Tell me your stories of your 28-30 weekers

@kimhimmel
  1. Born at 28+4, 2 lbs on the dot.
  2. Pre-Eclampsia. We were send to a childrens hospital at the request of her Gyno for a second opinion based off 28week scan. Baby was measuring slightly small and they were worried about blood flow through the cord. Childrens hospital saw the same and were extremely worried about my wife's BP which was sky high. Immediately gave her steroid shot #1. After an insanely hectic first night her BP finally came down after receiving all the meds they could give. Goal was to get to 34 weeks and then deliver baby (which meant 6 weeks straight not leaving a hospital bed). Wife's BP spiked again 3 days later and it was go time.
  3. Was on a breathing tube very briefly, maybe an hour max. Was on cpap for around a month. Had a short spell off cpap then went back on which is common. Was on a high flow nasal cannula for majority of our stay. IIRC around the 38 week mark she was taking room air very well. Would make adjustments to flow based off feedings/other workups. For ex days she had transfusions they would up the flow so she's not working so hard to breath.
  4. Feeding was a grind. We went home with an NG tube in for well over a month. At this point she was 4ish months old, one month adjusted. She'd take around 60-70% of her bottles then we'd have to tube the rest. Once we switched to a thicker formula (Enfamil AR) she began to take full feeds and spit up less. She ripped her tube out 1-2 days later and never looked back.
  5. Thankfully no major setbacks for us. Had a few brady events early on that she resolved herself. Our only issue was constipation & feeding. The formula was hard for her to pass while in the NICU & they offered no resolutions. Thankfully we found things that worked at home with prebiotics.
  6. In total we spent 90 days in the NICU. So basically we stayed up til her due date (which is common for really early babies). We just had to learn to place her NGtube. Other than that it was based off her eating decently well & not having issues off breathing.
  7. No issues thankfully. It's certainly not been easy with how loud NICU babies are at night but thankfully that spell is over lol. The feeding tube stuff at home was rough. Her drs were very strict about maintaining 9 feeds (every 3 hrs) for the first month and half. This was extremely hard to deal with because it could take 1.5hrs to feed her. Next thing you know it was time for the next feed even tho the last finished. Little sleep and lots of stress early on.
  8. Advocate for your little one in the NICU & ask questions. Highly advise you to care for yourself. Our journey was long. Being in the NICU with all the beeps and noises was very stressful early in our stay. I tried to go each day but recognized I needed to stay home at time for my own sanity, my wife as well. Your LO will be in great hands!
 
@kimhimmel Single baby Born at 28+2 weighing 1 pound 15oz

IUGR and absent end diastolic flow on USS. Emergency LCSC for non reassuring CTG. Had steroids x3 and mag sulph prior to delivery.

Ventilated x24 hours, CPAP x3 weeks, Hi Flow O2 x1 week - he kept pulling out the nasal prongs so they just trialed him on room air after the week & he was off all breathing support by just under 32 weeks. He had a dose of surfactant within the first 48 hours which helped a lot I feel.

Queried NEC 2 times so all feeds were stopped along with septic work ups, x rays and IV antibiotics. He didn’t have it, they were just super cautious.

Started oral feeds from breast and bottle at 33 weeks and was on full oral feeds within 2 weeks. Went home combine feeding and switched to exclusively nursing 3 weeks later.

Spent 51 days in the nicu and went home at 35+4 weeks gestation at 4 pounds. Had to take 100% of oral feeds x48 hours plus be gaining weight in order for discharge as well as 35 weeks gestation as a minimum with no bradys x 3 days.

He is now 13 weeks corrected and weighs 12 pounds 4 oz! Meeting all milestones for his corrected age. Did have an inaugural hernia repaired that wasn’t there in the nicu at 6 weeks corrected but it went very smoothly. I wish he’d sleep longer stretches but can’t complain really!

Overall a relatively short, uncomplicated stay in the nicu considering his weight and gestation, for which I am so grateful. The first 3 weeks were hard but then he basically became a feeder/grower.

Best of luck OP with your little one. All the doctors cited 28 weeks as the “magic number” to get to and that certainly rang true for us.
 
