Perfection and Wishes

As I posted on my other blog, I am a very lucky girl.  I know that.  I am so lucky for what I have in my life.  I have lost, but I have loved too.  Despite my loss, I still am lucky to have so much more than what some people even dream of.  And for that, I am so very thankful.

But knowing that I am so lucky does not stop me from wishing for more.  Selfish?  Maybe.  Normal?  I like to think so...

There's the obvious- what I cannot have.  I wish I had Connor- that's an easy one.  Forever my first son... the first grandchild.  

I also wish I had an easy pregnancy, that I didn't go into labor early, that I didn't know the inside of the BIDMC NICU like the back of my hand.  I've said before... I wouldn't go back and change things because I know that the steps I took are what brought me to this place in my life.  But, I do wish things were different.  At least some things.

Other than wishing for what I cannot have, there are other things I wish for.  Maybe I can't have these either, maybe they're not to be, maybe they're not in the stars... but for now I still count them as possibilities.

I wish to get pregnant on my own.  No drugs, no doctors, no intervention.  I want to make a baby in the privacy of my own house with my husband and that is it.  I want to take a pregnancy test because I have a feeling and not because it's been "x" days since the transfer.

I wish to have a full-term pregnancy.  I don't want to find out at some early point that things are dangerously close to ending.  I don't want to wake up one morning only to find out that I'm in labor.  WAY. TOO. EARLY.  I want to wake up to labor one morning when it is right.  When the room is ready, when my bag is packed... when the baby is ready.  I'll even take making it to a scheduled C-Section.  I just don't want it to be early.

I wish to have the delivery of my baby be a joyous occasion, not one filled with terror and uncertainty.  This one goes hand-in-hand with the previous wish.  I want people to know they can celebrate with us.  I don't want them thinking they have to stay away.  I don't want them afraid.  I don't want to be afraid. 

I want to be able to hold my baby when he's born.  I want the doctor to announce "it's a boy!" (or girl) and hand the baby to me.  Or at the very least, have the baby cleaned and then handed to me.  I don't want to wait hours before I can even view my baby through a plastic cage and even longer before I can actually touch him.

I want my baby to go home with me the day I go home.  I want to be sore from delivery being wheeled out of the hospital by a beaming hubby with a sleepy little baby in my arms.  I don't want to leave the hospital empty handed again.

I want my first nights at home to be sleepless because the baby gets up every hour to eat.  I want to be deleriously happy and sleepy all at the same time.  I don't want my first nights home to be sleepless because I'm worried about a baby miles away being cared for by nurses and doctors; a baby struggling to live.

I want my baby to know only happiness and a life free from pain from the moment he is born.  I want the pricks of needles to be infrequent and out-of-the-ordinary, not the normal course of the day.  I want his cries to be of simple hunger or wetness and not of knowing the pain of having more wires and needles and tubes than anyone should ever know in their lifetime.

Basically, I want my next pregnancy to be nothing short of perfect.  

Though I know my next baby couldn't be anything more perfect than my 2 little men.

7 months

It's been 7 months since we lost Connor.  It's amazing how fast time is still passing-- through I know that Colby is part of the reason that it seems to be moving so quickly.

It still hurts to think about Connor, but it hurts in such a different way than it did 7 months ago.  7 months ago it was just a raw, agonizing pain of having my baby die.  The pain of not understanding, the pain of saying goodbye before I really got to say hello.  Now that pain has slowly become less severe.  It hasn't gone away, but that hole in my heart has started to heal.  It's not so dark-- it doesn't hurt to talk about him so much and I can look back to those first few hours and smile.  However, now the pain a horrible ache, a weight on my chest, when I think of how much I miss him and of how horribly things went.  The ache of losing the innocence-- of moving from a thrilled mommy of two beautiful, tiny blessings, to being a forever grieving Mommy wishing for nothing more than to have both her babies with her.

When we lost Connor I felt like pain of losing him was something that most people understood.  They might have really "got it" because they didn't lose a baby, but they "got it" in that they knew that it really sucked to lose him.  They knew that he shouldn't have died and that life would never be the same.

But now I feel so removed from everyone in my pain.  I feel like others-- friends and even family-- have "gotten over it" so to speak.  Yes, it still hurts to think that Connor died, but they don't understand how it still affects me because it doesn't affect them in the same way.  I feel like a piece of me is still missing, that a part of me is broken and can never really be put back.  They don't understand how I still sleep with Connor's turtle every 21st (and more often some months).  They don't understand that it's not a pain that goes away, instead it's a pain that changes, lessens in some ways, but intensifies in other ways.

Should Have

Colby's over 6 months old and has been home for exactly 3 months...

I've noticed a change in my thinking over the past few weeks.  When we first lost Connor and in the NICU and even when we came home I would constantly think about what "should have been". 

We should have been watching over 2 babies. 

We should have been changing 2 diapers.

We should have been feeding 2 bottles.  

We should have had 2 homecomings.

