Tuesday, August 19, 2014

Mission: Undo What the Baby Did: Update 2

I fell a little short of my weekly goal (at least 4 hours of exercise) last week.  I came in at 3.5 hours.  I only missed one day completely and if I would have planned a little better, I would have been right at the 4 hour mark.  We were road-tripping on Friday and I should have just done a quick workout before we hit the road for home but I didn't.  Oops.  Next goal: plan ahead!

I did spend 30 minutes on the treadmill at the hotel while we were away.  And it was about 100 degrees in the fitness center.  Maybe that counts for extra time??  I was dripping as I walked back to my room which was luckily not too far away and I didn't run into anyone. Not that it would have mattered, the hotel was full of gaming convention attendees and airline employees.  There's only one airline employee that I ever try to impress and he was sitting in a hangar somewhere proving he knows how to operate the windows in the cockpit so I knew I would be cleaned up before I saw him again.  Anyways...

Why, oh why do they put mirrored walls in hotel fitness centers?  I do not need to stare at myself while I sweat buckets.  Also unnecessary?  The windows behind me that faced the lobby.  I do not need all the hotel guests looking at my sweaty back!
I made it to day 9 of the arms and abs challenges but it's getting hard!  My theory is if I don't successfully complete a day, then I have to try it again.  Once I finish it, then I move on.  That means I did have to repeat a couple days (and then missed Friday completely).  Ultimately it will now take me more than 30 days to complete the challenges but it seemed like cheating if I don't actually complete each exercise outline on a given day.

On Saturday, I got my butt kicked by Jillian Michaels.  I attempted one of her hour long workouts again.  The first attempt I only made it 45 minutes before I waved the white flag.  This time I stuck it out the entire hour.  There was only one move that I could not do at all.  As in, my brain couldn't even figure out how to attempt it.  And then I did have to use her modifications quite a bit.  But I survived an hour.  I was dripping though!  And then when I tried to walk down the stairs afterwards, my quads were shaking.  Fun times.

Not so fun?  Doing that Jillian Michaels workout at 8:00 pm and then making plans for a 4 miler at 9:00 am the next morning.  The plan was to do a pretty solid run/walk but after I woke up and realized every fiber of my being ached, I knew I would have to just get through the miles.  Katy met me at my house, I strapped Megatron into his stroller and we were off....very slowly.  We only did two run breaks and walked the rest.  But it was over an hour of exercise and even though I was sore, I still got it done.  Plus, I got to have adult conversation which is hard to come by when I'm home alone with Megatron. 

Monday, August 18, 2014

One Year

One year.  It's a miracle that we are still standing. It has been the longest, yet fastest year of my life.  It's been the most heartbreaking, yet joyful year of my life.  It's crazy how it could have been all those things at once. I've heard people say about parenting that the days are long but the years are short.  I cannot think of a more accurate description, particularly because of our circumstances this year.


It started with my unexpected early delivery of Megatron.  That seems like a lifetime ago.  I remember thinking at the time that those first 24 hours of his life were the most difficult thing I had been through because I wasn't allowed to see him.  Ha.  I can barely remember what it felt like.  Both because of the medications I had to be on but because we have been through SO much since then.

Ten days after he was born, my beloved grandma and whom Megatron was named after, passed away.  Then there was Megatron's diagnosis and prognosis.  Then The Pilot's uncle passed away after a very short illness.  Then Megatron's first surgery.  Then I found out my dad was living a lie and was making morally questionable choices.  Choices that made me feel it was important to shelter myself and Megatron from, so I had to distance myself from my relationship with him.  Like an ocean between us kind of distance. Then my brother's family lost a furry member of their family, one of their cats.  In our family, cats are family and when any member of the family hurts, we all hurt.  Then I had to walk away from a career I truly enjoyed because we saw the writing on the wall.  We wouldn't be able to balance my travel schedule with The Pilot's schedule while taking care of Megatron's complex medical needs.  Then my parents sold the house where I spent my formative years and ended their marriage after 41 years.  Again, when one member of our family hurts, we all hurt.  My heart was breaking not just for myself but for my mom too.  Then Megatron's liver started to fail.  I had to abandon my annual trip to Disney for the marathon because my sweet boy was in intensive care. He developed life threatening complications from his liver disease.  We came within days of losing him.  Then, in the greatest act of selflessness, The Cousin gave Megatron part of his liver.  Then my mom's cat passed.  He was a kitty that we got when I was still in high school so he was just as much my cat as he was her's.  Things slowly started to get better.  Megatron finally started to grow and thrive.  He didn't look sick anymore.  We got to come back home after 6 weeks in Pittsburgh.  We have still had a roller coaster since Megatron's transplant, from another hospitalization and three more trips to the emergency room, to nutrition setbacks and minor rejection of his "big boy" liver but overall, things really started to settle and we worked on finding a new normal.  Then, two weeks ago, we had to say goodbye to one of our cats.  It was very sudden and heartbreaking.  This was the kitty who we assumed would be Megatron's buddy.  Wherever the baby was, DC was nearby.  I think he sensed Megatron's special needs and was there to "protect" him.  It felt like once again, we had been punched in the gut.

