January 15, 2004

Babies are born every day.  Every baby is different.  Some have brown eyes; others have blue.  Some come out head first; some are breach.  Some meet the world with a loud scream; while others need a little help to get going.

Terry was born purple.  Not normal "I don't breathe so I'm a little blue" blue, but PURPLE.  His cord was wrapped around his neck a couple times, and he was purple.  He's on my stomach, and we're all wiping him off and suctioning him and the nurses are trying to give him my oxygen that is securely attached to my neck when I tell them just to take him to the warmer.

They give him a little blow by oxygen and he pinks up.  Being as I was a nurse on the floor at the time, I'm on the phone with my good friend, Melissa, who was not so patiently waiting for his arrival.  She brings over the pulse ox, and he's fine.  92%--little low but fine. 

Then there is talk about sending him to the nursery.  I do not think he needs to go to the nursery.  He's fine now.  He's pink; his tone is good; he's active; he cries appropriately.  I ask Melissa "Do you think he needs to go to the nursery?"  She gives me a weak smile and says "It's their call".  She cannot override them.  She tells the charge nurse "At least let her hold him before you steal him away from her".  So I get my little pink bundle of joy and get to coo over him for a few seconds before Nurse Kratchet makes Melissa take Terry, and Clint trailing behind for his bonding time, to the nursery.  This leaves me in the delivery room--throwing a fit.  Better word--temper tantrum.

I was MAD.  There was no reason for him to be sent to the nursery.  I was a NURSERY nurse.  I would be the first person to send him over there if he needed to be there.   Melissa would have been the second person to say he needed to be over there if it were true.  Now he was going to go to the nursery and get his bath and cry and get all worn out and not nurse. He would go into his sleepy stage and breastfeeding would be twice as hard as if you get the baby to breast within minutes of delivery when they are alert and active and imprinting on their mother.  I shoved my foot out from under me (since I couldn't move my left leg from my epidural), crossed my arms, and pouted.  I was rude. "Anything else we can get you?"  Nurse Kratchet asked me.  "MY BABY!!"  so she just walked away.

Lucky for me, other people knew how upset I would be that they took my baby away from me, and I ended up with my baby back in my arms approximately 20 minutes later instead of having to wait until I was done with my recovery time in L&D to see him in Mom-Baby.

Melissa put Terry back into my arms and he was so sweet.  He was still smacking his lips, so I was able to get him to breast, and he nursed well.  He was so perfect and sweet.  Every mom counts fingers and toes, but Nursery Nurse moms do the full newborn assessment.  He had all his toes and his fingers.  He didn't have a Simian crease.  His ears were not low set, but maybe a little small.  His eyes had a slight epicanthal fold.  I looked at Melissa and asked "Do you think he looks like he has Down syndrome?"  EVERY. SINGLE. PERSON. IN. THE. ROOM. STOPPED.  I am not exaggerating.  Stopped dead in their tracks and looked at me.   Melissa smiled and said, "Pam and I were talking about it, but we really aren't sure".  I knew it.  It didn't change anything, but I knew.

We were moved over to Mom-Baby where the Pediatrician on call said we could have NICU resident do assessment now vs waiting for regular rounds tomorrow, but since he was stable it was completely up to me.  We waited for morning.  Dr Galbreath examined him and was not convinced he had Down syndrome.  They drew some labs and did an ECHO (heart sono).  It was normal.  That started making me have doubts myself--maybe I WAS being paranoid.  He ended up having polycythemia (extra red blood cells) and had to have a partial exchange in the NICU.  That was an immediate cure. Dr Hocker, the neonatologist, told me that he saw what I was seeing in terms of the Down syndrome, but he "was not convinced".  The characteristics were so mild and his heart was strong and healthy.  He was a perfectly healthy and happy newborn baby boy.  He was all mine, and I was madly in love!!  I started letting myself believe I was wrong--and for the first time in my life, I embraced myself being wrong!

We went home on a Sunday early afternoon.  His sister was so excited to have him home.  She was only 16 months older than him, but she was made to be a mommy just like I was.  She was so cute wanting to hold him and talk to him and tell me every time he cried.  My perfect little baby did what other perfect little babies did.  He cried, he ate, he pooped, he slept, and he made soft puppy dog noises when he slept.

On Monday night, my little sister was at my house and while she was on the phone, the doctor had called to give us the test results for the chromosomes.  After she hung up, I listened to the message and when Dr Galbreath asked me to call him back, my heart sank.  If it was good news, he'd say "all is fine, see you on Wed" not "you need to call me back and here is the back office phone number".  I wrote it down wrong and was on the phone with the call center crying, begging them to get him on the phone.  He softly said, "Terry has Down syndrome".  What else at that point was there to say?  I looked at Clint and we went back into our bedroom, sat down on our bed, and started crying.  Forgotten to us at that time was the baby monitor in the pack and play that was broadcasting our grief to all the guests in our living room.  My father in law, stood up and turned the monitor off, and everyone I was told just sat there in silence. 

We cried and hugged and cried some more and after an unknown but short amount of time, wiped the tears away, walked back to the living room and picked up our PERFECTLY healthy and happy newborn baby boy.

I will not lie.  It was not all okay.  It was not all peaches and cream and rainbows and sunshine. I held that baby boy so tight and loved him so much, but my heart was broken in a million pieces.  I still had a perfect baby boy but I had lost the all star shortstop, father of 2-3 kids, biochemist, neurosurgeon.  All those hopes and dreams we have for ALL of our children.  The same hopes and dreams that change and grow and wax and wane as our children show us their personalities, their strengths, their weaknesses.  Replacing some of the hope were the fears of ignorance and cruelty and abuse at the hands of others.

It took me about 3 days to really get "over" it as much as one does.  I wanted so badly for Terry to not have an extra chromosome, but at the same time I wanted the baby I was holding in my arms, no other.  I could not have it both ways.  At that point in my life I resolved and made it my life's mission to give Terry EVERYTHING he would need to succeed in life, to be a productive member of society, to be the SAME as everyone else in our family.

This blog is going to be me sharing my journey with Terry and his extra chromosome.  There will be some funny stories, some heartbreaking realizations, some advise (both what to do and what definitely not to do!), and just how Terry has impacted the life of every single person he's come into contact with.  I might ask for some guest entries to show some alternate perspectives on it. 

I've always wanted to write a book from the perspective of the mother.  This will be the beginning...the rough draft have you.

You're baby has Down syndrome....NOW WHAT??

My answer to this questions will be lengthy, ongoing, and fluid.  It will be from the perspective of a mother of an older "typically developing" child, the mother of a child with special needs, a registered nurse, and a mom who has her own form of attachment but tough love parenting.  I know that sounds like an oxy-moron but believe me, it works for us.

I am now a mom of FIVE kids.  Yes, life goes on.  Things change.  Things don't change.  Life is about adapting to your current situation, making modifications to fit what you and your family needs, and ultimately, what is right for YOU.  Not anyone else.  No one has to agree with you.  No one has to like it.  We will talk more about that some day soon.  I think it will be an entire blog post.