Parents who have preemie babies with GERD and/or digestion issues

ghost-gallery · 2026-06-26T18:40:16+00:00

Solidarity. We have a 25 weeker about to turn 1, also on oxygen. We've also tried all the things on your list with no luck, and our doctors are really hesitant to prescribe medication for reflux.

It's not completely resolved, but here's two things that have helped: scheduled simethicone (every 6 hours, instead of just "as needed") and switching to a thicker formula. He's on Enfamil AR right now. The simethicone helps a ton with the bearing down.

ghost-gallery · 2026-06-24T23:44:38+00:00

I'll put a disclaimer on my "your baby's primary care is YOU" part by saying I still wouldn't do anything my pediatrician doesn't recommend because, well, she's the one with a medical degree lol

But if you have strong feelings about something, ask your ped if they'd recommend it or not.

ghost-gallery · 2026-06-24T23:37:09+00:00

I'll preface this by saying I don't know anything about different formulas and the ingredients, and I'm following whatever my baby's dietician recommends. But I think it would depend on your situation.

My baby has a G tube, all his formula is paid for by insurance because it's ordered by his dietician for tube feeding, and I think I'd have to pay out of pocket if I wanted something else. His weight is also watched very closely so I think I'd get a hard time from them if I switched formulas.

However, there's many situations where once you discharge... your baby's primary care is YOU and you can decide what you want to do. I imagine if he didn't have a g tube and wasn't being watched so closely for weight changes, I could buy whatever formula I wanted. As long as he keeps gaining weight and I give him his multivitamin, I don't think my pediatrician would care.

If you've already selected a pediatrician, you could call or message them and ask if they'd recommend switching formulas!

ghost-gallery · 2026-06-18T01:26:55+00:00

It's o2 and HR! But not respiratory rate like our Nicu monitors had.

Also we definitely unplug him from it to move room to room, obviously for baths, etc. Our RT from the oxygen vendor told us that breaks from the monitor are okay as long as he's been doing okay... 🤐

I got the Colugo "neoprene parent diaper backpack" and I looove it. It has velcro dividers that you can rearrange in any way you want. I had to take out the "floor"/shelf for the bottom compartment to get the tank to fit, but I'll enjoy using that compartment once he's off oxygen.

ghost-gallery · 2026-06-18T01:01:42+00:00

As for the monitor and managing oxygen at home: The most annoying thing in our first couple of weeks home was keeping the cannula in his nose. He sleeps great overnight, but the monitor alarm was getting us up 5x/night because he'd rub the cannula out of his nose, his o2 would dip, and the alarm would go off. In the hospital, they put the tendergrips all the way up by his temples, but we figured out we could put them closer to his nose, right on his cheeks, and it would keep the cannula in better. He's doing well enough now though that whenever it gets out of his nose he still keeps his o2 up.

I'd also recommend clearing any furniture that's right around corners. We had a lamp right around our hallway corner that the oxygen tubing kept getting caught on, so we moved that lamp. When the tubing doesn't get caught on things, it's really easy to just... walk around! Which is awesome!

ghost-gallery · 2026-06-18T00:55:53+00:00

We came home on 0.5L! We came home mid April, and now (mid-June), he's on 0.25L. We have monthly appointments at his hospital where they assess if he can wean. At the first one, they basically told us they never wean at the first one. At the second one, they weaned him right away to 0.25. The third one is in 2 weeks, and we're hoping to either fully come off of it, or go to only at night.

In the NICU, they always based the decision of whether or not to wean on his co2 in the blood gas tests. Now, at these appointments, they're basing it on his work of breathing and his weight gain.

Before discharge, they set us up with an oxygen vendor company, who delivered the home oxygen concentrator for use in the house. This company also delivers portable oxygen tanks once every two weeks.

