On August 17th we went to our doctor's office for what should have been a routine check up and anatomy scan at 21 weeks. Adam decided to tag along because it was my birthday, plus he hadn't met our new OB and figured it would be nice to say hello before they met in the delivery room. During the ultrasound the technician kept saying she couldn't get a good picture of our baby's heart - that she wasn't in the right position to get all the images she needed. We had a high risk and complicated pregnancy with the twins and have become pros at sitting through ultrasounds, so we didn't think much of it and figured our girl was a wiggle worm like her big sister.
While we waited for the doctor to come in we turned on some music for the twins, had a little dance party, and never imagined we had anything to worry about. When our OB came in (and it's hard to remember) I think her exact words were "it looks like there is something wrong with your baby's heart." Oddly enough, even then I wasn't worried. Our son, Connor, has a small heart murmur and another minor defect that hasn't and likely will not effect him and I just assumed it was something along those lines. We were scheduled for a level 2 ultrasound that afternoon and at that point my biggest concern was getting to chick-fil-a for lunch before I had to get back!
Fast forward a few hours I had my second ultrasound of the day and the reality of the situation started to sink in. I went to this one alone (big mistake) and as I watched the technician check every box "abnormal" regarding our child's heart, my own heart sank. Soon, a doctor joined us to see for herself and began to explain that our baby has a very serious heart condition called Hypoplastic Left Heart Syndrome. I'm sure everything she was saying made sense, but I wasn't processing a single thing and knew I just wanted OUT of that office. She eventually drew me a picture on a post-it to take home, made me promise not to Google any non-medical websites and told me we would need to schedule a fetal echo as well as a series of appointments at Children's Hospital with the Fetal Care Center. I wanted to throw up.
Since then it really has been a blur. We've cried a lot (well, I've cried a lot). We've researched, gotten recommendations, received prayers upon prayers, and started making plans. We've met with the doctors at Children's Hospital that confirmed our diagnosis: Hypoplastic Left Heart Syndrome with mitral stenosis and aortic atresia. Essentially, our daughter's heart didn't and won't develop properly and she will need a series of open heart surgeries to "reconfigure" her heart. Without surgery she will die - there is no cure. She will live with one working heart ventricle, not two. She will have a 70% chance of making it to her first birthday and a lifelong battle ahead of her.
With a diagnosis like this there are SO many unknowns. Until she is born and has her first surgery (likely around her 4th day on earth) we won't begin to get an idea of how she will respond and what her body will be able to handle. But here is what we DO know: We know she is loved and that we will do everything in our power to give her the best care and quality of life imaginable. We know she is a miracle baby - after struggling to conceive and going through 2 rounds of IVF to get our twins, she came unexpected and unplanned, but completely loved! And we know she is a gift from God who has preordained a plan for this special girl beyond what we could have ever imagined. She is already teaching us how to love hard, pray continuously, and cling to the Lord when we want to crumble.
We are obviously so sad knowing our child will suffer, struggle, and always cope with a medical issue that will leave her with half a working heart. BUT, we are determined to rejoice in Him always, praise His name, honor His plan for our family, and look to Him as we navigate through what lies ahead.
We've named our daughter Stella Ann Stacy and decided to share her name so you can keep her specifically in your prayers. Thank you, in advance, for your support and love for our family and especially, our dear Stella.
xoxo,
Adam, Kate, Connor and Ellie
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