Saturday, January 3, 2015

A Year At "Home"

I wrote this post for our family blog but with so many year end recaps floating around, I thought I would share here what our year looked like.  It wasn't a year of juggling work, a baby and training.  It was a year of survival, of learning to administer IV meds and tube feedings at home and hoping for a new liver for our baby.

One year ago (on Decemeber 31), I left my job with every intention of finding something with a more flexible schedule.  We also knew something might be up with Megatron when I gave my notice because his spleen continued to swell. Within hours of leaving my office for the last time, Megatron was was admitted to the hospital.  And that kicked off the year of the hardest job I've ever had: "stay at home mom to a medically complex baby."  So much happened early in the year that I hardly remember the details.  It was a couple days in the hospital, a couple days out, then back in.  It felt like this happened over and over and over forever but it was really "only" about two months.  It wasn't until I went back through my 2014 planner to transfer dates into my 2015 planner that I was able to grasp just how much we went through this year...and this was just for Megatron.

We drove over 5000 miles for treatment.

We attended at least 89 medical appointments/procedures.

We spent 50+ days in the hospital.

We dealt with nine weeks of 3-5 times daily vomit.

We spent a total of eight weeks in Pittsburgh.

There were two calls to 911 and two ambulance rides.

Don't forget the two helicopter rides.

There were two major surgeries.

Most importantly though? One new liver.

I didn't earn an income and yes, that was hard not just on the bank account but it was also emotionally hard.  I never wanted to be a stay at home mom.  But that's how it worked out and I'm so thankful it did.  Can you imagine trying to manage everything above while also working?! Ha!

Our sweet boy, despite the recent challenges, is thriving.  We've been able to devote our attention to not just his health and healing from two surgeries but also to making sure he caught up/stayed on track developmentally. You would never know he spent 50+ days laying on his back in a hospital crib, either too sick or healing from surgery, to do the much needed tummy time.  You would never know he was cut open from limb to limb...twice...because we worked hard in physical therapy to teach him to overcome weakness, underdeveloped neck and back muscles, and abdominal muscles that were severed.   You would never know any of it by looking at him.

I'm sure the last 17 months aged the rest of us by a decade and it shows on our faces but it was worth it.  The drained bank account was worth it.  It was worth it because now we, and the rest of the world, will have the joy of getting to know this sweet boy.

I have no expectations for 2015.  Whatever the year throws at us, we will just keep taking steps forward.  Even if we take some backwards steps from time to time, the goal is cumulative steps forward.

Sunday, December 28, 2014

The Fun Never Stops!

The blog fell off my radar obviously.  I've been overwhelmed at where to start since so much time has passed and so much has been going on.   After Megatron's surgery at the beginning of October, things have been challenging.  The surgery itself went well, but the days that followed were hard.  Really hard.  It was a very painful recovery for our sweet boy.  Just like after his transplant, it took a lot of medication to keep him comfortable.  But even with narcotics and an epidural, it was really painful for him but also painful for my husband and I because there wasn't anything we could do. 
The afternoon after surgery....couldn't get comfortable.  He was also trying to pull out his IV and NG tube which is why his elbow was restrained.

He was more comfortable sitting up...with some help from The Pilot.  Megatron fell asleep like this!

After several days of him only wanting The Pilot, I finally got some baby cuddles.
Once we all survived several painful days though, he healed well from the surgery itself. It did take him a few days to regain his appetite and when he started eating after the surgery, he started vomiting.  Four to five times a day. Every day. For NINE weeks.  

At first we thought it was anesthesia related. Sometimes the gut is stunned and needs time to "wake up."  Then we thought his stomach was crowded from having his abdominal muscles sewn back together.  But the vomiting continued.  He had an upper GI done.  Then a gastric emptying study.  We added meds.  We added Pediasure. 

Let me go, I totally know how to work this machine!

Nuclear boy!  This was the same room we had the scan that ultimately led to his original liver disease diagnosis.  He was only a month old then though and slept through the entire scan.  This time?  He wanted to know exactly what was going on.

