Dealing with son having open heart surgery

Leona - posted on 01/05/2010

Jimmy got RSV two weeks ago and they had to push his surgery back. It isn't until February 17th now! I don't feel like I can live that long..... I just want to thank all of you for your comments and support. Sorry it took me so long to write back, we don't have the internet at home anymore.

Alaina - posted on 12/26/2009

Many thoughts and prayers for your little one, you and your family!

Olga - posted on 12/23/2009

I know you asked to hear from folks with a similar experience. I have not. I just want to send you some love and strength from my random corner of the work. Wishing you and you loved one the best. -O.

Jennifer - posted on 12/23/2009

My husband went through it at 2 mths of age and is old (lol) and healthy. Although he did have complications after surgery, he is fine now. And your son will be fine too. Good luck and the best advice is to have lots of support and ask lots of questions to the doctor's to make sure that you don't have any doubt and you feel somewhat comfortable when the day comes. Remember everything will be fine.

Katherine - posted on 12/22/2009

That's really scary for a mom to have to go through. I would school myself on the surgery and condition, it always makes me feel better to be more informed. Hope everything goes well.

Kourtney - posted on 12/22/2009

My Heidi is almost nine months old now and had open heart surgery for a complete AV Canal (AVSD) when she was eleven weeks old. We found out about her heart problem when I was about 20 weeks pregnant, but it still didn't prepare us for her actually having the problem. Before the surgery, she wasn't eating or gaining much weight, she wasn't breathing very well, and she was always exhausted. After the surgery, the doctors kept her under anesthesia and heavy painkillers (morphine) for the first few days. It was scary to see my baby hooked up to all those tubes and wires, but my husband and I got through it. On the fifth day after surgery, Heidi woke up and was already a brand new baby. She was eating, smiling, and actually staying awake for more than 10 minutes at a clip. Now, 6 months later, she's doing great, babbling away and rolling where she needs to go, lol. Like I said, it was probably the scariest thing I've ever been through, but we all made it, and you will, too. Please feel free to ask me absolutely anything, and good luck and God bless to your little boy and the rest of your family!

Renae - posted on 12/22/2009

I have the same thing. But mine is the size of a pin hole so I did not have surgery. It was supposed to close up by the time I was 12-16 but it never did, I still have it and every time a doctor listens to my chest I have to remember to warn them they will hear a murmer. It has never caused me any problems whatsoever. I am just not supposed to let my heartrate go over 180 so I have to keep an eye on it at the gym. So your baby definately needs surgery on this one? It wont close up on its own? He cant just live with it like me (and I know 2 other people my age - 30 - who have lived fine with it)? I guess you have confirmed that the surgery is necessary.



I feel for you. My baby had double surgery at 10 weeks old to repair 2 hernias that he was born with. This was a very routine surgery, a walk in the park to the surgeon. So nothing like what your poor baby is about to have. But still I was so worried while he was in there. I tried to occupy myself with a puzzle book but it was hopeless. I dont think I can say anything to prepare you for this. Have someone with you who can take note of everything the doctors say about caring for your baby post-surgery in case you are so overwhelmed it doesn't sink in. And definately have a support person there with you the whole time he is in surgery and for as long as possible afterwards. I made the mistake of letting my husband go home before our baby woke up and fed. See he woke up from anesthetic but he was crying really hard and although he hadn't fed for 5 hours (3 hours fasting then 2 hours surgery and in recovery) he would not latch on (breastfed), so they thought he was in pain and gave him some strong drugs that knocked him out and he went back to sleep. While he was asleep they said once he woke up he should be ok and would feed. So I said my husband could go home since only one of us could stay for the night and he would have to go in a couple of hours anyway. But when baby woke up he still screamed and screamed for hours and the doctor didn't think it was necessary to give him anything and I didn't know what to do and I was in tears because my baby was so upset. Every now and then he would pass out from exhaustion for 20 minutes or so and then wake and scream again. And whenever the doctor came was while he was asleep! This went on for hours. When he eventually fed it had been 10 hours. I think if my husband had stayed he would have taken control of the situation and made the doctor do something, I am normally very assertive but I was in shock and too emotional. Eventually a friend of mine who happens to be a senior nurse at the hospital started her shift and came to see us and she took control of the situation, called the doctor back and insisted he give our baby morphine (which is apparently a lot safer than it sounds). This calmed him right down so he could feed and after that he was fine. So have someone with you who can assist and talk to the doctor if you need them to. We have been in hospital a couple of times and doctors dont listen to over-reacting (in their opinion) and emotional mothers.



One other thing is that every time we had to move him to burp or change a nappy or anything it would hurt him. So we ended up carrying him around on a large firm-ish pillow and hanging his bottom off the edge to clean him rather than bending his legs up. He stayed on the pillow all the time, I sponge bathed him on there and put the whole pillow with him on it into his bassinet (it happened to fit perfectly!) so we didn't have to lift him to put him to bed. This really cut down the amount of pain in being moved around.



I hope I haven't scared you with my post-op story, hopefully its something to learn from rather than be scared by (hopefully!). I'm sure it wont be like that for you. Best of luck and let me know how it goes. I'm sure everything will be fine.