Doctors have come from distant cities
just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
God's own creation
and as far as they see they can offer
Oh, I believe
Fate smiled and Destiny
Laughed as she came to my cradle
"Know this child will be able"
laughed as she came to my mother
"No, this child will not suffer"
laughed as my body she lifted
"Know this child will be gifted
with love, with patience, and with faith
he'll make his way"
~"Wonder", by Natalie Merchant, with lyrics altered by me
Having the honor of feeling like I am right there with the Hawk family as this miracle has unfolded has been the best gift of Christmas that I have ever had.
God bless this wonderful family. God bless the selfless donor family. God bless the wonderful giving persons on this forum... those who donated auction items, those who bid on the auctions, stallion owners and bidders, those who worked so hard on the graphics and websites and keeping up with the bidding. God bless the nurses and doctors and techs and the transplant team... the list is endless!
In these days of rushing, selfishness and stress, this entire event and family prove that selfless acts of kindness and love still will win out.
Please God, bless and protect Aiden. He brought us all together for a purpose bigger than any one of us, alone.
Merry Christmas to everyone!
Breeder of Holsteiner and Oldenburg prospects. Oakleigh Sporthorses
This is GREAT news!! We'll keep jingling here!! Woodie, GlitterMill and I hope that the Hawks have a PEACEFUL and RESTFUL Holiday!! This is soo AMAZING!! I'm in awe at the courage they've show during this tough time and I know I'll NEVER forget it!!
to ALL of you.......the Hawk family, Knowonderwoman, the transplant team, the donor family..........WE DID IT! I believe in miracles, for sure, but I also believe in the power of prayer and positive thinking....and feel certain that they have significant input in miracles.
Aiden's wonderful second chance at a healthy life brings tears to my eyes too...especially from the perspective of a grandmother of a two year old boy who is dying from an untreatable genetic disease. It seems to magnify the importance of a baby's life, and to put extra emphasis on the thought of being able to participate fully in it.
But, from the same perspective, I cannot say strongly enough how important a support team is, nor have I ever seen one to equal this. You people need to pat yourselves on the back, sign that donor card, and keep up the good thoughts and prayers. You have gotten Aidem this far, and I know you will get him the rest of the way.
Finally got my lap top up and running. (Lisa, Joey and Aiden are here sending you this update and Christmas message)
As we sit here in the ICU room, I can hear the beeps of his 17 monitors and pumps. There is a soft blow of oxygen pumping to my litle baby giving him the strength he needs. It is Christmas eve and we sit here looking at the Christmas gift we have hoped for, for months.
When I found out I was pregnant, I was so excited. Most of you remember my not-so sly post about how I should tell my husband I was expecting. I was to give him a son. I did not know he would have this amazing grin, and I didn't know he would be so special. I did know my hopes and dreams for him were endless.
When I went into labor, Aiden and I were a team. I went into the hospital on a Wednesday and Finally that stubon perfect baby was born on the Friday. April 19th. I remember holding him and looking at his beautiful skin. He was like a china doll. SO white and rosy. By day two the tones changed and my baby was not going home. They told us that he had jaundice. Well I was sad that I was discharged and he wasn't, but I knew jaundice was not a big deal, so we just waited paitently for the now yellow baby to come home and turn back to that pink and white baby I held at birth. When the doctors came in and told us that he was sick, but they didn't know what it was, I was scared. Then I asked the question that still rings in my ears. I asked, "Could it be fatal?" Then our specialist looked at me and said yes. He said, "If Aiden has this rare disease his only chance at life will be from the gift of another. He will need a transplant to live. He probably won't make it past the first birthday with out it."
Joey and I cried. I remember crying and crying. I was so furious and angry I even tried to kick the wall with my foot. OUCH! Not such a good idea since I had no shoes on. It was just too overwhelming. I was this new Mommy trying to fgure out nursing and how to COVER the pee pee with out getting sprayed. Instead they were telling me I was now the mommy of a child with special needs.
It seems like I never heard good news from that day forward. Joey and I kept hoping that he didn't have Biliary Atresia, but he did. He had it, and he was very sick. (notice I say HAD) I held my son through infections. I laughed as I watched in his first bath time. I was there when he had surgeries. I even held him in the back of a speeding ambulance with blood covering my sweet child.
Through all of this I shared with my friends online. I told them of our struggles and of our little victories. Aiden inspired people to comitt to organ donation and inspired people to have faith. Every step of the way I was able to share that first jar of carrots and the first time his PELD score was bumped to the top of the list. What a ride. I am so glad you have taken it with me.
But now here we are. Months have gone by while I waited to see that little new born with his pink and white skin. As a new mother I craved him. I needed to see that vision of health. I wanted him to come back to me. December 21st, 2002 my son was reborn. He was given a fresh new start. He is now my pink little angel all over again. He is finally home in his mommy's arms. He is back. I promised him I would get him healthy, and we did it. He is back. No more cholangitis. No more bleeds. No more disease, and no more talk of seeing his Lord in Heaven. No more talk of him leaving us too soon. My sweet mittle baby is now in my arms and he is the one I have loved though all of this, and the one I am now going to be blessed to have for the rest of my life.
Things are not easy right now. I have seen him drop in his oxygen twice now, He cries in pain, and he has a long road of recovery. His fight is changing, but also just begining. I know we are up to the challange. And our faith and love as a family is now stronger.
Last Christmas, I remember hoping that the child I carried would be blessed and have a full rich life. God gave me my Christmas wish. I want to hold him and take his pain from him. But like the other bumps and problems, this too shall pass.
