Sunday, March 31, 2013

The best thing to come home to....

Thank you all for the good thoughts and wishes for my surgery.  Everything went according to plan and I left New Jersey more confident than ever that I made the right decision.   Recovery, as to be expected, has been uncomfortable but definitely easier than my c-section.  

Surgery was around 11 am on Friday and lasted about an hour.  In addition to placing the TAC, Dr. Davis was able to remove quite a bit of scar tissue from the large hematoma that I had after my c-section.  I was up in my room by 3pm and by 7am Saturday morning they had removed my IV, catheter, and oxygen and I was up and moving around.  I was discharged around 3pm and was home just in time to see Ginny before she went to bed.   Boy, it feels good to be home :)

It feels especially good to come home to this!

And then we celebrated :)

Our Little Bunny

Happy Easter from our family to yours.  Once again we are reminded how blessed we are.

Wednesday, March 27, 2013

Transabdominal Cerclage

I'm not usually one to publicly talk about my reproductive organs.  If words like uterus, cervix, transvaginal ultrasound, and dilation make you twitch, you may just want to skip this post ;)  My hope is that this information helps other women navigate their choices for family planning after their preemie or loss.  

On Friday I will be taking the first step in doing everything possible to a full term or nearly full term healthy baby.

No, I am not pregnant.

No, We aren't planning a second baby in the immediate future.

Yes, we would like to eventually have another child.

Tomorrow I am traveling to New Jersey and on Friday I will be getting an Transabdominal Cerclage (TAC) by one of the best and most experienced doctors in the TAC world.  The transabdominal cerclage is a procedure where they open the abdomen in a similar fashion to a c-section and place a strong fabric band around the top of the cervix, just under the uterus.  It essentially keeps the cervix from effacing and dilating and is especially effective because it is placed at the very top of the cervix, eliminating any dilating force or funneling.  The decision to have this surgery has not been an easy one.  There have been many consultations with many doctors with many different opinions to get to this point.

Almost all of the doctors agreed that I had a congenitally weak cervix.  In addition to having a previously diagnosed uterine septum and surgery to remove it, I also showed all of the classic signs of cervical incompetence: I was fully effaced at 22 weeks and had painless dilation thereafter.  There was no sign of infection, my membranes did not rupture, and Virginia was completely perfect- all things that could have made the diagnosis of cervical incompetence a little more hazy.  I did not have a single uncomfortable contraction until I was over 7 cm dilated.  Even then I could have convinced myself that the aches were something other than impending birth.

Some doctors suggested a "wait and see" approach to a future pregnancy.  Umm ... no thanks, we were all shocked at how quickly my cervix changed then stabilized and then changed again. I am not willing to risk that approach.

Some doctors suggested a Transvaginal Cerclage (TVC) at 12 weeks into a future pregnancy.  I very seriously considered this option.  The problem in my case is that I had severe funneling (opening at the top of the cervix) weeks before I had any cervical dilation (opening at the bottom of the cervix). I honestly think a TVC could be successful for me, but not without a whole lot of angst, bedrest and hospitalization.  I have no doubt that if I were to get a TVC that I would be funneled to the stitch by 20-22 weeks.  Cue... lots of panic.  I simply cant do that to myself, my husband, my family, and most importantly Virginia.

I don't think anyone would have even mentioned a TAC none the less suggested the procedure if I had not asked about it.  There are only a handful of doctors in the US that do these procedures regularly.  Unfortunately this leads to a lack of statistics and awareness among the obstetrics and patient community.

I was completely shocked when I read the statistics - A TAC has a success rate of over 95%** for bringing pregnancies to term (37 weeks gestation).  A preventative (as opposed to a rescue) TVC has less than a 75%** success rate.  Most obstetricians and Maternal Fetal Medicine (MFM) specialists view the TAC as an extreme measure saved for people that have had 3 or more 2nd trimester losses.  The all too common complacency to intervene earlier in the wake of of 2nd trimester loss or extreme prematurity when the cause is clearly cervical incompetence is completely baffling and appalling to me.  No one should have to lose 3 or more babies to be at least be presented with all of the options for intervention.  

The TAC is certainly  more invasive than the other options.   It is an open abdominal surgery (open in my case but it can also be done laproscopically).  The TAC eliminates the possibility for delivering a baby vaginally.  For me, a vaginal delivery is not an option because I had a classic c-section with a vertical incision to my uterus.  There is a higher risk of uterine rupture with a classic incision, so laboring and vaginal deliveries are definitely not recommended.  This made my decision for a TAC much easier.

