Yesterday Sophia was having a tough time maintaining her oxygen levels. I left out a few other details. The rest of the story is that Sophia has some heart issues. A few days ago, they heard a heart murmur during one of her routine checkups. The pediatric cardiologist did an echocardiogram (sonogram of the heart) and discovered that Sophia had a ventricular septal defect (VSD). In short, they found a gap in the muscles in the lower chambers of her heart that was letting blood “leak” from one part of her heart to another. (That’s not good.)
It’s not uncommon for preemies to have VSDs and it’s fairly typical to grow out of them. So, they planned another echo for today to see how things were progressing. The good news is Sophia’s VSD has closed – so there’s no longer a hole in the lower chambers of her heart. They found a new issue though.
Back when the kids were first born, they both had an issue called patent ductus arteriosis (PDA). The ductus arteriosus is a bypass blood vessel that allows the baby’s blood to skip over the lungs when they’re in the womb. Since none of us breathe air (that’s where the oxygen is) until we’re out in the real world, the ductus arteriosus allows the umbilical cord (mommy) to provide oxygen to a baby’s bloodstream. It’s supposed to close right after birth. It’s very common for a preemie’s ductus arteriosus to not close on its own. When it doesn’t close, it’s called PDA. Kids with PDA have a harder time getting oxygen into their blood since a big portion of their blood bypasses those oxygen-rich lungs. If PDA goes uncorrected, it can lead to all kinds of badness, including heart failure. In other words, PDA is bad.
Both twins had PDA when they were born. They each got 3 days of medicine (indomethacin). In both kids, their ductus arteriosus closed, so the PDA issues were gone. Win, right? Well, after Sophia’s recent VSD happened apparently her PDA is back (acronym city, I know). So, even though the hole on the inside of her heart is closed, there’s effectively a hole on the outside of her heart that’s keeping her from getting oxygen to her blood.
She’s really, really cute though…
Because of Sophia’s PDA, the left side of her heart has swollen and is larger than the right side. The doctors laid out the possible treatments for us today. Sophia could go through surgery to correct the problem. Surgery has all kinds of scary possible complications for a kid that was just two cells 34 weeks ago (well, really about 32, but who’s counting). She could also get another round of the medicine. There are possible complications with that too (GI tract ruptures & others). The biggest gotcha with the medicine is that it’s not as effective in babies as “old” as Sophia. Given her state now, it’s extremely unlikely that the PDA will heal on its own.
Tanya & I really couldn’t stand the thought of Sophia going in for heart surgery (the PDA isn’t really IN the heart, but close enough). The cardiologist & neonatologist (NICU doctor) said that her condition isn’t bad enough today that she needs to get rushed into surgery. So, after weighing all the scary bad things about each option, we decided to give another round of medicine a try. The doctor estimated a 50/50 chance that the medicine will help the PDA.
They’ll be watching Sophia like a hawk over the next couple days. She has to stop her feedings and go back to nutrients through her PICC line. If her conditions worsens, she may not be able to wait to see if the medicine helps. It’s possible that the medicine will help some, but not entirely fix the PDA. It’s also possible that the medicine won’t help at all (I’m still not sure how her “age” can decrease the effectiveness of the medicine, but apparently there’s some doctor magic that only works on early preemies).
PDA isn’t something that we can just blow off & let be. It has to get fixed. So, here’s the plan. Medicine for the next couple days. Thursday will be an other echo. We’ll see Thursday if Sophia needs surgery or not. She could be in surgery on Friday or Saturday. It could always be worse, but this has us pretty much shaking in our boots.
As part of her monitoring, Sophia has to get blood drawn quite a lot. This is her heel during a blood draw…
On a lighter side, Cameron says: PSSST! REMEMBER ME TOO!
Cameron’s doing extremely well. His health is an amazing blessing. He’s now in clothes! They have him swaddled and they’re weening him off of his heated playpen. I held Cameron today and Tanya held Sophia.
In writing this, I took a few minutes to look back at some of my earlier posts. Both of the twins are now approaching 4 lbs. If you compare them to some photos shortly after their births, it’s amazing the difference that just (almost) 3 weeks has made.
Normally, I scrub these posts for editing errors. I’m just not in the mood tonight. It’s time to go be with Tanya.
Thoughts, prayers, love, karma, good tidings…whatever you have, Sophia can use them. Thanks.