Gangsta Mittens
Words combined to express thoughts. Pictures displayed to convey emotion. Opening my brain to the world.

To know me is to know that I have no patience.  I can always do it faster and better than whoever is doing whatever.  I don’t like to wait.  I don’t like to trust other people to do things.  I am an admitted control freak…

This process is torture for any parent, but it has got to be worse for those who do not like relinquishing control… who do not know how to delegate… and who always think that they know best.   I suppose a disclaimer is necessary here:  I trust the doctors and nurses.  They are skilled, compassionate, and have tons of years of experience with these babies.  That being said, I can’t help but to question their decisions and to wonder if maybe they should be doing something a little different. I fully accept that I am in no way, shape or form an expert in neonatal medicine.  But I just can’t help but to want to interject myself into the decision-making process.

The nurses assure me that I don’t overstep my boundaries, and the social workers have promised to tell me when/if I become detrimental to the process… and I appreciate that… I need that… but I’m still so overwhelmed by how little control I have over this entire process.

To put this in perspective, the NICU is a revolving cast of characters… The “constants” are the two social workers.  Doctors rotate every couple of weeks.  There are three shifts of nurses each day.  We’ve established some primaries for the Dictator who are the main ones who take care of him, but other than that, there are any number of nurses that might watch him on a given day.  The upside to the primary nurses is that they get to know him and, in my absence, they become like an advocate for him.  When a new doctor rolls in and says let’s try XYZ, a primary nurse can step in and say “we’ve already tried that” or “he does better when we do ABC instead”.  This can of course cause it’s own problems as all nurses don’t agree on what’s best, and sometimes they can be wrong too, but it’s nice to feel like someone in there has your back and the best interest of your baby in mind when you can’t be around, or when you have little idea of what’s going on.  The system works surprisingly well, but it sometimes feels like nothing I say matters, and that’s when the frustration sets in.

I’ve had doctors remind me that I have little to no real say in the course of action, and I get it.  I’m not a doctor, I don’t know what to do, but it still stings like hell to have it put that way.  And most of all, all i really want to do is make it better for the Dictator.  To take away any pain, soothe any fussiness, and just make him better.  It’s hard to see how much work he has to do to breathe and to know that it’s just his battle to fight.  All my life i have tried to step in and take the burdens of others.  Whether it’s giving a shoulder to lean on or just listening to those who tend to not be heard, I have always tried to help those who seemed to be fighting so hard.  But this time, all i can do is sit back and watch.  Maybe a hand on the back… maybe some encouraging words, but there really is nothing that I can do except to wait, and be patient.

Stephen is doing his best to keep moving forward.  His weight is up, the breathing tube is gone (for now), but there are still all types of other daily battles that he has to fight.  I think I felt like once the breathing tube was out we’d be fine… not that anyone told me that… but i just made the breathing tube the enemy and felt like once we got rid of it things would magically be ok.  I was reminded, once again, that I’m not always right.

After the breathing tube came out, he started to have stomach issues… bleeding in his stomach to be specific.  All of the tests for possible causes were negative, so we honestly have no idea what caused it. They paused his feedings for awhile, but have since resumed them and he’s putting on weight steadily.  His breathing continues to be an issue, but at least he has moved away from the most invasive of the breathing helpers.

I’ve been doing my best to make some progress too.  I find myself becoming increasingly annoyed with people… not that i didn’t expect it… but it’s tiring having to explain myself all the time.  I’m not surprised that people who don’t know me say ridiculous things, but it’s hard to hear stuff from people who claim they do.  I had a good talk with a coworker about mothers who make a decision to maintain their identities outside of their children.  I fully understand that that is frowned upon by society. I constantly hear how my life will/has changed because we had Stephen.  I hear about the things that I need to do differently.  The things i can’t do… and i just have to shake my head.  I’m not crazy.  I know i can’t take my child to a strip club or have the baby at the bar while i’m getting hammered.  but having a child doesn’t make me a leper or a shut-in either.  I was me before he got here… and honestly i kinda like me before he got here… i’m not letting that go.  I like working to help people.  I like hanging out with friends and going out to eat and having a drink at the bar.  I don’t intend to let that go and i don’t intend to become some different entity now that the M-word applies.  The reality is, i’m still me, it’s the people around me that are being different towards me.