The decision was not made lightly but we feel this is the best one for our family.  We believe it gives me the best chance for carrying to term.  We believe it gives me the best chance to avoid bedrest and more importantly hospital bedrest.  Do we think a future pregnancy will be "normal"?  no way.  Will we be scared sh*tless still? Absolutely.

If you have some good thoughts to spare, I'll take them.  I'm hoping that this the dawn of a new day for us and someday helps bring us a big, chubby and healthy baby.

In the meantime things might be a little quiet around here.  Heath is holding down the fort with Virginia at home and Moma will be with me in NJ for a few days.  I'm hoping to be home in time to spend Easter with Virginia.

** These statistics were quoted to me by my physician.  I will add some of the published research that I came across some time in the future.  

Sunday, March 24, 2013

peek a boo

A very short video of one of Virginia's favorite games :)

and her favorite baby yoga pose

Friday, March 22, 2013

17 Months

Virginia is 17 months old today.  Goodness, where has my tiny baby gone?  

I was looking through photos last night and realized that my big baby still has the same "looks" as her itty bitty self.  




I can even see alot of Virginia today in this photo of her from week 3 of her life.  Many of her mannerisms are the same today as they were in those first few weeks.  

The way she tucks her arms in to snuggle is the same as the way she did it the first time we did kangaroo care.  

The way she furrows her brow is the exact same.

The way extends her arms and then her fingers out in protest.  The only difference is that she has gotten quicker.  

The way she keeps us on our toes.... I don't think that will ever change.  

Monday, March 18, 2013

marriage and the NICU

When I entered the hospital in the fall of 2011 Heath and I had been married a month shy of 3 short years.  Our relationship was on a pretty predictable path.  We met in college, graduated, traveled, started jobs, traveled more, got engaged, bought a house, got married, traveled even more, adopted a dog and then got pregnant.  In our 6 year relationship our biggest decisions had been where to take vacations and how to make career changes and our biggest challenges had been living far from our families and negotiating holidays.  This all changed in September 2011.

When I entered the hospital at 22 weeks pregnant with our first baby my biggest fear was for the life of our baby.  My second biggest fear was for my marriage.  In the best case scenario we were looking at 2.5-3 month stay on hospital bedrest and worst case we could be leaving the hospital in days without our baby and with only a memory box and heavy hearts.  I truly worried that this situation could literally break our hearts and our marriage.  I later learned that my fear was very much justified, many marriages are tested and break under similar situations.

What transpired were days, weeks, and eventually 5 months of love, patience and faith in one another and in our baby.

Our marriage survived by:

Communicating-   We communicated facts without emotion and emotion with disregard to facts.  We let ourselves get emotional about being in a crappy situation and get teary, irrational, angry and sad but we were sure to make decisions and talk about specifics without emotion when possible.  We also somehow knew when each other needed a break and needed to talk about something ... anything other than medical talk.

Taking the serious seriously and not taking anything else too seriously -  A little humor (at the appropriate times) was truly the best medicine for us.

Engaging our support system - We had so much support.  By being able to talk, vent and get advice from  friends and family  helped accomplish the 2 items above.

Our marriage thrived by:

Despite what seemed like chaotic schedules we had a surprising amount of quality time together - We spent alot of uninterrupted time together in the car and at Virginia's bedside.  There were no phonecalls, computers, ipads, iphones or tv's to distract us from being present with each other and Virginia.  It really was so much quality time, something that is rare these days with so many different screens that can stand between all of us.

Time to ourselves (together) -  Heath and I have always liked to eat out.  We took Virginia's 4 month stay as an opportunity to eat at many of New Havens fabulous restaurants and food carts.  Afterall, we had to eat sometime, so why subject ourselves to bad hospital food?  We ate at dive bars, hole in the walls, and fine dining alike.  We were always anxious to get back to Virginia's bedside, but those dinners became a vital part of working together as a team, communicating, and keeping things in perspective.

This is not to say that the challenges ended when Virginia came home from the hospital.  Like many other parts of our journey the finality of the hospital stage solidified that like parenthood, marriage is a marathon.  We made it through an incredibly challenging time but it was no time to rest.  Our Marriage was tested and certainly isn't perfect but is in a better place because of Virginia.

Thursday, March 14, 2013

radio silence

do you hear crickets?  Excuse the quietness lately.   Between some big impending deadlines at work and a busy little Virginia my head has been spinning.  Add in alot of March of Dimes stuff,  medical appointments, and trying to swiffer the floors and pick up pre made meals at whole foods   keep a household, I'm a bit tapped out.

