Parents of Preemie's Day Guest Post- Rachel and Bella's story

I continue to be so blessed to meet other Preemie mamas that offer their support, advice, and empathy.  I'm honored to share today's  post from another micro preemie mom.  In the preemie world there is nothing better than a supportive mom that is a few months or years ahead of you in your journey.  Rachel is one of those supportive moms for me.  I find comfort in our similar stories and a peek into the future with her stories and photos of her beautiful Isabella.   

Rachel's Parents of Preemies Day Post

I’m lying in a hospital bed shaking. I shouldn’t be here. It’s Tuesday and I’m supposed to be at work. People are coming and going from my room, asking questions and writing on their clipboards. I think I can see the pity in their eyes as they try to force a smile while they gather my information.  So, you are 20 weeks and 5 days pregnant? A muffled sob escapes, and I just nod yes.  Too many questions are racing through my mind and I can’t concentrate on what anyone is saying. I try to breath in peace and hope, and exhale the fear that is paralyzing my body. I feel a small kick as my sweet girl reminds me she’s still here and  I reach down to rub my belly which has grown just large enough to require maternity pants. Oh my god; is my baby going to survive?

Nineteen days of fear, bargaining, begging, surrender, and hope ensue. Day after day of magnesium and ultrasounds and meeting with neonatologists who say it’s nearly impossible. And then late in the evening of May 2^nd my body is cut open and a child is taken from me. She is too small, but she makes a sound, a pathetic cry, perhaps her way of letting us know that she is here and she is ready to fight.  

Isabella spent 107 days in the NICU. She cried silently through painful procedures. She endured tubes and wires and needle sticks instead of floating happily in a warm and peaceful womb.  Every time she needed blood, her feedings were stopped. She was re-intubated 5 times. Her weight dropped to just 530 grams. And the worst part –she waited 29 days to be held.  Sometimes, during her most difficult times in the NICU, I would wish we could trade places so that I could take away all her pain and suffering.

While I never, ever wanted this to be our story, I now realize I have been given a gift I call “preemie mom”, and I am thankful for this incredibly painful and equally blessed experience. I am so lucky. I have learned a level of patience that I didn’t even know existed. And I have witnessed the strength of the tiniest human being. I have discovered that love is bigger than fear and faith requires a belief in God. I have been given the opportunity to practice letting go of the little things and I have found that worry is wasted time. I have been profoundly changed by a one pound child.  Nothing is taken for granted. Breathing is celebrated. Eating is a monumental achievement.

 2 week old Baby Bella

Today, when I sit and watch my child play, I know I am witnessing a miracle. My heart sometimes feels like it will explode from the sheer magnitude of joy and wonder as I watch my daughter do the things I was warned she may never do.  Listening to her footsteps as she pushes her baby stroller through the house I am reminded of the simple things in life. I take the time to stop and enjoy the moment. I know how close I was to never having this experience.  I’m pretty sure she does not understand just how amazing she is. But I know. I cannot erase the images of her birth, nor will I ever forget the struggle for her to just simply survive.  

Bella at 1 year old

Bella at 2 years old!

On March 10th we will join many other parent's of preemies to celebrate our journeys and to be proud. Grahams Foundation is bringing the preemie community together for their second annual Parent's of Preemies Day to honor the 13 million people each year that become parents too soon.  It is a day to honor the parents that are reluctantly sent on this journey, yet gather the strength, courage and commitment to parent these tiny babies.   Please visit their facebook page for more information about events in your area and on the web and join their worldwide twitter chat on March 10th from 2-3pm EST by using the hashtag #parentsofpreemiesday . Register for the twitter event here to be entered to win a prize pack.  

Virginia Lately

Virginia has been a very busy girl lately.  Nothing is safe from her quick grasp and speedy little crawl.  She isn't standing on her own or walking yet but that doesn't seem to stop her from getting into everything and climbing on everything.  

We recently had her yearly Early Intervention assessment.  Since last march she has been getting weekly therapies to help with her gross and fine motor skills as well as various other development.  She has really thrived under her care plan and has met all of her goals, but it is pretty clear that she won't be "caught up" by age 2 (that is a post for another day).  Her fine motor and feeding skills are great right now and just about on track for a 16 month old.  Her communication skills, social skills, language, and cognitive skills are still more on par with her adjusted age of 12-13 months.  Lastly, her gross motor skills are still the furthest behind.   

