@kimhimmel We came home Friday after 119 days in the NICU. We’re still working on feeds but overall so far so good. She didn’t need any tubes, and no oxygen! I will say, during our stay it felt never ending like we were never going to make it home. But now that we’re home, it feels like we were never even there. Feels like I’ve had her home this whole time. we struggle giving her her meds because she pukes them up immediately so without the tube it’s difficult to get them in her but overall we’re doing well!
@kimhimmel
- 2lbs11oz, (born 3/3 at 29w1d, single (currently 32w4d, 3lbs12oz)
- Partial rupture of the placenta, I did get a steroid shot and magnesium drip.
- Has always been on 21%o2 High flow, Bubble CPAP, currently on High flow (2.0L, 21% o2)
- G-Tube 33mL over an hour and a half, was at 2 hours previously (these have been fluctuating)
- We are doing so far so good! Just a flowing and growing
- TBD
- TBA
- Kangaroo time is literally our favorite time!!! It’s been a wild almost one month in the NICU but we are trucking along!
@kimhimmel Not really, for our NICU it’s a minimum of an hour to hold and during his feeding time. I typically do about 2 hours at a time once a day.
@kimhimmel He’s doing so good! Still in the NICU but moving closer towards our original due date and making strides with feedings! We are on a bottle now, drinking 60mL. Still have Gtube in though. And Still using high flow but at room air (21% and 1liter.) And he’s an ounce away from 6lbs! How’s your little one doing?
@kimhimmel
Xo
- 3lb7oz 30w+6d, singleton
- No reason it was sudden. I had gestational diabetes but my doctor said that wasn’t the cause so I’m not sure to this day why it happened.
- My baby was only on cpap and came off 8 days later, fully on room air.
- This was the step that took the longest, but she started bottle feeding on day 17 then fully taking bottles 4 days before coming home at 35w+5d.
- No major setbacks the only challenge was with bottle feeding as she would desat and Brady when she first started taking the bottle, but I pushed them to keep trying but still give her breaks when she was too stressed, like if she had an exam that day or if she took a whole bottle earlier I’d let them tube the next feeding just so she’d rest. And slow and steady really helped.
- She came home at 35+5, her criteria was feeding mostly, she was gaining weight fine and didn’t have any events for about a week before coming home.
- No issues but she’s been having some reflux lately, other than that everything is good. We met with the PT this week and they said she’s actually ahead. She’s holding her head up a lot and trying to flip over and move.
Xo
@poppies78 Wow. She moved forward quickly! That’s really great.
@kimhimmel
- 2 lb 10 oz at 31+1 (dropped about 5 oz after birth), singleton boy. He had IUGR, so I'm sharing our experience because he was the size of a 28/29-weeker at birth.
- Our little guy has a kidney anomaly (not life-threatening) so we were having extra monitoring from MFM. Had an amnio and genetically, he's great. Went in for a routine scan at 29+4. Everything but his head measurements had fallen to below the 5th%ile (he was consistently measuring mostly average 5-6 weeks earlier, for reference). They saw reverse and absent-end intermittent cord flow. They took my BP (which was quite high as I was extremely worried). Admitted me (BP came down to slightly elevated levels) and administered the 2 BMZ shots (24 hours apart). Tested me for pre-e, which I had, though it stayed "mild" the whole time (I honestly felt fine). 1st goal was to get to 32 weeks and reassess about possibly extending to 34. Had twice daily NSTs, twice weekly scans (BPP?). Drs. said the steroids would create a "honeymoon" effect and the cord flow normalized for the first 5 days. After that, absent-end flow started to reappear.
