how do I go anywhere with a baby who can only eat while sleeping?

By littleredhairedgrl Dec 24, 2014

getting so super anxious about traveling to friends and family houses over the next week for the holidays..

A right now will only eat while asleep and has been refusing a lot lately and taking less milk all together. I really don't ever leave the house because she eats 7 times a day and I have to put her down before each feed so she is asleep during the feeding. - Been in touch with all her doctors about this and that's another huge issue but basically since she's still peeing and making tears and drooling they aren't too concerned, tho I know we are creating a bigger monster by not teaching her how to eat while awake or addressing her aversion. Reflux meds can only do so much..

Anyway, any advice on how to travel with a baby with these needs? I want to be able to at least somewhat enjoy myself and my family but I find that all I am worried about when I'm out is how the next feeding will go..

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66 comments

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katsupgirl
nectarine / 2280 posts

Dec 24, 2014

How old is your little one?
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@katsupgirl: she's 7 months (5 corrected)
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

and today has been so bad already. she completely refused a bottle this morning and again just now. I am so so upset and now most likely backing out of our plans tonight and will prob tell dh to go and I'll spend the night alone.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

she glues her tongue to the roof of her mouth and won't bring it down once the bottle is near her face. even while asleep. and will just let milk pool in her cheeks and just when I think she took something let it all pour out at once. no crying, no arching, just doesn't ever want to eat. never shows signs of being hungry or at all interested in milk.
Mamasig
pomegranate / 3565 posts

Dec 24, 2014

I don't really have any advice but just want to send good thoughts your way. This sounds so incredibly stressful and isolating. I hope things improve for you and your LO.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@Mamasig: thank you! it is so hard I just wish doctors would help.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

I don't go anywhere or talk to anyone or make any plans at all because it's so hard to plan ahead for all this and ensure that I will be somewhere where I am comfortable and she is comfortable enough to eat. dh and I fight all the time because I am constantly on edge and upset about this. I'm honestly losing it.
ellewoods84
kiwi / 728 posts

Dec 24, 2014

This does sound so frustrating! I wish you could find a doctor who could help. I don't have any advice, but I hope you guys can figure it out soon. I know some other HB members have had this issue though, so hopefully they can chime in with some advice!
Mamasig
pomegranate / 3565 posts

Dec 24, 2014

@littleredhairedgrl: I don't know all the background, but is there some kind if occupational therapy for this? If your gut feels like something is up, what about seeing another pediatrician?
lady grey
pear / 1696 posts

Dec 24, 2014

@littleredhairedgrl: oh gosh this sounds so so stressful and you must feel so isolated since you can't really go anywhere. I would def get a referral of a pediatric OT (or sometimes it's a speech lang pathologist) for feeding therapy asap. It doesn't sound like what you're doing now is livable.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@Mamasig: @Seattlemom: we have gone to a feeding therapist and she said A has reflux and is too young to have an aversion. I disagree considering what's been going on. And all our doctors don't want to step on each others toes so they end up not being helpful at all. it may be time for a new set of doctors after all..
Mrs. Jacks
blogger / pineapple / 12381 posts

Dec 24, 2014

Have the feeding problems been such that you've had a NG previously? If you had the supplies and training, could you drop the NG to get you through the holiday. If not, it seems reasonable to take her in to establish a workable feeding plan!
meredithNYC
pomegranate / 3314 posts

Dec 24, 2014

I have no suggestions, just lots of sympathy. Sounds like such a challenging situation and I hope you get some answers soon.
lady grey
pear / 1696 posts

Dec 24, 2014

@littleredhairedgrl: NG is a good idea if you know how to place one and have the supplies.

Is there another feeding therapist in your area you could see? Someone within the local pediatric hospital system who may see more premies and complex patients? Def time for some second opinions!
Mrs. Jacks
blogger / pineapple / 12381 posts

Dec 24, 2014

@Seattlemom: agreed!
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@Mrs. Jacks: we had one in the NICU but that was it. and she's never lost weight so it's never been suggested to get one. but her gain is so little that it concerns me. I wouldn't want to go that route but would like our doctors to be concerned enough to do anything more than what they are doing now.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@Seattlemom: yeah you're right. we got her evaluated with early intervention and I have to meet with them to discuss goals and frequency of therapy and I will stress working on the bottle aversion but I need to find a new set of doctors for sure.
Mrs. Jacks
blogger / pineapple / 12381 posts

Dec 24, 2014

@littleredhairedgrl: it seems that your current situation is impossible! They really need to take this more seriously. They are looking at weight and calling it "good enough", but you are making a heroic effort to make it happen. Mama needs a real feeding plan. I could get into details about the kinds of feeding plans I make for these sorts of problems, but I think the most important thing is to watch for signs of dehydration (less than three wet diapers a day, not making tears, sunken fontanelle) and take her to an ED if she does show those signs, while getting a gen peds, nutrition and OT appointment scheduled for as soon as possible. I'm sad for you that this is making the holidays so tough. Best of luck!
spaniellove
honeydew / 7916 posts

Dec 24, 2014

@littleredhairedgrl: If you can squeeze in your IFSP meeting I'd highly recommend trying to keep your momentum going with it. I've found EI to be tough to set up but a huge help. The therapists can be a great support in your home and listen to you talk - they're there for parent support.
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@spaniellove: right now it's scheduled for jan 13 and that's the earliest they could do with the holidays. we see our GI on the 8th and I'm going to stress the issues of putting a plan in place and see what she says.

also am going to look into finding a different feeding therapist. tho they are super hard to find.
Anagram
eggplant / 11716 posts

Dec 24, 2014

@littleredhairedgrl: My daughter had feeding issues (MSPI, which caused a feeding aversion I think) and she wouldn't drink a bottle awake until she was 10-11 months old.

