Sunday, July 09, 2006

Hooper Family heart story from heart mom Melissa Hooper.

In February 2005 my husband and I found out we were going to have a baby boy with a congenital heart defect. The outcome was uncertain. We were asked to terminate. There was no way! We then got referred to Dr. Mooradian, the BEST cardiologist in Des Moines, Iowa. He explained to us that it would be a hard road. From the ultrasound they thought it was Hypoplastic Left Heart Syndrome. If this was indeed the diagnosis, he would require surgery shortly after birth and then two more if everything went as planned. Dr. Mooradian gave us three choices. We could have our baby here in Des Moines and have his surgery here at Mercy, we could go to Michigan, or we could go to the University of Iowa.

We made plans to go to the University of Iowa, tour the facilities, and meet the surgeon. After our visit we knew that was the place we needed to have our baby. Dr. Burkhart, the surgeon, was great and very willing to answer any of our questions. We felt very confidant in his abilities to perform the surgery and had nothing but wonderful things to say about the staff in the PICU that would take care of him during recovery. We appreciated his honesty and sincerity. We knew this would mean being away from our other two boys, Christian(6) and Jaxon(2) but we had to give our baby a fighting chance.

June 1, 2005, Dylan Mark Hooper was born. He was a beautiful baby. We got to see him for only a second before he was whisked away to the NICU. They got him stable and Jim was able to see him. It was a few hours before I was able to go in. The next few nights I would sneak away in the middle of the night and go into his room. It was OUR time; I would sing to him and tell him how much I loved him. A few days later we were transferred to the PICU so they could become familiar with Dylan and we could become familiar with them. It didn’t take long for us to know we had made the right decision to go there. The staff was great. Two nurses, April and Michelle, made sure I got to hold Dylan before surgery, June 9, 2005. I remember holding him for hours staring at his beautiful face, his sweet hands and his perfect, scar-free chest. The fear I had as I handed him over for surgery is indescribable.

The hours we spent in the waiting room seemed like an eternity. The staff (Trudy) kept calling to give updates on how he was doing, and when they were finally finished. When we got to see Dylan he was very purple, swollen and his chest had been left open. We could see our tiny little baby’s heart beating. It was very scary and relieving at the same time, he had made it through the first surgery but we knew we still had a long road ahead of us. The staff was wonderful they kept us very informed about everything they were doing for him.

We met some amazing people while we were there but after six weeks we were definitely ready to go home. Everyone made sure we felt comfortable with all of his medicines (seven to be exact) and how to use his feeding tube. We cannot say enough about everyone at the University of Iowa Hospitals.

We enjoyed having Dylan home and dreaded bringing Dylan back in October. Each time I have to give Dylan up to the anesthesiologists it gets harder and harder. He had the second open heart surgery October 27, 2005 and did great. We were home in a week! After bringing him home for the second time we felt so blessed. We enjoy every moment we have with our boys and try not to take a single moment for granted.

In December we had a cardiologist appointment and we were all (to include our doctor) very impressed with how well he was doing, Yeah Dylan! Unfortunately, three days later he had a cardiac arrest, December 26, 2005. Jim (dad) and Bev (grandma) did CPR while we waited for the ambulance to arrive. By this time they had gotten him to take a few breaths but he was still very critical. I road in the ambulance and all I remember is them yelling in the back “Come on, baby boy, come on!!” All I could do was pray. Everything is a blur to me from that point on. I know we pulled in to the hospital and there were people running everywhere! They got him stable and took him to a room in the PICU at Mercy Hospital in Des Moines, Iowa. Dylan was very swollen and by the next morning had a lot of fluid (chylothorax) in his chest. They inserted a chest tube and then a second one the following day.

A week after the arrest Dylan was transported back to Iowa City for a cardiac catheterization. It was a week after arriving in Iowa City that they prepared to do the “cath”. That morning Dylan looked great, the best he had since the arrest. He was smiling, laughing, and playing. It was great! Then they came in to intubate him for the catheterization, we were abruptly brought back to reality!

