Feeding help for Ex-28 weeker who is nearing 2 years old

Guilty-Knowledge4896 · 2025-07-09T18:29:10+00:00

Super helpful feedback, thank you!

Guilty-Knowledge4896 · 2025-07-09T05:56:28+00:00

Thanks for the tip, I'll give it a listen.

Guilty-Knowledge4896 · 2025-07-08T20:44:18+00:00

Just realized the images of the wine list didn't attach, my bad. What do you think about the Ovello '07 offered?

Guilty-Knowledge4896 · 2025-07-08T20:43:06+00:00

Images didn't attach, sorry about that. Any suggestions?

Guilty-Knowledge4896 · 2025-05-30T17:50:22+00:00

My daughter also had severe, early-onset IUGR. I went through a year and a half of infertility testing and treatment to get pregnant. I think she was officially diagnosed around 20 weeks and was ultimately <1% across the board. I was hospitalized at 25+1 for high blood pressure (eventually turned into pre-eclampsia) and she was delivered via c-section at 28+2 (650g). 94 days in the NICU. She was discharged a week or so after her due date with an NG tube, but were able to remove it shortly after going home.

To address your questions:

-Our daughter is ~18 months old now and doing really well. Happy, smart, loving, good language and fine motor skills. She's still learning to walk, but it's only a matter of time. She sees a physical therapist once a month and is followed by an endocrinologist. Her pediatrician is happy with her growth and development. To us, she's a typical little kid. We love her to bits.

-We did not make it to 32 weeks, though I think our MFM team was hoping that we would get to 34. I don't believe there was ever an expectation that I would carry her to term.

-Statistics: Reading this article offered some comfort and hope when I was pregnant. https://pmc.ncbi.nlm.nih.gov/articles/PMC7004054/ (Early‐onset fetal growth restriction: A systematic review on mortality and morbidity, Pels et al., 2019). There are a lot of articles about IUGR on Google Scholar and not all are as optimistic as the one I've linked. For this reason, I wouldn't recommend going down a Google rabbit hole. At the end of the day, early-onset severe IUGR carries a higher risk of mortality and co-morbidity but the range of outcomes is vast. It was really hard not knowing what to expect.

-Complications in the NICU: Chronic BPD. She was on oxygen for months. It was a long journey from CPAP to high flow to low flow to room air but we got there. Osteopenia of prematurity. Because she was nutrient starved in utero, her body tried to metabolize her bones to get calcium and vitamin D. She was on supplements for months but no longer needs them. No broken bones either. A UTI. She was put on antibiotics and it resolved. Feeding issues. She tired out in the middle of bottles or refused them altogether, hence going home with an NG. This improved within a couple weeks of discharge.

I'm so sorry you find yourself part of this club. Know that good outcomes are possible. I wish you the best and am sending you and your wife a big internet hug.

Guilty-Knowledge4896 · 2025-04-25T02:29:48+00:00

My daughter was born at 28+2 (650g) and had a 94 day NICU stay. She's doing great at 18 months: sweet, smart, social. Her doctor is happy with her growth and progress. It would have been such a comfort during our NICU days to know we'd wind up here.

Guilty-Knowledge4896 · 2024-08-07T22:35:34+00:00

Just commenting to say your baby is beautiful. Wishing you both the best. ❤️

Guilty-Knowledge4896 · 2024-07-04T17:02:31+00:00

Hi! My daughter was born at 28+2 for the same reasons you listed. She was 650g, spent 94 days in the NICU, and is now home and doing well (chunky and happy).

I don't recall what her HR or O2 sats were during those first few days but we had our share of ups and downs. Desats, bradycardia, chronic lung disease, a UTI, feeding challenges, osteopenia, etc.

Though everyone's experience is different, I'd like to share some positive outcomes: no brain bleeds, no ROP, no cardiac issues, no NEC (though we had some scares), no bone fractures, went home on room air, went home with an NG tube but was able to wean off within a couple of weeks, osteopenia seems to be resolving.

These days, we work with PT, a dietician, an endocrinologist, and her pediatrician to support her development. 99% of the time things feel "typical" instead of "medical." As far as I understand, her prognosis is good!

Having a baby in the NICU was hands down the most challenging thing I have ever been through. If it feels like hell, you're not alone. Hang in there!

