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vsd babies recovery after surgery anyone?

(10 Posts)
Joannie123 Tue 14-Jun-16 17:12:39

Hi, I have a 12 weeks old baby who has a few holes in the heart which is affecting him in terms of feeding and breathing. He is not putting on weight well and we might end up with tube feeding soon. He has a procedure/surgery coming up in a month to close the hole. Feeding is just very difficult at the moment and seeing him not put on weight really stressing me out. Has anyone had similar experience and how was the recovery period and did baby start feeding better and start putting on weight and reaching their milestone ??

scaryteacher Tue 14-Jun-16 23:14:12

My VSD baby is now 20 and has just finished his second year at uni!

We had diuretics to drain his lungs for six months before his catheter test, and once his lungs were clear and the hole had started to close itself more, he began to gain weight. He really caught up weight wise and filled out at about 11/12 when puberty hit.

He hit all his developmental milestones early with walking and talking.

I used to prop the cot up at the head to help with breathing. The docs dismissed me as an over anxious mother when ds fell off the bottom of the weight charts, and his rather large VSD was discovered when he was 6 months old, after I had had a melt down at the GPs.

leopardspice Tue 14-Jun-16 23:16:44

Watching with interest as my dd has...along with other cardac abnormalities... a large VSD!
She has has catheter surgery for her pulmonary artery so far at Birmingham. Not sure when vsd surgery will be as she is doing well... all the best op flowers

Joannie123 Wed 15-Jun-16 09:14:54

Thank you! That's amazing! So scaryteacher did the hole just closed by itself then? My baby is on some diuretics as well been on it for more than a month. Everyone seen to suggest that I'll have a different baby once surgery is done in terms of feeding but I've struggled with feeding since day one and almost think it's not going to change!

Leopard spice, thank you! I'll let u know how my baby gets on after surgery. How old is your dd? Is she putting on weight ok?

Also wondering if anyone has experience with ng tube feeding ?

RNW Wed 15-Jun-16 17:39:35

Hi Joannie123, I've PMed you as my son had similar in 2012, and also was fed with an NG tube for a while.

theladychablis Wed 15-Jun-16 19:32:48

I had a similar complaint corrected at 8 months old. My mother reports I was a different baby the morning after the op. Certainly a different colour ( I have seen the before and after pics). But also able to BF properly ( before I'd just fall asleep after a few min), cry ( as opposed to mewling like a kitten) and active (as opposed to being quite passive and uninterested in the world). I asked her about milestones and she said it was all fairly quick.

foxyfemke Thu 23-Jun-16 17:43:53

My son had a large VSD fixed at 6 weeks just over a year ago. He was tube-fed from birth as he had some other, unrelated, issues and had a very low birth weight. He was also on fluid restriction.

He recovered pretty quickly from the surgery. He came home a week after operation day. He was able to drink enough from the bottle shortly after he came home and the tube came out 2 weeks after he was discharged.

As for hitting milestones, do expect a delay. As my son was tube fed from the start, and had to learn to drink properly at 2 months old, and we had a pre-speech therapist help us with this. In terms of eating he's about 2-2 1/2 months behind, although we started weaning around 6 months, he wasn't ready for.

His gross motorskills are about 3 months behind, as they reckon his body was in survival mode the first few months. He didn't start crawling until 13 months old and we have a physio right now to help him as mentally he's where he should be and this leads to much frustration on his side.

I felt his recovery was pretty quick, he was a different baby, straight after the op. His heart rate had dropped, his blood sats were fine, his respiratory rate was much better. He started looking much healthier and getting a normal colour after a few days, it was a massive change.

As for tube feeding, for us it was amazing. My son couldn't drink more than 10mls, maybe 20 in one go. He was also on a fluid restriction and on diuretics until he was 3 months old. If you breastfeed, they can give expressed milk through the tube. I was never able to breastfeed due to the fluid restriction, but I expressed for about 2 months until it became too much to cope with. We also had special formula for a while and they had put additives in the breastmilk to help him grow.

Dealing with the tube feeding at home can be a bit tricky, but we were shown exactly how it all works and it was fine in the end.

Fixing a VSD is a straightforward operation, but nonetheless it really hits you hard. My son is almost 15 months now, happy and healthy. The only reminder of the whole ordeal is the massive scar on his chest, but it's really faint now.

Good luck for the coming period. Nothing prepares you for this. Feel to to send me a message if you want to chat.

Dairybanrion Thu 23-Jun-16 17:50:31

Mine has a lot fixed. Vsds and wonky valves. Complex 'stuff'. confusedAt 18 months.
Difference was like difference between night and day.
Your baby will be in the hands of experts. The very very best of care.
I regard our cardiac surgeons as the greatest man on earth. smile

scaryteacher Thu 23-Jun-16 20:28:49

joannie, ds was tube fed for 1 days after he was born. We went home, and after he fell off the bottom of the weight charts, etc, we finally got his VSD diagnosed at 6 months. We then had six months of diuretics to drain his lungs down, and at about 15 months he had the catheter test.

The hole had started to grow over (which was why he hadn't gained weight - all his energy was going to closing the hole), and now he just has two yearly checks to see that it hasn't got bigger. It has almost closed over completely, and he is doing fine.

scaryteacher Thu 23-Jun-16 20:29:15

Sorry, that should be 10 days after he was born!

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