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Why March?

It is already March for Babies week! According to their website there will be over 7 million people participating or donating across the country. This Saturday we will be there with our matching t-shirts marching for Team Noah! Even my grandparents are going to come. How many kids can say their great-grandparents did that? They are pretty cool! :)
I already mentioned how March of Dimes research led to surfactant therapy, which Noah recieved multiple times.The other main result March of Dimes claims for their research is nitric oxide therapy. Nitric oxide is naturally produced by the body and it is sometimes given to help expand the blood vessels in a babies lungs and is thought to help prevent both lung and brain defects.
Thankfully this is something Noah did not have to experience. And if I am remembering right, it is a big and scary looking machine. There was a baby next to us that was on it for awhile. Of course we couldn't ask about that particular baby, but we did ask about the machine, because it was big and scary. (I thought I remember the answer being that it was nitric oxide, but after reading the descriptions on the March of Dimes site I admit I'm not 100% sure. Keep reading though; I have a point.)
I didn't really connect too many dots then, but one day the big machine and that baby weren't there anymore. It is possible that he got moved to a different pod. But it is also possible that a mother had to say goodbye to her baby there in that little NICU pod-- without ever being able to take him home, without ever being able to nurse him, without ever being able to rock him to sleep in his new nursery, without ever being able to show him to friends and family.
Not every baby gets to go home. Not every story ends with "you can't even tell he was ever in the NICU."
And that is why March.

10 things I learned on vacation

Last week we went on a mini-vacation to Duluth. Here are some things I learned: 1. March/April is a good time to go on vacation because you can get good deals on hotels. We got to stay in a very nice hotel for a nice price.

2. It is a good idea to get there right at check-in time. Our room wasn't ready yet so they put us in a lakeside suite. Score.

3. Noah likes to swim. This was his first time trying out a pool and he did great! He wasn't too sure at first, but then he decided it was lots of fun.

4. Noah likes the aquarium. We went to the Great Lakes Aquarium and had a great time. He liked looking at and pointing at all the fishies.

5. Sting rays are not slimy. They have a de-stinged sting ray that you can touch. Corey and I are both kind of freaked out by stingrays, but we did it. Go us.

6. Baked potato pizza sounds really weird but tastes really yummy. We had a pizza party in our hotel room and that is what we got. It had mashed potatoes instead of sauce with broccoli and tomatoes and cheese and bacon with sour cream to dip it in. All three of us approved.

7. You know those kleenex boxes that are mounted into the cabinets? Pretty much the coolest toy ever.

8. Vacations with toddlers should come with an extra vacation day for Mommy and Daddy. Noah was very kind and pointed out all the aspects of the hotel room that needed to be toddler-proofed. And he did NOT want to go to sleep. Um, Mom and Dad don't have to go to sleep, so why should I? Eventually we just all went to bed around 8:45. (His usual bedtime is 7:00.)

9. Noah doesn't do that great in really crowded places. We decided to go to a popular restaurant right at lunch time on a Friday. Bad idea. He didn't get fussy and cry, but he was too distracted to eat and decided he had to try and yell louder than all the noise...

10. Family vacations are very good for you. (I already knew that one but it was a good reminder.)

Mr. Clean

If you haven't heard it by now, Noah is kind of obsessed with cleaning instruments, particularly vacuums. All sizes, all volumes. (Mops and brooms are cool too, but not as much because they don't make noise.) He "sings" with it, almost always on key, and usually signs more and fusses when we are done. He knows that they are kept in our laundry/storage room, and if he hears that door open he makes a beeline for his beloved vacuums!Any theories on why he has this obsession? I would like to say because of his mother's excellent housekeeping skills, but that just isn't the case. I actually clean more now because he likes it so much. Thanks, buddy. Maybe the noise reminds him of NICU machines? Or he remembers seeing the cleaning lady go by his pod everyday? I don't know. It is pretty funny.

He is also an excellent little helper with other things, like emptying the dishwasher. He helps me every day. Not something I started intentionally, he just comes everywhere with me and is interested in everything I do and one day grabbed a spoon and handed to me and that was that. He is SO proud of himself and it is so cute. Just another reminder that I am being very closely watched and teaching through it whether I like it or not!

He also helps hand me with laundry and puts things away in drawers. And loves to play with the knobs on the washing machine. He is definitely a little boy and is in the "I must find out how everything works" stage.

Don't let those things fool you completely though. He is a one-year old boy and generally leaves a trail like this behind him:

I embrace these ordinary things in my day and treasure these moments. They are already going by quickly, as my little boy is growing and growing.

See:

March of Dimes

It's March of Dimes time!!

It's one thing to see all the signs with cute babies on them and those little diapers posted at K-Mart and think they look pretty small, it's another to know that they were too big for your own child when he was born. So yes, I intend to participate in the March with enthusiasm.
There is a badge to the left that you can click on to donate. And if you are in the area and want to walk with us, you can join Team Noah!

