Thursday, March 30, 2006

Evan's story

We were a young couple eagerly expecting our first child. At the time, every thing seemed to be falling into place with our lives. My husband was completing specialized training for the military, we were pregnant and we would be assigned to an area when he graduated where we could start thinking about buying a home. There was no hint of what was around the corner.

The first surprise was that Evan was in a breech position and estimated to weigh over 11 pounds. My obstetrician discussed this with us and we decided that trying to turn the baby would be fruitless because of his size. A cesarean section was scheduled. At that point I was just glad that the end was in sight. I was so tired of barely being able to move and eager to meet my baby.

Everything with the birth went well. Evan weighed a whopping 10 pounds 6 ounces and passed his Apagar scores with flying colors. I was thrilled to be holding my perfect baby and was eager to start nursing him. The nurse was helping me latch him on my breast for the first time when she noticed that he turned a bit dusky for a brief period of time. Assuring me that he looked fine and was only doing this just in case she went and got the pulse oximeter to test how well oxygenated his blood was.

The numbers were lower than expected so she took my precious baby from my arms to run more tests on him and put him on supplemental oxygen. I was so tired and still drugged up that I drifted in and out of sleep praying the whole time that nothing would be wrong with my baby. I kept hearing him cry while they poked and prodded him.

The pediatrician on call decided that he needed to be moved from the small community hospital that he was born at to a larger one with a NICU. I asked to go along with him but since I could still not feel my feet, because of the spinal block, I was told that I would have to stay where I was for now. Devastated I was allowed to see him one more time through the incubator that the EMS people had brought to transport him to the other hospital.

The doctors from the other hospital assured us that he merely had pulmonary hypertension which caused his pulmonary arteries to shrink a bit with the stress of adjusting to life outside the womb. All he would need was extra oxygen and time.

Five days after his birth I went to visit Evan with my mother-in-law. He has been placed on bipap to help open up his lungs and he seemed to be doing better. An echocardiogram was scheduled for that day because one of the doctors thought he heard a murmur in Evan's heart. I decided to stay and watch the test.

It took awhile to get all the equipment set up as it was going to be a video consult with a pediatric cardiologist in a city about two hours away. I remember sitting there as the test began confident that this was a mere formality. Then the technician that was performing the test started freaking out. She could not find all the normal things that she was looking for. I could not at the time understand what she was looking for but I picked up right away on her worry. I started praying again that my precious baby would be fine.

He was not fine. They discovered a very complex heart defect and would have to transfer him to another hospital with the expert pediatric cardiology team that he would need to address his complex health problem. The doctors could not even apprise me of the extent of his defect since they were not experts in the heart and there was static on the line so the cardiologist did not get a complete picture either.

My world was completely turned upside down that hour. I went from having a baby that needed a little extra oxygen to one that was gravely ill. Before we would be able to take our firstborn home we would have to endure several surgeries including the implantation of a pacemaker, six weeks of hospital time, eating difficulties and the destruction of all our hopes and dreams.

Getting him home was only part of the battle. He developed bad reflux while in the hospital so nutrition to get him to grow before he could get to the next stage of his operation was a huge challenge. I also had to come to terms with what it meant to be the parent of a child with a heart defect. I had to endure the pitying look in people's eyes when I told them about Evan's diagnosis.
Surprisingly he did not turn out to be a sickly infant, too weak to even lift his head. He hit all of the important milestones at all the right times. Slowly life achieved a new normal.

About that time it was decided that he was ready for his next surgery. By this time I had done more research and connected with other parents through the internet. I felt more in control with the situation. I had been there before.
Evan did well with his surgery and was out of the hospital in a week. I was thrilled and happy that we would be able to go and spend Thanksgiving with family. I thought we were home free as he would probably not be needing his third and final surgery until he was three or four years of age. I had so much to be thankful for.

The evening of the day after Thanksgiving, Evan started crying
inconsolably. I was frustrated with him for not responding to my attempts so calm him and eventually I ended up putting him down for the night thinking that he was just over tired from all the excitement of the day. He woke up early that morning and when I went to get him I could tell immediately that something was wrong. One side of his body was limp and useless.

A CT scan would show that the middle third of his right hemisphere, the part of the brain devoted to voluntary muscle control was affected. Again our world was turned upside down. This time we were very lucky as if that blood clot had happened in any other part of the brain his entire personality and ability to learn could have been affected. He could have easily died that night.

Again life has returned to a new sort of normal. Evan finally started walking a year after the stroke. There is a trace of a limp in his walk and he refuses to use his left hand instead preferring to make other adaptations. He is on blood thinners to prevent another stroke so when he trips and falls he bruises easier than most kids. The casual observer would not realize that there is anything amiss with him.

