Pieces from The Mighty

Monday, March 23, 2015

A Blast From The Past

A few nights ago after Ellie had gone to bed, my mom and I were watching television and doing some Facebooking while Tanner was still at work. My mom ran across a local listing for a 1985 new in box Cabbage Patch doll. I was interested mainly because it was a Cabbage Patch doll. When I was a little girl my parents took me to The General Nursery in Georgia where I adopted my very own Cabbage Patch doll from Mother Cabbage. It was one of my favorite baby dolls.

As we corresponded with the seller of the doll I started to do some looking into this particular Cabbage Patch baby doll when I realized that it was not just any Cabbage Patch doll, but it was a special edition March of Dimes preemie Cabbage Patch baby doll. When I realized that this doll was so very special, I just knew that we needed to have it for Ellie.

We do not refer to Ellie as a preemie (or more specifically a micro preemie) anymore, but, she once was a little preemie so this is part of her story and will always be a part of her and I thought it would be fun for her to have a special preemie Cabbage Patch baby doll. Although this baby doll had been packaged nicely, never opened or out of the box,  and not touched for 30 years, as soon as we got home Ellie and I got into the box and pulled her out! Tanner thought that we should leave her in the box as an “investment,” but Ellie and I wanted to open her up and give this little Cabbage Patch preemie some love.

Tucked inside the box with “Lorelei” was an envelope of adoption papers as well as a pamphlet from the March of Dimes titled “What is a Preemie.”

Although this was written thirty years ago, it managed to tug at my heart strings and make me cry.

The pamphlet talked about the “legend” of the Cabbage Patch Preemies as well as talked about what a preemie is.

One of my favorite parts of the pamphlet was this:

“Preemies are smaller than other Cabbage Patch Kids because they’ve been adopted at an earlier age. But besides that, they’re perfect in every way. With lots of love and care, your new baby Preemie will always be happy and healthy. “

When full term babies are born, one of the most common things to say to the new parents is that their new baby is “perfect.” When Ellie was born, we heard  many very nice things, but there were very few people that ever said that she was perfect. All babies are perfect, even if they are born early. I truly believe this. Both of my babies, Robby and Ellie, were/are perfect. Premature babies are absolutely perfect, and I love that this pamphlet made it very clear that although the baby was small and early, it is still perfect.

I tried to find some more information about the partnership between the Cabbage Patch dolls and March of Dimes, but I found very little on the subject. However, I did find that the reason that the March of Dimes wanted to partner with Cabbage Patch Dolls was to make sure that nobody thought they were making being a preemie into a lesser deal than what it is. There can be a fine line between shedding light on something so serious as a premature birth, and making it into something that appears it to seem like not a big deal. I think that the pamphlet that went in with the dolls was a perfect touch to help spread awareness about premature birth.

Premature birth is something that is very real to my family. It has affected us in the most powerful ways. There have been so many advances that have been made in premature birth prevention since 1985, yet there is still so much more to learn.

Every several months I see a certain image make its way around Facebook. I have seen friends as well as family members post this. The thing about Facebook is that even though information posted might not be true, it still can spread like a wildfire.

It makes my heart sad that there are people out there who would stop giving to certain charities such as The March of Dimes because of an inaccurate poster like this. Although I do wish that more money could be going specifically to research for the March of Dimes, the fact is that these places do need funded, and not all of donation  money can go directly to research. If it weren't for the funding and research, then Ellie might not be alive, and there certainly would not be any hope for a preterm labor solution.
Click HERE to see an excellent rundown of where all of the March of Dimes money goes.

The March of Dimes is responsible for the technology and advancements that saved Ellie’s life, and it is my hope that with more research funded by donations, they can continue to make even more advancements so that more babies can be saved. Although so many babies are saved and healthy, there are still so many babies, like Robby, who just could not be saved. The March of Dimes funds research that will hopefully find the cause of premature labor.

We have not ever actually participated in our local March for Babies, but it is something that I am passionate about and plan to do someday. Since Ellie was born, we have had several people walk in Ellie’s honor to raise money for the March of Dimes! We are so thankful to those friends and family members who did something special in Ellie’s honor! This year we are focused on Project Robby, so we didn’t feel like this was the year to start a team for March for Babies. I am positive that at some point in the future we will put a team together and walk.

