Tell me your stories of your 28-30 weekers

kimhimmel

New member
After 21 days of hospitalization with pre-eclampsia (about which many of you shared your own journeys), our little dragon was born at 29 weeks exactly.

If you had a little one born between 28 and 30ish weeks, I’d love to hear the story of their NICU stays. Would be great to hear:
  1. Their birth weight and gestational age, and single or multiple
  2. The reason and circumstance of their premature birth (e.g. planned delivery versus emergency, pre-e, PPROM, etc.), including if the birth parent was able to receive steroid shots/magnesium drip in advance or not
  3. Their progression with breathing support over time
  4. Their progression with feeding over time
  5. Any major setbacks or complications, when those happened, and how they were resolved
  6. How many days until discharge and what their criteria for coming home were
  7. Any ongoing issues since coming home related to their prematurity, and how you’ve been managing those
  8. Anything else you’d like to share!
Thanks in advance for sharing your stories, I look forward to hearing about your little fighters 💪💪💪

(Hopefully this thread can serve as a resource for others in a similar position to find in the future)
 
@kimhimmel
  1. 2 lbs 12 oz (dropped to 2lb 6 oz after birth). born at 28 +4; single pregnancy
  2. spontaneous labor, I received one steroid shot before c section (breach)
  3. baby girl was on a CPAP until 32-33 ish weeks. She trialed coming off around 31 and made it to 24 hours free but then had to go back on and trialed on and off again until her stats were high enough on room air. she also received a surfactant dose somewhere around 24-48 hours after birth
  4. Feeding started off slow as she was still so tired and sleepy - had our ups and downs as she would do really good on the bottle for a few feeds but then tire out and be tube fed for subsequent feeds
  5. No major setbacks, had a NEC scare but turned out to be just an anal fissure. She also had trouble maintaining her body temp throughout her stay
  6. Stayed 68 days in the NICU and came home at I think 38+1 gestational age. She had to maintain a certain % of feeds by bottle to come home, pass a car seat test and maintain her weight
  7. Shes now 9.5 months actual almost 7 months adjusted and weighs a whopping 19lbs. Shes a big, happy, smiley baby girl. To look at her now you would never think she was a preemie
Hang in there! I am hopeful that one day you will be able to update this post with your own graduation story!
 
@sarah5 How long did it take her to outgrow the tiredness from feeding? That’s where we are right now and it seems like she’ll never have the energy to eat so we can go home
 
@sarah5 similar story, both twins. they're almost 9 months adjusted now and the big guy weighs almost 30 lbs 👀 nobody has any idea they were so tiny
 
