's Addy?! I can't see you!" She loves to play peek-a-boo!</td></tr>
</tbody></table>
On the way to the hospital this morning she was subdued, she takes after her mommy and is not a fan of being woken up at 5 am! I did manage however to get one of those beautiful smiles out of her though! Of course she has her special blanket and "Bearie Manilow" for the day, our essentials for any hospital visit!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn0AisQtLRNKE_LdYAxIZj3B2ddxLrlnzv9NjWTqkuAk5PG-_A9kQqAkU0V2n81RFjlnvc6KYrp4SVUTWJpwH28vx3L35klRcjCsKnhKQYVAEelN64cjWeptBYNqXkPp1JhmbHMGZLHnei/s1600/IMG051812-011+%2528rev+0%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn0AisQtLRNKE_LdYAxIZj3B2ddxLrlnzv9NjWTqkuAk5PG-_A9kQqAkU0V2n81RFjlnvc6KYrp4SVUTWJpwH28vx3L35klRcjCsKnhKQYVAEelN64cjWeptBYNqXkPp1JhmbHMGZLHnei/s320/IMG051812-011+%2528rev+0%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love that smile!</td></tr>
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As a reward, Daddy had to make a trip to the hospital gift shop for a surprise! Here she is playing with her new Elmo and Grover puppets and her cow! Every time she goes into the hospital we get her a stuffed animal for being such a brave warrior. I think by the time she is 5 we will have every animal on the planet but she is worth it! She is so brave and special, we would buy her the world if we could for what she goes through!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxi4PW7HD4KL06R9giH0aITbGKRZT_wHjCU-5pWj0pSVW3KQlZLKYHyph3cxDcXTy1qPhbTUZf7pY-stOFAY_NozKpKgRutBOvTmg9LYtem08Y322co7d6iLxOLrQFRpanHvpD2uaYmK5q/s1600/IMG051812-013+%2528rev+0%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxi4PW7HD4KL06R9giH0aITbGKRZT_wHjCU-5pWj0pSVW3KQlZLKYHyph3cxDcXTy1qPhbTUZf7pY-stOFAY_NozKpKgRutBOvTmg9LYtem08Y322co7d6iLxOLrQFRpanHvpD2uaYmK5q/s320/IMG051812-013+%2528rev+0%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kiss Kiss Elmo & Grover!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Aww, she loves her Sesame Street friends!</td></tr>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5127246076398203564.post-38008121270470384012012-05-04T09:01:00.005-07:002012-05-04T09:01:49.314-07:00A Day To Remember<div class="separator" style="clear: both; text-align: center;">
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Today marks the 2 year anniversary of when our families whole world changed. At the time, it felt like the worst thing to ever happen in my life. During a routine ultrasound when we were 24 weeks pregnant, the doctors discovered Addy's heart defect. I don't think I will ever forget the feelings that I had in those next few moments and days. I wrote in a journal to help me cope with what we were going through. Looking back it seems like it was so long ago, and I realize just how blessed I am.These are some of the words I wrote that day....<br />
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<![endif]--><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;">"When the ultrasound was over, she asked us about screenings we had chosen or if I had any
history of diabetes or hypothyroidism. Immediately, Heath and I knew something
wasn’t right, that was a big red flag. When she left out of the room to show the pictures to the doctor,
we had a sick feeling, we knew something was wrong.... When Dr Boehm came in,
he sat down in front of us. That’s never a good sign. He said the words “We
think your baby has a complex heart defect”.....those are the words I will never forget, or the feeling of suffocation that followed immediately after....he didn’t just say those words. I looked at Heath and he had
the same look on his face. He said “it looks like a corrected transposition…and
a double outlet right ventricle…” and then he said the one thing in the world
that we dreaded most. He said “… and it looks like there is a small hypoplastic
left ventricle”.....<span style="color: black;">and that was what would start our journey that would lead us to where we are today" </span></span></div>
<div style="color: blue;">
<br /></div>
<br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;"> The next day we had her diagnosis confirmed by fetal echo with Dr Soslow and Kavanaugh. It would turn out that Addy had a hypoplastic right ventricle, double inlet left ventricle, tricuspid atresia, corrected transposition, and a small aorta/outflow obstruction. Most of the rest of the story is history but has changed our entire lives. Remembering those initial weeks after diagnosis, Heath and I were a wreck. Our knowledge as pediatric cardiac nurses was damning. I will admit that we hesitated to buy much of anything before she was born because of our overwhelming fear that we wouldn't be bringing her home. As a nurse, you often don't remember the happy endings. You remember the sad outcomes of precious children that fight for their lives for months and months before their bodies can finally take no more. That is what we anticipated for the remaining 16 weeks of pregnancy. Thus far, our course has been far better than expected, although not without its own bumps along the way. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;"><br /></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;"><br /></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;">Today, I am grateful for every single day that we are blessed to have Addy. She is truly an exceptional child, and I'm not just saying that because she's mine! She is 20 months old and not quite 23 pounds. She's petite, but unless you looked closely, you would never know she has a special heart. She is so smart, her vocabulary matches that of most 3 year-olds I have seen. She is stubborn and independent, which I think will only help her in her lifelong journey. She has a smile that melts my heart, and is an incredibly happy child. There is nothing that she can't do (besides walk very far) and she makes every effort to do things just like her big sister Maci. Her favorite activities are playing with her pet "chicks" and all the other farm animals. I do not take a single day for granted, and give her as many kisses and hugs as possible. We are anticipating her final Fontan surgery coming up in August, pending we are able to identify what her pulmonary issues are that keep causing her problems. My heart rate rises every time I think about August. A part of me (and Heath) has not quite fully accepted that we are going to be blessed to have Addy for a long time. I hope that after the Fontan the feeling of waiting for the other shoe to drop will subside and we will just be able to watch her grow into a little girl. Once again, our nursing knowledge is a curse and a blessing. I never imagined 2 years ago that we would be where we are today. I could not have asked for more. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;"><br /></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4BJJMhGkE3JBZMLirkFCd6Jj0SKVPIqQ4m1le8OrNrUQINrsVlG2eV-W-c1P5OuL2WCfJCN7-4S-IAkuWN2fawTqJvAkeMn0wjHSYbP79qGVCJ_hdeVnDgx_3zb5GmHpDpThODS-btpDZ/s1600/IMG050412-002+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4BJJMhGkE3JBZMLirkFCd6Jj0SKVPIqQ4m1le8OrNrUQINrsVlG2eV-W-c1P5OuL2WCfJCN7-4S-IAkuWN2fawTqJvAkeMn0wjHSYbP79qGVCJ_hdeVnDgx_3zb5GmHpDpThODS-btpDZ/s320/IMG050412-002+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loves her Cookie!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjICQigsl12C7EpNQbmv4R11hdcfWQQk-dcPfK3-fhuhYQqBahZdf6k0BjInPoywVXoZhSS-aG0XaLy5zNG28hXYgyVI89AKs7UcgnKKhqGcevfnFIopAeuXVaF8N8_jaOls2GuX7A-iYL_/s1600/IMG050412-003+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjICQigsl12C7EpNQbmv4R11hdcfWQQk-dcPfK3-fhuhYQqBahZdf6k0BjInPoywVXoZhSS-aG0XaLy5zNG28hXYgyVI89AKs7UcgnKKhqGcevfnFIopAeuXVaF8N8_jaOls2GuX7A-iYL_/s320/IMG050412-003+%28rev+1%29.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Add caption</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8KKvzwbAa9g3r_JHuwYBhXPJS0XeAxrxvSc8KLjhj-K5TzMaNy3k3cVl6eqC5pGTUimOauFvCtcbua9h-rPzIurajKX7BTXhZuhGd5pXm4IT3T8qSpvIvnpEWZipoYikOCuCifBjrojKF/s1600/IMG050412-005+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8KKvzwbAa9g3r_JHuwYBhXPJS0XeAxrxvSc8KLjhj-K5TzMaNy3k3cVl6eqC5pGTUimOauFvCtcbua9h-rPzIurajKX7BTXhZuhGd5pXm4IT3T8qSpvIvnpEWZipoYikOCuCifBjrojKF/s320/IMG050412-005+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Such a cutie!</td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-26171640136837745392012-02-05T19:13:00.000-08:002012-02-05T19:13:44.478-08:00How Time Flies!I absolutely did not realize that it had been so long since I had updated Addy's blog. I guess that we have just been so busy with enjoying every minute with our sweet girl that almost 6 months has flown by! Things here at home have been pretty good except for the loss of our Great Pyrenees, Hank this week. He loved cars, and that ended sadly but now he is buried up on the hill and will always be part of the farm. I was in a car accident a few weeks ago where my car was totaled, but thanks to seat belts had no major injuries. Maci is now wearing glasses and working her way through the rigorous Kindergarden curriculum much better! Hunter is doing well and just got a clean bill of health from his yearly St. Jude checkup. Heath is currently in clinicals for school so between that and work he is occupied pretty much 6 days a week. I'm still working 2 jobs as well and doing my school online as well. All of our farm animals otherwise are doing well, all the animals are ready for spring to come along with green grass!<br />
