October-Down Syndrome Awareness (Part 2)

Dear Sawyer,

Where was I?   Yes. I remember now.

It was time for you to come into this big amazing world.  We called all the right folks and headed to the hospital.  Actually, Dad headed home while I waited at the hospital.  This was morning and because I had eaten 1/2 of an apple before we went to the doctor, they made me wait til about 6pm before they'd start the c-section.  So I sat around the hospital while Dad got your brother situated with friends until Nana and Pop could get here.  Yes, I know.  MEGA-BORING!

Finally, they started the c-section. It took a bit of tugging to get you out.  Once you came out, you were red and screaming at the top of your lungs.  (our first indicator that you had inherited the STRICKLIN-temper)
You were M-A-D.   You had a white blond fuzz on top of your head.

Here you are the day after you were born:

I cannot remember the exact measurements but I think you weighed a bit over 7 pounds and stretched out to about 19 inches.

Since they knew you had a heart defect, they put you in the NICU immediately after birth.  They kept you in the NICU at the birth hospital until they could move you to CHOA.  At that point, they were not sure of the diagnosis.  They would not let me feed you so I just pumped breast milk and froze it.  They didn't want you to eat in case they needed to do heart surgery.

At some point a doc from CHOA came and did an ECHO and other tests and determined you had a heart defect that needed medicine sent from a central line directly into your heart. 

After 5 or 6 days they transferred you to CHOA where they put you in CICU.  You stayed in CICU for about 4 weeks.  During that time, they finally diagnosed you with a different heart defect.  It was a much simpler defect to fix and didn't require the central line.  That was the good news.   The bad news was you had PAH. (Pulmonary Arterial Hypertension) and they couldn't operate on your heart because of this. About 1 in a million babies have this.  There is no absolute cure.  Most kids live with it, until they don't.  They didn't give us much hope you'd live more than 1 year.  In fact, after telling us this many of the docs quit coming to see you and would not talk to us.

That's okay though.  We had 2 very good cardiologists who took very good care of you.  We also met a pulmonologist.  We didn't like him very much.  He just told us that we could decide for ourselves what we wanted to do as far as care and he'd do it.  He suggested we go to an out of state hospital as they were the best at dealing with PAH.  We said no.  So we researched even more and asked lots more of questions.  Then we decided to put you on a experimental drug to help with the PAH.  (along with some others that the cardiology team added.)

After all that was settled, medical supplies were delivered, I got certified in baby cpr, and I learned to insert a NG-tube thru your nose, into your tummy, THEN we were released to go home. 

I won't bore you, Sawyer, with the details of paperwork and genetic testing.  Let's just say, we had a reputation at that hospital.  It wasn't bad, really.  I think they were just not used to parents who used the internet as much as we did.  Nor were they used to answering the types of questions we asked.  Let me just say, we could read those ECHOs pretty good for amateurs.

That's all for now.   Next time, I'll tell you about Oxygen Man and other fun stuff!