Thursday, June 14, 2012

The Story of Katy’s Heart Updated June 2012

June 16, 2010

Updated: August 2010 Updated: October 2011

Updated: June 2012

After 6 years of infertility, and several failed IVF cycles. Mike and I were finally pregnant. At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect.

The left side of her heart was only 1/4 of the size it should have been. She was diagnosed with Hypoplastic Left Heart Syndrome. At that point we were given the opportunity to terminate… but for us that was not an option. The alternative, we were told, was a series of heart surgeries to reconstruct her heart. The first surgery being immediately after birth.
Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth (and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.

The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her "echo" still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs. She was a Christmas Miracle in the Cardiac ICU. No one on the floor has ever seen a HLHS baby this healthy. After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!

At our two week cardiac checkup it was decided that more study was needed. Katy was admitted for a cardiac catheterization, and an MRI. After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.

Over the last two years Katy has continued to baffle the doctors, because she is doing so well. Her heart meds have kept her healthy. Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.
The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. We estimate she eats 1600 calories a day, and she only weighs 20 pounds. It became a concern when she stopped gaining weight 6 months ago.

As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT, decided that another Cardiac Catheterization and MRI was needed. The cath showed her pressures to be seven times the normal pressures. After doing well for so long, Katy’s care was turned over to the transplant team

As a result of her failure to thrive, a G tube was placed in August for feeds. Although it was not a decision I was entirely on board with, it was better than the NG tube. Unfortunately, even with the high amount of calories we are pushing on her she has not made any significant weight gain.

.Kate was listed as a status 1B on the UNOS Transplant List on July 29th 2010.

To meet Katy you would not believe that she’s a little girl waiting for a new heart. At this time, she is doing clinically well and acting like a happy and normal four year old. She goes to preschool and dance class. She loves playing with her brother!!

She is our ROCK STAR!!!

June 2012 Update

It’s hard to believe that we are still waiting for a heart for Kate.  It has been almost two years since she was listed, and we were told the estimated wait would be two to three MONTHS.  We have been blessed that Katy has been well enough to spend the majority of that time home and living a semi normal life of a 4 year old.

However, looks can sometimes be deceiving and although she is clinically doing well her heart is very sick and needs to be transplanted sooner than later.  The longer she goes without a transplant the more damage she is doing to her lungs and other major organs.

It was discussed at length with the team on where to go from here. It was decided that Katy can not stay 20 lbs. much longer and can not continue to thrive without a new heart.  So the decision was made to admit her in July for a cath and MRI and begin Milrinone treatment which will possibly help her grow and also push her up to a status 1 A making her four times more likely to get a heart.

Obviously, this wasn’t an easy decision for our family.  As it will mean Katy having to live in the hospital. That said we all agree that now is the time to do that.  Since we want Katy as healthy as possible for a successful transplant.

2 comments:

Dirt Road Quilter said...

Sending extra prayers for all of you! Wish I were closer to help with all the things that need doing that you don't need to be doing.

Elizabeth said...

I have followed your blog for at least the past year, after reading a link to your post about Mckmama, but I don't think I have ever commented before. My daughter (who is also 4) and I pray for Katy and your family every day. Once Katy is admitted to the hospital will she be there for a short stay or until she gets her new heart?