A Different Kind of Race Report

I was really hoping that I'd be posting my Disney 1/2 marathon race report by now.  But I'm not because I didn't make it to Orlando.  I didn't get to race.  Instead I was sitting in a hospital classroom learning how to use a feeding tube and pump and how to care for a Broviac catheter when I was supposed to be on a plane to Orlando.  The last four weeks have taken a very scary turn and I am now in the midst of a different kind of marathon.  This is the abbreviated version (which is admittedly still quite long)...

On New Years Eve, which was also my last day of work, The Pilot was working so my mom and I went out to dinner with Megatron in tow.  During dinner he seemed a little warm so when I got home I checked his temp.  100 under the arm.  Not that high in a baby without liver disease but any fever is bad news for Megatron.  I called the pediatrician.  Who called the GI doctor.  Who said to go to the emergency department at Children's Hospital.  And that turned into a month long ordeal.

 Awwww man....

He was admitted for 4 days and sent home on oral antibiotics for an unknown virus.  Two days after discharge, at a follow up with the pediatrician, the fever returned but this time his belly was really distended.  Another call to the GI doctor and another order to go to the ED.  That led to 5 more days in the hospital with fluid in his abdomen (ascites), which then got infected.  Megatron went under general anesthesia for the 3rd time.  This time they placed a Broviac catheter.  While scary, it is a good thing.  The catheter can be used to administer medications as well as draw blood from.  And since Megatron has a lot of lab work done, this means less sweat and tears from me, The Pilot and Megatron, because they don't have to poke him so much.  They discharged Megatron and ordered 21 days of IV antibiotics, which The Pilot and I were to administer 3 times a day via the Broviac.  He was also sent home with a feeding tube (NG tube).  Even though he eats like a champ, his gimpy liver doesn't absorb vitamins and his nutrition and vitamin levels had tanked.  The feeding tube is used for 10 hours overnight with a high calorie formula that is already broken down so he can absorb what he needs to more easily.

We went home and things seemed to settle down.  I was thanking my lucky stars I wasn't working as we tried to adjust to the new 3-times a day IV antibiotic schedule as well as the nighttime tube feeds.  Just as it felt like we got the hang of it, everything changed.  A week after the last discharge, my in-laws were watching Megatron while I was helping my mom unpack (Yes, let's throw in more stress with a move) and The Pilot was at work.  Mid-morning they called to tell me that Megatron threw up and there was some black specks in it.  A call to the pediatrician's office and then to the GI specialist and everyone agreed we should sit tight.  Backing up a little, about 6 weeks ago, the GI doctor warned us that esophogeal bleeding was a common complication of biliary atresia, and can be very difficult to stop.  Any sign of blood in vomit or a diaper warrants a 911 call.  Based on what my in-laws described, it wasn't bright red, indicating it was old blood.  A couple hours later though, he vomited again.  I was already on my way home and en route was able to have the GI doctor paged.  By the time I got home, the doctor called to tell us to call an ambulance to get him down to Children's.  Sigh.  So we added "first ambulance ride" to not just Megatron's baby book but mine also.

He was admitted to the PICU for observation while they used medicine to stop any other bleeding that may have still been active.  Throughout this, his lab work started to look worse.  His liver function was looking worse, he was losing weight and he turned a horrible shade of yellow.  It was heartbreaking to watch my sweet, somewhat healthy, baby deteriorate like that.  It was time to speed up the transplant evaluation process.

 On Monday, January 20, Megatron and I added another first to our baby books.  We were flown in a helicopter from Columbus to Pittsburgh.  While Megatron was stable, they wanted to get him to Pittsburgh sooner rather than later.  He was getting a little better but was still pretty sick.  We spent the next 5 days learning more than any parent should ever have to learn about liver transplants.  Megatron had more firsts:  an EKG, chest x-ray, CT scan and an echo-cardiogram as well as an abdominal ultrasound (which he's a pro at by now.  I've lost track of how many he has had.)  Megatron continued to improve while The Pilot and I were put through the ringer.  We met with social workers, finance people, a transplant psychologist, transplant surgeons, heptalogists (liver specialist), a transplant nurse and a transplant coordinator.  Not only was Megatron being evaluated but we were as well.  They wanted to make sure we were competent enough to take care of Megatron post-translant.

