u/rival_moonlight

I'm so sick of sitting around in hospital rooms not knowing if the doctors will even have answers this time.

After 85 days in the NICU, my ex 27weeker came home, and I thought all the medical shit was behind us.

After dropping from 65% down to 10% in weight in 2 months, we were readmitted for a few days, then discharged with a GERD diagnosis, new meds, and an NG tube. In the 2 weeks she had the tube in, I had to replace it FIVE separate times, 3 of those all in the same day while my wife was at work and I was home alone with both our baby and 4 year old. Placing an NG is hard enough with another adult there to help hold and distract the baby. By yourself, while your baby is crying, and you're crying, and your other kid is sitting in the corner of the room with wide eyes, looking absolutely traumatized. That was horrible.

On top of all that, at our next weight check, we found that she'd only been averaging 6g a day since getting the tube placed, whereas before she'd been closer to 15g a day.

So the dietitian had us pull the tube and switch fortifiers for what seemed like the hundredth time and start using an SNS. Her violent vomiting stopped almost overnight, going from 3-6 times a day to less then once day. And in the following week, her weight gain jumped up to 22g a day, only 1 gram short of what they'd consider ideal for her age. And for a brief 4 days, I felt like I could finally just be her parent, not worry every hour how her next feed would go or if she'd actually gain weight that day.

Then this past Saturday, she threw up while laying on her playmat. I went over to clean her up and her eyes were wide, her mouth still open, looking like she was gagging, but not making a sound. Her face started to turn red, so I picked her up, and she started coughing up thick mucous, then started crying, a much better sound then the silence a few seconds earlier. There was no labored breathing, no lingering cough, and she was back to her usual smiley self within 10 minutes.

The same thing happened on Sunday morning. Sunday night, while changing her diaper, it happened again, but this time, even after I'd picked her up, she still wasn't able to cough it up and her face had turned purple, so I flipped her over to gave her two harsh back blows before she threw up more and started screaming. Me and my wife debated taking her in that night, but again, she seemed totally fine within 10 minutes, so we agreed that if it happened again, we'd take her in then.

Monday was uneventful. Tuesday, it happened again where I had to give back blows before she started breathing/crying again. My wife was at work with the car, so I called the pediatrician and they said to call 911 if it happened again, but since she was still recovering quickly after these events, they felt I could wait to come in for an appointment that evening when I'd have a car to get there.

At that appointment, they suggested scheduling a swallow study and possibly getting in with an ENT depending on the results.

Tuesday night through Wednesday afternoon, we had no issues. But an hour after her 5 o'clock feed on Wednesday, she was getting fussy on her playmat, and I went and picked her up. She threw up all over me, soaking through my clothes and underwear and making a puddle on the floor. Her face started to change color, I turned her over, gave back blows, she started crying. As soon as I turned her back over, she started choking again. This repeated twice, and my wife had her phone out to call 911 before baby girl started and continued to cry as I held her on her side.

The immediate danger gone, we got her in the car and drove her to the ER. They did an x-ray of her lungs to make sure she hadn't aspirated a large amount, then an x-ray and ultrasound of her belly to rule out pyloric stenosis or any other blockages. All came back clear, but they decided to admit us overnight for observation and wait till the speech therapist was in the next day to do a swallow study.

So here I am, sitting beside a hospital crib once again, waiting for answers that may or may not come.

I feel lucky that so far anytime she's choked, I've been right there. But I know it will only take one time of me not being there (or being fast asleep) for it to be catastrophic.

She hasn't had any events while we've been here, and they've said that after the swallow study, they'll probably send us home tonight. And I'm worried sick. I ordered an owlet for same day delivery because I just cannot handle something potentially happening while I'm showering or napping or some shit.

I'm so frustrated and scared and feel all around awful, especially because I know my 4 year old already is feeling a bit side-lined not being the baby anymore, and with all these doctors visits and health scares, it's so hard to make time for him. And luckily my parents live with us and he loves hanging out with them both, but they also work, so most of the day it's just me him and his baby sister. And I miss taking him to the park and pool and cuddling and reading books at night.

I was SO excited to be a family of 4, but everything since the start of my pregnancy has been one nightmare after another and I have no clue when I'm actually going to be able to enjoy being a parent again.

For context, I have a good supply, and my baby has a great latch and is able to transfer plenty of milk when nursing.