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Let's see, Addy is doing amazing in terms of normal baby stuff. She runs everywhere she goes, until she gets too out of breath. She has an exceptional vocabulary for 17 months if I do say so! Her favorite activity is watching Elmo on Mommy's Kindle Fire! She is saying 2 word phrases now and lets you know exactly what she wants! She had a sedated echo in January that looked completely perfect except for that pesky Left Pulmonary Artery that is still 3 mm. However, the vessel past that small part is growing nicely so that means that there is still good blood flow and it should make it until the Fontan. Dr Kavanaugh said that Addy's hemodynamics (the pressures and measurements of her heart and vessels) are perfect and probably the best she has EVER seen, and her ejection fraction (function) is nearly normal for even a whole heart! Our only concern is that she continues to have a large amount of activity intolerance. It is true that she should get a little more tired than normal children, but in absence of any lung problems, she shouldn't get "out of breath". Even our cardiologist admits that while playing and walking around the room, her work of breathing is significantly harder than most. She has absolutely no explanation for why Addy is absolutely huffing and puffing after approximately 20ft of walking. We have already had an airway workup that came out clear so our next step is a pulmonary consult to see if there is problem with her lungs. This will be this Thursday and hopefully give us some additional answers. While we don't want something to be wrong, if there is, we want to know about it before the Fontan when she is intubated and we completely change her pulmonary flow and pressures. Otherwise, the plan is to do another sedated MRI (pentobarbitol for the sedated Echo in January was a NIGHTMAERE, so we are doing MRI instead with ketamine/propofol) in April or May and if at all possible she will have her Fontan around August when she turns 2. She is still growing slow and steady, not as fast as I would like, but she is still hanging between the 25-50% percentile on the growth chart. The good thing is that she absolutely loves food, so she gets to eat whatever she wants as long as it has lots of calories! Luckily, she also loves her fruits and vegetables, and eats those way better than Maci does! On a sour note she will be losing her Tn Care this month, so all of the extra bills that our insurance doesn't cover will now fall back on us, I imagine that we will be in medical debt the rest of our lives so I am working on coming to peace with how the whole government system works and who qualifies for assistance. I think those are the highlights for right now. I am posting some new pictures of her so everyone can see how much she has grown. She has turned into a toddler right under our noses!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6YUvBb2oPwoBOz1GLyPkvaSxPWK_mZVxue-3wD_kHwPH0zhdYENogVHZCJFith-eAw3mv4ARMURGNKAYyEmMWt0TswUatKeeeRaxei0nfAwP4iK-H0IXfjwT3MIbJyfHvT-A-gxIjAcFw/s1600/IMG020512-006+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6YUvBb2oPwoBOz1GLyPkvaSxPWK_mZVxue-3wD_kHwPH0zhdYENogVHZCJFith-eAw3mv4ARMURGNKAYyEmMWt0TswUatKeeeRaxei0nfAwP4iK-H0IXfjwT3MIbJyfHvT-A-gxIjAcFw/s320/IMG020512-006+%28rev+1%29.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addy loves watching all the animals from the front porch! She knows all their names- goats, sheet, geese, and chickens!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX1xY0JzUVbGypt26PcJyEs6YED0nFDkpILFYKWoIRy9cgxxJXA3jSkTBPZDr4pAhFE24lMxcLZnpYEKEydB4KbEXjvwD0aZjT3QACHj8lzf4Doufd3Y5S-zbh1Jm7S5FPf2lznrcYQNcO/s1600/IMG020512-028+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX1xY0JzUVbGypt26PcJyEs6YED0nFDkpILFYKWoIRy9cgxxJXA3jSkTBPZDr4pAhFE24lMxcLZnpYEKEydB4KbEXjvwD0aZjT3QACHj8lzf4Doufd3Y5S-zbh1Jm7S5FPf2lznrcYQNcO/s320/IMG020512-028+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a normal day of mischief for Addy! Looks like she's getting ready to swing from the pig's leash!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_TpwcRT5NxNqRz6_xk9sjmCaB6tR5AGX5xZqDz-zHvGrB7swVkjoyMq7WbHnyAqOcpa9Pi-SW0ZEwh2OgYmylCPA_ndiFrSe04bwuuFXeWs8QtjLzT57mzcq6U5zfp0mLHlGut8N84-Xy/s1600/IMG020512-031+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_TpwcRT5NxNqRz6_xk9sjmCaB6tR5AGX5xZqDz-zHvGrB7swVkjoyMq7WbHnyAqOcpa9Pi-SW0ZEwh2OgYmylCPA_ndiFrSe04bwuuFXeWs8QtjLzT57mzcq6U5zfp0mLHlGut8N84-Xy/s320/IMG020512-031+%28rev+1%29.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Oh Elmo, how I love thee!" She loved this balloon so much I couldn't bear to throw it away so we just hung it up!</td><td class="tr-caption" style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwwzJaEwLx9QN5u347PCPSTO4eCUdzX8hzZCg9wnCTYUK817ZiqTx97lbdJ2JfnUQIzvrPFFl74R3rNjYMgvLEJUlBrrWblK0TDxHLxaFJUmxMXemK3SR9CbhOm7aDtWAlLeyzHKtr7eaa/s1600/IMG020512-046+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwwzJaEwLx9QN5u347PCPSTO4eCUdzX8hzZCg9wnCTYUK817ZiqTx97lbdJ2JfnUQIzvrPFFl74R3rNjYMgvLEJUlBrrWblK0TDxHLxaFJUmxMXemK3SR9CbhOm7aDtWAlLeyzHKtr7eaa/s320/IMG020512-046+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun times playing in her room!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFRe36FL_-R-uZRUUl92us1q9jPUdmu9Bhprss4nS2IPWc-NOP5UxHQJdD2HG-8-UHO82ObiVwOpJlwmvOkwk_Sze-fEEXW8qmXr0FCuChsHRnZ9VVR8Gne1U_Bq_f_rjf9DUgv24tuYcM/s1600/IMG020512-061+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFRe36FL_-R-uZRUUl92us1q9jPUdmu9Bhprss4nS2IPWc-NOP5UxHQJdD2HG-8-UHO82ObiVwOpJlwmvOkwk_Sze-fEEXW8qmXr0FCuChsHRnZ9VVR8Gne1U_Bq_f_rjf9DUgv24tuYcM/s320/IMG020512-061+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addy's first Christmas at home, her first ever was spent at the hospital!...does anyone see an Elmo theme yet?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWcthQFR6qZM_URSQlRxokthEJs1ck-1vtyaZmjfL_adCBHpVYeICZH1jqmp4rhYm-9KZ4hqFr7CLCgF_ugJWG77VCw7hCiUHjtl7cr0t6tddEdvut5VcqhHPhhtHpNeNLz23dzlKClLOM/s1600/IMG020512-091+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWcthQFR6qZM_URSQlRxokthEJs1ck-1vtyaZmjfL_adCBHpVYeICZH1jqmp4rhYm-9KZ4hqFr7CLCgF_ugJWG77VCw7hCiUHjtl7cr0t6tddEdvut5VcqhHPhhtHpNeNLz23dzlKClLOM/s320/IMG020512-091+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addy & "E-la-la" (Eli), she thinks it is her most important job to feed him his bottle!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsCyjRLcTte4zBRcmQggSlbvlQCv1RkpKBLEJkM-oBdMqr4VYHu_ZYnilDHHIyDIIEOLGSjSy4Pg28lCL2QoqOy31mEYKWVT__LmHSk8RRijB8bytqGnqpJWHd3FTndhUTPkZ_tYvhoTS6/s1600/IMG020512-096+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsCyjRLcTte4zBRcmQggSlbvlQCv1RkpKBLEJkM-oBdMqr4VYHu_ZYnilDHHIyDIIEOLGSjSy4Pg28lCL2QoqOy31mEYKWVT__LmHSk8RRijB8bytqGnqpJWHd3FTndhUTPkZ_tYvhoTS6/s320/IMG020512-096+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing outside on the rocks!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin1wMQCtBv723QOwYUTzUPZo60hwl6pPghmZSIkNdARBWlP5Wq2aPrjm41-69pLcUHFuUeX4kRFw71g31K9w7WOYT3bddp6B-2-_vzFpZqk2XE00G9vnaiSBVgupMatlCrtLSKlEoGjxW8/s1600/IMG020512-116+%28rev+0%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin1wMQCtBv723QOwYUTzUPZo60hwl6pPghmZSIkNdARBWlP5Wq2aPrjm41-69pLcUHFuUeX4kRFw71g31K9w7WOYT3bddp6B-2-_vzFpZqk2XE00G9vnaiSBVgupMatlCrtLSKlEoGjxW8/s320/IMG020512-116+%28rev+0%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Checking Peggy's gums for gingivitis! Peggy is as gentle as a lamb, lets her do whatever she wants to her!