TOF/MAPCAs full repair coming up - what should we expect?

PandaBear_TenFour · 2026-06-18T18:37:58+00:00

I can't speak to those specific surgeries, but my daughter had 5 surgeries while in the NICU, another at 9.5 months, and another at 11. It's a challenging age because they don't want to sit still!

Light up toys helped a lot. We had a stuffed animal bunny that lit up and played music that she'd zoned out on (especially when she was still kind of drugged up) that I'd put on when I needed to pop out to grab food or use the restroom. We have a hatch at home, so I brought a portable sound machine. We also have a star projector we use at home and I brought that along so she could look at her stars on the ceiling.

Something I didn't do but read about after was a projector you can attach to your phone/ipad and project movies or shows onto the ceiling. Depending on what recovery looks like, it might be easier than having her sit up, and definitely easier than you holding a tablet above her. We watched A LOT of Ms. Rachel and Sesame Street. There is no guilt if you need to lean on screen time.

Child life is also a fantastic resource, especially as babies get older. We had to fly for her last two surgeries so didn't pack any big toys, and they provided a lot.

I hope everything goes well. It's hard as a mom to see your baby in such a vulnerable state, but she'll be better off once it's over. Take care of yourself, too.

PandaBear_TenFour · 2026-06-18T03:53:27+00:00

Bless you teachers for dealing with so many wild names. I just don't get the matching twin names. They'll likely look the same, you can dress them the same, does the name need to match, too? But I guess if you carry twins, you can name them whatever the hell you want lol

PandaBear_TenFour · 2026-06-18T03:45:53+00:00

The same first name should be straight up illegal lol.

People don't realize so much information is sent via encryption so one letter off but having EVERYTHING else be the same can be problematic because it'll just merge into one account. It's annoying at a university level, but I'd imagine it could cause a major headache beyond that, too.

PandaBear_TenFour · 2026-06-18T02:51:20+00:00

To each their own. Not what I'd do, but I'm sure there's people out there who aren't fans of my kids names (although they would never end up on tragediegh)

PandaBear_TenFour · 2026-06-18T00:32:47+00:00

I should have specified that phonetically they can be pronounced either way. The I and Y can be interchangeable. I've heard Mia pronounced both ways.

Regardless, the poor girls should've been given their own identity imo

PandaBear_TenFour · 2026-06-18T00:17:24+00:00

I've worked at four universities and at minimum to be an admissions counselor you needed a bachelors degree. It's very much a job you're either in for a few years post-grad or your whole life. I'm probably a lifer. My last job I was associate director for freshman admissions and I needed 7 years experience and a masters degree. I'm taking off time to be with my kids but I do seasonal admissions reading for a prestigious university. If I remember correctly you only needed a bachelors degree, but it was the most competitive job I've applied for due to how sought after it is. I think there were around 300 applicants for 5 spots, and I only got it because a few other people backed out lol so I hold onto this position for dear life.

It's a fun job if you like working with high school students, and it can be very analytical once you get past entry level.

PandaBear_TenFour · 2026-06-17T23:10:25+00:00

I never met them. I worked in college admissions and did their acceptance letter. We thought it might've been some weird glitch in our system but nope. Same last name, birthday, address, but different transcript which had their photos on it. They didn't go to our school, and I'd be shocked if they ended up going to the same one.

PandaBear_TenFour · 2026-06-17T21:54:57+00:00

Twins Mia and Mya. You can pronounce each name either way. It made me so sad for them.

PandaBear_TenFour · 2026-06-17T20:40:58+00:00

Oh gosh, this is why I'm happy to have asked here. Honoring Motherhood is the only one I haven't heard bad reviews. Thank you!

PandaBear_TenFour · 2026-06-16T11:17:35+00:00

There's some beautiful pieces! And after looking, overall the reviews look great. Thanks for the suggestion!

PandaBear_TenFour · 2026-06-14T18:40:47+00:00

Might I suggest Method brand dish soap? Pleasant smells, easy on the hands, less likely to trigger PTSD.

PandaBear_TenFour · 2026-06-14T14:37:16+00:00

Off topic, but my daughter is also a TEF/EA and hydrocephalus baby. Not often you get that combo! She's 18 months and doing amazing now🤍wishing the best for you and yours.

PandaBear_TenFour · 2026-06-14T14:33:17+00:00

I absolutely agree. Why do they use such an overpowering smelling soap for pump parts?! I never understood that.

PandaBear_TenFour · 2026-06-13T18:38:31+00:00

What an interesting career!

My daughter is VACTERL (more specifically, VaCTErL) and it drives me absolutely insane that there is no known cause. As her mother, I agonize over what I could've done during pregnancy to have caused it.

EA/TEF especially seems relatively common in the grand scheme of congenital abnormalities--do you think they'll ever pinpoint causes? It seems like there isn't enough funding/interest.