If you want to know a specific way the March of Dimes helped save Noah's life, here you go:
One of the results from their research is the use of surfactant. My NICU family guide gives this definition: "A natural soapy substance found in mature lungs. It acts as a lubricant in the lungs to help them expand more easily and to keep the air sacs from collapsing. Artificial surfactant is occasionaly given to premature babies until they are able to make their own." The lungs are one of the biggest concerns for a preemie. Think of everything they are asked to do that they aren't supposed to have to do for months. Noah definitely had his issues and although memories from those first weeks are kind of fuzzy, I know that he was given multiple doses of surfactant. Who knew I would ever be thankful that someone created an artificial soapy substance to put in my child's lungs?

Think about it.
And expect more bugging from me.
It matters.

Adjusted one-year

"Happy adjusted birthday to you; happy adjusted birthday to you; happy adjusted birthday dear Noah....happy adjusted birthday to you!!" It's kind of a mouthful. And kind of weird. But if Noah would have been born exactly on his due date, yesterday would have been his birthday.

Since I haven't done a good ol' update in a while, here you go.

At adjusted one year/15 months Noah:

• Weighs 19 1/2 pounds and is 28 1/2 inches long (That is more than 10 times his birthweight.)
• Has 6 teeth
  
• Cruises on furniture and loves pushing his walking toys (He knows it is a big deal because he always makes sure someone is watching and usually waves.)


• Can stand on his own for a few seconds (I think he is strong enough to do more, but when he realizes he isn't holding on to something he gets nervous and sits down.)
• Signs "more" A LOT. It is a very useful sign. (Although sometimes we have no idea what he wants more of.) For example, if he wants to go outside he gets his snowsuit and signs it and if he wants to nurse he gets the Boppy and signs it.
• Also signs "all done," "eat" and "music," but not as much.
• LOVES music. He dances, sings, claps, or a combination whenever he hears any. Some of his favorites are: Kickin' It Old School and This Is My Father's World by GoFish, 3 Little Monkeys by Daddy, The B-I-B-L-E and Pony Macaroni by Mommy, the Full House theme song, and anything on Seeds Family Worship (If you have kids you must check this out. Awesome.)
• Is obsessed with vacuums.


• Still loves to be outside, even when it is freezing.


• Lucy is his BFF and he is usually very good with her. He knows how to play with her using her toys.
  


• Still shares everything, even with other kids.
• Absolutely loves to play with my hair. And usually suck on his thumb at the same time.


• Has figured out things like: how to push buttons (i.e. TV) with his pointer finger, how to open the lid of and flush the toilet, how to open most drawers and door (including some "childproof" ones, and how to go down stairs.
• Here are some more examples why I am not at all concerned about his mental development: He turns on the TV and DVD player, gets his GoFish DVD and opens it, and signs more. He has pushed a box over to get up on a chair to reach the table (the box partially collapsed and scared him so he hasn't tried again, but I know it's coming).
• Is learning so many new things and is so cute and wonderful it would take me a very long time to list it all!
  

Rare Disease Day

No, this post is not about Noah. Although we did go for the whole "rare" thing, that part of Noah's story is over. Hopefully we are done with the scary medical stuff for good. (Yes, I realize at the speed he lives life there are probably some ER visits in my future, but you know what I mean...) And although it has had a huge impact on my life, it is no longer a major part of my day to day life.
That is not how the story goes for children with rare diseases and their families. There is no end to that part of the story, only the beginning of a "new normal." Every day is greatly affected.

This is very important to me because some dear friends of ours are living just that. Their sweet daughter Calla has a chromosomal disorder called Ring 9. You want to talk about rare--there are only about 120 documented cases. Ever. This means a lot of that dreadful "wait and see" game. There are all kinds of physical and metal challenges see could face. Calla is also legally blind; she has some peripheral vision but the center of her eyes didn't develop. (If you want to know more, visit her CaringBridge site at www.caringbridge.org/visit/callalindstrom.) She is a sweet little peanut and I love her.

Calla's mommy is a fabulous writer and this is from one of her recent CaringBridge posts:
I feel like my life before Calla’s diagnosis is separated from me as though through frosted glass. In a way, her diagnosis was a new beginning for me. Everything is thrown out the window and I’m right there with Calla, learning how to live all over again.It’s incredible, really, how one small person can transform your life -- how one single moment can change your life, and the consequences of that change echo louder and louder through all the succeeding moments until all the pieces of your life are shattered by the sound.
As I cycle through my grief over and over again, I’m struggling to figure out how to reinvent myself, how to find a way to transform and adapt. Every day shapes us into who we are by quiet whispers, but the big moments... the big moments stop us in our tracks and force a loud, drastic, painful change. Those are the moments that bring out the truth in us, both good and bad.

I don't have words to follow that except to ask you to think about and pray for Calla and her family today, and remember that many families are affected by rare diseases.
Oh, and click this: (seriously, it will take half a second, you don't have to do anything else, and it donates $ to a worthy cause)


Dear Calla,
Rare can be scary and it can be lonely. But it is also beautiful and special. And that is what you are. You are very loved.
Love,
Auntie Ellie

The tag line for Rare Disease Day is: Alone we are rare. Together we are strong. I pray that all those families feel a special stregth today.