Awaiting surgery

Yes, my son had OHS at 4 months old. It's a very difficult thing to go through, but when it's over you'll have the biggest feeling of relief wash over you. For us, we spent a week in recovery. Of course every case is different, but I pray your sweet baby has a successful surgery and smooth recovery. Ask about beads of courage while you're there. It helped me get through the days and it'll be nice to show your little one when they are older how strong they were

Ok thank you I’ll be sure to ask

How long were you in the hospital total

Also when you got home with him was the recovery hard at home? I know there is a special way we have to pick up after surgery

I have no experience in this department… but I just wanted to send so much love and strength to you all, especially baby. My heart aches for you, but your little boy sounds like an absolute warrior! Stay strong. ❤️

Thank you I greatly appreciate the kind words ❤️

@Jennie we were in the hospital for a week total. That was the best case scenario timeline that the Dr's gave us, but I could tell they weren't expecting that. Recovery at home was pretty rough for the 1st week or two. I accidently picked him up from under the arms one time and felt extremely guilty cause he started crying immediately. I only made that mistake once. They tell you not to pick up from under the arms because it basically stretches the skin around the incision and hurts, but it didn't affect healing at all. He seemed to be having nightmares for the first week or so, but thankfully that stopped. Something I recommend everyone going through this is to bring infant tylenol that you know your baby does well with. For us, he does really well with dye free cherry. The hospital unfortunately didn't have any. They only had grape and he threw it up so they had to give it to him up his bum and he hated it.

I was really hoping that we were going to avoid the surgery but he has 3 holes in his heart and they don’t want to take him off of respiratory support that’s the main reason why he’s still in the hospital and he had a respiratory infection when we got there so they want to make sure that’s out of his system before getting him into surgery

An I definitely have anxiety on it wish I could just get the surgery for him

I just want to send some love - we have had our surgery cancelled twice, and then a third time today - been battling respiratory infections ever since they cancelled the first operation so I know your pain right now. It’s making my soul tired and every day seems like a battle but we are strong and so are they - I hope you’re ok ❤️

Yes that can be very disappointing I think we caught his respiratory infection right on time with the catheter appointment so he’s been at the hospital ever since and that’s also another reason they don’t want him going home because he’s on the cpap machine to help his breathing and control his hypertension but then weening off of that make more fluid on his chest it’s been so back and forth with his health and I know once we have the surgery all these issues will go away I’ll keep your baby in my prayers as well