Caroline Bernadette Guercio
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Caroline Bernadette Guercio was born March 30, 1999, 5 1/2 weeks early. We
had no idea anything was wrong. I had a very quiet pregnancy. No problems and kept my
weight gain in check. My water broke early one Sunday morning and we headed to the
hospital. They kept me and Caroline was born bright and early Tuesday morning after what I
consider a very easy labor. I pushed 9 times for about 30 to 45 minutes. The NICU nurses
were at the delivery and immediately discovered something was wrong. I didn't get to hold
her. They showed her to me very quickly before whisking her off to NICU. We still thought
it was just because she was a little early and really didn't worry too much. I was in
recovery when my husband came in and said she had something wrong with her but didn't know
the extent. The doctors came to my room in post partum a little bit later and told us she
had a cleft palate and that her esophagus wasn't attached and that it was growing into her
trachea. The surgeon was called and he came to talk to us. She had her esophagus repaired
when she was a day old. That day was very overwhelming and is still kind of a blur. We met
with the cleft palate surgeon, a geneticist, the general surgeon and the neonatologist. We
were assured that everything that was wrong with her was fixable. We felt a little better
but still wondered why was this happening to us. We still didn't know what was yet to
come. The doctors thought that we would be able to go home in 3 - 4 weeks. Caroline came
through her surgery just fine but took a while to start gaining weight. The surgeon said
that she had the narrowest esophagus he had ever seen. The NG tube took up the whole
esophagus. She came off of the ventilator really quick but couldn't stay off of it for
more than a week. They couldn't figure out why. She was almost always on room air, not
needing any oxygen except for a few blow bys. She was intubated 3 times during her 47 day
stay. The doctors finally figured out that she had Pierre Robin Sequence and her tongue
was blocking her airway. She had a G-tube put in at about 4 1/2 weeks old. She started to
gain weight really good around that time. She still couldn't stay extubated for very long.
She extubated herself once. That was fun! We really wanted her home so we decided to do
the tracheostomy. One of her neonatologists said that they could keep her in the NICU
until she grew some and she probably wouldn't need it but she would be on CPAP and we
didn't want that tube down her throat for several months and we really wanted her home.
She got her trach on May 4 and we came home on May 17. The first 2 - 3 weeks were scary
but now we are much more comfortable. We did have to go back to the hospital after 10 days
of being home. We thought she had a seizure but they ran every test imaginable and they
said it wasn't a seizure. We are getting into a good routine and aren't as nervous
anymore. She is 3 months old today and we are going out for the first time without her
Friday night. One of her nurses from the NICU is coming to sit with her. That is the only
way we would feel comfortable leaving her.
We expect to have her esophagus dilated in the next few months. It is growing but still
isn't were it should be. We hope to have the cleft palate surgery around the first of the
year. We will find out in November when that will be. We are hoping that the trach will
come out a few months after that. The surgeon felt that she should definitely have it out
by age 2, but could be as early as age 1. We are obviously hoping for age 1 or so. We will
keep you all updated and continue to pray for all of you.
Stephanie, Mark and Caroline Guercio
- e-mail – stick63@ix.netcom.com
