Family Story Assets (Word Document, Photos)
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Vitals:
Maxie was born weighing 2 pounds and 4 ounces, and she
was in the NICU for almost 11 weeks.
Interventions:
She had apnea and jaundice and needed to gain weight. She was diagnosed with bilateral
cleft palate. At 6 months old, she had facial reconstructive surgery. At home Maxie
got early intervention services, including OT/PT and orthotics for her shoes.
She had RSV when she was less than a year old, and now she has virus-induced
asthma; she also has reflux.
Mandel Family Story
I had a “perfect pregnancy” with no known complications until
5 days before Maxie was born. That’s when I started experiencing a lot of
pressure and contractions—I thought it was Braxton Hicks. It was my first child,
and I have a high pain tolerance, so I wasn’t thinking about how serious it
could be. I didn’t get any education in advance about the signs and symptoms of
premature birth or what to do.
I called my doctor, who said to drink a lot, watch for blood
and rest. I noticed some spotting, so I called my
doctor again and went into the office, at which point they sent me to the
hospital. I was 4 cm dilated, and Maxie was in the breech position—there was a
95 percent chance she would be born that week. I was on bed rest in the
hospital for 5 days trying to stop the contractions. While on bed rest, I got
a shot to help make surfactant—the timing of the shot was important.
The head neonatologist gave my husband and I literature with
general stats about the stage that we were in, and the NICU staff gave us March
of Dimes materials. We were trying to stay positive, and the neonatologist told
us that every day Maxie stayed in mattered. We also received sobering
information about what to expect, and at one point, I didn’t want to have the
baby because I was so scared.
I was still feeling extreme pressure while having
contractions and she was still breech. On my fifth day of bedrest, they
recommended having an emergency c-section. Maxie
was born prematurely at 27 weeks, weighing 2 pounds and 4 ounces, and she was
in the NICU for almost 11 weeks. She had apnea and jaundice
and needed to gain weight. She didn’t have any surgeries while she was in the
NICU, but I thought her mouth looked too big and noticed that she had trouble
making a seal.
I felt a loss of control as a parent in the
NICU wanting to feed my daughter but not really having that power. One
neonatologist let me stay overnight and nurse her; it was successful, but I
still felt there was something about the way the breast/mouth fit that wasn’t
right. The doctors felt it was unrelated, and she had genetic testing that
didn’t turn up anything. I was told there was nothing to be worried about. I
took her to a specialist and she was diagnosed with bilateral cleft palate—her
mouth was too open on the sides. When Maxie was about 4 months old I took her
to a plastic surgeon and at 6 months old, she had facial reconstructive
surgery.
Maxie qualified for OT/PT through the local
IU as soon as she came home from the NICU. She received those services and was
followed by a development specialist through the third grade. She needed
orthotics to support muscle development and proper movement patterns—she still
wears orthotics today, though different ones than those little booties! Maxie
had RSV when she was less than a year old, and now she has virus-induced
asthma; she also has reflux.
Maxie has a younger brother, Leo, who is 11
years old. Because of my experience with Maxie, I went to a high-risk doctor
from the start when I was pregnant with Leo. He was born prematurely at 34
weeks. Years later, I had blood work that revealed I can’t break down b-vitamin
and folate.
