Bye Bye Silo!

Today was a BIG day!!!  We arrived at the hospital to learn that Lucy’s intestine was all the way inside and it was time to remove her silo!  Also, the surgeon was able to do the sutureless closure!  They did the closure at her bedside and we were even able to watch.  It was a remarkably simple procedure; they just gave her an extra dose of pain meds, pulled the bag out, and put a dressing over the hole.  It was hard to watch because she was in pain and her heart rate shot up pretty high, but it was better than sitting in the waiting room waiting for her to come out of surgery.  The dressing will be changed every 4 days or so and the hole will gradually close under the dressing over the course of several weeks.  During this time we’ll be able to hold her and she could even come home before it is entirely closed.  So, after all these months, the Littlest Warrior is finally in one piece!!!

Right before her silo was removed.

The surgeon and her team removing Lucy's silo.

Yes, this is the bag that our daughter's guts were in.

Lucille Amelia after her Extreme Gastroschisis Makeover!  The black thing on the side of the dressing is her umbilical cord.

Taking in the moment. :)

Now that she’s not hooked up to the silo they can start to wean her off her pain meds.  Once that happens they’ll take her breathing tube out.  She is still too sedated to breathe on her own.  They are hoping to take her breathing tube out on Monday.  Once the breathing tube is out we’ll finally be able to hold her.  I can’t tell you how much I’m looking forward to that day.  Just thinking about it makes me cry.  Not being able to hold and comfort her is by far the hardest part of this whole thing.

The next phase is the longest part of Lucy’s recovery: feeding.  First we wait for signs that the intestine is moving.  The intestine shuts down when it’s being manipulated like it was in the silo.  Even adults experience this when they have surgery and the intestines stop moving for a couple days.  But now that it’s inside her body it should start to work.  Two things have to happen.  First, she has to poop.  She has passed meconium before, but that was because it was being squeezed out every time they tied the bag down.  Now her intestine has to move meconium on its own.  Second, her replogle tube needs to be clear.  This is the tube that goes from her mouth to her stomach.  Right now it’s removing the green bile waste from her stomach because it can’t go out the other way through her intestine.  Now that the waste from her stomach can go through the intestine, there shouldn’t be any bile in the tube.  Once these two things happen, which could take a week or more, they’ll start introducing small amounts of breast milk.  She can go home when she can take a bottle and poop, but at this point there’s no telling how long that will take.  

Even though we still have a lot of work to do, all I can think about is being able to hold my baby.  I feel like as long as we can hold her it won’t be so bad, even if we still have a long time left in the NICU.  I know we have to be patient, but it’s SO hard to miss out on these first days of bonding.  I’m counting down the seconds to what will surely be one of the best days on my life.  

Lucy should have a pretty mellow weekend so you probably won’t see any updates for a couple days.  However, it will still be a big weekend for our family because my sister is getting married!  The wedding is in SoCal and I was supposed to be the Matron of Honor, but for the longest time we didn’t think I could go for obvious reasons.  But then Lucy came early and I just got the green light from my doctor to go!!  The idea of missing my sister’s wedding was breaking my heart, and I’m SO thrilled I can make it!  I’ll be gone for one day but Erik will stay here to be with Lucy.  For those of you going to the wedding, I’ll see you on Saturday!