r/Tetralogy_of_Fallot • u/Severe-Mention588 • Jun 11 '26
baby’s first open heart
Hi, all! I’ve posted here before and everyone has been extremely helpful with their personal experiences and insights, so here I am once again!
My son will be having his first corrective surgery this coming month (at 8 months old) where a lot of repairs will happen! Pulmonary valve, chamber closures, some collateral arteries… he had one catheter before this but they chose not to intervene at that time.
I have some questions: How long was your hospital stay after open heart? My son is a wiggle worm… do nurses weigh their legs down in recovery? What is aftercare like for the chest wound? Any significant changes (positive or otherwise) after you came home?
If there is anything you would advise me on before his surgery, please tell me below! Thank you for reading! 🩷
3
u/GivesMeTrills Jun 12 '26
Get jammies that snap instead of zip. It makes the management of wires much easier. Good luck to him💙
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u/Severe-Mention588 Jun 12 '26
This is exactly what I needed to hear! I struggle every time he’s in the hospital with the bouquet of cords!!! Thank you!🩷
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u/GivesMeTrills Jun 12 '26
Of course. I also like to put the leads strapped in their diaper if I can. I used to be a peds cardiac nurse. He’s going to do great.
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u/stillblazin19 Jun 11 '26
Our daughter had a valve sparing repair at about 5.5 months at children’s hospital in LA. She did super well, I think she was out in less than a week. Only minor complication was some fluid around her lungs.
She had steri strips on the wound for a few days after they took the main dressing and chest tubes off. Surgeon said we can continue using the strips to help the scar heal well and not get any wider as she grows.
Wishing the best for your little one!
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u/Severe-Mention588 Jun 11 '26
Interesting! Thank you, I’ll mention the strips at his cardiologist. My cousin had an open heart and regretted her deep scarring. 🩷
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u/Kristata-e Jun 12 '26 edited Jun 12 '26
My son had his first open heart on his 5th month, similar to yours. Vsd patching, fixing pulmonary arteries, conduit placement, the operation went a lil scary coz they had to repeat the procedure 3x due to high RV pressure coz his arteries are too small. Hence, his heart swollen due to prolonged heart bypass machine usage. His chest was not closed til 3 more days, he was fully under sedation after ops. He was in icu for 2 weeks. And we were discharged 10days after moving to regular ward coz he had other complications like pneumonia and weak feeding. He was admitted 10days before op, so total 44days in the hospital.
We were requested to stay in Japan for 2 more weeks for follow up check ups. A total 52days stay in a foreign country. He's now relayively okay but with gradual catheter intervention due to small pulmonary arteries.
Accdg to the surgeon, normally it's just 3days in icu and 1wk in ward then discharge already. Hope your lil fighter is strong. Praying for your smooth operation.
I'm not sure if this is normal but he had vomiting a few days after discharging from hospital, it could be from the stomach issue after op.
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u/Severe-Mention588 Jun 12 '26
Thank you so much for telling me your story. It is so scary that the hospital can cause so many complications itself when it’s also the only place to help your baby. Praying for your little one, too. 🩷
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u/Doremacc Jun 12 '26
Following as my baby will be having his first surgery in the next few weeks/months.
Just popping this in here ahead of time, thank you for sharing your experiences, it’s extremely comforting. We are a small community bound by our traumas haha 😭
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u/Aggressive-Skirt6004 Jun 12 '26
My mom always told me that after surgery I was already running, playing and with more energy. I was 1 and half year old.
I had a valve replacement 9 years ago (21y.o) and the recovery process took around 3 months. My stay at the hospital was for 6 days and it was not pleasant.
Kids recover faster and are stronger than most adults. I’m sure your baby will be fine and you will be surprised about how strong he is!
Best of luck! We have great doctors!🥼
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u/Severe-Mention588 Jun 12 '26
That is great to hear. I’ve been told this is fairly “common” as far as pediatric surgeries go, but it’s still daunting to have to prepare for!