I naively went into this thinking everything would be fine, he looks so good, he is happy and playing. I was shocked to hear it did not look good and at that very moment they were not sure what they were going to do. The reality of possibly losing our baby was again overwhelming! That night I wrote this:

January 10, 2006 at 04:35 AM CST

I sit here awake and look at Dylan sleeping (albeit doped up on Ativan and Morphine). He looks so beautiful and peaceful! I think how can such a little baby endure so much?

I think back to when I first found out I was pregnant, the utter joy and excitement! Then the crashing terror last Feb. when we found out he wasn't "perfect", in who's eyes? Certainly not God's! We were asked to terminate our pregnancy. Not an option!!! Jim and I knew we had to meet this special baby.

So now I remind myself I only wanted to meet this PERFECT, SPECIAL baby! I have been blessed with SEVEN months!! He has taught me more in SEVEN months than I have learned in a lifetime!

1) Have FAITH he wasn't "supposed" to make it to delivery
2) LOVE anyone who has seen his smile can't help it
3) LIVE all though he has had many brushes with death he has fought to be here!
4) Laugh this one sometimes can be the hardest of all! Then I remember all the times he has tried to teach me this one: as I am shoving all his meds down his throat he SMILES at me, mere days after a cardiac arrest he SMILES, as his health is deteriating he SMILES, LAUGHS, and "DANCES" to his music therapy, and after all this he SMILES around his breathing tube at grandpa today! WHO am I? How can I be crying? He has been through so much and as if he knows a secret none of us do, HE SMILES!!!!!

So as I sit here with my blood shot eyes I'm going to make Dylan a promise as hard as it may be sometimes, Baby I promise to SMILE back!

This morning as I search for the Peace that my seven month old has already found I think of a story I read. A premature little girl was to fragile to be held by her parents for the first months of her life. Years later at a ballgame she asks her mom if she smells "that". Yes, it smells like rain. "No" the little girl replies "it smells like HIM when he holds you close!" As the little girl runs off to play the mothers eyes well up with tears as she realizes for all those months she was being HELD!

Dylan, thank you for all the lessons you have taught me, and all the joy you have given me! No matter what the future brings, know that I will always love you!

Love, Mommy

May we ALL find peace in HIM!

Thankfully the doctors have not given up on him! He has overcome two open heart surgeries, cardiac arrest, and seizures in his right hand and paralyses in his left hand and a not so good cardiac catheterization. After six (seems to be his number) weeks in the hospital, they sent us home on oxygen (oxygen therapy) to try to dilate his pulmonary arteries, one of the underlying problems.

April 5, 2006 we took Dylan back to Iowa City. They closed some extra vessels he had developed, one of which would allow him to shunt blood away from his lungs thus causing him to turn purple. They also checked his pulmonary arteries and to our relief they had grown, not enough, but they had grown. Dylan tolerated this procedure very well, we went home five days later! Dylan is doing great! He is still on oxygen and has a feeding tube but we are very thankful to have him home!

Dylan has taught me SO much in his short life and we are excitingly preparing to celebrate his 1st birthday! “CELEBRATION OF LIFE” silent auction/dinner will be held June 1, 2006 to celebrate Dylan’s strength. All the proceeds will go to a non-profit organization, Help-A-Heart. This foundation was co-founded by myself, Melissa Hooper and another “heart” mom, Emily Graber. We have both seen first-hand the financial burden having a child in the hospital can have. We were so blessed to have our communities rally around us, but realize not everyone is so lucky. It is our hearts desire to use this organization to help families of children born with congenital heart defects and going through open heart surgery. We hope by paying for their room at the hospital (Ronald McDonald House, Helen Rossi, hotel, etc.) and providing them with gift certificates for food that they may focus on the needs of their children.

June 1, 2006 will mark, not only, Dylan’s birthday but the Kick-off for our organization, Help-A-Heart. It was founded in honor of our boys, Dylan Hooper and Gabe Graber.

All our thanks and hope for the future,
The Hooper Family

Carepage: dylanhooper

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