Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Monday, April 9, 2018

Tubeless

She's a hungry sweetheart.
It has been a little over 3 weeks since Hannah's surgery. At 9 days post-op she started taking a bottle and 11 days post op her tube came out for the last time, although we didn't realize it would be the last time.  She has been tubeless and has been getting all her food orally ever since and is gaining weight beautifully!  She will take three to four ounces at each feeding. What a miracle! She's getting plenty of calories and is finally filling out with chubby cheeks and plump thighs.

She prefers to sit almost
straight up while she takes her bottle
She has gone from the 5th percentile for weight on surgery date, to 15th percentile after a week and a half, and now she's in the 23rd percentile!  She has outgrown all of the newborn sleepers and is wearing 3-6 month clothes now. Hooray! It's incredible!

She has also grown a lot developmentally in the past few weeks.  When she had the tube, she didn't get much tummy time because it was so easy to pull the tube out and it was literally tying her down positionally.  Since becoming officially tubeless, she has more freedom to move around and she doesn't hate tummy time anymore.  She is able to lift up her head much better than before and is rolling over from her front to her back! She seems to really enjoy the change of scenery and the ability to move more freely. 

You can see the incicision site
on her neck here, healing very nicely.
During the day, Hannah is incredibly peaceful and happy. Once she is changed and fed, she is very content to sit in her vibrating papasan chair and watch wide-eyed the goings on (aka chaos) happening all around. She will chill there for over an hour at times without a peep.  She always returns a smile when we engage with her. She likes having something to look at such as a mirror, toy, or mobile and she is starting to reach for things. She can almost get the binky to her mouth. She loves peek-a-boo, especially with her big brother. We can almost get her to laugh, too!

Hannah is still sleeping incredibly well at night. She usually sleeps from 8 to 10 hours every night!  Sometimes she gets fussy around 4 or 6 a.m. and will take a bottle and go right back to sleep. She still loves the binky of course. 


Hannah and I have been going to Riverton weekly to see her feeding therapist.  Last week we were working on strategies to try to nurse again. Hannah has established a safe feeding regimen with her bottle, but I would really love to nurse again if possible, and I feel confident that Hannah will, I just don't know how to get us there!  Kristin gave me some ideas, but Hannah just isn't interested yet.  She arches her back and pushes away and cries if I try to get her to nurse.  Before each bottle, I try to see if she will latch on, but three strikes and I have to stop trying. We don't want to reinforce negative stimulus and cause the aversion to get worse or be traumatic. I'm determined to keep trying though. Maybe at some point I will a have to accept that it will never happen, but I'm not ready to throw in the towel yet. It would make life so much easier for me and save so much time to feed her directly than to pump 4-5 times a day in addition to bottle prep, bottle feeding time, and then washing all the supplies. 

Having no tube has made life so much easier for Hannah and for the rest of the familyIt's so much easier to go places. And with Spring finally here, we are able to leave the house more and not have to worry so much about getting sick. I felt like a hermit all winterWe finally took Lexie and Hannah to church yesterday; a whole family of 7!
Church from 1-4pm is so hard!

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