But I first had to address the MSPI part and eliminate everything from my diet. Is your LO on formula?

I've been there, when the doctors aren't taking it seriously. Even my own family didn't understand what I was going through until I traveled to Georgia to see them and then both my mom (who has 6 kids and 8 grandkids) and my sister (mom of 2) tried feeding her and she didn't eat AT ALL.

And then I was like, so now you see what I go through every day. When I traveled, LO did eat less, but she would still usually get 12-18 oz a day and eventually she would get used to the new place and her sleep would improve (so I could feed her while she was sleeping).

At 7 months, my LO was taking 3 naps a day, so she got 3 bottles before each nap...then we gave her two bottles overnight--one at 1 am, and one at 4 am. It was the only way to get her over 18 oz a day.

Some time around 10 months, we dropped to 1 overnight feed and then by the time she was 11 months and I was ready to drop her night time feeds completely, she finally relearned how to drink awake.

Hang in there, mama. And don't be afraid to get second and third opinions!
littleredhairedgrl
persimmon / 1135 posts

Dec 24, 2014

@Anagram: thanks! I pump so she gets my milk and I've been on an MSPI diet (plus no seafood, nuts, eggs and beans) since August and the Drs eliminated everything at once so we don't even know what the intolerance is if there even is one. we also add polycal for extra calories and gelmix to thicken because she seems to like it a bit thicker. sigh.. it's so frustrating when others don't understand. next week I'm going to really work to get some doctors to listen and address the aversion because I just can't. she just refused a whole bottle again and now we are on the way to my in laws where everyone is going to say how she will eat when she's hungry and I'm going to tell them to shove it
daniellemybelle
cantaloupe / 6669 posts

Dec 25, 2014

This sounds horrible - I'm sorry

I don't know if this helps or if I am clueless, but my LO has always slept well in the car. Could you try to feed your LO while she sleeps in the car? That way she would hopefully have something in her belly and a few hours when you arrive somewhere.
MrsRcCar
grapefruit / 4712 posts

Dec 25, 2014

@littleredhairedgrl: sorry your stressed. Big Hugs and I hope they come up with a plan soon. Feeding challenges are awful. Don't worry what anyone else has to say ( I know it's hard because we face the comments too).
littleredhairedgrl
persimmon / 1135 posts

Dec 25, 2014

@MrsRcCar: thanks we are on our way to the ER right now actually.. only had 6oz in the last 13+ hrs. hoping to get some questions answered
spaniellove
honeydew / 7916 posts

Dec 25, 2014

@littleredhairedgrl: Poor baby - I hope everything goes smoothly at the ER and you finally get some answers!
jhd
coconut / 8079 posts

Dec 25, 2014

@littleredhairedgrl: thinking of you & I hope you get some real help. Hang in there you are doing an awesome job!
littleredhairedgrl
persimmon / 1135 posts

Dec 25, 2014

@spaniellove: @jhd: thanks ladies! we are still here and the doctor on call tried to have us give her juice and of course she didn't take it bc she doesn't want the bottle at all. they haven't done any sort of tests or anything and right now they are having her nap so that we can feed her while she's asleep. that's what we do at home so i don't know understand why they aren't doing more here. very frustrated
spaniellove
honeydew / 7916 posts

Dec 25, 2014

@littleredhairedgrl: Do you think they're trying to observe her normal feeding behavior first and then move on to other interventions?
Mrs. Jacks
blogger / pineapple / 12381 posts

Dec 25, 2014

@littleredhairedgrl: they are probably trying to do whatever they can to temporize and get you home, but dig in your heels because you've already given this heroic effort!
MrsRcCar
grapefruit / 4712 posts

Dec 25, 2014

@littleredhairedgrl: I hope they come up with a better solution. No way to spend a Christmas.
littleredhairedgrl
persimmon / 1135 posts

Dec 25, 2014

they finally came back and took blood and put in an iv. now she's completely passed out.
katsupgirl
nectarine / 2280 posts

Dec 25, 2014

I'm so sorry this is happening for you but I really hope you get answers today. At least she's getting something from the IV.
littleredhairedgrl
persimmon / 1135 posts

Dec 25, 2014

dr just came back they want to admit her and do an upper GI and swallow study. urgh what a way to spend her first Christmas but I'm glad we are finally getting somewhere
spaniellove
honeydew / 7916 posts

Dec 25, 2014

@littleredhairedgrl: I'm sorry, I know it's a lot at once and especially on Christmas. My fingers are crossed that this will lead to answers and help you guys make positive progress. Do you have everything you need for a stay?
Mrs. Jacks
blogger / pineapple / 12381 posts

Dec 25, 2014

@littleredhairedgrl: there we go. I'm glad they are taking you seriously!
MrsRcCar
grapefruit / 4712 posts

Dec 25, 2014

@littleredhairedgrl: Sorry this is how you has to spend your little girls first Christmas. I hope that the studies yield results for you. Big hugs momma.
Orchid
clementine / 927 posts

Dec 25, 2014

@littleredhairedgrl: I hope you get some answers soon!!!
Orchid
clementine / 927 posts

Dec 25, 2014

I hope you get some answers soon!!

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