God bless our donor family. May their special angel be sitting on the lap of Christ watching over my son with a smile. Thank you for my beautiful COTH friends. Thank you for helping me fight this battle. The war is not over with. Let's hope for him to be awake and alert soon. Hope for no more pain, and pray for no rejection or infection.
I will kiss him and tell him How special everyone thinks he is. I will tell him all of the beautiful things you say. I will begin on page 1, telling him about his gift of life.
OHHHH wait.. DO I hear bells jingeling? Oh yes! I think I see Santa! Hey Santa, no need to come down this chimney, You gave us our gift. Our precious Aiden has come back to us.
Just got back from Christmas Eve with the family, and I am THRILLED to hear this wonderful news!! [img]/infopop/emoticons/icon_biggrin.gif[/img] This is seriously the best Christmas present I will get this year, hands down. [img]/infopop/emoticons/icon_wink.gif[/img]
Lisa, after I return from Charleston, I really want to pop by the hospital and see you and Joey, and hopefully, since miracles seem to be happening alot lately [img]/infopop/emoticons/icon_wink.gif[/img], Aiden will be out of PICU and I might catch a glimpse of him! [img]/infopop/emoticons/icon_biggrin.gif[/img] I'll drop you an e-mail when I'm not completely overindulged with beef tenderloin and red velvet cake. [img]/infopop/emoticons/icon_razz.gif[/img]
~Disgruntled College Students Clique~Georgia Clique~Junior Clique (Can I please still be a member?? [img]/infopop/emoticons/icon_razz.gif[/img] )~ Buckle Bunnies [img]/infopop/emoticons/icon_biggrin.gif[/img]
~Disgruntled College Students Clique~Georgia Clique~
Oh Lisa, you do have the best chrismas gift ever! I have never posted yet just been reading and PRAYING! I cant not tell you how happy I was when I heard that he was getting his new "gift", When I am at "LuckyDucks" barn I ask her all the time what the latest on Aiden is. And as soon as I wake up and go to bed I always say a prayer for YOU and your family.
As soon as he has his own room, LuckyDuck and I are coming to see you and your sweet Aiden.
You have such an incredible way with words. As I sat here, reading your note to my mother, tears were running down both of our faces. Not a single one of us have every doubted that Aiden would be able to fight through this. How could he be anything but strong with parents like you and Joey. Thank you so much for sharing this with all of us. I know that it has touched my life in ways I could never have imagined.
You have brought me to tears, your courage and faith have so touched my heart. This in turn has given me faith in my own life, to face challenges, to take whatever comes and always FIGHT!
Merry Christmas Hawk Family...and Merry Christmas to everyone on the board who has shown such faith and determination that this little boy make it.
\"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up
I found this info on the web site for Cinti children's and thought it was ironic.
Perhaps one day there will no more babies that will have to go through what Aiden and the Hawks have had the courage to face.
October 31, 2002:
Cincinnati Children's Earns NIH Grant for Biliary Atresia Center
Grant Underscores Status As Leading Liver Care Center
CINCINNATI -- Cincinnati Children's Hospital Medical Center has received a five-year grant of approximately $845,000 from the National Institutes of Health (NIH) to establish a Center for Biliary Atresia â€“ a life-threatening condition that is the main reason for liver transplantation in children.
Cincinnati Children's is one of only nine sites in the nation to receive funding to establish a Center for Biliary Atresia. All nine institutions will collaborate as part of a nationwide Biliary Atresia Research Consortium that will establish a database of clinical information and serum and tissue samples from children with biliary atresia.
Cincinnati Children's Center for Biliary Atresia will be directed by Jorge Bezerra, MD, a physician/researcher in the division of Gastroenterology, Hepatology and Nutrition.
Biliary atresia occurs in infants and usually becomes evident two to eight weeks after birth. Symptoms include unexplained jaundice, dark urine, clay-colored stools and weight loss. The disease destroys bile ducts in the liver, trapping bile and rapidly causing damage and scarring to liver cells.
Biliary atresia accounts for up to 60 percent of children who undergo liver transplantation. Although surgery (Kasai procedure) is successful in many infants, three of every four children who have biliary atresia need a liver transplant before the age of 20.
"The cause of biliary atresia is unknown, and the total annual cost, including transplant care, of treating infants with biliary atresia is estimated to be $65 million," says Dr. Bezerra. "Increased understand of the pathogenesis of biliary atresia and the development of novel therapeutics to treat it would have a major impact on children's health and medical economics in the United States."
Dr.Bezerra will be the principal investigator of two research protocols:
A one-year study will explore the potential regulatory role of immunity genes in the pathogenesis of biliary atresia. The suppression of these genes may be temporarily restricted to the first three months of life in infants with biliary atresia, according to Dr. Bezerra.
A three-year study will determine the effectiveness of steroids on the outcome of infants with biliary atresia. It is believed that steroids may improve bile drainage after a Kasai procedure.
What a wonderful way to spend this christmas... ready to start brand spankin' new with a full life ahead! I am sooooo relieved to see this great news since when I last checked, Aiden was still in surgery.
Truly a Christmas Miracle! [img]/infopop/emoticons/icon_biggrin.gif[/img]
Show goals achieved & Sass is in foal! 6 months down... about 5 more to go.
We've got STANLEY! Wings Rock!
*bad shoulder clique * Member of "OMGiH, I loff my Mare" Clique! * Proud owner of a CANTER Cutie! My Horses; COMH Page; My Blog