Who knew at the age of 23, I would
have a child with Down syndrome... not me! On December 29th, 2017, after being
in labor for only 4 days, I did.
I begged the nurse at the birth care
center to admit me after being in labor for four extremely long days. Thank
goodness she finally did. Once I got my epidural, I was ready for a nap.
However, 30 minutes later I was dilated to a 10 and ready to go. No nap
for me! Reese was born in about 6 minutes. She let out a big cry, then it was
silent from there. I could tell her color was a little off , but all I
could see were the stars in her eyes. The nurses laid her on my chest for
a couple minutes, and then took her for some testing in the little bed next to
me. I could hear them talking, and Taylor and I just kept trying to look over
and see her. They put Reese back on my chest with the tiniest oxygen mask I
have seen, and it was still too big. The OB that delivered Reese (not my
original OB) came over to make a statement that would change our lives
forever. She asked if we had done any previous genetic testing, we said no as
we never felt the need. She responded, "Well, Reese is showing some
physical traits of Down syndrome, but I do believe everything will be
alright." ......... Taylor said, "uhh, what?" From that point on
things were a blur. One of the NICU nurses came over to Taylor and I, and
started to point out the characteristics. All while I am still trying to hold
this tiny mask on my freshly newborn baby! She pointed out her low muscle tone
(hypotomia), sandal toe, almond eyes, fatty roll on her neck, brushfield spots
(stars in her eyes), and simian creases on her hands. Shortly after that they
took her to the NICU for further testing, and to get her O2 levels up. Taylor
went with her, and I watched my newborn baby, that I just carried for the past
10 months being wheeled away in an incubator attached to monitors and oxygen
wearing the tiny hat with her name on it. I lay in that hospital bed for
another 2.5 hours waiting to see my daughter. I was numb. I was nervous,
scared, sad, mad, and secretly hoping the nurse was wrong. This isn't what I
asked for. I prayed for a happy, healthy, and sleepy baby. -- That's exactly
what I got!
Taylor held my hand and led me to
our baby girl. She was laying there in her little bed, connected to monitors.
Such a bitter sweet feeling. She looked so peaceful, but all I wanted to do was
pick her up and hold her. So, I did! What an amazing feeling. After Taylor and
I passing her back and forth for the next 11 hours, it was finally time for us
to go to bed. The feelings all came back again. I was numb. I was
nervous, scared, sad, mad, and secretly hoping the nurse was wrong. I wasn't
supposed to be leaving her there.
The next few days Reese passed her
hearing test, was clear of cataracts, took her first bottle, had an
echocardiogram, confirmed she has a PFO (patent foramen ovale), hypertension,
and a diagnosis of Trisomy 21.
After 4 days in the NICU of tests,
tests, medicine, diaper changes, IV's gone wrong, and a few more tests we
finally made it home. Reese had a big sister waiting at home for her the whole
time. No children under the age of 12 were able to come up to the hospital
since it was right in the thick of flu season. Big sister, Leighton, was so
excited to meet Reese. Her reaction was priceless. Since then, Leighton has
been Reese's second mother!
Taylor and I have had so much
support since day one. The geneticist from the hospital was very informational,
and explained everything to us in detail. When we got home, friends and family
delivered food for weeks. The Down Syndrome Society of Wichita brought the
sweetest basket with great books, information, an adorable outfit, and of
course a blanket. Reese has also started early intervention through Rainbows
United, and sees a therapist weekly. Since we are coming up on 6 months soon we
do have a few follow up appointments to get her eyes, ears, and most
importantly her heart checked again. We are praying every day that her PFO is
closed, and the hole is gone!
I never thought that I would be
living this life, but here I am Advocat(ing) like a Mother!
I planned to have this blog to keep
others updated with Reese and this beautiful life that God has given us, but
also for my own sanity. Writing (or typing) is something I enjoy, especially
about someone I love. I'm sure I will get sidetracked and post about other
things in my family, but we're all in this together.
I'm going to add some facts about Down
syndrome that others may not know:
- There are 3 different kinds of Down syndrome --
translocation (4%), mosaicism (1%), and trisomy 21 (95%). Reese has
trisomy 21.
- The average person has 46 chromosomes (23 pairs) - with
Trisomy 21, this means there are 3 copies of the 21st chromosome.
- Roughly 60% of people born with Down syndrome have
heart defects.
- It is the most common chromosomal condition.
- In 1983 the life expectancy for a child with Down
syndrome was 25, it is now 60.
DownRightReesey
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