It felt like with each heartbreaking event, the Universe was trying to knock me down a peg; Like the Universe was trying to break me.  While from the outside, it may have seemed like I was holding up well and keeping a positive attitude but in reality, it felt like the weight of the world was crushing me.  On multiple occasions this year, I questioned what I had done in this life or another, to deserve all this.  I questioned if I had somehow knocked my karma out of balance.

Some days I still feel that way and it's a challenge to realize that our family was given two incredible gifts.  Megatron and his new liver.  But each day I become more and more thankful.  I believe that Megatron was born early so he could meet my grandma.  I think my grandma held on long enough to meet him.  I think he came early so that he could be a joyful spot through all of the grief that our family was about to experience.  I think the heartache we experienced from his liver disease showed our family not to take one moment for granted.  We hug tighter.  We say I love you way more than we ever did before.  We are closer than ever.  We learned what it means to be selfless after seeing what The Cousin did for us.  After seeing that donor blood saves lives, some of us overcame fears and donated blood.  We do our best to pay it forward whenever we can now.

I see so much kindness in people around me now and that is my reminder that we survived this because of the kindness of others. Sure, at the end of a long day, even an incredibly fun day, I sometimes lay down in bed and sob.  How are we still standing?  How and why did all this happen? Sometimes I'm still angry that my one year old baby is on 8 medications.  That three times a day I have to give him medications and then wash the countless syringes.  That I have to argue with pharmacies and the insurance companies.  That I have to be "that" parent who sanitizes everything in arm's reach of the baby when we are in public places because his immune system is suppressed.  That my dad walked away from the life and family he created. That we lost so many amazing family members this year.  But then I hear Megatron breathing or sighing in his sleep over the baby monitor and I'm put back in my place.  We were given a second chance with him and I need to accept those challenges.  So I flip through a couple pictures of him and see his smile.  He's been through more challenges in one year than most people face in a lifetime.  Yet he's still smiling.  And I smile because he's here.  And he's thriving.  See why I think this baby was a gift to not just me and The Pilot but to our entire family?

So with each day I do my very best to focus on the amazing aspects of our days.  I try to focus on how far Megatron has come.  Six months ago, we nearly lost him and now he's crawling and will be walking soon.  Sometimes I fail miserably but others days I want to shout from the roof tops.  "LOOK at my baby!!!  He just climbed up the stairs!  He just learned to use a sippy cup!!  He's amazing!  He almost DIED and now look at him!"  While I brag endlessly on social media about him, I try to refrain from blurting out to strangers in the grocery store that he is a miracle and just let them comment on what a peanut he is.  I just smile and nod.  Of course he is special but I don't want him to grow up feeling different.  He will live in a medical world but I want him to feel "normal," whatever that is.

I'm so thankful we did monthly photos of Megatron this first year.  Even though one was taken in a hospital and one was taken 2 weeks late because we were in a hospital.  Even though he looks so sick in the 7 month picture (2 weeks pre-transplant) and so skinny in the 8 month picture (2 weeks post-transplant).  I'm glad we recorded our year even though it was traumatic. We won't ever get the first year back, so even though some of it looked so scary in pictures, I'm glad we documented it anyways.

It's been a hell of a year and if I could change it, I would.  While we have learned to appreciate life more, I would still take back Megatron's liver disease if I could.  But I can't, so I will try hard each day to focus on the good things in our world.  And I will focus on restoring some karma in my life!  Because I still think it must be out of whack!










Happy First Birthday my sweet boy!  You are one hell of a fighter, that's for sure!
Megatron at his birthday party...with his smiling, plush liver that my brother and his family found online.  He loves it!  And see that thing sticking out the top?  That's the hepatic vein and he loves to chew on it. 

