No excuses, not sorry and some pictures

The Disney 1/2 marathon is in two weeks.  Say what??  Yeah. Training.  Sigh.  I will say that only doing the long workouts and nothing in between is not advisable.  But that is as good as it has been this go around.  While it is slightly frustrating, I've accepted that that is where my life is right in this moment.  I can't change it so I'm going with it.  Luckily I signed up for this race with no expectations.  I knew a PR wasn't reasonable.  Hell, it might be a personal worst and I'll be ok with that.  I did sign up for this race knowing I needed a goal to keep me moving post-baby.  I knew I needed to force myself to make time for training, and thus make time for myself during the stress that has been my life.    I also signed up for this race with one of my oldest and bestest friends in the world.  This will be our first race together and I cannot wait for our 48-hour vacation in Orlando. :)

I did get in 8 miles last weekend.  The winds were gusting at 25 mph + when I woke up Sunday morning.  I tried to bail but luckily my friend Lisa suggested we try a different trail, one that is much more protected from the elements by lots of trees.  And I'm so glad she did!  Granted, I hate the park we went to because of the hills, but she was right, there was hardly any wind.  I even ditched my jacket on the second lap and ran in short sleeves.  In December!  In Ohio!  It was a Christmas miracle.

We randomly saw a herd...gaggle...flock...gang? of wild turkeys.  Weird.

We had a nice time walking, running, shuffling, catching up, venting, gossiping.  You know, things women do best.  And boy did I feel better once we were done with 8 miles.  Not just physically but emotionally as well.  It's been awhile since I've had any "girl time."  I know I haven't been the greatest friend lately to anyone really but I'm not even going to apologize for that.  I'm doing the best I can just to survive these days.  The priorities are always Megatron, myself, The Pilot and my immediate family.  Not always in that order either and sometimes still one or more will get neglected.  Anything outside of that is not just a challenge but is like climbing Mount Everest.  I'm not going to beat myself up over that.  I do my best and that's all I can do.  Training suffers but I file that under taking care of myself and I am very much aware that taking care of myself is incredibly important when it comes to "survival" so I'm still doing my best to make it happen, no matter how sporadic.

Speaking of survival...we made it through Christmas!  hehe  Megatron's first Christmas was fun.  He doesn't have a clue as to what is going on yet so there wasn't any pressure.  I wrapped one gift for him and stuck a few other "needs" under the tree.  Baby socks and formula?  Best gifts ever. 

Check out that cute Santa butt! (Note to Megatron: I don't EVER want to see your butt on the internet once you are past the age of say...two.  See my 21 lessons.)

Opening the one wrapped gift I gave him....instantly started trying to eat the wrapping paper.  Hopefully it was non-toxic...

Megatron's extended family was very kind and sent him gifts from across two states.  And the toys were much needed as he is just starting to grab and interact with things and we didn't have many toys for him yet.  What was not needed?  Zip ties and having my hands covered in cuts and scrapes from trying to get those d*&@ toys out of their packaging.  I'm sure it's just going to get worse as the toys get bigger.

Hey Megatron, care for a spot of tea?

OK, that is all of my rambling for today. I hope you all enjoyed the holidays!

5k plus 8

I participated in my first post-baby race on Saturday!  Ok, so I didn't really race it...I didn't even enter as a timed competitor (it was cheaper to enter and not get a timing chip) but it was technically a 5k race so I'm going with the title of first post-baby race.  It was the local Jingle Bell Run to benefit the Arthritis Foundation.  I did it last year and had a blast so this year The Pilot joined me.  We were going to bring Megatron in the jog stroller but a winter storm rolled in the day before and it was snowy and COLD!  Not exactly the best conditions for a 4.5 month old.  He stayed warm and snuggly at home with grandma while The Pilot and I froze our baguettes off (Christmas Vacation anyone??).  Best part?  We were on the largest friends and family team again and were the top fundraising team, Jon's Jinglers.  Even more fun?  Last year, Jon's wife was "just" a former TNT teammate.  This year?  She's one of Megatron's team of doctors.  I can't even tell you how many tears I have shed with that woman in the last 5 months! HUGS!

