Sisters with Special Hearts

It’s been over three years since I wrote a blog post, but we thought it was time for me to bust this thing back out to help keep family and friends up-to-date with our upcoming adventure. Not only is Layla’s arrival coming up quickly, but we learned recently it’s going to be an even wilder ride than we expected.

Layla is already trying to be like her big sister as she was recently diagnosed with a congenital heart defect. Doctors were already able to identify the issue at 32 weeks in utero with ultrasound technology. They had been watching her development closely due to Skyler’s history, a single-artery umbilical cord, and the fact that I am so fondly categorized as “advanced maternal age.” This is a much different defect than what Skyler had, and is called Transposition of the Great Arteries with a ventricular septal defect. So while Skyler’s heart had a severe narrowing in her aorta that caused her heart to have to work too hard to pump oxygenated blood back out to her body, Layla’s blood oxygenation pathway is mixed up, so oxygenated blood would not be pumped out to the rest of her body. This only becomes a problem after birth when she uses her lungs to oxygenate her own blood, as right now I’m doing that work for her. Additionally, babies in utero have a couple holes in their heart that allow oxygenated blood to mix, and those holes don’t close up till after birth. Layla has a bonus hole, which is the ventricular septal defect. This extra hole will actually help her in those first few days that she’s on her own breathing.

Interestingly, there are two categories of congenital heart defects, and Skyler’s was the most common condition in one category, and Layla’s is the most common condition in the other category. Our experience with Skyler’s surgical repair and the fact that these are “common” heart repairs gives us much confidence and hope for a positive outcome. Anyone that knows Skyler would never guess what she went through as a baby and how sick she once was. Furthermore, discovering Layla’s condition ahead of time allows us and the medical team to prepare for her, so she can go into surgery ahead of the game, rather than critically ill as Skyler was.

With all that information, we will now be delivering Layla at Children’s Mercy Hospital (downtown KC) so the medical team can stay on top of her health from the get-go and prepare her for surgery. There are still a few variables but if there are no surprises and her diagnosis and expected condition remain as they are now, her surgery would likely take place near the end of her first week of life. While it’s a pretty straight-forward surgery to “switch” things and repair her extra hole, it does require open heart surgery. I stop myself in shock every time I say or think of those words applying to our brand new sweet little baby. But Children’s Mercy is one of the best in the nation to treat this condition and they took great care of Skyler. We are in the right place for this and must trust the process.

This blog post might read a little dry and emotionless – I’m just keeping things factual for the sake of brevity here. This has hit Ronnie and me hard and the breadth and depth of emotions that go with this news is indescribable. Skyler’s ordeal was long enough ago that the trauma had since faded and since we never planned on a second child, we never imagined going through something like this again. It’s shocking and terrifying and familiar all at the same time. I’m sure I will write more about it at some point, but just wanted to get the info out there. Children’s Mercy has terrible cellular reception so we know it might be difficult to keep everyone updated via text and social media, and since we’ll have plenty of time there, I can plug-in and update via this blog much more efficiently. We ask that our friends and family respect our ability to communicate what is going on once things get cray. We’ll have immediate family around to help spread the news but otherwise, we will try to post updates here as often as possible. We are expected to go full term at this point so we still have 7 weeks or so of normalcy as she fattens up for the adventure ahead. Prayers for patience, peace, and of course a healthy outcome are all we can ask right now!