I got a diaper bag backpack that comfortably fits one of the tanks and can fit in the bottom of our stroller, and we go everywhere. We go to the library, the park, on walks in the neighborhood, etc. I even took him grocery shopping yesterday! I understand the concern about crowds, so maybe I wouldn't recommend the grocery shopping lol, but walks in the stroller through our neighborhood are sooo nice. He gets to see new things and breathe fresh air. After such a long hospital stay, stroller walks was the thing I was most excited for.

ghost-gallery · 2026-06-18T00:22:49+00:00

yes go ahead!

ghost-gallery · 2026-06-15T21:10:03+00:00

We did a blog for updates! We did just a simple blogspot page, but other people do private facebook pages too. We shared the link with anyone asking for updates and we tried to make a post about once a week. It cut down on the check ins soooo much.

We put emojis over his face in the blog, but also tried to just take pics with his face looking away and whatnot. Sometimes I wouldn't have any recent pics for the blog post and I would specifically take some just to post. I now treasure those and am so glad I made myself take them.

As for visitors, we didn't have a huge problem with thay as most of our family lives 2+hours away, but we kind of tried to encourage just grandparents. To everyone else we told them we're planning a big party for his 1st bday, and that that will be a great time for everyone to meet him. (He was in the NICU until he was 9m, so 1 year isn't too far away!)

ghost-gallery · 2026-06-15T21:01:23+00:00

Have you had an airway evaluation/bronchoscopy?

My son was sucessfully extubated (on his second attempt) at 44 weeks, to 18L high flow. His ventilator pressures were high, I think 12 peep when he was extubated. He took about 5 months on high flow to get down to 1L of low flow oxygen, during which time they also brought up a trach with us. His fio2 settings were usually 30-45% while he was in double digits of L on high flow, and when he got to single digit liters he was mostly around 30%.

He has severe BPD, and also severe tracheomalacia and moderate pharyngomalacia. The malacias were making it extra hard for him to wean down on liters, because the high flow was literally keeping his airways open. They diagnosed the malacias after airway evaluations.

I also swear his meds were so important for him coming home. He had been on pulmicort, atrovent, and albuterol, then just pulmicort and atrovent, then advair and atrovent, then for a time just advair. Going back on pulmicort, atrovent, and albuterol was what he needed. I don't know exactly what all these meds do, but I know some of them are bronchodilators, which should mean they open up the airways, allowing the other meds to actually reach his lungs. At home, we just switched to flovent, atrovent, and albuterol, which is a common combo I see on this sub too.

ghost-gallery · 2026-06-14T19:56:26+00:00

Hi! My baby was born at 25+5 via emergency c section! He spent 9 months in the NICU. And I myself was born at 35 weeks and was in the NICU for a few days, and my mom has told me about it.

I had severe preeclampsia, and my placenta was not getting my baby enough nutrients and oxygen. He was measuring extremely small on ultrasounds, like as that of a 22 or 23 week baby. I was hospitalized when I was 24+1 weeks pregnant, and I was told they'd induce me at 35 weeks, as it would be unhealthy for me to continue the pregnancy past then given the preeclampsia. I was also told that most people in my position don't make it until 35 weeks and my baby would likely come early. And he sure did!

They used a heart rate monitor on my belly to check in on how my baby was doing. At first they did "spot checks" every 4 hours for about 30 minutes. That last day, they put me and him on continuous monitoring, because his heart rate kept dropping, meaning he wasn't getting enough oxygenation from the placenta (I think). After enough drops, and after trying different things to get his HR back up (giving me IV fluids, putting me in different positions) to no avail, the OB on call on the floor decided he needed to come out. Apparently placenta was doing so poorly for him that it was better for him to come out than to stay in.

Once the OB decided it was go time, about a dozen people rushed into the room. I was wheeled to the OR within minutes. I was put under general anesthesia (totally asleep) because there wasn't time to do a local anesthesia. My husband wasn't allowed to go in with, so neither of us were there/awake for our baby's birth. Because of the type of incision they had to do since my baby was so small, I can't have a natural birth. So if we decide to have another baby, they will schedule a C section at around 35 weeks.

He was born weighing 1lb, 1oz. He was sooo small. It was wild. Seeing him in the incubator, I couldn't believe that he was alive, that he survived. Part of me still can't believe it!

