Sunday, August 31, 2014

Day in the Life: Megatron at 13.5 months

It's been about 3 months since I did a "day in the life" post so I thought I would do it again.  Mostly for myself.  Time seems to be flying by lately (I mean, this kiddo is SIX months post-transplant this week!) and I don't want to forget these baby days.  So here is what we did on August 28.

My alarm went off at 6 am but thanks to an hour long Jillian Michaels workout the night before, I was sore and exhausted.  I finally dragged myself out of bed around 6:20 am and shuffled my way downstairs to get Megatron's meds ready.  The past couple weeks he's been sleeping soundly in the morning and we have to wake him up to take meds at 6:45.  I hate waking him up but luckily he's usually pleasant.  Today though?  He was tired.  As soon as I picked him up, he laid his head on my shoulder.  Something he rarely does.  

After meds and a bottle (7 ounces still but now we are mostly on whole milk with a splash of formula-mostly just using up the last canister of formula), he's usually ready to play but today he was very clingy.  He wanted up, but not really.  So I put him down.  Then he tried to bite my leg.  
He finally entertained himself by emptying his diaper bag while I made breakfast for myself.  When he got quiet, I looked over to find him trying to pick a piece of dried food off the floor.  Looks like I missed it with the mop the night before.  Gross.


After chasing him away from the cat water bowl and from trying to pull a lamp over, he finally played with his toys while I ate.  After I was done, I took him upstairs so I could get dressed.  We have some toys in our bathroom but recently he likes to play with the hangers that are on the floor waiting to go to the basement with the laundry.

We went back downstairs and played with toys until it was ready for his second breakfast.  I made him a whole grain waffle with butter and some bananas, a cup of whole milk and one of his after breakfast meds.  
Yup, a Valentine's Day bib.  Might as well get more than one day of use out of those holiday items!  He looks proud because he finally figured out the sippy cup and loves to do it himself.
As soon as I cleaned him up from breakfast, I put him in the Pack'n'Play so I could run to the garage to set up the run stroller.  I also ran to the backyard to dump the water from his baby pool.  We were splashing around the day before when a pop up storm rolled in.  By the time I got a chance to go dump the pool, it was prime mosquito time.  I am already recovering from being a buffet for the mosquitoes a couple nights ago, so I left the pool in the middle of the yard.

I came back in to find Megatron chewing on the rail of the Pack'n'Play.  Teething and boredom makes for a slimy play pen.  He smiled and inhaled sharply as I picked him up.  It's his way of saying he was excited I picked him up and got him out of baby jail.  I put him in the run stroller, handed him a toy and we were on our way.  Normally he falls asleep within the first half mile, but at mile 2.5 he was still awake.  He finally fell asleep a few minutes later, but I really only planned to go about 3 miles.  I had to keep going because I knew he wasn't asleep enough to be picked up and taken to his crib and stay asleep.  I was really losing steam by 4 miles so I did a lot of walking that last mile.  I was about to just go home and sit on the front porch while he slept, but he woke up sooner than usual, so I started to head for home.  We got in a smidge over 5 miles.  And I was feeling it!  
I feel bad picking him up when I'm all sweaty so I kind of held him out and plopped him in the family room.  He played while I attempted to stretch.  So sore!  More from Jillian Michaels than the 5 stroller miles I think.  I took Megatron upstairs and put him in the baby jail that is in our bedroom while I took a quick shower.  When I got out of the shower, this little face was peering at me from around the corner.  I sprung him from jail again.  He crawled around the bathroom and played with hangers....they make a lot of noise when they hit the hollow bathtub....while I finished getting ready.
Time for some laundry.  We went to the basement to get some laundry started.  Back upstairs I had to pin him down for a diaper change.  He tries to escape every.single.time.  I've tried books and toys, diaper changing supplies, cat toys, everything to try to get him to stay on his back for the diaper changes but no such luck.  He's wild.  

We read some library books (he actually sat through 4 books!) and played a little more until it was time for lunch.  We had some leftover pasta so I added a little Romano/Parmesan cheese to his (we are still trying to add calories wherever we can for him).  We also had some mixed veggies with edamame, and grapes for him.

