It’s been a while since I posted about Mia, and that’s because…… well, …..I didn’t want to.
Mia had a really tough week or so. Last Friday, 7 days ago, she had the shampoo and P.T. Chair excursion, and she had a great time. And then Saturday the fun came to an end. To be honest, the last couple of weeks have been like a ‘black hole’ in my mind. I can’t really remember them without great effort. I remember the first week and a half…… that’s because so much happened and it was so sudden, so new. But now, it’s all beginning to run-together,……. so suffice it to say that last week/weekend was not good. It was, as they say, the bottom of the wave. Those steps backward that I hate. We tell our kids “Hate” is a strong word. And not to use it….. unless you really mean it. Well, I HATE those ‘baby steps’ backward because, frankly, they’re NOT baby steps! It seems I have such a hard time accepting that the positive/forward improvements have to be ‘Baby Steps’. But the Backward Steps are usually anything but baby steps. They’re more like backslides, or in Mia’s case, full-on complete slab to base, catastrophic Mt. Superior style avalanches.
Well, earlier in the week, and especially last week, I simply did not want to update anything. There was very little to update that I wanted to spend any time retelling or even focusing on what Mia was going through. It was, sincerely, a crucible of a week or more. This whole experience has been, of course, life-changing, to say the least. But last week was almost more difficult than the first week. Which makes no sense, because how could it possibly be harder than that?? Well, for me, and I think for Mia, it felt like it.
I didn’t post, because………. I didn’t want to.
I won’t tell the whole story of the last week and a half, but I will try to summarize.
Saturday last, Mia began a fever. Along with the fever came other concerns. Her blood pressure kept dropping. Her lungs got worse. The pressures in her new heart began to rise. The fluids draining out of her chest tubes began to increase, and the Oxygen saturation of her blood kept decreasing. Last weekend it came to a head…… there was talk about possibly having to put a hole in Mia’s new heart in order to lower the pressures (the same procedure we did on Mia’s original heart, called an atrial septostomy), and then Mia’s Kidneys began to shut down. Without urine output, the potassium builds up, and this can jeopardize the heart, so they began talking about dialysis. Dialysis on an average patient is bad enough……. on a heart transplant patient, it is not something that is done casually or without incurring significant ‘downstream’ repercussions and added risk. So, when I could no longer keep my eyes open last Sunday night, Dr. Ngan convinced me to go to sleep. We agreed that they would wake me up if or when her K+ (potassium) reached 6.4, and that dialysis would be intitiated at 6.5.
Oh, but first, I must digress. Earlier in the week, as things had gotten worse, we were visited by some beautiful friends who offered to help us. As I have said, Mia has been visited by some amazing people. I can’t list them all. But suffice it to say that she’s been assisted by Angels and friends on many levels. Two such people, Anne and Cynthia, gave all three of us a gift last weekend, amid the chaos and turmoil of the C.I.C.U. and this incredible Rebirth. Sunday was about the third (?) time I’d left the hospital since this whole thing began, and I visited Anne and Cynthia, who helped me to work through some of the trauma I had endured in watching Mia ‘code’. I know I have mentioned to some of you what it was like, for me…… but I can’t really explain it. It is something no one should have to see, or experience. And, at the same time, I could not deny it. I know I had a choice to avoid witnessing or participating in this……. ‘thing’ that was happening to my daughter, but was impossible to turn away. I felt like, if this was truly going to be the last time I saw my daughter alive or in this life, then I wanted to take in every single aspect, every single moment, to remember every single thing I could, to bear witness to her life…….. and what I began to think was going to be her death. And, I can’t explain everything that went through my head, everything I saw or felt, (and some things I may never share with anyone but Mia?), because it seemed to be happening on separate planes, like there were multiple ‘realities’ going on at the same time? Time seemed to run slow…… and then it would speed up. I heard everything that was going on, and being said, and then there were periods of complete, profound silence. Later, I told Quinn I was embarrassed for fear that I had made such a commotion during the ‘code’, remembering and thinking that I had been wailing or screaming throughout the ordeal. But he tells me that I didn’t make a sound……. save once. And that I just kept moving. Interesting.
