What A Difference A Year Makes

This is the second Mother’s Day we have had Lillie and the first where we didn’t have to consider going to the hospital with her.  Let me explain.

Mother's Day 2011

Mother's Day 2011, Lillie is only a couple of months old.  Very small (about five pounds) and we are very new at being parents, let alone experienced with Lillie’s many conditions. 

We take Lillie out back to take some pictures with mommy – first Mother’s Day and all.   We get her a little dressed up and sit her in mom’s lap.  Of course, Lillie spits up most of a feed.  This is the first time she has spit up.  It is all over mommy and Lillie.  Not exactly portrait material.

I had a soccer game (yes, the league has learned their lesson and they didn’t have games on Mother’s Day this season) and left shortly after that.  When I get home, Carrie tells me Lillie went rigid and turned blue very briefly while I was out.  It only happened once and we have never seen it before so we figure we will watch for anything else strange that day. 

A few days later, Lillie goes rigid and turns blue again.  We call one of Carrie’s sisters, who is (kismet?) a pediatrician.  She tells us to take her to a doctor right away so we start to get her stuff together.  Before we leave, Lillie does it again.

Okay, now we are completely freaked out.  We don’t have a clue what’s going on so we are in a full blown panic.  What do we do if she does it in the car?  Does this have anything to do with her chromosomes?  That CPR video they show you at the hospital before you go home is not adequate for what we are feeling.  Breathe.  Get her in the car and go.

We stop at Lillie’s pediatrician’s office because it’s very close to home.  We run in and grab a nurse.  They take her vitals and ask us what has been happening.  They look worried but tell us she looks fine and to take her to Dell Children’s Hospital ER to be sure.  It will be faster to take her ourselves than wait for an ambulance.  Back in the car we go.

No problems on the way there.  Whew!

Then we arrive and start to sign her in.  Rigid, eyes closed, very blue.  That did it.  We get rushed in and Lillie gets five nurses and two doctors in the space of 30-seconds.  Thus begins a 17-day stay in the hospital while they run tests – practically around the clock.  Part of this is a study to see how she swallows (difficult with a cleft lip and palate) and they find she is aspirating liquids and decide she needs surgery to place a gastronomy-tube which we will use to give her most of her nutrition.  At the end of the visit, we are told the cause of her blue episodes was most likely apnea caused by reflux. 

Mother's Day 2012

Well, now we know it was not apnea.  It turns out (we find out during a July hospital stay) Lillie probably had an infection and while she did not get a fever, it caused her to have seizures.  At that age, her seizures presented themselves by causing her to go rigid, stop breathing and turn a scary shade of blue.

In case you’re wondering, Lillie is doing well now with no seizures since infantile spasms (another post) the end of last year and we are having a wonderful Mother’s Day.  My advice?  Take a minute today, and every day, to give the kids (and their moms) an extra hug and kiss.