Just some background for those who don't already know her story... (those who do can skip this...some of you lived it with me and for others I know I've told it many, many times before but it is one of the true miracles of OUR lives).
This was posted to the Caringbridge site we put up when she was born.
Our Story
Our family was
thrilled when we found out we were expecting our third child. At 16 weeks, we
went in for an ultrasound, debating about whether to find out the sex of the
baby, and suddenly the sonographer got very quiet. She said she didn't like how
'still' the baby was and that it appeared she had some abnormalities with her
legs. She called in the perinatologist and that is when we first heard the term
'arthrogryposis'.
Arthrogryposis (as defined by Wikipedia),
"also known as Arthrogryposis Multiplex Congenita, is a rare congenital
disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis. It is a non-progressive disease. Frequently, the
contractures are accompanied by muscle weakness, which further limits
movement".
Other issues that set off alarms were the clubfeet
she clearly had and dislocated hips. They were also concerned about the
position of her hands and wrists.
All these red flags threw us into hell. They
talked about Trisomy 18, Trisomy 13, Spinal Muscular Atrophy and about 30 other
possible diseases and syndromes that were all fatal. They were sure that
whatever is causing the arthrogryposis was going to rear its ugly head in other
more lethal ways. I had numerous ultrasounds, an amniocentesis, a fetal echo
and a fetal MRI (yes, the do an MRI on the baby while she was still in the
womb)!
With each test, we dodge more bad news. With the
exception of her lack of limb movement, she was doing great. The good news was
that they couldn't tell us what was causing the joint issues....the bad news
was they couldn't tell us what was causing the joint issues...
However, some of the real scary possibilities were
ruled OUT. We took that as a sign and decided to have 'Faith' that she would be
ok. Yes, among all that medical tests and jargon, we found out we were having a
little girl. Lauryn 'Faith' was definitely going to be part of our lives.
The rest of the pregnancy was normal, until we got
to 36 weeks. We went for our normal routine ultrasound and had another quiet
sonographer. This time they said she appeared ok, but stopped growing 3 weeks
ago. She was only measuring 4 lbs and they wanted her out. Children's National
Medical Center was put on stand by in case they had to medivac her and our
family prepared for her arrival. They told me to prepare for the possibility of
her spending a long time in the NICU.
Lauryn Faith was born on August 15, 2008 at 8:08
am. She weighed in at a 'hefty' 5lbs 1 oz - a full pound heavier than the
anticipated. She did spend 2 days in the NICU because of fluid in her
lungs and she clearly had problems with all four limbs. However, she was
breathing on her own, healthy and had no other issues! She was holding her head
up in the NICU and was clearly stronger than they anticipated - even fighting
with the nurses about her tubes. They
told us then we had a ‘feisty one’.
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| Look at her father's thumb compared to her foot! So small... |
We went from Shady Grove Adventist straight into DC
to Children's National Medical Center where they did an ultrasound and x-ray
and confirmed that her hips were both dislocated and she was given her first
set of long leg casts (thigh to toes) to start serial casting for her club
feet.
Over her first 5 months, she went through about 10 weeks of long leg casts, her first tenotomy (‘nicking’ or clipping the achilles heel tendon) at 6 1/2 weeks, braces and therapies. She was also given wrist braces to straighten out her hands. We were sent home to 'grow' her for her next set of surgeries and treatments.
We hold out hope that one day soon, Lauryn will be
toddling around this house chasing her brothers. She is truly our miracle baby
and we are blessed that she is part of us.
Well since then, she has had bilateral open reduction hip surgery (@6 months), a spica cast for about 12 weeks (Chest to toes body cast), a trip to Iowa for a consult with the Ponseti Clinic, an Archilles tenotomy on both feet twice. By the time she was two, I counted that she had spent just as much time IN casts as she did OUT of casts. However, it paid off. She has been walking indepently for over two years now and is very, very healthy.
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| First set of casts 3 days after being born |
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| Hip Surgery at 6 months old |
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| Still smiling with Spica Cast at Easter |
We finally we transfered to Shriner's Hospital in Philadelphia where she has been treated for the last three years. Each year her feet have regressed - rotating inward. We have had to go through another round of Ponseti serial casting. Serial casting is manipulating and stretching the foot to the direction it SHOULD be, and away for the direction it WANTS to be. Each week she is stretched and then a leg cast from her hip to toes is placed on each leg to maintain the stretch.
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| After hips were done, back to working on those darn feet... |
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| Learning to bath with casts on...fun! |
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| Dancing at Disney World @ 2 1/2 |
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| Theraputic Horsebackriding at 4 years - favorite thing in the whole world! |
Starting Monday, she will begin her next step in her journey. I will post more later with pictures and description of what is to come...
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