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 I
decided it was time to update her album because so many wonderful people
have been emailing me to see how Jessie's doing.
We've had our up and downs this year. She "popped" a stitch in her heart
patch last summer that found her back in the hospital and on her medication.
Her cardiologist and surgeon have been watching her very carefully and
decided a couple months back that her heart/lung pressure was too high. They
did a surgical procedure called a Cardiolopulmonary catheterization under
fluoroscopy on Mar 25, 09. They found that her ECHO's are reading correctly
and her pressure is too high, but that her hole is too small to be causing
it. Her arches have opened up(which is really good news) but her heart is
still enlarged so she continues on her meds. They are checking the pressure
every three months by ECHO to make sure it doesn't get any higher. They are
thinking that this high pressure may be due to her genetic problem. That she
may just always have this high reading. We can only hope that that's the
cause and it does her lungs no harm.
So those were our downs. Now for our ups~ She's Walking !!!! This is such a
huge accomplishment for her and us. We were originally told by the doctors
that she probably wouldn't be able to even crawl or feed herself. That the
part of her brain that was affected controls her internal temperature,
desire to eat, and allows the brain halves to communicate. She appears to be
doing well in all those areas. She eats, not a huge appetite, but she eats.
She's 31 inches and 18lbs 7ozs now. She babbles like crazy, is recognizing
certain words to objects and seems like she's trying to say words. We have
been working on sign language with her. She gave me the sign for milk the
other day & I was really excited that she's picking it up. She is also
proving to be an excellent little sister as she rummages through her big
sisters room and follows her all around the house.
She is such an amazing wonderful addition to our family & I feel internal
warmth any time I look at or hold her. Her laugh and smile are contagious
and I can't help myself but love all over her. She truely is a miracle baby
along with all the others on here.
John & Tonya Byrnes
jtbrnz@yahoo.com
- - -
 5-26-08
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
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