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNLdDYvz65_1Y6pxqdL2GvKs78M41GSTfhQ-RTHy4klX2k-tiNbJlUBVevKmYo-e1-0M-_NYVprbAW9j-vf_bmaz9jWO7XoBt6nRvh3tv_xjIHN6YI_yXbvMmQGnM_g_rEkELyEJHy5kKX/s1600/IMG020512-117+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNLdDYvz65_1Y6pxqdL2GvKs78M41GSTfhQ-RTHy4klX2k-tiNbJlUBVevKmYo-e1-0M-_NYVprbAW9j-vf_bmaz9jWO7XoBt6nRvh3tv_xjIHN6YI_yXbvMmQGnM_g_rEkELyEJHy5kKX/s320/IMG020512-117+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OK mom, I'm done walking, come get me!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbdKUS2UHNBjgAgupkmPQ0eqCNoAihilecum11meU9GRINs33A2A8HE2OISed_d7RU0bd7dAq9RKweboEvxRpchVGDvaGZHlbQYn8T7Z0cnL4fm1AFyuqVjwcR86IOTXf_1Wr3dX8_qQPb/s1600/IMG020512-128+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbdKUS2UHNBjgAgupkmPQ0eqCNoAihilecum11meU9GRINs33A2A8HE2OISed_d7RU0bd7dAq9RKweboEvxRpchVGDvaGZHlbQYn8T7Z0cnL4fm1AFyuqVjwcR86IOTXf_1Wr3dX8_qQPb/s320/IMG020512-128+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This little table set is just her size! She was calling "keeety" (kitty) over to sit with her!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1IHa-xVH5I6BBCUuzyR9s31QAXp9-CBbq4cHxoQ-x0LGeHo0kv-DmKD7f8rdAWX0XbrtdDe1olBmad6TSWvYrOneMpF67BAO1ZeBHH-JISpAxImis_XQRUDclYzUxDgOe2CCGVGQQayEy/s1600/IMG020512-131+%28rev+1%29.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1IHa-xVH5I6BBCUuzyR9s31QAXp9-CBbq4cHxoQ-x0LGeHo0kv-DmKD7f8rdAWX0XbrtdDe1olBmad6TSWvYrOneMpF67BAO1ZeBHH-JISpAxImis_XQRUDclYzUxDgOe2CCGVGQQayEy/s320/IMG020512-131+%28rev+1%29.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Inside chilling with her Boost drink, Cookie, & Rooty! She looks like she runs the show!</td></tr>
</tbody></table>These were just a few of the highlights over the last few months. I will try to keep up better with the postings, especially as we get closer to our final surgery!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-60768751022114178542011-09-29T14:42:00.000-07:002011-09-29T14:42:15.677-07:00This is one of those nights that most parents never dream of, but heart parents face repeatedly. The night before a procedure with their child to which the outcome is uncertain. How do you explain how many times in the last 3 days I have teared up while thinking of the possibilities? How do you explain that gut wrenching feeling that you get every time you think about the next few days? How do you explain to co-workers who ask if you are ok that-no, in fact, I'm barely hanging on- but I won't let my children see that. Tomorrow, we will hand Addy over to the trusted nurses, anesthesiologists, and cardiologists- and pray that they bring her back just as she is. Some people say, "oh, it's JUST a cath". It's never JUST any procedure. For a child with a single ventricle functioning heart, something can go wrong with the simplest of procedure. Sometimes the heart doesn't like being probed with catheters, and sometimes lungs don't like being ventilated with an endotracheal tube and machine. For Heath and I, we have seen the cath cases that go wrong. Yes, it is less risky than surgery. But there is also less support there and no one "expects" things to go wrong as with surgery. How often we have seen it go not as expected. We have met some wonderful people through mine and Heath's experiences as being heart nurses, and now heart parents. We know that Addy has many guardian angels watching over her, both living and passed. <br />
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We were actually semi-prepared for her cath to be next Wednesday. Then on Tuesday, Dr Doyle's nurse informed me that he was going to be out of town, but there was a cancellation this Friday....Whooosh, that's my breath being sucked out of me and my heart skipping its own beats. Of course, we will take the slot, because otherwise it means waiting until after Thanksgiving, and Addy needs this now. Then again today, Mary Beth called me. I really hate seeing the Vanderbilt number and it not being my husband on the other line (calling me while he's Sooo busy at work). She said Dr Doyle's first case tomorrow was sick, so would we like to be there at 6:30 instead of 11? Again, that annoying sick feeling in my chest of my heart pounding...of course, it would actually be better so that Addy isn't a bear by 11 am and being NPO all morning. We do whatever we have to for her, no question about it. But please people, my sanity can not take one more curveball before this procedure! Preparing for a procedure is kind of like preparing for taking a huge test. You've got it all worked out in your head where the other kids need to go, what I need to do that morning, what time we need to leave, when should I be packed by....then someone tells you that you are out of time! Where's the Xanax?<br />
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So tomorrow, we will wake our sweet baby girl up from her crib, and put her in the car at 5:30 am. She will not know where she is going or why, but her favorite Bearie Manilow will be there, along with a pacifier as a backup. We will sit and hold her, trying to remember every moment with her, before they take her from my arms. Then wait. Wait for that voice on the other end giving good news, not bad. How many times Heath and I have been the ones that have been on the other end of bad news, it is totally different when you are the recipient. I'll wait for the moment that I'll see her again, safe and sound. I'll give her as many extra kisses and hugs as I can until then.<br />
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I will try to update again tomorrow night, as well as my FB page throughout the day. With any luck, Addy will be the trooper she has always been, and we will be resting in a room on 6C 24 hours from now. For now, I pray.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-44702375811459883232011-09-15T18:46:00.000-07:002011-09-15T18:46:55.375-07:00We have a bug! :(Our cath has been moved up to October 5th. Hopefully at this time the cardiologist will do something with that L-PA so that she doesn't have to work so hard to play & breath. However, Addy likes to keep us on our toes... we thought Addy was teething...well actually she is. But it looks like after 4 days of watching her, she also has some sort of respiratory virus. I have watched her sats of the last 2 days while she plays (before she really got sick) and they were only running 60-75%. This is not good for her. The minimum her sats should be is 75%, although most of the time she should be 80-85%. I spoke to her cardiologist today and we have an appointment with her PCP in the morning. She hasn't eaten or drank too well in the last few days. The problem with Addy getting a virus is much more complex than a normal child. When your heart is already working harder, you don't really need or want a virus to make it work harder. Also, when she is working harder to breath, the vessels (that are already small) going to her lungs are affected, hence she has less reserve before she gets into respiratory trouble. She has been quite much more out of breath the last few days. I truly hope that when we wake in the morning and go to the PCP, she makes me look like a fool by acting just fine. Her cardiologist and I agreed to give her through the weekend to get over her illness, and we will re-evaluate her sat & activity intolerance issue next week (if we don't wind up in the hospital before then). If we still feel that she is progressing in her out of breathness, with low sats, her date will be moved up again to the next week or so. For now, I will continue to post until I know a more definitive plan. It's really not up to us, Addy drives this boat!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-38034588653554682552011-09-08T19:44:00.000-07:002011-09-08T19:44:02.313-07:00New Cath PlanWe called Addy's cardiologist last week because since her MRI, she has progressively worried us more. Our Addy has never been much of a napper, but over the last month, she is rarely awake anymore! Our typical routine has been that she sleeps until about 9am usually until I wake her up. She eats breakfast and by 10:30 she is ready for a 2 hour nap. About 12:30-1:00 I wake her up and she eats lunch, then a snack about 2:30, then it's back for a nap from about 3-5. She is awake then to eat dinner and by 7 she is ready for bed again. So on average over the last month she is only up about 5 hours a day! I have had trouble even getting 3 meals & 2 snacks a day into her because she is sleeping so much. She is resting much more often while playing, sometimes she just lays down on the floor mid crawl and rests- this never used to happen. She also is much more cyanotic while drinking and gasps to catch her breath. Six weeks ago she was taking 5-6 steps on her own at a time, but since then, she has completely quit trying and just has reverted to crawling Although increases in sleeping can be attributed to growth spurts, over the last month, she hasn't even gained 1/2 pound. That is also significantly down from what she has been gaining, which is probably due to less intake and harder work.<br />
