Wednesday, November 16, 2011

Happy Birthday Paige!

Happy birthday to our dear sweet daughter!

Your journey has been one marked by many ups and downs. You've always been a fighter, never giving up. You are my hero!

Your Daddy and I are so proud of you. We've watched you grow into this amazing girl, one who takes what life has to offer and runs with it. You are constantly trying to figure out ways to make your body and mind work in the world before you, even when it can be difficult.

You never quietly watch injustices being done to others but instead you boldly stand beside those who need your support and show others the right way to treat people. You are such an asset to humanity!

You are a WONDERFUL sister. Growing up as an only child, you are the exact sibling to Tyler that I wished I had.

We love you Monkey!!




Paige-after her confetti shower



I did it! We celebrated Paige's 13th birthday and I didn't cry the entire day!




Wednesday, October 26, 2011

Tears, tears and more tears

Since my last blog post a lot has changed in our lives, as it obviously should since I haven't blogged in 10 months. But one constant seems to be that I'm quite teary. It seems that every time I turn a corner something happens that makes me cry.

Good tears and bad.

Some people may not understand why the act of crying is a big deal to me, others will completely understand when I explain. See, for the past (almost) 13 years I've held my emotions tight. After my water broke (at 23 weeks) and Paige was born (at 25.5) weeks I learned that crying would do nobody any good. I learned to turn off the tears as soon as they would come to the surface. It was difficult at first but became easier as the years went on. I'm not emotionless by any means. I just don't really cry often.

But there are the moments in life when something catches me so off guard that the tears start to flow before I can stop them. Sometimes I wonder if all the tears I should have been shedding over the years aren't stored up somewhere in my body. When the faucet gets turned on, 13 years of tears are trying to pour out.

Now I can't seem to turn off the faucet. We've had some big changes over the past 10 months, been in some pretty emotion filled situations too. I am constantly fighting off tears. Even as I type this the tears are trying to come out.

I'm hoping that by blogging again I can deal with some of these feelings head on.

By the way... I've missed you all. Silly, I know. But it's true.

Tuesday, January 11, 2011

Tuesday, March 9, 2010

Research in the area of Prolonged or Chronic Pain in the Newborn

(Sending "thanks" out to Sheila for posting this information)


Dear parents,


I would like to invite you to take part in research concerning prolonged or chronic pain in the newborn. In the last decades much work has been done regarding acute and procedural pain. Prolonged or chronic pain still needs exploration. With the aid of your opinion and the Delphi method we aim at describing the concept of chronic pain in the newborn, including a definition and description of etiologic and diagnostic determinants.

You can find detailed information about the background and methodology on www.ceepain.org

. Furthermore, on www.ceepain.org
you can participate in the first of our three-round Delphi survey. In this first round you will be asked to answer three short, open-ended questions.


With kind regards,

Christ-jan van Ganzewinkel

Neonatal Nurse Practitioner

Department of Neonatology

Máxima Medical Centre

Veldhoven, The Netherlands

Sunday, February 14, 2010

And The Winner Is...

Thank you to all who entered, blogged about the book and stopped by Team Spectacular to check out the wonderful work of Scott Wright. I want to thank Scott for not only writing/illustrating a truthful book about life in the NICU but also for providing a copy for our giveaway.

And now what you all have been waiting for...



Paige put all of the entries (49 numbered squares) into the tub that was used to give her a bath in the NICU.



She mixed them up,




gave them a good shake,



and picked one lucky entry...



and the winner is...




#35




Congratulations to tbonegrl! Please email me @ thepreemieexperiment@gmail.com with your address.

Once again, thank you all for supporting Scott with your kind words both here and on your own blogs. After you purchase a copy be sure to stop back here and let us know what you thought!

Sunday, February 7, 2010

Let The Giveaway Begin!!

I am quite excited to be a part of this giveaway. I swore I would never do this on my blog but that all changed the day I saw an on line page from this comic book.



Micro-Preemie Power, by Scott Wright, is a comic book journaling the NICU experience of Scott and Jodi Wright as they find themselves unexpectedly giving birth to a micro preemie. Their son, Morgan, was born 3 1/2 months premature weighing in at 1 pound 8 ounces.

