Monday, September 30, 2013

Playing that card...

I've tried so hard not to play the "this isn't fair" card but it's a challenge to keep a positive attitude all day, every day.  Especially since we are now on day 13 of staying at Children's Hospital.  Megatron was in the hospital for 8 days after surgery but then a week after discharge, at his follow-up appointment, his lab work came back wonky.  We went back to the hospital, he went back under anesthesia and had some gunk drained from around his liver.  We are still waiting on the results and a plan.  For now, I feel trapped in this hospital.  I want to go home.

Walking around a Children's Hospital is interesting.  Sometimes it is sad to see so many kids with some pretty terrible conditions.  Sometimes it is refreshing because despite being in a not so fun situation, so many of these kids still do what they do best, be kids.  There is a kid on the surgical floor we are on that has been here for a couple months.  MONTHS.  Yet he was using his IV pole as a scooter and was rolling around the halls.   Kids really can find the fun in just about everything.

 Hey mom, I might be laying in a hospital crib but as long as you're here, I'm having fun!

And then there are the scenes that make me want to play the "this isn't fair" card.  The Pilot and I did everything right.  Megatron was very much planned.  We even aimed to have him at a certain time of the year when I wouldn't be so busy at work (didn't exactly work but you get my point).  This baby was wanted right from the beginning. I took every precaution, even the ones that probably weren't necessary but I didn't want to take any risks.  I didn't have any caffeine or alcohol my entire pregnancy.  I didn't get my hair colored.  I didn't even get a pedicure until my 3rd trimester (and ultimately the week before he arrived).  I ate healthy.  I exercised.  Yet my poor Megatron was still born with some missing/broken parts.  That's how it goes I suppose.  But then I walk around Children's Hospital and you see parenting at its worst.

I had an interaction with a man in the elevator.  He looked like a meth addict.  I hate to judge based on looks but he was filthy, smelled and had that meth head look.   He then told me his little girl was mauled by a pit bull.  Umm...ok.  The Pilot rode the elevator with a large man who commented that it was ironic that he was going outside to smoke while his kid was about to start a breathing treatment.  Wandering around the halls and all the different departments, we've seen parents who obviously have no interest in their kids.  Parents who have done something (or not done anything at all --neglect) that have landed their kid here.  And it's not fair.  Why is is that we did everything right and we have spent 13 days here?  And we will most likely be bringing Megatron here for follow-up appointments with a GI specialist until he's 18 or possibly 21 when he will transfer to an adult doctor.  We did everything right but that is going to be our reality.  It's just frustrating.

But then I'm put in my place.  I see a child in a wheelchair who obviously has very little brain function and requires a nurse 24 hours a day.  I hear parents being paged back to the pediatric intensive care floor. Sigh.  My baby, while still sick, can be treated.  It's going to be a rough road for us for sure but at this point, he can still be treated.  I try so hard to focus on that.  I try so hard to focus on those things I mentioned in my last post.   We do have so much to be thankful for.  I thought of something else to add to my list.  I'll be going back to work in 2 weeks.  Once we are all back home and we get into a routine that involves both of us working, and Megatron in day care or with my mom, our time will always be divided.  We will be pulled between work, keeping the household running and caring for our little man and ourselves.  Once we leave the hospital, it simply won't be possible to focus 100% of our attention on Megatron.  When you are trapped in a small hospital room, it is easy to find yourself just staring at a sleeping baby.  It's easy to tend to every fuss and cry within seconds of the sound escaping from that tiny body.  It's easy to focus and entertain the short-attention span of an 11-week-old.  Once home, his cry might have to wait another few minutes while a load of laundry is thrown in the wash.  Once home, as soon as his blinks start to slow and his eyes finally close, it will be a mad dash to get as much accomplished as possible until he's ready to be entertained again.   I'd give anything to take him home right now but I'm also trying to cherish the time we are getting to spend together because while nurses and doctors pop in from time to time, it's mostly uninterrupted family time.  Not many people get that opportunity.

