Friday, February 13, 2015

Day 13 - Ivy Joy Sammons

Today marks the 3 year anniversary of becoming Ivy Joys parents.

Saying YES was the wisest thing we have ever done. The Lord said, step out in faith and we did.

We climbed some pretty steep mountains, but the view at the top has been absolutely amazing!

The life of our little heart warrior, this past year, has been uneventful. Uneventful! I pinch myself and thank God for all He has done and all she has overcome!

Ivy’s Congenital Heart Defect’s are,
Transposition of the great arteries, Pulmonary Stenosis, Double outlet right ventricle, Hypoplastic left pulmonary artery, Ventricular septal defect, and Atrial septal defect.

After her first surgery she ended up with Pulmonary Hypertension, an (accidentally) sewn closed, occluded right coronary artery, severe Tricuspid valve regurgitation, severe Mitral valve regurgitation and a pace maker. After many surgical errors from the surgeon here at our home hospital, Phoenix Children’s, we refused to believe no more could be done for our girl. We chose HOPE, packed up our family and headed to Boston Children’s where we would meet the best surgeons in the country. They moved mountains for our girl and found the surgical errors in our sweet girls heart that were causing her quick decline and certain death and promised to do their best to help her.
Fast forward to today and you can see the full circle of Gods miracles and I know He is not done yet. There are so many miracles being done in these children. So many little ones who not long ago had no hope, no Mommy, no daddy, no family, no medical care, no love! So many families have said YES to God’s calling and He is showing off big!!! Oh how I love the details, He is in to details friends! If God has been speaking to you, if you feel passionate about the orphan, about the sick, the helpless, I encourage you to do something. Yes, it is scary, yes it is hard, but the rainbow after the storm…. Oh it is absolutely amazing! I did not fully understand the magnitude of a deep relationship with Christ until I had no choice but to surrender it all and truly NEED Him. I would never want to go back to the way things were before Ivy. We love bigger, we hug longer, we give more, we want less, but we have more!

 Medically, here is where we are today. Ivy’s heart is fully paced and will require her pacemaker forever. She has had 5 open heart surgeries, one minimally invasive heart surgery, and 16 heart catheterizations. She looks like any other 4 year old, if you didn't see her scars you would never know what she has been through. She is full of joy. I mean just oozes it. She is loving, kind and compassionate. She is very funny and very dramatic. She does not run fast like other children, she tires easily and needs to take breaks often but she never complains about that.

Ivy is followed closely by the transplant team at Lucile Packard Children’s Hospital in California. She will have another heart catheterization in the next few months to measure her pressures and do another angioplasty on her coronary artery. This year the awesome news is that her heart is doing ok and she is still showing good response to all of the medications we are using. The not so good news is that she has been systematic and is showing no response to the pulmonary hypertension medications that we are using. Her pulmonary hypertension has actually gotten worse. But we are not afraid, we are not worried, we have so much hope!!! After this next heart catheterization we will experiment with some new things to try and get this PH handled. I have no doubt more wonderful reports will be in the making for next year!

You can read more about our family here 


Diana said...

It is so wonderful to see how far she has came.
I have followed her story sense the beginning and prayed and cried with you many times. Bless your family

LisaE. said...

She looks wonderful. What a great testimony to stepping out in faith.

Andrea O. said...

I still marvel at all Ivy has overcome!

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