Thursday, August 22, 2013

Feeding therapy successes

We had our third appointment today with the feeding therapist, and can I just say how much I love going there? A, I'm happy that we're getting help with Elsie's feeding issues. B, I love the therapists there. Ok, I've only met two of them, but they are awesome and I really like working with them. And C, each time we go there, Elsie does something amazing! Or at least, the therapists acknowledge that she is making amazing progress. I don't have much to compare Elsie's eating problems with, besides her 2 year old sister. I'm not familiar with any other infants with similar problems. But the therapists here see a myriad of infants and children each day, and so when they tell me that Elsie is doing amazing and that they are astonished by her progress, that makes me happy.

I've had a few people in our family talk to me recently that were surprised and unaware of Elsie's eating problems, so in case any one else is confused, at this point Elsie does not eat anything by mouth. She has not done so since the beginning of July. She receives all of her meals through her feeding tube. Her gag reflex is very strong and very far forward in her mouth, so whenever she attempted to suck via bottle or breast, the sucking would cause her to gag and sometimes vomit. During the last two weeks at home, we've been working with Elsie on being happy with things in her mouth, and reminding her that eating can be pleasant. In addition to rubbing her gums and playing little games with her tongue, I've been feeding her small amounts of banana or pear puree by dipping a pacifier or bottle nipple into the fruit and placing it on the tip of her tongue. Her gagging and vomiting has decreased quite a bit. She's still got a long ways to go, but she is improving. We attempted to breastfeed once after her last therapy appointment, but she gagged pretty quickly and I haven't tried it since. Too chicken, I guess.

At today's appointment, therapist Helene gave us some pointers on bottle feeding, and we practiced while we were there. Elsie needs "cheek support", which is gently squeezing her cheeks towards her mouth so that her little lips form a nice pucker. You see, it has been so long since Elsie has successfully drank from a bottle that she doesn't remember how to do it. She is re-learning how to eat with her mouth. When we gave her the cheek support, her lips puckered around the nipple like it is supposed to, and after a few moments, she began slowly sucking. She was very hesitant and very apprehensive, and kept looking to me and the therapist for reassurances, but she was drinking from a bottle without gagging. I was astonished. So was Helene. One of the goals that we established for Elsie's feeding therapy on our first appointment was that Elsie would someday be able to drink 5 milliliters of milk, either by breast or bottle. 5 mls. is not very much. It is a very small amount, but that was our hope, that she would someday be able to drink that small amount. Today during therapy, Elsie drank almost 15 mls. and didn't gag once. I'd say that's nothing short of a miracle. Yes, it took her a lot of time and a lot of support to do so, but she did it. We were thrilled!

Then we got greedy and after giving Elsie a break to rest and reorganize herself, starting spoon-feeding her some banana puree. She did awesome again until the end of our session, and then she got tired and gagged and puked up all the bananas. Ha ha, oopsies.

Even with the gagging and vomiting at the end, we were still thrilled with her progress. Helene said that most babies who had severe gagging issues like Elsie would show an aversion to the bottle, meaning they would see the bottle and start screaming and not let it anywhere near their mouth. Elsie's ability to keep trying to eat, despite the fear and pain of having gagged repeatedly on the bottle, shows her extreme resilience and determination.

Our homework for the next two weeks is to do two spoon-feedings with the puree per day, and at least one bottle feeding per day. Not that she'll be drinking an entire bottle during these feedings, not yet anyway, but we are practicing bottle-feeding and hope to increase the amount that she can tolerate. Someday she'll be able to drink an entire bottle, and that will be a noteworthy day :)

"See my tongue?"

We so love our happy baby!


  1. So happy to share your excitement about this accomplishment. Those pictures are extra cute!

  2. Not knowing how to eat seems so odd, doesn't it? For those of us for whom it came and continues to come easily, it's hard to get your head around. It's good to hear she's going to get the hang of it and will no doubt love eating as all of her friends and family do! She's probably just waiting till she's old enough to go straight for sour dough pancakes or rhubard bars! Smart girl! Oh, and really cute!!

  3. I updated my "Elsie wall" at work, and everyone loves her glasses!

  4. Such great news!! We continue to pray that Elsie will keep making such wonderful strides. We love all of you & look forward to seeing lots more of your wonderful family.
    Ps. Anytime you need help with the cows or anything else for that matter just let us know.