The roads were slushy and both the Pilot and I were getting over colds so we opted to walk rather than run and of it.  And really, it was more of a "fun run" than a race.  Almost everyone was out there to have fun and support a wonderful cause.  So that's what we did!  We jingled our way through 3.1 miles and had fun in the process.  Plus, I'm not going to lie, it was nice to get out and do something "normal" with my husband...and without Megatron. 

Last year I did the race as a "warm up" for my long workout and did a zillion miles after the race.  I didn't have time to do that this year so on Sunday morning I ventured out on my own.  This time, it was The Pilot and Megatron who stayed all warm and snuggly at home.  What is wrong with me?  It was another COLD morning.

Just me and the geese...I should have known I was a little crazy for attempting the trail....

I was dressed in a million layers but I still hit the trail.  And that statement was almost literal when I arrived to find that the trail was plowed but was covered in ice.  It was a miracle I didn't actually "hit the trail."  Determined, I forged ahead.  The trail was really sketchy so 1.5 miles in, I decided to try a local park that has a trail around the perimeter.  It was mostly clear so that was good.  The downside is the loop is only .75 mile.  After 3 laps, I was bored so I decided to head back towards the car, thinking maybe I would just run/walk the side streets at the trail head.  Well, about 100 feet into the 1.5 mile trek back to the parking lot, it started to snow.

Now I'm one of those winter weirdos that loves snow.  I don't mind training in it.  The trouble was this wasn't the soft, fluffy stuff.  It was mostly frozen and it HURT when it hit my face.  By the time I got back to the car, my face hurt.  In I went!  I hopped in the car and went home.  I stripped off a million layers of clothes, said hello to my still pajama-clad boys and went to the basement to dust off the treadmill. I wish I could say I was exaggeratting.  I haven't used the treadmill since before Megatron was born and it actually had cob webs on it.  :(  Once it was dusted off though, I revved up that ancient machine and knocked out a couple more miles.

I got some pretty cute visitors while I was down in the dungeon!

When it was all said and done, 5.3 miles outside and 2.7 miles inside, I tackled my furthest distance since January. It felt great! I'm still nervous about the race next month because my pace is still pretty off and I'm just not getting in the volume that I normally do but this is as good as it is going to get right now.  It might not be a lot in my eyes but at least I'm not giving up completely!  I will reclaim my pre-baby body!

Slow down!

Time just doesn't seem to ever slow down these days (well, except when it is the middle of the night and Megatron is taking his sweet time drinking/sleeping through his bottle).  I now understand why parents frequently say they wish they could stop time so their kids would stay small forever.  While I feel that way most days, I'm also thankful that Megatron is getting bigger and stronger each day.  It also means he's a lot more fun to hang out with these days since he smiles and coos at us now.  :)

It's been another rough month on the personal front but Megatron's health is stable and that is a huge thing to be thankful for right now.  I missed posting this yesterday, National Biliary Atresia Awareness Day, so here it is a day late.  The goal was to make at least one person aware of biliary atresia and the importance of organ donation.

The only cure for biliary atresia, the liver disease Megatron has, is a liver transplant.  A new liver will save his life someday.  It is as simple as that.  And as his mama, I would do anything to "fix" my little man.  The only thing I can do though is encourage every one I know to become a registered organ donor.  You can find out how to register in your state by visiting Donate Life America's web site.

OK, stepping off my soap box now.  :)  On the training front, with just over a month until my next 1/2 marathon, training is still a bit sporadic.  I got in 7 miles on Thanksgiving day though.  That was the longest I've gone since the 1/2 marathon in January when I was still in my first trimester with Megatron.  And after such a lack of training, those 7 miles were felt for a couple days!  I'll get get through that race somehow!

10 and 10: The Comeback

Whether I'm ready or not, my distance racing comeback is happening.  I'm officially registered for my 10th half marathon.  And it is two months from now.  Yeah.  Those who know me or follow this blog will know exactly which race I'm registered for too.  The Walt Disney World 1/2 marathon.  It will be my 10th year at the race either racing or coaching.  10 years!  That is mind boggling to me.  It doesn't feel like I've been slowly waddling my way through races for 10 years.

