Baby never learned to swallow

I'm hoping parents who brought their LO home on the NG tube will see this. My daughter hit her due date never learning to eat properly so we brought her home on the NG tube. Now she is 2 weeks past her due date.

She passed her swallow study and a couple days ago they scoped her throat to check for things like floppy larynx. Everything has come back normal but one thing we saw on the camera they put down her throat is she is still not swallowing. There was a boogie just hanging out right on the edge of her esophagus and despite having a tube AND camera down there she never swallowed or gagged.

My husband and I have tried everything we can think of as far as changing positions, checking nipple flow, and we even tried feeding her w/o the tube down her nose. Sometimes she will get a rhythm going but after 10 MLs she starts losing that and goes back to not swallowing. Instead she sucks, breathes, sucks and then spits the milk out.

I have no idea what to do anymore and the therapist/pathologist that we're supposed to see is dragging their feet. Please has anyone gone through something similar, I'm terrified she start growing an aversion/dependance.

Re: Baby never learned to swallow

  • Sorry I've been off the boards for a while, not sure if my situation can help but this is what we went through. We had to get our daughter to eat for 3 days without the tube before taking her home from the NICU (after 45days). Policy would not let us take her home with the tube but it was a STRUGGLE to say the least. My daughter had cranial nerve palsy #7 affecting the muscles in her face (kinda like a stroke/due to her twin placement in womb) She also has laryngo malacia (floppy larynx). We did the scope and barium "cookie swallow" study. She struggled with suck-swallow-breathe pattern and latching. We also went to a feeding clinic of several doctors at the local childrens hospital, HIGHLY RECOMMEND CHECKING INTO ASAP(It was a team of doctors and therapists, wish we would have known about it sooner). We started off by adjusting her feeding times from 3hrs to 4hrs the doctors wanted to make sure she was hungry. After trying every single nipple on the market, the best ones were the disposable ones from the hospital, also they come in the premix gerber drink packs (we collected them like crazy and asked friends too). We had to add calories and also started adding oatmeal/rice, they found she swallowed better if it was a heaver mix, we then had to adjust reflux meds so check with your doc. The docs don't advise to cut into the nipples but the cross cut was not enough and she didn't have the motor control or the strength to suck, so we had to cut a corner off of the cross cut and 11 months in that's still the exact set up we use. Another thing we learned in the NICU and the feeding team gave us more advice on was pace feeding. She tired easily so you had to feed her timely, but if she drank too fast she choked if we removed the nipple for her to take a breath she struggled with re-latching. (Ill try to describe it as best as I can) We placed her on a pillow at a 45 degree angle, back straight (no slouching in a boppy, we used a firm tempurpedic pillow) we placed the nipple in her mouth for her to latch, we tipped it up so milk flows into the nipple and let her get 3-5 sucks, then we tipped it down, keeping it in her mouth but letting the milk flow out of the nipple to signal for her to breathe. If we took the bottle out of her mouth, she would spit the milk out or close her mouth and start choking. By keeping the bottle in her mouth she didn't have tongue function to be able to close her mouth or spit therefore gravity helped her swallow. They said the contributing problem was the weakness in her tongue and facial muscles. It took months to get it just right and we still struggle with each new feeding milestone and have added on a speech and feeding therapist but she's a happy 19lb 11mo old so Id say she's eating just fine. If you have any questions message me, Ive been there, it can be rough especially in the middle of the night but just keep at it.
    **********SIGGY WARNING**********ALL WELCOME**********


    Me:31   DH:32   TTC:5+ years  Twins:via IVF 5/21/2015  TwinlessTwin/Angel Baby:9/14/15  Fur Babies:2
    Struggled with infertility, hubby was in the military. TTC since Jun08 (on and off due to deployments, training, and relocating). We did the "white dress" wedding Nov09. Hubby came home, medically retired USAF July, 4th 2010. OBGYN#1
    Oct10-Dec12: All paps and exams normal, TTC naturally, tracked OV,CM,BBT. OBGYN#2 Jan13-Sept13:Second opinion, tested everything, Several rounds Clomid50mg, all BFN. Laparoscopy for Endometriosis, Cysts removed, Tubes untwisted, HSG clear, Scarring left ovary and tubes. Jan14-Aug14 Cycle of Lupron, Several more rounds of Clomid 50mg all BFN. Began IVFSept14-RE in CLE:) CD1(9/28). Stimming began 10/1 Microdose Lupron Protocol (150Follistim/AM,150Menopur/PM,20Lupron 2xDay). 7follies(right) 3follies(left). Trigger 10/10(10,000HCG). ER 10/12(5R,4M,4F). ET 10/15 Transferred two perfect Embies(8cell/9cell). Beta #1(14dp3d/4w) 362 BFP/Beta #2(21dp3dt/5w) 8,273/First Ultrasound(6w4d)11-12 confirmed twin pregnancy. Ultrasound Jan15 G/G di/di twins. PROM 33w4d emergency C/S. BabyA:3lb12oz,18in (45dayNICU), BabyB:4lb5oz,17in (30dayNICU). Lost BabyB to SIDS 9/14/15. BabyA is my whole world but struggles in the 1% delayed development, with many other health problems.

  • Our daughter was born at 32 weeks and she was given a soother, dummy, straight away. She wasn't allowed home until she could swallow, breathe by herself and maintain her temp outside the incubator. Did they give you a soother? If not try that but please go back and see someone 
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