I made a comment about being exhausted the other day, and someone was quick to chime in “welcome to parenthood”… Uh… I went to law school and worked full time and was on the editorial board of the administrative law review… you think that parenthood is the first time i’ve been exhausted?  Shit like that is like nails on a chalk board to me.  Some one else said “get ready for gray hairs”… umm i’ve been going gray since I was 20… just like my mom.. same pattern of gray and everything…  I still drink mojitos… i still go out to dinner and stay up too late… and all that other stuff.  I still want to work.  I still want to be me.  it just seems like everyone is disappearing and assuming that I can’t/won’t/don’t want to be me anymore.  As much as I try to be me, folks aren’t willing to let me do it.

I’m not naive… i realize that a lot of the things that i’m able to do are greatly simplified by the fact that stephen isn’t home with us, but i’ve seen enough people carry on with their lives besides their “plus 1”.  I had a long talk with my mom about the same topic.  She fully acknowledges that she gave up a lot for the sake of her children and she regrets it.  She doesn’t regret us… but she regrets not doing more because she made us the most important thing in her life.  She reminded me that your child doesn’t have to be the end all be all in order for you to be a good parent, and I plan to hold on to that.

Every school I attended from birth until 12th grade focused on religion.. yep.. not only was i a private school kid… i was a catholic school kid.  I was baptized, went thru confirmation, all of that stuff.  I have godparents.. i am a godparent… all those things you’re supposed to do…

That being said, i always had issues with my religion.  Early on I found myself dealing with the fact that I didn’t think we should judge people the way I felt the catholic church did.  I was also always bothered by the inherent sexism that I perceived in the church, so while religion was always an important part of me, i was often at odds with the entire concept.

As time went on i found myself more and more at odds with the church based on their stance on things like abortion and homosexuality. It got to the point where I pretty much swore off church.  But I still believed in a higher being… i just assumed that folks were getting his message wrong, as humans are prone to do.

By college i wasn’t going to church, although I still prayed faithfully.  I often find that I “crave” religion… i truly believe that there is something looking out for us and faith is an important part of who i am… part of the reason why i married brian was because of his upbringing in the church… there is something about being able to pray together and share a somewhat common set of beliefs that is… comforting.  We often talked about finding a church to join together.  But with his schedule and frequent late saturday nights followed by sunday morning working it just never fell into place.

Around the time my father’s health started failing…then my mother’s… and even more recently my brother’s, I realized just how far I had gotten from the church and religion in general.  I hated the fact that I found myself praying so much when i needed help, but not as often to just say thank you.    Then came Stephen’s early arrival into this world.  I feel absolutely lost… i try to pray, but the words don’t come out right.  I know that I really don’t have to say much, but there is so much i want to say.  I want to express gratitude for a blessing that I had all but given up on.  I want to express how grateful I am, but how worried i also am about what the future holds.  I want to ask for strength, but also acknowledge the strength that I’ve found that I didn’t know i had…   At the same time, church is so daunting to me at this point in my life.  In some ways i feel like an imposter.. i was gone all those years, and here i am popping up when i need something…

I know i put a lot all of that on myself, and I’m trying to get back to what once felt so natural and comforting.  There’s a church not far from the hospital that offers a 7:30am daily mass.  I am working on making that a weekly thing for me.  It’s not quite sunday mass level,  but I’m hoping it’s a start.  In some ways i feel like I’m grasping at straws here… trying to find something to believe in and to hold on to… but i also know i need a bit of familiarity to stay sane these days, so if this is what it takes, then it’s worth it.

If I hear the roller coaster analogy one more time… But i have to say, the description is apt…

The thing i hate most about the analogy is i’m not even sure which part of this is up and which part is down.  I guess it would depend on how you feel about roller coasters, all I know is that I’m sick and tired of this one already and i’d just like to hop off of it for awhile.

