Wednesday, February 2, 2011

CHD Spotlight 1

Welcome to my first CHD spotlight. I thought it only fitting to spotlight my own CHD hero as the first. I know I give a little rundown of his life on my CHD Awareness page, but I thought I'd give you all a little more detail about our world.

Isaac Paul Brimley

When we got pregnant with our third child, we both kind of knew it was going to be our Isaac. We had that name picked out since our first but had girls and never got to use it. So when we went to our 20 week ultrasound our minds were on confirming that he was a boy. And as the tech scanned sure enough, it's a boy! We knew it!!

But wait, why is she spending so much time looking at his heart? I'm no expert but that doesn't look quite right. Now she's going to talk to the doctor. Did that look right to you honey?

No, I couldn't make out four chambers. I could only see three.

The tech came back and told us they were going to refer us to perinatology. It may just be a positional thing, but we have to make sure. Perinatology said the heart didn't look right but we'd have to go have a fetal echo done by a pediatric cardiologist to get a definite.

The fetal echo confirmed that our baby only had three chambers in his heart. He was missing the most important one- the left ventricle. His condition was called Hypoplastic Left Heart Syndrome, or HLHS.

We were giving options for surgical procedures, transplant, just letting him die when he's born, and having an abortion. We opted to try doing a series of three surgeries (Norwood, Glenn, and Fontan) to replumb his heart.

Isaac was due Jan. 28, 2008 but decided to make an arrival 4 weeks early. This could be dangerous for his little heart. If he wasn't big enough, they couldn't do surgery. But when he came on Jan. 1, 2008, as the first baby of the new year at the University of Utah hospital, he weighed 6 lbs, 12 oz. Not the premature weight we were expecting, but a miracle.

There were a dozen doctors and nurses in the delivery room and the moment he came out, they cut the cord and passed him off to the NICU staff. I didn't even see his face.

The first time we saw him was when life flight brought him by my room in his incubator on his way to Primary Childrens Medical Center.

I didn't get to hold him until he was a day old, just before he had an emergency colostomy. They discovered Isaac had an inperforate anus, which meant he didn't have a bum hole. The colostomy it's self went great but after surgery Isaac had a hard time keeping his blood pressure up and because of all the fluid they had to give him just to keep him alive, he went from looking like this:

To this:

His lungs were very sick and he wouldn't be able to have the Norwood surgery as planned. They gave us the option to try a brand new surgery, the Hybrid. He would only be the third one they'd done it on. They hoped it would buy him time to get strong enough to have the Norwood. We just prayed he'd pull through and get strong enough for surgery. I changed my first diaper when he was a week old. I never knew how much changing a diaper could mean until I couldn't do it.

My husband finally got to hold our son for the first time when he was nine days old. He had the Hybrid surgery the next day and things went pretty well. But there was a lot to take in:

IV's on the left, Ventilator on the right, Chest tubes down in front, Tiny baby somewhere in the middle.
It took us three months to get Isaac strong enough to go home. We went home on April 3, 2008. We were very happy to have him home but it wasn't meant to be. He was only home for nine days before we ended up back in the ICU on a ventilator on April 12th.

Isaac got pretty strong during this time. We were able to have him out of bed and play with him a lot. They decided to try doing the Norwood and Glenn surgeries at the same time, something they had never done before. It didn't go well. There were some complications from the Hybrid that caused the Glenn portion to fail. They had to put it all back together. And a couple days later they went back in to try to fix the complications from the Hybrid. They were unsuccessful. There was nothing more they could do for him.

We started focusing on getting him home and having some good family time with him. Our girls were only 3 and 2 and we wanted them to be able to have memories of their brother. It was a hard battle for Isaac. He was a very sick boy. But within days of being able to bring him home, he threw up, aspirated it, and went into respiratory failure. He died in my arms, with his daddy's hand on his chest and his big sisters and grandparents close by.

The thing most people remember about Isaac were his amazing eyelashes!

We lost our sweet Isaac on July 26, 2008. We buried him on August 1, 2008. He would have been 7 months old that day.

Headstones are a funny thing. They hold different meaning for different people. For us it was a way to pay tribute to our sons life. And it was very important that we have a head stone that reflected this. It was a thing of healing for us, something grand we could do for him in a world where we couldn't do much for our son.

The following is the video of Isaac that we played at his funeral. It is pictures of his life set to a song written for him by the Songs of Love Foundation. Feel free to watch.



Melissa said...

Sweet Isaac! I love looking at your pictures!

My Garden of Eden said...

Love you Jess!!

Val said...

I cry everytime I read anything you write or say about Isaac and here I am at work bawling like a baby. Love you Jess. Isacc is very lucky to have parents as strong and as loving as you and Paul. When the time is right it will be a VERY happy reunion.