Wednesday, November 27, 2013

prematurity awareness - hear it from others

We have had the honor, pain and joy of sharing our story here over and over here for the past 25 months but nothing is more profound then learning that each story of prematurity is different.  Each story is profound and each story has changed peoples lives.

I'm sharing a few of my favorite posts that others have written during prematurity awareness month this year.  Again, with more awareness we will all make an impact.

Watch this video of little Ward to get the truest glimpse into the world of the NICU as I have ever seen. This video has gone viral for a reason!

Read about Boo and Jax and the world that most of us never knew existed before we were affected by prematurity.

Read about another little V and how not just prematurity but a single moment in the NICU can change people forever.

Read about the babies that may seem to be forgotten but instead are embraced and loved by the angels of the NICU.

Read about how guilt is such a large part of the prematurity journey from Jenny.

Read about all of the losses that accompany prematurity from Charlie's mom.

Read Laura's tremendous collection of prematurity facts of the day.

Learn about the two worlds that prematurity becomes for Heather.

There are many, many more stories (please share others in the comments) and all need to be told and retold.  More awareness is the path to lowering the rate of prematurity.  More awareness is the path to changing the perceptions of prematurity.

Friday, November 22, 2013

prematurity.... 2 years later

Last year as part of my post on prematurity month I wrote a post called Our journey in medical terms.  It was my attempt to convey the foreign language that prematurity is and how quickly parents and care givers must acclimate to the new language and unfamiliar world of prematurity.  

What I didn't talk about in that post is the lasting impacts of prematurity, especially the less obvious ones.  I will try to highlight some of these impacts below because prematurity does not end when you leave the NICU.  

We have hit our very expensive medical insurance deductible for the past 3 years and expect to do the same for the next year or two at least, yet we are thankful to have insurance.  Additionally early intervention services in our state are not free.  

Doctors and therapists come and go from our schedule.  It seems as soon as we drop one we pick up another.  This weeks new patient appointment - a developmental opthamologist.  I never knew there was such a specialty. 

We buy shoes that fit SMOs,  hand sanitizer in bulk,  sensory "toys" and hepa filters galore.  

The only way I was able to return to work was because I am fortunate enough to have a flexible schedule and found a wonderful Nanny.  

Thinking about another child is not a matter of considering how far apart we would like our kids to be in age.  For us and many others it is starts with the contemplation of the risks.  Then it is surgeries, high risk status, medications, and alot of worry.  

Superficially it may appear that prematurity is behind us but every day there are not only reminders but real impacts.  However, everyday I am reminded of the quote below through the magic of watching my 2 year old.

Sunday, November 17, 2013

world prematurity day

Virginia on World Prematurity Day in 2011, 2012 + 2013  holding her NNICU lambie.

World prematurity day is coming to a close and this little blog has had alot of visitors today (welcome to our little world, y'all!).  I typically have not linked this blog to any of my personal social media accounts, in fact the blog originated as a way of keeping things somewhat private (ohh the irony) and off of facebook when we were facing those terribly scary days of autumn 2011.  However, I realized that awareness was the the most profound thing we could do to contribute to reducing the rate of preterm birth.

Thanks to lots of friends posting and reposting our story, I feel like we have made a difference.  Given the alarming rate of prematurity in our country (1 in 9 babies) I am certain that we have reached someone that may be at risk for a preterm birth.  I hope by sharing someone at risk knows more about the warning signs and is more confident to advocate for their care.

Our story is everyones story.  We will continue to share it and hope that you do too.

please visit The March of Dimes to learn more about the risk factors, signs, and symptoms of premature birth.

and go to the World Heath Organization to see the global impact of premature birth.

Tuesday, November 12, 2013

hugs heal

Hugs Heal.

They really do.  They heal hearts.  They heal premature babies.

Hugs have quite literally saved millions of babies in hospitals around the world where neonatal equipment is scarce.  Pre-term Babies previously died under these conditions because they were unable to regulate their body temperature.  Kangaroo care was developed in and has transformed neonatal care in the developing world, saving many many babies.

Virginia was lucky enough to be born in a top notch hospital and lived in a high tech incubator appropriately dubbed the "womb with a view."  She could be weighed, fed, and given medication with little disturbance within her plexiglass box.  The incubator was also able to carefully monitor her temperature and provide humidification and heat as necessary.  Because of this available technology,  in our case kangaroo care was not necessarily life saving but our hugs certainly did heal.  It was healing for all 3 of us (Heath and I equally split our kangaroo care opportunities.)

I spent the first 3 weeks of Virginia's life peeking at her through the blanket covering her isolette and softly reading to her.  It was all I could do for her aside from pumping breastmilk every few hours.  I was envious of the other moms in our pod that held their babies each morning and night.  I watched closely as the well choreographed transfer of tiny babies and all of their equipment resulted in the calmest moments in the NICU world that was anything but calm.

There were an overwhelming number of ups and downs in those weeks.  The days were painfully long and sleep was scarce.  The future was a world of unknowns, forcing us to live and cope in the moment.    Things were so uncertain that I did not even know that I was going to be able to hold Virginia for the first time until moments before it actually happened.  

I will never ever forget the first hug I had with Virginia.  The tubes, IVs, tape, wires; while cumbersome, mattered little in that moment.  Her unbelievably small body settled into mine, her body relaxed and her sats stabilized.  We were finally back together again and it was truly the first time I felt like a mom.  I was providing her warmth and comfort and she was healing my heart.  hugs heal.

Honor these tiny babies by giving more hugs.
Hug your healthy kids.
Hug those you are thankful for.
Hug those who need it.
Hugs heal.

Thursday, November 7, 2013

spreading the word. making an impact. (video)

Prematurity awareness is more than just one story.  But this is our story and tomorrow night we will be sharing it with 250-300 people at a March of Dimes event just a few miles from the hospital where our story began.  In attendance will be several doctors and nurses that know our story and were vitally important to it, but there will also be a whole lot of people that don't know us, don't know our story and may not even know much about prematurity.  We hope that our story will have an impact tomorrow night.  More importantly we hope that our story gets retold.  That by sharing there is more awareness.  

If just one person knows more about prematurity because of our story than we have made an impact. 
If just one mom-to-be learns more about the warning signs of preterm labor than we have made an impact.  
If just one person tells another person about the staggering statistics of prematurity than we have made an impact.  

Go and share your story.  Prematurity is all of our stories.   Take the time this month and tell someone else about your child, grandchild, niece, nephew, friend's child, neighbor's child, or co-workers child that was born premature.  The stories will come alive and we all will all make an impact.  

Saturday, November 2, 2013

pumpkins, peacocks and prematurity

We had an awesome halloween.   It was my first experience as a parent to see the magic of a holiday through my child's eyes.  Virginia loved her costume and wore her ridiculous fascinator headband the entire night.... shocking, really.    I think she was mostly just stunned that random people were handing her candy.  Luckily she has sorta forgotten about all the candy and I have hidden the bag ;) 

Today, amid the candy detox, the calendar turned to November.  While notable for veterans day, thanksgiving, the anniversary of marrying the love of my life, and the acceptability of christmas music on the radio, November is also prematurity awareness month.  Last year I wrote quite a bit about prematurity awareness month and world prematurity day (November 17th).  While worthy of posts, I feel like most of the readers around here are very aware of prematurity and all of its implications.  Preaching to the choir much?  This year I hope to talk more about how we can all help make others more aware about prematurity and how we can all help support those who have experienced a premature birth.  

I look forward to the conversation, passion, and knowledge that happens this time of year in preemie social media community.  What posts are in the works?  Anyone doing anything at their NICUs on World Prematurity Day?