Nothing helped and after a exhausting and puke filled Thanksgiving weekend, Megatron had lost too much weight. He was admitted to the hospital and had a feeding (NG) tube placed in his nose to do continuous feeds to help him gain weight while the doctors hunted down the reason for the vomiting.
This is our first hospital stay with a toddler and not a baby so we visited the toy room to play.
We have had a feeding pump at home before (pre-transplant) so the hospital felt comfortable sending us home after an upper endoscopy and three days inpatient.  We had a new learning curve once we got home.  Megatron was hooked up to the feeding pump continuously and naturally this is when he decided to start walking.  We spent several days following him everywhere he went, carrying the pump and bag of formula.

One of us slept in his room every night because he kept rolling around and would get tangled up in the tubing.  Everyone was exhausted.  Between the lack of sleep, the piles and piles of laundry from all the vomiting, the worry and then the time in the hospital, we were all fried.

A couple days after being discharged, we got the results of the biopsies taken during the endoscopy. Everything at that time pointed towards food allergies.  Widespread food allergies.  We had to eliminate dairy, nuts, soy, wheat and egg.  We went into survival mode yet again.   What on earth do we feed this child?!  The formula going through the feeding tube was meeting his nutritional needs but the goal is to cut the tube feeds as soon as possible.  We didn't want him to forget his oral skills.

We went to the allergist and had a large skin prick test done.  They pricked his entire back and both arms with potential allergens.  That showed allergies to egg and peanut. So we can add back the other foods, right?  No. He's still showing some kind of reaction in his blood stream. And that has the doctors somewhat stumped. 
The second skin prick test this little dude has gone through.
But he had fun spinning the doctor's stool in the allergy clinic
And that's where we are right now.  He still has the feeding tube in place but we aren't using it. We are desperately trying to get him to drink the formula by mouth so we can have the tube taken out.  We have two appointments this coming week and we hope to have more answers. At least with his liver disease, we always knew what we were dealing with.  This latest challenge has too much unknown for my comfort level.

I will say that despite all that has been going on since October, our little man keeps smiling and doing normal toddler stuff.  At 17 months, he's all toddler boy: sticking his fingers in his nose and anywhere else they will fit, putting everything in his mouth, flashing an ornery grin when he's up to no good, etc.   We just keep reminding ourselves that at least he's not in liver failure anymore!

"I'll turn your world totally upside down."  That's an understatement!


Looking all sweet and innocent with his little feet crossed.

Friday, October 17, 2014

Mission: Undo What the Baby Did: Update 7

For the week of September 29, I got in 3 hours of exercise.  An hour short of my goal but my week was a little screwy.  We were supposed to head to Pittsburgh mid-week for Megatron's abdominal closure surgery but the surgery ended up getting rescheduled.  It threw me for a loop so I tried to cram in some exercise in the last half of the week.

By far the best workout was on Saturday.  I RAN 8 miles.  Not a run/walk but a RUN.  We stopped for a minute or two for water half way and walked through another water break closer to the end.  I was with my L2R gang and they really pulled me along.  They pulled me along so well that my pace ended up being at half marathon PR pace for me!  It was one last hurrah before we did head to Pittsburgh for Megatron's surgery.  It felt so good to hang out with friends for a good, challenging workout before heading into the stress of another hospital stay. What didn't feel good?  Sitting in a car the day after that 8 miler for 4+ hours as we headed for Pittsburgh.  Ouch.
And the week of October 6?  Nada. Unless you count standing next to a hospital crib or walking between the hospital and Ronald McDonald House.  Megatron had his abdominal muscles sewn back together on October 7.  The surgery went great but recovery was rough.  It was painful for him and very difficult for my husband and I to watch.  For about 3-4 days, it was hard.  Really hard.  As in, worse than the transplant hard.  But, each day got a little better and now we are back home to recover in the comfort of our own home instead of the hospital and then Ronald McDonald House.  And now that we are home, I can get back on the workout wagon!