Scott writes...

During these dark days I was completely barraged with questions from friends and co-workers. They asked, "How are you? How's Morgan? How's your wife?" I could never tell them the truth. It's not that I didn't want to. It just hurt too much to say, "My son is in the hospital and he may not make it through the day."

What I found myself doing after Morgan was born turned out to be an art journal. Everything I couldn't say to my peers began finding its way into my comic strip. I found it therapeutic. No matter what happened to him I wanted people to know his story. I knew that I loved that little guy and I would do anything to protect him. It made me realize I was a superhero just like all the other parents in the world."


I was first introduced to the on line comic strip, a year and a half ago, thanks to my "micropreemie" Google alert. I was hooked on the first one I read. I sat there, crying, reading the previous entries and then went back to the first one I had read and left a comment explaining that I would gladly promote it on my blog if he decided to turn the strip into a book. So, imagine my joy when I received an email, a year and a half later, from Scott letting me know that he would like to send me a copy of his book!

The day my mailbox surprise arrived Paige and I were leaving to go to her 3 month med management psych appointment. I decided that I would read the book while we were in the waiting room. The anticipation got the best of me and I opened the book while stopped at a light. Page 1... tears. Page 2... tears. I knew right then that I would be reading this book after the kids went to bed.

I could focus on the illustrations... yes, the illustrations are wonderful, but what makes this book extra special is that it is written through the eyes of a father. At the bottom of the strip, on each page, Scott and Jodi write personal notes. Through these notes you can clearly see the difference in which each parent is experiencing the NICU trauma.

And don't be fooled. Although this is a comic book, the content is NOT sugar coated. Inside you'll read about the alarms, needle sticks, not having enough time to research what is being done to your child, leaving your child in the hospital, family, the emotional highs and lows and even death.

I applaud Scott for giving the world a REAL view from the "inside" and not a fluffy-feel good depiction. Even the ending has yet another topic that is often dealt with among preemie parents.

Now for the fun... Scott has graciously agreed to give away 1 book to a lucky reader.

Here are the rules...

1. The giveaway begins today, February 7, 2010 and ends midnight (eastern standard time) February 13, 2010. The winner will be announced some time during the day on February 14, 2010.

2. ONLY ONE ENTRY PER HOUSEHOLD. You can enter by leaving a comment under this post. Do NOT post your address (you will be asked to email it to me if you win). If you enter anonymously please leave your name in your comment as a way of identifying you. You MUST at least leave your first name.

3. If you have a blog and you write a post directing people to this giveaway, I will add a 2nd entry in under your blog name! (please email me with the link to your blog post) This will double your chances of winning. (You will only get 1 extra entry, no matter how many blog posts you devote to the giveaway-let's be fair people) Your blog post MUST include a link to both my blog post and a link to Team Spectacular's on line store, where people can buy the book.

4. At the conclusion of the giveaway, I will either have Paige pull a name out of a hat or, if there are too many entries, I will use a site that will randomly choose a winner. I will post the name of the winner on my blog. You will have 48 hours to email me with your address.

And since I'm sure I will be asked (my readers have never held back)... I do NOT have any financial gain from this giveaway or any subsequent sales of the book. I am doing this because I truly feel that this is one of the best books out there that gives a honest glimpse of what we have all been through. My hope is that this book finds its way into the hands of the general public so that the face of prematurity is no longer misrepresented.

Speaking of sales... Let's remember that this book is written by one of us, a preemie parent. What better way to show our support than to head on over to Team Spectacular's store and purchase a copy for yourself. You won't be disappointed.

Many times we have discussed how friends and family do not really understand what we've been through. Here's your chance to show them... buy a copy for them too.

My apologies to Scott. No matter what I do I simply cannot get the photo of your book to fit correctly in this post.

Let the giveaway begin!!!!

Sunday, January 24, 2010

Fun Stuff On The Way!

I'm still trying to work out the details but in the very near future I will be filling everyone in about my mailbox surprise and holding a raffle of sorts so you can have one of your own.