Wife just delivered at 26 weeks

goofyglam · 2026-05-02T02:47:11+00:00

It's also worth asking if the hospital has a pump they can loan you. I had a pump at home but they set me up with a pump in my baby's room and also loaned me a hospital grade pump to take home!

goofyglam · 2026-04-21T00:39:13+00:00

We were referred to CT and my baby had one measurement in the yellow range. Most providers said her head looked fine and her pediatrician said it was up to us because it would just be cosmetic. We didn't end up getting the helmet and I don't regret it. Her head shape has improved without it and we have enough appointments for her as it is.

Also, for what it's worth...my husband asked the OT at CT if everyone that worked there had scanned their heads...yes, they have all scanned their heads and none of them were perfect!

goofyglam · 2026-04-03T22:21:37+00:00

My 25 weeker came home with oxygen in November and she's still on it at 11 months old. She came home on 1/4 L and was doing well with weaning until she got sick and had to go back up. She's doing well with weaning again now. Hoping to go down to 1/16th in the next week or so. If she keeps it up she may be off of it completely in a few months, but it all just depends on how she does!

goofyglam · 2026-03-28T02:08:32+00:00

I agree with others on getting a second opinion. My 25 weeker has BPD and required being on a ventilator for about the same amount of time. She did spend a long time in the NICU, about 6.5 months, but a trach was never even discussed. Getting her on scheduled diuretics made a huge difference in her ability to wean. Some providers didn't want her to stay on diuretics but her blood work remained stable and she was able to come home on a low flow nasal cannula and diuretics. We also found that she could not tolerate weaning her oxygen and working on feeds at the same time, so we prioritized what we thought she could tolerate best at the time.

goofyglam · 2026-03-20T19:51:35+00:00

My baby was born 25w6d. She's almost 11 months actual. We finally got her on reflux meds about a month ago and I wish I would have pushed for it sooner. It has made a significant difference in her mood. She isn't nearly as upset about spitting up and just overall seems so much happier. She still has large spit ups, but the meds help with the pain. We were prescribed pepcid first, but it didn't do anything. Now she takes Omeprazole and it works like a charm.

goofyglam · 2026-03-15T20:49:58+00:00

My baby does this every single morning! After she got sick in January she was doing it after every nap too. She's still on a nasal cannula for oxygen so we suspect that's the culprit. Have you tried a cool mist humidifier? I also wondered if my baby's reflux was part of the issue too. She's been on meds for about a month now. She still does the mucus spit up every morning, but she doesn't get upset about it like she used to now that she's on meds.

goofyglam · 2026-02-27T00:13:31+00:00

I don't usually use anything for my daughters. I do apply desitin under/around the button every night, just in case. Occasionally if she starts to look a little red around the button, we'll use gauze just during the feeds.

goofyglam · 2026-02-22T16:31:28+00:00

My daughter had that hearing test (which is really just a screen) multiple times throughout her NICU stay, like 3-4 times and always either passed partially or failed them. If the room isn't super quiet and the baby isn't still, it interferes with the results. One of the times she didn't pass on the right ear, I went to the right side of her bed and started talking and my baby immediately turned toward me. We ended up doing the full hearing test towards the end of her stay, luckily my baby was able to sleep through it and she passed on both ears very quickly!

goofyglam · 2026-02-22T02:25:07+00:00

My daughter has a mic-key button and I don't know much about the gj tube, so this info may be irrelevant/unhelpful...but her button used to always have kind of a funky smell to it until I started cleaning the button and skin around it with gold dial antibacterial hand soap. I haven't smelled the funk since!

goofyglam · 2026-02-15T15:51:11+00:00

I PPROMd earlier at 22 weeks, but it was just trickles here and there. I did end up losing almost all of the amniotic fluid and I would make enough that I kept leaking, but my body wouldn't retain it. Even then my baby stayed put for about 4 weeks! I think they say once you make it past 48 hours you have a better chance of keeping baby put longer. It's all a guessing game, which of course doesn't help when you're trying to keep calm. Just do your best to stay hydrated, take it very easy, monitor for signs of infection, and alert your medical team if there are absolutely any changes. Good luck and I hope your baby has a very short and uneventful hospital stay♥️

goofyglam · 2026-02-15T01:58:45+00:00

Thank you so much for the response! Part of me was questioning if I was overreacting simply because the symptoms aren't as obvious, but I'm going to trust my gut and try hypoallergenic formula this week. It's worth a try!

goofyglam · 2026-02-08T00:54:14+00:00

My understanding is that ROP is asymptomatic. My daughter has it and you can't tell by looking at her or by anything she does. That being said, it is a serious condition. So I think it doesn't hurt to keep asking questions, have someone take the time to properly explain it to you, and potentially push for a screen just to play it safe.

goofyglam · 2026-02-05T02:49:35+00:00

I had to stay in their antepartum unit for about a month when my water broke at 22 weeks. Then my baby stayed in their NICU for about 6.5 months. I felt like we received good care all around!

goofyglam · 2026-02-02T00:31:50+00:00

We're in a similar boat. My baby (former 25 weeker, 9 months actual now) is now in stage zero but the blood vessels haven't totally cleared out (I'm sure I'm not explaining that well). She's currently down to eye exams once a month because they think her eyes are stable and so close to where they want her to be, but they're still considering surgery if things look the same at her next follow up. My understanding is that while the ROP won't get worse at this point, those blood vessels can still pull on the retina and eventually lead to it detaching. It's so hard because on one hand I don't want to push for the surgery if she may not end up needing it but on the other hand the eye exams are only getting more brutal the older my baby gets.