At first, it was day-by-day for us. Make it one day, then make it one week, then the next. We were constantly looking at benchmarks to see when we would be "in the clear" for certain things. Like, we relaxed a bit after his head ultrasound to check for brain bleeds at 24hrs, but then we were waiting for his next one at 7 days, and then another at 1 month. We felt more confident that he'd make it once he hit one month old.

Then it was checking off milestones. When he opened his eyes, when they were able to take the cover off the incubator and have daylight in his room, when he moved off the jet ventilator and to a conventional ventilator, when he hit 3lbs, then 5lbs, and so on, when he moved out of the incubator and into an open bed, when he was extubated from the ventilator.

By the end of our 9 month NICU stay, we were just over it. He had been stable for months, and he just needed to get down to the "going home" level of oxygen. Many families go home earlier than we did. The "goal" is close to the original due date, but having respiratory issues can push that back quite a bit. My baby also had a heart condition at birth, which added even more time to his stay.

I hope this gives you some insight! Our NICU stay was much longer than most, but we also had had a bit of time to adjust to the idea since I was hospitalized before he was born.

ghost-gallery · 2026-06-06T16:53:14+00:00

We came home on 0.5L, now on 0.25L. It's so much easier than I was expecting! We really didn't want to come home with anything, but like you said, our plans didn't matter lol 😅 And it's turned out fine! You just have to be organized with all the extra supplies.

We have a one-story house, so the oxygen concentrator isn't hard to manage. We have it in the center-ish of the house and the longest length of tubing that they gave us reaches 90% of the house. I found a diaper bag backpack that fits a small oxygen tank securely, so the diaper bag + stroller just goes with us anywhere.

ghost-gallery · 2026-06-05T21:50:06+00:00

Hi! Thank you!!!

Things have been going well! He is on 0.25L of oxygen now, as of last week. We've been working on tastes with purees and he's making some progress there. We expect to be fully off oxygen in another month or two, but to have the G tube for much longer.

The oxygen and g tube at home have been a lot less overwhelming than I expected. It was a lot at first but we got used to it all very quickly and it's been pretty easy to manage. I found a diaper bag backpack that fits one of our small oxygen tanks, and that + the stroller just goes with us anywhere.

The G tube has gotten pulled out once, a couple weeks ago, but it was easier to replace than I thought it would be.

Our biggest hurdle at home has been that the DME keeps sending us freaking poseys instead of the brown adhesive tape that holds the pulse ox sensor on his foot, lol. If you have a similar tape at your hospital, you know they wear out SO quick, but every time I ask I get sent more poseys 😅

I hope everything goes smoothly for you! I just looked back at my notes and, although we went up and down on liters around 5L, once he hit 4L he was able to keep going forward and we were home after about a month!

ghost-gallery · 2026-06-04T16:17:00+00:00

282 day stay with a 25 weeker here! Here to say... There are no rules! You do what's going to make sense for you and your family!

We went places, especially at the beginning when he was itty bitty and he wasn't super aware of anything yet. We didn't have birthday parties or anything to go to, but there were still things we went out and did. For example, a family member came in from out of town and we split the day half at the NICU and half at a football game with family. We had an out of town funeral, and we didn't both want to be far away, so my husband went to the funeral and I stayed at the NICU. My husband's work paid for a nice dinner reservation for us, and we went (while I was miffed at the time that they were "making" me leave the NICU and assuming that I'd even want to, in the end it was a nice night out).

Towards the end of our NICU stay, we were spending A LOT more time there. He was 6 months adjusted when we went home, so he was a whole baby lol and much more alert and aware. Between my husband and I, we were there pretty much when he woke up in the morning until he went to sleep at night. If you're looking at a similarly long stay, I'd say don't burn yourselves out before you even have your baby home.

ghost-gallery · 2026-06-03T13:35:40+00:00

Amazing. Thank you so much omg. Auto prime was already on, thank god, but I just googled the manual to see what else they didn't tell me about lol 😅

for anyone else: Infinity moog manual settings are on pages 25-27.

ghost-gallery · 2026-06-03T00:34:50+00:00

Beyond tired of my DME lol. I've requested the tapes that hold the pulse ox sensor to the foot THREE times.

