Hellobee Boards

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.

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.

@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