This is an attempt to give our family and friends a glimpse
of our baby Carter's llife. I hope this will help you better
understand O.E.I.S complex (Cloacal Exstrophy). Carter is a true blessing and God has a special plan for him.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14
My Arms are Full...
My arms are
full! The best way to describe yesterday
is that the day was full of God. We
could see and feel Him everywhere. Just
as I was about to wrap my arms around Carter, He had His arms wrapped around
us. Carter slept well the night before,
which means I was able to get a little sleep.
Brandon and I both got our showers early, and we got Carter ready for
the day earlier than normal. Carter was
scheduled to go to the Operating Room at 9am.
At 8:15, the Anesthesiologist came in and said that things were ahead of
schedule and he would be going to the O.R. early. Anyone that has been in the hospital knows
that this NEVER happens. The Anesthesiologist
noticed our accents. He had one too, and we began to talking to him. He left our PICU room for a few minutes and
returned with 2 hats, 2 gowns and 2 masks for Brandon and myself. He allowed us to go back to the operating
room with Carter, and we were able stay with him until he was completely
asleep. He then told us to go back to
our PICU waiting room, so we could be in the room when Carter woke up and we
could hold him. Normally parents, even
if they have a PICU room, are required to wait in the surgery waiting
room. Anyone that has read my blog knows
that I really wanted Carter to wake up in my arms. Housekeeping came in and cleaned our room. As
soon as she was done cleaning, they called and said that they were on the way back
to the room with Carter. Our nurse and
myself hurried to get Carter’s room ready.
We moved all of his equipment, so that he could see out the window from
his bed. Carter came back from the O.R.
and the anesthesiologist, nurses and PICU Doctors hurried so I could hold
asleep when he was put in my arms.Still
asleep, he immediately turned towards me, smiled and held onto my shirt as
tight as he could.It was an amazing
feeling.It was a similar feeling to
holding him for the first time after he was born. Although, I think it may have
been better.This time I could feel
Carter’s worries slip away.Carter was
having uncontrollable shaking when he was laying in the bed (from all of his
medications and anesthesia), but as soon as he got in my arms, he stopped.He stayed asleep for about 30 minutes, and
then he woke up happier than he has been since March 27th.
been absolutely miserable for the last 8 weeks.He constantly cried and held his arms up multiple times a day for
Brandon and I to hold him.If the
curtain was open in our room, he would repeatedly point and tell us he wanted
to go out.We had to keep all of the
lights off and the shades pulled down over the window, so that he would sleep
as much as possible.The look of relief
on his face when he woke up was unforgettable.He immediately started smiling, dancing and laughing.Everyone that came into the room left with
tears.They could not get over the fact
that none of his medications had been changed. The only difference is that now,
he can be in our arms. We held him until it was almost time for bed.
He does not
have much head control, and he is going to have to learn how to sit up again. Those
are things that will all come with time.His legs are casted from his thigh to his toes. They have a bar attached
to them that keeps him from being able to close or spread his legs.This morning they decided to go ahead and
pull Carter’s ureteral stents, and they did an ultrasound this afternoon to
make sure his kidneys are functioning well.He still has his supra-pubic catheter, and he will continue to have it
for a while.
many first yesterday. I was able to hold him for the first time in 2 months. He
was able to put a t-shirt on, and another HUGE first was that I changed his
diaper for the first time in his life without doing a dressing change to his
bladder.I am still feeling like I
forgot to do something!We know all of
these things would not be possible without God.He has given our Urologist, here at Johns Hopkins, the skilsl to save
children’s lives that were once deemed inoperable and sent home to die.We were reminded today just how rare Carter’s
birth condition is.We were informed
that Johns Hopkins Children’s Hospital is celebrating 100 years of treating
children this year.We were also
informed that Carter is the 100th Cloacal Exstrophy closure
performed at the hospital.Johns Hopkins
is the leading hospital for closing Cloacal Exstrophy with the second leading
hospital recently only closing their 54th Cloacal Exstrophy child.We were amazed that the hospital is
celebrating 100 years this year and Carter is the 100th Cloacal
Exstrophy closure.I think God is just
showing out.We spoke with the public relations
department today about sharing the news. I will keep everyone updated on what
they come up with.
Carter a break yesterday after he returned from the operating room.It was so nice to have our happy baby back.
They started aggressively weaning all of Carter’s medications today.We can tell he is not feeling well, and he is
having a lot of issues with vomiting.Right now, everything is manageable.It is going to be a long process, but we are ready.We are so thankful to each and every one of
you that read and pray for our sweet Carter.We honestly could not make it without all of your support.Thank you and as always… To Him be the
My arms are full!
Carter was able to get out of his room in the PICU for the first time today.He went on a wagon ride around the unit.His eyes are still sensitive to light so he wore a hat.He had a great time! " When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." ---Isaiah 43:2