https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 21 Apr 2026 05:13:54 +0000 https://boards.hellobee.com/topic/nicu-help#post-2861975 Thu, 13 Dec 2018 15:58:17 +0000 littlehunny 2861975@https://boards.hellobee.com/ <p>I had my twins at 33w 4d. There is a lot of great advice here already. My midwife told me one day when I was super frustrated- "he's your baby- you need to let them know what you want to do and advocate for him." It's hard because when I was in the nicu it always felt like they were in charge of what was going to happen.<br /> One of my boys was out in 3 weeks, but the other kept having reflux issues. One day I walked in the nicu and he was screaming so loud because he was so hungry, but it wasn't at the 3hr point where they would feed him. I told them that he needed to be fed on demand when he was hungry even if it hasn't been 3hrs and even if i wasn't there yet. Once this started he was home within a week.<br /> Turns out he was so hungry at the 3hr point that he would gulp down his bottle (I was pumping as the boob tired them out too much) and then throw most of it back up because he got so much air.<br /> It's hard, but hang in there! :heart: </p> https://boards.hellobee.com/topic/nicu-help#post-2861791 Wed, 12 Dec 2018 21:24:38 +0000 catgirl 2861791@https://boards.hellobee.com/ <p>Would it be possible to nurse with an SNS? Would they count those ounces? Not really sure, but might be worth trying.</p> <p>Sending good thoughts your way! </p> https://boards.hellobee.com/topic/nicu-help#post-2861789 Wed, 12 Dec 2018 21:17:21 +0000 yellowbeach 2861789@https://boards.hellobee.com/ <p>DD was born at 32w3d and spent 34 days in the NICU, strictly as a feeder grower. She had an NG tube nearly the entire time, and a NEC scare our first week in. </p> <p>I remember desperately wanting to be home and being willing to do anything to get there. We were constantly told how her feeding reflexes would turn on “like a lightbulb” one day which just drove me nuts. That ended up being exactly what happened. Her intake increase wasn’t linear at all, but rather exponential once she got the hang of things. But man I could have slapped the next person who mentioned a lightbulb to me. They were right, but...</p> <p>I also am in healthcare and found myself really wanting to obey all of the NICU rules. In reality, the q3 feeding schedule is a construct of medicalizing birth. It’s convenient for nursing documentation and neonatologists to manage. At the end of the day, as long as he gets the daily CCs he needs, it doesn’t really matter if it conforms to the q3 schedule. </p> <p>Ultimately I credit an amazing salt&amp;pepper NICU nurse for helping us break out of jail. I seriously grabbed her one day and begged her for help. Told her I was going insane and stir crazy in there and needed to be home. She pushed to pull the NG and we were home in 48 hrs. </p> <p>Thinking of you. This is HARD. 💜 </p> https://boards.hellobee.com/topic/nicu-help#post-2861775 Wed, 12 Dec 2018 19:44:55 +0000 DesertDreams88 2861775@https://boards.hellobee.com/ <p>I imagine this must be an incredibly difficult situation. For what it is worth, my friend had preemie twins at 33 weeks, exclusively pumped for them using a spectra, and met all of their milk needs up through 15 months! I know that exclusively pumping totally sucks in comparison to nursing, but, it's an option. </p> https://boards.hellobee.com/topic/nicu-help#post-2861764 Wed, 12 Dec 2018 17:33:28 +0000 Ms. RV 2861764@https://boards.hellobee.com/ <p>Just sending thoughts your way... DS wasn't a preemie but did spend 8 weeks in the hospital until he was well enough to go home. We weren't allowed home with an NG tube either and that was the major reason we weren't home earlier. </p> https://boards.hellobee.com/topic/nicu-help#post-2861755 Wed, 12 Dec 2018 15:51:35 +0000 jhd 2861755@https://boards.hellobee.com/ <p>Sending lots of love your way! The NICU is such a hard place to be. I have had an extended stay with both of my babies and it’s just hard. Even harder when it’s LO2 and you can’t be with both kids at the same time. I thought LO1 was never going to be able to take his feeds but he did get it rather suddenly and was