Lack of suck/swallow/breathe cordination & "weak" suck

[lilmomma83]

Just updating- We saw a pediatric GI and started supplimenting with a hypoallergenic formula mixed to 24 calories and adding some to whatever expressed milk I can pump, and still putting her to breast every feeding I was with her. He suspects dysphagia and wants to get a swallow test done along with a cystic fibrosis test done she also dropped quite a few percentiles (prior to seeing the GI). We also got her on meds for reflux.

All of that combined with seeing a LC and her transfering very little milk, made me concerned...definitly things were getting worse. I was able t osee a different IBCLC (4th one!) who confirmed that she still had a posterior tongue tie and started us on some exercises to work on strength etc.

We did some craniosacral therapy, then went to Dr. Kotlow and had her tongue tie revised again (he said it looked like nothing had ever bee done to it in the first place...crazy!) and did some more craniosacral therapy afterwards.

We have not checked how much she is transfering yet (she lost some weight, so we are going to test that on Monday - could be because she got a bit sick last week though). But she is latching on SO much deeper than before, she can stay on longer, She seems happier at the breast and we are continueing the exercises and going to see 2 different feeding specialists to see if they have any other ideas on strengthening her suck - I think it will take a little while to retrain her and build up full strength (she seems orally delayed in other areas as well - tongue thrust etc) but she has improved more in the past 2 weeks than she had in 5 months...we can actually enjoy breastfeeding now!

I'm not sure if I will do the testing...maybe the CF testing just to be safe (but I really think the reason she was not gaining was that she was burning way too many calories sucking and swallowing) I will probably skip the swallow test because Dr. Kotlow says that dysphagia can be caused by tongue tie which she doesn't have anymore (and let me tell you - he took it ALL, I am shocked how different her tongue looked after seeing Dr. K compared to the ENT we went to).

Things are sooooooooooooooo looking up!!! She's just over 5 months now, I never imagined we would make it to 5 months...I didn't even know if we could do 6 weeks...I now think we will probably continue for several years! I c0ertainly think we still have challenges...but I truly believe the worst is behind us. :-)

[e_roehm23]

That's great news!!! Congratulations!!

[Connor]

Oh yay!! Glad things are improving for you

[lilmomma83]

Thanks...and we checked yesterday and she transferred 3.5 ounces - which is AMAZING for her...especially sicne it was only in 15mins and she was fairly distracted during the feeding! :-)

[songbird516]

That's great to hear Your efforts are really being rewarded!