We should have had 2 cribs.

We should have had 2 car seats.

I should be rocking 2 babies to sleep.

I should be playing with 2 babies.

Connor and Colby should have been growing up together.

        ... and on and on.

Lately my thinking has been changing a little.  I definitely still have those moments where I dwell on the "should have".  (Today I should have been bringing 2 babies to the doctors...)  However, more than that, I've been wondering more about what Connor would have been like.  Up until now I think I've always thought of Connor as being just like Colby and it wasn't until recently that I've started to wonder how he would have been different...

Would he sleep well through the night or would he keep us up all night?

Would he smile a lot or be more serious?

Would he like Tummy Time or rather be on his back?

Would he love the Exersaucer or be overwhelmed?

Would he wake up bright eyed and smiling or crying?

Would he love the bath or hate it?

Would he love to cuddle when he's tired or would he rather be put down?

It hurts a lot to not know the answers, but I am so happy that I get to know all these answers with Colby.  

And randomly... I've started to notice a lot more that Colby tends to maneuver things with his left hand more than his right.  I don't know if it's left hand-dominance or if it's really possible to tell that sort of thing at 6 months, but it makes me smile and I find it pretty neat. (... And I feel like this is something I probably learned in one of my million child development classes...)

Missing Names

I think I've mentioned this before.  The NICU at BIDMC is a converted adult-ward.  It was converted into a NICU a little over 16 years ago in late 1993.  Because of this, it's not set up like a "typical" NICU.  Instead of large rooms with clusters of incubators there are 25, maybe 30, rooms each housing 2 babies.  

When you walk in the main entrance, you sign in and then along the left wall you see all the rooms going around the outside in a u-shape.  Each room has a sliding glass door covered by blue curtains.  Inside each room there are two computers for nurses to input their information, there are two incubators (or cribs depending on the baby), there are two monitors, and there is a curtain to divide the two babies to give families privacy.

 On the right there is a long u-shaped desk running parallel to the rooms.  In the very middle of the "U" bank of rooms the Level 3 babies are housed.  They are the most centralized to the nursing stations making it easy for nurses and doctors and therapists to pop in at the slightest sound of an alarm.  As you move to the ends of the "U" (back to the main entrance or to the very end of the NICU) you approach the Level 2 babies.  Alarms are fewer and it's generally quieter.  As babies became "feeder and growers" their rooms are moved toward the outside of the "U"-- they are getting closer and closer to go home.  Generally you needed to move to the outside of the "U" before you were discharged.  (Aside from a few full-term babies who were just admitted for observation-- they'd often stay in the centralized Level 3 rooms for observation and then be sent to the regular nursery without making the transition outwards.)

Oh the outside of each NICU room are two name tag holders.  When babies are admitted, the nurses write the baby's last name and slide it into the holder.  The baby in bed "1" is the top slot and bed "2" is the bottom slot.  Numbers next to the baby's last name indicates twins, triplets, etc.  So, when the boys were born this is what we saw in the NICU:

Connor was Jamerson 1, next to the door.  And Colby was Jamerson 2, next to the window.

Being smack-dab in the middle we got to walk through the NICU often.  In those first few days I was oblivious to the other names in the other rooms.  However, after we lost Connor and Jamerson 1 was removed from our room, I became much more observant as I walked through the NICU.  I would notice the twins and triplets.  (And ache every time I saw their cards.)  I would notice as families moved to the "outside" closer to going home.  Occasionally I would also notice that a name was no longer present.  This was more obvious with twins such as Connor... you'd see the "2" but not the "1" or vice versa.  I'd usually hope that I had just missed it and that the baby had gone home or perhaps had been transferred to another NICU or... something other than the worst possibility.

One such name was that of a little girl who was admitted around the time of the boys.  Her room was next to the boys.  She was the second baby in her room, her name was Maggie Lowe.  She was there and then her name wasn't there.  At the time I didn't think much of it-- like I said, babies were always moving rooms and some were transferred to hospitals closer to home as their needs decreased.

It wasn't until near the end of our NICU stay that I noticed a new rocking chair in the parent hallway of the NICU.  On the back of the chair was a plaque engraved with 

In Memory of Maggie Lowe 

July 2009

Reading it, and even thinking it now, my heart sunk.  Another baby that hadn't made it out of the hospital with her Mom and Dad.  Another set of heartbroken parents.  Connor passed away on July 21st and Maggie was still there.  In those 10 days before the end of the month Maggie, too, lost her life.  

I guess a part of me kind of wished that Connor was the oddity in the BIDMC NICU.  I hoped that the pain we faced that month was enough for awhile.  But I guess it wasn't-- more than one baby lost their life that month.  More than one set of parents saw their dreams end.  And I have no way of being sure that they were the only 2.  And that just sucks.

I guess I really have no idea where I'm going with this.  This is just something I've been thinking about for awhile... my heart aches for Connor but also for all of the families that have lost their babies.  

It just sucks.