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!"


  1. I completely feel your frustration about the unfairness of parents who don't even seem to deserve their children, and why bad things happen to good people. It's so hard to try to make sense of it - you can almost kind of understand bad things happening to bad people, but babies and children aren't deserving of any of it. People always say that things like this happen to the people that God knows can handle it. I'm not sure I quite understand that either. But your little guy is completely blessed to have parents who wanted him, planned for him, nurtured him, and now will be there by his side forever while he deals with his issues. I know in the end, it will make your marriage stronger and your relationship with your son closer than it might have been. But for right now, know that your emotions are always valid - get frustrated, get angry, and let it all out when you need to. It does not make you a bad person for wondering "why", even when you see worse suffering around you. This is YOUR journey, YOUR family's struggle, and I think allowing yourself to stomp your feet in unfairness every once in a while is completely justified. You are a beautiful family, just keep doing everything you have been, and you are in my thoughts every day for a safe return home for the little guy. (and on a side note - new Pearl Jam album out in a few weeks! Stress relief in music form!)

  2. I volunteered at a children's hospital for about a year (I am currently on leave), I can totally relate to the interactions that you and your husband have had. Interesting people, that is for sure!

    My daughter was in the hospital for two nights when she was 4 weeks old. She had viral meningitis, and with that came a high fever. High fever + 4 weeks = hospital stay. Based on my experiences, I feel like there was a reason that my path was lead that way. It took a number of years, but I look back and know that she and I were there for a reason.

    You are on the same which you don't know "why" yet. But, it will become apparent one day. Stay strong! You and your husband are doing a great job!

    On a side note, every single time I hear this song I almost break down and cry...Swedish House Mafia - Don't You Worry Child. I love love love this song, and every time I hear it I always think about little ones in the hospital...and know they are on their path for a reason.

  3. I don't really have anything helpful to say other than, I'm thinking of you and your baby boy. You're a good mom.

  4. I completely understand what you are saying. I had a lot of similar thoughts when my son was early because he quit growing inside of me. I ate right, I exercised, I took care of myself. I think your feelings are 100% valid and I think that you shouldn't be so hard on yourself. Whenever I got emotional about our experience so many people were quick to point out that things could be worse and yes they can be but it doesn't mean that my feelings weren't valid and that I couldn't be sad about what was happening.

    Keep in mind that you had him 5 weeks early. I can speak from my own experiences that there are a lot of emotions involved with that too. It was months before I could look at a very pregnant lady without wanting to burst into tears. It was so hard to see many of my friends having children after mine was born and taking them home before I brought mine home. When I talked to other preemie moms I found out that most mothers of preemies go through a mourning period where they mourn the loss of their 3rd trimester. It is completely normal to feel that way. What I can also tell you about my experience, which I know is very different from yours, is that I look back at our NICU stay, our constant weight checks and worry about him catching up and I think to myself... wow that was really hard.... that was really emotional.... but I made it through it and it made me a stronger person and a stronger mother. I also hit a point where if I could go back and change how my son came into this world I wouldn't want to. It's his story and it's part of who he is. You may or may not see that now and if you can't I think that you will.

  5. I also want to say that sometimes I would sit in the lobby... right outside the NICU. It was the NICU and PICU... the lobby and then the cancer area for children. This little boy, who was probably 10 or so, was celebrating his birthday. He was in the hospital battling cancer on his frickin' birthday. The nurse set up this little pitchers and there purpose is for patients to pee in usually. Anyway he set up several in a triangle and then they took some type of ball and rolled them trying to knock the pitches over. Bowling.... on his birthday. Like you said... kids being kids.