I'm really behind on this.
Late May we noticed that Nicolette did not want us to hold her
anymore. What first seemed like
potential soreness from some really rigorous PT ball work, turn into serious
concern. Everything we picked her up,
our sweet, happy baby started to scream and cry. I took her into the doctor's office multiple
times and even demanded to see an Audiologist convinced it was an ear issue
(infection or fluid) leaving each the with zero answers. Mid July rolled around and we began to see a
complete decline in eating progress. It
was like Nic had forgot how to eat all solid foods, and sure enough one week
later, she stopped bottle-feeding. What
little she did eat, she failed to keep in her stomach. Perplexed, we packed her in the car and
headed to CMH.
The next 3.5 weeks were a blur. I can remember how rudely I was treated the
first day when I demanded an ENT doctor come look at my child’s right ear or
when I demanded the resident give her a strep test. I remember insisting of daily visits from the music therapy team because that seemed to guarantee at least one laugh a
day from Nic. I can tell you that I
slept in the hospital every night with Nic watching her get worse and worse,
struggle to breath, and how horrid it felt when no one was able to tell me why. I remember difficult decisions and being asked for permission to treat theoretical medical conditions. I remember what the hallways
looked like when I personally walked next to her as we were moved to the
PICU. I can tell you my milk supply cut
in half while in the PICU. I can
remember the need to heavily spellcheck a despite email to two hydro mothers
asking for help when her shunt was ruled out for the 5th time yet Nic could no longer breathe on her own. I can tell you I talked to 34 different
specialists and 62 hospital staff members.
And I can still remember how time froze when Nic coded, the small PICU
room filled up with specialists and doctors, and how hard it was to listen to
the head of the PICU when she told me to call my family because Nicolette would
not make it. I remember the look on her face, she felt as helpless as I did.... and in a moment, I honestly hated her for it. I can remember how calm I was
asking her neurosurgeon if he agreed that she would indeed die; how carefully
I listen to him tell me that that he was optimistic but how critical the next
step was because the margin for error was gone (…and oddly how simultaneously I
thought I was going to have to write the neurology team an apology for ripping
them when they told me she wouldn’t live to be over a year old). I remember how completely alone I felt
hearing all of this information, and how determined I was to make sure Nic
never felt the way I did. I remember that even after I was told all of this, I still demanded music therapy came daily because, maybe, she could still smile on the inside when they played. And finally, I
remember how happy and infuriated I was when our NSG (thank god he stayed on
her case after he cleared her shunt!), discovered via MRI a huge abscess deep down
her throat on-you guessed it-the right side.
And still, months later, I still feel so humbled that I have a daughter
that can brave 4 neurosurgeries and a month of medical incompetence. Here is a random part of the story, but a
cherry on the crap cake, what was the abscess full of?.... Strep….. go figure.
I’m not writing this post for pity. I’m writing for the opposite reason. If I have learned one thing (and I can assure
you, I’ve learned many things) from my child, it’s to trust in myself as a parent. I had the wrong part of the ENT specialty,
but I KNEW she needed an ENT to fix her issue.
I KNEW in late June that something was wrong with my child, that is
wasn’t just a sore muscle from a heavy PT session. Before Nic went down for her life-saving MRI, I had completed transfer paperwork to move her to Boston, because I KNEW she
wasn’t getting the care she needed at children’s mercy. I knew that regardless of how that hospital
story ended (with her and me leaving or me leaving alone) that I was so blessed
to have her. AND I KNEW I was meant to
be her mom.
I want to say thank you.
Thank you, the reader, for sharing in our journey. Thank you for allowing me to discuss our
story openly, even when the story is scary.
Thank you to her Neurosurgeon who has saved her life multiple times
now. Thank you to the group of hydro
parents that checked up on Nic everyday offering experience, sympathy and
advice. Thank you to our family that
dropped everything to be with Nic when we needed them most. They made it possible for Nic to never have to be alone and for me to still be able to eat and shower. Thank you to everyone that
came when we thought she was going to pass.
And most importantly, thank you to Nic for never giving up, because you made me refuse to
give up.
