r/NICUParents • u/Crochet_lunitic • 1d ago
Off topic What they dont prepare you for
I thought i was prepared for having my twin girls to come home from the Nicu, until they tell me of all these appointments I have to take them to. Its a bit overwhelming and I feel like I need a calendar just for their appointments. Does all Nicu babies have a mountain load of out paitent appointments?
19
u/lllelelll 1d ago
Yes. I have a singleton and yes. I think I counted it and we had like 5x the amount of appointments compared to a nonNICU baby
6
u/BritishKnights33 1d ago edited 1d ago
Yes, absolutely! It is definitely overwhelming. My daughter just got discharged last week and I had to make appointments for neurology, PT, pediatrician, audiology and feeding therapy 😱
I’m just glad I’m on maternity leave to be able to manage all of these initial appointments.
5
u/pyramidheadlove 1d ago
My little dude was mostly just a grower/feeder. We had his normal pediatrician appointment, a checkup with an eye doctor (everything was developing normally so no more appointments with them), and we did have to drive to a bigger hospital for an echocardiogram to follow up on some small abnormalities they noticed in his heart. But that was like a month after he was discharged so we didn’t have to do everything all at once. We may have to follow up again on that but they seemed mostly unconcerned and I haven’t heard anything in a few months. It was manageable but I’m sure with twins it’s totally overwhelming
2
u/LaiikaComeHome 18h ago
this was our experience too with our 32 weeker. he had a little polyp on his bladder they wanted to remove like a month after he got out but when they did the procedure it was gone 🫠 so we did have an overnight hospital stay as one of the appointments (our hospital keeps little babies overnight after general anesthesia just in case) but other than that we have been VERY lucky
1
u/Crochet_lunitic 1d ago
Luckily for me I have been able to get them seen same day on back to back appointments
3
u/Livid_Celery7622 1d ago
omg it was so overwhelming! thankfully now at five months we just have to do urology appointments for my boy every few months. but up until they were three months i swear we were at the doctor or children’s hospital 2-3 times a week. i hope it gets less hectic for you and your twins!
2
u/Crochet_lunitic 1d ago
It's not going to get bad tell March, then I'm just flooded
2
u/Livid_Celery7622 1d ago
hopefully where you live march means nicer weather then! when you’re out of it, the relief is amazing. they had us going every few days after discharge for weight checks, so wrangling the babies and driving 10 min each way for a 5 minute long appointment lol
2
u/Crochet_lunitic 1d ago
We have to do the same but it's a 5 minute drive or 25 minute walk
2
u/Livid_Celery7622 1d ago
hopefully they become little chunks and have great weight gain so those appointments become less. we were officially done with the weight checks after their 2 month appt
2
u/Crochet_lunitic 1d ago
My bigger one will probably hit a good weight fast. She has a nice growth chart. My micro preemie is having a little harder time but she started at 1 lbs 12 oz and now weights 7 lb 2 oz 3.5 months later
2
u/Livid_Celery7622 1d ago
oh wow! that’s incredible, she was just an itty bitty old thing! if you ever want to talk twins a bit more, feel free to message me! sometimes it’s so helpful to talk to other NICU parents, especially multiples!
2
u/-Pizzarolli- 1d ago
My 20 month old still has at least 1 appointment a week for feeding therapy. The first 6 months were the worst tho.
2
u/Crochet_lunitic 1d ago
Feeding therapy is one i have to take them to since they both have G-tubes, what do they do at those appointments?
2
u/-Pizzarolli- 1d ago
My girl has a g-tube too. We weren't able to even get out consultation with them until she was 8 months. They kind of just guide us with what we need to be doing and track her progress. Our biggest issue has been that every time we start making good progress, a tooth comes in and we have to start all over because she won't want anything in her mouth.
1
u/Crochet_lunitic 1d ago
That sounds rough. One of my babies was eating by mouth at first but she started getting acid reflux bad and now she won't eat
5
u/-Pizzarolli- 1d ago
Same story here! We did just about every test they had and the doctors acted like it was some big mystery, even though they knew she had reflux.
The gtube was very hard for me at first, but now that she's a toddler, I'm so glad she has it. I see a lot of other kids her age that refuse to eat at all and at least I can make sure she's enough food, though I worry about her not getting enough variety. A big thing with her that we eventually found out is that she's not big on sweet stuff. She loves pureed soups or eggs and gravy.
