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Cyndle Plaisted Rials hasn't added a story.
Mikko was born with gastroschisis, a birth defect that only occurs in
about 1 of every 5,000 births, and it was detected through a level-2
ultrasound that his small intestine was protruding through a hole in
his abdomen. We already had one child who needed surgeries within the
first year of birth (our other son, Sage, was born with a cleft lip
and palate), and this was an even more daunting worry. Mikko was born
nearly two months early on New Year's Eve--he never required
respiratory assistance, and his weight (5 pounds 1 ounce) was
impressive for both his gestational age and his condition. However,
when he was born, the surgeon was concerned about the condition of a
large portion of the intestine; much of it had not received proper
blood flow and had been damaged by exposure to the amniotic fluid,
rendering many parts basically "dead." He had a minor
surgery when he was a few hours old to increase the size of the hole
in his abdomen, since it had been constricting the intestine, and to
place a silo in which the tissue would be protected until it was time
to put it back in his belly and close the hole.
During this time we couldn't hold him--we could only place a
palm gently on his head through the side of the isolette, wondering
when we would hold him and feed him, things most parents expect and
think nothing of when their babies are born! The doctors waited a few
days to see how everything looked after the swelling went down, then
proceeded to operate, lifting out and measuring the intestine to
determine how much he had and how much was damaged to the point of
needing to be removed. The night before the surgery, I went up to see
him in the NICU and finally asked the unthinkable, but only able to
choke out the words "So, depending on how much of the intestine
is bad, he might not make it?" And saw the small confirmatory nod
of the kind doctor that was in the room. And I just cried on her for
an hour, so fearful of what news I would receive when the surgery was
finally over.
The next day, after waiting feverish hours,the surgeon told me
that the surgery was successful in many ways. However, a typical
full-term baby has about 180cm of intestine; Mikko had about 85cm
total, and 15cm were too damaged and had to be resected. Other
portions that were partially dead had been repaired. But all was not
over. In all, Mikko has had four abdominal surgeries, because
additional resections were needed.
At one point it was discovered that some portions of the
intestine were not even hollow and did not allow anything to be
processed through them. This was only discovered later as he was able
to start eating (which happened at about 2.5 months old (he had never
eaten anything before that--nutrition was provided through TPN
(basically raw nutrients) pumped into his blood through a central
line)). He had only been eating for about four days when it was
discovered that he had a yeast infection in his central line, which
was particularly worrisome, as a yeast infection in the bloodstream
can be fatal. Eventually he was able to begin eating again after
recovering from the yeast infection, but he didn't tolerate it well
and soon began feeding through a gastrointestinal tube directly into
his stomach. That was the status quo until a few weeks after he
finally came home on May 15th, four-and-a-half months after he was
born. Once he was home for two weeks, doctors encouraged us to begin
feedings by mouth, and he has been doing pretty well with that.
Mikko has had his central line removed, so he no longer gets IV
nutrition, which is a huge victory, but he has had some intestinal
bleeding lately, which may require more surgery. Even when he's
healthy, we travel to Boston monthly for labs and a clinic visit. So
far, his care has totaled well over three quarters of a million
dollars, and his current medical needs just add to this total; he
takes 7 medications every day. Although we have private insurance, it
doesn't come close to covering all these expenses, and his condition
requires me to be home with him to offer the care he needs. Your
contribution would bless and help us so much! We thank you from the
bottom of our hearts!
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