Zachary P. - Quilt Finished in 2008
Born: July 6, 2005
Illness: Hypoplastic Left Heart Syndrome, Stridor, Factor Five Deficiency
A Thank You From Zachary's Family!
April 28, 2008
Oh my word, we received the quilt on Saturday. I cannot even tell you how beautiful it is. Each squares hand stitched with love and when you hold it you can feel the love that went into it. Zachary is taking it to Philly with him to be covered in prayers and lvoe while he is taken into surger. Thank you so much to everyone that had a hand of love in the making of this quilt. Zachary's Family
Zachary P.'s Story
Written by Zachary's mom in January 2008
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 6, 2005 and I was not even allowed to hold him. He was whisked away for about 1 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, at that time I was wheeled into CICU 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 which allowed me to touch him. Then I was told by the doctors that came into the room 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 by 9 am we had our first update they are opening his chest, the next update was 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 CICU and the surgeon Dr. Spray would be in to see us. "everything went well, it was a wait and see with Zachary."
After 10 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 and Zachary passing the car seat test, also getting the medicine times down. Zachary was able to come home. Knowing in the back of our minds there were 2 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. Zachary has a personally and we have bonded. 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, Zachary was taken into surgery. He did great for this one and was home in a matter of 4 days. Zachary is outside of his heart defect, he only has been sick 4 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.
Zachary's third surgery will be coming in the spring of 2008 and things can happen. He may one day need a heart transplant, he may one day go into congestive heart failure, he may have a heart attack. We don't know what the future holds for Zachary, but we do know that we are blessed each day we have him and 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, 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.
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. But there is one thing I know... he is my son and I would give the world for him.
