Following the surgery, Gavin got an infection in his
incision called cellulitis (a staph infection). He was
treated with an antibiotic for 3 days. When Gavin was just
over a month old, I was able to hold him for the second
time, now that he was doing better. Adam was able to hold
his son for the first time. At this time, they also
restarted his feeds. Gavin loved being held. His heart beat
was always steady, and his oxygen saturations were at a
good level.
When Gavin was a little over a month old, they moved him to
an isolette (incubator). This maintained his temperature,
and protected him from the sounds and light of the
nicu.When Gavin was a few days old, I made a tape of myself
talking to him quietly, and reading him stories and poetry,
and softly singing. They put this inside of his isolette,
and would play it to him at least once a day, since I could
not be there all of the time. (if he had been my only child
I would have been there ALL of the time, but Kane needed me
too, and I could only be there while Kane was at
preschool, or at night for an hour or two while Adam stayed
with Kane). Gavins favorite songs today are the ones that I
sang to him on that tape.
When Gavin was 2 months old, they took him off of the
ventilator (or should I say he took himself off!!They had
given him a course of steroids to help, and it wasnt time
yet, but one day he just grabbed hold of that tube, and
pulled it right out! This was at least the third time he
had done this.) They decided to leave it out. They
hooked him up to CPAP. This stands for continuous positive
airway pressure. This is a really strange looking
contraption. It kind of velcroes around the head, and has
huge nasal prongs which really distort the baby's nose. The
CPAP mechanically pushes an air/oxygen mixture into the
baby's lungs to keep the air sacs open after each breath,
reducing the effort the baby must make to breathe. Gavin
was on CPAP for 7 days. For a couple of days after he came
off of the CPAP, he was had a head box, or oxygen hood
placed over his head. This encloses the baby's head in
warm, humidified, oxygen enriched air for the baby to
breathe.After Gavin's head box came off, a nasal cannula
supplied his oxygen. It was so great to finally see what
may baby really looked like!!(without tubes and tape
attached to his face).
About a week after Gavin came off of the vent, Kane was
able to see his brother for the first time. He seemed
really excited, and we really made a big deal out of it. I
held him up to the isolette, and Kane looked in with much
interest. After just about 2 minutes, he said, "Im done
now." Afterwards, he seemed really happy. Now I think the
confusion was over for him. He really did have a brother,
and he was able idenify with that now. After this visit, he
showed a lot more interest in Gavin, and how he was
doing.He started talking about him all of the time, and
about when Gavin would come home. He also talked about him
a lot at preschool.
Every time after that when Kane was able to visit, you
could literally feel them bonding.
Kane holds Gavin(4 mos old)
A few days after Gavin came off of the ventilator, we
started to learn nursing together with the help of the
occupational therapists. Gavin did so great! He latched on
better his first time than Kane ever did. We practiced as
much as we could, and the nurses were not allowed to bottle
feed Gavin until we had nursing well established. He
continued to use a feeding tube so that when he got too
tired to suck, the nurses would finish his feeding with the
tube. The tube was now placed into one of his nostrils,
and
down in to his stomach. This kind of tube is called an NG
tube, which stands for nasal gavage. At this point it was
really nice, because I could take Gavin to a nursing room,
and we had privacy to nurse, and to get to know each other
better. I was already adept at all of his monitors, and
learned quickly how to hook him up to the portable O2 tank.
I also learned how to do his gavage feedings, so when he
was tired from nursing, I would gavage him. It was great
because now I was really able to help take care of him. I
changed his diapers, and took his temp when I was there,
and bathed him...I was finally having the chance to really
be his mom, and it was wonderful.
At three months old, we got some bad news. Gavin had
developed ROP. This stands for retinopothy of prematurity.