able to get home quicker than I thought. LO2 did go home with an NG and only needed it for a week. I have experience at 2 NICUs, both well regarded and top in their respective cities. They are pro pumping but not pro breastfeeding. My body didn’t respond well to the pump and all the trauma of babies who needed major medical intervention so I was unable to establish a supply or breastfeed. I hope you find what works for you and your family. Don’t be afraid to push for what you need. Second time around I was a lot more vocal in rounds! ;) </p> https://boards.hellobee.com/topic/nicu-help#post-2861751 Wed, 12 Dec 2018 15:42:12 +0000 Mrsbells 2861751@https://boards.hellobee.com/ <p>:heart: hang in there! :heart: </p> https://boards.hellobee.com/topic/nicu-help#post-2861729 Wed, 12 Dec 2018 14:38:34 +0000 tiramisu 2861729@https://boards.hellobee.com/ <p>@lilyofthewest: I have a 25 weeker who came home 1 day before his due date. We ended up breastfeeding for almost 18 months. But back when we were in the NICU, we did mostly bottles and then gradually worked up to more nursing, less bottles after we came home.</p> <p>It sounds like your son is doing fairly well and I think will probably turn a corner in the next couple weeks with the feeds. How is his weight gain? So even if you breastfeed first, they give him the same standard amount in his bottle? It could be cause he's still a little early. Around 36-37ish weeks, I think our NICU used to let me breastfeed first and if we thought he got a decent amount would put less in his bottle and even sometimes none at all if we got a good nursing session in. They monitored his weight daily to make sure he was getting enough calories with the bf/bottle combo. Sometimes he would get tired and they'd have to just NG the rest. </p> <p>For the reflux maybe they could raise the top of his crib for 30-60 min after he eats? My son would brady/desat after feeds so they often left him propped up for a while before laying him flat. </p> <p>Hang in there. I know it feels like omg when are we gonna come home. For a while I felt like we were never leaving the NICU. Then all of a sudden within about a week he markedly improved and we came home! :heart: </p> https://boards.hellobee.com/topic/nicu-help#post-2861701 Wed, 12 Dec 2018 13:31:19 +0000 LAZB 2861701@https://boards.hellobee.com/ <p>@lilyofthewest: I don’t have advice, but sorry your going through this! I had an abruption with my third, but fortunately it was at 37+4 and only 20-25% so we didn’t have too many issues (although I’m wondering if his speech delay is related). Anyway, you’re doing great, keep up the good work mommying </p> https://boards.hellobee.com/topic/nicu-help#post-2861696 Wed, 12 Dec 2018 13:17:23 +0000 lilyofthewest 2861696@https://boards.hellobee.com/ <p>@QBbride: Thanks for weighing in!</p> <p>I asked about discharge with an NG tube as soon as the PPHN was clearly resolving and they said it is a hard no. I think I'll try to revisit it with my favorite of the NNPs. I get the sense that they have fairly rigid protocols but I'm not sure where the line is between "PIA to document/justify varying from protocol" vs really not allowed to vary from protocol.</p> <p>I mean, yeah, my patients are usually at least 13 years older...but...I've been an RN for 8 years now. I can measure things accurately, use an NG tube, use a pump, check for residual, etc. </p> <p>So far as I can tell, his reflux is largely a laundry problem. He's not bradying down at all nor having prolonged desats from it. Yes, he's briefly apneic and drops his sats to the low 90s or high 80s for 20ish seconds -- but I don't breathe while I'm actively puking either. They'll consider starting ranitidine at 36 weeks if it isn't improved by then, but he doesn't seem bothered by the reflux in the same way my #1 did so I don't know that I'm convinced that's even appropriate. No arching, no fussing/crying the instant he's flat, etc. I should ask more pointedly exactly what the concern is. </p> https://boards.hellobee.com/topic/nicu-help#post-2861694 Wed, 12 Dec 2018 12:57:03 +0000 sillymilly 2861694@https://boards.hellobee.com/ <p>I normally just lurk on here, but want to respond as I also had a 32 weeker. I