I guess we fooled them because on Friday, January 24, Megatron was added to the liver transplant list.  He isn't at the bottom but he isn't in the critical category.  He's hanging out roughly in the middle unless his health status changes.  So now we are in the biggest wait of our lives.  Every time the phone rings, I nearly jump out of my skin because any call could be "the call."  Once a donor is available, we will get a call to hit the road to get to Pittsburgh.  We now have "transplant suitcases" packed and ready.  We have been trying to make arrangements for our cats and our house to be taken care of in our absence.  The Pilot has been working with his employer to figure out how to work, yet be able to take time off without much notice.  The logistics are already making my head spin.  I will stay in Pittsburgh with Megatron for 6-8 weeks once his new liver is found.  How do you prepare to be away from home for that long...without any notice?  I have no idea.  I suppose that part will work itself out.

So this marathon....  It's a race to hurry up and wait.  I'm trapped in mile 26 and I have to keep crawling through it over and over.  I want so badly for the race to be over but that isn't an option.  I just have to desperately try to put one foot in front of the other.  People say they don't know how I do it or that they are amazed at my strength.  I appreciate the kind words but really, what choice do I have?  There is no option other than to take care of this baby in the best way that I know how.  And when I don't know how, there is an army of medical professionals as well as loved ones to step in to help.

So how's that for a report?  Certainly not the one I wanted to write.  My BFF still went and did the Disney 1/2 marathon.  She bought me a bracelet that says "Be Brave" on it and she carried it during the race and sent it to me after.  We are considering it a relay.  It's looking like 2014 won't be my year to race on the roads.  Instead me and my family are in a race to find this sweet boy a new liver.

Even baby hospital gowns are a little breezy on the backside!

Update:  I wrote this last Thursday and on Friday morning, that last hospitalization with the GI bleed replayed just like Groundhog Day, which is today coincidentally.  On Friday morning, Megatron had blood in his feeding tube, indicating yet another GI bleed.  Another call to 911, another ambulance ride to Children's and we are back in the hospital as I type.  Hopefully an helicopter ride to Pittsburgh isn't involved this time around and they can patch him up again so we can go home to wait.  At least we got a trial run with our already packed "transplant suitcases."  Both The Pilot and I got to make sure we have the essentials packed (I almost did with the exception of a toothbrush, which my mom brought to me) so that when it's really "go" time, we are ready.

My World Sure Weighs A Lot

I think I'm at a point again where I just need to let it out.  Maybe by letting it out, I can try to let some of it go.  I did feel better the last time I spilled my guts on the blog back when I had a "confession."  There have a been a lot of days lately where I feel like the Universe is conspiring against me and my family but then something will slap me in the face and remind me that it can always be worse.  Something else that slaps me in the face daily?  The biggest bright spot I could possibly imagine.

So when then weight of the world seems to be crushing me, this little face is such a wonderful respite.  I don't think it is possible for a baby to be any cuter.  Yes, every parent says that.  :)

I have struggled tremendously since Megatron was born.  There hasn't been a shortage of drama in his 5 short months.  Death, divorce, illness and career stress have all reared their ugly head since his birth.  Through it all though, this kid just keeps growing and hitting milestones.  And I can't even begin to describe how thankful I am that he is so small and doesn't yet realize just how much we've been through since he was born.  That makes it all a little easier but there hasn't been a single day go by since he was born that I haven't cried. Sometimes I just let a few tears spill when I'm alone on my commute to work (pretty much the only time I'm alone these days).  Sometimes the crushing weight of the stress sends me to full-on sobs.

I try so so hard to not cry in front of this precious face because to him, there is no cruelty or sadness in this world.  His only anger comes from an empty belly or a full diaper.  And I want to keep it that way for as long as I possibly can.  He's going to have one hell of a rough road so I will do my best to protect him for as long as I can.

It's hard to put on a happy face around him though when the stress of the real world just won't let up.  There are big changes coming our way this week....