During the BPP scan I had at 31+1, my husband and I both saw the reverse flow doppler wave reappear and knew time was up; I was barely back up to my room and the OBs came in asking me when I last had anything to eat or drink. (Unfortunately, I had just had some coffee, so we had an evening c-section.) He was breech but also SGA, and they were worried about not wanting to stress him with labor. I was grateful that I didn't have to choose because I wanted him out as safely as possible and was able to be awake for his delivery. They did give me a bolus of magnesium about 2 hours before my scheduled time and then a low dose drip (IIRC) through delivery for neuroprotection. That was a memorable 30 minutes (wanted to drink some water so badly), but I felt much better once it was through. My BP returned to normal levels after delivery and has basically been normal ever since. Little guy's APGAR scores were 7-6-9. My placenta was smaller for gestational age, heterogenous, and had two notable areas of infarction (clots?). I had had an SCH bleedout, as well, around 11 weeks, so I feel strongly that it was a placental issue that caused the IUGR. - Little guy was put on CPAP (they almost intubated him for surfactant the first few hours in the NICU, but he showed enough improvement that they waited and he tolerated CPAP) and stayed on it for his first week of life. For the bulk of that week, he was on the lowest setting and successfully came off of it on his first go. He received caffeine therapy for a few weeks to help lower his heart rate a bit. He was normalized by the time he came home.
- Feeding was tough. He started showing signs of readiness right before 34 weeks and took to it well (we thought). The nurses and SLPs always commented that he had a good suck. However, after an initial success on his teensy number of ml's, he couldn't keep up with the ever increasing volume expected of him. Around 36 weeks, I remember the head neonatologist telling me he was on the "short list," meaning expected to go home in 2 weeks. We were overjoyed. But he couldn't finish his bottles. Occasionally he would finish all of his bottles for one of the night nurses, but I think even on his best day, he only ever made it to 76% of his shift min (and he needed to do like 80% to hit a trial for all feeds by mouth). At 40 weeks, a well-intentioned nurse offered to let me push him around the hospital (outside) in a stroller (she had to come with us, of course), and I died inside. He was old enough for a buggy ride, but not healthy enough to go home. The next day I asked for him to join the "Grow at Home" program, where we would learn how to insert the NG tube, track daily feeds and diapers, and take daily calls with the neonatology team. He came home at 41+1 weeks. (See #7.)
- No complications outside of feeding. He was very much a grower and feeder. He did have bad silent reflux and the head neonatologist took pity on us and got him a Rx for omeprazole (stayed on it until 11 months old). He also would frequently be constipated (still is) so we started a tiny dose of Miralax around that time, as well.
- He had a 70 day NICU stay. He could've gone home likely 2-3 weeks [certainly on an NG by that point] early if we looked at the non-feeding related milestones: IIRC he had to be 4 lbs, maintain body temperature, pass the car seat test, and be gaining weight regularly. He also had to be drinking at minimum 80% of his target feeding goal for 48 hours without any episodes.
- He had major feeding issues due to undiagnosed dysphagia, but he kind of flew under the radar because his symptoms weren't super severe. Everyone said the "lightbulb" would turn on around 38-40 weeks in terms of finishing bottles, but it never really did. We thought it did, and were able to remove the NG tube about 3-4 days after bringing him home. But as he got older, he was struggling to finish more than 2-2.5 oz per feed and his weight gain was always borderline FTT. He struggled to breastfeed, even with a nipple shield and different positions (it was like he would get quickly overwhelmed by the flow). We trialed different formulas, different bottles, going dairy and soy free, etc. We called the hospital after 3 months as he seemed to be developing a bottle aversion. He would also "itch" at his nose sometimes during a feed, like in discomfort. After a few weeks of feeding therapy with an RD and an SLP, private visits with a highly regarded lactation consultant who was stumped by his lack of feeding, and a few visits with pediatric GIs, we had a magnesium barium swallow study done which showed he had mild to moderate penetration when swallowing (AKA dysphagia) and really bad reflux. We got him on a thickener and also massively increased his reflux meds, and by 9-10 months GA, he was finally drinking an appropriate amount of his bottles (like, 4 oz, then 6 oz, then an amazing 8 oz). Up to that time, we were feeding him every 3 hours per the recommendation of his pediatrician and RD, even at night, so we were grateful to finally let him sleep through the night and so could we (sort of). We were able to wean him off thickener just after his 2nd birthday per improved swallow study results and with the blessing of his ENT. We did have him scoped at 16 months to look for a laryngeal cleft, but they didn't see one (they are often missed, though). His ENT felt strongly it was caused by his prematurity and complicated by GERD, though it can have a neurological cause, too.
