Nic Spends the Remainder of Summer at CMH

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 5^th 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.