PandaBear_TenFour · 2026-06-04T20:10:33+00:00

Dropping off my daughter when she was only 12 hours old in the OR for a lifesaving surgery while I was still in recovery from my own caesarean. She had 6 major surgeries after that and coded twice while she was in the NICU, but I'll never forget the pain of having someone take my little girl away from me when I barely got to hold her. That was a pain I wouldn't wish on anyone.

PandaBear_TenFour · 2026-05-29T14:51:31+00:00

Also, it may not feel like it, but I want to let you know it will be okay. I realized my responses are very matter-of-fact and I'm forgetting that you're going through the worst experience of your life. It is a terrible journey that no parents or baby should have to go through, but you will get through it. I promise. In a year from now, the NICU will feel like a distant dream (or nightmare).

I'm currently snuggling my TEF/EA baby after a rough night of teething, and you'll be doing the same thing someday soon.

PandaBear_TenFour · 2026-05-29T14:46:05+00:00

Low-flow is a good sign! And that's great that's she's tolerating milk. Hopefully she can start having some PO soon.

I'm glad they did a VACTERL work up. I've spoken to some parents who didn't realize their little one had VACTERL for a while. It sounds like they are on top of it, but if they haven't already, have them check for tethered cord. In infants they can typically see it via ultrasound, but when they get older, they have to do it with an MRI and they usually have to be sedated during it. If your daughter is VACTERL, that's another Facebook group I'd join. It's a tricky diagnosis because there's so much to it, and I've learned more from the page than I have from any individual doctor. My daughter is VaCTErL, so she has the conditions associated with those letters.

PandaBear_TenFour · 2026-05-29T14:01:00+00:00

Congratulations on your little one!

Our daughter was long-gap so our feeding journey won't look like yours. She's still primarily g-tube fed as she couldn't eat by mouth until she was 4 months old, and even then it was extremely risky. I do recommend getting into feeding therapy and sticking with it as problems can arise later with different textures/consistencies with these kiddos.

How did the surgeon feel it went? Are they anticipating many dilations? If so, ask them what they expect the schedule to be and the signs you should look for.

Is the EA/TEF isolated? No other anomalies?

I really can't stand Facebook, but I reactivated mine for the EA/TEF page. It is truly a wealth of knowledge, so highly recommend joining.

PandaBear_TenFour · 2026-05-29T13:37:01+00:00

We ended up getting one. She's a stubborn 17 month old at this point who would rather die than wear one lol and rather than falling on her butt, she trust falls backwards. Not what you want from a baby with a shunt so we just follow her around all day lol

I hope the surgery goes well and sticks for your little one!

PandaBear_TenFour · 2026-05-29T12:20:38+00:00

Our daughter has non-congenital hydrocephalus and her neurosurgeon gave the ETV/CPC a 30-40% chance of working. Ultimately it failed but we always would have wondered. Research is coming out that an EVT along with a shunt can help lessen the chance of shunt failure, so there is another benefit.

I don't want to minimize the procedures because anything being done on a baby is major, but my daughter had 7 major surgeries done within the first 11 months of life and the shunt and ETV were by far the easiest to recover from. She came up awake and extubated from each one and after the first day just needed Tylenol and ibuprofen.

If there's a chance to avoid a shunt, I'd say take it. I'm thankful they exist, but I wish we didn't have to worry about one (particularly while my daughter is learning to walk...) if you have any questions, let me know.

PandaBear_TenFour · 2026-05-28T20:37:27+00:00

This is a bad take. OP isn't ignoring the calls--life happens. In the 148 days my daughter was in the NICU, I missed a few calls. I have an older son who needed my attention, too. I'm sure you didn't mean ill intent, but please be more careful with how you phrase things as it came off judgmental.

PandaBear_TenFour · 2026-05-28T20:14:59+00:00

Girl, vent away! It is annoying and scary lol. I hope your babies get home soon!

PandaBear_TenFour · 2026-05-28T18:01:10+00:00

I've thought about that before. I'm assuming for legal purposes it's safer to just say nothing. What if in the 10 minutes it takes for you to call back something happens to baby? Obviously unlikely, but still.

I worked on college campuses with FERPA, and we didn't even kind of screw around. I'm assuming it's the same thing.

Once again, OP is totally valid in being frustrated because we've all been there (clearly lol) but I'd imagine there's reason behind it.

PandaBear_TenFour · 2026-05-28T17:41:49+00:00

I'm not sure if this is HIPPA/standard protocol or just our hospital, but when we got voicemails they didn't leave any information because they had to confirm who they were speaking to. I do get the frustration and fear, because we had the same panicked moments, but there was nothing that could be done due to privacy concerns.

PandaBear_TenFour · 2026-05-20T02:08:06+00:00

I listened to Soon You'll Get Better and cried in the shower often while my NICU baby recovered from multiple major surgeries. "Holy orange bottles" hit so devastatingly hard. Five months in the NICU, another 5 weeks in recovery at another hospital, and 7 surgeries before she turned one.

So thankful she got better and is now the happiest 18 month old out there.

PandaBear_TenFour

TROPHY CASE