While we ate, I iced my knee, which decided it was cranky.

After I cleaned him up from lunch and put him on the floor, he made a bee line for his new car seat which is still sitting in the living room.  I think we have a climber on our hands!  He face planted into the seat and crawled right in.  He tries to climb on everything!  He didn't get the memo that he's only 27 inches tall and a little too short to climb on too much.  That doesn't stop him from trying though. 

Since he only slept about 30 minutes in the stroller (instead of his usual hour), I was worried about him being cranky for his 2 pm physical therapy appointment.  I take that back.  I was worried he would fall asleep on the car ride there and I'd have to wake him up after a 10 minute cat nap.  I decided to leave early so he could sleep longer.  I brought a book to read in the car.  It was a perfect plan.  Ha!  For once, this child didn't fall asleep in the car.  I kept driving around thinking he would be asleep any second.  Nope, he just sat there, squealing.  I finally gave up and headed to his PT appointment.

We haven't been to PT in a month because he's been doing so well.  She wanted to see him again to make sure he was staying on track with his "emerging" skills: crawling on hands and knees and walking with assistance.  She was amazed with his progress!  She had him crawling and climbing on obstacles to gauge his strength.  He really doesn't need her help anymore, but they are going to keep him on their service until after his abdominal closure surgery in early October.  He might need some help catching back up after surgery.

After the 45 minute appointment, kiddo fell asleep in the car within minutes of pulling out of the parking lot.  Luckily he was still conked when we got home and I easily transferred him from his car seat to his crib where he slept for an hour.

While he was asleep, I worked on a few things on the computer, including printing a cover for a photo album we are in the process of making for him to look at.  

Once he woke up, he got pinned down for another diaper change before heading downstairs to have a small bottle and to play.  We are slowly decreasing that bottle and will replace it with a snack soon.  Once he was done, he was more interested in walking around than playing. He's getting more and more stable but still needs to hold on with both of my hands.  Sometimes he will take a few steps while holding one hand but then he starts to whine and reach for your other hand for help.  

I got him distracted with the box of ribbons that I showed him back when I did the last "day in the life" post while I made dinner.  Tonight we had grilled cheese but it was fancy!  Provolone, muenster and spinach.  I've been trying to sneak more spinach in our food because he recently stopped taking an iron supplement and because we are raising him vegetarian, I want to make sure he's still getting enough iron through his diet.  He also had a hard boiled egg, veggies and banana.  I had a salad too.

He was a clean plater!  And only a few pieces of corn made it to the floor and that wasn't intentional.  They stick to his fingers and fall out.  :) Notice the cat in the background enjoying a few minutes of rest without worrying about Megatron trying to "pet" her.

After getting cleaned up from dinner, we took some selfies.  He loves to look at himself on my phone.  I love his onesie.  

One can only take so many selfies so we headed outside to play on the swing set.  I love that the swing set is in the shade in the evening so we can go out without being blinded by the sun.  He likes to swing, but he's still a little small and starts to slump down in it.  He also loved going down the slide and walking barefoot in the grass.  He got a kick out of me holding him and then pushing the empty swing and watching it go back and forth.  I have no idea why but he was giggling every time I grabbed it and then let it go again.

I try to have him inside and heading towards the bath by 6:15 at the latest so he's all ready for meds and his bedtime bottle at 6:45.  He loves the water and now that he can stand, he likes to stand and the edge of the tub and watch it fill up.  This picture cracks me up because he wanted so badly to climb in.  He kept raising his right leg but obviously he's short and wasn't going to get anywhere.  

After the bath, it was back downstairs to get his meds and bottle ready.  Evenings are getting easier and easier.  We only have two meds given through syringes and one pill.  This is a lot fewer syringes at night than a couple months ago.  Progress!  At 6:45 I gave him his meds and then a bottle.  Again, it's formula and whole milk mixed.  He's still drinking 7 ounces before bedtime and when he gets up in the morning and since he's still so small and needs to gain weight, I'm not in a hurry to get rid of those bottles.  Plus he's still very interested so we will just transition from the bottle to drinking from a sippy cup for those "meals."