@kimhimmel Edit: Thanks for the nudge!
  1. My daughter (singleton) was born 29+5 at 955g
  2. I was admitted to labor and delivery after a routine NST at 29+2 with suspected gestational hypertension. Within an hour, my blood pressure was stroke-risk level. I had severe, sudden preeclampsia. I was put on a magnesium drip and was able to get the 2 steroid shots. At 29+4, the doctors were hopeful I could hold out until 34 weeks. The next morning, my preeclampsia devolved into HELLP syndrome - this was at about 8:30 in the morning. At 11:49am, my daughter was born. She came out screaming. I was told not to expect her to breathe on her own, but she was at least at that point.
  3. BREATHING SUPPORT PROGRESSION: She started out on a conventional ventilator, then 36 hours after birth, everything went to shit. She had a code event and her heart stopped 3 times. She was brought back and then put on an oscillating ventilator. Thankfully, despite her code event, she had no ill effects on her heart, no brain bleeds. Once they figured out she had an infection and was put on a large spectrum of antibiotics and healed from that, her lungs were her only thing she needed to work on. She was on the oscillating vent for 5.5 weeks - they switched her to the conventional ventilator once, but she couldn't tolerate it for more than 8 hours. When she was back on the oscillator, her oxygen needs steadily increased and we were in the unit a couple times where they needed to bag her and help her breathe again. It was very very scary, but a part of me always KNEW she was coming home, or refused to think of the alternative, so I held it together okay. The doctors were worried about her ability to heal and grow her lungs, so they gave her a round of DART steroids. About halfway through the DART protocol, they put her on the conventional ventilator. And I was FINALLY able to hold her after 5.5 weeks. Then, 3 days later, she was extubated and put on NIPPV. It was so wonderful to hear her voice again. She stalled on NIPPV for 4 weeks. They trialed her on CPAP a couple times and each time she was only able to stay on it for 4 hours at most. We made the difficult decision to try another round of steroids. And the weekend before her course would begin, we asked to trial her on CPAP one more time. Intuition was telling me that something had changed and... it did! She moved to CPAP and it stuck. And then we were cooking with gas. She moved off CPAP after about 1.5-2 weeks, onto high flow, and then when it was clear her cannula was bothering her and she kept pulling it off without desatting, we asked to try low flow (after another about 1.5-2 weeks) and that worked. She stayed on low flow for a little longer than she needed, until about a week before discharge (so another 1.5-2 weeks), so she could have a little extra support after she worked on feeding. At the beginning, doctors told us she'd 99% need to come home on oxygen, but when she was discharged, it was on no oxygen or medications, just an order to fortify her formula to 27 calories.
  4. FEEDING PROGRESSION: She was pretty old when she started feeding - about 41 weeks - plus she loved her pacifier, so she had the suck, swallow, breathe reflex down by the time she started eating. She needed ultra low flow nipples, but mostly needed time to build up stamina. They started her off at a 1 ounce cap on 1 bottle per day, then took off the cap, did 1 bottle per shift, and slowly upped the number of bottles she was allowed to take until she could drink all on her own. It took about 4 weeks for her to build up the stamina and get discharged.
  5. SETBACKS: All the setbacks we had were with breathing and the code event (I mentioned in number 3). It was also frustrating feeling like there was no progress at the beginning and there was no light at the end of the tunnel. Some days, my husband and I would come home and just hold each other and tell each other: "She's going to come home." Now I'm listening to him read her A DAY IN THE LIFE OF MARLON BUNDO as she's falling asleep.
  6. All in, she spent 106 days in the NICU. She had to be able to meet a shift minimum of mLs of formula drunk (her minimum was 480 mLs for the day, so 240 per shift, which averages to 60 mLs per bottle, but she could take 40 one bottle and 80 another and 70 for the other 2 and be fine). They also had to be confident she could hold her body temperature (not a problem considering her age), no Bradys or events where she needed resuscitation, be able to sleep on a flat bed, and have her supplemental oxygen needs minimal (where she could come home on oxygen) or nonexistent.
  7. She has reflux and is very small (at 8 months actual, 5 months adjusted, her 3 month clothes are still big on her), but developmentally, she's hitting her milestones and is growing on a curve (she's off the chart, but her growth trajectory lines up with what it should be), but no other issues with prematurity.
Hope this helps!
 
@kimhimmel My twins were born at 29+3 due to PPROM. My cervix started shortening at 25 weeks. I managed to get two doses of steroids before my water broke at 29 weeks and my labour came on with a vengeance despite meds to try and stall it. They were born at 2lbs 10 and 2lbs 11oz.

For the most part, they were feeders and growers. We started on CPAP. My daughter progressed pretty smoothly with breathing support. She went on high flow after about 4 weeks, then right to low Flo a few days after that. I think she was off breathing support entirely after about 5 weeks.

My son had a tougher time with breathing. He had a very mild pulmonary hemorrhage which needed emergency intubation a week or so after he was born. He made a full recovery, pulled his own tube out after a week on a ventilator and they kept him on CPAP with a PIP (I forget the correct term, but the kind that sends a gust of air at regular intervals). He weaned off that and went to high flow after about 6 weeks, then low flow with some O2 pretty quick after that. I think he came off breathing support after about 8 or 9 weeks.

They started cueing for feeds around 34 weeks. Feeding went quite smoothly for our son, who was doing full feeds by 36ish weeks. He had a Brady right before he was about to discharge and that reset his discharge date by 8 days, but he came home at 37 weeks.