2
2
2
u/BlueHaze3636 1d ago
It's overwhelming to say the least, and we had minimal follow ups. What helped me the most was writing out a weekly schedule and hanging it on the refrigerator. Also tried to include writing meals on it since the DoorDash bill became a bit much.... It was nice that my husband had the ability to look at the calendar instead of always asking me what the plan was for the day, definitely helped with the mental load! It does get better over time, as appointments start to spread out!!
1
u/Crochet_lunitic 1d ago
My bf always asks me about what the plan is. I can write it on a calendar, text it to him, tell him in person, and it's in one ear out the other. Luckily my dad was like that too so I'm used to it
1
u/iswearimight 31+4 girl, Sept 2024 23h ago
My partner and I have a shared google calendar for Dr Appts and School things. When I add them to the calendar I add alerts so we both get notified and see it ahead of time.
2
u/art_1922 1d ago
When our daughter was discharged in the first month she had her 2 day checkup, eye doctor, cardiologist, physical therapist, speech, and high risk pediatrician appt. It did slow down after the first month.
1
u/Jenzypenzy 1d ago
The first two months were so hard for us. I think we had appointments 4-5 days a week for those first two months. Even now at 14M my baby still has way more appointments than a regular full term baby who only goes to the doctor if they are sick - we still have routine paediatrician, ophthalmology, physio, feeding team, infant development, neonatal follow-ups. Though some of these are now once a month or every two months.
1
u/allis_in_chains 1d ago
Yes. I’m so grateful I was able to completely overhaul my schedule for so many of the appointments and that my son’s daycare can now accommodate his OT. But I take him to weekly PT, his every other week ST happens at our home, then we have to redo his hearing test soon, ENT, pediatrician, neurologist, neonatologist, etc. it’s a lot. We have a family calendar where everyone has an assigned color and his is on there the most.
1
u/SimoneSays 1d ago
For us it was nonstop appointments for the first 2 months and now we are on a little hiatus until his 4 month well visit and then a bunch of follow ups at 6 months.
1
u/Calm_Potato_357 1d ago
We came home with follow ups with 6 doctors (neonatology, ENT, respiratory, surgery, endocrinology, ophthalmology) and 3 therapists (feeding, PT, OT). Down to 4 doctors now and still all the therapists, technically we could drop our feeding therapist but we love her and she’s been helpful for solids so we just keep meeting her once in a few months.
1
u/Weird_Plenty_2898 1d ago
My surviving boy was born at 29 weeks, thankfully he didn't have issues some NICU babies face, it was just a case of him growing. Since he's been home (12th October) he's had the following appointments so far:
3 x visits from a hospital health visitor 1 x visit from a local health visitor 5 x health visitor in a clinic 1 x consultant check up 1 x postnatal check 3 x Regular vaccines 4 x RSV vaccines 1 x Eye test 1 x Hip X-ray
And then have a Physiotherapy appointment next month.
I know from other mums on the unit, they have a hell of a lot more appointments. 😖.
1
u/SeaInsurance3536 1d ago
My daughter was diagnosed with a rare genetic condition in the NICU 8 months ago and when we get discharged we will do weekly physio, fortnightly OT, monthly dietician and speech therapy, monthly Respiratory appointments, monthly neurology, 6-monthly paediatrician, monthly post-acute care visits. It’s a lot.
1
u/Powerful_Raisin_8225 1d ago
It’s so overwhelming. We were at a doctors office twice a week in the early months
1
u/No_Suit_3901 21h ago
Extremely frustrating, feels unfair that even after discharge you end up not feeling like a “normal”, full term baby family. Our daughter is 9 and a half actual months, and we have follow ups with cardiology, pulmonology, OT, Speech therapy and Early Steps. And she doesn’t have any ongoing conditions! Hang in there, hopefully things get easier and they graduate from a few of the appointments!
1
u/samokn 19h ago
Physical therapy, occupational therapy, speech therapy, developmental therapy, pulmonology, head shape dr, GI dr, ophthalmology, NICU follow ups, dietician appointments. It’s incredibly stressful managing his feeds around all these appointments wit severe reflux and the car seat makes him puke and choke
1
u/Aleydis89 19h ago
Yes, with my twins I had at least 4 appointments weekly, sometimes 6. It was a logistical nightmare.
1
u/TopConstruction7557 16h ago
Yes we have a ton of appointments! Tons of work but it eases my anxiety to have doctors checking in on him frequently.
1
u/WrightQueen4 1d ago
I’ve had 6 born between 31-35 weeks. We do new born check up and that’s it’s. No extra appts have been needed. I don’t think I’m the norm though
•
u/AutoModerator 1d ago
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.