After he finished the bottle, I took him upstairs and read him a book, turned on his music, put him in his crib and didn't hear from him again until 6:45 the next morning.  Well, sort of.  He sleeps through the night but he's a noisy sleeper.  He sometimes randomly cries out, sometimes for a minute or so but then settles down again on his own.  I've read that some kids taking the same immunosuppressant have sleep disturbances, but he almost always falls right back to sleep so I don't have go to him.

I wasn't as productive around the house because of my run and then his PT appointment so I got to work after he went down.

From 7:30 to 11:00 pm I raced around:

I got some laundry started.  I called my mom while I picked up toys in the family room.  I unloaded and loaded the dishwasher.  While I cleaned the kitchen counter, I looked over and realized that the cat was watching PBS.  I had flipped on a documentary, Earthflight, all about birds.  Needless to say, the cat was in love.


Once the kitchen was clean, I made another mess.  I realized the bananas I had were looking really sad, and I doubted I'd have time the next day so I went ahead and made a batch of banana chocolate chip muffins.  Yum!  I also threw in another load of laundry.

While the muffins were in the oven, it was time for my least favorite chore: washing syringes.  Of all the chores associated with the baby, I hate this one.  It's not hard, it doesn't take that long, it's just something I really dislike doing.  Once they were all washed, I stuck them in the drying rack and moved on.  More laundry!

I washed up the mess I made from the muffins and then moved on to clean up the kitchen table, Megatron's booster chair and the floor around his chair.  That child can make a heck of a mess during meals.

Once everything was clean and I dealt with more laundry, I finally sat down to stuff some cloth diapers.  The cat tried to help but ultimately sat down to watch as I put the absorbent inserts into the diapers.  It's a mindless chore that I can do while relaxing in front of the the TV.
All ready to be pooped in!  :P

I finally went upstairs to go to bed.  I laid down and read for a few minutes to help turn my brain off.  I also reassured myself that The Pilot would be home the next afternoon.  Usually after a couple days of being on my own with Megatron, I start counting down the hours until I have some backup.  And after two really hard workouts while he was gone, plus taking care of Megatron, I was exhausted!














Wednesday, August 27, 2014

Mission Undo What the Baby Did: Update 3

Last week went much better than the week before.  I had over 5.5 hours of exercise.  I had a race at the end of the week but I tried hard to not slack off before the race.  I did skip the abs and arm workouts the day before and the day of the race but I got them in the other 5 days.  I was even able to progress each day with the abs and arms challenges.  They are definitely getting harder each day but I'm doing my best to hang in there with the schedule.

I also tried a Jillian Michaels yoga video.  It was HARD!  I had to modify A LOT of the moves and had to take a few breathers.  She moves fast through each move to burn more calories but it was a little too fast for my fitness level but also for the speed my brain can compute what she is doing.  I also somehow managed to pull a muscle in my hand during the workout.  Seriously?!  It took a couple days before I could do a push up with an open hand!

I was feeling a little run down so rather than trying another high intensity Jillian Michaels, I opted to do the post-natal rescue video twice.  It's much slower pace and focuses on strengthening the core but also incorporates some leg work that I've noticed has helped with some tightness I've had in my hips.

On Friday, Saturday and Sunday I got in some great mileage!  14 miles to be exact!  Friday was a family 3.5 mile walk.  Other than spending time together, the best part was that The Pilot pushed the stroller!  Saturday might as well have been a 4 mile swim.  For once I wasn't exaggerating and it really was 100% humidity.  It was about 70 when we got started but it felt like 90.  Katy pushed me through it though and we did a lot of running and finished just under an hour, which put me at pre-pregnancy pace....for walking but hey, it's progress.

Sunday was the jackpot though!  It was my first "real" race since having Megatron.  I've done two charity 5ks for great causes but this was a chance to race.  It was a quarter marathon, so about 6.5 miles.  I'll hopefully get a full race recap written soon but it was an amazing morning!

And since this is an undo what the baby did post, how about a picture of the guilty party.  He likes to steal my food.  This time he stole my nectarine and started gnawing on the core.

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!