Monday, April 2, 2012

I Don't Know

I don't know.  I always hated those three little words because I always thought there was a reason for everything.   When teaching kindergarten:  "Why did you hit him?  I don't know" (the answer is because he annoyed you), "Why did you just throw your whole juice box away without drinking it?  I don't know" (the answer is because you didnt like the flavor your mom sent you).  At home:  "Why did you leave your math book in your locker when you knew you had a test (this one is for Beth).  I don't know", (the answer is you forgot it).  For each and every one of these questions, there was an answer and it frustrated me to no end that the person would act clueless.

August 26, 2009 was one of the most exciting and sad days of my life.  I went into labor that morning at 2 am.  Noah was born around noon.  It was an uneventful pregnancy (other than gestational diabetes which I had with both Beth and Hannah).  Actually, it was the easiest pregnancy of all three children because I was not sick at all.  Even though Noah was a month early, I knew he was big enough to survive with no problems.  When he was born, he did not make any noise for awhile, which worried me. In fact, he never cried, just made a small noise.   Mother's intuition kicked in and even though they said everything was good, I still felt uneasy.  Soon after his birth, Chris left to go check the girls out of school and I was able to cuddle him.  I noticed that he had a blue tinge to his lips.  The nurse came in and took him to the nurses station to check his sats.  She came back in a few minutes later and was holding an oxygen mask over his face.  She informed me that his sats were a little low and that she was going to stay in there with us and check him for awhile.  She then rolled him out again.  The next thing I knew they were asking where Chris was and informed me they were going to take him to the NICU for awhile because his sats were low.  They said they could only wait 5 more minutes then they would take him.  I called Chris in a panic and he was in the parking deck so they waited.  The girls came in and were able to spend about 5 minutes with him.  We were able to get one picture of us with him and then they took him away.  Of course, I was a basket case and holding it together for the girls was extremely difficult.  Little did I know our long journey was just beginning.  The girls did not get to see Noah again until he was almost 3 months old.  In fact, nobody but Chris or I was allowed to go to the NICU because that was the year of the swine flu and they were overly cautious.

When he got to the NICU, they ran every test known to man.  He was pricked and poked so many times that he still has little white scars all over his hands and feet.  He hated anyone to mess with his feet and it took him a very long time to get over that.  One of the worst days was when we came in the NICU to visit and he had an IV in his head.  That was heartbreaking.  All of his tests came back normal.  They told us he would only be in the NICU for a few days.  When we asked when he would come home they said "I dont know".  When we asked when tests results would be back they said "I don't know".  WHAT IS WRONG WITH MY BABY ???  I DON"T KNOW.  I have never been so frustrated in my life.  Finally after a week and a half he had a seizure and had to be intubated because his CO2 was so high.  "Why is his CO2 so high?  I don't know".  So because we dont know we are going to pump him with Phenobarbital which makes him sleep (NOT GOOD FOR A CCHS PATIENT but at the time they didn't "know" he had CCHS).    We finally had him moved to Children's Hospital because it was clear ST. Vincents had no idea what to do with him.  Before we left, the doctor came in and gave us this one sheet of paper and told us they were checking for Congenital Central Hypoventilation Syndrome, which is an extremely rare disease.  She then informed us he would more than likely be institutionalized the rest of his life then left so we could "digest the information".  I have never felt so helpless in my life.

After being in Children's NICU for several weeks we got the diagnosis and it was in fact CCHS.  So now the answer was we DO KNOW whats wrong with your baby and we can manage it.

So that is why I do not like the words I DONT KNOW.  There has to be an answer to everything right?  I now realize that there may be an answer but you may never know what it is.  Why do things like CCHS exist?  I don't know.  Why can't you use all of this advanced technology to come up with something better than a heavy ventilator?  I don't know.  Why is there not a drug out there to help him breathe better? I don't know.  Why is it such a struggle day to day dealing with this stupid disease?  I don't know.  How is it going to affect him in his later years when he wants to live on his own?   I don't know.

So when you see me, and if I ask you a question please do not respond with "I don't know".  I have enough of this answer for a lifetime.


  1. as a fellow CCHS momma I hate the I dont knows .. but for CCHS it will be a life time of I dont knows.. This sounds like Zoe's birth but we were in the NICU for 6 months

  2. And I thought 4 months was a long time! CCHS is one big I dont know.