@kimhimmel Had my daughter at 29w 3d due to my placenta abrupting. I'd been having bleeding on and off 10 days before she was born and got 2 doses of betamethasone to help her lungs. She was 2lbs 10oz at birth. She got a dose of surfactant after she was born and was on cpap until 32 weeks, did fine for a few days on no device, was on a low flow cannula for like 2 days, then fine off devices. We started working on breastfeeding at 33 weeks and bottle feeding at 34 weeks and she really took off with eating. She passed her car seat test on her first try and was discharged 44 days later at 35w 5 days, weighing 5lbs 4oz.
When she was 3 months actual and 3 weeks adjusted, she got very sick with rhinovirus and human metapneumovirus and ended up in the PICU for 10 days and nearly had to be intubated. When she was 1, she was hospitalized again for 2 days due to RSV.
She's 5 now and doing great! Has no delays, and you'd never guess she was born 11 weeks early other than her being on the petite side. She's in 4K this year and loves school and loves going to dance class. She's our wild tiny terror and she keeps us on our toes.
I will say still when we have a bug going through the house, she does still tend to get hit harder than her siblings. We both had influenza A in January and she was being watched very closely because the doc was worried she'd get pneumonia from it, but she eventually turned the corner and avoided another hospital stay.
My main advice to you as both a mother and now a NICU nurse is to keep that baby home as much as possible. Try to avoid putting baby in daycare, and during cold/flu season, do not take your baby out, and don't allow anyone who's sick to visit. Their immune systems are much weaker compared to a full-term baby. Also if your baby qualifies for the RSV vaccine, get it!!!
 
@kimhimmel 27 weeker, 1.5 lb, uterin issue. Baby did 74 days in the NICU. Went through most of the typical progress steps with respiratory and feeding. Feeding is the most drawn out part because it’s usually the last for most babies. Only major issue we had was a minor infection for a couple of days and slow weight gain overall.

It’s best to anticipate length of stay aligned with your original due date. Anytime before that is bonus but this helps set expectations.

With a long term baby, two of the hardest parts was watching other babies go home and the day I was discharged and leaving my baby at the hospital. It got easier over time but the best thing was knowing that my baby was being taken care of by exceptional nurses and finding a care team that I liked.
 
@shonspawnel That makes sense about it being hard to watch others go home. I’m grateful that here we have a private room with our baby, so unless I specifically make conversation with other parents in the family lounge, I don’t know anything about the other kiddos.
 
@kimhimmel Yeah, just a forewarning, they’ll generally play music and have all the nurses line up and celebrate as you walk out with your baby. It’s hard to miss. If I noticed them lining up, I’d go back to my baby’s room and put head phones in for about 10-15 min.
 
@shonspawnel They definitely don’t do that here!

But it’s also a big NICU with 40-60 babies at any one time. They’d be doing it constantly. And I feel like it would be really traumatizing for parents stuck here. I’m quite sure they don’t do it.
 
@kimhimmel 28 +5wks due to preeclampsia, high blood pressure and other medical issues. I had a son. He was 2lb 5oz. He was off all breathing support by day 12 and was moved to SCBU by day 14.

He came home after 9wks. He had to feed properly and be at the correct weight before he could come home.

He had some issues mainly with ROP and poor growth, but he got past it. Prematurity has thrown the odd curve ball here and there. Milestone wise he's either hit them at actual age or when he reached corrected age.

He is still under hospital care but we are down to one clinic.

He's a happy normal 3 year old currently eating his breakfast and watching Bluey.

The thing I have learnt about prems is they do things in their own time.
 
