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.
Tanya and Brian, we will be praying for Sophia. We will pray that God will heal your beautiful baby girl and for Cameron’s continued good health.
Tanya & Bryan… thinking & praying for you & your family. Sophia is a fighter & she will get through this!!!
Praying everyday for all of you! Extra special ones for Sophia!!!
Thanks for the update. Y’all are in my daily prayers. I really hope the medicine does its magic for Sophia.
Continuing to pray for you all, especially Sophia. Hang in there Mommy and Daddy!
Praying for you guys regularly–that the Lord who knit Sophia together in Tanya’s womb will help her over this “bump in the road.” Love to you all!
Oh Sophia, you can do it baby girl! Your Mommy and Daddy (and lots and lots of other family and friends) love you so much. Feel all that love sweet girl and close up that PDA. Thinking of you and Cameron and sending so much love.
~Aunt Kristin
On Monday after the holiday I noticed, too, how healthy and grown up they look in the weekend’s posts. They’ve changed so much. We’ll be praying about that PDA…and hoping this is the only kind of “PDA” you’ll ever have to talk to her about! Get used to the jokes, y’all, you’re parents of a beautiful girl….. 🙂
Bryan and Tanya,
My thoughts and prayers are with you and sweet Sophia. Not sure if you recall, but Laura and I have been through this together with Morgan when she was a newborn. She’s now a feisty and sassy little 8 year old. The little girls are fighters, and I have faith Sophia will become a stong healthy little girl just like Morgan. If you have any questions and I or Laura can be of any support please let us know. Love the Berubes
Wish I could be there to hold your hand, look you in the eyes, and tell you it’s going to be all right (even though you probably wouldn’t believe me). As you know, we’ve been there. Gabriel had a VSD and PDA at birth, along with a scary laundry list of “issues” that came courtesy of VACTERL syndrome. His first surgery was only 2 hours after his birth, and it was a scary roller coaster ride from there. But, you also saw how healthy he was when you first met him at age 2 (when I was pregnant, I was told that he may not make it to his first birthday). This too shall pass. Add our prayers to the list, and don’t forget to take care of yourselves (for their sakes)!
Marin’s mom here. Please know that you and your family (esp. those sweet, sweet babies!) are being prayed for here in Canada too.
Continuing to pray for you all and most especially te babies. I will add Sophia and the PDA to the prayer list at church as well. Thank you so much for the updates.
Baby’s are tough and Dr.’s and technology are amazing. My thoughts and prayers are with you as I know making these decisions isn’t easy. Parenthood is not for the weak — you are both doing great and those babies are beautiful! Love and Hugs!
Saying lots of extra prayer for all of you! Hang in there!!!
Bryan and Tanya, we’ll pray for Sophia and you. We’ve experienced newborn heart issues and know the kind of strain you guys are feeling.
Sophia must have been born to be an instructor of some sort. For a long, long time I have ALWAYS wondered how in the world a baby gets oxygen in utero and then as soon as they surface they can breath on their own…. Thanks to her, I now know. Now it’s time for her to be better. She’s got a brother to keep in check!
My own heart just skipped a beat reading your tweet from yesterday about Sophia’s issues. Reall keeping you, Tanya and the babies in my prayers!