I had asked Quinn watch over Heidi, so that she wouldn’t have to see everything that was happening and since I knew I couldn’t be there for Mia AND for Heidi, too. (Thank you, Quinn.) And then I poured my soul and my spirit into my daughters. I spoke to her. I spoke to God. I refused to accept what I saw as inevitable. I thought, if I willed it enough, if Mia could hear me, she would fight. She would stay. For Eli. For Heidi. For me. And for her. I refused to accept this as the end of my only daughter. My precious MiaBella.
And then, as if by design (for surely, these people are true professionals) they began to move equipment into the room, and Eric Scaife, the father of Mia’s classmate Jack, came in and asked Heidi what she was doing there? And Heidi said two words, “It’s Mia.”
I watched as Dr. Eric Scaife made an incision in the side of my daughter’s neck, I knew it was an electrocautery knife because I saw the smoke curl up from her skin and the layers peal apart like magic. I was impressed with the intention and confidence in his movements and in the calm urgency as he worked to deftly place a tube down her vein and into her heart. I watched all of this as if I was doing the surgery myself, and wanted to refuse the truth of what was happening.
I saw the sweat on the foreheads of the beautiful men and women, (Drew, and Torrey, and others), as they continued to pump precious life into my daughters still and quiet body. I can see the color of the blood as it left my daughter and soaked into the sheets on the bed, and on the floor. It was so incredibly red. So RICH. So pure. It was the color of “Life”. It was so profoundly sad and yet, so beautiful at the same time. I wanted to collect every last drop of it….. and never let it go.
It was incredible. The air seemed to ripple…… to fade in and out. My body tingled. I prayed like I’ve never prayed before. I knelt upon the floor outside my daughters room and I called to everyone who had passed before. I asked them to give Mia courage. To be with her, to reassure her, to make sure she wasn’t scared. I asked God to keep her spirit safe…… for now. And I prayed that she not be asked to leave. I didn’t want her going too far away. Not yet. Not yet. We weren’t done. Mia wasn’t done. I kept telling her, “Don’t you DARE give up! Don’t you Go!! Brickey’s don’t give up!!”
Without Anne and Cynthia, I couldn’t have shared that today. Anne helped me to see this incredible and unimaginable moment in our shared life as just that. Instead of seeing it as the End of everything, it could also be seen as the beginning of something else. Indeed, it had to be. And I recommitted to the idea of being Mia’s father.
And she didn’t. But, I don’t think she decided what she wanted until Sunday night at about midnight. And thus, we find ourselves back to where this journal entry round-about sorta began. As Anne reminded me, I needed to be Mia’s father. To stop living in the moment when her heart stopped. Stop thinking about my daughter dying, and begin thinking of my daughter LIVING! So, I went to her bedside and I whispered into her ear. And I told her she was wanted. She was needed. And I refused to believe she would not survive. I called her to her Courage, the way Cynthia & Steve Wand taught me. And I told her I BELIEVED she would live. I told her I wouldn’t leave her. And I asked her to stay. Despite the pain. Despite the trouble it was going to be to live. And, I think she heard me. Because fifteen minutes after I went to bed, at Dr. Ngan’s behest, and while I slept, MiaBella began to pee. I went to bed and her K+ peaked at 6.3 sometime between 12:00 and 2:00am. And by 6 am it was down to 4.8!! It would continue to lower over the next several days until it was within normal range.