Saturday, August 16, 2014

Mission: Undo What the Baby Did: Update 1

My first week of keeping track of my workouts was a success!  My goal was to complete at least 4 hours of fitness activities in a week.  I hit 4.5 hours!  I also completed the first week of the 30 day abs and arms challenges that I started.  I'm halfway through week two and I'm just now starting to feel sore.  My abs hurt when I sneeze.  My armpits hurt.  Good times.

I did a 3 mile walk with the stroller last week with a new friend, Cathy, but then got in not one but TWO stroller-free workouts over the weekend!

First up was a virtual race with a group called Moms Run This Town.  It's a national, free running group for mamas and there is a local chapter here in town that is really active.  You could just show up and pick your distance.  I had plans to do 6 miles the next day so I opted for the 5k. The women were so welcoming!  They were all paces and probably the least intimidating group of women ever.  For three miles I got to know a couple of the ladies and we had a blast chatting, getting temporarily lost, taking selfies and getting our sweat on.  I hope to continue to get more active with the group so hopefully I can get to know some other mamas with small children.  This whole stay at home mom gig can be pretty isolating.

The next morning I met up with my other training buds.  I haven't made it to a group workout in several weeks because they meet at 7:30 am over the summer months.  And if The Pilot isn't home to do the baby wrangling, I can't go.  Megatron gets his morning medications at 6:45 and we don't have much wiggle room.  But The Pilot was home last weekend so I was out the door early both days!  My friend Katy (she's the rock star from my It Takes a Village post!) had already agreed to go 6 miles with me and push me.  And push she did!  She let me take walk breaks but then would tell me when to run again.  Which is just what I needed because I would have forgotten and just kept walking the rest of the way.  In the end, we tackled 6 miles (well, she did 9 because after 6 miles with me, she wanted to go have some more fun) in 1 hour 29 minutes.  That is the fastest average pace I've had since before things got so bad with Megatron at the beginning of the the year.  It felt great to push myself and be able to see what I'm capable of right now without pushing 40 pounds of baby and stroller!

Thursday, August 7, 2014

Finding my new groove

I'm still struggling to find a new workout routine.  I will say that not working makes it easier to get some form of exercise in.  Having a husband who is gone for several days at time though adds a degree of difficulty because any workouts that I want to do while he is away have to be done with a 17 pound wrecking ball baby trying to climb over me or heckle me from the stroller.  It's happening though.

I got in nearly 9 miles total last week, doing a run/walk combo.  That's nowhere near where I'd like to be but it's better than 0 miles!  I'm only at 3.5 miles so far this week but I have plans to get in at least 6 more by Sunday.  I've also recently added two "30-day challenges" to my routine.  I found two beginner arm and ab challenges where each day you build upon what you did the day before (with some rest days).  There have been lots of sit ups, pushups (modified for my current ability), planks, bicycle crunches, reverse crunches and chair dips happening in the family room while Megatron crawls (yes, CRAWLS!) all over the place.  Also part of my workout rotation right now is a Post-Natal Rescue DVD.  It is more directed to women who are more immediately post-natal but that's ok.  My fitness level is so sad right now, that the DVD is challenging but not discouraging. 

I did a free Jillian Michaels workout off Amazon Prime/Roku and damn near had a heart attack during the warm up.  I only made it through 45 minutes of the hour long work out.  She would probably have spit in my face or something had I quit on her in real life.  I was also sore for two days after the workout.  And I didn't even use the weights like instructed.  I'll definitely try again because ya gotta start somewhere.

Prior to January I never really did much exercise other than mileage.  I would just do my mileage needed to train for a particular race.  I could never seem to stick with a strength or cross training routine.  Of course the times I saw the most results in terms of my fitness and weight was when I was training for triathlons.  Mixing up the three sports made a huge difference.  Triathlons aren't really in the cards now and I need to be able to do short, more frequent periods of exercise in order to juggle Megatron while The Pilot is working.  I'd love to be all hardcore and take Megatron on bike rides too (in a mounted seat or a trailer) but even though he's a year old now, he's so tiny that the smallest bike helmets don't fit him yet.  Maybe next year.  Other than wrangling Megaton during his 30 minute, once a week swim lesson, I don't have access to a pool right now either.  Maybe next year.

Faster mommy!