It hasn't been all bad.  I haven't been confined to the hospital walls completely.  The Pilot was gone on a 4-day trip last week when Megatron and I returned to the hospital.  After being slightly traumatized by that experience and calling in the reinforcements (our families), when The Pilot returned, he sent me home for the night.  I slept through the night for the first time in over 4 months.  It was glorious.  Between the past 2 months of middle-of-the-night feedings and before that, having little man pushing on my bladder while I was still pregnant, I was long long long overdue for a good night's sleep.  I then also ran out to get my hair cut and colored yesterday!  A task I had wanted to do before I had Megatron but his early arrival changed those plans!

Those small things (that felt like big things at the time!) helped me regroup.  The timing was good because we are still in the hospital and The Pilot is getting ready to leave on another trip.  I'm trying to pump myself up.  While we have tons of help, when going through something crappy like this, I only want The Pilot by my side.  We are both stressed out and our nerves are shot but sticking together has made it all a little easier.  We've been pulling out all the stops to keep the mood light.  Of course our sense of humor maybe misunderstood (especially if we happen to, in good fun, refer to Megatron as our defective baby) but humor is just about the only thing keeping me together at this point.  It's the only thing keeping me from losing it completely and yelling out "it's not fair!"

Thursday, September 19, 2013

Thankful Thursday

Lately we've been very overwhelmed by life in general.  Learning to be parents while also dealing with an infant with a medical condition has been by far the most stressful thing we've ever been though.  After 8 days, Megatron came home from the hospital after his surgery.  We are still in a "wait and see" period as to if the surgery was a success but he is doing really well.  We are cautiously optimistic.

We've also been incredibly thankful.  That thankfulness is something I'm trying to focus on.  It helps me stay focused on the positive rather than the overwhelming stress.  And as a list maker, I made a list to help me stay focused.

So thankful for (in no particular order):
  1. Nationwide Children's Hospital and the amazing staff.  Especially the PICU nurses.  The overnight nurse never left our room.  Megatron was his only patient and he walked us through everything and reassured us each step of the way.  We're also very thankful to have a world class children's hospital right in our backyard.
  2. Our pediatrician.  While Megatron's surgery and GI issues are being addressed by specialists, our pediatrician was the one who stayed on top of the lab results those first couple weeks of his life and made the call to send us to a specialist.  She also showed up at the hospital while Megatron was in surgery and waited with us.  She was there when the surgeon spoke with us (and then translated the medical mumbojumbo for us) and she stayed with us while Megatron was taken from surgery down to the PICU.  She explained what we would expect when we saw him for the first time which definitely made it a lot less scary.  And did I mention that this was all after she worked a full day?  I'm sure it was after 10 pm when she left the hospital.
  3. Our families.  They have been with us each step of the way since Megatron's early arrival.  Both sets of our parents were with us most of the day while Megatron was in surgery.  My brother was there also.  My sister-in-law was with my niece and nephew so my brother could be with us.  My niece and nephew made cards for Megatron to cheer him up after surgery.  I think we both would have cracked under the pressure without their support.
  4. Our friends.  I cannot even begin to explain how touched I am by our friends.  They stepped up in ways that have often left me speechless.  They have dropped off meals, snacks, hospital care bags, even gift cards to use at the cafeteria in the hospital (8 days of meals in a hospital can add up!).  They helped feed our cats, take in the mail and bring the trash cans back to the house.  They sent cards and emails full of encouragement.  They texted and sent Facebook love.  They added us to prayer lists.  They visited us in the hospital.  I will never be able to repay them for everything they have done (and I'm sure will continue to do as we go through the recovery process).
  5. A 12-week maternity leave.  I'm still on maternity leave.  Not having to even think about trying to work through all of this has been priceless.  I don't think I could have done it!  It has allowed me to be with Megatron through all of this without even thinking about working around a work schedule.
  6. FMLA.  The Pilot took 6 weeks of leave after Megatron was born.  We decided to have him take an extended leave, even though it was unpaid, because his job is so unique.  It's one thing if he went to work and came back each night.  I wouldn't have the luxury of getting a break each evening if he worked a normal 9-5 job.  The Pilot going back to work could mean me being on my own with Megatron for days at a time.  So to help us all figure out the learning curve, he stayed home for 6 weeks.  Then Megatron needed surgery.  The Pilot went back to work for a week and now has taken another 2 weeks of FMLA so he could be here for the surgery and recovery.
  7. An emergency fund.  Eight weeks of no income for The Pilot and 12 weeks of reduced income for me and now a mountain of medical bills.  Scary.  I'm so thankful that we have an emergency fund.  Granted we always thought that fund would be used in case The Pilot was furloughed but that back-up plan is keeping us from also having a financial crisis.
  8. Humor and Forgiveness.  I've sometimes wondered how I would react in a crisis and how The Pilot and I would handle a crisis together.  Luckily we haven't lost our sense of humor.  It really is a coping mechanism.  We've done our best to see the fun in an awful situation.  While there was been A LOT of tears over the last couple weeks, and the last 8 days in particular, there have been a lot of laughs.  It's also been important for us to forgive.  You simply cannot hold anything against each other.  Especially for anything that is said or done between the hours of 9 pm and 7 am.  Nights are tough.   It feels like we are reliving the first 2 weeks of Megatron's life again in terms of sleep deprivation.  It's easy to snap at each other in the middle of the night when your baby is screaming and you don't know if its because he's hungry or if he's in pain from the major abdominal surgery.  Once the sun comes up though, all is forgiven/forgotten.  You get to start over.  Ultimately though, I'm thankful for my husband.  We've been a team from the day we got married and we've handled this situation as a team.
  9. Wifi and cell phones.  While The Pilot and I are still living in the stone ages with our "dumb phones," we were able to keep friends and family updated throughout this hospital stay.  We had a laptop with us in the hospital (which had wifi) so we could sort of stay in touch with the "outside" world.  Time seemed to stand still while we were in the hospital so zombies could have taken over the world and we wouldn't have known but at least we were able to send out updates to friends and family.
  10. Quilted toilet paper.  We basically lived in the hospital since the day before surgery.  It's sort of a combination of a bad hotel and a dorm room.  It took us a couple days of using sandpaper for toilet paper before bringing a roll from home.  :)
  11. Microsoft Excel.  I'm a planner.  I like to be organized.  Normally I thrive when it comes to lots of little details.  But for some reason I was completely overwhelmed by the medications Megatron needs.  I've been terrified to mess it up.  Some are once a day.  Some twice a day and then there is one that is every OTHER day.  The doses are all different.  Two of them can be put directly into his bottle.  There is a basket in our kitchen full of dosing syringes and bottles of medications.   I needed a spreadsheet.  I basically made a sheet with each medication and when it needs to be taken so whomever is caring for Megatron can just check off the medications that he has received so none are forgotten.