Friday, October 3, 2014

Mission: Undo What the Baby Did: Update 6

Trying to make up for last week's discouragement, I woke up on Monday morning determined to turn it around.  As soon as I knew Megatron's afternoon nap was eminent, I strapped him into the run stroller and got to work.  The weather was perfect.  A couple miles in, something startled Megatron and woke him up but since he was being still, I figured he was still resting so I just kept going.  And going.  I stuck close to home since he was awake and I wasn't sure how long I had until his patience was out but he just hung out.  I kept pushing.  And I finally hit 6 miles!  That is the furthest I've gone pushing the stroller.  I also realized that it only took me 2 minutes longer to run 6 miles than it did the last time I hit a stroller run distance PR (5 miles).  I went an entire mile further in only 2 minutes longer!  While I may be discouraged by my lack of weight loss, seeing such a huge pace improvement was the confidence boost I needed!
 
Now that I have a sidekick with me, sometimes you just gotta stop mid run to check out the construction equipment.   The city is dredging our neighborhood pond, which happens to be a major rain water runoff pond for the city.  Downside to it is there is a ton of equipment rolling around on my path that I take for all of my stroller runs.  So far I've always been able to pass but they are making a mess of the asphalt.  Fingers cross they fix it!

After the 6 miles on Monday, a Jillian Michaels workout on Tuesday and two restless nights, I was dragging.  I still made myself go out the door though on Wednesday morning.  Megatron fell asleep quickly and I realized that I need to pay attention and recline his seat when he falls asleep so he doesn't slump over so badly...


It felt like I was running through molasses.  My pace was significantly slower than it was on Monday.  But I trudged through 4.5 miles before he woke up and I was ready to call it a day.

Thursday brought another Jillian Michaels workout but I cut it short after 45 minutes so I could pack a suitcase...

Because on Friday morning I was leaving on a jet plane!  After calling Southwest Airlines in January and crying while I canceled my flight to Orlando for the half marathon, I had unused funds available towards another ticket.  So I booked a flight to Denver to see my BFF who was going to meet me in Orlando.  We didn't get to do the half together but she was up for anything while I was in town.  In addition to just thoroughly enjoying her and her husband's company, we went for a run.  I was kind of wanting to get in 8 miles but due to heat and the altitude kicking my butt, we did just under 4 miles.  Hahaha.  Oh well.  I had a blast.  She brought her dogs so they were kind to me and we took breaks while they did their business and then took a few swims in the river we were running next to.  While hot, it was a beautiful day.  It was also a great way to see downtown Golden, CO.  I've been to the Denver area several times now and love it!  Everyone is active and outdoorsy, plus the communities support the active lifestyles with lots of multiuse trails, bike lanes and water bowls all over the place for the four legged companions. :) It was also the perfect way to catch up with my bestie.  And reenact a photo we took about 15 years ago.  This time instead of wearing matching sweatshirts in he the Smoky Mountains, we wore matching technical shirts in the foothills of the Rockies.  We don't have matching perms or glasses anymore but that's probably for the best.
Early 90s awesome!

Still crazy....it's like time never passes.


Wednesday, September 24, 2014

Mission: Undo What the Baby Did: Update 5

I'm behind in my updates again so here's what the past two weeks of Mission: Undo What the Baby Did looked like.

Week 1: I'm still hitting my hourly goal for the week.  This week was 5.75 hours.  That was even with taking 2 days off.  Usually I've only been taking one day off each week.  Megatron was visiting his grandparents so I was buzzing through a mile long to-do list.  The very first thing I did after he left though was a Jillian Michaels workout.  I told you I'm determined to undo what that baby did to my body!  I also had a big victory.  I had my longest run since December!  The morning after Megatron left with his grandparents, I hit the road!  I ran 8 miles!  EIGHT!  The weather was PERFECT and I felt great.  I know I could have easily gone further but I knew it wouldn't be smart so I stopped.  I felt so strong the entire time which was reassuring that all the hard work I've been doing lately is paying off in some way.