This new workout routine is a completely new way of thinking for me though.  I'm so used to working out for an hour or more (sometimes A LOT more if I was training for a half or full marathon) but I can't really strap Megatron in the stroller for a 3 hour walk/run.  The goal I have set for myself is no fewer than 4 hours of exercise in a 7-day period (ideally more but for now I'm erring on the side of realistic).  If I need to break that up into 10 minute increments when I get interrupted by Megatron taking foooorever to eat his breakfast, then so be it.  I found an exercise log online that I printed so it's handy for me to jot down what I've done each day so I can be sure to stay on track.  Hopefully writing down my progress on a piece of paper that sits in the kitchen will help remind me to not slack off.  I'm going to also try to blog more because that has always kept me more accountable in the past.  Megatron sure isn't holding me accountable.  He's perfectly content if my only exercise throughout the day was to chase him away from the cat's water bowl....all.day.long.

My training partner is LAZY! He almost always conks out within the first mile.

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 magazine...it 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 match.com.  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!  

Wednesday, July 2, 2014

5, 15, 5, 0 and a broken butt

Training has been all over the place.  I'm on the slow road back to training after taking 4 months off but I'm struggling to find consistency.  I've had  5 mile weeks, a wonderful 15 mile week, then a random 5 miler then a 0 mile week.  Sigh.  I've done a workout video sporadically, which I enjoyed but can't seem to make it a habit just yet.

Despite becoming an unexpected stay at home mom at the end of the year, the first 4 months of the year, I was more of a "stay at the hospital" or "stay at Ronald McDonald House"  mom.  So once we came home, I had to learn how to stay at home.  It sounds simple but as any stay at home probably knows, it's not.  Even more so when being a SAHM was never part of the plan.  Especially when your new co-worker relies on you for every little thing AND is considered "medically complex."  So with learning our new normal, and playing catch up on everything we dropped when Megatron got sick, I've struggled to get back into a workout routine.

And I hate it.  I know I can do it and I will do it, it's just hard.  I've always hated summer training so that's not helping much.  Another thing that's not helping?  I seem to have an in identified injury.  I think I broke my butt.  Seriously.  My tail bone hurts.  A lot.  It has since my first workout since I came home in April.  It doesn't hurt while I walk or run, just while I sit and then it gets worse as I stand up. WTF?  I stopped running and just stuck with walking thinking that might help.  Nope, it's continuing to get worse.  Normally I'm not one to avoid the doctor but with all of Megatron's medical appointments and The Pilot's schedule, it's hard to find time.  But I'm also afraid he will suggest physical therapy, which I really don't know how I will schedule.  But I'm now wincing every time I get out of a chair so I finally made an appointment. It's not for another two weeks though.

In the meantime, I'll just keep trying to get back into the swing of things so I can get my body back, find energy (it's been lost in this mess also) and try to reclaim a piece of my former life.  Plus, the Dash for Donation 5k is in 10 days!  We have a team of 56 people racing to support organ donation and our little miracle baby!  Even with a broken butt, I'll be pushing Megatron in that race!!!

Wednesday, June 4, 2014

A Day in the Life: Megatron at 10.5 months

This post is more for myself and maybe even Megatron to go back and read years later to see what our days were like.  This is what we did today, June 4.  It was a "typical" day in that we didn't have any medical appointments.  It was spent mostly hanging out at home.

6:00 am:  My alarm goes off.  I attempt to be awake before Megatron so that I can have a quiet minute to myself and get his bottle and morning meds ready.  But yesterday I was exhausted after a very stressful couple days with not nearly enough sleep so I laid in bed for awhile.

6:15 am: I was in bed doing some "interneting" when I heard Megatron starting to babble over the baby monitor.  I went downstairs and prepared his bottle and meds while he cooed and babbled to himself.

6:30 am:  I went into Megatron's room and he instantly kicks his legs down onto the crib mattress (which he does when he's excited someone is there to get him up).  He then does his new party trick, rolling over very abruptly and pushing up.  This is a move we've worked so hard to accompish in physical therapy so it warms my heart every time I see it, even though it's getting more and more difficult to change his diaper these days!  I change his diaper and clothes (he peed through his diaper.  He slept for 11 hours and his diaper just couldn't contain what he had to offer.)
Can you imagine waking up this happy??




6:45 am: My phone alarm goes off to tell me it's time for his morning meds (most importantly, his immunosuppressant, which has to be given every 12 hours without much wiggle room).  He does great for almost all of them.  By the last one though, he's ready for his bottle and starts to squirm and fuss.  This is when it gets hard for me because I have to hold him down....and he's getting stronger.

