Our Congenital Heart Warrior!

Our Congenital Heart Warrior!
Rockin her Red!

Thursday, September 29, 2011

This 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.

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?

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.

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.

Thursday, September 15, 2011

We 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!

Thursday, September 8, 2011

New Cath Plan

We 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.

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.

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.

She wasn't too sure about it to begin with, but once I put her in my lap, it was on like Donkey Kong!

Beloved Bearie, her security object, he stinks to high heaven, but she loves him! Even in sleep, he is nearby!

Those big blue eyes, who could say no to her! She really enjoyed her cake for her 1st Birthday!
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.