Not related to feeding: he does have a benign hemangioma (above an ear, hidden in his hairline) that greatly reduced by his first birthday, and he also had an umbilical hernia and a hydrocele, but again, benign issues likely related to prematurity that resolved without any intervention. - Since #7 was really long, I'm adding this here: sign your babies up for Early Intervention before you leave the NICU if your baby qualifies and you live in the US. My son is almost 3 and about to age out of the system. He has reached his milestones generally by his his adjusted age if not by his actual age. He has an expressive speech delay, but most people cannot tell. He technically tested average with his private SLP in December, but we are continuing it through EI until he's 3 and will get him re-evaluated with a new SLP at that time. [He's almost 3 but still has final consonant deletion and talks in the third person when he forms fuller sentences.] He also toe walks and is now in PT because his muscles are getting tight. I do wonder if he may be neurodivergent (possibly sensory, maybe ADHD, less likely ASD), but his OT and SLP with EI don't think so or at least qualify that by saying he doesn't show enough signs to get a diagnosis at this age (he's very social). He's going to have his 3rd NICU followup visit this spring and we'll ask their opinion at that (so far, no one has suspected it outside of his dad and me). He is a lovely little guy, very curious and very funny. Outside of the feeding issues and the obvious NICU experience, he was honestly a delight as a baby. He's also still quite small but is trending around the 15th%ile for height and about 10th percentile for weight (his head remains ginormous at over the 90th%ile, but that's likely part genetic). We did feeding therapy (for solid food eating!) last summer at 2yo, thinking he was picky, but the RD, SLP, and MD all said he was growing fine and eating as expected for his age. All that is to say, if you have doubts about anything, reach out to the specialists. Don't linger in anxiety. If your pediatrician won't write you a referral when you have concerns, consider finding a new one or work through EI to get that help. Also, Rowena Bennett's Your Baby's Bottle Feeding Aversion should be mandatory NICU parent reading, along with complimentary therapy sessions for improving mental health and well-being.
@kimhimmel
- 29+3 weeks and 1lb 15oz (single)
- I was hospitalized for 34 days in Feb-March 2022 at 25 weeks pregnant with severe preeclampsia and my son was severely IUGR. In that time I was able to receive two rounds of steroid shots and 12 hours of a magnesium drip. Emergency C-section.
- My son was able to breathe enough on his own that they were able to bring him over to me to see him which I was so thankful for. He was then put on the CPAP machine at its lowest setting. He did have to be intubated for about 5 hours for them to pump surfactant into his lungs but extubated himself when he had enough lol he was then back on the CPAP machine lowest setting for about 6 days before moving to the regular nasal cannula and slowly weaned over the course of like 40-50 days until he was breathing room air on his own.
- He was so tiny that they thought feeding was going to be the hold up for him but he continued to prove them wrong. When he finally was able to bottle feed he took to it very quickly.
- There were days that were more stagnant than anything, he had days where he didn’t gain or he lost a minimal amount (like 5-20g) and those were always frustrating. As we got closer to discharge he had a couple of set backs. He was supposed to be discharged the next day and when we came in he had a serious BRADY episode that he didn’t recover from on his own and that was more than 30 seconds. So the clock reset and we had to wait at least 48 hours before we could try again. After that BRADY episode he failed his car seat test twice which reset the clock too because you can’t do those too close together either.
- In total he spent 61 days in the NICU (being discharged about 2 weeks before his due date. In order to be discharged he had to go 48 hours without BRADY-ing, take 8 bottles within 10% of finishing them throughout a 24 hour period and had to be above 4lbs.