It is an eye disease that preemies get, which at its worst
can cause blindness. This is an area of prematurity that
there is still much unknown about.Babies who are on
supplemental oxygen before their eyes fully mature
(vascularize) are at the highest risk.This disease affects
the retina of a preterm baby's eye. It involves rapid
growth of blood vessels that can lead to bleeding, and
scarring of the retina. It can cause retinal detatchment,
and blindness if it is severe. Baby's who are on O2 are
closely monitored. It is important that their oxygen
saturations are not too low for their respitory problems,
but also not too high, for the risk of ROP. Some babies
require laser surgery to remove the scar tissue to keep
from damaging the retina.Im many, but not all cases this
surgery is successful. In some babies, the ROP will regress
on its own. Gavin had what they call stage 3 prethreshold
ROP in his right eye, adn stage 2 in his left. The stage
3, if it had progressed into the next zone would have
required surgery. Miraculously though, Gavin's ROP
regressed on its own. We were very lucky. All babies who
have had ROP however, must be followed yearly by an
opthamologist until they in their early twenties, for they
are at a high risk for later retinal
detatchment.
At four months old, Gavin graduated to an open crib,
because he was able to maintain his own temperature. He
was now what they call a "feeder/grower". At this time,
his big brother Mica came to see him for the first time(he
lives with his mom, about 5 hours away), and also his Uncle
Ralph, and cousins David and Joanna drove all the way from
Philadelphia (New Jersey actually) to come and see him.
That was a very busy week. Everyone had a great time
together, and especially spending time with the miracle
baby.
Mica and Gavin
Kane and Gavin
At about 4¼ months, Gavin had his ng tube removed. He was
totally on bottle and breast feeds. He was growing great,
and we were waiting for his eyes to fully vascularize, so
that he could come home.
At five months old,they moved a crib into the unit so that
Gavin would have more room and stimulation. We had so many
toys and clothes from home in his great big bed! Pretty
soon afterwards, Gavin got very sick again. He
contracted spinal meningitis. At first, they just thought
it was an ear infection. As they held him down to look in
his ears, he was fighting them really hard. I made a
comment
to the nurse practitioner (my favorite). She saw Gavin
through a lot of his battles. I commented that it was lucky
that he wasnt this strong when she had to do his spinal tap
(lumbar puncture) months ago, because that would have been
impossible. She really didnt respond to the comment, and I
immediately knew that there was something wrong. They
suspected an infection. We were lucky to have a great
resident on that day (it was a Sunday). She ordered a huge
round of tests including the lumbar puncture. Gavins
spinal fluid was tested, and it had an elevated white count
in the spinal fluid, indicating spinal meningitis. He was
taken off of feeds, and put on the big gun iv antibiotics.
We never did find out if it was bacterial or viral
meningitis. Since they caught it so quckly, and
got him immediately on the antibiotics, none of the
cultures grew out. After about 2 weeks, he was back to
normal--back on full feeds, and just waiting for his eyes
to mature so we could go home.
On August 28, I got the best voicemail message I have ever
had. It was our favorite nurse practitioner telling us
that Gavin had his eye exam, and his eyes had fully
vascularized, and he could come home!!! That evening, Adam
stayed at home with Kane, and Kane and Gavin's Grandpa
Steve, and his wife Marylyn, took me to get Gavin. As we
left the nicu, we embarked on a whole new world for Gavin.
He was about to experience life outside of the nicu, and
all of his firsts. His first ride in an elevator, his first
breath of fresh air, his first sky, his first night breeze,
his first sunset (and it was setting as we left the
hospital, and was one of the most beautiful sunsets I have
ever seen!), his first car ride.....and I didnt take any of
these firsts for granted, just as I will never take
anything my children experience for granted ever again.
When we got home, Kane and Adam were waiting. We were
nervous, but extremely happy to finally have him home with
us. In Gavins first 5 minutes home, our best cat Tivers
dropped the biggest grasshopper I have ever seen on Gavin's
belly as a welcome home present. This is where our journey
through the nicu ended.(and this has seriously been the
Readers Digest version!! ~~believe it or not!)