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Grayson's Birth Story


 "Go get my husband! Go now and get my husband in the waiting room! Go now! He was just about to leave. Go!"

This is what I practically screamed at the hospital intern.

I was sitting beside Grayson's crib in the NICU at Memorial holding my 2 day old son for only the second time ever. The first time had been the short moments after his birth. That was before he started having chest retractions and had to be put under the oxygen hood at the rural community hospital where he was born.

Now he was spending his second day alive at a new hospital, an hour away, that was better equipped for Grayson's medical needs. On nasal cannula, Grayson was free from the oxygen hood and could get the loving I had been dying to give him. All I wanted to do was bond with my son.

"Did anyone at Wayne County Hospital mention that he has features of a baby with Down Syndrome."

This is why I started screaming at the hospital intern. The neonatologist had prefaced the statement by saying, "I don't know how to begin to ask you this question."

"Just tell me. I need to know everything there is to know about my baby's health."

And then she dropped the DS bomb in my lap. And then I started yelling for Drew. And then he came. And then all the terminology I heard was so foreign....epicanthal folds, hypotonia, cardiologist, heart defect.....HEART DEFECT!?

My pregnancy had progressed with very little hoopla involved. My OB actually told me I am every doctor's dream because I never complained and everything always measured right, for both of my pregnancies.

Our "announcement" photo for Facebook. Marloe wouldn't hold the sign.
See the excitement on my face?
Or is that the fear of being pregnant with my second when my first is only 6 months old?

We received all the screenings that they offer, but none showed any markers for chromosome abnormalities. Either way, we didn't care. We only got the screenings to be more prepared for any complications that may have arisen. Grayson's kidneys were a little enlarged in the middle of my pregnancy.

"It's actually pretty common," my OBGYN said. 

So I had some extra sonograms to watch them. When they went back to normal size nothing else was pursued.


Grayson and I with my wonderful OB, who delivered the Wee Pie


Even after Grayson was born my OBGYN went back and looked at my ultrasounds to see if there was any chance that his heart defect was missed. He also looked over the screenings and blood draws, but there was nothing. It just didn't show up.

I happen to be part of that small percentage where the tests, screenings, sonograms, blood draws, etc. don't work.


The day that I went into labor with Grayson, I was 3 weeks shy his true due date.   We had been at the beach that day with Brittany, Mike, Nikki, and Chris. (sister and brother - in - laws)

Marloe at the beach the day before Grayson's birth.
She wasn't even 16 months old yet.
Brittany joked with me because when my daughter, Marloe, was born, her and I had been at the pool that day and then I my water had broke that night. (While watching Taladega Nights).

Well later that very night guess what was on TV? Yep, Taladega Nights. 

Then guess what I woke up with at midnight? Yep, contractions.

I went into labor at midnight and had Grayson at 4:38 a.m. After three, count them, one-two-three pushes.

He came so fast we didn't even have time to get the camera out of the car. So the only picture of Grayson's birth is a fuzzy little shot of him on my husband's phone. And no, we do not have smart phones, yet!

I held him for a total of 10 seconds before he was taken away and put under the hospital oxygen hood. Drew went home to check on Little Sweetie.

So there I was alone, with numb legs. Just waiting on the epidural, that I didn't even need for my three push wonder, to wear off so I could shower and see what the H-E-DOUBLE HOCKEY STICK was going on with my son. When you are lying in a hospital bed unable to see your newborn baby because they weren't breathing properly and you know you are at a rural hospital with not a lot of resources...man, does your mind race. I had heard of "wimpy, white, male lungs." 

"That's what it probably is," his pediatrician said. "He just has a little bit of wet lungs."

Little did I know, life was leading me down a whole new avenue.

And he kept him under the hood for 24 more hours before he was transported to a bigger hospital with a NICU. This is the same doctor that told my OB he couldn't see Grayson's features because the oxygen hood was in the way.

What the *&%$ *&%%$**&^%$%^!!!!!!!?????? WHO DOESN'T CHECK A NEWBORN BABY'S EARS, NOSE, THROAT, ETC. Just lift the hood. I could even see that his ears were a little strange looking.

Drew told me when I asked about his ears, "I think we are just going to have an FLK...funny looking kid."
I slapped him laughing. "How dare you label our baby. Let's say we are going to have an FLB...funny looking baby. Because they usually grow into good looking people."

Oxygen hood or not, that doc didn't know. He probably just wasn't exposed or had experience with a lot of newborn babies with Down Syndrome.  So off we went to the "big city" and a better equipped hospital.

The transport nurse told us later that right when she saw Grayson, she knew it was his heart and not his lungs. About 50% of babies born with Down Syndrome usually have some kind of heart defect. She recognized his features and called the hospital right away to order an echo and EKG.

After my initial tantrum about wanting my husband there to hear Grayson's diagnosis (pending a Karyotype test) , we really did react rather coolly about the diagnosis. The nurses, doctors, and staff were a little concerned with our cool reaction. Maybe we were in shock or maybe we were just two special education teachers that had a lot of experience with special needs children. Our family cried, our friends cried, or parents cried. We were cool.


Sweet Little Wee Pie resting in the NICU
And steadfast about him getting out of that NICU. I dug my feet in and fought to breast feed my little Wee Pie. When he came off of oxygen during his first night there and remained off, they were ready to try a feeding. The wanted to try a bottle first. I begged to differ. I had been pumping, but wanted to try breastfeeding first.

"Be prepared, Elizabeth. He might need a feeding tube or an IV for nourishment if he is too weak to suck."

Ummmm did you see the way he almost took off your gloved up pinkie when you put it near his mouth? My son had no trouble with taking that first meal. Sheesh, he had been waiting three days to get off the oxygen and eat.  And I pointed out to the nurses that they should never underestimate a hungry baby. At least let the least restrictive way be tried first and then move on to other options. That must be my special education, IDEA minded, way of thinking.

So Grayson was eating and allowed to move to the step down nursery. That was fast?! I had been so scared that he would be in there for weeks like all the other babies around him in the NICU. Probably two more days in the step down and then he could go home unless there was a major set back.


I really was only concerned with one thing...it had a beat, pumped blood, and was missing  a huge chunk of itself right in the middle.

You can read about my son's AV Canal heart defect here. This link is to the hospital that did the complete AV repair on Grayson.

The doctor told me the signs to look for that his heart was failing. Then he scheduled an appointment and sent us on our way...with a huge folder full of computer/Internet printouts about Down Syndrome and AV Canal heart defects.



 


That was the only set back. That was the only thing that made me sad. My son was basically slowly dying as his heart failed. How could I go on living my same life I had been while my son's heart failed him?




"We don't. Now we get to live life differently from everyone else we know. And it will be extremely hard, expensive, stressful, and scary. But we get to do something that no one else we know does. We get to have a special boy to take care of and learn from. That is what is so great about this experience.  We get t go a whole new direction from where we thought we were going. I think its exciting."




That was my husband talking. Thank goodness for my husband to ground me and tell me it is all going to be okay. And it was...and it still is. I just need him to reassure me (the dramatic one of the duo) that life just happens the way it does and we have to be positive about it all or what's the use of living and loving life. 





2 comments:

  1. Hopped over from Noah's Dad's blog! Beautiful story. Our Neely also had an AV Canal defect that was repaired at 4 months. Look forward to following your journey! Your little ones are beautiful! God bless! :-)

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    1. Thanks Jenifer. You are officially my first published comment! Thanks so much for your support. I am so glad I can connect with other parents who are going through similar experiences in their life.

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