Lucy Update

Time for a Lucy update!  Sorry I haven’t been the best blogger lately.  I was pretty exhausted after the wedding (which was wonderful!), and between NICU visits and pumping every 3 hours I haven’t gotten much rest.  Lucy is doing well.  As expected, we’ve made some progress and encountered some setbacks.  The green bile in her replogle tube cleared up enough for them to remove it.  So other than the PIC line in her arm she is now a tube-free baby!  They also started her feeds yesterday, which was a huge milestone.  They started by giving her 2 mls of milk through a pacifier with a hole in it.  She absolutely LOVED it.  She slurped it right up and opened her eyes wide.  She kept it down for a few hours but when we tried the next feed she vomited green bile, which means the milk is not moving through her stomach to her intestine yet (or at least, it’s not moving as quickly as it should be).  So they stopped feeds yesterday and resumed this morning with 3 mls.  So far she has kept it down.  They warned us that feeding is the longest, most frustrating part of the process, and that there are a lot of starts and stops.  So at least there’s nothing unusual about the way things are going.

There is also still the issue of closing the hole in her belly.  The sutureless closure isn’t progressing quite as well as they would like.  Lucy is a really strong and active baby and she strains and pushes a lot when she’s uncomfortable.  Her straining is causing the intestine to pop up a bit and the skin is having a hard time closing over the opening.  They are keeping a very close eye on it and trying to keep her as calm and still as possible, which can be hard at times because she is getting hungry and fussy.  As of now they still think that the sutureless closure will work, but there is a possibility that she could still need surgery to close the hole.  This would be a huge bummer because they would have to sedate her again and put the breathing tube back in.  We’re just taking it day-by-day based on what the surgeon sees.  She has been off the hard core pain meds for a few days, but today they started her on a mild sedative to keep her sleepy and still.  So far it seems to be working well.  

So, the next steps from here are to (1) continue feeding in the hopes that she’ll be able to consume a little more milk each time, and (2) keep her calm and still so that the hole can continue to heal.  

I know we’re all wondering when Lucy will come home.  I wish we knew the answer to that, but unfortunately we still won’t know for a while.  She has to be able to take an entire bottle and poop, and the hole has to close up a lot more.  The average stay for a gastro baby is 6 to 8 weeks.  The surgeon said Lucy’s case is progressing like an average case, and she doesn’t see any reason why Lucy would be out sooner or later than that.  Lucy is 2 weeks old today, so we’re hoping to have her home by early to mid-August.  

Our first peek at Lucy's face without any tubes!

She loves to have her hands up by her face.

Dad giving Lucy her first taste of milk.

A happy camper after her first feed.

A peek at the dressing over her closure.

My sister's beautiful wedding, which I was so blessed to be a part of!