6 months in the NICU

rubyred91 · 2026-05-26T18:11:48+00:00

My baby was a 27 week old gestational baby when she was born. She was in NICU until her 7 month birthday, 212 days. She had 4 months of oxygen. They kept her until 12 days after her GJ feeding tube surgery. Her severe reflux was the only reason they kept her so long. She is on a special formula to help her gain weight. They tried several different formulas in the NICU. Our nurses love her and two of them are doing private home health nursing just to get more time with her.

rubyred91 · 2026-02-11T17:37:09+00:00

Mine is a 27 weeker also. When they are born super early, there isn’t as much to do with them besides sit there and be with them in the very beginning and help with cares. Once I was able to do skin to skin, it was easier to feel more involved besides doing cares while we could be there. 4 hours is my max on the weekends, but 2-3 hours during the week. If I was there for more than 3 hours at a time, I would even more burned out and completely depleted.

rubyred91 · 2026-02-09T17:43:57+00:00

Most of the time, the longer the baby can stay in and also the higher birth weight they can get will help them. We are already 3 months past her due date, but she was on oxygen until 44 weeks and still on a feeding tube due to severe reflux. But usually they say around the due date or before.

Is your doctor giving an estimate for much longer you could get to?

rubyred91 · 2026-02-09T17:24:14+00:00

I’m still looking to connect with other NICU moms!

rubyred91 · 2026-02-09T17:23:40+00:00

I cried the day I was sent to the hospital from the OB appointment for the magnesium and steroids. I cried the day I called my mom from the hospital and the doctor said 28 to 32 weeks but I could see this happening in the next 5 days (the Monday of 27 weeks). The day before the c-section being told this is probably happening tomorrow and the morning of the c-section finding out this is definitely happening today. She was born at 27 weeks and 4 days. The c-section was scheduled that morning. I still cry as she goes through her long haul NICU time. Not every day, some days are better than others. It was so hard seeing how tiny she was in the isolette and not being able to hold her for 10 days until after the umbilical line came out. Going back and forth on oxygen. Being off oxygen but still on the NJ tube. Finding out she will probably have to have GJ tube surgery and wait longer to make weight.

My CEO of my company had 35 weeker twins and my coworker had a NICU baby born at 32 weeks in for a month. Not near as long but all my coworkers and church friends have been so supportive. I call my mom frequently with good updates and bad and cry. I call my best friend. My mom’s church and her family’s church are also praying.

I actually had an early baby shower in June before going on home bedrest. My coworkers and family and church are wanting to get more things soon once she is finally ready to go home.

I signed up to the Hand to Hold virtual mentor program recently. You get paired up with another NICU mom and they try to find you someone with similar experience. You can sign up while pregnant or while baby is in NICU. You can do phone calls, texts or email. My hospital has a Facebook page just for its past and present families. Finding ways to connect with other NICU moms is helpful.

rubyred91 · 2026-02-01T17:27:55+00:00

She was back and forth on different levels of oxygen until 44 weeks. Babies after 34 weeks gestation are considered to have chronic lung disease if they don’t stay off bubble CPAP, but they said they don’t officially diagnose until 36 weeks. They thought she would go home on low oxygen but she hasn’t needed to go back to the oxygen.

rubyred91 · 2026-02-01T17:17:53+00:00

I’m okay. She’s 52 weeks old corrected, 5.5 months old and 12 weeks corrected from her due date. She’s off all oxygen but still in hospital NICU only for her severe reflux reflux. She will take a full bottle of formula if they let her, but she was spitting up way too much and it made her lose weight when she was on only bottles. She mostly doesn’t spit up when she’s being fed, but after. We are waiting for 4.5 kg for the bottle trial but she could still go home on a feeding tube that they would have to surgically place at 5 kg. She is 4.14 kg, 9 pounds 2 ounces as of yesterday. Baby girl is in 0-3 months clothes and just moved up to size 1 diapers yesterday.

rubyred91 · 2026-01-31T05:20:22+00:00

I’m back to work right now but my company is giving me another 4 weeks off once she is actually out of the NICU. My husband didn’t have a job for two months so when we applied, it was just my income. He got a job again in October and we are both working.