Skip ahead…… after another successful (negative on the Rejection) Cath Lab biopsy on last Tuesday, Mia has done nothing but improve. She had a tough day after the biopsy, and we were afraid we were headed backwards again when she didn’t pee until late Tues. night, but in the end, she did. She is improving as I write this now. I am sitting at her bedside, and this journal update thing has taken ALL day to write. But I wanted to get it done. I wanted everyone to be able to also feel the joy I have right now, in knowing that MiaBella is still here. It doesn’t do me any good to talk too much about the fact that Mia’s life has changed. And that of the rest of our family. If we don’t know that by now, we will. And just like the rest of this past month, it seems to me that whatever will be, will be. That doesn’t mean we won’t continue trying or fighting! But, it also means that everything is exactly as it should be, and is as good as it is. And I can look over and I see my daughter’s beautiful face, with pink color in her cheeks, and I can see the rise and fall of her chest as she breathes, and I can even see the impossible beating of her Beautiful Heart within her perfect breast. MiaBella Heart. “My Beautiful Heart”. Yes, it is.
There are so many people all over this world, so many beautiful, caring, lovely people, putting your shoulders behind Mia, lending your energy, your love, your Faith and prayers, and your Love…….. You all will NEVER know how much I appreciate it. Thinking about you all brings tears to my eyes. Tears of gratitude, joy, hope, and awe. I also wish I could see each of you….. to give you a hug. To look into your eyes and tell you how much I appreciate you. I pray that something like this never touches any of you, or your children, but I know that it could. And I want each of you to know that I will be of service to anyone of you, or another, who should ever find themselves in our shoes. A dear friend, Andrea, sent me a beautiful note that described it perfectly. I will not be able to make things better. I may not even really be able to ‘help’ in any tangible way. Because when this kind of thing happens to a person or a family, there is nothing anyone can “do” to make it better. Give me back my child. Make it go ‘away’. Take me back to my ‘old life’. These are the things the parents want. And will never have.
Having said all that, I WILL want to help……. just like all of you. And, I want to thank so many of you. I keep coming back to that! Because you have all been so amazing. I never found out who the “lady with brown hair” was that came and weeded our garden last week? 😉 Thank you. I just found out who kept dropping off Great Harvest loaves of bread and super yummy cookies every day at the house. I ate my share, and kept the nurses and docs in the I.C.U. content with the rest. Thanks Brad and Tracy. I found out Heidi’s cousin’s held a fund-raising House Party last night in Ogden…… I think the O-Town Police were sampling carrot sticks and chicken wings, while the kids jammed to the numerous rock bands that played for free?! (only one person ended up going to the hospital. We hope she’s ok? Do we need another benefit concert??)
To Holly, my cousin Matt and Nan, Amy, our Folks, Missy, Camilla, Lori, Stacie, for taking care of Mr. Eli; to the kids who have served us lunches, dinners, and snacks….. Uncle Scott for morning coffee and cookies throughout the day, Tiffany for morning coffee and words of support and a solid shoulder, to Ellie Bellie Full of Jelly- for your incredible skill and love of both your art and my daughter, to Brian….. for this website, the support, the words, the prayers, the love. And his incredible wife! Helena. Behind EVERY great man is an even better woman! (I didn’t just say that…. it’s a fact.) I will never eat better biscotti! or banana bread. To Laurie, and her son Jordan, and his Platoon, who sit in harms way, and take the time to care for my daughter and to honor her in the most meaningful way they could. To Laurie again, for introducing Mia to Paul Cardall, and to him for his gift and willingness to help. Whether you know it or not, Mia will be joining you on another hike up Mt. Olympus one day! And I’m already working on a trombone and piano duet! 😉 To Allyson, for being the future accidental heart transplant mentor; and all the people on the transplant team.
To Dr. Eric Scaife and the rest of the Liverators and Team Donate Life!! Who just finished racing bicycles across the entire United States in a week!!!! to raise money for transplants like the one my daughter just got. And to ride with “MiaBella- Peace, Love, Strength” bracelets, and in her honor. WE are honored by your show of support and dedication. I only rode a bike across France, and that was when I was young and strong, and in the company of a dear friend to this day. 😉 And I thought that was ‘hard’?! Your achievement is impressive and worthy of great praise……. if not a complimentary beer or two when you get back home!!