The reason I am using an SNS (supplemental nursing system) is so my LO can get fortified milk. She's no good with a bottle, so our speech therapist, LC, and dietitian said an SNS might be a solution. They want her to take about an ounce of fortified milk from the SNS at each feed in addition to whatever she's getting from me directly.

I've only been using the SNS for a day, and most of the time LO only takes 5-10ml from it (Twice she's taken 18ml). I feel like I must be doing something wrong, but I've read and reread the pamphlet and watched a dozen different videos and am just at a loss as to what I'm missing.

I'm currently using the Medela starter SNS because that's what the dietitian had for me to try before I spend money on a different one.

My LO has had quite the long road when it comes to feeding. She was born 27w4d, so was getting all her feeds through TPN/NG tube for a full 7½ weeks before breastfeeding or bottles were introduced.

She took to breastfeeding quickly, but was very slow when it came to bottles.

She was finally discharged after 12 weeks in the NICU, but bottles were still hard for her, often taking her 30+ minutes to finish, and many bottles were going unfinished. We eventually switched to pigeon ss nipples, and she started finishing bottles in 10-15 min, and actually seemed excited to take them. But only a week later, she got thrush, and all that progress vanished. Over the following weeks, she took less and less from her bottles. She was throwing up A LOT, and clearly uncomfortable after bottle feeds. The pediatrician eventually recommended switching to nutramigen, thinking it might be an allergy/sensitivity. She did okay on it for a few days, then seemed to get worse again. I was patient, and if she got stressed or upset with the bottle, I'd stop and either breastfeed her or wait a bit and re-offer it when she calmed down.

It got to the point where she stopped taking bottles altogether. Because she's supposed to get fortified feeds, this was a big deal. She'd already completely fallen off her growth curve and was only gaining about a third of what she was supposed to day to day and week to week.

Last week, we took her to the er and ended up being admitted for a few days. They diagnosed her with severe GERD and prescribed lansoprazole, and sent her home with an NG tube and follow up appointments with speech/feeding therapy. We had our first appointment with them yesterday, and she took a full bottle + extra from the therapist, which was the first bottle she'd taken any of in a whole week. The therapist doesn't think there's anything wrong anatomically. Her suck swallow was a little discoordinated, but nothing more than she'd expect from a baby with her adjusted age.

My wife tried giving her a bottle last night, which she took none of. As of this morning, she took half an ounce from me for her first feed, and an ounce for her second, which is better than nothing, but is stressing me out. We're feeding her the exact same way they taught us in the NICU, and how the speech therapist did. We're doing it all technically right, she just won't take it.

Anything she doesn't take from her bottle, we have to put through her tube, which is nice because I at least know she's getting the calories she needs now, but I'm terrified she'll never get a full hang of bottles and will be stuck with a tube till she can start solids, and possibly longer.

It seems like most of the advice I've seen for bottle aversion online includes letting your kiddo only drink from the bottle and nothing else. But that just isn't an option for us since her gaining weight is of utmost importance.

I'm not looking for advice, I trust the therapists and doctors will help us through all the technical stuff. I guess I'm just wanting to hear from others whose babies have ended up with NG tubes, but we're able to take bottles down the line. Right now, I just can't see the end of this.

After 2 months home, my LO was readmitted a few days ago, but thankfully we've been discharged today. She's come home with an NG tube this time, and we've already had all the necessary medical supplies for it delivered.

But for those who have had or currently have kiddos with NG tubes at home, is there anything you'd recommend just for quality of life purposes? We've got a really tight budget, so ideally things that can give us a big bang for our buck. (Though I can definitely shuffle some things around in the budget if there's a more expensive item that makes a large difference.)

I'm specifically curious about a better way to deal with the pump. They gave us an IV pole, but we live in a 3-story house, so I don't see that being very practical.

My baby girl was born at 27+4 and spent 85 days in the NICU, coming home just 2 days before her due date. In the 2 months she's been home, she's dropped from 65% to 10% for weight. It started with projectile vomiting all of her bottles, so they tried lowering her fortifier from 26 to 24, which helped the vomiting, and she started gaining weight better. She really struggled to get anything out of her bottles though, and it took the full half hour every time and she wouldn't even finish them 9 times out of 10. We eventually switched to pigeon super slow flow nipples and it was like night and day. She was finishing bottles in 10-15 minutes, slowly increasing volumes, and starting to have some catch up weight.