Sunday, September 8, 2013

Working Up a Sweat...On A Learning Curve

This past week I hit the trail near my house with Megatron in the BOB twice.  The first walk was just the two of us burning up the trail.  Not really.  I did 2.5 miles at a really slow pace.  The Pilot joined us for a second walk of about 3 miles.  Again, it was slow going but it felt good to work up a sweat.  I wore the Garmin more out of curiosity to see where I'm at after such a long stretch of not working out.

There is a big learning curve for me though.  One, I feel like I'm starting from scratch.  As in, back in 2004 when I walked my first mile to train for a 1/2 marathon.  Two, I'm pushing 40+ pounds of stroller, infant seat and infant.  Three, I'm still carrying about 8 extra pounds of my own weight.  I realize that is pretty good for only 8 weeks post-partem but it certainly changes my gait.  That's not even considering the other physical changes to my hips and all that jazz.

I'm going to have to get used to pushing the stroller because when The Pilot is away, I can't just not work out.  Megatron best get used to the BOB too!  Since I have to obviously use at least one hand to push the stroller, I can't get into a the proper race walk form (or run for that matter).  I tried to push with one hand and walking to the side of the stroller so I could at least swing the other arm but that felt awkward and I kept kicking the tire.  I think it will just take some practice and trying different things until I get the hang of it.  I also discovered that the beautiful, tree-lined streets in our neighborhood make for very bumpy sidewalks.  Now I know why I have seen moms pushing strollers in the street.  Luckily it isn't too far from our house to a trail that, which with the exception of the very first part, is pretty smooth.

 Woah, where am I? 
(And for those who are safety conscious, or if our pediatrician is reading, don't worry, those car seat straps get cinched down when in motion.)

The comeback will be slow but it was begun!  Plus, with the stress of Megatron's surgery, hospital stay and recovery, I need to keep getting out there to attempt to stay sane.  I'll let you know how that goes.

