Rockstar. That’s what
Juliet’s cardiac surgeon, Dr. Bleiweis called her. Early on, there were discussions as to
whether surgery was even worth pursuing since it was a strong possibility that she
would never breathe or feed on her own.
After surgery, many were certain that she would require a tracheotomy to
breathe and a gastric tube for feeding.
One by one, Juliet has left all of her detractors behind. On Monday, March 14, 2016, six and a half
weeks after her birth, Juliet Rose Boykin left UF Health Shands Children’s
Hospital in the arms of her mother and I with only the small internal shunt and
few scars.
Rockstar.
Jordan’s best friend from high school, Alyssa Lawther, flew
in that Monday afternoon to meet Juliet.
It was great as always to see her and for her to get to be a part of
such a big moment in Juliet’s and our lives.
Jordan and I were so excited for Juliet to get to breathe fresh air for
the first time in her life. We knew all
too well how stuffy and stale the air in the hospital could be. There were times when we emerged from the
hospital after days by Juliet’s bedside to be blown aback by the crisp freshness
of the outside atmosphere and the feeling of the warm Florida sun on your
face. Though she couldn’t exactly tell
us in so many words, I know that it was a pleasant and satisfying experience
for her.
The doctors would want to follow-up with Juliet before we
left town for good to head home over five hours away, so we would stay in the
apartment for a few days. Juliet did
fantastically. Special thanks to Carol
and Buzz Coady who sent us the Rock n’ Play which would become Juju’s first bed
outside of a hospital. She slept great
in it - so serene, only waking to eat every three hours or so. This has been a new experience for me. Having had two breast-fed babies before this
sweet girl, there wasn’t a whole heck of a lot for me to do when a hungry baby
woke for a night feeding. I did my part
by staying soundly asleep to ensure I was well rested whatever duties may call
the next day. ;-) This go around, I’ve
been an intimate part of the feeding process.
It’s been both exhausting and deeply rewarding. There is definitely a closeness that is
formed through the bonding experience of feeding a newborn that just isn’t
built elsewise.
We continued to diligently attempt to cram every calorie
possible into our baby girl, as her weight gain was still a concern. Later that week, we went in for a follow-up
and although Juliet gained about 100 grams in those few days, she was still
just hanging on to the bottom one percent of the growth curve. The doctors gave us a bit of a hard time
about it, and it’s difficult not to become defensive after how hard we’ve
struggled with her and pushed her to even get to this point. I try to calmly point out once again just how
much she’s had to overcome. For
starters, she had severe hydrocephalus at birth which means a significant
volume of fluid was built up on her brain and counted in her birth weight. Following her shunt placement, she had lost
over a full pound as the fluid drained and she endured surgery and the fasting,
sedation, and liquid diet that came along with it. Then, just when she was taking tube feeds
well, they decided to open her rib cage up like a pair of French doors and play
around in there for a while and send her through the whole recovery again from
the beginning.
We just wanted to go home at almost any cost. We didn’t want to hear about a g-tube again,
we didn’t want to hear about more hospital visits or tests. We missed our kids. We missed a sense of normalcy. And we just wanted to be home and be a family
again. After some discussion, the
doctors agreed that we could handle her at home and in the care of our
pediatrician. Thank God, we were finally
going “home home”. Or were we…
 |
| My cousin Vanessa and her husband Jamie stopped by for a visit on the way to Universal Studios |
Around this time we, heard back from Duke University where
we had been working since before Juliet’s birth to get her into an experimental
stem cell treatment. There isn’t a lot of
literature available on the internet, since they have not published results as
of yet, but Dr. Joanne Kurtzberg at Duke has been a true pioneer in stem cell
technology and treatment for a number of maladies. She and her team have treated over 80 kids of
various ages with hydrocephalus, and have seen marked improvement versus
control groups. They are currently
gearing up for similar trials with cerebral palsy kids. Stem cells have fascinated me since graduate
school, and I wrote a number of papers on the potential promise and ethical dilemmas
associated, so I was particularly excited to be a part of this for my own
interests and as a firm believer in the promise that stem cell treatments hold,
I couldn’t have been more excited to be able to give Juliet this opportunity.
Duke would be able to treat Juliet either that weekend or
the following. It was extremely tempting
to go home and spend a week with Jack and Liliana, but ultimately we decided
that it would be best for them and all of us if we stretched this journey out
one more week and made the trek to Durham, North Carolina. Of course, after the wreck with Liliana and
everything we’ve been through with Juju, we were terrified to transport this
precious cargo for this kind of a distance.
Because of her head size and inability to support it upright, we had to
get Juliet a special car bed (basically a car seat, but laying down flat). Despite our nerves, she did amazingly well on
the trip and the trip was relatively uneventful.
