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

  1. BandDmommy

    pomelo / 5660 posts

    @littleredhairedgrl: Hope everything is okay!

  2. blackbird

    wonderful grape / 20453 posts

    Oh gosh how stressful I hope you get some answers soon

  3. MrsRcCar

    grapefruit / 4712 posts

    @littleredhairedgrl: Hope your little girl is doing well.

  4. singingbee

    pomelo / 5073 posts

    Hope you get some answers!

  5. jhd

    coconut / 8079 posts

    @littleredhairedgrl: Thinking of you. I hope you are getting some answers and help.

  6. littleredhairedgrl

    persimmon / 1135 posts

    thanks so much for all the support! it's been so helpful to us while going thru this (on Christmas no less!).

    after a long night and all but one ounce refused, we had a nutritionist, feeding specialist and GI in with us today and they ruled out an oral motor issue since she is able to suck and swallow and they are going to do a scope to check things out further to see what is causing her discomfort and ultimately refusal. since it's the holidays it will unfortunately be next week or the follow and in the meantime they've put in an ng tube and she is finally getting some milk now. tho the insertion of the tube killed me. she cried for almost an hour and I've never heard her like that before. she is asleep now and calm but boy was today tough.

    I hate hate hate the fact that she has the tube. It feels as if we are back in the NICU and has been very tough to accept (not sure it's all completely set in yet..). I'm not totally comfortable with it all but I know that she needs to get nutrition somehow and I'm coming to terms with the fact that this will help and doesn't mean that dh and I are not doing all we can for her. I'm also worried about others making comments and am already planning on backing out of a few commitments next week because I don't want to deal with what people may say. I know I shouldn't care but I can't help it, and with all the unsolicited advice that comes along with being a new parent I know it will come. but I need to keep telling myself it's temporary and will help her in the end.

  7. jhd

    coconut / 8079 posts

    @littleredhairedgrl: I'm sorry you are going through this and that the holidays mean a delay in getting everything figured out. Be confident that you are the expert on your sweet baby and try to not worry about what other people think or say.

  8. Mrs. Jacks

    blogger / pineapple / 12381 posts

    @littleredhairedgrl: It's temporary and will keep her gaining and growing while they figure out what's going on. I'm sorry that it feels like a setback, but keep your eye on the prize... You will get there. It may feel like forever, but hopefully it won't take very long. As far as what people say, I'd just let that go as soon as you are able. The stronger she is, the better able she'll be to get back to oral feeds

  9. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    Just saw this! How stressful. As I was reading through I was thinking a swallow study would be good, I'm glad they did that. Have you tried formula?

    My son (15m) has a g tube feeding tube (placed at 8w old). I know tubes are hard and feel unnatural, but I hope you can see it as a blessing for the relief it can give you and her, the assurance of the calories without the fight, etc. I hope with all my heart that you and the docs figure out the problem soon. If this becomes the new normal for you, please reach out to me, I have a lot of advice for feeding tubes. Big hugs mama, hang in there.

  10. Mrs. Deer

    blogger / persimmon / 1231 posts

    @littleredhairedgrl: just catching up on this thread. I am so sorry you're dealing with this! After dealing with MSPI and some oral issues with both babes I know that feeding your child can seriously be one of the most stressful things ever! You have been such s trooper to be so diligent and work so hard. I'm sorry you guys had to get admitted and get an NG placed, but hopefully this will lead to some answers and a strategy going forward.

  11. spaniellove

    honeydew / 7916 posts

    @littleredhairedgrl: After what you guys are going through, the quiet time may be welcome. Most people have no idea what it's like to care for a LO with needs out of the ordinary, so whatever you have to do to tune out the advice or just avoid it during this difficult time would make sense. You are doing an amazing job being A's mama and giving her everything she needs.

  12. Orchid

    clementine / 927 posts

    @littleredhairedgrl: I'm so sorry you're going through this! It does sound like you are on your way to answers though! Hugs!

  13. Mae

    papaya / 10343 posts

    oh gosh I totally missed this because I was offline for most of the holidays but I am so sorry to hear this development! What a crappy way to spend your first Christmas together I'm so happy that people are finally really trying to help you figure this out though! Fingers and toes crossed that they figure it out sooner rather than later

  14. littleredhairedgrl

    persimmon / 1135 posts

    thanks all! just an update: we were discharged yesterday afternoon and given instructions to do continuous feeds during the night so she will get her caloric needs from 6pm to 8am at rate of 40ml and hour for the 14hrs.

    once we got home she was a bit fussy so we tried giving her a small bottle orally and she took almost 3oz awake and with the light on and some music playing which was really great! after that we didn't push any more oral feeds and began her first tube feed and she is currently still going and sleeping well thru the feed. she is still getting my milk too which I am very happy about.

    pretty nervous still about the whole thing and about making sure she doesn't pull on the tube but so far she's doing great and we are just hoping to get the scope scheduled for as soon as possible to get to the bottom of the issue and fix it and get the tube out. but for now this is what she needs.

