My Preemie
Twins Are Truly Miracle Babies!
Share our Story...
Anyone
that has a premature baby must buy this book! I highly
recommend it. Between my two preemie twins, they had
about every preemie complication that this book covers. Buy
the Book at Amazon. Then, Read on....
Our twin girls were born
January 27, 1994 at 27 weeks gestational age, over thirteen
weeks before their due date. Mallory Joan arrived first
weighing 2 lb. 6 oz. Macy Annette came second 2 lb. 9 oz. As
soon as the airport runways were cleared of snow, both babies
were put in one incubator and flown off to Omaha, Nebraska.
Both girls experienced what I
found to be normal preemie complications: Respiratory Distress
Syndrome (RDS), PDA (heart murmurs), central line infections,
retinopathy of prematurity, jaundice, anemia (needing blood
transfusions) and hernias. Each girl had their own primary
nurse that took excellent care of them. Both girls came off
the ventilator at 3 1/2 weeks of age, and I was able to hold
them for the first time. They even began feedings. I kept
thinking they would surely come home before their due date of
April 28th. Their isolettes were even moved closer to the door
where the healthier babies were. We knew from the start that
Macy was the feisty one as she had to be given Ativan to calm
her down and keep her from pulling wires and tubings. Mallory
was the more passive of the two babies.
On March 1, both girls hit a
milestone of reaching the big three pound mark. I thought that
was quite an accomplishment, until the neonatologist called us
in the middle of that night to come down as Mallory had
stopped breathing, and they were having a hard time re-intubating
her. He didn't think she would make it through the night. That
was the longest 2 1/2 hour drive ever, and little did we know
how many more trips of the same were yet to come. Mallory was
resuscitated by the time we got there, but was now moved to
the back wall, a long way from the door home. Mallory
experienced seizures and underwent a series of EEGs and MRIs
to eventually diagnosis her with periventricular leukomalacia.
She also received her first haircut as her central line had
gone bad, and she needed an I.V. site. Eventually she would
have all her hair shaved off.
I decided to spend the night in
the parents' room, but couldn't sleep. When I went in to check
on Mallory, Macy was now sick too, even sicker than Mallory.
Macy was diagnosed with Necrotizing EnteroColitis where the
colon become infected and dies (NEC
Survey). She was soon prepped for surgery. She
was too unstable to move to the Operating Room, so the OR came
to her. Macy ended up having 10 inches of her small intestine
removed. The surgeon gave her a colostomy to let the rest of
her bowel recuperate. Mallory inevitably had surgery for NEC
also on Good Friday and another one on Easter Sunday. She had
a few centimeters of intestine removed from the NEC, along
with some ovarian cysts, one the size of a golf ball.
Macy recovered quickly after
surgery: off the vent, resuming feedings and moving to an open
crib out of the isolette. Then one day no stools were in her
ostomy bag; instead she was vomiting them up due to a blockage
in her intestine. This led to Surgery #2 for her to remove the
blockage and reconnect her bowel. Her reconnection had failed
to heal properly and had to be revised in Surgery #3. Macy was
now missing a total of 17 inches of large and small
intestines. But as usual, Macy bounced back, and they wanted
to send her home. Mallory was diagnosed with esophageal
reflux, was having a hard time learning the
suck-swallow-breathe technique and kept having apnea/bradycardia
spells, but they were determined to send her home, too.
The girls came home for three
days in May, and I was petrified. I took them into the
pediatrician every day. Macy bawled non-stop 24 hours a day.
Mallory kept having apnea/bradycardia, and her monitor would
go off. I would run, shake and yell at her to remind her to
breathe. To top it off, my three year old son came down with
the chicken pox. Then, when I noticed blood in Macy's stool, I
packed them both up and drove them to the NICU in Omaha where
I knew they could get better care.
The girls couldn't go back into
the NICU considering the pediatrician had given them baby
shots, including the live polio vaccine. The girls were moved
to the PICU and given the VZig antibody to ward off the
Chicken Pox. They were quarantined and received terrible care.
I missed their primary nurses who had become attached to
"their" babies. Mallory's problem had been somewhat
resolved by putting her on Oxygen. She came home for good on
Memorial Day with an oxygen tank and nebulizer machine to add
to her equipment.
Macy remained there with no one
knowing what was wrong. She was extremely jaundice, her tummy
was distended, and her stools were bloody. Everyone thought it
was a formula problem, and she tried every special formula
made. The residents actually told me they could find nothing
wrong with her, so there was no need to consult a surgeon or
any specialist. So I took Macy home with all these problems
still crying 24 hours a day. I again took her to the
pediatrician every day trying new meds and asking to see
different specialists.
Finally we saw a pediatric G.I.
doctor. He found a problem. She not only had gallstones, she
was storing them instead of passing them. She also had C.
Difficile. Surgery #4 was now at a different hospital that I
thought would have better care. But I thought wrong. One
employee left her alone burning a hole in her arm performing a
sweat test checking for cystic fibrosis. I wished I could've
stayed there with her all the time, but living so far away and
not having enough trained people to watch Mallory at home, it
was next to impossible. And one major problem persisted, a
gallstone was missed in surgery and was blocking her bile
duct. She had a tube inserted during surgery which was
draining her bile, and they were refeeding it to her through
her nose. They wanted to send her home like this. I suggested
to do another surgery to remove the stone, but the doctor
advised me she was too unstable for another surgery. Without
my consent, she was given Moctanin, a drug for adults with
gallstones that had never been tested on children, and she
coded.
We got called down again saying
Macy was very sick, and we must come down right away as she
may not live through the night. We had heard that phrase so
many times that it was like we didn't believe them. But this
time the doctor was even more serious than any other time. I
bawled and screamed and prayed. She was so gray and lifeless.
Nobody knew the effects this drug would leave. But I now know
that prayer does indeed work and that Macy is one heck of a
fighter to endure all those ordeals because she lived and was
able to come home on August 5, 1994.
The roads ahead were not easy
as we still spent countless hours in doctors' offices and
hospitals for check-ups, tests and procedures. Both girls are
still developmentally delayed, but with the help of special
education are almost up to par. They are truly miracles.
New!
Due to high demand, I have added
a new section: Update on the
"Preemie Twins". I plan to add more pictures
and "Life after the NICU" when I find some free time
(What's that?) :-)
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