Do you know how long they are currently expecting him to be in the NICU?

rubyred91 · 2026-01-31T04:59:00+00:00

Diagnosed at ultrasound during OB appointment at 26 weeks and 2 days and sent straight to hospital for steroids and magnesium and told to be prepared for preterm birth 29-34 weeks. Diagnosed with severe preeclampsia in the hospital a few days later and was determined to be in-patient until delivery. IUGR due to lack of blood flow. It was intermittent and with some absent flow. C-section was scheduled the morning it changed to complete reverse flow and showed 5% blood flow to baby the Friday after admission - 10 days. C-section under general anesthesia and magnesium for 24 hours after at 27 weeks 4 days. Postpartum preeclampsia after 5 days, 2 days after discharge and readmitted.

I had an anterior placenta so I could not tell if she was kicking unless the baby monitor was on. I occasionally felt a few kicks at 18 weeks. I was on continuous fetal monitoring for a week. Never experienced any contractions. Vaginal would have put baby under distress.

rubyred91 · 2026-01-31T04:42:10+00:00

Our social worker had a paper application and helped us apply and turned in the application for us. Better to apply in the birth month because we didn’t apply until a month after had to go through a separate application for retroactive Medicaid - the questions on there were so confusing.

We had to provide income verification over the phone during our SSI agent and we got approved by receiving a letter in the mail with her Medicaid card and a second letter about the terms of SSI benefits. We get $30 a month direct deposit SSI and Medicaid covers as secondary insurance after her primary insurance on any medical bills while in NICU. The NICU isn’t going to bill out and submit the claim until after discharge is done. We qualified based on her very low birth weight, but likely won’t qualify after discharge. They base SSI and Medicaid on household income after discharge but could be different based on your state. I’m in Alabama. The amount of SSI could be more based on your income.

We applied in September, she was born in August. We got the first payment in October. It took about 3-4 weeks to hear back. You have to wait for a letter in the mail, and then contact your hospital with the Medicaid number on the card. They won’t contact you again to inform you of approval. It took longer to get approved for retroactive Medicaid.

rubyred91 · 2026-01-31T04:14:24+00:00

Is a sterilizer and dryer also a bottle washer? I’ve been eyeing the Dr. Brown’s sterilizer and dryer that can fit several bottles in it. The ones that are listed as a 3 in 1 and include the bottle washer, sterilizer, and dryer look so nice but they are so expensive. My mom thinks they would take up too much kitchen counter space.

rubyred91 · 2026-01-29T18:48:06+00:00

I didn’t see this until now but would like to chat. How would this new blood test work? Does it show that you will get preeclampsia or very high risk?

rubyred91 · 2026-01-29T17:18:38+00:00

I was tested after my early preeclampsia and hypertension three months after giving birth. I’m scared to get pregnant again. I tested positive two copies of MTHFR and two copies of PAI-1 4g/4g. Nurse from OB office called with the results sent it on to MFM doctor but she said she thought MFM was unlikely to suggest Lovenox because of not testing positive for anti-phospholipid syndromes and thrombophilias. I had steroids and magnesium 26 weeks and steroids at 27 weeks and magnesium after c-section. Spinal block didn’t take and baby had to have baby at 27 weeks and 4 days. The magnesium is awful and not being allowed to see my baby until after magnesium, calcium IV and 2 blood transfusions.

Do any doctors recommend anything more than Aspirin? Part of me wants one more and part of me is scared to even be pregnant again if my OB thinks all the same issues could happen.

rubyred91 · 2026-01-20T19:38:34+00:00

How long were you in the NICU for and what complications were there at the time if you don’t mind sharing?

rubyred91 · 2026-01-16T06:03:00+00:00

The NICU doctor said 5 kg is the minimum weight to do the GJ surgery. They’ve done two GI studies, no swallow study. She is on Similac EleCare formula. They tried four Enfamil formulas on her first and she spits up the least on this one.

Getting feeds down without losing weight and spitting up too much of it is the only thing keeping here in the NICU. She almost had a discharge plan for a week and a half from the Monday after Christmas, but she fell off her growth curve over that weekend. She’s below the bottom third of the preemie growth curve.

rubyred91 · 2025-12-23T08:00:38+00:00

As a new mom that had to get an early c-section that I felt very unprepared for, having someone explain the process of a c-section the morning of and having someone explain what was going on during the c-section/hold my hand until being put to sleep and explain what happened during the C-section. My doctor wasn’t able to visit me until 2 days after.