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So after calling cards last week and basically demanding a sooner appt, and taking her to the PCP in the mean time to prove that she wasn't otherwise sick, they saw her today. Basically we know that her L-PA is small (3mm) and was going to need to be augmented. However, they were hoping to wait and augment it with an early Fontan. Our cardiologist explained that a lot of times kids can have small PAs and never even be symptomatic, so there isn't really a reason to explain these changes. However, we know our child, and this isn't her. I understand that children this age wine and have a certain amt of difficultness, but we can't even take her anywhere bc she is so tired she makes everyone miserable with squealing and crying nonstop. Luckily, our cardiologist does trust our judgement and after over 1 month of this, she feels that the safest thing is to go ahead and move up her cath date. They can get pressures at the very least and make sure that everything else is ok and their is no cardiac reason for this- or if their is then hopefully discover and fix it. Although this means a sooner procedure, it actually somewhat puts us at ease. My biggest concern is that Heath and I watch our daughter slowly work harder and tire out over the next 4 months, then go into cath or surgery week because she has lost all of her reserve. We know now that she is strong, and she will do good, but I'm not going to watch her suffer and then have them tell us she's too weak for intervention 6 months down the road. <br />
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Ok, enough update about the sad and depressing stuff- now I want to update everyone on what good things she is doing! Addy is quite the little talker- so far she says uh oh, no, yes (just tonight!), mama, dada, I did it, hey there, kitty, stinky, & hello! OK, so these aren't always crystal clear, but you can definately tell what she is saying! Even though she isn't walking free-style, she is breaking speed limits in her walker, and her favorite thing to do in it is run full speed ahead! She knows where her belly button is. She still loves to eat everything that is put in front of her, and usually wants to feed herself.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbrWN52RCT82hi7nIxwQ8LbrW5-LFQOrPj-bZe4j4z25FpEgR-9o5Hrfr6rlevZMz0_awlWaVZPrfGPyelQKb7vHawXbdiXZx_ulc6gsMKgKdwbfYLEkFMFsNyXSVMBt79e_yqwMEE6cb5/s1600/CSC_0232.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbrWN52RCT82hi7nIxwQ8LbrW5-LFQOrPj-bZe4j4z25FpEgR-9o5Hrfr6rlevZMz0_awlWaVZPrfGPyelQKb7vHawXbdiXZx_ulc6gsMKgKdwbfYLEkFMFsNyXSVMBt79e_yqwMEE6cb5/s320/CSC_0232.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She wasn't too sure about it to begin with, but once I put her in my lap, it was on like Donkey Kong!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZIJIfGSeeCLaumK9V4msVb0zI81M5J03FIYEPdCyarcNOgt4etsL4Y05C-2W4ndQn3KAQjQIpWe1XOC6MZmN6jOzQbXNtYrDuZ9VBYehvuCo87sFTDVcoW8LiH2PGIf9J5up9-kU9Z_N1/s1600/DSC_0078.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZIJIfGSeeCLaumK9V4msVb0zI81M5J03FIYEPdCyarcNOgt4etsL4Y05C-2W4ndQn3KAQjQIpWe1XOC6MZmN6jOzQbXNtYrDuZ9VBYehvuCo87sFTDVcoW8LiH2PGIf9J5up9-kU9Z_N1/s320/DSC_0078.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beloved Bearie, her security object, he stinks to high heaven, but she loves him! Even in sleep, he is nearby!</td><td class="tr-caption" style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuIv1EvFE3FYE2OS3L2M23IPHRu5hOA1gZ0evSxFCRJfGst2BxPMfA-BilS00d_BpJN6PbF8mYLm2kkVrXr3dmmY9qToUON7ldaiUTRpSISXQQD9rPmUhxNO-gUKfQq_TX-zA1jSs7Yl_o/s1600/DSC_0206.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuIv1EvFE3FYE2OS3L2M23IPHRu5hOA1gZ0evSxFCRJfGst2BxPMfA-BilS00d_BpJN6PbF8mYLm2kkVrXr3dmmY9qToUON7ldaiUTRpSISXQQD9rPmUhxNO-gUKfQq_TX-zA1jSs7Yl_o/s320/DSC_0206.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Those big blue eyes, who could say no to her! She really enjoyed her cake for her 1st Birthday!</td></tr>
</tbody></table>I have talked to other heart parents and read blogs where they often cite the same things that I think and feel everyday. Every single day, I think about the future and what could be. I kiss my daughter and hug her every chance I get because who knows when their won't be a tomorrow. Every smile and new thing I want to take note of and remember. I don't ever want to take her for granted or quit being amazed at what she can do. Every picture helps me remember every moment that I can. I want Addy to know how hard Heath and I will fight for her, and when she gets older for her to be able to fight for herself. I want her to grow up to be a strong, independent woman. I want her to be able to have a family, fall in love, and have a child. I don't know if all of these things will happen, but I thank god for today, and for tomorrow, and pray for thousands of tomorrows to come. And this is why, with the fierceness of a mother bear, I will fight for her every step of the way. I am a heart mother.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-8263880028877697342011-08-19T05:40:00.000-07:002011-08-19T05:40:25.244-07:00HAPPY BIRTHDAY ADDY!As many of you know, Addy had her cardiac MRI last Friday. The reasoning behind it was because they were unable to visualize the Left-PA, or vessel that feeds her lungs blood supply. We were hoping it was just because Addy was being an uncooperative patient (imagine that!) but that unfortunately is not the case. Addy's L-PA is only measuring 3mm at this time. Enough for her to get blood supply, but way smaller than it should be. This means that it is not growing as she grows. Unfortunately, this is often a problem area because of the Aorta lying on it can compress growth.<br />
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Our team of highly intelligent doctors presented her at cath conference yesterday. Cath conference is the weekly meeting where all of the cardiologists and surgeons get together and discuss (or argue) about what the best plan for complex patients who are looking at surgery. If you ever want to see what your friendly cardiologist REALLY acts like, sit in on one of these meetings! All the sudden there are so many egos in the room that you never would have even suspected from the nicest cardiologists (note I didn't say cardiac surgeons as their egos are usually already apparent).<br />
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So that plan that they have come up with is this...normally the last stage of palliation surgeries is done in the range of 2-3 years. They usually have a heart cath done about a month or so before hand to look at pressures and make sure they are ready for surgery. They have decided to move this cath for Addy up to in the next 3-6 months. At the time of the cath their are several things that can happen. The goal is to be able to go in there, take a look around, and hopefully see that the vessel is big enough and they don't have to do anything. If this is the case, Dr Bischell will surgically augment it at the time of the Fontan while he already has her chest open. The second option is that the vessel will need some sort of intervention right then in which case the first option of that would be a balloon dilation. This is commonly done but carries its own risk when you think about stretching something with a balloon sometimes things tear and that would be very bad. The second option that could happen during a cath is that if the vessel is too small to balloon, they could have to place a stent. A stent would physically hold the vessel open in that spot but would also be harder to work around during the Fontan. Dr Bischell would prefer that they not do anything to the vessel until he gets in there. That means there is also a chance that if they get in there they could decide right then to take her on and do the Fontan that day. If they are just able to do the cath and get out, the date for the Fontan would probably be pushed up until she is about 16-18 months. If she were to lose complete blood flow, it would be life threatening, hence why it is so important to do something now.<br />
