|This is a story of a real Angel. This little angel went to Heaven on July 9th, 2006.
And will be forever missed but always remembered by so many, many people. I
would like to thank Tara and Jeff, Hunter and Angel Reese for being a part of my life.
You are all in my heart and prayers.
On this evening of June 30th, 2006 we find ourselves desperate to search for answers to help save our baby girl’s life.
Since the day she was born, mountains have been moved and miracles have taken place. For these reasons, we are
eager and anxious to write….We only hope whoever is reading this feels motivated to help find an answer for our
daughter that wants to live.
Reese Alexandra Gray was born on February 4th 2006. I had her prematurely at 30 weeks without any knowledge of
how sick she was. My 20 week ultrasound showed that everything was right on track and we had a healthy baby girl to
arrive 20 weeks later. On the evening of February 3rd I knew I was going into labor. Prior to performing the emergency
C-section, the doctors tried medications to prevent premature birth but Reese didn’t respond to any of those medications
because she knew the only way she was going to make it in this world was to get out. Before being wheeled into the
operating room, the doctors prepared us for the worse. Reese had a very slim chance of making it. We can remember
everything happening so fast and the only emotion we felt was fear of never holding our baby girl alive.
The first sign of Reese's strong will to live was at delivery when she beat all the odds and was delivered alive. At the time
of delivery, over 400 ml’s of fluid was taken off of her severely hydropic body. All we knew was that she was full of fluid.
Little did we know how sick she really was. Our only other pregnancy was routine, and we feel so blessed to have our
healthy, full-of-life 2 yr. old boy in our lives.
Reese was born with non-immune hydrops. The cause is yet still unknown. She was immediately placed on a high
frequency ventilator to help her breath and maintain positive pressure in her lungs to try and prevent collapsing. Reese
developed chylothorax and has had up to three different chest tubes in her little body. She was dumping up to 800 cc’s of
fluid out of her tiny chest cavity almost every day. Reese has received albumin, plasma, blood, steroids, and countless
other life sustaining measures to keep her alive.
Despite her poor prognosis and all odds, Reese has not given up, and it was her fight and will to live that gave us all,
including her doctors and nursing staff in the NICU, hope and determination to go to the ends of the earth to save her.
How could anyone do any less when a baby fights to live like Reese?
After one month in NICU, Reese was moved to her own private NICU room, where she currently remains. Reese
continued to drain massive amounts of fluid from her body. She was a little over a month old and we still had never seen
her open her eyes. Exactly 36 days post delivery we were prepared to say good-bye to our baby girl. Reese was so full
of fluid there was no more room for it to go and not enough strength for her to breath with the pressure. She was so
severely swollen that she had to have surgery to place an IV close to her heart. As her parents, we wanted to poke her
with a needle to allow the fluid to exit. With that thought, her doctor decided to put a 20-gauge IV in her scalp. This is
truly the only thing that saved our baby girl’s life and currently is what still keeps her alive. That night we saw Reese’s
respiratory status improve and her vital signs go up.
From that day and now 5 months later Reese continues on her path of daily ups and downs, but her condition continues
to improve and her doctors stay amazed. Reese finally made it off the high frequency ventilator and onto a conventional
ventilator, but it took many attempts for it to give her the support she needed. She then went from conventional
ventilator to a cpap machine (continuous positive airway pressure) and then from the cpap machine to high flow nasal
canula. The thought of her ever getting extubated was thought impossible, but yet she is now on high flow (1-2 liters.)
During this long struggle, we have had to prepare ourselves on several different occasions to say our good bye’s to our
baby girl. The one we want to share is nothing less than a miracle. Reese was having a severe GI bleed. She was
bleeding from the mouth and rectum. This was all fresh blood and we had two choices as parents. We could watch our
daughter bleed to death or we could transport her to have an emergency endoscopy as a 3lb baby. She had proved
everyone wrong from the moment she was born and we weren't giving up on the hope that she would do it again. The
neonatal transport team arrived to take Reese to an alternate hospital for the endoscopy. In the ambulance on the way
to the hospital where she would have the endoscopy, Reese was still bleeding from her mouth. We followed in the car
behind the ambulance, and prayed for a miracle. When we arrived and were briefed by the attending physicians, we were
told that there was a high probability she would not make it. The minute they sedated her and started the procedure,
there wasn’t any blood to be found. To make a long story short, there hasn’t been any blood since that day. The doctors
could not medically explain what happened and we feel that God was telling us then that Reese is here for a reason and
He has a plan.
All of Reese’s major organs are functioning properly. Reese has received an MRI, 4 echocardiogram’s, 2
lymphscintigraphys, and a ct scan. The results of the lymphscintigraphy indicate that from the waist up, Reese’s lymphatic
system is not functioning properly. We are not exactly sure if it’s underdeveloped, if there is a block or if she is missing
something vital in her lymph system. A person’s lymphatic system is extremely complex and cannot even been seen with
an MRI. We have contacted and consulted with some of the most respected doctors and specialists throughout the US
and the world. Based on symptoms alone, with no test available so far to confirm, our best diagnosis of Reese is possibly
congenital generalized lymphangeictasia or congenital hypoplasia of the lymphatic system, primary to non-immune
hydrops and congenital chylothorax – in layman's terms a severe disorder of her lymphatic system. There is no case study
or clinical research to follow because there has never been a premature infant to survive. Currently, Reese drains from her
scalp anywhere from 300-600’s cc’s of fluid per 24hr period. She loses a tremendous amount of protein, and requires 75%
replacement of components that drain from her scalp. Her kidney functions fluctuate every day, and she receives multiple
infusions of different types to help maintain metabolic stability. Reese’s lymphocyte count is anywhere from 0-7, meaning
her immune system is very weak. It is very similar to an individual with full blown AIDS and their suppressed immune
system. My husband and I purchased a centrifuge machine and tried to spin down breast milk for Reese so she could eat
normally, but the fat count was still too high for her body to digest. She currently is eating portagen, when feeling well.
She’s been known to eat a 60ml bottle in a matter of 20 minutes. With Reese’s immensely suppressed immune system
she has amazingly contracted only 2 infections and one we are not confident that she truly had. According to most doctors
there is no answer or explanation to this either. Reese’s current condition will never allow her to come home where she
belongs. Metabolically she is very unstable, and she will never be able to receive the amount of albumin she requires.
Yet, we are still filled with hope. Speaking of moving mountains, this amazing baby girl of ours is now socially smiling and
cooing with others. Reese is “with it”, which makes her loved ones only fight for her life even stronger. One day we hope
Reese will know the impact she has had and still has on everyone that has met her and even the ones that have not.
Reese has compelled me to do this. Her eyes tell the story and we feel a need to get her story out in hopes that
someone will have experienced this illness or know of someone that can help us. The many doctors’ that have seen or
discussed her complex illness don’t know how she is alive or how to fix her. Does she have lymphageictasia? Does she
have a thoracic disorder? How severely disrupted is her lymphatic system? What tests yet need to be done and what
things can we do to fix her problem? If nothing else, maybe our baby girl was put on this earth to help other babies with
this horrific illness we don’t know about.
We pray that whoever is reading this will take this story to heart. This little girl has touched the lives of countless
people. Her courage and strength have inspired everyone. Think of Reese as an angel that is here to make a difference in
people’s lives. Wouldn’t it be amazing if the person reading this could be apart of Reese’s journey?
Thank you for your time, Reese is forever grateful.
Jeff and Tara Gray