I wanted to document this journey we’re on dealing with Adara’s heart defect.
I’m sitting here trying to figure out why. Why do I want to document this on my blog? I guess for a few reasons.
- It is one way to keep people up to date about what is going on. There are so many wonderful people who care and are praying for her and this is one way I can relay information and updates.
- Maybe it can help someone else someday who may have to walk this road. Or who are walking it at this time. We can deal with all this together.
- It helps me process things to write it out.
- I am so sleep deprived I forget things. This way, I can have a record of this to look back on when I need to….because I’m very forgetful since I am SO tired….did I mention that already? I can’t remember….
We found out when I was about 24 weeks pregnant that Adara has a hole in her heart called a VSD. Because of the size and placement of the hole and the fact that the aorta grew slightly askew she also has mild Tetrology of Fallot. These heart defects require open heart surgery for my sweet little baby girl in the next few months.
We knew this before she was born. While it was devastating news, it was a good thing to know early so we can be on top of it.
But now that she is here, she looks healthy. If you heard her LOUD, STRONG cry, you would never believe that anything was wrong with her at all! She seems like a normal newborn. I want her to be a normal newborn!
But she’s not totally normal. The hole in her heart has already caused some problems.
We saw the pediatric cardiologist on February 29 (not a very exciting way to spend Leap Day!). At three weeks old she was already showing heart failure symptoms. Her heart was slightly enlarged and working extra hard pumping extra blood. Her liver was slightly enlarged due to the extra blood. And her lungs had some fluid in them. The cardiologist said that all this is to be expected at 3 weeks of age and nothing is “out of the ordinary” for her condition. So, we had to start her on two heart medications: Lasix and Digoxin.
Also, since her heart and lungs are working extra hard, it’s like her little body is exercising so she’s been burning too many calories. I have been taking her to the pediatrician every week to get her weight checked and getting so discouraged each week when she’d only gain one ounce. At 4 weeks old she was still not back up to her birth weight. Usually babies should be back to their birth weight by 2 weeks old. So I had to get aggressive with her feeding. I have to wake her every 2 hours to nurse her and supplement with breast milk or formula. It’s pretty exhausting. But I am VERY pleased to say that today we went in to get her weighed again and she gained 8 ounces in 3 days!!! She is now 2 ounces OVER her birth weight at 4.5 weeks old!!
It’s been hard though. I feel like I am just maintaining this little life. I watch the clock to feed her and make sure to remember to give her her medicine (did I mention the extreme exhaustion has clouded my memory these days???). I’m just working to keep her alive and healthy. I don’t feel like I’m getting to enjoy her yet.
I look at her chest when I get her dressed or give her a bath and just cry. That perfect little chest is very soon going to have a huge scar on it. It breaks my heart in a million pieces. I wish I could give her mine so she wouldn’t have to do this! I wish I could go through the surgery!
But I can’t. All I can do right now is take care of her and make sure she is as healthy as can be and gets what she needs as much as I am able.
We are SO thankful for the many, many people who are praying for this sweet little girl and for our family! She is very loved!
We see the cardiologist again this Wednesday. I will update again after that appointment and see how things have progressed these last two weeks.
Sorry this post isn’t more eloquent….did I mention I haven’t gotten much sleep this past month?? Lack of quality sleep can do funny things to your brain!