PDA

JuliaAndPete

So my daughter might have avoided NEC but now she's got this large valve murmur that just won't quit. She's already been through one round of endomethicine and it essentially did nothing. She's still only 3 weeks old and we've got a 25% chance that this medicine will work. My husband and I are not hopeful. This could ultimately result in valve surgery. She is still no where near a candidate for surgery.

They've restricted her fluids and clinically she's doing great. The opening is very large and it would take a long time to close on it's own. It might never close on it's own. She could be looking at surgery a couple years from now.

Anyone have experience with this? I know this is a case by case basis. But what I'm curious about is if anyone took a baby home from a NICU with a PDA and experienced day to day problems with your child until that valve closed?

Trying not to freak out. I'm making an attemp to go home for the first time since they were born. It's going to kill me to drive an hour away from my girls. It's going to be awful but everyone keeps telling me I need to do this. There's nothing I can do for my girls in the next 24 hours so there's no harm.

I hate this.

ashleymarie512

I don't have any experience in this area, but wanted to say I'm sorry it's happening It's the worst feeling in the world to feel so helpless. Hang in there...

JuliaAndPete

bromios said:

Of course you hate this, of course it is awful! It's an agonizing situation to be in, however healthy your NICU babes are! Leaving the hospital without them for the first time was one of my lowest points too. For me it did get a little easier with time. My little girl had a large PDA in the NICU that never affected her clinically and was small (but still there) when she had a followup cardiologist appointment a few months after being discharged. We keep meaning to go back and get it checked to make sure that it has closed, but haven't been too worried about it since she continues to be healthy as a horse. Definitely it is good to keep an eye on it, but if your LO is acting appropriately, there's no reason to be really worried. In the event that surgery is needed to close it, my understanding is that it is a very minimally invasive procedure. Here's hoping it closes all by itself, though! 

So your daughter left the NICU with a large PDA that got smaller over time and it doesn't seem to have much of an effect on her? This is reassuring to me but I can't help but be worried. Will she eventually have issues if you don't close the valve? How old is she now? Thanks for sharing!

LucyRicardo3

no experience with the PDA, but I am with you on the hour drive, one way.
It stinks.
Then when I go to the NICU, having to leave my older ones here (especially the girls- wailing if I don't do a great job sneaking out without them seeing/hearing me leave) is rough.

This may sound really strange, but when I have to leave the NICU, I try to think of something non-baby associated, like a Grocery list, or whatever to try and distract myself on something positive so I don't feel so heartbroken every.single.time I leave. I try and go when he's got good numbers and do a very brief "see you in the morning" air kiss and scoot, or I end up sobbing uncontrollably and it's horrific.

 I also try to remind myself that this is "one less day" in the books to be in the NICU and we will eventually be leaving for good.

Hugs!

Courtneyw04

Three of my babies had the PDA surgery. After a few days of recovering they ended up doing so much better and had an easier time in the NICU. We were so glad they had that hole closed. Our one daughter had her surgery a few months after her siblings. Once they finally decided to close her hole she did a 180. She gained weight faster and her oxygen was much more stable. It's a very common procedure and pretty standard.

KatFCo

My daughter had her PDA surgery when she was almost 26 weeks gestational (2 weeks old). It was fairly routine and now she has a small fishhook shaped scar under her arm. It really was the best thing for her and helped her so much. They tried giving her Indocin, but they had to take her off it when she developed NEC.

JuliaAndPete

Oh good Lord, NEC is my worst fear. I hope she recovered!

Thanks everyone for sharing your stories they are all very reassuring. Our doctors, my husband, and I decided not to treat with Indocin. Ellie seems to be clinically unaffected by the valve opening. But it's good to read about other babies having gone through the surgery successfully. Of course it would be terrifying but it's also terrifying for this valve to be open.

We're just going to have to pray for the best. Both girls got their picc lines out today and are eating like champs. We have a long way to go. Thanks for being here for us!

Mrs. Alice

Thinking of you! My Miles had a moderate PDA and was effected by it so they gave him indocin and it closed smaller but not all the way. After that he did great and left the NICU with s small PDA. On his cardiology follow up after the NICU it had closed up but they discovered another congential heart issue called an ASD which never effected him. That eventually closed up on it's on when he was 2 years old. He still has a heart murmur but he was released from cardiology because it's innocent and they aren't worried about it.

KatFCo

Oh good Lord, NEC is my worst fear. I hope she recovered! Thanks everyone for sharing your stories they are all very reassuring. Our doctors, my husband, and I decided not to treat with Indocin. Ellie seems to be clinically unaffected by the valve opening. But it's good to read about other babies having gone through the surgery successfully. Of course it would be terrifying but it's also terrifying for this valve to be open. We're just going to have to pray for the best. Both girls got their picc lines out today and are eating like champs. We have a long way to go. Thanks for being here for us! </blockquote>

See the big girl in the picture? Yes, she did end up developing NEC and had the surgery for it. That was when she was 4 days old, at just over 24 weeks gestational. Overall, she had 3 surgeries before her due date. She's what they called a "textbook" preemie. She had every typical preemie issue except brain bleeds. Today the only sign of her ever being early is her scars and her asthma (because of BPD, but that could also be something she inherited from me).

Hang in there! It's a long road, but there is a light at the end of the tunnel. Even if you can't see it yet, I promise, it's there.

JuliaAndPete

I listened to Eleanor's (Ellie) heart today for the first time. It seemed pretty loud. From what I understand that's a good thing. It means it's getting smaller. I hope it'll take care of itself. I still hate this.

[Deleted User]

My son has a VSD and we have a follow up with cardiology in a few weeks for his 3 months check up. He's doing great but nurses/doctors told me they hear the murmur. We are also hoping it will close on its own and without intervention. I think in our cases it's a good sign that docs didnt operate right away. It means there is a chance it will close on its own. Good luck and hope the PDA closes on its own without intervention.

JuliaAndPete

My daughter has a PDA & VSD. Sigh oi. She seems so good still though. The only thing we see is that her blood pressure numbers have a big gap. I dunno.

JuliaAndPete

Best wishes to everyone's LO's. What a crazy ride this is!

JuliaAndPete

@maitaibeth give them time, they are amazing little humans who will surprise you every so often. These preemies really run the show.