While life is "normal" right now I know that it can change in a blink of an eye. Evan is facing another major surgery this fall so of course I am hopeful that maybe this surgery will go smoothly with no complications. We shall see what life holds in store for our special little man. All I know is that I treasure moment that we are blessed to have him here with us.

October 10, 2006

I am adding more to Evan's story since he has been through the third of the three stage surgery. The surgery went very well with no major complications. He was only in the hospital for a week. During that week right before he went home he was placed on a 24 hour Holter monitor. That test showed that Evan's pacemaker was not working correctly due to inflammation from his surgery. Evan has an underlying rhythm, so it was not like he was in immediate danger but it was decided to admit him after several pacemaker interrogations showed that there was minimal improvement in how the electrodes were working. After being given some steroids the electrodes started working better but still not perfect. Right now we are at the stage where he will have to have his pacemaker replaced in the very near future.

Another update:

Evan had his pacemaker replaced with no problems at all. Things have been very quiet and great for us.


Gina said...
This comment has been removed by a blog administrator.
Zephra said...

I didn't even bother looking at the grammar. I was too swept up in the story.


that was amazing.what a special little man you have and how lucky he is to have such a loving mother.

Anonymous said...

He is beautiful! Did I miss somewhere where you specify which heart defect he had?

Suburban Turmoil said...

My heart goes out to you. Thank you for writing this- I'm sure it will help comfort someone else in your situation. Your son is simply adorable.

Anonymous said...

A stunning little fighter, that's all I can say.

What a trooper - all of you! : )

Nanette said...

What a fighter Evan is! Such a sweetheart, with a wonderful momma to care for him! Thanks for sharing your story!

Knock knock - it's cancer! said... heart goes out to you and Evan! I know he is strong, as it takes a fighter like him to keep going. He is simply beautiful and reminds us all about what life and love is truly about.

Mother said...

Awesome mom, you have an awesome child!

Dayngr said...

Sending hugs and sunshine through the internet to you...

Overwhelmed! said...

This story brought tears to my eyes! What an uphill battle little Evan and your family have had. I admire your courage and grace throughout all of this.

May God bless your family and keep little Evan healthy and strong!

Anonymous said...

I hope your son is well and will pray for him. I know only too well your feelings as my son was born with heterotaxy syndrome--a very rare and most often fatal heart disease--especially when diagnosed after his birth 22 years ago. Please visit my blog at Or you can also google heterotaxy syndrome and click on more and then go to blog search. There I have 3 posts: In the beginning, War and ticktock.
God bless you and your family,

Andrea said...

Reading Evan's story brought tears to my eyes, because we experienced many of the same thoughts and feelings when our son was diagnosed with his CHD. I'm so glad to hear he's doing so well now, but I am also well aware that we never REALLY feel safe with our heart kids. Thanks for sharing your story.

GFMouse said...

I found your story, well a link to it on pediacast. I too have a child with special needs, his needs are a bit different. I just want to give you a hug, feel free to read our blog. We also live in Northern Cali too.

Candace April said...

What a beautiful child!

I followed here from your comment on my post (my daughter was born with Tetralogy of Fallot while DH was in Iraq and I am now pregnant with a son who looks like he has a healthy heart). My daughter is doing well but will need a valve replacement at some point.

I'm going to add you to my blogroll.

A while back, I talked with some other parents about starting a heart blogroll, but had trouble locating more than the few I already knew. Looks like you have created a list of a really supportive and beautiful community...

Cheers, best of luck going forward.

HennHouse said...

You are all so brave...

Anonymous said...

I know what you are going through,i have twins girls 2 one has just had a heart transplant and one has the early stages of heart failure,me there mommy has severe heart failure as well,its in our can take a look at our story if you want and sign our guest book for the girls.
perhaps we can link pages up that would be good.KEEP UP YOUR GOOD WORK. LOUISE AND SIMON WILLIAMS X

jennifer said...

I just wanted to let you know that I have a son with heterotaxy, also who has a pacemaker and suffered a stroke during/after the bi-directional Glenn. Our children are definitely unique, but they have shared similar paths. Thank you for sharing your story.

Sherry C said...

Evan story is so touching, he is a trooper isn't he. My third was rushed to the NICU after birth as well i can relate to how scary that time is. All your kids are so cute too.

SabrinaT said...

What a beautiful little boy!

My son was born without a diaphram and spent weeks in the NICU, followed by several surgeries..
It is something that changes you forever.. God Bless!!