Somewhere along the way, we stopped at a sort of tourist trap
place to feed and change the baby and stretch our legs. This was the type of place with lots of
crafty cutesy junk and all the different varieties of overpriced roasted and
candied nuts and the like. Jordan found
a “handwarming” coffee mug that she just couldn’t live without, and as we were
deciding which one she wanted (they’re hand glazed so each one had a slightly different
pattern and color scheme) and checked out, the nice older lady working there
chatted with us and we explained where we were headed without giving any of the
details. We said thanks and left, and as
we changed Juliet’s diaper one more time at the car before hitting the road,
the lady came out and said that she just couldn’t let us leave without giving
us something. I told her she was too
kind but she insisted and suggested that we go out to eat or something while we
are there as she handed me a $50 bill.
Little angels are everywhere, and going through something
like this has been amazing in a way to see just how much good is left in the
world and in people. People really do
care about people. Sometimes it’s hard
to tell as everybody is zipping by in their electric cars and on their
hoverboards with faces buried in phones, tablets, and smartwatches. But at the core, when you peel back the
layers and remove the distractions, we are all filled with the same humanity
and people can’t help but feel that connection and empathize with others. We continue to be interminably grateful to
all of you who have donated to the GoFundMe or have given us gifts directly or have
shared the blog to your Facebook or prayer group at church. We sincerely can’t thank you enough.
 |
| Happy St. Patty's from Juju! |
We arrived in NC safe and sound but road-weary. In another little God-given coincidence, our
friends Bob and Kathryn Buckland from back in Niceville just so happen to have
a second home less than two miles from Duke University Children’s
Hospital. We can’t adequately thank the
Bucklands for their hospitality in taking us in, and we thoroughly enjoyed
visiting with them and letting them get to meet and love on our Juju bean.
At the hospital, the process was relatively
straight-forward. We checked in and
Juliet was checked for vitals and to ensure there wasn’t anything else going on
that with hinder the procedure. Once
clear, they begin the process of thawing her stem cells which were harvested
from her umbilical cord at birth, picked up by a courier, and flown to Arizona within
hours of her birth. They were
subsequently cross-checked with Juliet’s blood sample taken in Florida and
shipped overnight to North Carolina, and once confirmed that the blood and
cells belonged to the correct recipient, they were once again sent on a plane from
Arizona to North Carolina. After all
that has gone into these cells, they don’t want to risk wasting them, so the
thawing doesn’t begin until the recipient is at the hospital and ready to
receive the infusion. The thawing
process takes a couple hours, so they sent us down to the coffee shop for lunch
and chilling. They gave us a
restaurant-style pager with the red LED lights which I thought was kind of
funny, but when it went off we couldn’t contain our excitement.
Back in the infusion room, the nurses were super sweet and
kind getting us set up and we met the music therapist who asked if we had any
special requests for during the procedure.
Yes, you read that right, there is a music therapist who serenades the
patients during their procedures. When
Dr. Kurtzberg arrived, she was everything I expected in all of the best
ways. Incredibly petite and sweet but confident
and in control. She arrived with an
entourage, which we were told she always does.
As she made final preparations we cautioned her about Juliet’s small,
flat veins and told her how everyone who has tried to stick her for IV or blood
has had an incredibly difficult time, required multiple attempts, etc. Dr. Kutzberg felt around Juliet’s hands and
feet a minute or two, and then slid the IV into Juju’s elbow on the first
attempt without any difficulty. We were
even more impressed. The infusion itself
only took a few minutes, and after a brief observation period, they sent us on
our way. The whole thing was sort of
unbelievable after months of preparation and all of the logistics of moving
cells and blood and people back and forth across the country, the actual
procedure went off without any pomp and circumstance.
The next day, we called in to tell the Duke team that she
had done well overnight and hadn’t had any side effects, and they told us we
were free to leave town and head on home.
So we did. We thanked the Bucklands
again and set off to our home for the first time in ten long weeks. We broke the trip up, stopping back in
Gainesville for the night, then we cleared the rest of our stuff out of the
apartment we’d been so graciously gifted, and headed home. Despite one minor
torrential Florida rainstorm, we made the trip with ease and Juliet slept most
of the way.
 |
| Last minutes in our apartment |
It’s indescribable the feeling of seeing our big kids again
after so long away and reuniting as a family of five after such a long time and
having endured so much. We are so
thankful to God for this blessing and to all of our doctors and nurses and
friends and family and supporters. We
are so delighted to be home.
 |
| Happy Easter from our three love bunnies! |
More from home next time, and so sorry it's taken so long to post this update. Life with three kids ain't no joke!
0 comments:
Post a Comment