Today is the one year anniversary of the day I started my blog. I still can't believe that one whole year has passed.
I started this blog driven by extreme emotion.
Extreme sadness-after 9 years of listening to new preemie parents at the beginning of their journey. I was, and still am, so very shocked that the preemies of today seem more affected by their prematurity, while they are still small. A diagnosis of cerebral palsy seems to come much sooner than it did 9 years ago (Paige's generation). I'm amazed at how many kiddos have brain bleeds now, compared to 9 years ago. Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago? Hasn't technology improved? Why are preemies still being diagnosed with cancer? Cancer that is a direct result of prematurity. Why can't this be stopped?
Extreme frustration-in our daily dealings with living life with a preemie and the long term issues related to prematurity. Not being able to get help for our child, in many areas, due to the lack of knowledge that the medical community possesses regarding older preemies, crushes our hearts. We are not alone. Preemie parents have little support as their child ages. School issues, breakdown of marriages, insurance issues, financial woes, sibling stress... the list is much longer and affects the extended family and the entire community as well.
Extreme disgust-at the media for painting a picture of prematurity that is so far from the truth that it is a crime.
Extreme anger-after hearing not one, but many neonatologists, talk about how preemies catch up to their peers by age 2/3. Hearing them speak to parents about their child breezing through the NICU and how that criteria means that they will be fine later in life.
And, the most disturbing aspect to prematurity that caused me to go over the deep end and start a blog was learning that no one, on a large scale, is following preemies to see what they are facing. How can treatment in the NICU improve if the current experiments are not being followed? Honestly... can someone fill me in as to how parents and doctors are making informed decisions if the long term (beyond age 2/3) outcomes are not studied.
I just went back and read my first post, written one year ago. Until today, I had not read it, since the day I wrote it. Wow, it was pretty raw. I can still remember the all of the above emotions running through my fingers as I typed.
I've learned a lot over the past year, about others and myself. I've learned that the world needs balance. We all don't feel the same way on every issue and that is ok. We are passionate about our kids and prematurity. That passion fuels our emotions. I've learned that I had a lot to learn. I encourage all to read the blogs that are listed on my side bar. Each and every one of them has brought something into my life and allowed me to continue on my journey, in an enlightened manner.
This blog would nothing with out all of the people who have commented here over the past year. As much as I would love to thank everyone by name, I am sure I would accidentally leave someone out. Whether you have left your mark here once, or hundreds of times, please know that I appreciate all of you!
I have received many sweet emails from parents who were thankful to have found this blog. I have shed tears reading your letters and hearing how you thought you were alone and how you have been helped by all of us here.
Then there are the letters from adult preemies who are now able to understand why they feel the way they do... I am so very glad you found your way here! And, you all have helped me to better understand Paige. I have made changes to the way I parent her after hearing your stories. Your voices and experiences are incredibly needed. I am honored to know all of you.
Finally, my hope for this blog is that it can be used as a tool.
If you are a parent of an older preemie who has not caught up to their peers, you will find that you are not alone.
If you are an adult preemie, I hope you that you will find some answers here.
If you are a member of the media, please notice that prematurity does not end at the NICU doors.
And, if you are a neonatologist, please spend some time reading about the long term issues that our kiddos deal with on a daily basis. Please use this information to help future preemies. Please don't just focus on getting them healthy enough to go home. They have their whole life ahead of them and deserve improved care based on outcomes of preemies past.