  15. Pumpkin Pie

    persimmon / 1431 posts

    @littleredhairedgrl: just wanted to let you know that I'm thinking of you and your family.

  16. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @littleredhairedgrl: yay for those 3oz and being home!

  17. spaniellove

    honeydew / 7916 posts

    @littleredhairedgrl: Glad to hear you guys are home and she's getting the nutrition she needs!

  18. teawithpaloma

    apricot / 490 posts

    @littleredhairedgrl: Thanks for the update! I've been thinking of your family all weekend. Let's hope the upcoming appointments get to the bottom of the issue soon and a quick and speedy recovery!

  19. lady baltimore

    persimmon / 1196 posts

    Glad to hear you all are home! It stinks that sometimes it takes a crisis to get the ball rolling, but at least it sounds like you may be on the path to getting some help now.

  20. MrsRcCar

    grapefruit / 4712 posts

    @littleredhairedgrl: I am glad you guys are home! Hope you get some more answers soon. Big hugs momma and look forward to the future. This is only temporary.

  21. Mrs. Jacks

    blogger / pineapple / 12381 posts

    That sounds great! I forgot to share the continuous feeds overnight option. Great idea.

  22. littleredhairedgrl

    persimmon / 1135 posts

    @Mrs. Jacks: thanks yeah they put us on the continuous but now they are saying we should be on more of a regular schedule where we feed her and whatever she doesn't take we run thru the pump. not sure what the better option is but we are just so tired of this practice giving us so many different opinions. just tell us what we should be doing and how to make it so we have the tube for as short a time as possible. urgh

    yesterday we went for a weight check at he GI and while she didn't gain, she hadn't lost after those days of taking nothing which I was ok with. but while we were there A pulled the tube out of her nose and had it in her hand! so the nurse practitioner (who dh and I really don't like) put it back in and brought a nurse to check the placement. A was screaming like crazy and the nurse must have pushed thru 5 10ml syringes of air to check and finally told us the tube was in the right spot. A was still screaming and coughing and vomited up a huge ball of mucous and they told us it was because she was crying a lot (which I knew wasn't right) and they told us to go home. we went home and before it was time to run the pump we checked placement and couldn't hear the air going thru and A had vomited again so we went to the ER where they confirmed that the tube was coiled up in her esophagus. poor A had to get a new tube placed and all because the NP rushed thru trying to put it in. I left an angry message with the office this morning and the nurse returned my call with a voicemail saying that she knows she did it correctly and that maybe during our car ride home the tube came out and coiled in her throat?! is she serious?!! needless to say I am livid and refuse to see her again. I know mistakes are made but admit to it and apologize. sigh.. my little one just needs a break

  23. Mrs. Jacks

    blogger / pineapple / 12381 posts

    @littleredhairedgrl: geez! Mama definitely deserves a break!

    So if you are doing the continuous overnight thing, I'd just make sure that you stop the feeds early enough to give hunger cues at normal feeding times during the day. Continuous doesn't give the same contraction and expansion of the stomach to provide adequate hunger cues. So normally folks will give a minimum for each feed and tell you if she doesn't meet that goal to gavage the rest. But as I tell my residents, there are a million ways to feed and you have to find the ways that work best for you. The same holds true for you. No one will know your daughter like you... And you will become her feeding expert!

  24. Espion

    pomegranate / 3577 posts

    @littleredhairedgrl: Coiled in her throat on the ride home? I can't contribute anything worthwhile for your baby girl, but I can tell you that that is some serious BS. I'm sorry you had to go through that, mama.

  25. Mrs.Panda

    nectarine / 2358 posts

    @littleredhairedgrl: coiled in her esophagus during the car ride? Are you kidding me? Bad practice, right there. I'm sorry you are going through this wish I had some advice... I'm actually going to be starting a new position on a pediatric GI floor next month so seeing how families are effected by this has been eye opening. Again I'm sorry this is so frustrating and I hope you all get answers soon.

  26. spaniellove

    honeydew / 7916 posts

    @littleredhairedgrl: That is so awful and infuriating the way they handled it. I'm so sorry you are having to deal with this and if it wasn't bad enough that A is suffering, that you have to deal with incompetence. Ugh. Many hugs to you, mama.

  27. MrsRcCar

    grapefruit / 4712 posts

    @littleredhairedgrl: oh my! I would have been livid as well!! They should be reported to the board. I can't believe they just tried to play it off. Big hugs momma. I hope you guys can rest soon.


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