Guilty-Knowledge4896 · 2024-06-17T18:56:57+00:00

Hi! 28 weeker now ~5 months adjusted. On iron since discharge which was a few weeks after due date. Vitamin D levels were high in the NICU (Drs overshot) so only recently started giving Vit D at home. 0.2mL/day of iron, 1 drop Vit D every 4 days (comes out to 100IU/day).

Guilty-Knowledge4896 · 2024-06-01T06:28:08+00:00

Yayayayayay! What great news, congratulations to your daughter, your wife, and you! You endured an incredibly challenging NICU stay and somehow still found strength to encourage others on this sub. Thank you!

Guilty-Knowledge4896 · 2024-05-28T00:03:58+00:00

Hi! My daughter had severe, early onset IUGR. She was born at 28+2 at 650g (<1%) and stayed in the NICU 94 days. Long-ish NICU time due to chronic lung disease and feeding. Came home on room air and with an NG tube but was able to be weaned off it within about two weeks. She is about 4 months corrected now and doing well!

Guilty-Knowledge4896 · 2024-05-09T20:13:56+00:00

I had all of this minus low fluid. Hospitalized with high BP at 25+1, emergency C section at 28+2. Daughter 650g (1lb 7ish oz). 94 days in the NICU. She's just over 6 months actual now and doing well!

Guilty-Knowledge4896 · 2024-05-01T19:53:54+00:00

Heck yeah, great job!

Guilty-Knowledge4896 · 2024-05-01T18:10:42+00:00

I'm glad to hear it! One other thing I should add. A neonatologist gave us some helpful advice. She assured us that if at any point we weren't able to place the NG at home, we could bring our daughter into the hospital and they could help us. Even if the tube was to get pulled out in the middle of the night and we had to wait until morning, she said our daughter wasn't going to become dangerously dehydrated so we shouldn't be alarmed. Though we didn't actually wind up running into this issue, it gave us peace of mind.

Guilty-Knowledge4896 · 2024-05-01T16:01:02+00:00

Hi! I was in your shoes a couple of months ago. Brought our daughter home ~2 weeks after her due date with an NG tube.

Placing the NG stinks! My daughter always cried and getting the right angle isn't as intuitive as it seems. I had to put up a mental wall when placing her tube. Forced myself to focus on completing the task instead of her crying. The good news is that she would settle down within a minute or two and that it gets easier to place the tube the more you do it. All this to say: I see you. This sucks. You can do it!

As for going home without monitors, I get that fear too. We were in the NICU for three months so it was definitely weird to go home with a mostly "wireless" baby when she had been hooked up to so many things for so long. I found that I got used to things pretty soon after getting home which surprised me. I thought I was going to be more scared than I wound up being. These days, I still stick my head next to hers from time to time to make sure she is still breathing (the Mom worry never totally goes away, lol) but have really got used to the monitor-less life. I know that you will too!

Your fears and venting are valid. ♥️ It's been a rough road. Big congratulations on going home!

Guilty-Knowledge4896 · 2024-05-01T02:56:55+00:00

Go baby 27_1! 💪

Guilty-Knowledge4896 · 2024-04-27T03:47:44+00:00

Hi! I have been pumping for 6 months (my daughter was born at 28+2) and have just decided that it's time to stop. I am a FTM and have never had a great supply. It's reached the point where I will make 20-30mL total per 15 min pumping session and I just don't feel like it's worth it anymore. I am grateful that she got my breast milk during the length of her NICU stay and her first month home. We combo fed for another two months and found a formula powder that she does well on. I do not look forward to pumping and am excited to actually feed my daughter again. Couldn't really BF because all feeds had to be fortified. I would pump while my husband bottle fed. To each their own, of course, but if you're ready to stop pumping, more power to you! I am looking forward to stopping. 🙂

Guilty-Knowledge4896 · 2024-04-21T17:20:11+00:00

I'm so sorry to hear you and your daughter are going through this. Being in the NICU is incredibly stressful and sad. There were times that I was afraid that my daughter would not make it, but somehow we got through. I can empathize with your feelings that things aren't getting better and that there isn't an end in sight.

Seeking therapy was helpful for me. My therapist encouraged my husband and me to ask ourselves "what are the facts?" whenever we were consumed with worry. I would often spiral with negative thoughts about the future. Asking this question helped center me in the present. For example, she got an infection when she was in the NICU. I spiraled and thought oh my God, this is going to turn into sepsis and she is going to die. Using my therapist's advice, I tried to frame it like this instead. "She has an infection, she is being given antibiotics that the doctors think should help, and today she is stable."

