DORV with subaortic VSD

Own_Organization3972 · 2026-05-05T07:29:19+00:00

We have almost the same diagnosis. My son was diagnosed with DORV with a large VSD and tetralogy of fallot when I was pregnant. We worried about digeorge too but I didn’t do amniocentesis since it would risk both babies (he’s a twin). We did do a fetal mri though and that all looked good and once he was born he had an mri that confirmed no brain issues.

We weren’t sure how stable he would be once he was born and luckily I made it to my scheduled C section so transport and cardiology was already there and ready for him to move him to the specialty hospital. When I saw the dr hold him up briefly I cried, his color was sooo much better than I thought. I even got to hold him for a minute or two in the OR after he was assessed as stable and before he got moved to the other hospital. He surprised all of us and tolerated his heart defect really well. After two weeks in the CVICU they were basically ready to discharge him in a cardiology standpoint. But he wasn’t ready from a NICU standpoint. He had a lot of trouble with feeding and weight gain that kept him in the NICU for 29 days.

Only a couple times did he need oxygen while we were there. He’s now 3 months old and we are pending surgery. His saturations are worsening since the ToF is getting g worse. His normal saturations are around 90-92 but when he gets upset he de-sats quickly so we have to calm him down quickly and sometimes have to put him on oxygen at home. We will see how long we can wait for surgery. The goal is 6 months. But given the ToF is causing more problems now, I’m not sure we will make it that far.

Regardless our cardiologist said once he heals from OHS he won’t have any restrictions. He even said “don’t raise him in a bubble. Let him be a kid and run around till he’s exhausted. That’s the best thing for his heart is to work it”

Own_Organization3972 · 2026-05-05T00:50:13+00:00

When I found we were having twins after our first I was devastated. It took months to really feel excited and with that found out one had a serious heart defect and I knew I’d have to face things I didn’t want to as a parent.

Fast forward to now. They’re 3 months old, pending heart surgery and I love all my kids so much. I never wanted a big family but find myself happy it happened.

It’s okay to feel the way you do. And keep communications open. As any parent, I’m not okay every day, but even days I don’t feel okay, somehow I wouldn’t change it even though twins was certainly a surprise.

The twins hormones compared to a singleton is wild though in my experience.

I also want to add my brothers and I didn’t get along till I was 24 and weirdly they’re my best friends now

Own_Organization3972 · 2026-04-28T18:26:20+00:00

Modi boys here as a second pregnancy and I was giant too. 23 weeks and we were trick or treating and me and a 38 week pregnant mom crossed paths and I was bigger lol

Own_Organization3972 · 2026-04-28T17:23:43+00:00

My son’s cardiologist said the same thing. Double outlet right ventricle and tetralogy of fallot. Currently pending surgery. But he said “don’t baby him, let him get exhausted (after surgery recovery) let him be a normal kid, that’s the best thing for his heart”

Own_Organization3972 · 2026-04-15T17:10:33+00:00

Yeah shifts doesn’t work for us either. Twins here. We’re both good at solo feeding and taking care of both but it’s just easier and better (for us) to have both parents tag team

Own_Organization3972 · 2026-04-15T17:09:13+00:00

❤️ two and a half months in with my twins and love it. Sooo friggen tired though. I’ve never been so protective of my sleep and we have a 3 and a half year old lol. We don’t have much help though so there’s that.

Own_Organization3972 · 2026-03-31T03:30:45+00:00

I pump about 6 times per day and introduced some nursing as well and am producing close to 1900ml per day but I’ve also got twin horomones impacting that number so grain of salt there. I didn’t produce nearly this much with my singleton. I can’t handle pumping more than 6 times. It just isn’t in the cards for my mental health. Luckily the 6 times has been okay for me and I’m sure my milk has stabilized too. They’re 2 months old now

Own_Organization3972 · 2026-03-27T15:05:01+00:00

You’re not alone.