Then she got thrush and a stomach-bug and lost half a pound. Once those cleared, her weight started trending up again, but slowly. Then she started throwing up bottles again, and even if she didn't throw up, she'd scream and arch her back and be all around miserable after every feed. Just last week, the doctor recommended switching to nutramigen, so we did a few days of half and half to transition her over, and it seemed like the vomiting was over, and at the very least she wasn't screaming anymore. But she started throwing up again Friday-Saturday, and started barely taking an ounce or two at a time.

Now this morning, she took half a bottle, but then refused every single bottle after that. We ended up bringing her to the ER because by the time my wife was home with the car, the pediatrician was already closed. They ran labs, which all came back normal, and her vitals are fine. And at the moment, she's not dehydrated.

But now they're saying they want to readmit her, and I feel like I've completely failed my baby.

My LO (7 weeks corrected, 4 months actual) has suspected CMPA. She's combo-fed and handles my breast milk fine (I've been dairy free for years), but she almost always throws up her bottles with formula, and developed a bad rash all over her torso and face. Our pediatrician recommended switching to nutramigen, so we've been using that for a few days. Her rash is almost completely gone, only a little left on her forehead! But she seems to be throwing up even more now (though she doesn't seem like she's in as much pain as before).

I hate seeing her like this and just want to be able to enjoy her without spending every waking hour stressing about her next feed and if she's getting enough nutrients or not since she's already dropped 2 percentile lines since coming home. For others who have dealt with this, how long was it before your LO's symptoms improved?

My LO (7 weeks corrected, 4 months actual) has suspected CMPA. She's combo-fed and handles my breast milk fine (I've been dairy free for years), but she almost always throws up her bottles with formula, and developed a bad rash all over her torso and face. Our pediatrician recommended switching to nutramigen, so we've been using that for a few days. Her rash is almost completely gone, only a little left on her forehead! But she seems to be throwing up even more now (though she doesn't seem like she's in as much pain as before).

I hate seeing her like this and just want to be able to enjoy her without spending every waking hour stressing about her next feed and if she's getting enough nutrients or not since she's already dropped 2 percentile lines since coming home. For others who have dealt with this, how long was it before your LO's symptoms improved?

My girl was born at 27+4, and spent a total of 85 days in the NICU. All things considered, her NICU journey was pretty smooth. She was completely off oxygen/breathing support by 2 months, and the main thing that took the longest was learning how to take bottles (she breastfed just fine, but because she needs fortifier, she needs to take at least some of her feeds by bottle).

While in the NICU, she was on 22kcal and gaining weight exactly on target. They bumped it up to 26kcal the day before she came home since she'd be getting less bottles.

A few days after discharge, she started to violently throw up every bottle we gave her, and at our first peds appointment, she'd lost weight, so they had us come back a week later, and she'd only gained half as much as they wanted. I brought up the vomiting, and they said I could try cutting out the bottles altogether.

I ended up buying a baby scale to do weighted feeds at home, and she's definitely getting enough volume, but another week later, we went back to the pediatrician, and again, she'd only gained about half as much as she was supposed to.

So now the doctor told us to try switching to mostly bottle feeds at 24kcal to see how she handles that. It's only been a few days, and from weighing her at home, she's still not gaining enough weight (though it is slightly more than she had been, about 20g a day instead of 15g....)

I wanted so badly to exclusively breastfeed this kid, I couldn't with my first kid because he had a really bad tongue tie that wasn't caught till he was 4 months old and most of my milk had dried up by then.

On top of that, baby girl has started rejecting most of her bottles. She only ends up drinking like a quarter of it if we're lucky. But she's clearly still hungry, and most times I just end up breast feeding her so she's getting SOMETHING.

I asked the pediatrician if we could try a different formula, but he seemed oddly reluctant to that?

We've already tried different nipples and bottles, and we found one that she takes slightly better, but it's still not enough.

I've been looking into freeze-drying my milk to use as a fortifier, but I know it's not regulated by the FDA or anything like that, and because she was premature, I don't want to risk anything.

I'm just so frustrated. I know it's nothing I'm doing wrong, and that this doesn't mean my milk isn't good enough, I just want my girl to be able to grow and be healthy, and when she won't take formula, how is that supposed to happen??

I thought once she was out of the NICU things would be easy (as easy as they can be with a newborn anyway 😅) but I'm spending so much of my day stressing about her weight and prepping fortified bottles that I know will mostly go to waste.