We have decided to change therapy providers as we make the turn into the 2nd year of therapies.  This decision was driven by my work schedule, but I am excited to bring a fresh set of eyes and some new ideas into Virginia's world.   I am admittedly picky because my Mom is a Pediatric Physical Therapist and I regularly wonder if we are missing something when it comes Virginia's IFSP.  Im not one to sit around waiting for "the other shoe to drop," but at the same time I am trying to be realistic that we are not out of the woods with complications related to her prematurity.   I really think the change will be good for us all as we help Virginia thrive as a toddler.

BobBob came for a visit last weekend.  Virginia loved playing with him and Heath and I loved the opportunity to go out for drinks with some friends :)  

Ding! Ding! Ding!

Heath and I had the honor of attending the closing bell of the New York Stock Exchange last Thursday as guests of  GE and the March of Dimes.  Being on the floor of the exchange and watching the National Chair and National Ambassador ring the bell was very exciting, but meeting other volunteers and supporters of the March of Dimes was what made the evening so special.  I am always so humbled to hear how others have been affected by prematurity and infant mortality and amazed how driven these people are  in preventing others from going through the same.  Together we are all making a difference.

The evening also served as a nice night out for Heath and I, something that we don't do very often.  Thank you to our babysitters, GE and the March of Dimes for making it happen :)

This was the second time that we had the honor of spending time with the National Ambassador Family.  They have an incredible story how prematurity impacted their lives in many ways.  Nina's parents were very familiar with NICUs before her birth.  Her dad works in sales for GE selling NICU equipment like the giraffe incubator and her mom worked as a neonatal nurse practitioner.  Even with their professional experience, it was not enough to prepare them for Nina's birth at 31 weeks.   Nina is now a healthy 8 year old and they are now very busy traveling the country to tell their story and spread the mission of the March of Dimes.  To learn more about Nina and her family visit here and see their video here.

foreshadowing prematurity - discovery of my own writings

I recently came across a CD of documents from my Freshman year of college while looking for some images from my Architecture Studio courses.   I was looking through the various files on the CD and came across a file called "Prematurity Research Paper."  I was rather shocked.  I would have never remembered writing this paper if I hadn't stumbled upon it, but as I read the paper it all sort of came back to me.  It was written in my second semester of my Freshman year as the final paper for  a class called Science and Technology Studies.  The course reviewed how science and technology impacted our lives and my particular professor focused her research on women's studies.  I don't recall why I chose to write about prematurity, but now I cant help than think it was a bit of foreshadowing.

I am completely blown away that at the age of 19 I wrote a 15 page research paper to "assess the positive and negative affects of medical technologies on premature babies, their families, our society, and medicine."  I am not only shocked by the shear amount of information about prematurity in the paper but by the complex world of medical ethics and societal impact that I evaluated.  10 years later I had to live that complex world as I was faced with an impending birth at the limits of viability.  

As I read through the paper my nervousness increased with each paragraph.  I did not recall what I wrote and I was worried that I would find my own words hurtful or insensitive now that I was living through something that I once contemplated from a technical, economic and ethical standpoint.  I came close to being offended by what I wrote as I skimmed statements like "overly aggressive treatment," but was relieved when I got to the first line of my closing paragraph:

"Social attitudes towards the impending disabilities of the premature infant are even more limiting than the actual physical impairments. People with disabilities themselves testify that their disability doesn’t often preclude them from enjoying a good quality life."  

I wish I had read this during those horrible days of "pre-viable" bedrest. I think my 29 year old self would have found quite a bit of comfort in my 19 year old words when we were contemplating all of the potential complications of prematurity.

Parents of Preemies Day

Becoming a parent of a preemie transformed who I am at my core.  Seemingly everything was taken out of my control; my impossibly small child was surgically removed from me 15 weeks early.  We had a month of bed-rest to prepare but no amount of preparation was sufficient for our impending journey.  It was like being catapulted into the ocean.  First we had to learn how to swim, but for a long time we were often just treading water.  Eventually we found our vessel.  Its was the same big ocean, just a different vessel.  

