Today my story was featured in my local newspaper, the Marin Independent Journal.
Here is the link to the article. In the online article they didn't include any of the pictures that were in the print article so I am including those pictures here:
I was contacted by the features writer and he didn't know much about preemies at all. He asked me what angle the story should take, I told him that I felt the main stream media did a horrible job of telling the stories of micro preemies, that the story is usually, "...oh so and so had a baby weighing just 1 plus pounds and they survived, it's a miracle...the family was released from the NICU and all is just great..." bleck! I hate that story. Think of Octo mom, think of the Duggans, think of any other story. it always ends at release from the NICU. My point is that's when the "REAL" story starts, that's when the families start realizing how hard it is to have a baby that is so fragile and that will likely have life-time lasting effects from their prematurity. That's the real story and Paul Liberatore did a great job of telling the untold part of the story of having micro preemies.
I've had a lot of out-reach since the story was published, with other thanking for telling the real story and to thank the write for doing such a great job!.
Here is the link:
9 comments:
Liz, what you said about how everything begins AFTER the baby is released from the hospital is SO true. Finally someone has said it!! I am the mom of triplets, one we lost, so now I have my twin boys.
We mostly did ok in the NICU but that's when it all began. They are 5 years old and we are still in therapy 4 hours a week (since they were 2!) and they are definitely NOT like their peers even though their problems are mild (no mental retardation, only mild CP for one of them, ADHD for the other, vision problems for one, weight gain problems, feeding problems, SPD, Autistic tendencies, the list goes on...)
When they were born alive and I took them home, I thought, ok we are out the woods, it was a horrible pregnancy but now I can settle in being a mom... wrong! My "normal" is not the same as the full term baby's mom normal... sigh.
Thanks so much for the link!!!
hugs
Tina in Greece
Hi Liz,
I stumbled across your blog researching preemie sites.
Years ago I gave birth to a set of twin boys at a tad over 2 lbs each. Although they did well in the NICU, they did not come without severe complications.
Both had Down Syndrome and autisum. We had the first DS twins to be born in St. Vincent's Medical Center in our area. Due to the fact my second husband carried only 45 chroms which leads to down syndrome births the Hospital in return paid there entire medical bill.
You can visit my blog www.daniellajana.blogspot.com there are pics plus I knit for preemies.
It was nice finding your blog. Blessings and prayers to your family. Dani
I just read your article in the paper after it was forwarded to me on Facebook. It brought tears to my eyes. I gave birth in November at 31 weeks to my son, who was not due until January 9th. After 6 weeks in the NICU he was sent home. It is so nice to hear someone shed light on the real problems once they are released. He just turned 4 months old on March 10th and so far has no permanent issues. We have been getting him the Synagis shot every month to prevent the RSV. He is supposed to get his next shot this week but the supplier called to tell us that our insurance wont cover the whole cost so we owe $900 per shot, which is at a total of $2500 so far. The balance needs to be paid before another shot can be given so we have no choice but to stop the shots. I am devastated over this. We have applied for several grants but were denied since we are not below the poverty level. I dont know what to do. It was refreshing however to read your story and to be able to relate to another mom who has dealt with the issues of raising a preemie. Thanks for your blog.
-Amy from Northern California.
Hi Liz,
I've just finished reading your entire blog (wow!) after hearing about you from the IJ article. I thankfully have not experienced any of the trials that you have had to endure in motherhood but being a mother myself, I can certainly relate to the emotions of motherhood in general. I think that you are amazing for your perserverence in fighting for your children, taking on so many projects in your work & community and still finding the time to tell your story. I admire you for being so raw and honest here on your blog, as it makes me feel like I don't have to put so much pressure on myself as a mother to be "perfect" all of the time. That it is ok to cut myself some slack when I'm feeling overwhelmed :) It also makes me appreciate my healthy pregnancy, birth, and healthy child. My heart breaks for you that you didn't have the "perfect" experience but I know that your children are happy and healthy now because of YOU. Shame on all of those who (in comments or life) have the nerve to judge you in any way! I am sure that they are all perfect mothers All of the time. I find it crazy that there are so many women out there in cyberspace who make it their business to judge and put other women down. I could go on about this forever so I'll stop. Clearly they are the ones with the problem, not you! I really just wanted to tell you that I think that you are a fabulous, strong woman and role model for all of us working mothers and wives out there. I wish you and your family all the best!
Found your blog from a preemie site and really enjoyed reading it! My son Ezra was born at 25 wks 6 days, 3 months int he NICU, a year on oxygen, ect.
Looking forward to cking in from time to time.
http://www.marchforbabies.org/TeamEzra
Found your blog from a preemie site and really enjoyed your shares. My first daughter Demilade was born at 25 wks 4 days. She initially had breathing problems, but she is really getting over it.
I am with you :) I did not know that life could be so hard sometimes.
Great blog!
hi liz , my name is Grethel i have a little girl named Vanessa who was born at 24wks four days , she weighed 1lb 11oz, 13in long , she has a bilateral brain bleed . your story gives me so much hope for Vanessa ,i have recently started a blog since finding yours . here is a link if you would like to read it http://mylilmermaidvanessa.blogspot.com/
Nice post thanks a lot
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