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.

Friday, May 25, 2018

Out of the Woods


Hannah is officially 6 months old!  She has surpassed 15 pounds and is now in the 37th percentile, graduated to size 2 diapers, and is wearing 6 to 9 month clothes. She is chubby and plump just like a regular baby!  She learned how to laugh! She is really great at tummy time and is trying to move around, but she looks mostly like a beached seal, rotating on her tummy.  Pretty soon she'll be rolling like crazy and trying to crawl! She is getting better at reaching for things and trying to put them in her mouth. She mostly prefers to suck on her hands and her blanket and hasn't quite got the hang of getting the binky into her mouth without help. 


So far, Hannah is not interested in solid food on a spoon; she just spits it right out, with a disgusted look on her face. She still sleeps great at night and is generally a very peaceful baby. If she's tired, she cries and falls asleep.  If she's stinky, she cries and gets changed. If she's hungry, she cries and gets fed.  She is just not a fussy baby who cries for no reason. What a blessing! She is usually content in her bouncy seat or exersaucer so long as she can see all the action and craziness going on around her. She is used to lots of NOISE and sleeps right through it!

I have to set a mental timer to make a bottle every 3 to 4 hours because unless I keep track of her intake and start getting her bottle ready half an hour in advance, she will not get enough calories each day. Yeah, a day or a few days in a row of having a calorie deficit isn't a big deal; most babies will make up for it in subsequent days. But Hannah's "body clock" doesn't regulate very well, and if I didn't stay on top of this every day, she would plateau or even lose weight.  

Hannah is still on nectar thick liquids. She does okay but I can still hear wheezing in her lungs and throat most of the time. When you and I would normally cough to clear our throats, Hannah doesn't. When she does cough, it is delayed and not very effective. Having fluid in her airways could cause her to become sick at any time. I watch closely for signs of fever, trouble breathing, cyanosis, etc. I would not be surprised if she did become sick, although we are grateful for every day we spend at home rather than in the hospital. We have weeks where we worry more than other weeks.  Right now I'm only a normal amount of worried!

This is how we stretch.
In many ways, Hannah is just a normal, happy baby!  Most people have no idea that she was on a tube just 2 months ago, or that she had surgery, failed to thrive for a while and had several hospitalizations.  The tube was kind of a statement that announced to everyone we met: "we're stressed and going through a lot,  This baby isn't normal." At first, when we ditched the tube, I felt like I had to explain this to people, lest they think she was just a regular baby. But now it is refreshing to have people fawn over her and complement her cuteness and "those eyes!" without feeling like I have to qualify her existence with, "Yes, buuuuut...."  If the conversation flows towards a more personal discussion of newborns and her growth or feeding regimen, I simply say, "She had a bit of a bumpy start, but she's out of the woods now."  And if they want the whole story, I'll tell it.  I'm so glad I get to say that she's out of the woods!

1 comment:

  1. Keep up the good work. You're a rock star to keep Hannah-Banana fed amid the chaos of 4 other kids. We're rooting for you and Hannah.

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