Lovin' the cornfields in my hometown. :)
While Megaton was on "vacation," I spent one entire day cleaning and then went on a date with The Pilot but I also got in 13 miles total while he was away.  Thirteen miles while he was away meant 13 miles WITHOUT pushing the run stroller!  Happy mama right here.

I even got in an additional 5 miles once he was back from his grandparents' but The Pilot spent the morning with him while I went running with the local Moms Run This Town group.  That brought my mileage for the week to 18!  I can't even remember the last time I hit that many miles in a week.  Probably before my pregnancy.
But first, let's take a selfie! (Photo borrowed from MRTT page.) :)
I also spent some more time with the evil Jillian Michaels and made progress with the arms and abs challenges.  I still struggle with doing "real" sit ups and I am still doing modified push ups though I try to put my knees further away from my arms whenever I can.

Week 2:  I hit a bit of a wall this week.  I was pretty discouraged when I went to the doctor early in the week.  I've only lost about 2 pounds over the last several months despite kicking up the workouts several notches.  My bad cholesterol and triglycerides are also still high which frustrated me since I've cleaned up my eating significantly since we returned home after Megatron's transplant.  After reviewing my exercise routine and diet with the doctor, among other things, its becoming more apparent that my bad cholesterol and triglycerides may be out of my control and are genetic.  My good cholesterol and everything else looks great (looks better than it did in April) and since I don't have any other risk factors, the doctor decided it wasn't so high that I need medication as long as it doesn't get any higher.  Hopefully I can keep working on losing more weight which may help those numbers as well.  The whole ordeal was frustrating though.

In addition to that, Megatron has several medical appointments, including one sedated procedure, which is always stressful.  Nothing major, its just stressful and tiring.  I dealt with most of it on my own so by the end of each day, I was exhausted.  I was soooo ready for The Pilot to return home after 4 long days away.  I only got in one run and it was only 40 minutes while The Pilot stayed home with Megatron.  Ultimately what happened was in order to meet my goal of 4 hours of exercise in a week, I had to cram most of it in over the weekend once The Pilot was home to help out.

So I ended the week with 4.25 hours.  Just barely squeaking in there.  Blah.  It happened though.  And even though I was ready to call the week a wash and not even attempt to reach 4 hours, I sucked it up.  The Pilot pitched in and cleaned up the dinner messes after Megatron was down for the night so that I could spend quality time with Jillian Michaels.  I am so thankful that he has been so supportive during Mission: Undo What the Baby Did. 

Monday, September 8, 2014

2014 Emerald City Quarter Marathon

Better late than never.  On August 24, I ran/walked the Emerald City Quarter Marathon (6.55 miles).  This was the first race I actually "raced" since having Megatron.  There have been two 5k races but they were more for fun and about the mission of the respective charities (Arthritis Foundation's Jingle Bell Run and Lifeline of Ohio's Dash for Donation).


I did this race back in 2011 and remembered it being hot, humid and gross.  Why did I sign up for it again knowing I hate hot, humid weather?  I don't know.  Well, really it was because I was in desperate need of a race.  I wanted to do something my pre-baby-had-a-transplant self did.  Plus my friends were jumping off a bridge doing the race, so I signed up.

Me and Katy, pre-race smiles!

So guess what the weather was?  Hot, humid and gross.  The only thing that saved me from overheating and crying in a ditch was the fact that it was overcast almost the entire race so the sun was intensifying the heat.  I was so very thankful I didn't lose my mind and sign up for the half marathon!

Just like the last time, I struggled with shin splints in the beginning but after a mile or so that eased up. And just like with about every race, it took me about 3 miles before I truly felt in a groove.  Katy did the race with me and we chatted while doing a run/walk combo.  I'm still not back to running for consistent stretches so I just did my best to run as long as I could and then take a walk break no longer than a quarter mile.  For the most part that worked.

