Leo's first days

Leo arrived on Friday, August 24th at 2:15 P.M.

I caught a quick glimpse of him as they lifted him up and through this window to the NICU.

Scott went over to see him.

They did a procedure to put a line into his umbilical cord. I went a few hours later and got to hold him for about 5 minutes. Then we had to leave so they could move his IV from his head (where it was coming out) to his foot.

The transport team came by my room so we could see him before he went over to Primary Childrens.  He got to ride over in this set-up.

We visit him in this little home of his while he waits for his first surgery. The kids have come to visit.  Macy made him this little sign for his bed and Abe showed him the tractor he picked out to share with him. 

 Leo spends a lot of time pondering life. Maybe he knows more than we do. 

Reality

My sisty in law made us these perfect onesies.

We have made it 37 weeks and are hanging on. Trying to get a few more.

Tomorrow my mom and kids and I are headed to SLC to stay until Leo is born.

It will probably be a few months until Leo and I are home.

I feel like I am staring reality in the face right now. It looks scary. But I feel like we can do it!

Hurdle #1: Delivery

  There is a plan.

And there isn't a plan.

I wish there was a P.L.A.N.

But there isn't.

The first goal is for my pregnancy to go to 39 weeks. (Babies with Hypoplastic Left Heart Syndrome born before 39 weeks have more complications. We do not need those.) However, I haven't made it that far in a pregnancy yet.

I will have an induction scheduled if I make it that long for the University of Utah hospital.

This is so Leo can go directly to Primary Children's within an hour of his birth.

In fact, they have a special labor and delivery room that has a window in the wall that goes directly into UofU's NICU.  They will check him over and maybe I will get to hold him before they transfer him across the sky bridge to PCMC.

My biggest first worry is making sure I deliver at UofU.  All my babies have been born between 37-38 weeks.  They have also all been fast 6 hours, 5 hours, 3 hours.

As I get closer, the lovely doctors will decide when I need to plan on staying in SLC so that I don't give birth in Logan (2nd choice) or having to stop in Ogden (not a choice) or on the road to SLC (also not an option).

Unfortunately this will all probably be happening when the girls are starting school.  I really hate this.  I want to be here for their first day.  They want me to be here too.  I think the only way that would happen is if I do not dilate early.  This is doubtful.

First hurdle: Get to 39 weeks.

Hypoplastic Left Heart Syndrome- A Post I Never wanted to write

My fourth ultrasound.  Our last child. It was going to be a breeze.  I had planned to celebrate that night with a fun family dinner, followed by a pink cake or a blue one.


The tech glided along with her running commentary of what we were looking at. See the baby's little fingers?  Here's the stomach, the spine, the brain, little feet, legs.  It looks like a boy!  Yay!  A boy!  Just what we were hoping for...quickly she was back to the heart.  Why is she back at the heart again?  She has spent a lot of time there.  I watched the fast thump, thump thump on the screen.


I looked nervously at Scott.  Did he notice how much time she was spending looking at the baby's heart?  He didn't seem to notice.  The tech kept the same calm expression.

"There's just one thing I want the doctor to look at..."


And then another doctor.


"It looks like Hypoplastic Left Heart Syndrome".
Pardon?  I heard the doctor say heart and syndrome.  Heart and syndrome.
"It means, the left side of your baby's heart is small and underdeveloped.  The left side of your baby's heart will continue to deteriorate and have no function."


My baby.


A few weeks later, the pediatric cardiologist at Primary Children's made sure we knew how serious this diagnosis is.  His face showed it.  The room he brought us to.  The cozy couch.  The lamp.  The box of tissues.  Two women followed us into the room.


"It's not the most rare heart defect, but it is among the most serious and complex."  What was I listening to?  I tried hard to concentrate on his words, the diagrams he was showing us.  


"This is a normal heart"
I've seen enough pictures of a normal heart to last me for a while. 
Thank you.


He told us we had a choice to make.  We could choose to do nothing.  Take our baby home.  The valve currently connecting the left side and right of the heart would take a few days to close after birth.  Our baby would die.


Our other choice was hard too.  Heart surgery.  A minimum of 3.  One when he is a few days old. One when he is 4-6 months old.  One when he is about 3.  The heart can't be fixed, just re-plumbed.  He would live his life with half a heart, acting for both sides.  No one knows how long a heart can sustain life this way.  They haven't been doing it long enough.  Not a lifetime.  It is a hard road, with lots of risks and possible complications.  Expect them.  


I held it together for as long as I could.  He was talking about my baby. He fumbled to hand me the box of tissues.


I went home and looked at my 3 beautiful children.  Their healthy bodies have become an unbelievable miracle that I had been taking for granted. Everything works. 


My brain cannot quite process the thought of one of my children enduring such a thing.  Including this newest little boy, whom I love with such fierceness.


We have to try. I have to trust in the Lord.


I am unbelievably scared. Every day I have to make an effort to not get overwhelmed.  There are so many unanswered questions.


One thing I am sure of is that he was always meant to be part of our family.  We will love him forever.  We hope and pray that we get to do that here on earth. For a long, long time.


Thump, thump, thump.