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This is not really news that we wanted to hear the day before Addy's birthday, but unfortunately this is our life. Many people don't understand that having a child with a hypoplastic heart doesn't mean that they can "fix" her in 3 surgeries and she will be fine. The reality is that these kids will continue to need echos, caths, and surgeries throughout their lifetime. Many have to go in for "tune up" type surgeries because, as in Addy's case, sometimes things don't grow with the body like they should. Cardiac children also often have other multi-system dysfunction as well that takes the focus off of just the heart as a problem area. So please, although you may mean well by saying "oh well she only has one more surgery and then she'll be fixed", please don't minimize the true condition by forgetting that she may have a dozen more surgeries in her lifetime, after she is "fixed". Cardiac children endure more in the first few years than most people experience in a lifetime.<br />
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OK, now that I have updated everyone on Addy's Heart, I have more important news....TODAY IS ADDY'S FIRST BIRTHDAY!!! This day is so special to us because one year ago today we didn't know if Addy would make it to 1 week or month, much less 1 year! The last year has been a roller coaster of emotions but I wouldn't trade it for anything. Every day I am amazed by the things that Addy is learning to do, and I take no day for granted. A year ago today, I held my baby in my arms for the first time. She already had multiple IV's and was on medication to keep her alive until surgery, but she was mine! People often say "I don't know how you guys do it" Yes, we both work at the place that our child frequently visits, we have 2 other kids, and we are both in NP school full time- call us crazy. But this is our life. I wouldn't change a single part of it. When you're living something instead of seeing it from the outside, it's not an option. We didn't want our baby to have to go through so much pain throughout her life. But we are going to fight for her every step of the way, because this is our child. If it were yours, you would do it too. <br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5127246076398203564.post-34426639448128356932011-07-29T09:35:00.000-07:002011-07-29T09:35:42.615-07:00Our date for Addy's cardiac MRI & bronchoscopy has been set for August 12th. We will have to be there at the ungodly hour of 6am. They will do the bronchoscopy 1st about 8am, then anesthesia will take her for the MRI from 10-12 o'clock. We will expect to be in radiology recovery for most of the day but they said if she does well she should be able to go home that afternoon. It makes me want to vomit to think about the possibilities that can happen in the 4 hours that she is away from us. We know she needs this though. As she gets more active, (i.e. closer to talking all by herself!) she becomes more out of breath and labored with her breathing. She often has a dusky color to her lips that improves as soon as I pick her up and make her settle down. How much of this is normal? Who knows.... we know she will have some degree of activity intolerance, it doesn't seem to hold her back so that's a good thing.<br />
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On the other hand, this will take place exactly one week before Addy's 1st birthday! We are planning a little party to celebrate this occasion with friends and family. One year ago, we didn't know if we would get to celebrate a first birthday with Addy. We had no clue what the future would hold. While that remains unchanged, the last year has been one wonderful worldwind as we have gotten to know our baby and rejoice in every step she takes! I'm so proud of my baby girl, she is amazing. I have realized that the fear of what will happen in the future will never go away. I just have to love her every day that she is here and know she is meant for big things. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-15524661821211406622011-07-06T20:50:00.000-07:002011-07-06T20:50:08.929-07:00Hiccups along the way....<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVPOfr7pveQ8OSmrnnPJ-pK94RfMjiwWTzVKq1FK1Sj41VVhsW-5E6rfyjF_0_06rE4ftB1afHgGUFGBo3bWfmFbn9FYu3f31LimDKzy8_XXNlFghdg0TwrDYwEMZliJ66DbQyMYakpPDv/s1600/DSC_0024.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoGLSFv4lUaUhQg99osmndjn5gGBpjins6TMTgA-2mLBbLxrvl4WfelJoUmSnmjUuqGTryTY7fSzK1IvVccwgIDIZRC14tAwksTyIVfB0R2CnUutfv5wJP6FMg21gSE6U1c2Bta0QvIj-n/s1600/DSC_0948.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div> I love my baby so much...I can't tell you how many times a day I think that to myself...I don't know what I'd do if I lost her. Unfortunately, these are things that a heart parent faces every day. However, I don't think I could possibly take more joy than when my baby girl squeals at the sight of me, breaks out in a big cheesy grin, or makes a new noise/word. I wish that I could take a picture or video of every second of every day, so that I never forget a single moment...we never know when the last might be. That's why when we have those hiccups that are expected- having half a heart and all, it is so scary.<br />
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Our last cards checkup looked good except that they were unable to get very good pictures due to Addy's unwillingness to cooperate...but it did look like she might have some left Pulmonary Artery narrowing (that goes to her lungs). Hence, we have been waiting for 2 the last 2 months for Cardiology to decide whether we were going to have a sedated Echo (by sedation team) or a cardiac MRI (intubated by cardiac anesthesiology). After a few weeks of watching sats we decided that yes, in fact, her sats DO run in the 80's and we should be ok with the Echo. However, then Heath and I started noticing something....<br />
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Over the last few months, we have noticed that Addy makes a very peculiar sound when she cries. Now we are also hearing it at night while she sleeps sometimes as well as if she gets overly excited. Granted, my overly joyous baby doesn't truly CRY very often...although whining is a totally different story. When she cries we hear this rather loud and disturbing "eeeeee!" when she breaths in. This mommy (& daddy's) trained ears immediately cue in that this is not a normal sound (no matter what other people say!). Stridor. Not something we want to hear. When I think the word stridor this is what runs through this ICU nurses head.....stridor...laryg/tracheo/broncheomalacia....difficult intubation...airway trauma....trach...no beautiful words when talking.... OK OK, yea I know it's kind of twisted. But you can't turn off the ICU nurse in me and Heath...and we have seen that progression TOOOO many times. While this would not change how I love my sweet baby, no parent wants to go through that or have to make their child. So, we insisted on an ENT evaluation before we would allow them to decide on the Echo or MRI. Once again we are thinking in overtime of...stridor of unknown cause...sedated...unstable airway...bad situation.... Are all other heart parents brains thinking like this too or is it just our over education in the subject of possibilities that could happen?<br />
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So...we saw the ENT specialist today to ease Mommy & Daddy's fears. Although we have been told by several well meaning people that this can be a normal sound, you aren't going to convince us. Right off, Addy was not a fan of the fellow or the attending. It really PISSED her off that they dare to look in her mouth and ears. Those of you who have never actually met Addy might not know that she doesn't fit the profile of a "hypoplast" heart kid. She is bulldozer- hard headed, never tires (or doesn't stop if she does), not afraid of anything, and opinionated...just like her mommy & daddy! Needless to say, she let them know that their behavior was not going to be tolerated with loud screams- while at the same time demonstrating what we were talking about! So then they decided that they wanted to take a quick peek at her vocal cords by shoving this little camera scope up her nose....thank God we swaddled her because otherwise I'm fairly sure she would have decked them! See, when she still had that NG tube she was fairly used to having things put down her nose, then she didn't even cry. But now, I'm sure she thought that we were putting it back in or something because she was terrified! Luckily I had enough forethought to remember to make sure we had a pacifier, but more importantly "Beary Manilow". As soon as they finished and stepped back away from her she quickly calmed and shot them a dirty look while hugging Beary and clinging to me. I felt so bad for her! However, it did give us some answers....<br />