For more information on Project Robby please click HERE

Although we do not have a team set up, I have a dear friend who does. One of the first connections I made with a fellow loss mother after Robby’s death was Karin who lost her little boy, Nathaniel a few months before we lost Robby. Each year they have a team that walks in honor of Nathaniel. Please consider donating to Team Nathaniel this year as they hope to raise $10,000.00 in his honor. Click HERE to donate to Team Nathaniel.

Wednesday, March 4, 2015

Project Robby: Phase 2

We have decided on the next project to pursue for Project Robby! We have had so many people ask us what is next for Project Robby as well as wondering if we are still accepting donations.
Our original goal for Project Robby was to donate 50 hats and 50 blankets to the hospital where Robby was born.  It is our desire to keep Project Robby going.  We want to do whatever we can to help families who are having to endure one of the hardest things, the loss of a child.
After Robby was born and passed away there were so many things for our family to think about and to do. We had to plan a funeral, pick out a casket as well as a headstone. We also had to think about flowers for  his tiny casket. During this time, it didn’t ever occur to any of us that we should be taking pictures. What didn’t dawn on me during this whirlwind of grief was that if we didn’t take pictures of his perfect little features, we would never see them again. Other than being able to have Robby here with us, one of my biggest wishes is that we had pictures of him during the 2 hours of his life and even right after his death. We didn’t realize at the time that the pictures that we took on our phone would be the only pieces of physical evidence that Robby existed.
We have spent some time thinking about how to make that process a little bit lighter for families who are going through the same thing.
I have mentioned before the foundation Now I Lay Me Down To Sleep. Photographers volunteer through NILMDTS to offer free photos of a baby who either has already passed away or is going to pass away.
Unfortunately, we did not have this option in 2012 when Robby was born. However, there are now two photographers in Wichita in addition to another one who is within driving distance!
Now, for the announcement of our project!
We want to help provide the photographers who volunteer to give these families these precious pictures with tiny hats and blankets to photograph the babies in and then leave with the parents. This way, the parents who have just suffered the loss of their baby will not only have the tiny hat and blanket that were on their baby but they will also have photographs of their beloved little one wearing these precious hats and blankets.  Although the hospital where we donated, Via Christi St. Joseph,  is well stocked with itty bitty hats and blankets, there are so many other hospitals that don't have the very small sizes for the extremely premature babies.
By providing these photographers with tiny hats and blankets we can make sure that even if the hospital where their child was born does not have a small enough size hat and blanket for them, they still have the opportunity to have something special for their child.
I have been in contact with our area coordinator of Now I Lay Me Down To Sleep,  Heartland Photography, and she is excited about this project. She was thrilled at the thought of having some very small sizes for the extremely premature babies.
When I asked her what the smallest gestation of baby that she has photographed, she said that so far 18 weeks is the smallest. We definitely had hats in our first phase that would fit an 18 week gestation baby!
On the NILMDTS website they recommend that 25 weeks gestation is about the youngest that the photographers that volunteer through them should photograph because of the undefined features of the babies born before that gestation. Looking at that statement from a photography standpoint, I understand what they mean. However, I was so glad to hear that the area coordinator from our area does take pictures of younger babies. I know that Robby’s features weren’t well defined. I realize that his skin was still slightly transparent and that his eyes were still fused shut. However, he was my baby, and to me he was perfect.  I wish every single day that I could see those beautiful features of his again, even though they weren’t all well defined yet. I will do my best to advocate for the earlier gestation babies to be photographed because as the mother of a 23 week gestation baby- I long for pictures of Robby’s short time here on earth.

It was because of all of the love and generous donations of tiny hats and blankets that the last phase of Project Robby was such a success. We would love for you to be apart of this next phase of Project Robby!
Our mailing address is:
Amanda Smith
P.0 Box 783
Goddard, KS 67052
Here is a link to our Facebook page: Click here to go to our Facebook page
Here are two pictures of size charts that might be helpful and you can find the links below:

Links to different preemie and micro preemie patterns:
Links to charts that list measurements by gestation: