Congenital Heart Defect Awareness Week 2013

It's Congenital Heart Defect (CHD) Awareness Week (Feb. 7-14)...so what?  Anyone on any form of social media knows that it's always some sort of "awareness week."  This constant barrage of "awareness" seems to bring more apathy than anything else.  Too often what I see being posted on Facebook to bring awareness to any sort of cause gives very little information about the cause (thus not doing a very good job of raising any real awareness), and is generally passed over as spam.  And yet, here I am, writing about CHD Awareness, and sharing it on Facebook. 

As most people reading this already know, my daughter, Lynnea, was born with a congenital heart defect and passed away 20 months later.  This is why I feel obligated to write about heart defects during this week, but I hope that I can say something that is truly valuable rather than just adding to the awareness spam.  The problem is that, unless your baby (or a baby that you are close to) is born with a heart defect, most of what I have to say isn't going to mean much.  It doesn't really matter to most people that 1 in 100 babies is born with a CHD, or that about 10% of those born with a CHD won't live to see their first birthday.  Honestly, until I had a baby with a heart defect, facts and figures like that didn't really matter -- it's the kind of thing I would have read and thought "wow, that's kind of sad" and then moved on with my day without giving it another thought.  That type of "awareness" isn't really useful. 

So, as I was thinking about what to write to raise awareness for this particular cause, I thought about whether or not there was anything anyone could have told me before Lynnea was born that I might have cared about, or that would have mattered in the long run.  Yes, I really wish someone had told me about pulse oximetry.  Pulse oximetry is a way of detecting how much oxygen is in your blood; this sounds like some technical medical thing that is probably really complicated, but it's not -- many people have seen it on TV or experienced it in the hospital themselves -- it's that little clothespin-like thing with the red light that is stuck on the end of the finger of adults.  It doesn't hurt, it's non-invasive, and like I said, it's actually a really common thing used in adult patients.  Pulse oximetry for babies doesn't use the clothespin-like thing, instead, it is a bandaid-like thing because the clothespin thing is too big to put on a baby's finger or toe, but it works the same, and it's still painless and non-invasive (and, in case anyone is wondering, very inexpensive).  Anyway, I really, really wish that someone had told me that pulse oximetry can (and should) be used on babies in the hospital shortly after birth.  If I had known this, I could have asked for it when Lynnea looked a little blue and her breathing didn't seem quite right before we were discharged from the hospital after she was born.  I didn't know anything about pulse oximetry, so when I brought up my concerns to the nurses about her color and about her breathing, I accepted it when they said she was probably fine and that I was just worrying too much.  A simple pulse ox test would have made me feel better (or, in Lynnea's case, would have shown that something was indeed very wrong with her and she would have gotten the medical attention she needed much, much sooner).  That's the kind of awareness that would have been helpful.  There are over 40 different types of congenital heart defects, and the ones that require immediate attention after birth can nearly always be detected with pulse oximetry; not all hospitals use this basic screening on all newborns, but anyone can ask to have it done, even if it is not standard. 

While there is very little known about the causes of most CHDs, it is generally agreed upon in the medical community that early diagnosis (like with many conditions and illnesses) makes a big difference in the outcomes.  

The Homestead Act of 1862 and a Mouth full of Molars

Ashlyn had to complete a project for her school's History Fair.  The theme had to be about a Turning Point in history.  She did her project on The Homestead Act of 1862: Pioneer Life, and created a diorama that showed Almonzo and Laura Wilder's homestead claim and tree claim in South Dakota.  Her project won a blue ribbon.

Here is what she wrote for her project:
Explain why you became interested in researching your topic.
"I was interested in Laura Ingalls Wilder, and she was a pioneer girl, so I decided to pick this for my topic to learn more about pioneers."
List three things that you learned about your topic.
1. "I learned that the government said that there was free land that people could have."
2. "To get that free land, the people had to first sign the paperwork and live on it for five years and either farm on it or plant 100 trees on it, and of course, they had to build a building on it."
3. "I learned that some people left the big cities to go and get that free land."

Aiyana has also been busy lately...busy getting more teeth.  She now has four molars (that I know of...I have quit checking for new teeth because she bites really hard), which would explain why she has been so crabby the past couple of weeks. 

Happy Birthday, Aiyana!

It's hard to believe that Aiyana has been a part of our family for a whole year already.  She has grown up so fast!  In the past month she has added the words "Papa" (Grandpa), and "Nana" (Grandma) to her vocabulary and she's been trying really hard to say "ball." 

Today for her birthday she woke up and opened presents (now that she's an old pro at it after having lots of practice over the past few days) and enjoyed playing with the wrapping paper.  She had lunch with Mommy, Daddy and Ashlyn before Daddy had to leave for work.  She was unimpressed with her cupcake...I think she would have been happier if it had been chocolate cake.  Grandma and Grandpa came to take her out to dinner to her favorite restaurant, Pizza Ranch.  She rivaled Ashlyn with the amount that she ate.  Overall, she had a fun day.

