How long did your NICU baby have feeding issues?

BigPoppa22 · June 2013

My LO was in the NICU for 30 days and has been home now for 6 week. Was not preemie but was intubated for 2 weeks and on an NG feeding tube the whole time. We took him off the tube a few days after he got home. He is still drinking less than he should (drinks 27 Cal formula to compensate), falls asleep during almost every feed and we struggle to get it down (I guess not that uncommon), but more importantly, his appetite is not increasing. He IS gaining weight, slowing down now, but the thought that he could drink 4 oz in one sitting seems like an impossible dream.

How long did your baby struggle with feeding, and when your LO transitioned, was it like flipping a switch or gradual?

Thanks!

BigPoppa22 · June 2013

Thanks. I'd love for more parents to chime in, it is encouraging to hear that (not to take pleasure in any difficulties anyone had, but to know that if he takes 2-4 months it is something others have experienced).

Cricket Bug · June 2013

My daughter was in the NICU for 2.5 months after being born at 28w3d. She has been home since March, and still has some choking when she gets too excited for her bottle. Her feeding issues were mainly to due with tongue position - she would keep it at the roof of her mouth instead of taking the nipple right in. We just had to keep practicing, and instead of trying to feed her with her tongue in the wrong place (it would be very difficult but possible to eat with it there) we would keep taking it out of her mouth and putting it back in until she lowered her tongue. Hope that helps!

brachysira · June 2013

My baby was born at 32 weeks and spent 10 days in the NICU. She could barely bottle feed when we left and the nurses were worried, but she started getting better at feeding almost immediately when we got her home. We only fed her 2 oz at a time, and we didn't stress if she didn't eat it all. We had to change her to wake her up and hold her away from us so she didn't get relaxed in order to keep her awake. At 5 months, she still uses the NICU-type nipples, which are rubbery--she can't seem to get a grasp on the silicone ones. After about 2-3 weeks at home, she was excellent at eating and we never worried. She picked up bfing about 3 weeks after that. She's a very hungry baby. The NICU nurses had a ton of tips that helped us in the beginning. Like PP, you have to get the nipple on top of the tongue. Put the bottle in further than you think. If you're really not having luck, get help.

Shepperd2 · June 2013

just posted a similar question! -- wish i'd looked through the msgs first.

My little girl was born 26w3d and has only been home since this last Friday ( at 39w3d). She's having a horrible time staying awake during her feedings too. I know her slow bowel is partially a problem...pooping is the hardest thing she tries to do. Not constipated, just struggles to push & relax at the same time, so her belly is full, she's tired from trying to push, and she's tired from traveling from dr appt to dr appt. I'm trying not to worry too much because I know that if she was really hungry, she'd eat. She has taken 3 oz at a time when she's slacked off on a previous feeding, but i'm starting to think she's not getting enough.

I'm glad to see that this is a common thing, but sorry for everyone else who's going thru it as well.

BigPoppa22 · June 2013

Sahara78:
Why was your son in the NICU? I wonder if that may be related to his feeding problems. I would definitely speak with your pedi about him drinking less than he should. DD was in the NICU until two weeks after her due date because of eating and digestion issues. She did suddenly go from drinking a few partial bottles to all full feeds within a few days. I guess she just had to be ready to do it.

My son has Meconium Aspiration that progressed to PPHN. Transferred to 3 different hospitals in the first 4 days because it looked like he might need the ECMO on the 4th day. Fortunately, before that final transfer team even got to him, he had stabilized and did not need ECMO! He was on the ventilator the first 4 days, then the high freq.oscillator for 4 days and then the CPAP for another 5-6 days and then stayed an extra 2 weeks after that because of the feeding issues. He also has reflux and has been on Prevacid throughout. He HAS made a lot of progress from there, I mean, when he left he was eating 40-50 ML and getting the rest down the tube. DW and I removed the tube a few days after he got home and now he will drink 70-80 every time and sometimes up to his full 90 ML (3 oz). But it is a struggle every single feed between him falling asleep after the first 30 ML to working through crying if he is not in the mood/tired/hungry, etc. Additionally, he is beginning to sleep better for a few chunks of overnight, so we have dropped from 8 feedings per day to 7 and have not been able to increase the amounts on the 7 so he is eating less overall.