In the days leading up to Virginia's birth I was emotionally numb, I was scared, and I had enormous amount of guilt.  Everything changed within minutes of her birth.  Amidst a tense operating room a wonderfully sweet nurse placed plastic identification bands around our wrists, our first symbol of parenthood.  She tightened those wristbands and let us know that we had a feisty baby that was kicking all the way to the resuscitation room.  At 650 grams Virginia couldn't cry, she couldn't breathe on her own, and her eyelids were fused shut, yet she kicked and kicked and kicked.  From that moment I was so proud to be that baby's mom.  I didn't even know yet whether that baby was a boy or girl.  I hadn't yet seen her face.  I hadn't touched her, but I was so proud.  So proud that she was fighting.  She was fighting a fight that I couldn't fight for her.  She was fighting and I needed to be her coach in the corner.  I needed to advocate for her, pray for her, and support her.  I needed to pump, needed to be strong, and needed to be positive.  

The intense need for us to do everything we could to advocate for and support our girl has not changed.    Our vessel has been on a different course than what we ever imagined but it has allowed us to see the world in a new way.  I'm proud of the way that we have sailed our ship so far.   Im still most  proud of our first mate.  She kicked and kicked hard enough to swim with us until we found our way.  

On March 10th we will join many other parent's of preemies to celebrate our journeys and to be proud. Grahams Foundation is bringing the preemie community together for their second annual Parent's of Preemies Day to honor the 13 million people each year that become parents too soon.  It is a day to honor the parents that are reluctantly sent on this journey, yet gather the strength, courage and commitment to parent these tiny babies.   Please visit their facebook page for more information about events in your area and on the web and join their worldwide twitter chat on March 10th from 2-3pm EST by using the hashtag #parentsofpreemiesday . Register for the twitter event here to be entered to win a prize pack.  

1 year at home

Time is a funny thing.  Virginia's first birthday feels like SO long ago.  Her homecoming feels like yesterday though.  The good and bad moments that define my life are the ones closest to my heart and will always feel like they happened yesterday.  

Virginia's homecoming day was one of the proudest and happiest of our lives.  Her birth was surrounded with fear and unknowns (and if I can be totally honest, disappointment and guilt)  but her homecoming was just joy.  For that one day we forgot about the journey and we ignored everything that laid ahead and we just lived.  We were like any other first time parents coming home with their baby.  We asked ourselves "what now?" about 5 minutes after getting home,  we were excited to see how our dog would react,  we brought the bouncy seat to dining room while we ate dinner, and we prepared for a sleepless night.  Reality struck a few days later with a fury of appointments, feeding struggles, fears, and questions but for that day we just danced on cloud nine.  

Today we celebrated with crumbs cupcakes and some extra long snuggles at bedtime.  We are treasuring these days.  16 months old and 12 months at home... what a ride.  

Lily Wraps

I mentioned in my previous post that we are donating books and Lily Wraps to the YNHH NICU in honor and celebration of Virginia's homecoming.   We will be donating one for every donation to our March of Dimes team this week.  Truly every donation will make an impact.

Donating books was an obvious choice for us and something we also did at Virginia's birthday.  Most of the books on the NICU book cart are donated by graduate families and many come with a mention of how their family was affected.  The books that we have from that book cart gave us hope, warmth and love.

I recently met the wonderful woman behind Lily Wraps.  She so eloquently wrote about the story of how we met on her blog.  Go read it!   She is the mom to 4 beautiful children, one of which is a micro-preemie like Virginia and another little girl who was too small for earth and is now a beautiful angel.  April is also a NICU nurse here in Connecticut and is a tireless advocate for the March of Dimes and for prematurity and infant loss awareness. Yes, she is amazing!

We are so very aware of how we could have needed a Lily Wrap.  At 22 weeks pregnant my doctors offered very few options for care; most thought I would deliver immanently.  The darkest nights of my life were during the 2 weeks in the hospital before viability day.  I had so much HOPE but during those dark nights my hope wavered and I wondered how we would say goodbye and how I would memorize my baby's face.  My heart will never forget that anguish.

I can not imagine the pain of losing a baby.  I am sure it is a pain that is so raw and deeper than someone can adequately express.  I know far too many people that do know that pain.  I hate that anyone needs Lily Wraps, but I am grateful that April offers these perfectly small blankets to wrap precious babies and envelope the hearts of their families.

Please also consider donating directly to Lily's Amazing Grace.  100% of the donations go directly to Lily Wraps, NICU care packages, and Bereavement Boxes for local families.  http://www.lilysamazinggrace.com/p/how-to-donate.html