Monday, July 7, 2014

It Takes a Villiage: Part 2

After Megatron's first surgery I wrote two posts, Thankful Thursday and It Takes a Village attempting to thank everyone that helped during that time.  I'm going to make another attempt at thanking the people who have gotten us through the last 6+ months.  I will never fully be able to express my gratitude to the dozens and dozens of people who have supported our family but I want to at least give it the old college try.  Settle in, it's a long one!
  1. The Cousin.  You gave my kid part of your liver.  You are so humble about the whole thing but YOU GAVE MY KID PART OF ONE OF YOUR MAJOR ORGANS.  You saved his life.  That's a big deal.  I will probably embarrass you with my thank yous until the end of time.  I'll apologize but I most likely won't ever stop.  Because of you, we are getting to experience things that all first time parents (well, ALL parents really) should get to experience: watching our baby thrive and laugh and play. 
  2. The Cousin's family.  This was no doubt a whole family decision and I know it was scary and stressful. . . and selfless.  You are all amazing people with such kind hearts.  I think of all of you every single day and strive to be a more thoughtful, giving person so that I can be a good example for Megatron.  
  3. Our pediatrician AND your family.  Holy moly what hasn't she done since this kid was born?  She started it off with a bang by saving this kid's life by getting him to a specialist when there was the slightest inkling that something more serious was going on.  She's answered every single one of my panicked phone calls and texts (with issues ranging from life threatening to minor, calm down first-timer, that's normal baby stuff!).  She has shown up at the hospital multiple times.  She worked us into her schedule multiple times.  She made a house call when it was too dangerous to expose Megatron to her office.  She arranged for The Pilot and I to have date nights.  She is so invested in this high maintenance kid that she refers to him as "our baby."  She is more often times than not, the one who "talks me off the ledge" when something is going on with this kid that scares me to the core and The Pilot is away.  And her family!  Her husband and sweet kids have shared her a lot over the last 11+ months.  We know that we have often pulled her away from family time and we hate that we've done that, but so deeply appreciate the time she has spent getting us and this kid through this insanity. 
  4. Our gastroenterologist AND your family.  Like our pediatrician, she spent countless hours dedicated to our baby and our little family.  She saved his life with the quick diagnosis.  She saved his life by catching many of his complications early.  She saved his life by doing everything in her power to keep his nutrition up despite the fact his body wasn't cooperating with her plans.  She saved his life by knowing when it was time to get on a helicopter to Pittsburgh.  Twice.  And like our pediatrician, she answered every panicked call and text.  And we deeply appreciate the time she has spent away from her family to come to our rescue.  We know that not all doctors would take the time to do that.  We know not all doctors would come meet us at the hospital instead of letting the on-call doctor deal with our high-maintenance babe.  Not only does she care about him, but also The Pilot and myself.  She cared enough to tell me to toughen up and learn to manage Megatron's health when The Pilot had to work, when all I wanted to do was tell him to call off and come home.  She also knew when it was time to get The Pilot home.  She cared enough to tell us that a medically complex child can be a marriage wrecker.  That stuck with me and we have done our best to make sure we stay united and strong.  Everything she does is noticed and appreciated.
  5. Megatron's transplant team at Children's Hospital of Pittsburgh.  I don't even know if I can come up with words.  Every nurse, patient aid, doctor, surgeon, Child Life specialist, physical and occupational therapist had such a huge role in not just getting Megatron through this transplant but THRIVING through this transplant.  The surgeons blow my mind with the fact that they can take an piece of an organ from a living donor across town, drive it to another hospital in an ambulance and put it in a child. . . a very small child. . . with microscopic arteries that need sewn.  I still don't understand how it can be done.  But they do it and it saved my kiddo's life.  Of course I thanked them all in person but that just doesn't ever seem like enough considering what they have done for us.
  6. Megatron's Fan Club.  This is basically every one we seem to encounter, but there is a group of people (some of whom chose to remain anonymous, though I know who some of them are) who surprised us all along the way with the kindest actions I could have imagined.  They have put together care packages for us and have stocked our fridge.  They made sure we didn't go into debt while maintaining a house at home but living out of state for 6 weeks.  They raked our yard and took out the trash and yard waste. They sent a box full of snap up pajamas during the hospital stays because that is what worked best to keep him warm while still giving nurses access to his IVs and monitors.  They sent cards, words of encouragement, and distractions! I carried one particular card around in my purse for 3 months because just reading it gave me some courage when I felt like I was all out.  They even decorated our house and gave us an amazing welcome home care package that included something for everyone in our family, including the cats.  All of it was amazing.  They somehow always knew what we needed, but didn't always know how to ask.  When going through a crisis, that was more helpful than they could have ever imagined.  Things as simple as a silly card or email went a really long way.  
  7. The Cat Army.  We opted to leave our cats at home (as opposed to sending them to stay with family) so it took an army to look after them.  At least twice a day someone was at our house feeding them and keeping them company.  I was so worried about them but once the cat army sprung into action, I knew they were in good hands.