@kimhimmel
  1. Born 29w, weighed 2lbs 11oz
  2. Pre-e w/severe features; emergency c/s after they lost his heart tones on the monitor and couldn’t find them again (he had a big decel and just never recovered), which coincided with my deciding it was just done with the pregnancy game and I fell apart. I had received the 2 shots of steroids and already been on the mag drip since I had been there awhile.
  3. He was intubated and given surfactant, then moved to bubble cpap. He suffered from WWBS (wimpy white boy syndrome), so he was on bubble until he was a little over 35w. We had tried nasal cpap, but it didn’t help. We also had to do multiple lasix bursts. He is a CLD/BPD babe.
  4. He didn’t even get to try to eat until he was over 35w. It felt like forever - which is pretty much normal - but it was just ~2 weeks. He would hold off on those last 10mL for days, then finally would took it and we went home just before 38w.
  5. He had a tongue tie, wimpy lungs, and he was angry and very particular about everything. He got the tongue tie clipped, went home on oxygen and lasix, and we are still working on anger management 🙃
  6. He was there for 65 days. Would have been slightly less but one of the doctors thought she would mess with our discharge plans and long story delayed us from discharge to “try to keep us from needing oxygen” (that he needed 5 more months post-NICU). Luckily, the other providers and support staff backed me up and we got out of there soon after. Our NICU is basic with discharge criteria - eating on their own, breathing on their own, holding their temps on their own, and all while gaining/maintaining weight.
  7. Son is 2y and he’s in multiple therapies. We don’t have official diagnoses yet, but we know he has some sensory processing issues and he’s on the spectrum. But so is our oldest, so it’s not really a big deal for us. Our whole family is pretty much neurospicy is some way or another.
 
@kimhimmel I know you said 28-30 wks but I'd like to share my daughter's story in case it might help someone else. My daughter started having heavy bleeding & cramps at 17 weeks. She went to the ER where an ultrasound was done and found out the baby was doing fine and she wasn't having a miscarriage. They saw a white line in her cervix in the ultrasound but didn't say too much about it and said there was some thinning in her cervix and also that she had a bacterial infection. She stayed in the hospital overnight and she was sent home the next day with antibiotics. She never really stopped bleeding completely but it did slow down a great deal. She had started a new job and went about her business but always felt something more was wrong because she never completely stopped bleeding. At 24 weeks she called me early one morning crying and telling me that she was cramping badly again & gushing blood. I feared that she was losing the baby. She went back to the same ER but they put her in an ambulance and had her transferred to another hospital with a Level 4 NICU & maternity care specialists. They did an ultrasound and found that the baby was doing great and diagnosed her with chronic placental abruption. This is what was happening before at 17 weeks but she was misdiagnosed. The white line they saw in her uterus on the ultrasound was the beginning of the tear. She stayed in the hospital until she gave birth at 26.6 weeks via emergency C-Section. The baby weighed 1 lb 15 oz & was 13" long. My cousin is a NICU nurse in a different state & she warned me that although the baby was doing ok now it's known as a honeymoon period because lots of things can go wrong in the following weeks. Well, it never did. The baby did have to get a blood transfusion at around 29 weeks but her breathing held steady the entire time and she continued to grow & thrive. Every time they increased her feeding and turned down her oxygen she tolerated it well. She spent 97 days in the NICU and is now home. With the exception of having a bad cold & cough she's doing great. She now weighs 9 lb 4 oz and is 20" long. Even though she's 4 months old her gestational age is 4 weeks. We're all so blessed to have this precious little one in our lives. She's truly a little fighter & a survivor.
 
