| |
My
name is Tonya Byrnes and my daughter is Jessie Kristine Byrnes. I had a very
hard pregnancy. I tested positive for downs syndrome(1 in 10 chance), but
upon further tests found out that she was fine. I never did get very big and
my doctor just said I had a smaller baby, but he didn't realize how small.
I went into labor and started bleeding at 36 weeks. Labor was stopped, but
then the following week started again. A relief Doctor was in and decided to
do an ultrasound as she had never seen me and wanted to know what she was
dealing with before she did the c-section. Thank goodness she did. She
probably saved Jessie's life as she found out she was too small. Jessie had
a 3 minute d-cell so they decided to life flight me out to the nearest
hospital with a NICU, Rouge Valley Medical Center in Medford, Oregon. This
is where Jessie was born via emergency c-section at 12:19am on Dec 21,2007.
She was only 3lbs 10 ozs and 17 inches long. She stayed for 3 weeks. It was
during that time that we learned a large number of things about her. Her
heart murmur turned out to be a small ASD and a very large VSD. She has
agenesis of the corpus colosseum and her hypothalamus grew together in the
back section where the colosseum is missing. The doctor's tested her for a
syndrome, didn't think she had it, but tested anyway. She didn't have it,
but they were stunned to find that she has Mosaic Trisomy 13. This was
diagnosed when she was approx 4-5 weeks old.
Jessie had to have open heart surgery on March 11, 2008 at only 11 weeks
old. She had a very hard time in recovering at first. The first 4 days were
very critical, her body was shutting down, once it finally "woke-up" she
bounced back quickly. She's such an amazing fighter !! At the time of the
surgery. We had a biopsy done of her heart tissue. We just got the results
back and are once again shocked at the results. They found that she has a
Trisomy 16 in the heart muscle. Our cardiologist thinks it's a typo and is
following up to disprove it. Time will tell.
Jessie had
IUGR. I was 37 weeks when I delivered, but she was only at a 31.5 weeks
size. The Dr. caught it at a 17 week ultrasound, but said that I must be
wrong on my date of conception. I told him I used a digital monitor and knew
the exact day, but again, I was dismissed. That bothered me through the
whole pregnancy so when this all happened I actually wasn't as surprised as
I could have been.
Currently she is doing pretty well and just turned 5 months old. Her VSD was
a 7mm hole, it's now a 3mm hole. Her aortic arch has opened some, hopefully
it will open more by the next echo. Our biggest concern with her is that we
can't put weight on her. I would really like to know if any other parents
are having this problem or others. I would love to talk to anyone who has
info or wants info..
Tonya
My email address is jtbrnz@yahoo.com

|
|