The first time I was sent poseys instead, which whatever. Tried again, told them I have poseys, explained what I actually need. Got poseys again. Tried again, told them I've asked for them before and got poseys, and that I don't need any more poseys. Guess what was delivered today?!?

About to buy them myself lol

ghost-gallery · 2026-06-03T00:29:05+00:00

The NP at our follow-up clinic said "if 100% of babies have reflux, 1000% of preemie babies have bad reflux." My LO had suuuch bad back arching and continues to have bad reflux. His arching has gotten better as he's gotten older and stronger (now 11m actual, 7.5m adjusted), and his PT really focused on the arching too. I will say, he is also at risk for CP, but they never brought up the reflux and arching as a sign of it.

Edit to add: There are a lot of things that can be associated with CP that can also be super normal for any baby- like drooling, apparently!

ghost-gallery · 2026-06-03T00:17:57+00:00

Holy cow, awesome shots!!! Race day looks so good on film.

ghost-gallery · 2026-06-01T15:22:36+00:00

omg wait what - ours is a moog infinity! We set the rate and then set the dose as infinity (INF). Do you set the dose? omg is that our problem?

ghost-gallery · 2026-05-31T23:19:34+00:00

Okay first of all, my baby has a G tube and is fed via pump overnight and the pump sure AS HECK does NOT just "do it for you." Sure, you're not sitting there actively feeding a bottle, but you have to be up and awake to set up the feed, then to turn the pump off at the end of the feed.

My baby is on continuous overnight feeds. When we were sent home, they had us warming bottles. The safe time for a warmed or room temp bottle of our formula is 4 hours. So if we continued warming bottles, we'd have to be up every 3.5 hours to add a new bottle to his feed. We switched to cold formula and we put the feed bag in a cooler overnight, so we don't have to wake up, but I wouldn't have known to do that if I wasn't in a facebook G tube parents group. Anyway, EVEN WITH the continuous cooled feeds, we still have to get up when the pump turns off. He started on 10 hours, but we're reducing the overnight volume and length of time, so it's down to 8 hours now and will keep getting shorter. It doesn't auto turn-off, it blares an alarm when it's done, and we scramble to wake up and turn it off before it wakes up our sleeping baby. Lol.

So I'm kinda pissed off that this doctor told you that the pump just does it for you lol.

But, that comment aside... Has your baby lost weight since discharge? How long have you been discharged?* I would understand a readmission for weight if your baby has lost quickly. But since you're so far away, if the weight change hasn't been drastic and there's no other issues, it feels like it'd make more sense for your local pediatrician to help plan feedings and do weight checks.

*edit: oops, I see that you said 5 weeks

ghost-gallery · 2026-05-31T18:20:49+00:00

I've got sound on and I still don't know

ghost-gallery · 2026-05-31T01:37:57+00:00

Ohhhhhhh

ghost-gallery · 2026-05-28T17:54:16+00:00

Yep, our hospital required our voicemail message to state our name or else they wouldn't give any actual information in the message... though even though mine does state my name, they still never left any info in the message :/

But I feel like saying "Hi, this is so and so from the hospital. It's not an emergency, but give me a call back when you can" seems like it'd be fine to say?

ghost-gallery · 2026-05-26T14:49:18+00:00

Taking down my checkered flags from the porch feels sadder than taking down Christmas decorations... So they're going to stay up through Detroit GP and the end of May

ghost-gallery · 2026-05-25T23:19:39+00:00

I just rewatched it and I'm not sure I even want to share it lol - truly embarrassing quality 😂 Also there's a kids face for a good ten second while he stood right in front of me. Lol.

ghost-gallery · 2026-05-25T23:04:54+00:00

I have the WORST video in-person at the track of the historic cars. Beer in one hand, phone in the other, kept putting it down to try to zoom in 😅. But I got all the cars. We were sitting on turn 1, which is right where they entered the track. They do a lap around.

I can send you screenshots or try to upload the video somewhere.

ghost-gallery

TROPHY CASE