A Friend Remembered, Every Day A Blessing

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever" Psalm 73:26

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.

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. 

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. 

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. 

Bubbles never cease to be amazing to a 3 year old!

Working hard at those pulmonary skills!

Peggy says "is this kid ever gonna blow a bubble?"

Love the look of joy on her face!

How wonderful to see her be able to run without huffing & puffing!

"Caulking the Rocks" as Addy says 

Bound and determined to catch a chicken....they are just toying with her though, she doesn't stand a chance!

Our best girl, Cassie, loves her some attention- what a camera hog!

I think they are sharing secrets!

Addy loves her animals, nothing like a little love from Cassie!

Last but not least, if you've never seen a bunch of chickens haulin' drumsticks to the sound of corn in a can.......

......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!

Giving 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!

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.

Grandma didn't do too bad on decorating the cake, poor ole Doc is a little sideways!

Happy Birthday to Addy, hoping all her birthday wishes come true!

It took a little help from behind but we finally got those candles blown out!

This girl is not going to skip on the cake, it's the only reason she showed up!

 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.

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.

- 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,
- 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.
- 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
- 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.
- 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.
- 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!)

We pulled out the walker for her baby cousin, but Addy thought it made a perfect car for her!

Her first big girl bike, Lord help us all!

Addy playing Doc with her brand new doctor outfit and friend!

Miley looks surprisingly calm about getting a shot from Addy!

 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.

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. 

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.

My fear was that we would lose Addy too soon for our earthly standards. This changed when the revelations came along that God's will be done- and it already is. In fact, God's work was evident long before Addy was ever born, or even conceived.
- 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.
- 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
- 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. 
- 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.

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.

One piece of cake wasn't enough, sneaking some more after everyone left!

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.

 Afraid to love, Something that could break
Could I move on, If you were torn away?
And I'm so close to what I can't control, I can't give you half my heart
And pray He makes you whole

(Chorus)
You're gonna have all of me, You're gonna have all of me
'Cause you're worth every falling tear, You're worth facing any fear
You're gonna know all my love, Even if it's not enough
Enough to mend our broken hearts, But giving you all of me is where I'll start

I won't let sadness steal you from my arms, I won't let pain keep you from my heart
I'll trade the fear of all that I could lose, For every moment I share with you

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

Those gut feelings, emotions, and back to school!

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.

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 "insert instructions for adjustment, 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.

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.

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.
 
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!

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.

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.

 'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

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.

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!

Oh to read her mind right now.

Shopping for her party supplies, so much fun. Yes, we bought these!

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.

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!

  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.

Daddy walking her to the car on the first day of school!

All set with her backpack and her Stinky Pinky!

So excited in the car on the way to school!

Getting her painting apron on with her teacher Miss Carrie, forgetting I'm even still there!

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.

After her year of homeschooling, Maci is so excited about her first day back in the classroom!

Everyone's first day, ahh, time to relax!

Summer 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!

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!

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!

Taking important phone calls with Nurse Felicia

Checking Child Life Caroline's Ears for Kitties!

Time for Nurse Ashley's IV and blood draw!

Checking her chart for lab results!

Oh no, we better call the doctor!

 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!








 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!
 

 

  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!

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!
 

 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!

New 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 ;)

Our sweet girls, best buds!

They really need better baby glasses selections!

She still manages for them to slide down her nose, lol

 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!

 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.