In the last mile, I was really starting to feel the heat and was ready to be done but I got a little extra pep in my step when two friends, Krista and Kristina, came flying past us on the half marathon course.  Yes, they both did the half marathon faster than we did the quarter.  No, I don't hate them for that.  ;)  They are amazing role models.  They run like the wind, have 7 kids between the two of them and are some of the strongest, caring and kind ladies you will ever meet.  Plus, seeing them fly by gave me some extra wind to carry me to a strong finish.

Katy lit a fire under my butt and made me run it in to the finish...starting the last run much sooner than I would have if I had been alone.  And we did have a great finish.  1:34!   I was pretty surprised to see such a "fast" time for my first real comeback race.  About 9 minutes slower than 2011 but considering all that has gone on in the last year, I was very proud of that time.  And as always, it's a blast to spend time with friends.  Especially friends who have supported me both on and off the race course...

Right before the race started a group of friends gathered around me and I was pretty sure they were about to tell me I had toilet paper stuck to my shoe since I had just returned from the portapotty.  But instead, they presented me with a medal.  They wanted to recognize that while I didn't get to do my planned comeback race in January and didn't get the Disney medal I was after, I got the best medal of all, my little Megatron.  Isn't this the sweetest thing you have ever seen?!  I love them all so much and am so thankful they are in my life and have really stepped up to help me cope through Megatron's challenges.

Mission: Undo What The Baby Did: Update 4

Given that it is Monday again, I'll update my progress from the past two weeks.

Week 1: Success!  I got in 5.75 hours of activity.  I did one stroller run/walk (5 miles) and was pooped.  I really wasn't planning on going that far but Megatron fell asleep later than usual (nearly 3 miles in) so I had to keep moving until he woke up from his nap.  I might be a rookie parent but I know enough not to wake a sleeping baby....even if it means putting in more miles.

I also did a 5 miler with some training buddies a few days later and I was so proud/excited that I was able to cover the same distance I did with the stroller but 11 minutes faster.  11 minutes!  It's amazing how much harder it is to push the stroller.  It also helped that I was with people for a couple stretches of my stroller-free run and was able to run longer and take shorter walk breaks.  Thank you Lisa, Jim and Kami!  You pushed me without even realizing.  Well....Lisa probably realized because she had to yell at me to start running after a walk break.

Week 2: Success!  I got in 6 hours of activity.  My most yet since keeping track and probably the most I've done in a week since the beginning of my pregnancy.  I was pleased to see how much this week added up to because I was pretty fatigued all week and not very motivated.  I somehow managed to force myself to get something in 6 out of 7 days.

I only did one stroller run/walk (4 miles) due to the heat but I did spend an hour and 45 minutes with Jillian Michaels this week.  I'm now on day 22 of the abs and arms challenges.  I'm really starting to hate planks but I'm still plugging away.  It was also a very fun week.  My hubby joined me three days in a row.  The most fun was a 45 minute hike with him and Megatron.  Love these boys!

In addition to the fun hike, I had a BLAST racing on Sunday!  I did the New Albany Walking Classic 10k.  My half marathon walking PR is at the New Albany race but I haven't walked the 10k since 2006!  Thinking back to that race, SOOOOO much has happened.  I didn't have a blog, a husband or a baby.  I'll post more on the race soon (so behind on race recaps!!).

I've completed 4 weeks of tracking my progress both by writing it down and blogging about it and I think both have kept me much more accountable.  Looking forward to adding it up each Sunday evening but not having the pressure of having to do a set workout each day is working.  I have to be flexible with Megatron in the picture but having a weekly goal instead of a daily goal seems much more obtainable to me right now.  I've been doing some kind of activity 6 days a week which is a huge improvement over the random 1-2 days here and there, with some weeks lacking completely.  I went ahead and printed out another 4 weeks of fitness calendars so I can keep it up.  My goal is still at least 4 hours each week but I'm seeing that 5 hours is still very reasonable.  As I get closer and closer to finishing the 30 day arms and abs challenges, I need to start looking for something new to do.  I like having the option of a quick 10-20 minute workout I can do on busy days, bad weather days, or days I'm just not into it.