@kimhimmel Hello again 💚
  1. Max is a singleton, born an hour and a half short of 29 weeks at 2 lbs 4 oz.
  2. He was born due mostly to worsening maternal symptoms of preeclampsia (uncontrollable high BP on maxed out meds, severe RUQ pain, nausea/vomiting, rising liver enzymes) and increasing intermittent absent cord flow causing IUGR - upon admission at 24+3 he measured right on time, then at 26+3 he was a week behind, and did not grow measurably between that scan and the one the day before he was born. I had been kind of put on "baby watch" the whole 28th week - got a second round of betamethasone shots (had my first at 24+3 when I was admitted), had q6 blood draws and was told if my labs or BP get worse we would do the section within hours. They finally made the call the evening of 28+6 and I was put on mag, wheeled to L&D and told they would try to keep me pregnant still as long as I stabilized on IV meds but to expect to need to deliver sometime 29+0. I made it less than two hours in L&D before they wheeled me to the OR, so while expected, it was still technically an emergency c-section.
  3. At birth they initially attempted CPAP, then BiPAP, but it was clear within a few minutes he needed to be intubated. He had a stable two week honeymoon period of lower settings and oxygen requirements in the low 20s, then progressively required higher pressures and FiO2. Switched from SIMV to NAVA somewhere in here. Around four weeks old we decided to try DART to get him extubated. He got slowly worse during and then at six weeks old shortly after the DART ended he took a sudden turn and would not sat above 75 even on 100% oxygen and high PEEP. Put him on the oscillator and cranked it up, added nitric, and started a second round of DART at double the normal dose and that finally got him satting in the 90s. We were able to wean him off the nitric, then get back on NAVA during the 10 day DART and were extubated about two weeks after getting off the oscillator - so nine weeks total intubated. He spent almost a month on BiPAP after; we started on NIV NAVA but kept going up in settings to the point of discussing reintubation, then switched to regular NIMV and weaned only his rate, not his pressure, until we were able to take that away and put him on a CPAP of 10. We weaned that super fast, and were onto 4L high flow within a week. A week later we are now on 2.5L. We've been weaning slower so he has more support as he learns to eat. We were allowed to start bottles at 3L and can go home on 1L or less.
  4. He only started taking feeds by mouth a week ago, and at post-term age, so our journey has been pretty different than a lot of the other stories I've seen. We started oral feeds "per cues" meaning he could take 8 bottles a day from the get go if he was showing he wanted to at his scheduled time and he took six full bottles that day. He's taken 50-90% every day since and needs 2 days of 100% PO feeds to go home. He was moved to on-demand feeding yesterday meaning he can eat whenever he wants as long as he meets a 12 hour goal. Our main obstacle has been Max's refined palate; he refuses to eat frozen breastmilk and doesn't like the HMF very much either. I don't have enough fresh breastmilk for his feedings so we've introduced formula, and we figured out he likes that more than fortified milk, so we are feeding some feeds of plain breastmilk and some feeds of 30 calorie formula to meet his needs.
  5. The biggest setback was his fun little bout with respiratory failure above, at six weeks old. We are not sure why it happened. Some of his docs think it was sepsis but we never found any infection in his cultures. I and some other docs think he just rebounded from weaning the steroids. The only other hiccup was that since he needed 100% FiO2 for so long he developed stage 3 ROP which required laser surgery at eight weeks old, which was done at bedside and he did great with it.
  6. We are on day 104 and will likely be coming home in the next 14 days. Our criteria are:
    -Less than or equal to 1L oxygen support (most babies are required to breathe on their own but severe BPD babies have this requirement)
    -100% feeds orally
    -Maintaining temperature ✔️
    -Consistent weight gain ✔️
    -No A&B spells ✔️
UPDATE: We came home on day 117! He got his feeding tube out 5 days prior to discharge after he was 100% PO for 72 hours (this was about 3 weeks after he started feeding orally). Then we just had to get his carseat test done and have the home health rep bring his oxygen equipment so I could room in with him and learn how it worked.
  1. Can't answer this yet but will circle back around!
UPDATE: In the almost 3 weeks we've been home it's been all over the place. He's been newly experiencing a good bit of bleeding from his hemangioma on his back and I had to learn how to dress the wound in order to prevent/control that. So scary to pick him up in the middle of the night and have his back/sheets soaked in blood but the doctors think the amount is less than it looks. We also brought him to the ER last week because he was spitting up so much he was losing weight, and luckily there were not any life threatening problems, we just had to experiment with his formula and finally found something he keeps down. Lastly, not really a problem with his health, but the pulse ox we came home with was such a hassle to use and carry around with him, so I forked over $600 for an Owlet BabySat that is so much more convenient. He loves to wiggle his prongs out which is massively annoying but I'm glad I have it to let me know.
  1. We're very fortunate that his brain ultrasounds have all been normal, his tummy has always been good, and he is on track for his adjusted milestones all things considered. On top of being a preemie it's hard to develop when you spend all your hours in the same spot burning most of your energy trying to breathe/stay alive.
I would be happy to answer any questions for you or be here to listen at any time :) Always rooting for you and your little one!
 
@kimhimmel Yes! We got home on day 117, on 4/12. We are on 1L oxygen and are at the doctors like every other day but we did it. ❤️❤️❤️ Hope your little dragon is kicking butt! Will edit my comment to answer #7 :)
 
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