114 Days

Hannah was on the NG feeding tube for 114 days.  114 long, uncertain, exhausting days and nights. 

Today, July 19, marks 114 days since Hannah has been off the tube!  After surgery, Hannah was almost like a newborn again with regards to her oral skills.  She had to learn how to swallow liquids even though we didn't realize she was still aspirating, which had to be confusing for her.  Then she had to learn to swallow thickened liquids and trust that it really was safe to swallow after all.  She had to learn how to be hungry, and that taking a bottle resulted in her hunger subsiding (something we are still working on!).  It has been a challenge to get all of her calories into her each day. She is still on almost double formula because she just doesn't want to drink more than 10-15 ounces a day.  She should be getting 20+ ounces a day.  Most of the time she will stop drinking each bottle after just 1-2 ounces, and she can't be even a little distracted or she won't take it at all.  I can get her to drink a full 4-ounces only when she is asleep.  Eating when asleep is not ideal, but it does get the calories into her and helps her strengthen her swallowing muscles and practice the suck, swallow, breathe pattern.

Isn't this how to crawl?

Hannah has made incredible progress in just the last 3 weeks!  She learned to sit-up and rock on all fours and move around on her belly.  Hannah has had the least conventional crawl of any of my kids: her "all fours" meant two hands and two feet before she realized she could crawl on her knees. Silly girl! Now that she is mobile, she is getting into everything, and finally putting things in her mouth, something other babies do much earlier than 8 months old.   When my mom came out to Utah a few weeks ago, we noted that Hannah did not put things in her mouth at all.  And since then, Hannah has started exploring things with her mouth to experience their taste and texture.  She drools more and is finally accepting some simple cereal and fruit combinations on a spoon.  (I have been trying to get her to take solids for 2 months now!)  What an incredible transformation Hannah has had over the last few weeks!  July has proven to be the month of mobility, willingness to eat solids, and mastering the pincher grasp.

Hannah is still a pretty good sleeper.  I did "rock the boat" a bit and go on a road trip across the country!  Being in a pack 'n play in Grandma's basement is a little different for Hannah than being at home, and our routines are non-existent, but she is learning and progressing nonetheless.  She was an incredible traveler: we spent 2 days in the car driving and Hannah was a trooper.  She hardly fussed about being in her car seat so much, and I was able to pluck the bottle into her mouth from the passenger seat as she fell asleep and my mom drove.   I hope she does as well driving back home in a few weeks! 

Can you even see her scar?

It might seem like an arbitrary date, or you might think I'm silly to celebrate that her post-tube days surpass her tube days, but to me, it's a big milestone.  The past 114 days have been much less scary than the 114 before it, and Hannah has progressed by leaps and bounds.  She is catching up on her oral skills, and her mobility and development are on par.  I expect that August and September will bring a swallow study and maybe (hopefully) she will graduate to thin liquids.  She will probably try to start walking soon! (I'm not ready!)   In another 114 days, she'll be days away from her first birthday and the anniversaries of all the crazy things that have happened in her life.  For now, she appears to be a normal, chubby, happy baby with just an almost-faded one-inch battle scar on her neck.