Our son has a tongue problem

jennbent · August 2012

I posted earlier this weekend about it being day 80 in the NICU. Our son is now 40 weeks and we just want to get the heck outta there, but one of the problems holding us up is bottle feeding. Simply put, he plants his tongue at the roof of his mouth and refuses to lower it for the bottle. Sometimes we can get around it, sometimes not. Usually the nurses can figure it out and get him to eat, but obviously we can't take nurses home with us to feed him, so this is something DH and I have got to figure out. The nurses say it's a preemie thing, and they try to give us strategies to get around his tongue, but it doesn't usually work. On the other hand, the speech therapist who's been working with him thinks it's an oral aversion thing. But she doesn't really have any strategies to get him to stop doing it - nothing that works anyway.

Usually what happens is we wrestle with his tongue for quite awhile and by the time we get it lowered, he gets tired and ends up falling asleep in the middle of the feeding after only taking 10 cc's. As a side note, we really haven't gotten to try nursing much because DS is severe IUGR and really, really needs the high cal formula to keep gaining. So I don't know if he would do it during nursing or not.

Has anyone ever heard of anything like this? I did a quick google search and found that's it's not uncommon. There are plenty of moms complaining about it, but really no strategies for how to deal with it. I'm terrified that we will get him home and we won't be able to get him to eat. Plus, the docs have mentioned that if he doesn't get it figured out by 42 weeks (next weekend!) then they will start talking g-tube. That deadline is really adding to the stress!!!

thishappyhouse · August 2012

My heart breaks for you because this sounds very familiar to what we went through. My DD was not IUGR but was a micropreemie so weight gain was a struggle. PLEASE don't worry about the g-tube talk yet and honestly I wouldn't even entertain the discussion from the Neos until 44 weeks adjusted. Many people told me that suck, swallow, breathe dis coordination and other feeding troubles can be accepted until 44 weeks as normal preemie problems. Mentally I was prepared to talk them into letting us be discharged with and NG tube at 43-44 weeks and working on things at home all to try to avoid the G-tube.

Sensory stuff- we were worried about this too... my daughter wouldnt even open her mouth and then would plant her tongue at the roof of her mouth. She ironically was a great breast feeder. Maybe you could try to put him to the breast during a tube feed? Will he take a paci? Does he suck on it? Id try to have the paci in his mouth as much as possible especially during tube feeds.

Remember... he is just at term now, we ask alot of these little babies . I know the panic feeling and its not a good one. Be kind to yourself over the next week or two.

jennbent · August 2012

Thank you both for your responses. I am so glad to hear this isn't something that's unique to DS.

Strangely, he drops his tongue every time for the paci. Maybe we will try giving it to him more often and see if it helps. I've always avoided giving it to him too much before feeds bc I worried it would tire him out.

Nurse today said he's one of the most difficult babies to feed that she's had in her entire 42 year career. She said the doctors are stumped. Not good!

jennbent · August 2012

thishappyhouse:
My heart breaks for you because this sounds very familiar to what we went through. nbsp;My DD was not IUGR but was a micropreemie so weight gain was a struggle. nbsp;PLEASEnbsp;don'tnbsp;worry about the gtube talk yet and honestly Inbsp;wouldn'tnbsp;even entertain the discussion from the Neos until 44 weeks adjusted. nbsp;Many people told me that suck, swallow, breathenbsp;dis coordinationnbsp;and other feeding troubles can be accepted until 44 weeks as normal preemie problems. nbsp;Mentally I was prepared to talk them into letting us be discharged with and NG tube at 4344 weeks and working on things at home all to try to avoid the Gtube.Sensory stuff we were worried about this too... my daughter wouldnt even open her mouth and then would plant her tongue at the roof of her mouth. Shenbsp;ironicallynbsp;was a greatnbsp;breast feeder. nbsp;Maybe you could try to put him to the breast during a tube feed? nbsp; Will he take a paci? nbsp;Does he suck on it? nbsp;Id try to have the paci in his mouth as much as possible especially during tube feeds.nbsp;nbsp;Remember... he is just at term now, we ask alot of these little babies ;. nbsp;I know the panic feeling and its not a good one. nbsp;Be kind to yourself over the next week or two. nbsp;nbsp;

Do you mind me asking what ended up happening? I know you're not in the NICU anymore so how did the tongue thing resolve itself? Nurse today kind of agrees that it just takes time, like what you were saying.

I stopped trying to bf because I thought I would just work on it when we get home. That was when I thought we were out the door two weeks ago. Also DS was a micropreemie too. 1 lb 3 oz at birth. He's just over 4 lbs now at term so I've wondered if I shouldn't just shelve my breastfeeding dream so he can keep getting his fortified bottles at every feed. He's got a lot of catching up to do.