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So it appears that Addy has some extra skin that is kind of sitting up above her vocal cords that sometimes gets in the way when she cries, hence making the stridorous sound. Most likely this is an anatomical thing, not something that was a result of her previous intubations. Sometimes as kids grow, these pieces of extra tissue may grow as well, thus creating more problems. Most likely, nothing will ever have to be done, but it is good to know as it could potentially create more difficulty with accessing her vocal cords for future intubations. However, the doc would like to take a more thorough look at everything further down below the cords to make sure their is no other stenosis or narrowing that could also be causing it. So...that pretty much secures our future of a cardiac MRI. Sedation team is not going to be thrilled about sedating her with these questions and then they can bronch her at the same time as the MRI (which anesthesia will be present at). On one hand we are glad that we aren't crazy and neurotic overprotective parents that are making up imaginary things; on the other hand, I hope and pray that this is nothing that will affect her in the future. <br />
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On a lighter note, Addy is thriving in every other way! She is THE MOST active baby I have ever seen. As my mother tells me almost every day, "She's just like you!" She crawls amazingly fast, pulls up in a heartbeat, and is starting to play around with letting go of the furniture! She says "no,no, no" a lot, she has learned "uh-oh" and drops things a lot so she can say it, and seems to be repeating an assortment of other words. She is the only baby I have ever seen that actually whistles! I think it is because sometimes she purse-lip breaths to pace herself and figured out that she can make a noise when she does it. She loves playing in the swimming pool and is a true water baby. She now has 3 teeth and eats everything! At our last checkup she was almost 18 pounds, no puny heart baby by far! We recently went on vacation and she had her first trip to the beach! She didn't think much of the ocean, instead she spent more time in her baby pool on the shore! As I feel the need to photograph every event of every day, I have lots of recent pictures to post but here are just a few...please enjoy our sweet girl, we think she is awfully cute! <br />
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<tr><td class="tr-caption" style="text-align: center;">We just had one little pirate tooth here, but 2 more quickly followed!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br />
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<tr><td class="tr-caption" style="text-align: center;">Her first boat ride! The life jacket was bigger than her, she didn't smile like this for very long before it made her cranky!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEDYbMAB8gnZRSC-TvYLKfNi7GP2qaS6T88OrsF97ZN2QJqMhR8HEVuWn7AhbdFOibCARzkyhhmMNdziT-T9Ap_cY8usmaJYv9eM8H4AeTD8zyffLe1oh0s5DxrWLoPKKvlJ9OHoUVXM6/s1600/DSC_0957.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEDYbMAB8gnZRSC-TvYLKfNi7GP2qaS6T88OrsF97ZN2QJqMhR8HEVuWn7AhbdFOibCARzkyhhmMNdziT-T9Ap_cY8usmaJYv9eM8H4AeTD8zyffLe1oh0s5DxrWLoPKKvlJ9OHoUVXM6/s320/DSC_0957.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy & Addy!</td></tr>
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<tr><td style="text-align: center;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTNduRROZ1KdtLcSI3AKfisairXjWYBgVMh2LrFkamoVNdqmNROb2YgL8SWPMDGgaoWjHi0wX0GXk52EszowKKDvZu7tuqj0bj4KaBCQbmEPOt4nwGFlWLirK1fdTQmwrw-cNuucvsjV7B/s320/DSC_0946.JPG" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two peas in a pod! Maci is the best big sister!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4TwQazUyJ_McojtW2NYz5Ydu0gn8M3kgm8WqfhzOn6ExWjxpDluy89toNLB3mLVIG6Rz8FrIQWXWSCaxtTb2_kIkhB6QmG5MBZcjO-p1v2TXV3MY4hrT4HqTHu6tZ3U7AW0YpF7IMBPD5/s1600/DSC_0042.JPG" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4TwQazUyJ_McojtW2NYz5Ydu0gn8M3kgm8WqfhzOn6ExWjxpDluy89toNLB3mLVIG6Rz8FrIQWXWSCaxtTb2_kIkhB6QmG5MBZcjO-p1v2TXV3MY4hrT4HqTHu6tZ3U7AW0YpF7IMBPD5/s320/DSC_0042.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addy sure loves her piggy Mr Rooty! He was debating joining her for a swim!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br />
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</tbody></table><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTNduRROZ1KdtLcSI3AKfisairXjWYBgVMh2LrFkamoVNdqmNROb2YgL8SWPMDGgaoWjHi0wX0GXk52EszowKKDvZu7tuqj0bj4KaBCQbmEPOt4nwGFlWLirK1fdTQmwrw-cNuucvsjV7B/s1600/DSC_0946.JPG" style="margin-left: 1em; margin-right: 1em;"></a><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCYKtVe3Qga2ivfeN7J1_Ow-94I0px1AH-_eub2hQdQPjYp4DXzJy-r0E2JC2jHK_cUaIIgV5WPFm2LqTE272HW0KwwtIQqpTZ52pFgOWdw1s8TBo6KGM4QtJhKDjyDPiraL17NzlJiHeq/s1600/DSC_0900.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCYKtVe3Qga2ivfeN7J1_Ow-94I0px1AH-_eub2hQdQPjYp4DXzJy-r0E2JC2jHK_cUaIIgV5WPFm2LqTE272HW0KwwtIQqpTZ52pFgOWdw1s8TBo6KGM4QtJhKDjyDPiraL17NzlJiHeq/s320/DSC_0900.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mrs. Independent likes to stand all by herself now!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigbj0Iv1r2MpQJ1-rnYopdKNBd7HaoNZ0iXyOvKrMz9Vm8Kba4M2kTiOvqfjWLy9jO9o9RGQeQHVdv3efAjY8xZ9WWWPXcMhhtNVkXOMqP9IKrrTeLuAmqc0CiHRAg8TJ0Z7i1XFUaWmys/s1600/DSC_0953.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigbj0Iv1r2MpQJ1-rnYopdKNBd7HaoNZ0iXyOvKrMz9Vm8Kba4M2kTiOvqfjWLy9jO9o9RGQeQHVdv3efAjY8xZ9WWWPXcMhhtNVkXOMqP9IKrrTeLuAmqc0CiHRAg8TJ0Z7i1XFUaWmys/s320/DSC_0953.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The two drama queens, we are in trouble!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVPOfr7pveQ8OSmrnnPJ-pK94RfMjiwWTzVKq1FK1Sj41VVhsW-5E6rfyjF_0_06rE4ftB1afHgGUFGBo3bWfmFbn9FYu3f31LimDKzy8_XXNlFghdg0TwrDYwEMZliJ66DbQyMYakpPDv/s1600/DSC_0024.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVPOfr7pveQ8OSmrnnPJ-pK94RfMjiwWTzVKq1FK1Sj41VVhsW-5E6rfyjF_0_06rE4ftB1afHgGUFGBo3bWfmFbn9FYu3f31LimDKzy8_XXNlFghdg0TwrDYwEMZliJ66DbQyMYakpPDv/s320/DSC_0024.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rubber Ducky....you're so yummy! Water baby!</td></tr>
</tbody></table>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-69893222973969832112011-05-05T19:30:00.000-07:002011-05-05T19:30:31.298-07:003 month post-op checkup- almost 9 months old!I haven't written anything in awhile because things have been going so well. Addy is growing well and acting like a normal baby! She is up to 16 lb and 12 oz now! She is eating a lot of foods now but getting all of the formula in her that she needs is now a struggle again because she just doesn't want it! Unfortunately my child has taken after both of her parents in that she likes good food so she doesn't want to drink that nasty ole formula! She will drink water (or whatever I am drinking) out of a cup for the most part, but when you put formula in it she is like "no thanks!" We are now crawling....or scoot/crawling everywhere! My mother says that Addy is just like me when I was this age. I do not have a child that you can take to an event and she will will sit quietly on your lap. No, my child is flipping around in your arms, jumping up and down, turning upside down, and being a monkey! <br />
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Addy had her cardiology appointment today for her 3 month checkup following the Glenn surgery. On one hand it seems like we just had our last appointment. On the other hand it seems like it has been forever since we have seen them! Her blood pressures were a little higher and her oxygen saturations were a little lower than they like so that bought us an Echocardiogram compliments of the house just to make sure everything is ok. Clinically, Addy could not look better. She is nice and pink, warm, and active! Her echo showed that her arch is nice and wide open. The Glenn looks good and where they augmented her right pulmonary artery looks great. The only thing that is concerning that her left pulmonary artery (which looked fine at the time of the Glenn) was a little smaller than would be expected. This could mean 2 things 1.) They were just unable to visualize the area very well because it's difficult to see on a wiggly child... or 2.) this part of her pulmonary artery isn't growing along with Addy the way that it should. If this were the case, if it gets severe enough before the time of her Fontan, she will have to at some point go to the cath lab and have a balloon angioplasty done to widen it. Otherwise, they would aument it at the time of the Fontan. The only ways to tell for sure what this vessel really looks like are either by a sedated echo so that she isn't moving or by cardiac MRI (which she also has to be sedated for). A sedated echo is fairly simple, but they can only do it if her sats are above 80%. Otherwise, cardiac anesthesia will have to sedate and intubate her for a cardiac MRI...a little bigger of procedure then. So for now we are scheduling the MRI and I am going to monitor her sats (something we haven't had to do for 2 months) for the next few weeks to see if they really are running in the 70's most of the time.<br />
