It feels like it’s been
forever since we’ve written a blog update.
We have been so busy falling into our new normal, that we usually just
update on Facebook, but I wish we had been more diligent about documenting our
daily lives.
Where do we start? Juliet turns ONE on Friday! This has been the
longest, shortest year of my life. We recently took a trip to Gainesville for
appointments and an MRI. We checked into
The Ronald McDonald House almost a year to the day from when we moved down
awaiting Juliet’s arrival. Time flies
when your schedule is nuts!
She has recently been
diagnosed with Cortical Vision Impairment.
Her eyes are perfect structurally, but her brain and eyes don’t
communicate correctly. We are contacting
The Florida School for the Deaf and Blind in St. Augustine in hopes we can get
a therapist to help out. In the meantime I am working with her at home, and we
are patching her eyes to help with her strabismus (her eyes cross
intermittently). We recently found out that
besides having a vision impairment, Juliet is having trouble hearing. Her eustachian tubes don’t drain properly, so
fluid has built up behind her ear drums.
She has surgery planned to put tubes in to allow the fluid to
drain. Hopefully this will help her eardrums
vibrate, receive sound and help her to start communicating with us. She babbles, but hasn’t started really
speaking yet. It’s coming! You can see this little girl has a lot to
say. You should see her fuss at us when
we try to make her do something she doesn’t want to do. She is incredibly independent. A phrase we utter constantly, is “a Juju does
what a Juju wants”. We are still working
on her holding her own head up, working on sitting up, and working on getting
her head up so she can crawl. She’s
incredibly strong from the neck down.
You should see her flip onto her stomach and push up like she wants to
stand. Once she’s strong enough to lift
her head, she will be off like a bolt. Her head is still roughly the same
circumference as it was when she was born. She is in a beautiful pink helmet
painted with roses to help shape her noodle. Her head is obviously large, but
from laying in the NICU and PCICU bed for so long, it was flattened and
elongated. Our time in the helmet is coming to an end soon, so hopefully it has
helped “round out her head” as much as we hope it will. 
We have ordered an adaptive
wheelchair/stroller to help Juliet interact with the world around her. She spends so much time on her back or in her
carseat, we hope the chair will allow her to feel like a big girl. It will have
a harness to help hold up her trunk. She
has a lot more head control when her energy isn’t going into holding her trunk
upright and her head. This should all
help with her feeding too! Yes, this little one is complicated! She also has some congenital scoliosis, and
hopefully helping Juliet find alignment when she’s seated, will help her spine
in the long-run too. Her orthopedic
surgeon will follow this, and we will monitor her upper spine for possible
future scoliosis. Apparently babies who have
had open heart surgery are at risk for curving of their upper spine down the
line. Right now, she just has scoliosis in her middle spine with some fusing of
her vertebrae.
Okay, enough with the
housekeeping, I feel like I spend so much time discussing with people,
therapists, specialists, surgeons, etc. what difficulties Juliet has going
on. I still refuse to say “birth
defects” and prefer “birth hiccups”.
Juliet is not defective in any sense.
I wish the cutie-patootie would sleep through the night already (she’s
still up at 11, 3 and 5), but other than that, she’s darn near perfect. She has
fallen into this family seamlessly. Jack
adores her, Liliana dotes on her. Liliana is the first to scrunch her brow and
fuss at me if Juliet is getting cranky for a bottle. She will tell me “Mama,
Juju needs ba-ba, NOW”! I don’t think I have to worry about Juliet wanting for
anything. Her siblings are very attentive. Sometimes Liliana the tornado loves
on her super hard. We are thankful she’s
in a helmet during these “affection-induced-super-hugs-that-end-up-in-Liliana-tripping-and-falling-all-over-little-Juliet”. Hey, she loves BIG. She gets a burst of love sometimes, and excitedly tells me “JUJU CUTE!!”
Juliet seems to draw people to
us. People stop us to tell us how cute
she is, they inquire about her helmet, and people end up sharing their stories
with us. I had not heard of the term
hydrocephalus before Juliet, and this year, I’ve connected with several
strangers that have a connection to hydro. People have stopped us to ask if
they can pray over Juliet. Yep, she’s a
special baby, and she has drawn special people into our circle.
