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...


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.

Saturday, January 16, 2010

Pregnant Woman Fights Court Ordered Bed Rest

***Helen added a link in the comments which I am posting here. It is a later article written about the case and goes into much more detail.***


I first saw this story on a support group but have since seen it popping up all over the internet. I found it to be quite appropriate for discussion here since there have been many times when comments have been posted about how we should treat women/pregnancies where prematurity (or the threat of prematurity) is involved...

Personally I do NOT agree with what was done to this woman and reading the article brought back horrible memories of when I was admitted to the hospital 11 years ago. My husband and I were sat down and told that once I entered into the hospital at 23.2 weeks (it was the 2nd hospital that I was taken to. The first hospital didn't have a level 3 NICU) that the health of our baby took precedence over everything else and I would not be allowed to leave until I delivered our child. I wasn't even allowed to leave my room unless accompanied by a nurse. I had to beg the doctor to allow my husband to push me outside to get some fresh air and that was only allowed once (after 2 weeks of being in one room). Even though I felt trapped (overwhelmed, scared, angry, sad, depressed, etc) I was willing to stay. But I can't even imagine what it would be like had I really wanted to leave and was legally stopped from doing so.

Wednesday, January 13, 2010

It Came! It Came!!

I received the most exciting thing in the mail today and it's not even my birthday.

Stay tuned...

Sunday, January 3, 2010

Should the Cost of Saving a Preemie...

Should the cost of saving a preemie dictate the minimum gestation that a preemie can be resuscitated?

This is such an emotionally charged topic but one that I find very interesting when you take your own personal situation out of your emotions and try to look at it from every angle.

An article in Politics Daily, written by Joann M. Weiner, brings up this subject (in relation to health care reform).

In her article she writes (of an article in the New York Times)...

Writing in The New York Times, Jane Brody told a very compassionate story of an 11-year-old girl who was born after just 25 weeks gestation, weighing only 13.5 ounces, but who is now, amazingly, an accomplished writer and illustrator. Brody did not cite the costs of the child's neonatal intensive care, other than to say that the infant spent the first five months of her life in a Falls Church, Va., hospital. (It is difficult to find data on such costs; one hospital in Rhode Island estimated the daily expense at around $2,000, which means that a five-month stay would cost upwards of $300,000.) The Times article concludes with a comment by Dr. Michele Walsh, a neonatologist in Cleveland, who says that although it is expensive to maintain "million-dollar babies," it becomes very cost-effective over time: "There is a return on investment when they get out into the work force and pay taxes."

That last sentence... that's where I'm stuck. Really stuck.

First off... the cost of raising a preemie can be far more costly than the NICU bill. I know of families who have hit their life time insurance cap before their child was 5. That would have been us had my husband not changed jobs (a job change made necessary because of our insurance issues). Preemies, post NICU, have years worth of specialist visits, therapies, tests, labs, equipment, hospital stays, shots (shall we discuss how expensive RSV injections are), mental health specialists (which is not well covered by insurance and largely paid for by parents) and medications.

Paige is now 11 (born at 25.5 weeks weighing 1 lb 12 oz). I cannot even begin to estimate that cost for our situation but I can tell you that it has exceeded the cost of her NICU bill. For many years she never went a week without seeing a specialist or therapist. After age 5 the weeks turned into months but she still never went more than a few months without having something jabbed into her to run some test. This went on for many years. So, when looking at the cost of prematurity on society, let's not stop adding it all up when they leave the NICU.

(On a side note... On New Years Eve I was sitting at my computer trying to think of something witty to write as my status update on Facebook when it hit me... Paige had not seen any medical specialists in 2009. None. I couldn't believe it. I got up from my computer and combed through the calendar... She saw her pediatrician once (regular kid stuff), had her teeth cleaned twice (regular kid stuff) and had both flu vaccinations (regular kid stuff). That's it. Oh boy did I ever cry. My poor child had endured 11 years worth of appointments (labs, visits, tests, etc) and finally had a break. Although she still has regular appointments with various mental health specialists... there were no medical doctors in her life for an entire year. I know it won't last (as puberty can bring back some of the issues that have subsided) but it was worth celebrating.)

Secondly, what about all of the preemies who will never work? Since the above quoted neonatologist can justify the dollars spent as an investment... where is the return on the investment then?

And to answer my own question... the cost of saving a preemie has never been a deciding factor to me when discussing resuscitation limits based on gestation. But I've been left with a few questions rattling around in my brain now that deserve further consideration.

(I'm going to open up the comments to allow anonymous comments)