Tuesday, July 30, 2013

Zuzu Noel Miles

 Ten months ago we were happily living in France awaiting the arrival of our second baby girl. When at a routine ultrasound check up we received startling news from our doctor in very broken and ambiguous English that our then unborn daughter might be born with down syndrome and was at risk for brain damage among other major health complications. The weight of this life altering check-up was a tremendous shock. We could feel that the course of our lives was now changed forever and we had no idea what that would mean for the future of our family. Everything we had ever worked and prayed for was now on hold in order to save the life of this baby.

Fast forward two months of unproductive doctors visits where we continued to get difficult but inconclusive news, we prayerfully decided the best thing for our daughter was to come back to Utah to try to give her a fighting chance of surviving childbirth and giving her the best possibility of having a healthy life. After leaving our job and new home we logged over 400 hours in the hospital and over a hundred of tests in order to do everything we could to keep our unborn child alive. The doctors only gave her a 50/50 chance of surviving child birth. And told us that if Zuzu wasn't kicking or behaved differently that we must rush into the hospital for potentially an emergency C-section that may or may not save her life. Those were long nights.

February 4 our little Zuzu miraculously charged her way into this world. She spent the next 2 months in the Newborn Intensive Care Unit where they confirmed she has down syndrome and two congenital heart defects. The technical terms are AV Canal and VSD. Basically she had one big heart chamber with blood flowing in all directions. which would require an open heart surgery where the surgeon would transform her 1 big chamber into the proper 4 chambers. 

Since her birth she has spent her entire five months of life on oxygen and a heart monitor. She has had very little stamina and can exhaust herself just from eating a few ounces. The doctors told us that she was headed for Heart Failure (which echoed in our minds all day every day.)

July 1st she had her first open heart surgery at Primary Children's Hospital in Salt Lake City. 

The surgery was supposed to take four hours but ended up taking eight. The surgery was supposed to require stopping and starting her heart once, instead it required four times. The surgery did not go as planned. Her conditions and symptoms are now worse. She is struggling with "stenosis" (the narrowing of one of her heart valves) which is putting way too much pressure on the chambers of her heart and is also increasing pressure on the outside of her lungs making it difficult for her to breath. 

The doctors were almost certain she would need only one surgery and everything was suppose to function properly. But now she is back on oxygen with heart failure, blood clots, and death in her potential future. 

In the coming weeks Zuzu will need to go back on the bypass machine and have her second open heart surgery at just 6 months of age. The surgeons will go in and attempt to fix her stenosis by repairing the valve. If they are not successful they will need to replace a valve in her heart with a mechanical valve. What that would mean for Zuzu is she would need multiple open heart surgeries in the coming years and for the rest of her life. They would have to replace the valve every time she outgrows it and she would need a daily shot to help her blood stay thin for the rest of her life. Blood thinners are extremely difficult to regulate in infants. The only other case our cardiologist has had with an infant on blood thinners ended briefly with the loss of the life of that baby.

We were discouraged and losing hope until a Cardiologist told us about a brand new breakthrough valve replacement surgery that surgeons are performing in Boston. It's called a Melody valve prosthetic replacement. It has only been around for a few years and has only been performed on a handful of patients. The results have been miraculous. What this would mean for Zuzu is no daily shot, no risk of blood clots or bleeding to death and hopefully just one open heart surgery for the rest of her life.
Zuzu is already changing and blessing the lives of everyone around her. Thanks to Zuzu the head of Cardiac Surgery at Primary Children's hospital has spent hours on the phone learning about the melody valve procedure from surgeons in Boston and is now making plans to go to Boston to learn how to perform the melody valve replacement surgery. This will bless and change lives of so many Infants, Toddlers, Adolescents, Adults and all their families. This means less open heart surgeries, shorter recovery time, better quality of life for everyone involved and saving dozens to hundreds of lives over the coming years.