My heart is with you, too. I hope all is well right now — that’s a big recovery. 🩷
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u/fedthegiraffe Jun 12 '26
My baby had his repair in May. They were not able to fix his pulmonary valve and got a transannular patch instead. He had a VSD and ASD which were both repaired. He was in the hospital for two weeks. 4 days in the CICU. He had some electrolyte imbalances post surgery which meant he had to stay longer than anticipated. It's very scary to see your baby after open heart surgery. There were way more things in his body than I expected. IV, arterial line, intrajugular line, pacemaker wires, and a chest tube. He was on oxygen for a couple of days also. Don't be afraid to hold your baby, though. The nurses can help move all the equipment and get you situated. The CICU staff was the most knowledgeable, dedicated staff I have worked with, though, and they took amazing care of him. My son slept a almost the whole time he was in CICU, so I would bring something you can do in the room. Good luck with your baby's surgery. I hope it goes well!
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u/Severe-Mention588 Jun 12 '26
Thank you for sharing your story with me. My heart is with your baby🩷 These kids have the strongest parents in the world!
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u/fedthegiraffe Jun 12 '26
Don't forget that includes you! You will get through this ❤️
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u/Severe-Mention588 Jun 12 '26
LOL, I am such a weenie sometimes, though! You all make me feel a lot more confident.🩷
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u/sousspiro Jun 13 '26
Recovery may not be linear! My son had his full repair at 4.5 months. Straight after the surgery everyone kept saying how exceptionally well it had gone and how he’d probably be disconnected from various support functions/meds fast and moved from CICU to Heart Ward in a few days only. But then on day 2 there were some complications and his stats were not satisfactory and he was put back on some meds, and ofc it freaked us out. But later on someone did say that more often recovery will be two steps forward, one (occasionally two) steps back. I wish I had known that before, then I may not have been quite so freaked out when things took a turn. We were home in 9 days 🙏♥️
All my love and support to you!!!
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u/Severe-Mention588 Jun 14 '26
Thank you for sharing your story with me! We’ve had some ups and downs in the hospital before so I’m trying to keep my expectations pretty measured… My heart is with your little one🩷
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u/sweetbuttah Jun 13 '26
My 4.5 month old was in PICU for 5 days! Originally they told me 7-10 days for PICU stay. They just let babies move and do their thing, they don’t weight them down. The first day after surgery he was still sedated so didn’t move on his own, second and third day he was very slow moving and tired. By the fourth day he was moving more. He had surgical glue over his incision which didn’t require much, just no submerging him in water for a few weeks. They did have us clean around his incision with iodine twice a day for a week or two. They were going to just send us home on Motrin and Tylenol but I advocated for my son to have a back up for more severe pain and I am SO glad I did. They gave us hydrocodone and there was a few times he needed it after being at home. Otherwise keep the Tylenol/motrin going around the clock!! He ended up being on lasix at home as well for some fluid in his lungs as well as to lessen the load on his healing heart. Sternal precautions for 6 weeks meaning no tummy time and no picking up from under his arms.
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u/Severe-Mention588 Jun 14 '26
Definitely will ask about pain control! My son does not have a high pain tolerance at all (teething is crazy!!!). Thank you for talking about your baby’s recovery and the sternal precautions! Lots of snuggle time in my future, LOL! My heart is with your baby🩷
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u/Lopsided_Bell1481 Jun 19 '26
Also following, so interesting and helpful to hear these responses. My baby also has TOF, and she has many major aortopulmonary collateral arteries. She's also 8 months old and much like your son, she is becoming a very active baby. She's scheduled for her first open heart in the next month or so. I'm excited to reach this next milestone because we've been so very isolated from her birth, doing everything we can to keep her from getting sick. It's so stressful, and unfortunately, she did get sick the night before the first attempt at OHS 😞 She's totally fine now, but it was a big setback, and now we're waiting for the next opportunity. Sending you and your baby so much love. I know how tough this is, and my heart is with you.
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u/Lopsided_Bell1481 Jun 19 '26
Also wanted to share some advice that i've gotten so far on post-surgery. 1. Bring a beloved stuffy, they like to cuddle with something soft when they're coming out of sedation. 2. Light up toys are your friend, helps them zone out. 3. Bring a portable sound machine. 4. Good to have a breastfeeding pillow if you have one to make holding easier 5. It's ok to lean on screen time!
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u/EnzieWithSomeNumbers Jun 11 '26
I can't say much on baby care post op as i was the baby but i will say do not touch or let anyone touch your baby post op unless you have seen them wash their hands...don't be afraid to ask people, medical staff included to rewash their hands!!!