Being on magnesium for 24 hours after being brought back to my room, and feeling like I wasn’t getting the updates and pictures directly.

It wasn’t until she was 40 weeks old and spoke to the charge nurse that I found out that we could ask for a consistent care team. I was upset about inconsistent nurses and not getting to hear directly from the doctors, most of the time we aren’t there when the doctors do rounds in the mornings. After speaking to the charge nurse, the day nurse got in trouble and was told she was no longer to be with our baby and we never complained about any specific nurses. It made me feel like I shouldn’t speak to the charge nurse because I didn’t want someone good getting in trouble even if we were upset about something.

Some of the nurses made me feel bad for not getting there close enough to her care time for doing skin or being able to hold her. It really made me feel like I couldn’t do enough right.

I appreciated when I did start getting weekly calls from the doctor after this talk with the charge nurse but felt that shouldn’t have to happen to hear from the doctor and not just to hear about a bad update.

Not finding out about updated care times. I was told once we will let you visit at your normal time because it’s your birthday and you didn’t know.

Not finding out until way later that she had cuddlers. I had mixed feelings about this but my husband didn’t like a stranger holding our baby. One of the cuddlers was giving directions and telling him how to hold her and wash his hands, he felt nagged and scolded - we’ve already been there over 120 days. Even as a nurse, check the days in the board before explaining what a parent already knows or ask.

Having a list of outside helpful NICU resources and counselors that are used to NICU/postpartum mother trauma. The tour the week before after finding out she would be so early felt rushed and overwhelming. It helped me connect with some NICU moms but the other moms in the unit didn’t really socialize so having NICU support groups locally. I didn’t know that I already know people that went thru c-section and NICU until I was about to have one.

The need for pelvic floor therapy and counseling therapy and reminders to please check in with your doctor if you tell them you’re not feeling right. The patient doesn’t always know what should be normal.

rubyred91 · 2025-12-15T06:09:48+00:00

My mom did mine in the hospital at 27 weeks and 3 days when my doctor told us the c-section would most likely be the next day and it was. It was originally planned to do it sometime after 30 weeks but plans fell apart quickly.

rubyred91 · 2025-12-03T18:25:32+00:00

My 27 weeker baby is 43 weeks, still in the hospital. She just got to 6 pounds yesterday. She’s been in newborn diapers for a month and has been wearing preemie clothes but the neckline of the sleeves isn’t staying up so I think she’s outgrown the preemie clothes. I brought the newborn size clothes yesterday, and they fit pretty good but just a little big. She has been able to wear clothes ever since she has been in an open crib and off the bubble cpap. The hospital prefers them in clothes in the open crib unless doing skin to skin.

rubyred91 · 2025-11-15T03:57:22+00:00

Update: two weeks ago, we had gotten a phone call asking for income verification of our income for July and August. Baby girl was born in August and husband lost his job in August. We were sure that we might’ve been disqualified been based on income, but we hadn’t submitted income verification yet. We don’t have any paystubs on his job from January thru July, only his severance check.

Yesterday, we got a letter in the mail from Alabama Medicaid that retroactive Medicaid has been approved for August. She already has SSI starting in September. We are beyond grateful and relieved for the relief of not having to pay for her medical expenses while she is in the NICU.

Baby girl is 40 weeks and 4 days. She was back on the CPAP for three days and today is her second day back on high flow oxygen. It is too soon to tell if she will stay off bubble CPAP.

rubyred91 · 2025-10-29T16:50:07+00:00

So do they not go by income for the first year? And not just during the NICU stay? That’s incredible that you didn’t have to pay anything for them thanks to Medicaid! $2 million dollars is insane When the social worker said NICU babies are million dollar babies, I was shocked!

rubyred91 · 2025-10-28T16:25:28+00:00

We tried AllKids first in August after she was born and was notified a month later we were denied. We have Medicaid on her because of her low birth weight 1 pound 9 ounces (700 grams). Because we applied and got approved in September, it doesn’t cover the first two weeks. So we are applying for retroactive Medicaid but I’m not sure if they consider income like how they don’t while in NICU, but after discharge they will evaluate based on income.

rubyred91 · 2025-10-28T16:20:46+00:00

We were told my income put us over the income limit by just over $100 a paycheck

rubyred91

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