Merry Christmas

We had a wonderful time celebrating Christmas together as a family this year.  The past several years Corey has had to work on Christmas Eve and Christmas Day, so for him to have both days off this year was really special.  Ashlyn enjoyed being a part of the Sunday School Christmas program at church.  Both girls enjoyed opening gifts, though it took Aiyana a while to get the hang of things.  Ashlyn was more than willing to help her out and show her how things are done.  In the end, Aiyana decided that the bubble wrap that came in some of the boxes was the best present around.

Another Month Older

Today Aiyana is 11 months old.  During this last month she has learned how to walk and is now almost up to a run.  Pretty soon she'll be chasing Ashlyn around the house.  She has also added the words "Mama," "Hi," "Wa-wa," (water) and "up" to her vocabulary.  She has decided that during some meals, baby food is unacceptable and demands to eat the same "num" as the rest of us. 

Happy Birthday, Lynnea

I admit, I never really know what to write on Lynnea's birthday, and today is no different.  She would have turned four today.  It's a hard day; on one hand, I really want to celebrate what a wonderful day it was when she was born, and how incredibly happy I am that she was a part of my life even if it was for such a short time, but on the other hand, it's impossible not to be really, really sad that today I'm not having a birthday party watching her open gifts and blow out candles on the cupcakes that we baked for her.  There's nothing that can really make this day any easier, but it is nice to remember some of the favorite moments that we had with her.  So, here's my Lynnea memory for today:

This morning when I was rocking Aiyana in the rocking chair before her morning nap, she kept leaning forward and then flinging herself backward against me.  This reminded me of when Lynnea used to do this.  We called it "Kaboom" and, I admit that it's not really one of my favorite baby games, but Lynnea thought it was a lot of fun.  I remember specifically the time after one of her heart caths when she thought it was an appropriate time to play "Kaboom."  See, after a heart cath, it is important to keep still for a few hours in order to prevent bleeding.  For Lynnea (and all babies/small children) this meant spending a few hours in the hospital crib strapped to a board to keep her from moving her legs.  Well, Lynnea hated this, and after this particular heart cath, the doctors and nurses thought that she might be happier if she were snuggling in my lap instead of strapped to the board.  I agreed that holding her might make her happier.  It did.  But it didn't keep her still.  As soon as she got out of the crib and into my arms in the rocking chair, she decided that nothing would be more fun than playing "Kaboom."  I ignored her the first few times she flung herself backward hoping that if I ignored her she would stop.  She didn't stop.  Since I didn't think this was what the doctors and nurses had in mind when the let her out of bed, I told her that she had to stop playing "Kaboom."  She reluctantly stopped and immediately found other ways to occupy herself: she set diligently to work trying to remove all of the medical equipment that was attached to her.  She removed her pulse oximeter several times (I kept putting it back on her toe, and she kept pulling it off as fast as I could put it back on), she pulled her nasal cannula out of her nose, she tried to remove her IVs and tugged desperately at the Velcro on the blood pressure cuff.  And, of course, she just laughed at me when I told her "No, no."

That's one of my favorite Lynnea memories because, despite the situation, she really was just being a typical naughty toddler.  I loved seeing her do "normal" things like that even though there was nothing normal about what was going on in her life. 

Aiyana is 10 Months Old!

Aiyana is looking and acting less like a baby and more like a toddler every day.  She easily walks around furniture and has no problem going from one piece of furniture to the next.  She also stands on her own for a little while.  She has a vocabulary of three words: "Da-da" "Num-num" and "Nigh-night."  She is especially fond of "Num-num!"  While she still eats baby food, she has decided that table foods are wonderful and enjoys eating whatever the rest of us are having whenever we are willing to share with her.  Fortunately, she has a big sister who is willing to share snacks with her whenever she asks. 

We Have a 9 Month Old

Aiyana is in a big hurry to grow up!  She can walk around furniture and she puts every little crumb she finds in her mouth.  She has eight teeth now -- the better to bite with!  We've had many conversations about whether or not it is OK to chew on socks while people are wearing them...we're not always in agreement on this one.  She has outgrown her sleep sacks, so now she gets to wear big girl pajamas.  She's not really convinced that this is an improvement, and makes it challenging to get her dressed after her nightly bath. 

The First Day of Kindergarten

Today was Ashlyn's first day of Kindergarten.  She was excited to go and had a really great day.  She made some new friends, played outside for TWO recesses (that was very exciting!), ate lunch that she brought from home, and listened when the teacher read stories.  She told me that she is really glad that she gets to go back tomorrow. 

8 Months Old Already!

Today Aiyana is 8 months old.  She's a busy girl these days.  She finally mastered crawling and has now decided that she desperately wants to walk.  She pulls herself up to standing in her crib and at the baby gate on the stairs.  She also has five teeth now and enjoys eating Cookie Crisp cereal and cut up bananas.