"You made me broken!" The visceral words directed at my parents spewed from my mouth as a 15-year old girl slamming the door. After finding my kidneys filled with 6 stones the size of peanuts in their shells, lots of scans and blood work at Stanford's LPCH, I was preparing to have the tumors (four, the size of golf balls) in my parathyroid glands removed - which also meant I'd be marked for the rest of my life with a 6-inch frankenstein scar across my neck. Hard to swallow, literally and figuratively, for any kid - especially a teenage girl.
That comment, "You made me broken!" so untrue, but so loud and clear echoes in my mind as I sit here beside our Christmas tree while my own family sleeps, trying to gather my thoughts and courage for Grace's surgery at Stanford's LPCH tomorrow.
At 6 weeks old, actually out here in California with my parents while Grant was in Switzerland, Grace had her first UTI - I remember rushing her to El Camino Hospital, laying across her in new-mom panic and not letting doctors anywhere near her when they mentioned "Spinal Tap". Two weeks later, she was back at Children's National Medial Center in DC for an 11-day stay with new UTI's - where we determined she was born with an abnormality - a duplicative collection system which was sending urine back into her kidney instead of out through her bladder. Our amazing, incredible, awesome urologist, Dr. Craig Peters, was truly a calming force as he explained that while she had stage 4/5 hydronephrosis and stage 4 reflux, there was a small chance she could potentially out grow it - but this would require daily prophylatic antibiotics for at least the first few years of her life. No surgery?! Let's try!
The daily battles ensued trying to get Grace to actually ingest the antibiotics each day. In new mom naivety and having heard how "bad" juice was for a child, that first year I would be on the floor in tears covered in green, antibiotic filled milk and water she would inevitably spit up all over me. Once we mixed in an ounce of orange juice at around age 1.5, things got easier... but not better. The UTIs came back. And then back again. They were becoming resistant to the antibiotics - our worst nightmare - and occurring almost every other week with high grade fevers and new types of medications. It became difficult to identify the end of one episode and the beginning of another. Mother's intuition kicked in, Grant and I discussed options with confidence, and we knew what we had to do - not that after the dramatics of this past year, my month-long hospitalized bed rest and Emerson's 63 day NICU journey, did I want to be in the hospital any more. But whatever it takes to protect my girls.
So the Friday before Halloween Grant, Grace and I went in for her VCUG procedure, identified that there had obviously been no improvement, and sat down with Dr. Kennedy - who was dressed as an Octopus for Halloween. He delivered the options- wearing his Octopus suit - and while Grant was enthralled by the robotic surgery, we agreed upon the "Open" surgery which has a 99% success rate, but leaves a sizable scar across her abdomen. That December 10th date seemed so far away, but now it is tomorrow, and I am still processing all that is happening.
Stanford's LPCH is great. In reflecting on my own major surgery there, I have nothing but positive memories- which is why I was inspired to get more involved with the Ambassador's Program and why we do the 5k every year. I fondly remember the doctors and students who worked with us, and of course I have this scar across my neck to never forget the positive outcome -- instead of my own kidneys shutting down, I am now able to be a health advocate for my own two girls!
With my own hospitalized bedrest last October and Emerson's 3 months NICU stay earlier this year, I remember reflecting late at night that God works in mysterious ways - obviously He had me endure my health obstacles as a teenager to help me find strength in those times to bring Emerson to life when some doctors wrote her off as a very late stage miscarriage. I remember spending 14 hours a day at her bedside praying and advocating - building friendships with every nurse and doctor so they knew how invested I was in everything they were doing for my precious daughter. The gratitude was overwhelming. I also remember the guilt of being torn between Grace and Emerson - which will happen again this week as I won't see Emerson for the 5 days I am in the hospital with Grace recovering. But it will be okay. A moms gotta do what a moms gotta do.
I have every confidence that things will go well tomorrow with Grace. To be honest, I am less worried about the actual surgery - I know she is in the hands of a skilled surgeon - than I am terrified of keeping a curious 2 year old still during recovery. Being stuck in a hospital room with a toddler is exponentially more difficult than my own bed rest or watching Emerson thrive in the NICU - but we have been blessed by an outpouring of friends who have brought over distractions of every shape and kind to help the hours pass by. Thank you!
When one of the rock-star moms from my moms group asked if we wanted a Meal Train set up for surgery/recovery, I graciously said, "no" as we had our fair share of doting upon earlier this year with Emerson's homecoming -- but that we did still appreciate prayers. While of course we welcome any prayers for Grace's surgery and healing, above all else, please pray with us in gratitude that God has given us an opportunity to fix what has ailed our little girl and in thanksgiving that as odd as our past year has been, God has gifted us with a beautiful understanding of the medical world to appreciate, navigate, and endure together whatever is thrown our way. We are so, so, so thankful.
Whether you call it history repeating itself, or that everything comes full circle - I know that there is a deeper calling here - that one day Grace will look at me and say, "You made me broken!" when she wears her bikini to a high school pool party and gets self-conscious- and I hope I am just there with open arms to hold her tight and instill confidence in battle wounds like my mom and dad always did.
Grant, thank you for always being my partner in navigating the curve balls we are thrown (2017 will be borning, I promise!). And mom & dad - thank you for being the most amazing role models I could have ever asked for, I couldn't imagine tackling any of this without the beautiful examples you've set for us, wise words, and help caring for whatever child I can't be with as we hit day 119 in the hospital out of my short, but long 2 years of motherhood.