When I made the decision to do the 1/2 marathon this past January, I knew there was a good chance I'd be pregnant during the race (I ended up being 9 weeks prego on race day).  I even told The Pilot that if I raced in 2013 that I would HAVE to race in 2014.  I couldn't end my string of Disney races after 9 years.  I had to commit for  an even 10 and then let go of the Disney races (that sh!$ is expensive!).  Type A/OCD much??

And so here we are.  I'm 3.5 months postpartum and trying to figure out how to manage training with work, maintaining a household/home life and taking care of my special little Megatron.  Yeah, not as easy as I thought.  When I was still pregnant, I figured once baby arrived, I'd be able to run on the treadmill after the baby was down for the night.  Know what happens when the baby goes down for the night?  I go down for the night.  As soon as that baby's eyes are closed, I race to finish getting ready for the next morning and then I go to bed.  I'm so darn tired!

While I'm still trying to figure out the weekday workouts, I am slowly getting back into a weekend routine.  Two weeks ago I did a 4 mile walk with Megatron in the run stroller.  I was able to get up to Disney's minimum pace despite pushing all the extra weight so that was reassuring.

This past weekend, I snuck (which isn't a word apparently.  But "I sneaked" doesn't sound right.) out of the house while The Pilot and Megatron were still sleeping and met up with some friends.  I was obviously out of practice though.  While I did charge my Garmin the night before, I didn't check the forecast.  I threw on some clothes and was out the door.  Half way to the trail it started to rain.  Son of a!  I had no rain gear with me.  Not even a hat.  I did have a hooded sweatshirt that was intended to put on AFTER the run so I could run an errand before going back home.  On it went!  I was about to run/walk 5 miles in the rain with a cotton sweatshirt.  Ick.

It happened though!  I did a run/walk combination and finished 5 miles in just over an hour.  Not bad considering it's been MONTHS since I've gone that far and MONTHS since I've run at all.  Having friends to chat with (or listed too when I was too winded to converse) made it go by so quickly.  It was also nice to not have to push the stroller and be paranoid that the beast was going to wake up screaming 2.5 miles from the house.  :)  And for the record, I should have skipped the sweatshirt.  It stopped raining about .5 mile into the run and then I was just hot.  And it was heavy from that .5 mile it did get rained on.  Oh well.  I was just happy to get out there and try to feel normal again!

I at least had the sense to know I would basically be starting from scratch in terms of fitness so I have developed a "beginner" training plan despite this being my 10th half marathon.  That means I only have 5 miles on the schedule again this weekend.  I'm not positive when/where I will make it happen yet but it will happen!  I just need to figure out how to get in at least one weekday walk/run or this race is going to be a train wreck.  Just don't tell my BFF who is going to do the race with me.  I bet she didn't sign up to be the last one to finish!  :P

What a strange trip its been

Last December I presented The Pilot with a gift, though I didn't share that story with the blog world until this past February.  So in the last 10  months we went from the excitement of finding out Megatron was on his way, to having a 3-month-old Megatron squirming in our arms.  It hasn't been the journey we expected but it's been a journey nonetheless and it's true....there is a new chief pilot in our lives!  That 11-pound bucket of goo is certainly in charge now!

It Takes A Village

I believe in hand-written thank you cards.  Call me old school but I think it is good etiquette and just the nice thing to do when someone gives you a gift or does something nice.  Plus, getting snail mail is fun and stands out from the mass amounts of email that people receive these days.

Having said that though, it has been impossible to keep up with the thank you notes between the chaos of our challenges over the last 3 months and also because of the outpouring of support we have received.  I did my "Thankful Thursday" post but we have even more people to thank since then!

My parents.  You have been my rock since the day I came into this world.  I don't even have the words to describe what it has meant to have you by my side through by far the most traumatic time of my life.  Mom, I might be in my thirties now but I don't think I'll ever outgrow needing you especially when times get tough. You are always there, even when it's 5 am and I'm alone at Children's Hospital, 100% overwhelmed and send you an SOS text. Dad, watching you be a grandpa warms my heart.