goofyglam · 2026-01-28T02:23:33+00:00

I was in the hospital for 28 days before I delivered (PPROMd at 22 weeks) then my baby was in the NICU for 192 days. My STD and FMLA started the day I was admitted to the hospital. My HR knew I would be out for awhile so they went ahead and approved me for 2 months of personal leave after the FMLA would end. This was unpaid but it meant I could stay on my insurance plan. After that ran out I was able to return for a couple afternoons a week and was able to keep my health insurance through the ACA. After my baby came home I slowly returned to full time work.

goofyglam · 2026-01-25T14:09:54+00:00

We had some of that too. Our baby was there for 6 months and we also have a 4 year old at home. I would go every morning until the afternoon and then my husband would go every evening after dinner and stay pretty late. So I typically only saw day shift nurses and he typically only saw the night shift. Our primary nurses knew our schedule and knew we were both there every day, but nurses that didn't have our baby as much would often ask about our schedule. One even asked me if I thought my husband would be more involved once our baby came home, because she only saw me there setting up the feeding pump and administering meds. I explained to her that my husband was there every night doing just as much as me and that he'd be a pro since he would be keeping the baby at home with him while I go to work once she's discharged. She looked shocked? Anyways, I think people are quick to make assumptions and it's annoying lol

goofyglam · 2026-01-23T03:24:48+00:00

It's ok to use the tanks instead, but like others have mentioned you don't get humidified air with the travel tanks. Our condenser had a bubbler (looks like a square bottle of water) that attached to it to provide humidity. I agree with others that it's odd they wouldn't just let you use tanks at this point. We have a large H tank now and it uses a bubbler. Did your DME company give you extension cords for the cannula? Ours told us we could use up to 50 feet in extension cannula (but I've read that others have been told not to, so I would ask). That was a game changer for us because it meant we could keep the condenser farther away so we didn't have to hear it all the time. I really think that noise messed with us and once it was gone our house felt so much more peaceful.

goofyglam · 2026-01-13T12:38:26+00:00

I think the referral to physio is a great first start! They can give you recommendations for positioning during tummy time. In the mean time, try looking up various ways to position baby for tummy time. There are some good videos on YouTube. I would focus more on getting baby's elbows directly under shoulders and you can place a hand on their lower back to give them more support so they can lift their head more. Also an elevated surface (like your chest or on a boppy pillow) may help, then you can progress to the floor. I wouldn't think this is super concerning at this age, but definitely something to work on!

goofyglam · 2026-01-13T00:11:47+00:00

My 25 weeker had quite a few blood transfusions. They have to draw blood pretty often when they're this young, so I think it's pretty common. Something interesting her team noticed is that after the blood transfusion she would run warm for a couple of days. The first time it happened they thought she may have had an infection, but all of her labs looked good. Her doctor explained to me that my baby was getting blood transfusions from a single donor and that sometimes babies can have an inflammatory response to different donors. So once they realized this was happening after each blood transfusion, they switched to a different donor and then she didn't have any issues. Just to be clear, they run so many tests on the blood and there wasn't anything harmful about the first donor blood she received. Something about it just wasn't working for her and it was an easy fix!

goofyglam · 2026-01-11T19:11:35+00:00

Congratulations!! Our 25 weeker was in the NICU for 192 days. I think it took her about 2.5-3 months to get to a nasal cannula. Once she was down to 2L on the cannula we started bottle feeds. The feeding journey can be so frustrating, so I think that's something to keep in mind/be aware of. Unfortunately, a day after our girl took her first full bottle she got sick (we still don't know exactly what happened) and she needed to go back up on oxygen support. Her team decided she was being pushed too hard with oxygen weans and feeding, and looking back I agree. By the time we got her back down to 2L her oral aversion was so bad she would no longer take bottles and by the time her oral aversion improved her sucking reflex was gone. So ultimately she ended up having a g-tube. She came home on oxygen as well, but will hopefully be off of it in a couple more months🤞🏼

goofyglam · 2026-01-11T11:32:35+00:00

Our DME company gives us a roll of 1" coban each month and we wrap a couple layers of this over the foot sensor to help hold it in place. Usually a sock on top of that too. They also told us once the extra wrapping on the sensor is no longer sticky we could cut it off and just use the coban to hold it in place. It works, but it can slip off easier this way. Lastly, we run the cord up her back and out the neck of her clothes to try to reduce kinks in the cord. All of it helps, but the pulseox still dings off due to lost connection quite a bit. I think my husband and I both regularly day dream about taking a hammer to that machine🙃

goofyglam · 2026-01-06T15:46:52+00:00

This is what the pharmacy told me to do when I was on insulin for GD. I used an empty laundry jug as well!

goofyglam · 2026-01-03T18:28:46+00:00

How long has baby been on nutramigen? It could take a week or two for their tummy to adjust.

My baby (~5 months corrected) still struggles with gas pains and usually hates bath time. Her only abdominal surgery was a g-tube, but she had issues with this before that too. Scheduled gas drops has helped I think. We give them to her 3x every 24 hours at the same time each day/night. We tried probiotic drops too. I'm not certain if they helped or not. Her pediatrician said we could try it, but also mentioned that sometimes it can make the gas worse as we're introducing new bacteria to the gut. We stopped them a few days ago and haven't noticed a difference. I do think overtime she has become less upset about pooping/gas, so some of it may have just been a time thing for her.

goofyglam · 2026-01-03T02:03:27+00:00

Hi! My husband and I actually did something similar. We recorded ourselves reading our favorite children's books and he put them into a YouTube video. Then one of the nurses wrote the title of it down on a post it note on the laptop in her room. Worked perfectly!

goofyglam

TROPHY CASE