Because there are many expenses insurance is unable to cover, we are looking for donations to help cover costs of medical expenses and flights. We are grateful to any and all who support us in saving the life of our daughter and bringing this new medical procedure to a local hospital.
You can  make donations through Zuzu's surgical PayPal account at Zuzunoel@gmail.com

Or you can make a donation to Zuzu's charity account by mailing a check to Zions bank to the Zuzu Noel Miles Fund account.
Zions Bank
180 N. University Ave, Provo Utah

Follow Zuzu's surgery and progress on Instagram  @ashleymiles54 #zuzunoel

 Thank you! We love you!


Dusty McRae said...

Precious little one, my prayers are with you and your family daily.

Tiffany said...

Praying for sweet Zuzu.

Unknown said...

We miss you guys in the UVRMC NICU! Prayers for sweet Zuzu and your whole family! We'll do what we can to help! - Dr. Ken Richardson and NICU staff.

Tere Carlson said...

Zuzu chose the perfect family to come to, with the endless love, kindness and caring. I could go on and on but you guys are amazing and I am grateful to call you all family. I pray all will go well and we will donate (I wish it could be so much more!).
Love, Aunt Tere (and uncle Gary)

Annette said...

I can only imagine what you are going through! As I already td you, my son also has downs, and had an AV canal repair at 3 months.... His surgery was about 9 hours total. They were almost done when they realized his left ventricle was too small, they needed to make it larger so we sat and waited another hour and a half. There was so much swelling and they weren't sure if he was going to need a pace maker or not so they left his chest open for 5 days. The day before they were going to close him up and implant a pacemaker they said they would have to go in and make that ventricle even larger because his blood was backing up into his liver and inlarging it. My brother had already given him a blessing prior to the 1st surgery....but I felt he needed another one before going on bypass again. My brother had a rough day at work and didn't want to drive all the way back to the hospital....so he asked if I felt that it was really needed. I DID! Early into the blessing my brother (who is not really an emotional person) started sobbing. And barely got through it. He opologized for questioning the need for the blessing. The next morning we met with the dr before surgery and he told us that he wouldn't have to go back on bypass.... That his liver looked ok and they wouldn't need to make the ventricle larger! I know that the blessing was the reason for this!
I know that Heavenly Father will take care of your little Zuzu! She is a special spirit! She is perfect!
I know that we don't know each other.... But I feel for you! I will be praying for your sweet little Zuzu!

*Dream Weaver* said...

Dear Ashley,

I have been reading about little Zuzu and sharing her story with my husband and my best friend. Our hearts go out to you and your family.

I am in awe of your steadfast faith in God and I believe He will watch over dear Zuzu.

I pray that the operation will be a success and that many more lives will change because of this new procedure. I also pray that God will give you and your family the strength needed in the day to come, that He will watch over you and protect the doctors and all those who are in contact with Zuzu.

I can't help much, but I will be spreading your story on my FB pages and doing what I can for little Zuzu.

God bless and *hugs* and support all the way from Malaysia.

Joanne Wong

Deanna M. said...

I've rewritten my comment several times, not really knowing what to say. I just learned about Zuzu struggles and I've been praying for your family ever since. I wish I would make all your heartache go away. But for now, I'm sending you love, prayers, and encouragement.

Ana Luísa Chibante said...

Hello! I just read your testimony and I hope with all my heart that your daughter continues to be strong and courageous as it has been until now. It's a very touching story and a source of motivation for all the people who are going through similar situations or completely different, because his whole family conveys a lot of hope, faith and courage. May God bless you with lots of life and health! I'm from Portugal and I'll pass your message on Facebook seeking help and good thoughts! Ana Luisa Chibante

Latrice said...

Sending you all the hope and prayers I can spare. Love this little face and she is so enormously blessed to be apart of your family.
Latrice (a friend of lizzy)?

Julie Babb said...

Chris and Ash, This is a beautiful tribute to your sweet daughter. I am impressed at the strength and courage that you pocess to move forward and the strength you give to others. ZUZU is a beautiful addition to our family and we love her so much. I have seen her look at her mothers face with so much love. The surgery will go well and Zuzu has a huge fan club. I love you all.

Anonymous said...

i stumbled upon your blog and wanted to say that when i saw that headshot of zuzu my heart melted. i can feel her sweetness through her pictures! wishing you all the best and sending lots of prayers your way.