Perhaps I should just drink those bottles to keep them out of her reach.  :)

Monday, March 11, 2013

sacred place

On Sunday Virginia and I made a trip up to Yale for the sole purpose of delivering Lily Wraps and Books  to the NICU and seeing our wonderful nurses.  We often stop by the NICU after specialist appointments at the hospital but it was a treat to visit this time without any overshadowing appointment anxiety.  We were honored to deliver 15 lily wraps and over 20 books on behalf of the overwhelming support that we received for our March of Dimes team during our 1 year homecoming anniversary.  We know that these donations are going to make a difference on a very intimate level for many families that walk through those sacred doors to the NICU, a place that only those affected can really understand.  We also know that that the donations to the March of Dimes are making a difference on a much larger level in the hopes that less people have to join that "club" and know what happens behind those sacred doors.   Thank you to all of you that supported this effort.  We will be doing this again soon.  

April of Lily's Amazing Grace creates such a beautiful thing for families of babies that go to heaven much too soon.  

We were thrilled that some of our absolute favorite nurses were working on Sunday.  These 3 women in particular played such important roles in those very early and very critical days.   They each spent alot of critical time with our little Ginny and without their attention to detail we may have had a very different outcome.   These ladies, as well as our other primaries, got to KNOW Ginny and all her 1.5 lb antics.   

Our stubborn girl gave Chris (on the right) a nearly 3.5 hour marathon to get a PICC line in.  And then another marathon for a PICC line revision and lumbar puncture.  Chris always checked in on Ginny and offered so much valuable advice and support throughout our NICU stay.  She was my go to person for questions on everything from vent settings to breastfeeding.  

Anne (on the left) was Virginia's weekend warrior.   Anne works Friday, Saturday and Sunday every weekend and provides so much consistency in what can often can become the blackhole of attending pass-off.  (Do the weekends lack productivity at other NICUs for the 'critically stable' kids??)   She believed in Ginny, she fought hard for her in rounds, she pushed the attendings for consistency and a plan when we were going on 7+ weeks on the vent, and she listened to us.  Anne also provided the best advice to me, something I will never forget.   During a particularly difficult and scary week during month 3 of Virginia's stay Anne pulled me to the side and told me "Alyssa, you are her mother, you know her better than any of us.  You are the one that will always know her best and you must trust what you know."    Her words released me from my own chains and empowered me to advocate on a whole new level for Virginia.  

Lastly, Nancy  (in the middle) was Virginia's daytime primary nurse in the ICN room.  Nancy was the first person I saw in the NICU on Virginia's birthday and the last person I said goodbye to on discharge day.   Nancy is not only an amazing technically skilled nurse but also has that instinct.  She really knows her babies, she knows their personalities and she knows their tendencies.  She really knew Virginia and I truly believe that we avoided so many problems because of Nancy's intuition.  I always said that Virginia gave Nancy and Amy (her night primary) so much trouble, but in hindsight I realize that alot of that can be attributed to them catching things before they escalated into something much more serious.  
Much like Nancy knew Virginia, she knew us too.  She understood us; She knew how to handle us in such a gentle yet realistic way.  She gives the best hugs, has the most caring words, has the patience of a saint and a hugely generous heart.  She also knew that I didn't like things sugar-coated and respected that.  I will be eternally grateful for her presence in our lives.  

These visits back to the NICU get more and more gratifying as we get further away from our time there.  The emotional healing that takes place when I return to that sacred place is unparalleled.  These are the days that I dreamt of in the fall of 2011.  I'm not sure I ever dreamt that they could look this good though.  

Friday, March 8, 2013

A Night of Gratitude

I am passionate about the March of Dimes because of my commitment to the mission of helping all babies be born  healthy,  but also because it has been a gateway to so much support and so many wonderful people for me and our whole family. There is nothing like meeting people that have walked in your shoes and really know how your world has changes.  One of those people is Brooke.  We met back in the Fall at the first planning meeting for the 2013 March for Babies.  We quickly decided to work together on a committee for Family Team development.  I was ready to set up fundraisers at Stop and Shop or the local pizza places, but Brooke and her Husband  dreamed up something BIG and I quickly hopped on board.   On May 10th we will be hosting a March of  Dimes family team dinner and fundraising event.

This event, A Night of Gratitude, will bring together family teams, their supporters, and the local community to celebrate and show gratitude to those who support the mission and those who have personally cared for  us during our journeys of prematurity or loss.  

If you are local to us in Connecticut or up for a road trip please consider celebrating with Team Go Ginny Go and all of the family teams on May 10th. 

Wednesday, March 6, 2013

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 2nd 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.  

Tuesday, March 5, 2013

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 :)  

Sunday, March 3, 2013

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.

Friday, March 1, 2013

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.