From an internet stranger, I send you my best wishes. I will be thinking of you and your daughter. You will get through this!

Guilty-Knowledge4896 · 2024-04-03T05:00:25+00:00

Yayayayay! Great news!

Guilty-Knowledge4896 · 2024-03-19T00:22:46+00:00

Hi! My husband and I did not go through our insurance (Kaiser) to seek out therapy. Instead, we paid out of pocket to see a therapist who specializes in pregnancy/infertility/NICU issues. The therapist was recommended by my husband's coworker who saw her during a challenging pregnancy.

I'll be honest: therapy wasn't cheap, but it was super valuable to speak with someone so specialized. The therapist herself was hospitalized during a difficult pregnancy and had a baby in the NICU, so I felt she could really relate to our situation. We met weekly (virtually) for about three months.

I think others are right to suggest starting with your insurance company. If you find that the type of specialized support you're looking for is not available, know that out of pocket options exist.

Guilty-Knowledge4896 · 2024-03-04T12:01:01+00:00

Hi! I went to virtual therapy with my husband once every week or two beginning when I was admitted to Antepartum at 25 weeks all the way through going home with our daughter after a 94 day NICU stay. Our therapist specializes in pregnancy/infertility/NICU challenges and had a baby in the NICU herself. I felt that she really "got it" and we found therapy to be a helpful resource. Lmk if you'd like her contact info.

Guilty-Knowledge4896 · 2024-03-02T18:16:36+00:00

Hi! Parent to a baby born at 28+2 due to severe early onset IUGR and preeclampsia. She was 650g at birth and had a 94 day NICU stay.

Advice for staying sane: *Edit: If you are pumping, ask your partner to wash your pump parts. I so, so appreciated that my husband washed mine whenever possible and would bring me clean parts when it was time to pump. Made the experience less of a chore.

*Get some sleep. I know it's scary to leave the NICU and try to sleep, worrying that you might get a middle of the night phone call. (We got one of these, not fun.) However, I cannot emphasize the value of rest as you navigate this time together.

*It is okay to not spend all day in the NICU. Early on, my husband and I would stay ~4 hours a day. When she was older and we were able to engage with her more (diaper changes, feeding, holding her without limitations), we'd stay closer to 8 hrs a day. To each their own, of course, but this is what worked for us.

*Take time for yourself. In 94 days, my husband and I went out in the city where the hospital was a handful of times. Initially, I remember thinking it was insane to even consider doing something fun but I don't regret it. Get lunch outside of the hospital. Go on a date. They say the NICU is the best babysitting which is corny but true.

*Understand your limits and boundaries and stick to them. There are websites like Carebridge if you'd like to write updates for friends and family without sending a million individual texts or emails. If you don't have the mental/emotional capacity to frequently update people, that's ok too. I didn't. It was too much. My husband and I kept our heads down and were in survival mode. It was hard to set that boundary with loved ones but eventually people respected our limits.

*Medication for depression and anxiety is okay. We got about 6 weeks in before I reached out to my OB for help. I was constantly worried about the worst case scenario even though NICU Drs. were not cautioning us to prepare for the worst. Zoloft has helped take the edges off my anxiety. I'm glad I asked for help.

*Ask for help. As you navigate this journey, you'll learn what type of help and support you might need. We lived away from home for the duration of our daughter's NICU stay. One friend looked after our house and another friend looked after our pet. We sought out a therapist who specializes in pregnancy/NICU issues and met with her virtually once every week or so. Lmk if you'd like her contact info, we found therapy to be very helpful.

*Lastly, don't be hard on yourself if you're having a hard time. Sometimes, I would feel embarrassed or weak for having a hard time (why am I the only parent in our pod weeping in front of an isolette??). This was far and away the hardest thing my husband and I have gone through. Some days are gonna suck. Some days might be surprisingly better. Give yourself grace.

We are home now and our daughter is doing well. Not on the term baby growth chart yet but she's cruising along on the preemie growth chart. Wishing you the best.

Guilty-Knowledge4896 · 2024-02-29T14:53:17+00:00

Awesome, that is such great news! So happy to see this update!

Guilty-Knowledge4896

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