Hi Ladies,
This is my first time posting on this board, but I thought this would be the place to come. I am just about 32 weeks and have been fighting off PTL for the past week. Nothing seems to be working very well, so everyone's preparing for an early delivery.
Lo will need heart surgery for an interrupted aortic arch, a large VSD and a small aortic valve. I know this isn't very common, but has anyone been through this or something similar...or any heart surgery? Just wondering how preemies do with this kind of major surgery.
TIA
Re: Preemies with heart surgery?
First, welcome to our board. Its a great group of supportive women. Check out the blog we've put together (link in siggy).
I don't have any personal experience with heart surgery but our two best friends from the NICU both had babies with heart issues. One had surgery to close her PDA and the other had several surgeries including open heart surgery. It was really scary for both families but both babies were so much better after their procedures were done. Their recovery, growth, breathing, etc all developed much more quickly. So I guess I want to say that as scary as the surgeries were, they had great outcomes and both babies just celebrated their first birthdays as healthy active little ones!
Our precious girl, born at 27 weeks.
My twins were born at 34 weeks and one of them had open heart surgery at 10 weeks old. He was in the NICU for 2 weeks as a feeder adn grower and was home for 8 weeks. It is a little different situation because my son's surgery was not very close to his birth, but he did great with the surgery.
The other thing I can share is that I work in a PICU that does post-op for all heart surgery patients (preemies to adults). Heart surgery on a baby or anybody can be rough. There are a lot of possible complications that some people get and other people don't have any complications. i think the biggest deal with the fact that your baby is a preemie will be gaining weight before they decide that it is time for surgery. They may try feeding with an NG to gain weight or they may give some fat (called lipids) in the IV. Also, depending on how close to being born he is intubated (a breathing tube is put in) and for how long he is intubated before and after the surgery, feeding may be a hurdle you guys will have to climb. It takes time to learn how to suck and swallow and how ever long the breathing tube is in will be time that he will not be working on feeding. Otherwise, heart surgery is a day by day recovery. Just like a NICU stay, it has uphills and downhills.
Have you met the cardiologist yet? How about the surgeons? I would ask your questions now so you are all prepared. Knowledge is power! Is the surgery going to happen close to birth or wait a little? Is the surgery going to take place in the same hospital that you are delivering?
I hope this helps. Let me know if you ahve any other questions.
Thanks, ladies!
To answer PP's questions, I have been in close contact with the surgical, cardiac and nicu teams. They've been around to check on my progress in the hospital and get a plan as well as doing a fetal echo to check on his progress (and yes, it'll be performed in the same hospital that I deliver/recover in. I moved last week just to be closer to the hospital once I'm released.) The surgeons seem almost unworried about it as lo is measuring about 4lbs (estimated) and they've successfully performed similar surgeries on babies as small as 1.5 lbs and 27 weeks.They plan on waiting for him to stabilize after birth, but would probably do the surgery around 3-4 days old.
I'm at Lucille Packard Children's Hospital at Stanford, so I trust that they're the best, but I don't think there's any such thing as feeling at ease about 1. having a premature baby, and 2. handing that fragile baby over to anyone to perform open heart surgery within days of their birth.