6:50 am:  I give him his morning bottle.  He inhales an 8 ounce bottle! 
 Between 6:45 and 7:15 am each morning, it's a bit hectic feeling since everyone is starving.  The cats hover over me while I sit on the couch feeding Megatron. 
After he lets out a huge, manly burp, I put him in his Bumbo chair to play while I fed the cats and myself.  He can sit up on his own now but tends to fall backwards since his abdominal wall is still open from the transplant.  He doesn't have the abs to catch himself when falling back.  So if I have to walk away, I either put a bunch of pillows behind him or put him in the Bumbo.  He tends to be a little pukey after he eats so the Bumbo helps keep him upright for awhile.

7:15 am:  Everyone has been fed so I sit down to wrangle Megatron while I trim his finger and toe nails.  I swear it feels like I just did it and they grow like weeds.  I thought it was hard when he was a newborn but dang, that was easy because I could do it while he was asleep.  Now its like wrestling with a greased pig.

7:30 am: I take Megatron upstairs to play while I get ready.  He hangs out playing with toys while I brush my teeth and put in my contacts.  When I'm ready to hop in the shower, I put a blanket and some toys down on the bathroom floor and let him roll around.  Just today he discovered that the hollow bathtub makes a loud sound when he kicks the side of it.

Note the "baby catcher" behind him.  :)
The legs have been in constant motion since the transplant.
8:30 am:  Once I'm dressed, I take him into another room and sit on the floor and do some physical therapy exercises with him.  To him, it's just playing but I manipulate his arms and legs to get him to engage certain muscles.  His gross motor delays are only because he spent so much time on his back in hospital cribs so he's catching up quickly.  He's learned to sit and put weight through his arms when leaning side to side or to the front just in the last 3 weeks.

8:55 am:  I empty the diaper pail in his room so that I can take it to the curb for trash day and so I'm ready to put him down for his nap.

9:00 am: Nap time!  I change his diaper and he goes down easily.  The second I close his door, I am off and running.

9:10 - 10:45 am: 
  • I called an insurance adjuster back. Megatron and I were in a minor car accident on Saturday. Yet another thing involving this child that took years off my life.  We weren't hurt but my car is pretty mangled on the driver's side.
  • I threw in a load of laundry.
  • I scooped the litter boxes and then took the litter and the diaper trash to the curb.  The poor trash men and our trash can full of poop.  
  • Scrubbed my hands like crazy with soap and water.  :P
  • Mixed up a batch of Megatron's formula.  Normal formula mixed per the instructions on the package contains 20 calories per ounce.  My little guy needs all the calories he can get so we have a recipe to mix it so it has 26 calories per ounce.  The recipe is impossible to make single bottles so I mix it in batches of 24 ounces.  And since it is concentrated, that is two extra scoops of formula per batch than if it was 20 calories.  He eats 25-30 ounces a day of formula so we go through A LOT.  A container of Similac lasts us 4-5 days.  At $24.99 a pop, I am mastering the art of scouring the internet for coupons, combining them with Target sales, promotions and coupons to get the best deal possible.  I expected this kid to eat us out of house and home when he got to adolescence but within the first year?  Yikes.
  •  I sanitized some toys that had either fallen on a dirty floor or had been traveling around with us over the weekend.  We are currently using a hospital-grade sanitizing wipe for things like this since he has a weak immune system. 
  • Chatted with The Pilot for about 3 minutes in between his flights. 
  • Worked on a couple blog posts.
  • Folded a load of laundry and got another started in the washer.
  • Listened to Megatron start babbling again after only an hour asleep (normally morning naps are 2 hours) and wished and hoped he'd fall back asleep.
  • Loaded the dishwasher.
  • Took some yogurt out of the freezer so it would be thawed to give to him at lunch.
10:45 am:  After listening to him happily talk to himself for about 15 minutes, I went into his room.  He squealed in excitement when I opened the door.  I changed his diaper and took him downstairs.

10:55 am:  I gave him one of his mid-day medicines.
He was trying to look at one of the cats walking by.  Nevermind the Valentine's bib.  :)
11:00 am: Lunchtime.  He suddenly has a hollow leg, which is a great thing since he was a little slow to gain weight in recent weeks.  He put away yogurt, cantaloupe, shelled soy beans with butter and a few bites of my Spanish rice and black beans.  I had the Avett Brothers Pandora station streaming through the TV and it cracked me up because when he heard the banjo at the beginning of the Avett Brother's Live and Die, he spun around to look.  He did the same thing for Neil Young's Heart of Gold.  He has good taste in music.
11:45 am: (Meal times are slow with this kid!) I put him in his Bumbo to play with toys while I cleaned up the lunch mess.

