Monday, January 27, 2014

Laura's Many Surgeries

So, here is a picture of my sweet baby girls.  Laura is four and she is holding Harper, who is two. 

Laura’s first surgery was to fix the cleft palate, which is the hole in the roof of her mouth. 

I took her to the hospital Friday morning, September 20th.  We were told to arrive at 8am, but of course, it was just after 11am when we were finally taken to the prep room, three hours  can be very long when you’re holding a four year old who hasn’t had anything to eat or drink since midnight.  The staff met me in the pre-operating room and explained the procedure. Then, they gave Laura a much needed sedative and let me carry her to the operating room and hold her hand until she fell asleep. 

The staff were wonderful, but let me just say here that this is the sixth time I’ve had to watch one of my babies fall asleep and leave them in the hands of perfect strangers.  It’s not getting easier.  I realized as I walked out of that waiting room that I will never get used to it.  It’s that same pang I feel as the school bus disappears around the corner every morning, only this time, I’ve just signed a release form that fills up a whole page of single space type and include the phrase, “possible death.”

I went back to my corner in the waiting room and paced the floor.  The surgery took three hours. Apparently, they are sometimes able to just sew the two sides of a cleft palate together, but Laura’s hole was so large, they actually cut a patch of skin from the back of her throat and used it as a patch.  If they cut the skin off entirely it would die, so they cut a three sided flap and pulled it into her mouth and sewed it in place.  It’s still attached to her throat and the air from her nose comes down either side of the skin flap. 

She stayed three days in the Pediatric Intensive Care Unit because they were worried her throat might swell and hinder her breathing.  The white thing in her nose is a tube that goes through her nasal cavity to ensure an unblocked airway.    She looked so bad when she first got out of surgery, I didn’t take any photos of her mouth.  There was dried blood all over her face and it was caked on in thick layers.  We just left it until the last day because she was so sensitive to touch. This picture was taken the third day, after we got her cleaned up a little. 

The staff told me we could leave her alone in the PICU, but there was NO WAY I was going to let my little girl wake up in a strange place and in pain with no one familiar to comfort her.  Bill and I ended up alternating 12 hour shifts over the weekend.  The surgery was Friday and by Monday morning when she was discharged, we were wiped out.

She was in surgery again on November 20th for some dental work.  We found a dentist who is specializes in cleft palate patients.  She only had four cavities, but he recommended putting her under since the unique anatomy of cleft palate children means they can’t always guarantee their mouth will be numb at the needed spot.  So, she was under anesthesia for the seventh time, but just for an hour.  

The final surgery was Friday, December 13th.  This time, she was the first patient on the docket, so we didn’t have the long, hungry wait.  We went through the same routine, with the same release forms and I handed my baby over to relative strangers for the eighth time.  It never gets any easier, but this was especially hard because it took all day long.  They did a great job of updating me every hour, but man, that was a long day. 

This time, they worked on her whole face.  They sewed the extra opening on her left cheek.  They released the skin from her bone on her right side and
 pulled all the extra flesh toward her nose in order to raise her bottom eye lid, close the gap in her cheek, and form an upper lip.  It was well after 6pm when I finally saw her for the first time.  They did a marvelous job.  She looked so wonderful, I just couldn’t stop crying. 

They told me that the few hours just after surgery would be the best that she would look for a long while and they were right.  She started to swell up the next day and then the areas with stitches turned bright red as they started dissolving.

This is after about two weeks, just before Christmas.  The blue piece over her eye was a bit of foam they sewed in place.  It was there to secure a place holder for a future prosthetic eye.  And so it goes.  I'll try to post more photos as she heals.  But, if you are wondering why I haven't posted in five months, this is my visual aide.  We've been wiped out, but also grateful, very, very grateful.