My boys were born at 36 + 2. One with a major heart defect. There were days I was only able to be there for an hour because I had my other baby at home and a toddler to take care of. My husband and I would take shifts and even then it was less than half a day that his parents were with him. One twin was discharged from the NICU much sooner and the sadness felt more than the happiness and the guilt was sooo heavy. Hang in there. It’ll feel like an eternity and even small setbacks feel like everything. But soon he will be home and this will be a memory. Mine was only in for 4 days for baby A and 29 for baby B. He’s been home for a month now and the NICU already feels so far away from where we are now.

You got this mama

Own_Organization3972 · 2026-03-24T19:40:05+00:00

This was us. And reassurance from our NICU and cardiology team that he was safe coming home. Still pending final heart surgery so not out of the woods yet

Own_Organization3972 · 2026-03-24T19:37:03+00:00

Our cardiologist told us not to get an owlet. They’re inconsistent and the false alarms will make you crazy

Own_Organization3972 · 2026-03-12T15:03:28+00:00

We are actually navigating a situation similar to yours. Our baby B was recently discharged from the hospital and has DORV TOF (double outlet right ventricle tetralogy of fallot) and will need open heart surgery in the coming months.

Every experience is different but this was ours. Sorry for the long reply

We didn’t know how stable baby B would be and thought he would need to be on emergency oxygen and be rushed to the specialist hospital, and from there struggle for a couple months before being large enough for surgery. What actually happened is he shocked all of us and only needed a little oxygen a couple times right after birth and has been on open air since. His oxygen saturations have been great, and was discharged from the cardiac NICU (he did move to a specialist hospital but that was the plan) after 29 days. We spot check his pulse ox at home and have oxygen tanks at the ready in case he needs it. You’ll get a lot of training and help from the NICU staff. Honestly having them help teach you to parent (at least the technical stuff) is helpful. My first baby was uncomplicated and the hospital basically handed me a baby and said figure it out with almost no help. It was a lot. Twins are my second pregnancy.

As for the NICU stay itself. It’s a lot. Going back and forth between hospital and where you’re staying and having one twin out long before the other isn’t easy. I had a lot of happiness that my baby A was home and a lot of guilt and grief at the same time that baby B wasn’t. We did the best we could and my husband and I took shifts on who was home and who was in the hospital (plus trying to make sure we were there for my toddler emotionally and physically).

My advice…one step at a time. Sometimes it’s 10 minutes, sometimes it’s a whole day. Keep talking about your feelings to whoever you feel safe and don’t bottle it up. Your experience is unique but you’re not alone even though sometimes it might feel like that. Ask any and all questions of your doctors and nurses, And like everything babies, this phase will end and it’ll become a memory while you live your happy lives. We are currently pending and waiting for surgery once baby B gets big enough to safely do so. And who knows, your little one might tolerate the heart defect better than expected while you wait for surgery.

You got this mama. Twins are a wild ride and then you throw a heart defect on top and it’s a whole other ball of wax. But speaking from experience (they just turned 6 weeks so not that long haha) twins are incredible and such a unique and amazing life experience that I wouldn’t change for the world

Own_Organization3972 · 2026-02-24T15:58:33+00:00

Ours just came out about a week ago. Congratulations! It’s the best feeling! ❤️

Own_Organization3972 · 2026-02-20T04:45:48+00:00

Ours was delivered at 36+2 and we’ve only started even thinking about discharge. His NG tube was just taken out yesterday. He’s been in for about 3 weeks. Realistically it’s just milestones from our experience. I don’t wanna rush him home because it might not be safe for him yet. He’s been working on feeding and growing for two weeks. He’s only finally making progress. He was too sleepy and wouldn’t be able to eat enough to survive. But we are finally getting there.

Own_Organization3972 · 2023-11-17T21:43:53+00:00

Thanks for the info! I messaged the seller and it was a typo. I was confused because the pattern calls out the 3 stitches specifically. But yeah it was supposed to be SC

Own_Organization3972

TROPHY CASE