October-Down Syndrome Awareness (Part 3)

Dear Sawyer,

You're home!!!

This is your first Christmas!!!  

We were so happy to get you home.  Mom and Dad's bedroom was your bedroom.  We had your oxygen machine (then later, the GI-NORMAS oxygen tank) and your feeding/meds in our room.  You had to have meds every three hours around the clock, along with tube feedings.  Dad and I took turns feeding/medicating you. 

I was home with you and Judson most days while Dad went to work.  It wasn't like it is now, with Dad working from home.  Judson was very helpful.  He helped me pump milk. (Oh so helpful was that)   You see, while you could breast feed/bottle feed, the docs said NO.  With the heart defect, your body needed extra calories.  You would tire out before getting enough calories if you ate by mouth.  So we fortified breast milk with baby formula and fed you every three hours through that tube running from your nose to your tummy.  It was funny, right before it was time to feed, I'd always hear you smacking your lips together.  I loved that sound.

Judson was also very helpful with the man who delivered the oxygen to the house.  At first he was scared.  Then, he started getting excited when Oxygen Man would come.  He was two at the time and he could never remember his name.  So he was just Oxygen Man. Oxygen Man let J help which made J feel very special. Let me tell you, those big old oxygen tanks were very hard to get in and out of the bedroom/house.  They were as tall as I am.  They were one of the things that kept your body working and healing so that you could eventually have surgery. 

While we were scared at first, as time went by, we seemed to get in a routine.  I even carried you (along with your mini-oxygen tank) to the mall a few times.  You've always liked going places.  You have always been very alert.  Even the doctors commented on how very alert you were as a tiny little baby.  The only thing holding you back was that nasty PAH and your heart defect. 

By the way, you used to LOVE listening to Josh Groban.  At the hospital, I brought a J.G. cd for the nurses to play for you.  They loved it because it wasn't 'kids songs'(Which is what most parents brought) and it seemed to settle you down.  At home, I'd try different cds but ALWAYS you wanted Josh Groban.  It's funny, when Judson was little and colicky he liked for me to read to him.  Didn't matter, as long as I read.  He preferred chapter books.  The Hobbit comes to mind. With you, it was music.  You loved music.  Mostly stuff like J.G.  Now that you and Judson are getting bigger,  he still loves to read and you still love music. 

Anyway, back to the story.  Dad and I took you to your cardiologist, Dr. S, every month.  We'd both go, along with Judson.  Every time, your PAH seemed to be a bit better.  After a while, we began to realize the doctors at the hospital were not right.  Instead of getting progressively worse, you were getting progressively better!!!   We began to have hope. 

Next time, I'll tell you about your surgery.....