The Madness Between

I have been purposefully avoiding this blog for the past week.  My therapist once told me that there is no pattern or path to grief.  She has instructed me to sink in deep when the waves crash hard, and to hold on tight to moments of joy.  The Thanksgiving holiday brought a surprising amount of calm, blissful gratitude and I’ve been allowing my mind to savor in it.

Unfortunately, this morning I had to return to the place where my last post left off.  Since Tommy was born 9 weeks premature and spent 9 weeks in the NICU – he is followed by the Advocate Lutheran General NICU team until he is 3 years old.   We had his first NICU follow-up appointment in July and this morning was his second follow-up.  I could hardly sleep last night knowing that I would be getting in the car bright and early – and heading to my version of hell on earth.  The familiar drive that is still stuck on autopilot in my head, the parking lot, the smell and sounds of the hospital lobby, the elevator, the machines, nurses, doctors, even the Au Bon Pain restaurant I passed – send my heart racing, my breathing frantic, and my head dizzy.    While I owe Tommy’s survival to the many, many brilliant staff members at Lutheran General – I don’t think I will ever be able to even glance at the building without feeling a tremendous amount of pain.

The day after we were admitted (last November), we were moved into a weird ‘unknown’ wing of the hospital.  I was showing no signs of immediate labor and the nurses decided it wasn’t fair for me to spend my days and nights listening to healthy babies being born in the rooms right next door.  But because my doctors did not think it would be long before my body went into labor, they told me to plan on living in the hospital until the boys were delivered.  So Mac and I moved into a ‘long stay, high-risk mother’s unit’ room – two hospital beds, a small shower-less bathroom, and plenty of 1970’s decor.  Mac’s first question to the nurse was “can I bring in our own TV to hook up so we can watch movies?” and mine was “can my daughter sleep here with us?”.  Mac received a ‘yes’, I received a ‘no’.. and my second biggest meltdown followed.

It’s so interesting (and scary) to look at life in hindsight.  When we first found out we were pregnant with triplets, we met with three separate MFM (maternal fetal medicine) specialists in order to make sure our pregnancy received the best care possible.  The first doctor was close to home but was inexperienced with triplets.  The second doctor was an absolutely monster and recommended I abort 1 – 3 of the babies in order to give myself the highest chance of delivery a SINGLE healthy baby (I filed a complaint within 5 seconds of leaving his office), and the third doctor was a complete dream come true.  He outlined the risks, explained the solutions, and most memorably – congratulated me on the miracle of multiples.  All three doctors could not have been more different in terms of professionalism, personality, demeanor, and medical approach.  But all three doctors provided me the same risks associated with triplets and the two that I heard the loudest at all three appointments were:  twin-to-twin transfusion and bed rest (aka: life away from Riley).   In those early days of pregnancy, I can honestly say those two risks scared me to equal degree.  Through all of our losses and infertility battles – Riley was my ray of light.  She kept me distracted, kept me laughing, and kept me focused on why I was in this battle to begin with: to be a mom.  The thought of being on bed rest, in a hospital 45 minutes away from her, missing out on even a second of our life together was almost unbearable to imagine (my therapist blames this on my own mother abandoning me but we’ll save that for another lengthy post.. ; )).  Months later, here I am on bed rest for an indefinite period of time, preparing for the death of 1 – 3 of my babies due to TTTS, and away from the one child I CAN mother.

Our team of doctors were planning on spending the day running ultrasounds, labs, and determining next steps.  We were making endless phone calls to set up childcare for the coming days, weeks.  We had a meeting with the hospital chaplain to do a blessing over my belly.  And all I wanted was Riley.  We arranged for my sister-in-law to bring her to the hospital and let her spend some time with me.  I panicked in the minutes before she arrived at what she would think, say, feel.  Would she wonder why I was hooked up to a bunch of machines?  Would she ask to feel her three brothers kick like she always did?  Would she be confused when she would have to leave to go home, and I wasn’t coming with?  It was all soul-crushing.  But the second she walked in the hospital room – I realized she was still that innocent, goofy little 3 year old.  Her world had not crashed.  Mine had.  And I was going to do my best to put a big smile on my face amidst the pain and enjoy our new imperfect world together.