Big milestones!

Lily has had made some big steps this week.  Yesterday (day 25) they started feeding her!!  With all of her gastrointestinal tract previously being in her chest, she was not being fed because they needed her bowel to stay decompressed so it wouldn't compromise her lungs.  Since she had her repair last week, everything is now in the right place and settled in (surgery was a week ago yesterday).  They felt comfortable enough with everything to start feeds.  She will be getting 5ml every 3 hours for a few days to wake up her digestive system slowly.  Her first feed didn't go so well.  There was a residual left in her stomach that was almost the full volume of her feed.  However, her second feeding was great with barely anything left in her stomach.  So that means that everything is starting to work.  All of her subsequent feeds have been great with very little residual left.  Hopefully she will be able to tolerate that volume and they can increase her feeds.

Today (day 26), they did another wean on her ventilator.  She is going to have little weans done every day as long as she tolerates them.  So now she is taking baby steps to getting off of the ventilator.  Also today I finally got to HOLD her for the first time.  I have been anxiously awaiting the time when she would be stable enough for me to hold her and today was the day.  She had her chest tube (from surgery) taken out yesterday which was the last thing holding us back from holding her.  For 3 glorious hours this afternoon, I finally held my baby girl!  She did get upset at one point when I had a tickle in my throat and coughed.  I think it startled her and maybe hurt her a little.  Seeing her silent cry broke my heart.  If she could have made a sound it would have been really loud baby screams.  They ended up giving her morphine to help ease her pain.  She is already on a fentinyl drip but can get morphine to help if her pain gets worse.  Since that chest tube just came out, she is probably sore and she is still recovering from a pretty major surgery.  Once we got her pain under control she settled right back down.  With her being on the ventilator still we can only hold her once a day and for a minimum of 2 hours because of how hard it is to move her.  It took 3 nurses to move her and all of her "accessories".

Now here are some pictures from the past 2 days:

After her surgical dressing was removed

Holding my baby girl!!!

-Liz