- At the beginning it was a little stressful because he had pediatrician appointments, neonatologist follow up appointments, and physical therapy to make sure he was on track for his adjusted age. All which went well and he slowly made his way on to the curve for his actual age.
- He’s now in the 55th percentile for his actual age (just turned two a week ago) and has met/exceeded his milestones for not just his adjusted age but his actual age which has been amazing to watch. I just had his baby brother the day before his 2nd birthday last week. I made it to 37 weeks on the dot with this second baby and only was delivered because I started to have contractions, and my BP was in preeclampsia range. They ran labs and labs showed that I again was developing preeclampsia. I’m now on BP meds postpartum.
@lmac45 Wow, he did incredibly well for his size. That’s an amazing outcome at that weight.
And you lasted 34 days with severe pre-e?!?! Fighters, both of you
Amazing that things went better the second time. Apparently the risk of early pre-e happening again is 50/50 so I’m so glad you ended up on the right side of that coin toss.
And you lasted 34 days with severe pre-e?!?! Fighters, both of you
Amazing that things went better the second time. Apparently the risk of early pre-e happening again is 50/50 so I’m so glad you ended up on the right side of that coin toss.
@kimhimmel
- Singleton, born 30+5 at 2lb 12oz
- Preeclampsia and IUGR, I was hospitalized for 8 days before emergency c-section. Was on magnesium drip pre and post birth and received both steroid shots.
- Baby as on cpap for 1 week, and oxygen nasal cannula for about 3 weeks
- Starting breastfeeding and drinking bottles in the NICU as soon as oxygen came off and really struggled with this. She was drinking 2-5ml for a while before she started taking larger volumes. She started taking fully bottles 3 days before being discharged
- A couple of times they tried weaning her off of oxygen and had to bump her back up. She also struggled to regulate her body temp so we kept going up and down on warm support in her incubator/crib. She also had brady and dsats until she was about 35ish weeks. I will say the hardest part was the eating, she took forever to get it. Some days she would drink almost all her bottles and the next day she would have to tube feed, until one day she just got it.
- She spent 49 days in the NICU, came home at 37+5. She had to take 90% of a full days eating via bottle for 48 hours, no oxygen support, regulate temp, no brady or desat for 72 hours, and pass the car seat test.
- The only issue since coming home has been some neck muscle tightness and a bit of head flatness of her right side due to positioning in the NICU, we are doing PT to help resolve it.
The NICU was terrifying and felt like an eternity, but it eventually ended. And honestly, I forget about it most days unless I see a picture of us during that time or it comes up in conversation. We now have a wonderful 7 month old baby (5 months adjusted) who is meeting all her milestones and weighs 16 pounds! The best of luck to you and your little one, just take it one day at a time.
benison2003
New member
@kimhimmel
- 30+6 weighing 2lbs 5oz
- I had preeclampsia without severe features. He was an IUGR baby because of the blood flow from the placenta. I was hospitalized for 13 days before needing an emergency c-section because his heart rate started to drop. I received 2 rounds of steroid injections during my stay and was able to get a mag drip before surgery.
- He was on CPAP for about 3 weeks then switched to high flow nasal cannula. Pretty much the entire time though, he was on the lowest setting and doing most of the breathing on his own. They did a room trial like 4-5 times before he didn’t need the support. Before he was off it completely he was only on it during feeds. He was on oxygen support for a total of 6 weeks.
- Feeding was a pain in the ass and that’s what took the longest to be discharged. It was another 2ish weeks just working on feedings after he was off oxygen support. He would just constantly fall asleep during his feeds and they’d have to gavage the rest. Eventually it just clicked and he started to take full or close to full feeds.
- No major setbacks or complications. He had a pretty boring NICU stay (thank god!).
- He was there for 59 days and was discharged 5 days before his due date. He needed to have full feeds and be 5lbs to be discharged.