We hit a feeding wall with my daughter. She’s been off monitors since maybe 35 weeks, but really struggled to hit her volume targets with feeds and started to develop a feeding aversion. We decided to get trained on NG feeds and insertion, and she came home 10 days after her brother at 39 weeks (5 days before their due date) with an NG because feeds were the only thing keeping her at the hospital.

I can’t recommend reading Rowena Bennett’s book your baby’s bottle feeding aversion enough! It totally helped us with our daughters feeding issues once we got home, and we wound up doing a tube weaning program through her consulting service after 4 months of her being on the NG at home - she was so ready for bottles, but she needed a push to get off the tube because she wasn’t getting hungry between tube feeds. Once we tube weaned, we never looked back and now she’s 2.5 years old and eats a gobsmacking amount of food 😜.

A couple of minor things that popped up for us: our son had a PDA that closed on its own after a couple of weeks, and our daughter had a grade 1 brain bleed. Neither caused any lasting complications.

We did 70 days in the NICU overall, but our twins were home for their first Christmas (which was their due date!) they are still followed by early intervention and a perinatal follow-up program at the children’s hospital, but we haven’t seen any delays. They’re wicked smart, energetic silly little toddlers now.

I wish you so much luck and as smooth a ride as possible. It’s a long journey, but hearing success stories and seeing before/after photos helped me a lot.

first few days

first few days

right after discharge

today
 
@trusaders Thanks for sharing this and the photos as well, and the recommendations. So glad this chapter is behind your family and thanks for sharing this experience for the rest of us.
 
@kimhimmel Twins born at 29+1. Both under 2lb. Mum had shortened cervix and we were lucky to get that far. Both able to breathe on their own and didn't require O2. Both struggled mightily with feeding - initially they were having just a few oz. of milk every hour! Son got better on feeding but daughter continued to struggle for many months, and with her it was a long time of tiny feeds, but frequently. NICU stay was 59 days across two hospitals. Nothing but wonderful things to say about the medical care and treatment we received. Had to go back to the hospital a couple times for feeding-related issues for our daughter. It was definitely hard, for different reasons, through the different stages. The transition home was especially scary, after high-level inpatient care, to suddenly being on our own. But now flash forward to the three-year mark and we have two happy healthy appropriately-developed generally-full-sized kids, and the struggles have just become "normal" parenting things. It'll be hard, but it's not forever. I promise you can do it!
 
@kimhimmel 1) 3lb 15oz 31 weeks single
2) pre-e with severe features, I got 2 steroids shots and had a mag drip
3) intubated and extubated within first 24 hours, then was on and off the cpap 3 times. He came off the last time at 35+6. He was good on room air after that
4) feeding was his big hang-up our NICU didn’t allow bottle feeding with the cpap so he’d work a few days on feeding then go back on the cpap. He ended up coming home on an NG tube but it was only in for 8 days.
5) nothing super major but he did have some bloody stools due to some things in my diet and required 2 blood transfusions.
6) 75 day (42 weeks). Need to be over 4lbs, take 80% of his feeds by mouth for 2 days and continue to gain weight without the feeding tube.
7) No on going issues as of now, we’ve been home for a month.
8) Don’t be afraid to admit when you’re overwhelmed, lean on your partner and others who offer help. And as hard as it maybe take at least 1 day for yourself. I didn’t take a single day off and I was so dang burned out at the end.
 
@kimhimmel Hi! Just wanted to say be strong and do not rush your LO.

1.) 3lb 4oz and he was born at 31.4
2.) he came early due to pre-e. I was able to get steroids prior to delivery and I was on mag drip after delivery. Mag is horrible. The actual delivery I had no pain or discomfort it was just the mag that was horrible.
3.) he was in cpap for two days and remained on high flow after that til about 10-15 days before discharge.
4.) feeding was the hardest part for him. He would be so sleepy when it came to eat from the bottle. Id recommend being there as much as possible to feed them because I noticed some nurses weren’t patient enough with him to wake him up and wait for him to finish bottles. When I was there he would finish them because I’d wake him up often.
5.) feeding was the only set back
6.) he came home after 41 days in the nicu. He had to gain weight consecutively for two days and finish 75% of bottles for him to come home. Also pass a car seat test.

