If you have been around our family in real life at all, you know that Kaylen is a bona fide “bubba” addict. She is rarely seen toddling around without an 8 ouncer attached to her hand and/or mouth. She is co-dependent upon the bubba’s co-hort, bobbie (a fleecy blanket with ribbon tabs on it) – and watch out if she is missing one or both of these items at naptime. Yowza.
And when they first told me that Kendall could not eat from a bottle for a while, and they were worried that she would “lose oral-motor memory and skills”, I laughed. one of my children? lose the ability, love and desire to drink from a BOTTLE???? Hardly. My deepest darkest mothering secret: Kealey drank from a bottle until she was FOUR YEARS OLD. FOUR. Karissa’s age. My lord the child could write her own name and STILL needed the bottle to function! Kaylen is, you know, still within the BALLPARK of normal at least to still have the bottle, but she shows no signs of slowing down on that addiction.
all of that to say – we are adding one more Atkinson child to the bottle addict headcount.
Today at her therapy appointment/Endoscopy, she got her first taste of the “bubba” in almost exactly 2 months to the day –and BOY was she a champ! She downed an ounce and a half before she took a “respiratory pause” – meaning she latched on to that thing and ate like it was literally going out of style – i think she knew, oh my gosh! they might take this away at any moment i better get in all i can! It was hilarious to watch her. intriguing too, to see it all happening on a video screen, watching her esophagus stay open and her airway close and thinking – how AMAZING this body is that God gives us! Her doctor and therapist were dumbfounded by how extremely well she functioned, given all the horrible diagnoses she had two months ago with regard to her oral prognosis. They had a chart hanging on the wall listing the levels of dysphageal severity (how bad you can’t swallow). Kendall was at the worst level on February 26 – Severe Dysphagia. Oral feeds were literally dangerous to her wellbeing. Today she was a level 1 – mild risk for aspiration. Never doubt that God is alive and well and answering prayers EVERY DAY of our lives! Cause I saw it happen before my eyes today!
Her doctor and therapist were SO shocked by how “beautiful” her scope looked – they kept saying, you don’t GET footage like this from an infant! So chalk one up for the NG tube – because she is so “used” to the NG tube in her nose, she couldn’t have cared less that there was a long thin CAMERA down there – she just wanted the yummy blue milk! (They have to color it so it shows up on the video screen – i cannot WAIT to see what pure food coloring comes out like in her diaper! I might take a picture of it and post it on the blog so you ALL get to share in the fun and joy!) Anyways – they were so impressed with her footage that they may submit it to a medical “you-tube” like site because it was so Oscar worthy apparently. Go Kendall! A bottle addict and a movie star! well, at least your epiglottis is…
It was almost shocking to hear the news – this baby just needs to EAT – give her a bottle! What? just like that? no more tube?
Not quite. Her stomach is still not used to taking a full feeding all at once, and given her reflux issues anyways, we have to be careful to ease her into it. She gets pretty tired because of her hypotonia, so it’s going to be a battle to get her calories into her every day. For instance, today she has only taken 10 total ounces by mouth, and she needs to be closer to 25 –30 ounces for the day. So I’ll still have a LOT of tube feeding to do. But for large chunks of time we can take that yucky tube out! I can walk around with my baby and not push a bulky pole in front of me with one foot!
It was absolutely amazing wonderful miraculous news to receive today.
And in true Kendall fashion, one problem doesn’t disappear without a new one cropping up in its place. While we were sitting there waiting for the endoscopy to being, i was rubbing her belly and noticed that it felt really, well, WEIRD. I had the therapist feel it and she noted that yes it seemed extremely odd, so we had a nurse come in and feel her. She lifted up kendall’s onesie and i about screamed out loud. It looked like she had swallowed a live wriggly octupus and it was trying to escape through her belly. SO GROSS!!! The nurse felt it was probably a bowel loop (???), and that since Kendall wasn’t screaming in pain, it probably wasn’t an emergency, but I should definitely let the doctor know about it. Of course. Cause what would a day be wtihout some RANDOM medical mystery popping up in my child?
So we called Dr. A – and he offered to let us come in and be admitted for testing, but I felt like we could probably wait till our appointment tomorrow afternoon and he can observe the dancing octupus for himself. As long as I keep her clothed that entire time and don’t have to look at her randomly grotesque belly, I should be good! gross gross gross. I will say, the octopus-like movements did seem to calm down once she pooped, and then went away completely when her belly was FULL of a bottle of milk. So who knows. Just chalk it up to yet another Kendall-ism. Maybe that’s what she has. Kendall Disease.
so anyways – all around a great day.
Thank you so much for all your prayers for today! I know they are what we needed and I know God was hearing them. So while we still have a road ahead of us to climb with this kid (namely, she needs to GAIN WEIGHT!), we are well on our way today. hopefully tomorrow we’ll be able to figure out what kind of 8 legged creature is residing in her belly without going inpatient, and then next monday the new specialist will hopefully have some more insights to shed on her situation. Till then, we just keep moving forward.
I hope you all have a very good day, and don’t forget to hug your kiddos.