Adalee ~ Full Trisomy 13 ~ Born: July 20, 2011
Hey everyone! I’m going to try to be brief :) I was so thankful for the stories on
this website. They gave us so much hope during rough times with our daughter. I’m
going to break this up into two parts, the first one is for those of you that want
to know all of Adalee’s medical information and what we have been through. I’m going
to warn you, we had a very rough first 9 months. I hope it helps you have some idea
of what you might have to go through with a wonderful trisomy baby. The second part
is about what Adalee is like and how she has impacted our family.
THE MEDICAL PART
My husband and I decided that we weren’t going have any invasive testing early in
the pregnancy because we wouldn’t have aborted a baby with disabilities. We had no
idea that something was wrong with Adalee. When I was 33 weeks pregnant, my midwife
was concerned about Adalee’s growth. She sent me for an
ultrasound which showed Addie
was not receiving the blood she needed and her fluid was getting low. I was sent
to the labor and delivery floor (which I also work at as a labor nurse). I knew something
was very wrong when I saw Adalee’s heart rate tracing. She would have huge decelerations
with minimal contractions. I had an urgent c/section that day because Addie needed
to be delivered and wouldn’t tolerate labor.
She was born at a weight of 2lbs 7oz. At birth, she did great, she had 7/9 APGARs.
She had extra digits on her hands that we called her “diggie friends” and a cutis
aplsia (scalp lesion). She was shipped to the Cleveland Clinic within hours. My blood
pressures started to climb after delivery reaching 170/110 (PIH is common for trisomy
13). I was shipped to the Cleveland Clinic the next day, and Addie was starting to
struggle to breath. She was placed on CPAP but eventually needed to be intubated.
She received steroids and to everyone’s amazement did fabulously off the vent a week
later. She began to grow, eat, and heal. She had a PDA that closed on its own and
her scalp lesion (which we were told would need surgery) healed fully on its own
in a month. At 5 weeks old, we were able to take Addie home from the NICU! We were
told we didn’t have much time, and they let us take her home at a very low weigh
(1500 grams).
Things were going well and we were learning to take care of her at home. At 2 months
of age, we had our first major scare. Addie started to choke at home after refluxing
some breastmilk. She turned blue and stopped breathing. We did CPR and called 911.
After 4 minutes, she coughed and slowly started to breathe again. The EMTs were just
walking through the door. We were taken back to the Cleveland Clinic. A day later,
she choked again and coded on and off for the next 2 hours in the PICU. She slowly
recovered and went home 3 weeks later, this time with an NJ tube that bypassed her
stomach so she wouldn’t reflux. This worked wonderfully until she was about 5 months
old. She choked again at home, needed CPR and was life-flighted back to the Cleveland
Clinic. This time, she received a surgery that wrapped her esophagus to prevent her
from choking. When they did the surgery, they also found that she had a malrotated
bowel and repaired it. We had a g-tube placed to feed her. She had a very hard time
recovering from surgery and was unable to get off oxygen. We found out that she has
bronchomalacia and would need to be on oxygen until her lungs grow stiffer.
We were back in and out of the hospital over the next few months with little colds
and bugs.
At 9 months of age, we were going to the hospital for a large amount of blood in
Addie’s stool. She was SOOOO fussy and we weren’t getting any sleep. On the way,
Addie’s g-tube popped out in the car and we were unable to get it back in. While
under anesthesia to replace the tube, Addie’s vocal cord spasmed and closed shut.
She coded again in the OR for 4 minutes. What was going to be a little procedure
turned into a major event. She was again on the vent. This time, doctors had little
hope she would come off the vent, but, in Addie fashion, she took her time and was
about to be extubated after two weeks. A little side note, the blood and fussiness
was from an allergy to something in my breast milk, we never could find out what
it was, but she is so much better now.
Adalee’s medical issues: Small cleft palate, small ASD that is not effecting her,
on o2 from bronchomalacia, fully g-tube fed because we are too scared to give her
anything by mouth, seizure that started about a year of age (seen to be more controlled
on Valproic Acid), low tone
THE FUN PART!!!
Adalee just celebrated her 15 month birthday!!!! She is now a chubby 16lbs. Typing
out all of Addie’s health history seems like it was in another lifetime. She has
been doing so well for the past ½ year, and we have enjoyed all the time we have
had getting to know our daughter. Most days, we forget that she is a “medically fragile”
kiddo. We go everywhere with her; friend’s houses, dinner, trips, parks, church,
and walks.
I can’t begin to describe to you how much joy Addie has brought to our lives!! We
know God made her perfectly. She loves to smile, play with her toys, and laugh. She
is trying so hard to roll over and is so close!! She reaches for our faces and loves
to touch and explore them. Everyone says that the baby years go by so fast. With
Addie, it feels just right We get to celebrate every little thing she does and
take it all in!
Knowing God has a plan for Addie’s life is what helps us get by the most. Things
seem in prospective with Adalee around. She is not a burden, but a blessing. I know
people look at our lives and think we are crazy. How can we deal with a child will
all these issues? I have had so many people come to me and say “I don’t know how
you do it”. HERE IS HOW: It’s not that God only gives you what you can handle, it’s
that God equips you with the strength, patience, and prospective you need. Not every
second of every day, but most days. If I am having a bum day, it’s because I’m not
trusting in His plan and that it is the best. When God does call Addie home, I pray
for the strength I will need to choose Christ rather than bitterness. She is a gift
from the greatest gift Giver, and until that day He calls her (or me for that matter)
home, we will celebrate her life!
Please e-mail us if you have any questions or want to talk. I know this journey is
not what you would have hoped or planned, but just know that God did plan it.
Email- shireonfire@yahoo.com (please put trisomy in the subject). We are on facebook
as well.
Much love,
Ian and Renae Shire
Some good links that have helped me:
“Welcome to Holland” LOVE THIS
We joke that this Addie’s boyfriend
Notice who is first It’s not because her name starts with an “A”, it’s because
she rocks. Serious note- LOVE the lyrics
My “having a bad day” songs:
We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa
BACK TO LIVING MIRACLES PAGE
