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 accomplish 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!

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. ❤️

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! 

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.

Sweat!

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!

35 In, 35 Out

My last post was a bit intense so here is a more lighthearted one.  While I'm about a month late posting, I did manage to take the picture on time.  It was a challenge since I was on my own at Ronald McDonald House.  I stacked up boxes as a makeshift tripod and then attempted to get Megatron to look at the camera even though no one was standing there.  Yeah.... 

Anyways, Megatron has officially been on the outside longer than he was on the inside.  As hard as it was at times to be pregnant, I think it was sure easier than the 35 weeks that followed!  I'm certainly thankful we made it though!  I don't even remember being "that" pregnant!  So much has happened. 

Another Marathon Report

I cannot believe its been 2 months since my last post.  It feels like I blinked and 2 months passed yet at the same time, I feel like I've been through a war in that time.  I've wanted to start this post for awhile but I just couldn't.  I'm not home from war yet so the wounds are still fresh.  I'm also still in survival mode so finding time to write has been difficult as well.

In my last post I mentioned that Megatron was added to the liver transplant list on January 24.  I can't even recall the order of events after that but there was a short time at home but then we ended up back in the hospital with Megatron.  His liver was failing and fast.  His health was starting to decline rapidly.  He was running out of time waiting for a deceased liver donor.

Somewhat quietly in the background though, a gift was in the works.  The Pilot's cousin drove from Indiana to Pennsylvania to be evaluated as a possible candidate for living donation.  He was a match.  While living donation is considered a last resort since it puts two people at risk, Megatron was out of time.  It was worth the risk and The Pilot's cousin was all in (I think I'll start calling him The Cousin. hehe).  Within a week of learning he was a match, surgery was scheduled and there was a plan to head to Pittsburgh.  It left us with a couple days to wrap things up at home and take care of as many loose ends as possible.

Never one to follow a plan though, Megatron started to have some labored breathing (due to fluid in his body but also because his GI track was so swollen, it was crowding his lungs).  Long story short, rather than taking a leisurely car ride to Pittsburgh on a Monday afternoon, Megatron and I got the VIP treatment again and on a Saturday morning(February 22) took another helicopter ride (The poor Pilot got the short straw again and had to drive).

Two days before the transplant.

Surgery was scheduled for Wednesday, February 26.  The wait from Saturday to Wednesday was excruciating.  Both Megatron and The Cousin both needed to be as healthy as possible for the surgery to still be on.  Finally though, it was official.  I can't even begin to explain what the night before felt like.  Lots of tears were shed after Megatron was asleep (though he didn't sleep much that night due to the unfortunate timing of cutting his first tooth).  I've always been an anxious person but this was a whole new level of anxiety.  Mentally you don't even want to let your mind wander to the worst case scenarios but at the same time, since his diagnosis, we have learned to hope for the best but try to prepare for the worst.  Especially since so often, Megatron has gotten the "worst" of the possible complications from biliary atresia.

Early in the morning on Wednesday, February 26, in a hospital a couple miles away, The Cousin's surgery began.  Knowing how scared we felt, I can imagine the emotions were running high for him and his family.  A couple hours after The Cousin's surgery began, Megatron was taken back. Leaving him with anesthesia for the fifth time was excruciating.  Especially since this time we knew it could be 12+ hours since we would see him again.  We kept in touch with The Cousin's wife all day via text message as well as through a nurse liaison who was bringing us updates from the OR. We received updates from the nurse about every hour.

• They are dissecting the old liver from Megatron's body.  He's doing well.
• The Cousin's liver looks good!  A portion of the left lobe is en route to the Children's Hospital.
• The liver has arrived.
• The Cousin is doing well.
• The liver is in and starting to profuse.  He's doing well.
• They are done with the surgery and doing a final ultrasound to verify all the connections are good.
• He's being taken to the PICU and you can see him within the hour.

It ended up being a roughly 8 hour surgery.  The Pilot, his dad, me and my mom sat in the surgical waiting room for over 8 hours.  Honestly, it was easier than I thought.  I think because the surgery he had when he was 7 weeks old took so much longer than expected, I had mentally prepared myself for the transplant to take longer than they estimated.  I was prepared to sit there for 12 hours so when it was 8, it was a relief. Strange as that may sound.  Nothing like being relieved that your 7 month old baby was only in surgery for 8 hours instead of 12.

Morning after surgery

The first night after surgery was awful.  Looking back though, I realize what I fighter we have.  Megatron was fighting through the sedation.  As the anesthesia wore off, they were giving him meds to keep him sedated since he was intubated.  They weren't working though.  He was thrashing around.   They gave him more meds but finally, he was maxed out.  The nurse (an average sized male) said he'd given Megatron enough medication that would have knocked him (the nurse) out for at least a couple hours.  Seeing my baby thrash around like that after major abdominal surgery has heartbreaking.   Finally, since he was at risk of pulling out IVs, his breathing tube or even his stitches, they had to give him another medication that essentially paralyzed him.  The good part of all this though?  His body was metabolizing medications fast.  Really fast.  The reason?  His new "big boy" liver was working.  Really really well.  Again, it sounds strange but while it was heartbreaking to watch, we knew that it was actually a good sign.

My sweet boy was still in there under all the sedation!

I could write a novel on everything that happened since but the Clif's Notes version is:

• He spent five days in the PICU.  He was off the breathing tube less than 48 hours after surgery.
• The next morning, he had an ultrasound.  He's had dozens but this was different.  As I watched on the screen, I realized I was looking at The Cousin's liver in my baby.  He had saved Megatron's life!
• Within 24 hours of surgery, Megatron's sickly, yellow coloring was starting to fade.  Within 48 hours of surgery, his eyes were white.  I cried the first time I saw them white.  I've never seen them that color.
• Within a week of surgery, he was smiling.  At everything.  Instead of working to get a random smile out of him, he was smiling at the walls.  At the nurses and doctors.  At the couch. At his IV pumps.  I'm not kidding.  It also hit me like a ton of bricks that he must have been miserable before the surgery.  He had been silent (no coos since Christmas) and didn't smile all that much.  He has never been what some would consider a cranky baby by any means but he certainly wasn't a ball of giggles either.
• He spent just 14 days total in the hospital after surgery.  Two weeks post surgery, he already showed completely normal liver function. 

Discharge day!

• About 10 days post-transplant, The Pilot had to go back home and go back to work.  He needed to work to keep up with the insurance premiums to pay for this adventure.  Just add that to the list of heartbreaking moments.  He didn't want to leave us and I didn't want him to leave.
• After discharge from the hospital, we were released to Ronald McDonald House, expecting at least another month in Pittsburgh.

• After 2 weeks out of the hospital, Megatron tested positive for EBV, a very common virus.  Not a big deal but in a baby who is now immunosuppressed, it can be harder to get rid of.  
• He had low grade fevers for a week (fever can be a sign of rejection) but since there were no other symptoms, they decided to keep him out patient and see what happens.
• We had a brief 3 day hospital stay when his fever climbed and he started to act like he did before the transplant (no wiggling or cooing, no smiles, just staring).  Some IV antibiotics and a unit of blood perked him up and was enough to send us on our way back to Ronald McDonald House.
• During that hospital admission, the Pilot was able to come for a visit!  After 21 days of work, dealing with a cold and more work, he came back to us!  He was around for Megatron to get discharged so for the first time since the end of February, The Pilot got to see Megatron outside of a hospital!

So that's what's been going on since my last post.  Heavy stuff, right?