My brother, sister-in-law and your amazing kids.  You are all always my comic relief even during some dark times.  Brent, having you in the waiting room during Megatron's surgery was a wonderful distraction.  Dropping everything...including work, to make sure Megatron and I got back down to the hospital when The Pilot was away meant the world to me.  Lia, he was only able to do those things because you were juggling not only the kids but also another crisis an hour away.  Despite your dad being in the hospital, you somehow still managed to be there for us too.  And my sweet niece and nephew.  Boy I love you two crazy kids.  The cards you made for Megatron cheered us all up and your hugs always make me feel better.

My in-laws.  You've made the 2-hour drive to town multiple times at the drop of a hat to help us out. You've helped us keep information flowing to the extended family.  Beth, you even whipped out a diagram of the liver when a radiologist was trying to explain a procedure and draw a little picture at the top of a consent form.  Always prepared!  Plus, your homemade cookies also go a long ways when it comes to comforting the soul!  Steve, seeing Megatron smile at you is probably the cutest thing ever.

Lisa.  What haven't you done?  You have kept not just me and The Pilot fed with your amazing food but you've also jumped in to make sure our cats haven't missed a meal either!  You even bought more cat food while we were stuck in the hospital unexpectedly!  You coordinated a Meal Train to help other people take care of us.  You were there when I got bad news about Megatron's post-op lab work and stepped in and told me what to do when my brain was completely scrambled.  You held my sweet boy and even changed his diaper while I ran to pick up medications for him.  I will never be able to thank you enough!

Kelly, Meg, Ann, Mary, Jenni, Kami, Marcia, Julie Sarah and Jim.  You kept us fed with homemade meals, pizza delivery, grocery gift cards, hospital care bags and gift cards to use in the hospital cafeteria.  You also kept the kind words coming which helped more than you will ever know.

Lindsay, Ann, Parker, Mike, Caryl, Cara, Derek, Melissa and Lisa for just showing up at the hospital.  Smiling faces made the hospital seem a lot less like a prison!

Melissa.  Marathoning brought us together.  Your humor, foul mouth, realistic attitude and calm demeanor made you a shoe-in to be Megatron's pediatrician.  You have acted as "translator" when I have had selective hearing when all the specialist called me using lots of big, scary words.  You showed up at the hospital late at night to explain the PICU.  You've answered every frantic call and text.  You've answered every random call and text even though I told you I wouldn't be "that parent."  You even called every CVS in a 15-mile radius when we couldn't find formula.  You begged the GI specialist to take on Megatron despite her full case-load just because she was the "GI goddess" you knew Megatron needed.    We also have to thank your husband (and his "jinglers") and your children for their patience because I know we have pulled you away from them more than once.

Katy, Megan and everyone at the pediatric office.  Thank you for realizing you aren't just taking care of the patients but the parents too.  You are amazing at what you do.  Katy, not only do you take wonderful care of Megatron, but you also inspire me too.  Next stop, 1/2 marathon training baby! ;) I WILL get back out there.

Julie, Lindsay, Lauren, Jessie and Lezlie.  The best girlfriends I could have ever asked for.  You stepped up with encouragement, humor, baby clothes out the wazoo, baby gear, a breast pump that ended up being a life-saver when my preemie baby wouldn't latch, an "edible arrangement" and a storybook that made me tear up and will surely become one of Megatron's favorites (it's already mine!).  I love you all as if you were sisters.

Steve, Sharon, Matt, Patty, Penny, Don, Rick, Sharon, Ron and Dorie for the various support.  Because of you, our house didn't fall apart and Megatron's bum was always diapered (despite us being unprepared to use disposable diapers for so long!)and clothed.  Some of you were even on standby for when my parents weren't available.  I am so thankful to have grown up with such amazing role models.  I always have and always will consider you all my "extra parents."