After a 12-week maternity leave, I was actually looking forward to returning to work.  I love what I do and after such a chaotic maternity leave between Megatron's diagnosis and surgery, I was ready to try to get back into something of a routine.  My job has always required travel but we were going to try to make it work.  Then my job situation changed and was going to require more travel.  If The Pilot was home every night, we would have still made it work.  But he isn't home every night.  There are 2, 3 and sometime 4 days at a time where I am on my own with Megatron.  If I was going to be traveling too, we would have had to ship Megatron off with family.  Again, we probably could have made it work if Megatron was a normal, healthy baby.  But he's not.  He doesn't travel light when you consider his 6 medications and that he needs more daily bottles and diapers than the average kid, at least from what we know (he doesn't absorb food well so he eats A LOT and thus also has a lot of diapers).

So where does that leave the work situation?  After an agonizing couple of weeks of trying to work with my employer to come up with an alternative, The Pilot and I made the decision for me to quit my job.  In early 2010, when I first met The Pilot I never imagined being a mom, period.  So the thought of being a stay-at-home mom is terrifying.  Yet, the Universe confirmed it was the right decision less than 24 hours after I gave notice to my employer.

The day after my employer accepted my resignation, I received a call from Megatron's GI doctor regarding the results of a recent ultrasound and dopler of his abdomen.  His spleen continues to enlarge.  While his lab work continues to look better, the enlarged spleen is a sign that his gimpy liver is still struggling.  The GI doctor ordered more labs for this week and will check out his spleen again at the end of January but suggested we start learning more about our options for a liver transplant.  Her theory is that if we learn the options before Megatron's health starts to decline, we will already be more informed and prepared for the next steps.  She had an excellent point that it is hard to retain any information when you are distraught over a critically ill child.  I already have enough trouble understanding some of the things she tells me and often end up calling the pediatrician to have her repeat everything in layman's terms.

My last day of work will be tomorrow.  We switch insurance carriers January 1 (thank goodness The Pilot held our insurance!).  Besides caring for Megatron, it will become my full-time job to work with the insurance company to start the process of meeting transplant teams.  Unfortunately they don't do liver transplants in Columbus so we will be headed to either Pittsburgh or Cincinnati.  I'm not sure yet how it will work but I am assuming we will meet with the transplant team at one, if not both centers and go from there.  When I say it is a full time job is not an exaggeration.  I have spent HOURS on the phone with insurance carriers regarding Megatron's care.  I can only imagine the transplant process will be even more time consuming.

Part of me is feeling that there will be some relief when I'm no longer working.  I'll be able to devote more time to not only Megatron but to my marriage, my house, my family, myself (things that have all been neglected at some point over the last 5 months).  The other part of me is terrified because I do love my job and still have career goals and I'm scared that I won't be as fulfilled.  I know I will cherish the time I get to spend with Megatron but I fear I'll miss my detail and deadline-driven career.  In fact, I know I will, but my hope is that I will adapt and learn new ways to fulfill that side of me.  Plus, I don't see this as a permanent solution.  I think once we get this sweet baby back on track and we get some of the other chaos in our lives under control, I will be able to look at other career options (even if it is part-time work).

Besides, if Megatron does end up needing a liver transplant sooner, rather than later, I don't know how I would manage to keep working.  We will most likely be in either Pittsburgh or Cincinnati for weeks.  The Pilot will need to keep working obviously so I will be living in Megatron's hospital room during that time.  He will need my full attention and I don't know how I would be able to keep working, even remotely.  It's one of those things that while the decision was scary and painful to make, it is already proving to be the right decision for right now.

Career aspirations aside though, I absolutely know I will never ever regret spending time with Megatron.  From the day I unexpectedly welcomed Megatron into this world, I have learned to do my best to not take anything for granted.  Life especially.  I try every single day to slow down and enjoy that sweet baby.  I don't want to rush these baby days because we won't ever get them back.  I don't want to wish away the middle of the night feedings and never ending diapers because he won't be small forever.   And no matter what happens with Megatron and his liver, I don't want to ever look back and regret not spending more time with him.  By quitting my job to care for him, I will just have that much extra time to enjoy these days.

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!