remember having the same feeling, thinking that she never would be able to finish a feed (probably like the week before she went home), but one day the suck-swallow refluxed seemed to just click in for her and she did much better taking feeds by mouth. The nurses also switched her to medium flow nipples (the blue enfamil ones), as her suck just wasn’t strong enough for a slow flow nipple and she would tired too quickly. If your lo isn’t having As, Bs, or Ds while feeding and just needs to work on volume, that’s great! </p> <p>Breastfeeding in the NICU is hard. Make sure to advocate for yourself. If they won’t count the volume of milk taken in by breast, ask if you can try dry nursing (I.e. pumping before and having baby just latch and suckle). Drs had me initially do this as my dd had gi surgery and they had to control exactly how much milk she took in. They also suggested limiting nursing to 10 minutes so she didn’t tire. I was able to have a successful nursing relationship with my dd, but will admit it took a lot of work once we were home (you can probably search for my desperate post on here re: nursing a preemie). </p> <p>As for reflux symptoms is your lo be given Zantac or similar meds? My dd was, but this was also post op protocol. I can’t remember what she was initially on but they transitioned to Zantac near discharge since it was cheaper insurance wise. </p> https://boards.hellobee.com/topic/nicu-help#post-2861692 Wed, 12 Dec 2018 12:55:04 +0000 QBbride 2861692@https://boards.hellobee.com/ <p>@lilyofthewest: oh no! It sounds like you guys are having a heck of a time. My thoughts are with you. I’m a NICU nurse so can weigh in, although every NICU is a bit different. </p> <p>In our NICU, babies have to take all feeds by mouth for 48 hours before being discharged. That’s frustrating they don’t do weighted feeds though. They should definitely count towards his calories. That sucks they are setting you up towards not breastfeeding, I would feel like that too. Honestly if your goal is to get home as quickly as possible, I would probably focus on bottle feeding since it’s measured and can count towards his intake and if he doesn’t have a ton of energy, bottle feeding will get you guys out quicker since it’s less work than the breast. Unless they’re willing to consider weighted feeds (I don’t see why they don’t do them?!)</p> <p>Having said that, have they discussed other methods of feeding? Like I’m assuming he’s being topped up with an NG active after taking 20% by bottle? Would they consider sending you guys home with an NG tube? Not ideal, but at least that way you can get home... and with the NG tube as backup, you can work on breastfeeding/bottle feeding at his own pace? </p> <p>As for the reflux, that’s a tricky one. Would they consider starting him on ranitidine or a PPI to help with his symptomatic reflux? So they won’t allow a wedge under the head of his cot/crib? What symptoms does he have, like does his heart rate/O2 sats drop on the monitor or they can just hear that he’s refluxing? Sometimes babies are extra reflux-y because their tummy is too full. If he’s gaining weight well, would they consider dropping his minimum fluid intake by a bit? (I don’t know what he’s at now but maybe down to minimum 140ml/kg/day and see if he still gains? Because a) it might help his reflux and b) it might make it a bit easier to achieve those oral feeds. </p> <p>Anyways, for now I would ask about:<br /> -dropping his minimum intake as long as he is still gaining<br /> -medicating his reflux<br /> -NG tube for home? </p> <p>Hope that helps. It sounds super frustrating, especially since there isn’t really a plan! Huge hugs, and feel free to ask me more questions! I’m happy to help if I can :heart:</p> <p>Oh also, I just realized he was born at 32+1. So he’s probably only like 35 weeks corrected? He might just need a couple weeks longer. Usually babies all of a sudden turn the corner with their feeds then there’s no looking back :shocked: but there is usually a pretty big difference between 35 weeks corrected and say, 37 weeks corrected. </p> https://boards.hellobee.com/topic/nicu-help#post-2861689 Wed, 12 Dec 2018 12:41:26 +0000 LBee 2861689@https://boards.hellobee.com/ <p>I have two babies that were close to me that were in the NICU (30 and 32 weekers). Both moms said they ultimately had to decide if they wanted to prioritize nursing or getting out. I know that isn't what you want to hear, but these moms were in two different (top level) NICUs and expressed the same sentiments. They said nursing exhausted their preemies as well as impacted the feeding goals. </p> <p>I also think that you need to forget what worked with your first son. Almost every NICU baby I know started with the every 3 hour schedule, got discharged, and quickly changed to more frequent feeds. Also both above mentioned babies went on to have successful nursing relationships. Just because something is one way right now doesn't mean that it'll always be that way. I remember my friend saying she was pretty much doing anything to get her baby home - even if that meant not stimulating him via holding him, etc. It was such a sobering statement.</p> <p>Good luck :heart: - thinking of you and your boy! </p> https://boards.hellobee.com/topic/nicu-help#post-2861687 Wed, 12 Dec 2018 12:32:02 +0000 Mrs Green Grass 2861687@https://boards.hellobee.com/ <p>I have a 25 wrecker and feeding kept us in the nicu past his due date. He also had serious reflux. Prevacid helped a ton with the reflux... The reflux caused him to have Bradycardia whole he was eating. He also got so tired! We were unable To breastfeed so I can’t help on that one. Do they have a lactation consultant in the nicu? I would think they’d want to work with you on breastfeeding if it is something you care about. I will say that it was extremely hard for me to let go of, but I had to because my son just couldn’t handle it...</p> <p>I wish you luck! I have a therapist friends that works with preemie moms (she was one herself) if you’d like to talk to anyone. </p> https://boards.hellobee.com/topic/nicu-help#post-2861668 Wed, 12 Dec 2018 11:20:36 +0000 crazydoglady 2861668@https://boards.hellobee.com/ <p>I don't have any advice, but just want you to know that you, baby boy, and your family are in my prayers and thoughts. ❤ Reach out to @qbride if she doesn't see this, she's a NICU nurse. </p> https://boards.hellobee.com/topic/nicu-help#post-2861666 Wed, 12 Dec 2018 11:11:07 +0000 lilyofthewest 2861666@https://boards.hellobee.com/ <p>I had my #2 on 11/22 at 32+1 by emergency c-section following a placental abruption. </p> <p>Tomorrow makes 3-weeks in the NICU with no real timeline for him to come home yet. He had a very bad first several days with persistent pulmonary hypertension of the newborn and a symptomatic patent ductus. </p> <p>The respiratory issues are much improved now...he was extubated 11 days ago, initially to c-pap, then high flow/high O2, then high flow room air, then low flow room air, now just wall O2 at 1/8thL. They'll send him home on O2 if needed.</p> <p>The challenge we still have is feeding. In order to go home, he has to take all of his calories by mouth for at least 24h. Right now he's taking less than 20% by mouth and that hasn't improved at all over the last week. Feeds are done every 3 hours and need to be completed within 1h to "count". </p> <p>They also say he needs to be able to sleep flat without having symptomatic reflux. </p> <p>I'm worried that with these criteria he's never going to be ready to be discharged. At least not if he's anything like my first kid. My #1 kid wasn't born until 41+5...and he strongly preferred to eat every 1h50m (and to spend 40-45 minutes doing it) until he was about 4 months old (at which point he "spaced out" his feeds to about every 2h30m and got a little quicker). </p> <p>My #1 also couldn't lie flat without symptomatic reflux until he was 6-7 months old!</p> <p>I'm concerned that these feeding goals feel like they are setting us up for breastfeeding failure. They don't do weighted feeds, so, anything he takes from the breast doesn't count towards his calorie minimum. Any time I breastfeed him (which he's actually doing well at!), if he takes less by bottle afterwards then he's not counted as making progress. </p> <p>This is a well regarded level IIIb NICU. Really frustrated. </p> <p>Any NICU alums or staff have any advice? </p>