Okay, now onto the next big
hurdle for Juliet. Before Christmas we were in Gainesville to meet with our
doctors. We met with a plastic surgeon
to talk about Juliet’s nostril. It didn’t form correctly cosmetically or
functionally. We wanted to know if she
needed surgical intervention now to help her breathe better, and to appear more
symmetric with the other side. First off, yes they will fix the appearance of
her nose “when kids start to make fun of her” or when she starts to be self-conscious
about it. I would think to do it before
that point to shelter her from mean comments, but I guess she needs to grow
into her nose as much as possible first. Okay, so right off the bat the PS
says, we will discuss her nair, but she has some other things going on we need
to discuss. Hold the phone. SKIIIIIIIRT. It’s never the appointments we are
freaked out for that get us. It’s the
ones we walk into unsuspecting that punch us in the stomach. Juliet has a dimple in the middle of her nose,
and has had it since day one. Apparently
that is a tell-tale sign of a dermoid cyst. Some of you might remember that
Liliana just had surgery to remove a super common dermoid cyst from behind her
ear. No big deal! Outpatient surgery. NOPE.
In true Juliet fashion, a nasal dermoid cyst is incredibly rare. I think it’s 1 in 30,000. At the very least, the cyst is causing her
nose to grow out wide, and would need to be removed. Worst case scenario, it’s
grown into her brain and will require neurosurgery. 
Which card do you think Juliet has been delt?
You guessed it. Juliet is rare, as rare
as her combined conditions. It looked
like the cyst is going either to her brain, or has passed the threshold into
her brain. We went to Gainesville to get
a sedated MRI to get a better view.
After the discussion with the surgeon tonight, it was too hard to see
still. They will need to go in through
her nose (cut vertically down the center of her nose and at the base) and try
to remove the cyst. If the surgeon gets
to where the cyst meets the cartilage that seperates her brain from her nasal
cavity and sees that it has crossed into the brain, they will stop, get our
neurosurgeon that will be standing by and he will perform neurosurgery. He
might have to take off her frontal bone to get to her brain. They will have to take great care not to
rupture the cyst, causing infection, and they will have to be very careful of
her shunt. 
When you have a baby with
hydrocephalus and a shunt, you know she will likely have neurosurgery more than
once in their lifetimes. Shunts fail.
They keep our children alive, but they also fail. Some children and or adults have shunt
revisions over and over and over. We are
very lucky (knock on wood) to be approaching her shuntiversary (23 hours after
Juliet was born) without a shunt complication.
I never expected her to have to have neurosurgery for anything besides
hydrocephalus. The cyst needs to be
removed and quickly because of the risk of infection. The cute little dimple is actually an opening
to the cyst, and if it gets infected, it can turn into an infection in her
brain, or meningitis. Sooooooooo, the plastic surgeon is headed to the OR
tomorrow just to track down our neurosurgeon, so she can discuss more of our
plan before she leaves the country on Wednesday for a conference. We have a surgery date set for February
14. Oh, if the surgery goes as planned,
they will have an ENT on call to put tubes in her ears while she is still
under.
Do you ever feel like your
world is spinning around you too fast for you to stay on? I do. I often feel like someone is sitting on my
chest and shaking my head around in circles.
I can’t catch my breath. Life as a mother to a special needs child is
hard. It’s scary. It’s lonely, even surrounded by an amazing
support system of family and friends. I question myself a million times a
day. Have I fought hard enough for her
today? Have I done enough research? Have
I contacted every specialist? Am I in the right online support groups? Have I asked the right questions? Did I push her hard enough today in therapy?
Then the really scary thoughts hit usually between her 3 am and her 5 am
bottles. I have known more people this year to lose a child. It’s obviously our
biggest fear, and as strong as we make her out to be, she’s painfully fragile.
Really, we all are, but her hiccups make her even more so.
When the day is too
overwhelming, I try to take a moment and drink my kids in…their smells, their
giggles, their imaginations. Jack smells like pencils, recess and syrup.
Liliana smells like candy, baby shampoo and like our dogs She bullies them
daily into loving her. She bullies with hugs.
They really didn’t like her, and now they submit to her and lick her
head. That’s my Liliana. Remember, she loves hard. Juliet smells like lavender
bath soap, a stinky helmet because she wears it for 23 hours a day, and she
smells like formula and that smell of a new diaper. I forgot how wonderful a fresh diaper smells.
That sounds weird, but they pump in some intoxicating baby fresh smell into
them. If you don’t believe me, go smell
a swaddler after you haven’t had a baby in the house in a while. Instant baby
fever. I didn’t get the chance to forget
that smell in between having Liliana and Juliet. I still have 2 kids in diapers. YEESH.
I apologize if there are typos
in this long-winded, rambling word soup.
I won’t go back and reread this entry. Can’t. It was hard to put it into
words the first time, and putting everything into words makes it real. Please continue to keep us in your thoughts
and prayers, and thanks so much so many of you who already have and do.
Jordan
Jordan, your babies are so lucky to have you as their mama. I'm constantly inspired by your strength. You guys are always in my prayers.
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