Birthday
July 6th 2005

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Medical:
Born July 6th 2005 born with HLHS first surgery July 8, 2005 second Dec 2005 Third surgery June 2008

Zachary story

At 24 weeks pregnant I was told that my first born son was going to be born with a very serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). What a shock for a first time mother to know that your child may not make it. I was given three options:
1- abort my son,
2- compassion care, and
3- surgery (3 of them).
Never in my mind did I think of the first two options. It was going to be the three surgeries. I love my son.

So my adventure begins. I had to deliver Zachary in Philadelphia which meant being down there for 2 weeks before he was born. I live 2½ hours from Philly. So alone..

Thank God my mother has never left my side and has always been there for both myself and Zachary. Zachary was born on July 6th, 2005 and I was not even allowed to hold him. He was whisked away for about one hour, which seemed like forever to a new mom. Then he was brought back into my room in what is called a warmer. I was only allowed to look at him.

Zachary was then taken right next door to Children's Hospital of Philadelphia (CHOP). I was not allowed to see him until the next day. Then I was wheeled into PICU with my mother and I just cried and cried. My son was hooked up to anything you could think of to keep him alive. He had a wonderful nurse, who allowed me to touch him. Then I was told by the doctors, that his first surgery was to be on July 8th, at 7:30 am. I think my heart stopped. I was packed with so much information and had to sign so many papers; my head was spinning.

I was at the hospital the next morning at 6 am, and the nurses let me hold my son for the first time that day. Tears just came running down my face. Was this the first and last time? No one knew. Zachary was taken into surgery at 7:30 am and by 9 am we had our first update. They were opening his chest. The next update was that they were putting him on the heart/lung bypass. Finally, later in the day, the nurse came into the waiting room and told us the surgery was over. Zachary did great. He would be coming back to PICU and the surgeon Dr. Spray would be in to see us. Everything went well, it was a wait and see with Zachary.

After ten days in the hospital, Zachary was learning to drink his bottle and master the suck swallow breath. Myself and my mother learning CPR, inserting a feeding tube, getting the medicine times down and Zachary passing the car seat test. Zachary was able to come home. Knowing in the back of our minds there were two more surgeries to have yet.

The five months he was home, he did great, he thrived and we worked with therapy for him to enjoy life. There was so much you could not do, like hold him against your chest so we had to burp him sitting up, but we got through it. Then the second surgery date came.
How do I hand my son over to the surgeon again? Many tears and hugs... many late nights just holding my baby.

The time came December 15th, 2005 and Zachary was taken into his second surgery. He did great for this one and was home in a matter of four days. Besides his heart defect, he only has been sick four times with ear infections. Zachary sees many doctors as he has several underlying conditions. Factor Five Leiden, Stridor, and the left side of his vocal chords are paralyzed. He sees a cardiologist which he will see for the rest of his life, a hematologist, an ENT and also his pediatrician.

From the second surgery up until the third, Zachary had a couple of problems, so he was hospitalized over night.

Then after many doctor appointments the third surgery date was set June 2nd, 2008. Everything started flashing through our heads: Is he going to be ok ? How long of a hospital stay? Will he forget how to talk or walk? Will there be any seizures ? Will Zachary have a stroke or heart attack? Will he make it off the table?
It blows your mind just thinking of all that can go wrong. The day came.... crying but trying to stay strong for Zachary, yet losing it inside.

Zachary was in surgery for six hours which seemed forever. The nurse took us into a small room to wait for the doctor to come talk to us. “Everything went fine. Zachary is back in his room getting settled”. What a relief to hear those words!

We went back to see Zachary and the tears just went loose. As we were getting ready to leave the room, Zachary started shaking. I could not move because I thought he was having a seizure. The nurses reassured us that he was just fighting sedation. I still did not move. I wanted to make sure he was okay. The next day Zachary was up and wanting to eat; what a kid ! He is so strong and a hero in my eyes. He was home in record time - five days once again.

He did have fluid around his heart but we saw the cardiologist two days after he got home and she gave him something to help get that off which helped a lot.

We don't know what the future holds for Zachary. He may one day need a heart transplant, he may one day go into congestive heart failure, he may have a heart attack. But we do know that we are blessed each day we have him. His smile and personality will melt your heart.

Zachary will never be able to play contact sports, he will have to learn his limits and when he is tired of playing, he will have to learn to rest. Zachary wears a helmet when he is riding his Power Wheel because if he falls, he can get a blood clot or bleed really bad.

Zachary loves people and he loves his family

He is such a happy happy little boy and to look at him you would not know there is anything wrong with him.

Zachary now goes to head start school. He is around other children his age and his teacher said he is doing great (we knew he would; we were the ones who were nervous).

We have been truly blessed and we thank God everyday for Zachary. We don’t know what his future holds but we also don’t know what the future holds for anyone. We are thankful for Zachary being as strong as he is and really not having any problems. I have a great family and a great extended family that love me and my son very much. My mom has been my strength. My mom's best friend and her daughter have always been there for us, my sisters and their spouses.
Our story is a never ending story because these kids are making medical history and paving the way for future children.
There is one thing I know... he is my son and I would give the world for him.