- He sucked at eating for a while when he came home, but he’s definitely improved. He’s 6 months old, 4 months adjusted and loves to eat solids. He has an umbilical hernia that developed when he was in the NICU. It’s smaller, and our pediatrician says it should correct itself. We also saw a pediatric surgeon who said it isn’t terrible but if it’s still there, they’ll do “surgery” when he’s 2. The surgeon said it’s more of a procedure than anything with one little stitch. Additionally, because he was so small, we were unable to get him circumcised. We saw a pediatric urologist and they will be able to do it when he’s 6 months adjusted…though they’d have to put him under anesthesia for it since he’s older and more aware of his surroundings.
- He’s doing so well, still on the smaller side, weight-wise (about 13.5lbs), but he’s super tall (which makes sense because me and my husband are tall). I try not to have expectations for him in terms of development but he doesn’t seem to be too far behind and I’m sure he’ll catch up quick!
mikalister
New member
@kimhimmel Wow 21 days! Congratulations. Our story below—mine is different than most here from what I skimmed. I see someone say 28 weeks as that magical number—that’s what I was told and unfortunately I don’t think I was mentally equipped for what we faced. Baby is ok now, but this will never be fully behind us.
- 28+3, about 2.5 pounds, dropped to around 2 after birth
- I had HELLP syndrome — came on pretty suddenly, stayed pregnant for about 4 days in the hospital (magnesium and steroids) and had an emergency c section
- We were very lucky with his breathing—think he was briefly intubated when he was born but by the time I saw him a couple of days later he was on cpap. Remained on that for about 1.5 months, moved on to cannula, and then pretty quickly in room air after that (maybe by 2 months?)
- A slog. Started out well maybe around 34 weeks, but had a major set back and suddenly started vomiting and having episodes (when we were lucky and he never really did prior). Swallow study was done and he penetrated liquid into his trachea and never fully aspirated. We had to thicken his formula —that was tough on him so he ended up going home on a ng tube and quickly didn’t need it. But the first few months home eating was really challenging and he teetered on needing a gtube. It’s better now but still not great. He’s almost 5 months adjusted
- Was on NEC watch I think around week 3–antibiotics, npo, etc. incredibly scary and luckily he didn’t develop it or they caught it in time. At the same time, they were monitoring a grade 2 brain bleed—it progressed quickly and by end of week 3 he had hydrocephalus and grade 3. He was transferred to a level 4 Nicu from a level 3. He had two reservoirs before they placed a shunt a month later. He had a small bit of damaged brain tissue —either from the hydro or a partial clot in one of his veins in his brain. Just unlucky, no reason for the clot after a battery of tests to rule things out. They gave a very conservative outlook on his development and said high risk for cp. So far, with the help of Early Intervention, he’s doing decently well with working toward milestones. We are cautiously optimistic and time will tell.
- In the Nicu 101 days—same criteria as most, except he went home on an ng tube and we had to show we were capable of changing and caring for it
- Feeding is a slog. Tbd on the big milestones, but being home I think does help—so if given the opportunity to leave earlier with a tube, I would still take it. EI is a blessing and lean in all the way
- Use this community as Google, do not Google. I searched this community for so many things and still do. When they say it’s a rollercoaster, it is. It is hard not to compare to others—we are luckier than some and less lucky than many. Thinking like that made it hard on me, but it’s natural. So while collecting all of this information can be helpful, it can also do some funky things mentally. And therapy. All the therapy.
@mikalister seconding "use this community as google" i eventually learned on my own that how i googled things now was reddit searching r/Nicuparents + whatever term. regular google is worse than useless for us. people out in non-NICU land have no idea what they're talking about and many of the articles you'll find are very outdated and make things sound a lot scarier than they are. definitely search this group first about anything! good advice
@mikalister Good advice. And wow, you’ve really been through it. Glad you’re home and hopefully this challenging time gets further and further behind you