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My name is Tricia Lyons and we lost our little angel boy about 10 weeks ago.
He was diagnosed with Full Trisomy 13. He lived 9 wonderful days!!
Cody was born on September 18, 2008 at 6:01 am. He was beautiful. Around 23
weeks of my pregnancy, I decided to get a 3D/4D ultrasound for fun for
Mother's Day. The technician did notice that he was going to have a cleft
lip/cleft palate and we learned to deal with that. But what I learned a few
days after his birth would change my life forever. After about an hour after
being delivered, he required some oxygen and was taken away and given an
oxygen "box". Since we live in a small town in Ohio, the hospital was not
equipped to deal with the cleft lip/palate ordeal so my doctor decided to
transfer him to a bigger hospital. He was life flighted due to needing
oxygen and I still had no idea there was anything wrong with him.
Luckily, my doctor released me that day and off to the NICU we went. Later
that night Cody did not require any oxygen but the doctor's noticed his
sugar levels were off so gave him an IV to help with that issue. I know that
the doctors knew right off the bat that Cody had a Trisomy but didn't say
anything until they were 100% sure. One nurse did mention that Cody most
likely had a Trisomy but for me not to Google it on the internet- well I
didn't listen and to my surprise, I didn't like what I saw. I confronted the
nurses the next day and they agreed but until they got the test results back
didn't want to "worry" us.
After 4 days in the NICU, the tests results came back with Full Trisomy 13.
We met with all the doctors and they were optimistic that Cody would be one
of those that could make it months and possibly years. His heart had a few
holes but were closing on their own so they weren't too concerned with that.
We were told as soon as they could control his sugar, we could take him
home.
 Now
my husband and I knew that if we were to take Cody home, we would have
obstacles. The genetics doctor explained that most likely he probably would
never walk, talk. and even see but we were ok with that. Well, after 8 days
in the NICU, Cody's heart rate started to race and was in the 200's. His
little belly started to not tolerate his feedings and we were told this was
probably the beginning of the end.
That night, I told Cody that I loved him and that it was ok for him to "go".
I didn't want him to suffer anymore. The next morning, we got a phone call
at 5:00 am saying Cody needed us to sit with him and that's when my husband
told him that he loved him and didn't want him to suffer anymore and it was
ok to "let go". Saturday, September 27, 2008 at 2:00 pm, Cody became our
little angel.
We just held him for hours and hours and cried. Walking away from the NICU
without my little baby was indeed the hardest thing I have ever been
through.
We already have 2 daughters. Caitlyn is 6 and Ashlee is 3 1/2. They spent
several days reading to him, singing to him and rocking him. They were SO
excited to be getting a brother. They couldn't wait for him to come home.
Trying to explain to them that Cody was very sick and wouldn't be coming
home was devastating.
Those 9 days were such a blur since we had no idea anything was wrong with
him. I feel for all you parents who have lost a little one due to this
disease. Every day, I wonder "why" this happened to my family but I know
that God had a plan. Cody isn't in pain anymore. With the holidays
approaching makes it even harder. We try to be strong for our girls and we
are very thankful for them but there is still a void in my life. It
definitely has made my family stronger and a lot closer. My life will never
be the same!
Tricia
mtlyons@hughes.net
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