  8. Lisa AKA The Cat Captain.  Someone had to coordinate all that cat loving and I knew it couldn't be me.  So Lisa stepped up as the captain of the Cat Army.  She had a calendar to make sure the 7+ people in the army knew when they were on cat duty.   And oh boy what didn't Lisa do?!  In addition to being Cat Captain, Lisa came to the hospital one night when The Pilot had to work, and she helped me hold Megatron down for an ultrasound.  After the transplant, she even came to a follow-up appointment when I was afraid the news wouldn't be favorable and I didn't think I could handle it alone (she turned out to be a lucky charm and the news was good).  She helped pass along info to our friends when I was too tired and stressed to do it myself.  She was a person to hug or vent to when my family wasn't available. She dropped food off at our house when she knew we had been stuck in a hospital and hadn't been to the grocery.  There are a million more things she has done for me and our family in the the last year (even longer than a year if I consider that she dragged my pregnant self through a half marathon when I wanted to crawl off the race course and cry in a ditch).  For each and everything she has done, I am forever grateful!
  9. Katy.  She also belongs in the Cat Army category but she's been even more than a soldier.  :)  I met Katy through Team in Training but got to know her better as she was Megatron's very first nurse at the pediatrician's office.  This girl sprung into action when things started to get scary.  She's been an amazing nurse but she's also been a babysitter, a person to vent to, a person to rake our front yard when the snow melted, revealing that we never had time to rake up the leaves.  She came to the house with our pediatrician when we were trying to keep Megatron healthy enough for transplant but he still needed his "well-baby" check up.  She drove to Pittsburgh just for a day when I was all alone and going a little nuts.  She AND her family "procured" some medical supplies when I couldn't bear to clean up another crib mess due to the feeding tube.  When the world felt really heavy, she was there with a solution to ease the weight.
  10. Jessie.  From meeting in 7th grade yearbook club to rooming together in college, I don't think either of us could have imagined the last year.  It started off as tons on fun when on July 15, 2013, I texted to tell her I had given birth to Megatron that morning and then she responded that she was in labor.  Our sweet babies share a birthday!  And despite having a newborn herself, in addition to a 5-year-old, she never let me check out.  She left voicemails just so I knew she was thinking about me.  When I finally got out of that newborn fog and could have a coherent conversation, she let me vent and offered excellent baby advice.  And then when things took a turn for the not so fun, she was right there.  Despite living 4 hours away in Pittsburgh, she was right there for me.  When we were in Pittsburgh for his transplant, she took time away from her family to visit the hospital.  When we were at the Ronald McDonald House, and I was going stir crazy, she stayed with Megatron, gave me the keys to her car and I took a 2 hour vacation at Target.  When things got scary when I was alone with Megatron one night, she met me at the ER.  She made me eat.  She stayed with me until he was admitted and turned right back around when he threw up all over the only clothes I had with me.  She made arrangements so I wouldn't be alone the next day as I waited for my mom and The Pilot to arrive.  She's been such an amazing friend for all these years but dang she's earned some bonus points for being such a strong shoulder for me this last year.
  11. Julie. Oh girl.  When our paths crossed at Ohio University 15 years ago, I could have never imagined the paths that would forever keep us linked.  Despite never really living in the the same city for more than a couple months, she probably knows me better than anyone.  So when she read between the lines of a text message I sent in January about Megatron's condition, she knew I was more than just struggling.  I needed a lifeline but didn't know how to ask.  She didn't even ask really, she just responded that she could make it work and be there within 36 hours.  I said ok.  She made arrangements to leave her two small children at home (THANK YOU to her amazing hubby!) and she drove 7 hours to show up in the PICU just when I thought I was about to fall apart. When The Pilot and I had to make the impossible decision for him to go to work, despite Megatron's health at the time, I never expected how scary it would be to be there without him.  My family took turns being there but they were all tired and emotionally drained too.  She jumped right in, even when it meant that both of us, plus two nurses were needed to get an IV started in Megatron.  She spent the night on the couch in the PICU with me...worst slumber party ever.  Betcha she didn't see that coming when our friendship started in a co-ed freshman dorm over cheap, "oh no, it froze in the freezer," vodka!  Thank you for showing up.  Thank you for being that lifeline that day and all the other countless times I've called this year and went silent on the other end of the line because I had such horrible news to tell you (Megatron's diagnosis, my grandma's passing, Megatron would need a transplant, etc) and I couldn't get the words out.
  12. The Pittsburgh People.  We had a choice between Pittsburgh and Cincinnati for Megatron's transplant.  There were other factors involved but a big one was that we knew we had a support system in Pittsburgh.  Jessie was there, Julie's parents and extended family (and an army of childhood friends) were there.  All people we knew were willing to stand in for our own families when needed.  And boy did they!  I've always joked that Julie's parents are my backup parents and if I ever needed them, they would be there.  And they were!  They visited and brought snacks to the hospital.  When it came time for us to learn how to take care of Megatron post-transplant, Julie's mom, Dorie, came to the hospital each day for nearly a week and sat with Megatron while we went with a nurse to learn the new "rules."  Once at Ronald McDonald House, they made sure we had plenty of snacks and dropped off homemade food from their family and friends.  They dropped off donations from their family and neighbors to help us pay for our 47 day stay at Ronald McDonald House.  Dorie even played with Megatron one afternoon just so I could go do laundry, make phone calls and read a was wonderful!  Every thing that the Pittsburgh People did helped ease the stress and burden of being in a traumatic experience, far away from home.  That was the absolute best thing anyone could have done for us during at time...ease the stress.
