Monday, July 7, 2014

It Takes a Villiage: Part 2

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

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!

Thursday, May 15, 2014

Date night

So it's probably pretty obvious that there has been a disproportionate amount of stress to fun over the last 4 months.  Even one of Megatron's doctors has told us a couple times that having a medically complex child can be a marriage wrecker.  I can see that.  Determined not to let it happen to me and The Pilot, we've done our best to keep our sense of humor through all this.  We've tried to check in with each other often.  When I was in Pittsburgh though and he went back to work, it was hard.  I take that back, there are no words to describe how hard it was.  Even though we talked nearly every day during the 3 weeks apart, it's hard to stay connected when you are far apart and under a mountain of stress.

So to say we needed a date night is also an understatement.  We had the perfect opportunity last month..but the plans started back in December before we knew about the transplant.  Knowing we were about to go to one income, we weren't going to give gifts to each other for Christmas.  Then we heard one of our favorite bands, Arcade Fire, was going to be in town in April.  We took a risk and bought tickets as our gift to each other.  It was a risk because everything with Megatron was so uncertain. That concert was the very last thing on our minds starting December 31 when Megatron had his first hospitalization that started this madness.

After the transplant, I assumed we wouldn't be able to go to the show.  But after he was discharged to Ronald McDonald House, one of his nurses mentioned we would be home for Easter.  Forget Easter! That meant we'd be home for the concert!

We made it home and on the night of the show,  my mom came over, to hang with Megatron and The Pilot and I had a real date.  We even went to dinner.  Our army of supporters had given us a gift certificate to one of our favorite Japanese steakhouses.  It's a little pricey so we probably wouldn't have gone if not for Megatron's fan club.  It was soooo good!  And sooo nice to be out of the house and not rushing because there is a wiggly baby at the table with us.  We talked without interruption!  We held hands!  We pretended things were the way they were before Megatron.

After dinner we dropped off our leftovers at the house (trust me, you do not want your car smelling like Japanese steakhouse leftovers), kissed our sweet baby good night and headed for the show.

It was our lucky night!  We bought the cheapest seats possible, which was basically up in the rafters of the arena.  When we were making our way up, we were stopped by ushers at a table.  The show didn't sell out so they traded our tickets for tickets lower in the arena.  A lot lower.  We went from the 300 section to the 100 section and around the bowl until we were almost even with the stage.  Our view was amazing!

And so for a couple hours, we pretended we were younger than we are, that we didn't just survive the hardest 4 months of our lives and just rocked out. ❤️

Friday, May 9, 2014

4+5= tired and happy

The Pilot was home for several days so I was able to get out for a 4-miler on Monday...without my little sidekick.  Megatron does great in the run stroller but not having to push all the extra weight is nice.  I also got the chance to be reunited with the local rail trail.  It's close by but it's also flat, hardly ever crowded and there is nothing out there.  Miles of nothing.  And sometimes my brain needs that.

On Wednesday, I suited up and then waited.  Megatron and I played and worked on his physical therapy exercises until I started to see the signs.  The eye rubbing and yawning.  I grabbed that kiddo, plopped him in his car seat and were out the door with the run stroller.  Sure enough, about a tenth of a mile into the workout, he was out and I got to work.  I have a good 4 mile loop I can do from the house but I was aiming for five miles.  I ended up taking random streets in the neighborhood until I finally hit five.  It was the furthest I've gone since December and the furthest I've ever gone pushing the stroller.  I'm pretty stiff for sure but I'm so so glad I was able to get out again.  Plus, since I timed it with nap time, Megatron slept the entire time.  He woke up just as I was rolling him back into the garage.

I did a run/walk combo and boy do I have work to do.  My average pace was way over where I was last year.  I expected that but I also had the realization of just how much work I have to do.  I don't think it will quite be starting over like when I did my first half marathon 10 years ago but it won't be easy.  Hopefully my little buddy will continue to nap his way through my workouts! 

Saturday, April 26, 2014

A funny thing

A funny thing happened last week.  I had to have my annual lab work done (my physical was in February but we dropped everything for Megatron's transplant so I was just getting to the lab work).  This May be TMI but there's a point to this.  I've always been somewhat of a hard stick.  Sometimes they find the vein but then it won't actually bleed.  I've noticed this similar trend with my sweet Megatron also.

So I go in for my lab work planning to knock it out and get on with my day.  They poked me once but sure enough, it wouldn't bleed.  They got someone else who poked me again, this time in the hand.  They seemed to forget there was a person on the other end of that hand.  They were "digging" around trying to find the vein that they swore was there a second ago.  It hurt.  A lot.  And for some reason in that moment it hit me like a truck just what Megatron goes through all the time.

I was holding back tears.  This was the first lab work I've had drawn since about a week after Megatron was born.  So while I've been present for 99% of every poke Megatron has every received (which is probably pushing 75), I had forgotten just how uncomfortable it can be at times.  Sometimes it downright hurts.  And in that moment, it broke my heart that my baby has to go through that.  It's primal really.  As a mom, you want to protect your baby from pain, but in my situation, I can't.  I'm often the one holding his arm down so he doesn't squirm. 

I kept it together long enough to get my band aid and run out the door.  And then shed a few tears in my car.  And again at home when I told The Pilot what had happened.  It seems like such a small thing considering Megatron has literally been cut open from one side of his belly to the other.  He's had an entire organ replace for goodness sake!  Suddenly though, I could put myself in Megatron's baby socks (I haven't fallen for the baby shoe trap yet) and my heart ached for him.

I'm sure this won't be the first time something like this will happen.  I'm sure my heart will break for him over and over for things that aren't typical (surgeries, transplant issues, etc.) but also for things that are more normal (his first skinned knee, his first broken heart).  I doubt that will ever get easier.  For now though, I do take comfort in one thing.  Seventy-five percent of the time, sweet Megatron hardly fusses at all when getting poked.  In the past 7 days alone he's had three pokes and he only cried for one.  Even then, as soon as they loosened the tourniquet, he stopped crying and tried playing with the tubing that was drawing his blood.  I am so thankful that this kid is so easy going so far.  Despite all he's been through, he just seems to go with the flow.  I have so much to learn from this kid.

Saturday, April 19, 2014


I got to sweat today!  And for a change, it wasn't because I holding down my screaming baby for a medical procedure.  I worked out!  After having to take a break during Megatron's struggles, I've been very anxious to get back out there.  My pants were looking forward to it too!  Four months of hospital food didn't do me any favors getting rid of the baby weight that's for sure.

Today I dragged Megatron out to the trail to meet my training group.  I was loving the sunshine, the outdoors, the friendly faces, the smell of sweat, EVERYTHING, while Megatron sat in his stroller giving everyone the stink eye.  Luckily he fell asleep once we started cruising so he wasn't glaring at me for the entire workout.

For 45 minutes I waddled, walked and ran.  It wasn't as hard as I thought it would be but I have a lot of work to do to even get back to where I was in December.  Hopefully the weather is kind and Megatron's health continues to improve so I can start working out even when The Pilot is working so I can bring Megatron along.  I'm hoping he learns to love the BOB!  Right now he's still in his car seat attached to the stroller because he isn't yet sitting up on his own and I don't think he has enough body control to sit in the seat of the stroller.  We both have work to do!