11:47 am: I realize he has figured out how to silently escape the Bumbo chair because when I walked by, he was laying on the blanket playing with the toys that would have been out of reach in the Bumbo.  I promptly take the Bumbo in the other room so we can pass it along to someone younger.

11:50 am 12:00 pm:  I carry Megatron to the basement to do another load of laundry.  I seat him in the clean clothes laundry basket.  He sits and plays with the clean socks and looks confused as to why he's sitting in a basket.

12:00 - 1:00 pm:  Megatron and I play with toys upstairs.  It amazes me how long his attention span is.  He opens and closes the lid to a toy at least 20 times.  As he plays, I start to dig through the bin of toys, pulling out things he has outgrown so I can pass those along as well.  He starts to get fussy so I think another nap is needed soon.  He gets a diaper change and a bottle.

1:10 pm:  Afternoon naps are hit or miss.  They can be anywhere from 30 - 120 minutes.  I cross my fingers for the latter since he didn't sleep quite as long in the morning.

1:11 pm:  I run down stairs to do more laundry.  I was hoping to get some cleaning done during the nap but the insurance adjuster calls me back and I spend the entire nap on the phone. :( 

2:30 pm: Megatron is babbling in his crib.  I leave him be for a few minutes while I deal with laundry yet again.

2:35 pm:  I open the door to his room and get another squeal of excitement.  This kid cracks me up.  We head downstairs and I grab the Bumbo since I decide I want him sitting facing me for a few minutes.  I show him the Beads of Courage he earned in the last month (we picked them up when we were in the transplant clinic in Pittsburgh recently) and he watched as I added them to his collection.  He was enrolled in the program when we were in Pittsburgh for his transplant.  Each time he has a medical procedure, he earns a bead.  Each bead represents something different such as a "poke," an ultrasound, a blood transfusion, an emergency, etc.  He even has a special transplant bead.  The Pilot and I earned a graduation bead for learning how to take care of our special man post-transplant.  It will be a way for us to share with him when he's older just how much he's been through.  It's also a visual of how far we've all come.
New beads on the left, ALL of his beads on the right.  He's earned close to 200 since his birth!

2:45 pm:  Megatron helps me with more laundry.  I hope The Pilot doesn't notice that there might be some baby drool on his clean socks.

2:55 pm:  I had saved a baby wipe box that we got when he was a newborn to use as zoo animal enrichment a sensory box. I filled it with some pieces of ribbon (that were actually taken off the leftover programs from me and The Pilot's wedding).  Free toy = 20 minutes of entertainment!  He was fascinated by sticking his hand in the box of ribbon.  Then he'd hold an end in each of his hands and pull until eventually one hand would let go.  He then moved on and was playing with the lid of the box.  I showed him how to push the button to make it open and he seemed to catch on quickly.

3:15 pm:  We take some selfies because this kid loves to look at himself on the phone.  As always, the drool is a nice touch.

3:30 pm:  Cuddles and another bottle followed by more playing.

4:00 pm: I gave him his mid-afternoon medicine.

4:30 pm:  I packed him up in the car and headed to the airport to pick up The Pilot.  It's only been a few days of having one car and it's already old!  It took us nearly an hour and twenty minutes to drive about 25 miles.  Boo.

6:30 pm:  We picked up Subway on the way home and ate quick while Megatron munched on puffs and more cantaloupe.  Normally he would get more of a dinner when we aren't running so late but he has to have a bottle immediately following his medicine (so it absorbs the same each time) so I didn't want him to fill up an not eat his bottle.  Right now the high calorie bottles have a higher priority over table food.

6:45 pm:  He had his evening meds, including his immunosuppressant.  The evening meds are more difficult to give because he knows that is when he gets a multivitamin.  It's smells and tastes terrible.  And now he's smart enough to recognize it and almost immediately starts to fight it.  Tonight doesn't go as bad (the multivitamin isn't all over him and me) so we can quickly move on to his bottle.  He chugged nearly 8 ounces.  Normally he's pretty sleepy by the time he's done but tonight he was wound up.  I let him "climb" around on me for a little while but then The Pilot took him upstairs to read some books.

7:15 pm:  Megatron is in his crib but still chattering and rolling around.  He doesn't cry though so we leave him be and eventually he settled down enough to fall asleep.

7:30 pm:  I clean up the kitchen some and mix another batch of formula.  The Pilot comes down and unloads the dishwasher while I vacuum the family room.

9:00 pm:  We are loosing steam but we both stay up to try to get caught up on blog posts.

10:00 pm:  Exhausted and done for the day!