  13. Laine.  A fellow liver friend.  Her dad was a liver transplant recipient so she knows what "the wait" feels like.  She knows what it's like to have your family split when part of the family stays home and the other part has to travel for the transplant and recovery.  Once Megatron was listed for transplant and we started our wait, she organized an Insanity workout at her gym to raise money for our family.  It was overwhelming to see friends as well as complete strangers there to show support of our special little guy.  And that money was yet another thing to help ease the stress of being away from home for 47 days.  
  14. Our friends.  This is basically everyone listed above but there are so many friends of friends of friends who have sent lots of, what we call, mojo.  They added us to prayer lists and mojo lists and all kinds of lists.  There are the Facebook and Blog friends who constantly provided kind, positive words of encouragement...and still do!  They have all invested in our sweet Megatron and it shows.  This kid might be the most loved kid ever.  But really, thank you to all of our friends for all the love and support.  And please thank your friends.  And their friends.  :)
  15. The Pilot.  We've been through hell and back and this experience has changed us both.  I'm so thankful that he was the one I had to go through this with.  I can't even say he was my rock because both of us were crushed by this.  We have experienced every emotion together.  Luckily when I wavered, he was strong and when he was shakey, I hope I was strong for him. I'm so thankful that even though it was excruciating for both of us, he left Megatron and I in Pittsburgh while he returned to work.  We needed the money but more importantly, we needed the insurance!  I can't imagine how hard it was for him to be away from us for 21 days.  I'm thankful that he forgave me when I would send him not so nice text messages in the middle of the night because I was alone with a screaming baby and was so sleep deprived, I thought I might lose my mind.  He's taken a lot of weight on his shoulders yet he's still standing and laughing.  He is the most amazing dad.  He's been head first in parenting since I told him I was pregnant but watching him parent a healthy child fills my heart.  I crack up when I hear him in the other room singing to Megatron because his Old MacDonald rendition includes "Old MacDonald had a troll" and his "Wheels on the Bus" rendition includes optometrists and Wookies.      Also through all of this, he has so thoughtfully documented everything via photo, video and blog post so we won't forget anything and we will be able to show Megatron someday just how much we have all survived.  The best decision I ever made was to "wink" at him on  I love him more and more after each challenge we survive.
  16. Our families.  Last but only because I have trouble finding the words to thank you.  My mom and brother took a huge brunt of being the back up support I needed when The Pilot was working.  I will never ever forget the look on both their faces when they beat Megatron and me to the emergency room the first time I had to call 911, and they saw me being wheeled into the emergency room on a gurney with Megatron bundled up in my arms.  They have been in this head first from the day we got the diagnosis and have had their hearts broken several times over, right alongside me.  They made multiple trips to the hospital in Columbus AND Pittsburgh. When my brother was with me, my sister-in-law held down the fort at home.  And when she was doing something to help us, my brother was holding down the fort.  My niece and nephew, while so young, have been troopers.  They have colored pictures and sent tons of video messages to Megatron to cheer him up.  Almost every single "poke" or other medical procedure he needed, we used a video of his cousins singing to him and it always calmed him down.  My in-laws have also been in this head first.  It has probably been even harder on them because they are far away and relied on us to get information to them, which wasn't always easy when we where in the thick of things.  My father-in-law was in Pittsburgh for awhile too and helped us get out of the PICU from time to time.  He also drove us to see The Cousin a couple days after the transplant.  My mother-in-law probably had the hardest job.  She stayed in Indiana during the transplant to hold down the fort there and relayed updates to the extended families.  She had to wait on updates from us in Pittsburgh and I'm sure the waiting and not knowing what was going on as it happened was agonizing.  I think time stopped for everyone in our family.  Everyone just about dropped everything for us and we are so grateful.  We 100% wouldn't have survived this without them.  Thank you for raising The Pilot and I to not be complete wimps.  Liver transplants aren't for wimps!  We couldn't have survived without everything they have done, no matter how small or simple (bringing full strength Pepsi and a hair brush to the hospital and sending us questions to ask the doctors are just two things that come to mind!). They continue to be at the front of our support system as we navigate post-transplant life.  They are helping us find our new normal and will always be ready to spring into action whenever we need them, and for whatever we need them for!  


  1. Now that my tears have slowed down, I can write you a message. While I was not in the fold, I think many of us know and feel your hurts, pain and love. We love your son and have prayed over and over for him, you and the family. Blessing for you all and happiness through out you lives. You and yours are gifts to many of us, even if it's through FB postings. Hugs Jim and Margaret McMahan