People Magazine and Micro Preemies

Adeline Belle 2 days old

I am going to try and make this short and to the point. I could go on and on.

Recently, People Magazine spotlighted six micro preemies. It was an attempt to inspire. In the preemie community, it infuriated. Unfortunately, this article portrays the micro preemie road as pretty uneventful. A stay in the NICU, a few steam baths in the tub and all is well. We, who raise these micro preemies beg to differ. The statistics quoted are taken from a cohort of surviving micros in the 80's and state how nearly 90% finished high school and more than half went on to college. The article failed to mention how many didn't make it out of the NICU. In the 80's only the strongest micro preemies would survive. I am positive the statistics would have been much more grim had they included the percentage of babies that were never brought home.

This easily segways to the fact that more babies are surviving with the progression of science and technology. Some of these babies would have not survived in the 80's and most likely suffer from a disablility today. If these same babies have escaped a diagnosis, they are certainly traveling with Adeline on her "not so smooth road" of prematurity.

I think that People Magazine had good intentions but covering a topic such as prematurity/micro prematurity isn't something that can be done in a brief article. Yes, I want to hear stories of hope. I want to hear them but don't necessarily think that they need to shower down on society. I scoured the Internet for stories similar to that of my babies in order to find hope and finding these six grown preemies would have lifted my spirits. However, feeding these slightly skewed stories to society only undermines the road of my girls. Most micro preemies don't live a normal life - plain and simple. Being born under two pounds isn't easy, the NICU isn't a mere hospitalization and steam baths don't fix chronic lung disease.

Possibly spotlighting one micro preemie and their very precarious road in the NICU and thereafter could have been a better way to go. This might be the way to get society to understand that babies like mine aren't assumed to live and most certainly are not expected to live a normal life. The odds are stacks against a micro preemie, not for a micro like People Magazine portrayed.

Click here for the article

A Day at Sesame Place

Last month, our girls were treated to a trip to Sesame Place, compliments of the Variety Charity. This charity reaches out to families that have children with disabilities or delays. I can't say enough about Variety. I love how they encompass the entire family for events like these. It isn't just the child that is living with the disability or delay, it is the entire family that lives it. Although you would never hear Savannah complain, I am sure the countless hours of therapy and doctor appointments that have left her to entertain herself in the background isn't her idea of a good time. Like I say in my blogs header, the twins have transformed my family. We are living a completely different life with altered priorities than we did prior to the twins' arrival. Variety has given us the opportunity to give back to our children - all three - for their time, effort and perseverance.

I put together a video that sums up the trip. It was our best trip yet. The weather was super hot for April and the girls were pushing through their nap time. It didn't seem to matter. We all had a fabulous time and kept going strong for five plus hours.

My favorite two moments will always be something I carry in my heart. When we went to see Elmo, Savannah and Lila couldn't wait to get up close and personal. Adeline wanted so badly to hug Elmo but the size, unfamiliar territory and crazy red fur served as a large obstacle. You can see in the video where she "hearts over matter" and leans in for a hug. The second heartwarming moment was watching Lila Grace delight in the parade. She jumped, yelled and pointed at every character. If I wasn't holding her back she was darting out onto the parade route. When Ernie came into sight she could barely contain herself. Luckily, a parade coordinator was standing next to us and flagged her as a child Ernie should visit. The professional photographers were aimed Lila's way as she was exhibiting the magic of Sesame Place.

Enjoy

Too Much Therapy??

Not only do the twins live a therapeutic lifestyle, their big sister does as well. Although she doesn't partake in the therapy, she is listening. Later the therapy manifests itself in various ways. Savannah breaks down directions like that of the therapists, pauses to say, "Eyes, Adeline.", and often is thinking of ways to reinforce what the girls are learning. Recently, Savannah created this "learning page." Double click on the image to see the details.

It says. . .

Sing the ABC for me

Is this a tree?

Is this a ball or an egg

All of course written using inventive spelling.

I'm a Mother to a School Age Kid

Where did the time go? I still want my sweet Savannah all to myself but instead have to share here with the school district in September. This has been a rough week for Savannah as the transition finally sunk in. Many times she would break down in tears saying, "I'm going to miss my teachers." " Me too," is what I was thinking.

Savannah was lucky to have a wonderful Brandywine experience with the perfect teachers and classmates. Our choice, to hold her out of Kindergarten last year, paid off. She has blossomed, broken out of her shell and is becoming a kind, compassionate (already had those two qualities in the bag) and confident girl. I couldn't be more proud of who Savannah has become.

I will miss dropping Savannah off at Preschool everyday, chatting with her teachers and watching her interact with the other children. I remember her first day of school. I was so worried she would cry but she didn't. She was so brave and walked right in (she saved her crying for a later date). This, of course, transpired while the twins were in the NICU. It is baffling that I will drop Lila Grace there next year. I guess it is a full circle experience.

Today was Savannah's last day. A big day it was.