He saw ENT twice in the NICU and there are no anatomical issues. He saw Speech and Swallow specialists about 5 times but honestly after the first two times where they said "Hold him like this and try the bottle like this, etc", we found diminishing usefulness and decided not to follow up after release except for one phone call. We have been going to a GI/nutritionist every 2 weeks who our pedi defers to for how to proceed. The GI basically says there are no formula issues, he is gaining weight, and that we have to remember that even though he looks healthy, he was very sick and still recovering digestively. She increased him from 24 calorie formula to 27 cal to compensate. She also said to not be concerned with growth charts and percentiles, but it is hard! He dropped from 85th percentile to 40-50, but I know I will not get any sympathy on the Preemie board for that ;-)

Everything the GI is saying, is of course, correct. I was just seeking encouragement that others have gone through this and that 2+ months to get on track is not totally unusual, nor is struggling through every feed. I am also very concerned that he gets enough food to grow and develop normally physically and mentally.

Anyway, thanks all for the input, it does put me at ease a bit. We will soldier on!

thishappyhouse · June 2013

Wow! What a scary ride you have had. Amazing that he was able to avoid ECMO

Given his gestational age at this point I would think that the "sleepy" problems at feedings should get much better. Is he on any oxygen at home? Does he have lingering respiratory issues from PPHN? He could be getting tired with feeds and if it is not getting better by now it may make sense to consult with his pulmonologist or cardiologist to talk about supporting him during feeds with some oxygen. just an idea.

Is he still on a NICU schedule? Maybe he would do better with ad lib feeds and just working towards a daily minimum.

Lastly from my antecdotal experience of kids post nicu it seems that the babies that were intubated closer to term tend to have more issues with oral aversions and feeding troubles. (Although many many micro-preemies do too) If you continue to struggle it may make sense to see a SLP that is very experienced with feeding issues early on so that you arent struggling with solids down the road.

MinaE01 · June 2013

My DS was born at 32w3d, and his major issue was feeding. He was in the NICU for 24 days. At discharge (36w adj.), he was taking about 2 oz (60mL) every 3 hours. He took forever to finish a bottle. Gradually, we increased his feeds to 2.5-3oz by the time he reached his due date. Every 3 weeks or so, we'd increase our feeds about .5 oz. By the time he was 4 months actual (2 adjusted), he was taking about 4 oz. Now, he's almost 8 months actual and he takes 6-8 oz. every 4 hours or do.

I won't lie. Feeding has been very frustrating. He has been a slow gainer, partly due to his acid reflux. He spits up ridiculous amounts of liquid all throughout the day! Plus, he's just not all that into eating. He's so distractible. Currently, he weighs about 15 lbs. He's on the low end for his adjusted age. I just have to accept that eating is a struggle for us. I try not to force it and get too frustrated, as DS is a very happy little guy. I would encourage you to do the same. Good luck to you!

BigPoppa22 · June 2013

thishappyhouse:

Wow! What a scary ride you have had. Amazing that he was able to avoid ECMO
Given his gestational age at this point I would think that the "sleepy" problems at feedings should get much better. Is he on any oxygen at home? Does he have lingering respiratory issues from PPHN? He could be getting tired with feeds and if it is not getting better by now it may make sense to consult with his pulmonologist or cardiologist to talk about supporting him during feeds with some oxygen. just an idea.
Is he still on a NICU schedule? Maybe he would do better with ad lib feeds and just working towards a daily minimum.
Lastly from my antecdotal experience of kids post nicu it seems that the babies that were intubated closer to term tend to have more issues with oral aversions and feeding troubles. (Although many many micro-preemies do too) If you continue to struggle it may make sense to see a SLP that is very experienced with feeding issues early on so that you arent struggling with solids down the road.

Nah from a respiratory standpoint, he was fine after the first 2 weeks. We are not officially on the NICU schedule anymore, but he generally still gets hungry every 3 hours, give or take 15-20 minutes, except when he sleeps for a 4 hour block at night and wakes up cranky.

You are right though, we may need to see another specialist soon to make sure he does not have lingering oral aversion or anything like that.

Thanks!

How long did your NICU baby have feeding issues?

Re: How long did your NICU baby have feeding issues?

Choose Another Board

Search Boards