We named our fifth child Winter Hope, because she was born in an ice storm, and our
hope was that she would grow to be another precious addition to our family, which
she has! It had become necessary, however, to "weather" our precious newborn, as
we soon came to understand the full meaning of "infant acid reflux." Winter Hope
was diagnosed with this disease when she was only 5 days old, after turning blue
several times and "throwing up" out her nose. At only 3 days old, she was placed
on an apnea monitor, in order to assist us in knowing when she was having difficulty
breathing. And so began our days of weathering Winter.
Our first months with Winter were lived in fear, with many questions, and hardly
any sleep. Winter was NEVER left alone, not even for a second--for that was all
it took, and we would get no warning of when she would suddenly be gasping and choking
for air. It took a few weeks before we were able to get used to the apnea monitor,
and we tried to find bits of sleep here and there out of pure exhaustion. But it
was never long before our own fears or the deafening sound of the alarm would awake
us. Many days and nights were repeatedly interupted with panic "rescues," as we
would race to suction out Winter's nose and mouth in order to allow her to breathe
again. Winter was put through numerous tests and prescribed reflux medicatons, but
nothing seemed to stop these sudden choking episodes, and frequent dark spells.
By four months of age, Winter would only have these episodes once a week or so. By
six months the episodes lessened to once a month, and on Winter's first birthday
we were given the wonderful news that she no longer needed the apnea monitor! We
seemed to have found the right diet and amount of medications to keep Winter's reflux
finally under control, and life began to calm down.
There are plenty of ups and downs, especially with Winter getting any illness (which
seemed to make her reflux get worse), and she was put back on the apnea monitor for
six months because of frequent "dark spells," and is now on a pulse ox monitor at
night after another scary episode this past summer (2002). In September of 2002
we had more testing done, and in October Winter had her tonsils and aednoids removed,
as we try to find answers to the sudden choking, gasping for air, dark spells, and
at times low oxygen levels at night. Although these struggles are much less frequent,
they continue to be a concern.
Despite our seeming never-ending quest for answers to Winter's continued struggles,
she is growing nicely and is a joy and blessing to our family. Winter Hope is our
"sunshine" on dark days, and our joy when discouragement comes.
No one can make us laugh like our Winter. Thank you, God, for Winter Hope!
Please know there is help for you if you are in any way dealing with emotional strains
in caring for a child with reflux or any other disease or handicap. There are people
who care, and there is a God who cares. Feel free to email me anytime, and I would
be happy to do what I can to help, or find the right people who can help. Thanks
for reading, and my best to you and yours!
There is no way we could have endured these highly emotional and trying years, had
it not been for a God who loves Winter and has seen fit to sustain life in her. For
a tired and weary Mom, my trust in this God has become a hard and difficult lesson,
yet indescribably valuable. The other source of human encouragement came from Cindi,
Dawn, Kim, Karen, Mary Grace, Cheryl, many other good friends at the support club
for parents of children with reflux on the internet, our church, and our families.
Their support, information, friendship, and prayers have helped us get through an
extremely difficult time. Thank you all! And thank you, God, for Winter Hope!