My co-workers.  Love, support, prayers, GIANT cards and flowers were coming fast and furious from all over Central Ohio.  Your continued support is going to help me navigate the world of being a working mom so thank you in advance for that!

Robyn, Sue, Jennifer, Amy and Ann for helping me put things, post-Megatron's diagnosis, into perspective and for providing encouragement.  We have to be tough mama bears to shoulder the stress when it comes to our extra special babies.

Marcy, Mandi, Rosemary and Shelly.  You may not even realize how much a Vera Bradly bag, cute little newborn cloth diapers, a "rainforest" and a product recommendation have made our lives just a little easier.

Everyone on social media who have sent encouragement, prayers and lots and lots of "mojo."  There have been a lot of hard days but reading (and re-reading) your comments has helped me remember that tomorrow is always a fresh start.

I know in my sleep-deprived, emotionally raw state, I have forgotten someone.  If I have, I am deeply sorry.  Trust me, your kindness didn't go unnoticed at the time.

I Have A Confession

While my blog in no way represents all aspects of my life and I'm not a completely open book, I feel like I need to come clean.  Mostly for selfish reasons...I need to let this out.

I've been journaling since I was a kid and writing has always been an outlet for me.  When I'm having a hard time processing a heavy subject, it's always helped to write about it.  Sometimes if I can't seem to let something go, I'll write it down and it helps me move on.  I'm hoping this blog post does that for me.  I've never in my life had something weigh as heavily on my heart as this.

I've blogged about Megatron's surgery and how it's not fair but I haven't really gone into detail.  At first it was because it felt like it wasn't important to share the details with the masses (or with strangers).  It felt like if I shared all the details it would get everyone else all worked up.  It was about self-preservation too.  I wasn't ready to deal with the facts.  I wasn't ready to deal with the flood of emotions that would come once I accepted our reality.  I wasn't ready for everyone to really know what was going on for fear that we'd be getting a barrage of people asking questions, wanting to talk about it and know more.  I wasn't ready to talk about it more.  I still don't think I am but after avoiding people for the past month and realizing that this isn't going to go away, it feels like the right time to put it all out there.

It wasn't until after the surgeon got in and looked around inside Megatron that we officially knew his diagnosis, but we had a strong indication prior to the surgery based on the scans that were done.  After 6 1/2 hours of surgery, the surgeon confirmed Megatron has biliary atresia.  Once he confirmed that was in fact the condition, the surgeon performed the Kasai procedure.  Basically, Megatron was born without a common bile duct.  The bile duct is how bile flows out of the liver into the intestines to help with digestion.  Without it, bile backs up in the liver, which will eventually cause the liver to fail.  The Kasai procedure creates a passageway for the bile.  As The Pilot describes it, the surgeon "hot wired" Megatron's intestines directly to his liver, hopefully creating the needed passageway for bile to flow through.

Here's where it gets difficult for me.  The Kasai procedure is not a cure.  The procedure is buying Megatron time to grow and get stronger.  Only about 25-30% of kids born with this condition make it to adulthood with their own liver.  That means 70-75% need a liver transplant.  Sitting in the Children's Hospital GI clinic, holding my then 5-week-old baby, hearing he might need a liver transplant was the worst day of my life.  That was nearly 2 months ago and I feel like I'm only just now grasping what that means.  I wouldn't say I have accepted it yet.  Quite the opposite actually.  I'm more upset now than I was then.  I didn't want to believe it.  I went into the surgery thinking that maybe, just maybe, they'd find something else, fix it and we'd move on.  But that wasn't to be.

My sweet, tiny boy has liver disease.  Despite having surgery at 8 weeks old, he is not "fixed."  There is a greater chance that he will need a liver transplant than not..  We're going to face infections and other complications.  We're going to spend a lot of time at the GI Clinic at Children's.  He is currently taking 6 medications.  While that may go down a few once he's healed from surgery, he will take at least 2 medications for the rest of his life.  He may always have trouble absorbing vitamins and nutrients.  While he is growing well right now, he will be watched closely because he could easily stop growing due to not absorbing those vitamins and nutrients.