I would give anything for “normal” at this point, but I think we’re going to be stuck in the yucky/hurty part of this for awhile.  So far week two hasn’t been kind to little Stephen.  Today there’s a blood transfusion, wednesday they found bleeding in his brain.  His breathing is a constant battle and there’s just other little stuff along the way that make the mind race and the heart drop time and time again.

Quite frankly, we’re absolutely exhausted.  The more sleep you get the more tired you feel.  There’s anger, there’s hurt, there’s guilt… oh so much guilt, and there’s just not enough happiness to balance it out.  I’m tired of feeling mopey.  Tired of feeling like there’s nothing to smile about… especially since there are really good things happening around us.  Friends having babies, people pitching in to help us out, work, school, just a lot of other not awful things are happening, but it’s so hard to just soak it up, because the bad stuff is just so damn heavy.

In short, it hurts.  I know it’s natural to feel what we’re feeling.  But that doesn’t do shit to make it hurt less.  I know that rest is important, but i also worry about depression and anxiety setting in (issues that we both deal with).  I’ve been working on letting myself be vulnerable and accepting the emotions as they come because i don’t want to bottle them up or wall them off, but nothing about this is easy.  The things that I would love to do for our mental health’s sake, feel so wrong with all that’s going on… how could you go out to a nice dinner while your child is in the hospital?  how could you go watch a movie while your son is connected to 6 million tubes?  But those are the things that might keep us from going over the edge… so it’s a balancing act… letting yourself grieve/process everything without letting yourself get in too deep.  Constantly checking on one another and reminding each other that it’s ok to feel and to hurt.

I get it, and i’m trying to keep a level head, but if they would slow down this ride just a bit, i’d grab brian and stephen and hop off in a second… tuck and roll, folks.  tuck and roll.

Or at least it would be week 25 if The Dictator had not decided to flee.  Today will be day 7… In some ways time is dragging on, but in other ways, I can’t believe how quickly the week went by.
The Dictator is still pushing forward.  Breathing continues to be an issue.  They put him back on the ventilator for now but until he starts showing some initiative and breathing on his own, i’m not sure how long that will be the case.  That being said, chest xrays of his lungs show that they continue to open and that he is doing fairly ok.  The heart echo showed that the valve in his heart was closed so that is an awesome sign and today is his scan to check for bleeding in his brain.

The wiggle monster continues to wiggle, but he was still enough yesterday for me to get to hold him for a bit… HEAVEN.  I can’t even front, I was scared as hell, but the nurses are great.  They placed him on a pillow on my lap before allowing me to lift him and place him on my chest.  They covered him with warm blankets and there we sat for about 30 minutes.  They even gave me a mirror so that I could watch his little face as he lay there.  I did my best to breathe deeply so I could show him how it’s done.  I’m certain it had no effect at all, but it was nice to think i was providing him with some inspiration 🙂

I also wanted to use my first incidence of skin-to-skin contact to bond with him… to sing him a soothing song… and then today I realized that I don’t really know any nursery rhyme type songs.  I thought and thought about an appropriate tune to hum and came up blank… and then *this* song popped up… and this is the first tune I hummed for the young one:

Clearly I need to do better…

So far his papa and i have both checked his temperature and changed a diaper.  It’s amazing how much care someone so small requires, but like the nurse said, if you can do it while he’s this size, you’ll never have a problem.  So I suppose we’re making progress too.

We have this one amazing nurse who tends to work the evening shift.  Yesterday she took us to meet another baby in the NICU.  This little girl started off like Stephen at 24 weeks.  She looked like a giant!  She was 40 weeks and alllll baby.  I have no idea how they can grow them that big, but there she was.  It was so amazing to be able to look and see what is in store for Stephen.  When dealing with such a small guy, it’s hard to imagine that he will ever be “normal size” but slowly but surely I am certain we are headed in that direction.  Needless to say, I can’t wait.