I feeeeeel good!

Sophia got a great night’s sleep.  I held her in her favorite upright position (trying not to put too much pressure on her tube), and she fell fast asleep.  The few times she woke up, she was able to get herself back to sleep pretty quickly.  Her hands were cold during the night, and we can’t really swaddle her with the tube, so I tried putting socks on her hands as mittens.  She didn’t like that at all and tried to squirm out of them.  Maybe the folded over sleeves the other night contributed to her insomnia…

 

You could sure tell Sophia was well rested today.  She was smiling frequently, really exploring with her eyes, using her right arm a lot–even pushing my hand to put the pacifier back in her mouth.  

 

A Minneapolis School District teacher came by today to meet with us regarding their plan for Sophia.  She thought Sophia was doing really well with her eye contact and tracking.  She reminded us that she’ll be delayed for several reasons–her prematurity, her Down Syndrome, and the fact that the majority of her energy has been spent on getting healthy.  The District will come up with a barebones proposal (apparently, primarily to do the things others babies do), prior to OT and PT being able to evaluate her at home early next week.  It will be nice to be connected to expert assistance, but it is weird that she’ll already be an enrolled student at just a few weeks old!  

 

Sophia’s feeding progression went a little slower than we expected.  I guess Dr. Foker doesn’t like to try bollus feeds until post-op Day 5, so that is tomorrow (8AM, not the midnight I was shooting for).  Because they took part of her stomach to create the Nissen, and she has not had any food in there for a couple of weeks, they need to have it expand slowly.  It sounds like if we get her bollus feeds about half way to the goal, we can go home and continue to work on it.  Speech is still recommending that she be allowed to drink thickened milk from a bottle, so we just need permission from GI and hope to get that tomorrow.  

 

On the bodily function front, Sophia had her first stool since surgery, now that she can actually eat real food.  Lucky for John, he wasn’t there when I went through 6 diapers in the course of 10 minutes trying to change her.  She handled the new bowel activity well, so we are glad that is one more thing going well.  Seems odd to be cheering about dirty diapers, but it’s become a sign of good health.  

 

One of the surgery team members came by and said Sophia’s incision looked good. We were glad to see that it was smaller than we expected.  Hopefully, it will continue to heal well.  We are waiting to find out about restarting tummy time; so far we are just doing aerial tummy time so she doesn’t lay on her tube.

 

PS – there is an exciting new video of Sophia hiccuping–that is if you appreciate that sort of thing–and John has posted some new photos over the past few days if you haven’t seen them.