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I wouldn't say that I'm upset but of course I'm concerned. The concern never goes away when you have a child working off of half a heart everyday. I think it's almost like I expect something to be not quite right every time each time we go for a checkup. Addy has had a good run so far, but I know that no child is without the ups and downs associated with being a single ventricle. When Heath and I tell people about Addy, they often ask whether her heart can be repaired, and will surgery fix her. They think, oh ok, she is doing good so everything is great. If only it were that easy. How can I convey to people that even though technically 3 surgeries will "fix" her heart, that is only just to make it physically compatible with life. Over the years, she will still likely encounter these kinds of things. There will always be echos, caths, and EKGs to make sure everything is functioning just right. She will always stand the risk of going into complete heart failure and needing a transplant. There is a good chance she will need balloon angioplasty's or valve repairs, or some other kind of maintenance surgeries or caths in the future as maintenance. It's unsure at this time how much activity restriction Addy will have. Some kids run and play sports, but others just don't have the energy.<br />
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So immediately following our last appointment, Heath and I decided we were done with the feeding tube (see previous posts) Addy has done wonderful and as you can see according to her pictures, she looks perfect! She's not thin, but she's not a sumo baby (which cardiology likes to make by making tube feeding dependent children and leaving them on strict feeding regimens of high calorie formula for FOREVER!) Well, apparently Addy is only sitting at the 25% mark on the growth/height chart now. Her doctor said if she falls anymore, "we will have to consult with nutrition" First of all, last I checked anywhere between 10% -90% is considered acceptable. Second, if my child didn't have a heart defect and you looked at her, would she still be concerned? Third of all, after our last checkup when I asked about where we should go with nutrition they told me to talk to my pediatrician about it because she could handle it from now on- OK then, so butt out! Fourth, is the fact that Addy is almost 9 months old and my cardiologist is telling me that I need to make her drink more formula and eat less food...because the food isn't going to give her the calories she needs. I'm sorry...are we going in reverse aging? Last I checked as babies got older, they were supposed to eat more food! I just have a problem with the fact that as we near a year old, they still want us to shove this formula down her throat all day instead of eating like a normal child. At 1 year we switch to cow's milk, which is about 20 calories per ounce. Right now we are on 27 calories per ounce. So what are we supposed to do then- feed her formula until she's 2 years old? It infuriates me when doctors look at a chart which show's a Bell curve of what MOST children fall within and say that my perfectly nourished child is too small. Who exactly made this chart that says you're not feeding your child enough if they don't follow this curve to a T? Ok, so what I am going to do then is a nice little calorie count for the next 2 weeks to show them that she is getting plenty of calories, and growing just fine. I know my child better than they do. Sorry, that's my rant. Those that know me well know that the way they treat feeding and nutrition is something that I feel is a big issue with taking care of heart children, even at our "top notch" facility.The pics don't look like she has any trouble eat does it?<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB7VtRb6CBZCjQsK_taQX5TvdqtxfhZfh06szoXLCsEl35rNGL_wNYg49pXV66qr1ZAHRwhQc5hUa10zV9lLFTVpbhVz9I91i3VMaJIfqGx-w55PZv-_fyZuzXbzirqwOMnW_fzPQb2ZQs/s1600/029.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB7VtRb6CBZCjQsK_taQX5TvdqtxfhZfh06szoXLCsEl35rNGL_wNYg49pXV66qr1ZAHRwhQc5hUa10zV9lLFTVpbhVz9I91i3VMaJIfqGx-w55PZv-_fyZuzXbzirqwOMnW_fzPQb2ZQs/s320/029.JPG" width="320" /></a></div><div style="text-align: center;"></div> Baby girl loves her oatmeal in the morning!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvF804y3dzAH_CGiFC6nZo-irsZNZAdqOasosnTDV2Btv7Xn3z2Wbah5-qpMMnVOHMB7vTe_1lGK7ckBqZgWNqYgcO1O8n4tiEwyCbElISOTstfTbHnBDBnN8Y4HBH3DPXIzLtW30O9vnA/s1600/030.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvF804y3dzAH_CGiFC6nZo-irsZNZAdqOasosnTDV2Btv7Xn3z2Wbah5-qpMMnVOHMB7vTe_1lGK7ckBqZgWNqYgcO1O8n4tiEwyCbElISOTstfTbHnBDBnN8Y4HBH3DPXIzLtW30O9vnA/s320/030.JPG" style="background-color: black;" width="320" /> </a> </div><div style="text-align: center;"><span style="background-color: white;">Do I have any on my face?</span> </div><div style="text-align: center;"><br />
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Recently I saw a posting on fb about a single ventricle woman that had a child. In the past it typically hasn't been recommended for women with a SV to get pregnant due to the strain that it puts on even a healthy womans body, much less half a heart. Although some have been given the OK to get pregnant medically, the risks are still huge. Who knows where we will be in 20 years with care of these patients and how far technology will have come along to help them make it safer.This brought back the memory of the day that we got the definate diagnosis of Addy's heart condition. We were 24 weeks pregnant, and 24 hours before we thought we were having a healthy baby girl. Heath and I had just clung to each others' hands as we watched an echo that we knew didn't look good. The mourning had already begun before she even told us exactly what the details were. I remember our cardiologist going over all the statistics, options, and what the future looked like (Which we both already knew better than we ever wished) I remember her telling me that the likelyhood that she would ever be able to get pregnant and have her own babies was small. Something about that has always bothered me. For one, I feel like when we are discussing whether my child is going to live past infancy to adulthood or not, I feel like adding in the second left hook that, "oh by the way, if she did, she could probably never be a mother" is just a little insensitive. At that time, what we were most concerned with was were we ever going to get to hold our baby and take her home. Now, I feel sadness at the possibility that Addy might never be able to experience the joy of carrying a baby in her body, the bond, and being a mother. Will she be angry if she can't? Will she put her own life at risk to have that experience? There is a 20% chance that a woman with CHD will have a child with it as well. This is just one of the things that as a heart mother we have to consider, that other mothers don't.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsd_-GPaY36G7U-aOOSHq8KbEDtvY-X4kQyDUQCn-7UyWoRKig6RsYj6az8JFmLwBvOl41qSLq8rDtbgsW7kvEtAldLHZxmngQw6a2z8iRJ0Sa8lgEz0TxiqVB8bTYHB7FS_IuFJwMYd4/s1600/068.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsd_-GPaY36G7U-aOOSHq8KbEDtvY-X4kQyDUQCn-7UyWoRKig6RsYj6az8JFmLwBvOl41qSLq8rDtbgsW7kvEtAldLHZxmngQw6a2z8iRJ0Sa8lgEz0TxiqVB8bTYHB7FS_IuFJwMYd4/s320/068.JPG" width="320" /></a></div><div style="text-align: center;"></div> The first time she has ever had enough hair to put a bow in it (just barely)!<br />