We curled

She passed out programs

She sang

I cried

I tried to keep Lila's stage presence to minimum but she finally snuck up to her sister


She graduated

We posed

And then we were off to Sesame Place (without a camera this time in order to just enjoy the girls and not make them pose every two seconds).

We ended the day with neighbors and a mini celebration for our big girl.

Mini Golf

Savannah's end of the year get together was at a miniture golf course. I was dreading it because I had to bring the twins. I was sure the water and other golfer's balls would be a disaster. Surprisingly, the twins were on their best behavior. They simulated into Savannah's class, walked in line and listened to directions. Soon we were golfing. Funny that this was Savannah's event and I spent very little time with her. I was with the twins on our own hole most of the time.

Lila prooved to have some talent, albeit from her knees. She would sit the ball two feet away, kneel and then hit it in the hole. She made it quite frequently. Adeline tried but usually hit it too hard if even hitting it at all. She was soon distracted by the water and was madly throwing her ball in the ponds whenever out of my eye sight. She would toss it, look at me with a huge smile and give me her fake laugh. I would then fish out the ball with the net to only do it all over again two minutes later.

Savannah was reported to be a very serious golfer. Surprise surprise. . . does she do anything half heartedly? She was very proud of her performance and had to take me back to where she hit the ball up a steep hill.

After two and a half hours of golf we were off to a park for lunch with friends. The girls held up really well. We were outside for five and a half hours today with no breakdowns. The girls enjoyed the fun in the sun. I have to imagine they are going to sleep their life away for this nap as they were go go go the entire time. Can you tell how happy we are to be outside again after a very long winter?!

The favorite hole was a when the ball went in a tube and magically appeared below.

A New Friend

While I should be blogging about our transition from Early Intervention to IU or my thoughts on People Magazine and their veiw of Micro Preemies, I am just too tired. I guess I will share a couple of quick flicks of my girls' new friend instead.

We attended a get together across the street and my "deathly afraid of dog girls" seemed to take to little ol' Shaggy. Adeline, of all people, started the friendship. The girl who doesn't like animals (freaked out by frogs and turtles that have been brought into her preschool classroom) decided to play ball with Shaggy. This surprised me on many levels, primarily because Shaggy is jumpy and all over the place. I am also astounded she picked up a furry, wet tennis ball. Definitely a sensory no-no in Adeline's book.



You can see Adeline fight her desire to step on the grass to get the ball in this video. Eventually, Shaggy is the one to give in. Please disregard the clinging of beer bottles in the background.


On a completely different note, Savannah had a Letter People Parade at school. School functions are always a nightmare for me because the girls want to run wild or take part. Lila Grace, to no one's surprise, hopped right in the parade with her Nana (Savannah's nick name in this house). She was pretty cute.

Savannah chose Mrs. W. I was a bit confused at first because I figured Savannah would want to be Mrs. S. She said she chose Mrs. W because she seemed like a calm and quite character. I guess Mrs. S leaned toward a super hero and that put Savannah off. Yep, she is my quiet and calm girl. I thought her Mrs. W costume was quite fetching. (we were working off a previously designed character. Orange shirts with a big W was all Savannah let me do because she wanted to look like the real Mrs. W. Of course I had other plans but chose to submit.)

Preschool is Over for the Twins

Sniff, Sniff. . . That is pretty much how I sum it up. These past five months have been developmentally priceless for the girls. Preschool has opened up their world to the power of peers. Peer pressure is an excellent thing at this age. I know, when they get older I will want them to revert back to not caring what everyone else does.

Lila Grace and Adeline were allowed to start their "schooling" with two of the best teachers I know. It was a risk for these teachers to welcome my girls into their small and quiet class. My girls were too young and much more delayed which, in a teacher's mind, means more work. Mrs. Stueve and Mrs. Feinstein graciously accepted that challenge and I can't thank them enough. They worked tirelessly with Adeline and her sensory issues and, as previously posted, she now allows her people to paint her feet. Since the girls started half way through the year, they were very behind on the year long ABC book the class was making. Not a problem. The girls were given the time to do each letter and its corresponding activity. I couldn't be happier because this ABC book is fantastic. I can't believe I was presented a binder with photographs and 26 hands on projects.

It is hard to say goodbye to something this wonderful. The teachers and classmates were perfect for my girls. In Adeline's ABC book there was a picture of one of the boys using a toy curling iron in Adeline's hair (double click the picture below). This tells me how much she likes being at school and how much she adores her classmates. Adeline won't let me touch her hair without screaming. The girls run down the hallway when we enter the building and Adeline greets everyone with a huge smile. I will miss the routine and my "break" but most of all I will miss these wonderful experiences my girls have had.

I wanted to include the shirt the girls made for me at preschool - unfortunately I'm wearing it right now so excuse the photo. Who wouldn't want this for a mother's day gift? Another example of how wonderful their teachers are.