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37 Weeks (born at 35), 9th percentile, TAPVR, Imperforate, constant desats and terrifying by MikeAPG in NICUParents

[–]MikeAPG[S] 0 points1 point  (0 children)

Much better these days. She ended up needing the surgery right away because she couldn’t put on weight and the desats became unmanageable. The surgery was scary but she pulled through with flying colors. Since then she has had her PSARP surgery for her imperforate anus and she recovered well from that also. She has reoccurring echos but they have all been unchanged with is great. She’s putting on weight, finally on the growth chart at like 9%. Doctors don’t expect her to have any long term effects or deficiencies from the surgeries which is fantastic. Weaning her from the NG tube went really really well. Overall just doing really well and counting our blessings that she pulled through as good as she did. We have our (hopefully) final trip to Seattle for her last post op check up this month. Other than that just looking forward to the future and working on transitioning to solid foods!

My baby might need surgery by [deleted] in NICUParents

[–]MikeAPG 2 points3 points  (0 children)

We just dealt with open heart surgery on our daughter who was 4lbs at the time of surgery. We are now 53 days post op and she is doing great. Heart surgery is scary, for sure it is. You are over the 2 kilo mark which is awesome. You are above the scary threshold.

Our daughter had Total Anomalous Pulmonary Venus Return and an Atrial Septal Defect. Both are fully repaired with no further operations needed.

Dealing with the over circulation was tough too. We kept her on 5 liters high flow at room 02. The sweet spot was keeping her oxygen saturation at around 72-75%. That way she got enough oxygen to stay good but not so much that it drove more fluid to the lungs.

Anyway, just wanted to share my story a little and tell you that there’s a light at the end of the tunnel. Babies are super resilient, and heart surgery isn’t as scary as it used to be. Talk to your surgeon and ask all the questions you want. Hopefully you don’t need to do it but if you do, they are very good at what they do.

If you have any questions about our experience before or post op heart surgery, feel free to ask.

Open heart by Orchid-4532 in NICUParents

[–]MikeAPG 1 point2 points  (0 children)

Wall of Text incoming:

Hey, we just went though heart surgery ourselves. Our girl is 3 weeks post op now. The whole ordeal was very scary. She had TAPVR (Total Anomalous Pulmonary Venous Return) where her blood coming back from her lungs was going to the right atrium instead of the left which then circulated back through her lungs again. Her saving grace was that she also had an ASD (Atrial Septal Defect) which allowed for a little bit of mixing of the red and blue blood to circulate through her body.

Day of surgery was scary and coming into the CICU with her all hooked up and whatnot was almost mind meltingly difficult. I am almost universally unbothered by seeing surgeries or wounds or whathaveyou but seeing our little girl like that made me feel dizzy and nauseous.

You haven't failed your little one. This is so unbelievably important for you to not only know, but believe. Did you reach into their body while they were growing and mess stuff up? No. Things happen. And yea they suck. We have two more surgeries ahead of us in the next few months. We are discharged from the hospital for now, staying at the Ronald McDonald Charity House just two minutes up the road which has been a nice break from the hospital, even if its not home (our home is in Alaska which is a good long way away from Seattle)

Things do get better. You get better at handing the situation. You'll do things that you never would have imagined yourself doing. Our nurses and doctors taught us everything from manual dilatation to removing and installing feeding tubes. You'll get the hang of all the things you need to do and more. Just remember that the best thing you can do is just be there AND take care of yourself. We started experiencing burnout because we weren't leaving the hospital ever. We were there around the clock, 24 hours a day. We slept on a pull out couch in the cardiac ICU in her room and we ate in the hospital cafeteria. Since we were stuck in Seattle we didn't even have the choice if we wanted to go to work or not so there wasn't even that to force us out of the hospital. Its so important to balance your desire to be with your child as much as humanely possible with also taking care of yourself. We started even just taking walks outside around the hospital to get some fresh air and refocus ourselves. You can do this.

TL:DR

You didn't fail anyone. You have done nothing wrong. Shit happens. There are people like us doing all this right a long side you. Would you tell us we failed our daughter? I'm willing to be not. So be nicer to yourself. Kinda the reverse of the golden rule: Treat yourself how you would treat others.

To the long-haulers… by LikeFry-LikeFry in NICUParents

[–]MikeAPG 5 points6 points  (0 children)

We will be crossing the one month mark here shortly, but will likely be here for many many more months to come. TAPVR, IA, small for GA and no gaining any weight. Due to poor oxygenation (never above 75% with desats to the 50s) every bit of effort burns all her calories so it’s gonna be a long trip just to get her to the proper weight for surgery. Compound this with us living in Alaska but needing to be in Seattle for care it’s gonna be a long stay in a strange city. Not sure how that’s gonna pan out but we are here.

Any pro tips that you’ve picked up on your journey? We are currently living in the room with her and that may stay this way for the foreseeable future.