To our friends and family in Germany, JaKaReKa; to Heidi’s family in Italy & Switzerland (Flora, et al); to my old Monson Road buds in Canada and N.Z., and wherever else you are? To friends and classmates in Oregon; fellow Yellow Twinkie ‘Taku Stowaway’ VW bus mates in Minnesota, and all our friends/family all over the United States. To the numerous other medical friends/docs/nurses/etc, who may not have been directly involved in Mia’s care, but still came by to check and give a hug! To our latest Fashion Consultant, ‘Mean Jean Hindley’ and her new line of I.C.U. Bed-Friendly Tops! To Marty and Nickie, for sharing my love of mashed potatoes and gravy. To Amy, for loving and supporting Heidi so well.
I’ll need an entire entry to thank the people like “Ellie Belly Full of Jelly”, aka Dr. Hirshberg, for her excellent clinical skills and equally wonderful interpersonal virtues; and the C.I.C.U. Attendings, Fellows, Residents, Nurses, Techs, R.T’s, P.T.’s (I think we’ve got something going with the narcotic “Junkie Aerobics” exercise routine! I smell syndication and a possible video series?!), and more….. whose permission to include their many names here I did not (yet) get. This has truly been one incredibly fantastic ride.
Before I close,…. and if you are still reading?!….. I want to acknowledge two groups of people the most. Because, when the going gets tough, and when I’ve been down, or when our spirits have been the lowest, and I haven’t used my best virtues, they are still always there. And that is our family: our parents- Bob and Jan, Pete and Sue, and Joe in Arizona; our sisters- Andrea “A.B.”, and Holly, and their kids; my brother-David and his family; Heidi’s Uncles and Aunts, and their families (Mia’s so excited to see “the Girls” from N.Y. she can’t stand it!); my own cousins and lovely family of Uncles and Aunts; and last, but not least, my incredible staff.
The ladies at our dental office are the most amazing people. Period. But, most of you already know that. Well, when this happened to Mia almost a month ago, I didn’t even have to call Krista, or anyone else. Lori, Krista, Amy, Danielle, Britney, Lu, Cheryl, Erica, and Miss Jenny took care of everything. They, along with Dr.’s Adam and Michael Van Leeuwen; and the one and only Dr. Kelly Carroll, all helped to take care of our patients while I stayed by my daughter’s side. I couldn’t be blessed by better coworkers and friends. They really are wonderful people, hard workers, and like Elf kept saying on KCPW, they ARE pretty good looking, too! 😉 (sorry, had to say it.) We love you. (ps. you can all forget about those raises this year! sorry!) jk 😉
So……… it’s 4:00 in the morning, and time to think about some sleep. I began this update this morning at 7 am…….. thus, the lengthiness and rambling nature of my pondering. Not being one prone to exaggeration, of course, I can always be trusted to describe the situation on the ground like an investigative reporter.
In the end, It’s All about the Love! ….. that, and clean floss. And bracelets.
Peace, Love, Strength!!
Thank you to the Family who donated MiaBella’s new heart, and provided an avenue for all the Love we see circling around this family and this community. We are eternally grateful.
tbrick and themBricks
LAST MINUTE BUSINESS HOUSE CLEANING:
TODAY!!! Saturday, June 25th
Dinner Fund Raiser at Egg’s in the City, on 17th E. 1300 South!
See you there!!! Drop by to Celebrate Life!!! and Help us raise money for our New Charities: Myocarditis Foundation, and our personal Goal of supporting the Ecmo efforts at Primary Children’s Medical Center. (I want to buy them another Ecmo machine…… like the one that helped save Mia’s life and give her a second chance. It’s only a cool $50K or so.) We Thank You in advance. (I also Thank Mitch, Amy, Holly, and Heather at E.I.T.City, and everyone else who’s donating and supporting. We Love you!)
And! I just received a text from Eric Scaife! I knew if I took long enough he’d finish! Across the country in 7 days.??? Seriously?? Impressive.