Ryan's Corner

Together is a very
grand thing to be...

On June 17th, 2000, I witnessed the birth of my second grandson Ryan at White Plains Hospital. He was born at 9:32 in the morning, weighing in at 6 lb. 9 oz. He was beautiful, wide awake and had the most incredible amount of jet black hair. He looked nothing like his older brother Tristan, who is 5. He looked just like his Daddy�s side of the family.
He was born on the day I had a baby shower planned for his Mom.
Of course, I had to cancel.

Even very small pleasures bring very great joy

Ryan was having trouble feeding the first two days in the hospital, my daughter and I questioned this, but were told it was quite normal for babies to have to learn how to feed. The Monday after he was born , he was supposed to be released from the hospital. My daughter was waiting to get him back from the nursery when her Doctor came in and said that something was wrong with Ryan, he crashed and was on life support. I received a frantic phone call at work from my daughter, telling me something was very wrong. My husband and I rushed to the hospital and were just in time to hear a doctor tell my daughter that something was wrong with Ryan�s heart and that most probably he would die. What a shock, and what a lack of bedside manners. After about an hour, a wonderful doctor named Dr. Haley came in to talk to us. He told us that Ryan was very sick, and if it wasn�t for the quick action of a nurse who was there and was a cardiac nurse, Ryan would not have been here at this time. He told us that he thought Ryan had something called Hypoplastic Left Heart Syndrome, a congenital heart defect, which meant a broken heart. He told us a little about it, and that Ryan was being transferred immediately to Babies Hospital at Columbia Presbyterian. We were all allowed to go and be with Ryan until he left. It was a nightmare that we all wanted to wake up from. I remember crying, trying to touch him wherever I could find a place on his little body that did not have a tube or something on it. I told him stories through my tears about his family, and how we all needed him to get better. I could not even look at my husband, daughter or son in law. Their pain was too much for me to bear along with my own. What a helpless feeling.

Some people care too much. I think it�s called love.

Little Boy kneels at the foot of the bed,
Droops on the little hands little gold head.
Hush! Hush! Whisper who dares!
Christopher Robin is saying his prayers.

God bless Mummy. I know that's right.
Wasn't it fun in the bath tonight?
The cold is so cold, and the hot is so hot.
Oh! God bless Daddy-- I quite forgot.

If I open my fingers a little bit more,
I can see Nanny's dressing-gown on the door.
It's a beautiful blue, but it hasn't a hood.
Oh! God bless Nanny and make her good.

Mine has a hood, and I lie in bed,
And pull the hood right over my head,
And I shut my eyes, and I curl up small,
And nobody knows that I'm not there at all.

Oh! Thank you, God, for a lovely day.
And what was the other I had to say?
I said "Bless Daddy," so what can it be?
Oh! Now I remember. God bless Me.

Little Boy kneels at the foot of the bed,
Droops on the little hands little gold head.
Hush! Hush! Whisper who dares!
Christopher Robin is saying his prayers.
---AA Milne

After many discussions with the doctors, we learned that the treatment for this defect is a procedure called the Norwood Procedure. It involves three surgeries during the first two years of life, and what it does is change a 4 chamber heart (2 of which don�t work on HLHS babies), into a 2 chambered heart that does all the work.

Ryan had his first surgery on June 23rd. Dr. Mosca was his surgeon and his cardiologist is Dr. Snyder. He did very well with this surgery and on June 30th, he was sent back to White Plains Hospital to recuperate. He had almost one on one care from many lovely nurses at WPH. They were our life savers. On July 24th, my 27th wedding anniversary, my beautiful grandson came home from the hospital. What a wonderful feeling!

It just shows what can be done by taking a little trouble...

Ryan continued to do well, and was scheduled for a heart cath on Nov 2nd. He was admitted on Nov 1st, had his cath on the 2nd, and due to complications with scar tissue forming and cutting off his oxygen, he had his hemi fontan on Nov 6th. This time he wasn�t as lucky as the 1st surgery and had a few complications. He was able to come home on Nov. 20th. It took a while for this normally happy baby to be his self again, but is now doing just great. He has always eaten well, never needed a feeding tube, eats all types of baby food. He flips over , is starting to sit on his own, walks in his walker, not at a full pace, but pushes forward and back. He is always happy, and says Mama all the time!!!

He is truly our miracle baby, and is loved so much by his whole family. I do not know how we will hand him over for his final surgery, but with the help of God, we will make it.

Promise me you�ll always remember: you�re braver than you believe and stronger than you seem and smarter than you think.

A bear with very small brain but very large heart...

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The characters/images/text from The Complete Tales of Winnie-the-Pooh are copyright by one or more of the following: Dutton Children's Books, Disney, and Trustees of the Pooh Poperties. The original characters were created/illustrated by A. A. Milne and Ernest H.Shepard. This site is not connected to, or endorsed by Dutton Children's Books, Disney, or Trustees of the Pooh Properties.