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<div class="separator" style="clear: both; text-align: center;">Ok, so now that I have hit all he high points and blown off some steam I will keep updated on how her sats look and if we wind up doing the cardiac MRI or sedated echo. Right now both girls have a nice little cold so Addy is a bit of a beast. I'm hoping it doesn't get any worse than it already is but it still worries me. It's hard not to freak out every time she gets sick when you know that a cold could potentially put your child in the hospital, or on the ventilator. More soon to come....enjoy the new pics, I might be prejudiced but I think she </div><div class="separator" style="clear: both; text-align: center;">sure is beautiful!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTctfIO7c3_qoOfsVWJ5e55Lif7Z6QIpu2NwiaTcq18IJ1ByV7je9G7qQdKsyjZJI8Erxv02YbZTzxsbG4RxEdDE20uq660ejoR7BRqPkCh29mtL-7adO4ozMEyFt3luK21t1qsTbsfQL2/s1600/063.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTctfIO7c3_qoOfsVWJ5e55Lif7Z6QIpu2NwiaTcq18IJ1ByV7je9G7qQdKsyjZJI8Erxv02YbZTzxsbG4RxEdDE20uq660ejoR7BRqPkCh29mtL-7adO4ozMEyFt3luK21t1qsTbsfQL2/s320/063.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"> Modeling her new swimming suit for the beach! </div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtF3NFeF11Q5zyV4VvXSv6u2Sh0oW4G5DkwjkGwy5swesu1pjYLjsLX_F8ZNRGR5COgyvkT35uCkahry3HxbFyqHh6A87H9LhVyL4SCyguRsS968i6dzZE9Ul5l_INgChot4KtDeVkkSyv/s1600/066.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtF3NFeF11Q5zyV4VvXSv6u2Sh0oW4G5DkwjkGwy5swesu1pjYLjsLX_F8ZNRGR5COgyvkT35uCkahry3HxbFyqHh6A87H9LhVyL4SCyguRsS968i6dzZE9Ul5l_INgChot4KtDeVkkSyv/s320/066.JPG" width="240" /></a></div><div style="text-align: center;">Taking baby steps, just need a little bit of hand holding still!</div><div style="text-align: center;"><br />
</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-81014866593273288692011-03-06T14:22:00.000-08:002011-03-06T14:22:48.519-08:00How time flies, already 6 months old!It's hard to believe that our baby girl is already 6 months old! Addy is doing wonderful at home and some days it is easy to forget that she has half a heart! She has made many strides in the last month...<br />
After successfully getting rid of our feeding tube over a month ago, we have not put it back in one time! I still have a stash of them just to ward off evil spirits but I'm not counting on having to use them. I think everyone should have a spare NGT around just in case their child is sick and won't eat! She is doing great with her feeds since switching her to Similac Sensitive formula. She had her 4 month shots last week, at 6 months...she weighed 15 lb and 4 oz! She is hanging in the 30-45% percentile for weight and height, which is perfect (anywhere between 10-90% is good). We decided that even though flu season only has about a month or two left we went ahead and tortured her with a flu shot since she is now 6 months. She didn't feel too good for a day or two but it is worth it if it keeps her from getting sick. She might get one more month of RSV prophylaxis but by then hopefully the majority of the winter sicknesses will have passed without her getting them! We don't have to to oxygen saturation checks anymore but my best guess would be that she hangs out somewhere between 80-88% most of the time. <br />
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Most days Addy drinks about 20-24 ounces. I still stress out when she has a day where she doesn't take her "goal". It is hard for me to give up the thinking that she has to take 100% of her volume every single day since for so long she had to get every drop to make her gain weight. Even though we are now feeding on demand, I still don't feel like our feedings are "normal", nor do I know if they will ever be! We are still technically giving her 27cal/oz fortified breast milk but I am starting to wean down the calories to a more normal amount so that she isn't drinking quite such a milk shake all the time. We are finally getting 6 hours of uninterrupted sleep at night! I usually give her 5-6 oz right before bed, then she wakes up about 5 am to eat again, and then goes back to bed until about 9 am....thank god she's not one of those early riser babies! She is a good baby and takes her medicines by mouth like a pro though! Her color remains great, she is nice and pink with rosy cheeks. Sometimes the only time the seriousness of her condition slaps me in the face is when she gets cold or is crying and her hands and feet turn dusky. It's then that the nurse/mommy in me starts running through possible scenarios and the mommy monitor for complications is kicked into high gear for awhile. Always she goes right back to her normal self but it still is a reminder of how fragile she is. <br />
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In other ways, Addy is as normal as can be! We are finally doing a good bit of baby/table foods and I have learned that she MUCH prefers real table food to the bland baby foods. I'm positive that it is not in my imagination that as soon as I sit down to eat she decides to scream, hence she also tries to grab every piece of food I have out of my hand! In the last 2 weeks she has discovered the whine squeal of "I'm not getting what I want", and is taking full advantage of that. She now decides when she is going to eat, and quite loudly voices when she is NOT. She is mobile, rolling over and over, as well as scooting herself around and round in circle in her crib. She eats EVERYTHING that you don't want her to, I'm decided she is part goat because she will gnaw on anything you give her a chance to! She is no longer content to just sit in her car seat when we go places...she needs to see and be involved, and for the most part the center of attention! She can't quite sit up completely by herself unassisted but she is tripoding and I think that will come any day now. She can put her own pacifier in her mouth, although I always know she did it herself when it is in her mouth upside down. All of these normal baby things are such a joy for me to be able to see in my baby that at one point I didn't know if I would ever get to bring home. Every day is a blessing. <br />
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We have gotten a lot of really positive feedback from our announcement for our plans to start a foundationt to help families of children with congenital heart disease. We have started the process to formally start the foundation and are waiting on all of our federal numbers and official paperwork. We will welcome any donations of any kind, but right now it can't be claimed as a tax deduction. We soon as we get everything in we will post more information to start working on our first fundraisers!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5127246076398203564.post-16533820746286420312011-02-09T18:26:00.000-08:002011-02-09T18:26:27.598-08:00Officially Tube FreeSo just a quick update over the last few days...since we changed her formula to Similac Sensitive Addy has become a different child. She has now been without the tube for 6 days, life is finally starting to feel normal. It is so nice not to have to fight with her to take what she will by mouth, check tube placement, bolus the rest of the feed, flush the tube-and then do it all over again in 3 or 4 hours. In between that it was always highly likely that she would pull the tube out, get it caught on something, or the tube end would pop off and one of us would wind up wearing nasty formula. Although I'm still a little paranoid she isnt' going to eat enough,she is eating 22-24 oz a day, I think today we may be tipping the scale at 26oz! For the first time since Addy was born, she is actually crying when she is hungry! You can't believe how much easier it is to wake up at 2 am to feed a baby when she is crying, not just an alarm clock going off! We haven't been concentrating much on working on baby foods this week but I think after next week if she is still doing well we will starting adding more back in once I'm sure she is taking enough fluid. She hasn't thrown up one time but their do seem to be a lot of dribble spit ups since changing formula. This is mostly probably due to the fact that she chugs 4-6 oz in about 10 minutes. She seems unphased by the spit ups though and to me the trade off for the fact that is is taking all PO is worth it. Her next RSV shot and immunizations are next week so we will check her weight then but she looks nice and well fed in the mean time. Being able to feed our baby like a "normal" baby is such a big step in being able to "normalize" our life, it feels as though a giant weight has been lifted.Unknownnoreply@blogger.com0