Quick background since I haven't posted in while- my DD was full term, and born a good size (8lbs 10oz). We've had issues with weight loss and slow weight gain. We got her posterior tongue tie revised at 7 weeks and her lip tie revised a bit later...she's been tranfering milk well since then, but, still undergoing speech therapy for sucking because she still breaks suction a lot, gasps for air, has totally disorganized suck/swallow/breathe (no pattern at all). She has shown improvement in the length of her feedings at breast, but, the coordination and strength of her suck hasn't changed much (she is transfering more milk though and her tongue movement is better and lips are flanged more...she just still lets go a lot and pulls her head back - we think that is a seperate issue of her not sucking strongly enough to elongate my nipples - starting breastshields to help with that soon). She has shown slight improvement with a pacifier which we were told is a good sign, but, still a different suck...they just hope it improves her strength etc. (she has gone from 15secs max before it falls out to usually around 45 seconds, occasionally longer). Our speech pathologists suggested we see a particular feeding specialist they know of and also go back to the ENT for a full evaluation, including nasal passages etc. (when we went for the tongue/lip ties they only examined her mouth)...I have been somewhat undecided if I should do that or not, mostly from the sheer exhaustion of how many doctors and specialists we've been seeing for the past 3 months...each of them helping some and then running out of ideas...I do want to keep helping my little girl but now that she is gaining (slowly, about 2.25oz/week, but, she IS gaining) I am less concerned. I'm also feeling a bit like this my never get resolved entirely at this point...I guess I am just looking to see if anyone has had success dealing with lack of suck/swallow/breathe coordination and/or weak suck.
DD is 14 weeks. She is meeting her other mile stones and has good muscle tone. At this time we are not aware of any other health concerns, though, as I mentioned above we are considering getting a more thorough investigation of that. She is currently breastfed when I am with her and bottle fed when I am at work. She has all the same issues with bottle feeding as breastfeeding (she does not do well with either) I have chosen not to change her bottle nipple or anything because I want to preserve breastfeeding and not make the bottle "too easy" for her. As far as weight gain, I am also eliminating dairy - IBCLC suggested allergies could be causing malabsorbtion, we were fortifying feeds with a high calorie formula (just at daycare) but I may stop for a bit sicne it is milk based. I've already noticed a differince in DDs skin since cutting dairy, so hopefully that will help.
Any experiences and/or advice would be appreciated....I feel like my judgement on this is clouded from being so "tired" (emotionally). I'm also wondering if maybe there is some way I can help her get coordinated at home on my own? We are doing other therapies for her at home to imrove strength and mobility, but, nobody has come up with suggestions on helping her with her coordination (other than trying different positions etc which we are doing...it's helped me hold the breast in her mouth but has not changed her suck or coordination).