The trail ends at an elementary school with a map of the US painted on the we left Megatron in Texas for a quick visit.

Wednesday, September 4, 2013

I Didn't See That Coming

Not long after we brought Megatron home from the hospital he had his first "episode."  One that I think stopped both mine and The Pilot's hearts.  He turned bright red, arched his back, limbs went rigid and didn't appear to be breathing.  Luckily my infant CPR/choking training kicked in and I just picked him up, flipped him over and started slapping his back.  He finally gasped and started crying.  And then I started crying.  Sigh.  His amazeballs pediatrician thought it might be reflux but suggested we wait to see if he did it again.  He did.  And I think my heart stopped again, even though we felt more confident that he would be ok.

While I was pregnant I actually had hoped Megatron wouldn't be a gassy or colicky baby.  I had heard the horror stories.  And then I found myself giving a syringe full of Zantac to my baby twice a day.  Sigh.  Not fun at all.  Surprisingly, he takes it really well most times.  He just starts sucking on the syringe as if it was his bottle.  Still, having a baby who doesn't feel well sucks.  Heck, I had reflux throughout my pregnancy and you all know how much I whined about it.  Poor Megatron doesn't have the ability to whine yet so he just cries and arches his back.  And my heart aches for him.

But the reflux almost seems like a drop in the bucket compared to the news that came a couple weeks ago.  Megatron was jaundice so for the first 3 weeks of his life we had to have his blood drawn every 2-3 days.  It was not pleasant.  But finally the bilirubin levels started to go down and we were given the ok to wait 2 weeks until the next blood draw.

During that time we did our best to figure out the whole parenting gig.  It was rough!  The sleep deprivation is no joke.  There is nothing that can prepare you for that.  The Pilot was still home on FMLA to we kind of just holed up and tried to figure out the family of three thing.  Megatron was looking a lot less "tan" (from the jaundice) and was starting to get some meat on his bones.  We took those as good signs so when the results from the blood draw came back, we were pretty taken aback.

The bilirubin levels had gone back up.  Not good.  While jaundice is fairly common in newborns, especially breastfed preemies, it usually goes away by 4 weeks.  That wasn't the case for little Megatron.  The levels going back up indicated his liver wasn't excreting properly.

Enter the longest and most stressful week I've ever experience to date.  We made 3 trips to Children's Hospital, spending the majority of each of those days having tests done.  There was an ultrasound, lots of blood work and several scans in the nuclear medicine department. Most of it was much more traumatic for me and The Pilot than it was for Megatron.

We remained optimistic that maybe he was just having trouble since he was born early and just needed a little extra time to get rid of some sludge in his liver.  No such luck.  The doctors think he is either missing some plumbing around the liver or it is blocked.  Either way is not good and the only way to fix it is surgery.

When we found out, I felt like I had been hit by a bus that I didn't see coming.  In the two weeks since we found out he would be having surgery, there have been a lot of tears, anxiety and heartache.  This wasn't part of the plan!  Just when I feel like I'm getting a grip and coming to terms with what is coming, I'll have a set back and the fear creeps back in.  I'm doing my best to stay positive but there are times, especially when I'm feeding him and he looks so peaceful and perfect, when I just find myself crying.  There is a good chance he will need medication and monitoring for the rest of his life and that's not something any parent wants for their child.  I try to tell myself that it's not any different that me having asthma that requires daily medication.  It's no different than having diabetes or allergies.  But again, I don't want that for him.

Luckily because he's so small, he won't remember any of this and he will grow up not knowing anything different.  Also, hopefully I will have come to terms with all this by the time he's old enough to start asking why he's not like the other kids.  I've already come up with a story to explain the scar he's going to have on his belly....he was shanked by another baby in the intensive care.  All the other kids will think he has street cred. 

His surgery is next week so the blog is probably going to take a backseat for a little while.  He'll be in the hospital for awhile and we just don't know what to expect.  I've never been a "let's wing it" kind of girl but this sweet baby has other plans for me.  It's going to be a stressful couple of weeks for us but like with anything else I do, I'll just do my best to keep moving forward.  That's one skill Megatron is having to learn early on but will serve him well.  Just keep moving forward little man!