Monday, February 11, 2013

it stings

We should have been celebrating Virginia's first birthday this weekend.  I'm bitter that my biggest worry should have been canceling a birthday party because of the snowstorm of the decade here in Connecticut.

Allow me to sulk for a bit.  I typically try to focus on the positive things about the journey that we have been on.  We have met amazing people, we have watched Virginia overcome so much,  we have been awakened to our faith and most of all we have been embraced by so much support from family, friends and strangers.

There has been alot of shitty stuff along the way too.

I will always be haunted by the painful and life altering things that Virginia has gone through due to her prematurity.  There are few words to describe how downright awful the medical side of extreme prematurity is. Have you ever watched at 1lb 7oz baby clearly experiencing pain?  I have and it is awful.  I will leave it at that and instead finally let out  the other things that suck about prematurity.  I realize that many of these things may seem insignificant but unless you have gone through this it is hard to understand how much it can sting.

The fact that Heath never felt the baby kick.  He may have caught a glimpse of my stomach jumping as she did backflips while on bedrest but we never had that moment on the couch while relaxing at home, giggling over baby kicks.

We didn't see Virginia after her birth and she didn't cry.   It took 3 attempts to intubate her and we knew nothing during that time, not even if she was a baby boy or girl.  That moment where parents wait for their baby's first cry? ... we waited months for that.

Our first moments of privacy as a family came when Virginia was 4 months old.   The hardest and happiest moments of my life were in front of  dozens of other people with nothing but rolling screens to separate our 40 square feet from the rest of the room during the most private moments.

Only those people who knew I was pregnant knew I was pregnant.  At 22 weeks 1 day I drove my self to the hospital.  When I pulled my car into the labor and delivery valet the man who came to open my door looked at me and then informed me I was at the wrong entrance, he clearly didn't know I was pregnant.  Last summer I strapped Virginia into the carrier and brought her into my BV (before Virginia) daily lunch spot and the woman behind the counter thought I adopted her.  No lie.

There was no hospital bag. No comfy robe, soft blanket or newborn outfit.   We didn't even have a camera with us; forget about remembering power cords, snacks for dad, lanisoh or anything else on those mile long lists of "necessities."

We never took a birthing class but we were tormented by seeing the hugely pregnant women and their doting husbands parade past the NICU every Sunday and Wednesday for their birthing class and hospital tour.

Similarly the NICU was located next to labor and delivery for obvious logistical reasons, but this meant that there always seemed to be joyful families with balloons and flowers in hand waiting to see mom and baby as they passed by en route to go up to the post partum floor.

There was no third trimester, no registry gun zapping, no nursery furniture shopping, and no nesting.

Lastly there will never be a typical pregnancy or birth.  We hope to have another child some day but it will never be what most people experience. I'll never experience labor.  There will never be a natural birth.  Ill never get to experience having a big full term baby immediately placed on my chest.  Heath will never be the first to cut the umbilical cord.  We will never go through the process as it is described in those "What to Expect When you are Expecting" books, but hopefully it WILL happily commence with a big healthy baby.

P.S.   On the plus side I never had a glucose screening, group b strep test, swollen feet or stretch marks, and I was fully recovered by the time I was taking care of a "newborn" 24/7.

preemie moms & dads - what stings for you?  Feel free to share.  I felt much better after getting this out and having an adult beverage ;)


  1. I can relate to so much of what you write,even now 2 years later after the birth of my little preemie. Time does heal some wounds, but I still find myself bitter over so many things that no one can understand unless they have gone through it themselves. I joke that I'm going to print up t-shirts that say, "3rd trimesters are for sissies!"

    1. Your perspective helps us newbies, Jennifer! Your Georgia is gorgeous! I love state named little girls :)

  2. Hi Alyssa,

    I had to respond and tell you that you DID get screwed. It's not fair and you were robbed of experiences that most of us take for granted. That stinks. This is where you are though and I have been amazed and humbled as I watched you and Heath handle the cards you were dealt. Virginia is a very special little girl and she's also a very lucky little girl to have parents that fought and continue to fight so hard for her. I think you're awesome - just had to tell you that!

    1. Thank you Maureen. Your support has always meant so much to us :)

  3. Hi Alyssa,

    I've just found your blog today and have been busy reading about your amazing journey with Virginia. This post really propelled me to comment. My 25-weeker is now 4 and I still have a tough time on her due date! There is lots of downsides to being a first time parent to a tiny baby who fights for every breath and it's important to give those thoughts some space as well as being thankful for your passionate and wonderful daughter.

    I wish you many blessings as you continue to raise such a gorgeous girl.

    1. WOW this is a super late reply but I had to tell you how beautiful Eva is. stories like yours give us SO much hope. xo

  4. Hi Alyssa... I'm catching up on your posts, i always find myself reading a month's worth at time. i thought this was a good one to send you a big hug! You are always so positive, but it actually felt good to read through this and feel some anger with/for you! Life is so good, yet so frustrating at times.
    (On a separate note, i was fascinated by your post about the paper you wrote at rpi :-P)

  5. Hi Alyssa - I too am catching up on your posts. In my 5am pumping sessions, I find myself going further and further back in your journey and this one stopped me in my tracks. All of the anger and jealousy is still so fresh for me. I gave birth on May 2nd to 27 week twins and they are 36 weeks tomorrow. Seeing new moms leave the hospital with balloons and babies is painful and will be even the day I leave with my own babies. But I have to remind myself my babies will come home. Some Moms will leave without a baby. But don't get me started on hospital tours ;-P My pregnancy just makes me sad, but I have to keep my chin up knowing I did birth two beautiful babies that are fighters and are hopefully in the home stretch. This post is exactly how I am feeling but couldn't put into words. I find myself dreaming of another pregnancy for what I missed, although I know all too well that another pregnancy will never be "normal". Thank you for sharing your story, it gives me hope for mine!

    1. Thank you for reading. Even nearly two years out so much of it feels so raw and painful. I know it will get easier but I don't think that pain will ever fully go away. What I do know is that the further we get away from the NICU days the more amazed I am of Virginia and how strong and resilient she is (funny and sassy too.).

      I hope you are home very very soon and that your babies continue to thrive and blossom. xoxo