One of the first things that came to mind when we first heard the word transplant thrown out was "Oh my god.  He's going to go on a transplant list and we will wait forever for a little baby liver to become available."  Since they caught Megatron's biliary atresia so early, there is no reason to think the Kasai won't be a success.  He didn't have substantial liver damage yet (not all babies are as lucky as we are to have an amazing pediatrician and a world-class Children's Hospital that were persistent in watching his jaundice so carefully).  I still had to ask the question though.  Where would he get a liver if he needed one?  His GI doctor explained that more often than not it would come from an adult who was declared brain dead.  They would cut off a small portion of the liver to give to a baby and the rest would go to a small adult.  The liver is the only organ in the body that can regenerate itself, so I guess it isn't a big deal if someone is only getting a portion of a liver.  Sometimes, they will do a living donor.  A family member or other match can have part of their liver cut off and given to someone else.  The doctor did explain though that they don't like to have parents be the donor because then the remaining parent has two patients to worry about.  There is twice the risk.  It sounds like that wouldn't be an option for us anyway since Megatron's blood type doesn't match mine or The Pilot's (the poor kid had to get a rare blood type based on the recessive parts of me and The Pilot's blood types!).

Like I mentioned though, the Kasai procedure will hopefully buy him time.  The doctors have told us that the older, larger, and stronger Megatron is, the higher his chances are for having a successful transplant if he does need one sometime in the future.

Of course Megatron could be in that 25-30% that doesn't need a transplant.  He might be like a boy a nurse in the GI clinic told me about.  He's had the same GI doctor, and the same surgeon who performed the Kasai procedure on him when he was an infant.  He's now 21 years old, 6'2", still has his liver and is now transferring to an adult doctor.  He has "aged out" of Children's Hospital.  I've focused on that a lot.  That could be Megatron (though I highly doubt he'll be 6'2" considering I'm 5'3" and the The Pilot is 5'9").  There isn't any indication right now that that won't be our path.  The odds are against us but it could happen.  That's all I am holding onto right now....

...well, that, and the fact that this sweet boy is as cute as can be.  He doesn't look sick.  He hardly looks jaundice anymore.  He doesn't have a big, distended, hard belly like some babies with this condition have.  He's doing what normal babies his age (well, his adjusted age, since he was 5 weeks early) should do.  He's starting to track with his eyes.  He found his hands and loves to suck on his fingers.  He is smiling.  He's just our sweet boy that we are going to love no matter what.  We joke that he's our defective baby, but he's still ours.  We're going to stick to him like glue and navigate the world of biliary atresia together.  While this diagnosis sucks and I would give anything to fix him, we're going to keep plugging away.  We're going to do the best we can to take care of him.  We've already been lucky enough to have some of the best doctors in the world looking after him.  Like I mentioned in a previous post, we're just going to keep moving forward.

Having said that though, there have been and will continue to be a lot of tears, and lot of sleepless nights spent worrying more than the average new parent.  Bear with me if you see me and I start to cry when asked about Megatron.  Bear with me if I don't seem like my normal, organized self.  Bear with me if I am forgetful or crabby from lack of sleep.  Bear with me if I have no patience for petty problems anymore.  Maybe people will just chalk it up to me being a new parent...though I think this may last as long as this sweet boy and I are on this Earth together. 

After a particularly rough day, it was The Pilot who suggested I write it all down/blog about it.  He knew I would probably feel better if I put it all into words.  He had found it helpful to process it all by talking about it.  He had to fill in some co-workers and by telling the story a couple times, it got easier each time.  Since I've been on maternity leave for the last 11 weeks (just one more week left!), I've been a little more isolated.  I haven't had to tell the story as many times and its still very raw for me.  I do feel a little better getting it all out and I hope that by sharing it like this that more people will know what's going on with us.  It might help them know a little more about Megatron's condition and why we may have been a bit distant lately.  And to be honest, I'm somewhat hoping that the more I share on here, the less questions I may get in person.  Because I still can't guarantee that I won't cry or get emotional when asked.  I'm sure with time that will get easier.