Thank you for your kind response.

paige0328 · August 2012

I don't post very often, but our daughter has struggled with an oral aversion and there's a lot of problem solving involved. I'm so sorry you're going through this!

Have you tried a different nipple (perhaps with a different flow speed)? Is he feeding on the NICU schedule, or could you try ad lib feeding? I'd also see if you can try nursing, he might take to it well.

Good luck!

jennbent · August 2012

paige0328:
I don't post very often, but our daughter has struggled with an oral aversion and there's a lot of problem solving involved. I'm so sorry you're going through this!Have you tried a different nipple perhaps with a different flow speed? Is he feeding on the NICU schedule, or could you try ad lib feeding? I'd also see if you can try nursing, he might take to it well.Good luck!nbsp;nbsp;

We literally just talked the nurse practitioner into letting him feed on demand. So as much as he wants but no more than 4 hours between bottles. He drops his tongue if he's hungry enough that's for sure. We'll see what he does.

And yes we have tried different bottles. We started on doc brown w/ preemie nipple. I think that was too slow so we started trying different ones and are sticking with an evenflo level 1 right now.

thishappyhouse · August 2012

jennbent:
thishappyhouse:
My heart breaks for you because this sounds very familiar to what we went through. nbsp;My DD was not IUGR but was a micropreemie so weight gain was a struggle. nbsp;PLEASEnbsp;don'tnbsp;worry about the gtube talk yet and honestly Inbsp;wouldn'tnbsp;even entertain the discussion from the Neos until 44 weeks adjusted. nbsp;Many people told me that suck, swallow, breathenbsp;dis coordinationnbsp;and other feeding troubles can be accepted until 44 weeks as normal preemie problems. nbsp;Mentally I was prepared to talk them into letting us be discharged with and NG tube at 4344 weeks and working on things at home all to try to avoid the Gtube.Sensory stuff we were worried about this too... my daughter wouldnt even open her mouth and then would plant her tongue at the roof of her mouth. Shenbsp;ironicallynbsp;was a greatnbsp;breast feeder. nbsp;Maybe you could try to put him to the breast during a tube feed? nbsp; Will he take a paci? nbsp;Does he suck on it? nbsp;Id try to have the paci in his mouth as much as possible especially during tube feeds.nbsp;nbsp;Remember... he is just at term now, we ask alot of these little babies ;. nbsp;I know the panic feeling and its not a good one. nbsp;Be kind to yourself over the next week or two. nbsp;nbsp;
Do you mind me asking what ended up happening? I know you're not in the NICU anymore so how did the tongue thing resolve itself? Nurse today kind of agrees that it just takes time, like what you were saying. I stopped trying to bf because I thought I would just work on it when we get home. That was when I thought we were out the door two weeks ago. Also DS was a micropreemie too. 1 lb 3 oz at birth. He's just over 4 lbs now at term so I've wondered if I shouldn't just shelve my breastfeeding dream so he can keep getting his fortified bottles at every feed. He's got a lot of catching up to do. Thank you for your kind response.

First- try to ignore the nurses/docs that are alarmists... I hardly imagine it is the worst she has seen in whatever number of years. They are full of bologna.

We started getting really worried around term. My DD was showing some oral aversion like I described before and was also having horrible choking episodes. She couldnt handle the bolus that she was getting from the bottle, hence why she did better and was more eager to BF. These babies are smart they dont want to do what they dont like.

At 39-40 weeks they did another brain MRI to rule out anything neurological, chest xray and blood gas/ lites to make sure respiratory wasnt involved (she was off oxygen and diuretics at that point but they thought that maybe hthey had pushed her to far), a swallow study to be sure that the mechanics were all good and rule out silent reflux, and an endotrachial study to be sure that was all good (she didnt cry much so they were concerned about damage or paralyzed vocal chords from her long intubation)

After all that came back good, she really just needed time. She sorta "woke up" at 41 weeks and for the first time was waking for feeds/fussing and at 42 weeks got the hang of the bottle. Force feeding babies is no fun so when she finally decided she was hungry things got easier.

Going ad lib helped her, as did trying different bottles. Have you tried a haberman bottle? Its meant for kids with cleft palate and really was only helpful when the nurses were really comfortable with it, but I do think it helped her get over the hump.... def not a long term solution though.

2Momtoo · August 2012

Sorry I don't have time to read all responses so I might be echoing what others have said...but a few tips...

1) Go to ad lib feeding (feed when they seem hungry)

2) make sure you have a nurse that knows LO

3) if all else fails ask for a PEDIATRIC GI to come in and consult.

What happened with us was the insurance was pressuring the hospital to discharge around 41 weeks. They tried to get us to put in a G tube and I said absoultely not, she just needed more time.

4) The compromise was an ng tube (through the nose) and a fewm ore days. Ours figured it out before the NG tube went in. Also once home for a few days we figured out she had acid reflux and went on meds for a few months...Hope that helps!

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