You got this. Don’t rush them. Have faith and I know easier said than done but remember they are in the best place they can be right now.
 
@kimhimmel Their birth weight and gestational age, and single or multiple

29+5; 1525 g; singleton (boy)

The reason and circumstance of their premature birth (e.g. planned delivery versus emergency, pre-e, PPROM, etc.), including if the birth parent was able to receive steroid shots/magnesium drip in advance or not

I had a severe bleed from placenta praevia (placenta near or over the cervix). My son was born 2.5 hours after the start of the bleeding, by emergency C section. It was unplanned and unexpected. I knew I had placenta praevia but the expectation was that it would resolve later in pregnancy. My only other bleeding event was at 12 weeks so it seemed likely that my placenta would behave itself. That unfortunately wasn’t meant to be! I never expected this to happen. Due to the quickness it everything we didn’t receive steroids or magnesium.

Their progression with breathing support over time

He started on CPAP setting 8 and over the course of about 45 days was able to wean to low flow setting 1 or 2. I think at breathing support was stopped at about 37 weeks.

Their progression with feeding over time

He was able to start feeding orally at 34 weeks or so and immediately did well with bottles as well as breastfeeding. At 37+5 he lost his ng tube and the day after he went home all on oral feeds. Two weeks later we were able to ditch the bottles and breastfeed exclusively which we are still doing 9 months later.

Any major setbacks or complications, when those happened, and how they were resolved

He had more Brady’s and apnea than average. This was often the main limiting factor in things like reducing his breathing support. He just had so many, sometimes upwards of 20 a day. Even though we knew it wasn’t all that harmful and mainly a result of his early birth it was still very stressful to watch. A couple of days before his discharge at 37+6 he just stopped having them. We weren’t on Brady watch for weeks like some people they just stopped quite suddenly.

The other big issue was an infection with enterovirus at about 35 weeks. The virus was in his blood and brain so it was meningitis. He was really unwell from this and it was bad enough that he had to be intubated and transported to a higher level nicu in the middle of the night. This was the scariest time for us as there were a few moments we thought we might lose him. We had a failed detubation with a very difficult reintubation that I was present for. He probably got pneumonia as well. In the end he was at the other hospital for a week but after that week he was completely over it. He was home 10 days later.

How many days until discharge and what their criteria for coming home were

He came home at 37+6 and spent a total of 60 days in hospital. The main issue was that he had to outgrow his Brady’s which happened kind of quickly in the end, and either had to take all his feeds orally or we had to be trained for a ng tube. In the end that wasn’t necessary because he drank all of his feeds.

Any ongoing issues since coming home related to their prematurity, and how you’ve been managing those

Not a lot tbh. He’s a little more sensitive to busy environments so we try to keep that in mind. We haven’t taken him to public places during flu season to reduce the chance of respiratory infections. And we’ve kept him home for his first year, without daycare, also to keep him healthy. He’s going to start daycare in a couple of weeks. We’re also under extra scrutiny for possible cerebral palsy because some tests results have shown he had an increased chance. Fortunately his development is normal so far, so if he turns out to have cerebral palsy it will most likely be a milder form. His eating and drinking are going really well.

Anything else you’d like to share!

All the best of luck to your little one! I really hope everything will go smoothly.
 
@sirsteve Thank you for sharing. How scary to deal with such a major issue after you probably thought you were out of the woods. That’s a lot to go through!
 
@kimhimmel It was very scary! And exactly like you described; one day we were talking about his first bath, next day he was really ill. However baby’s that are born at normal gestation can also get very ill from this kind of infection. It was just very unlucky that he contracted it. We’re just very thankful he’s doing so well now.
 
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