Practicing Her Nursing Skills

Since Grandma Maureen broke her leg nearly two weeks ago, Ashlyn has had the opportunity to put her skills as a nurse to the test.  She does a good job keeping Grandma occupied so she doesn't get too bored, and she is very gentle when she does her assessments of the broken leg.  She also remembers to ask Grandma if her leg hurts and offers her "I-B-Potion" (Ibuprofen) when Grandma says that her leg hurts.  Sometimes, though, she gets fed up with doing helpful little tasks like filling up Grandma's glass of water...she does it reluctantly after giving us a very frustrated sigh as though she is completely overworked. 

Little Yellow Riding Hood

Ashlyn has a habit of adding creative twists to the fairy tales and nursery rhymes that she knows, and this evening I think she came up with my favorite one yet.  After her bath every night, I wrap her up in a towel to dry her off; our towels are off-white (though, if you ask her, she'll say they're yellow), and every night when I do this, she says to me, "Mommy, I'm Little Yellow Riding Hood, who are you?"  And I reply by telling her which fairy tale or nursery rhyme character that I am and we act out an interaction between these two characters.  Well, tonight she told me who I should be (sometimes she makes "suggestions").  She wanted me to be "The Giant."  To clarify, I asked her which giant, and she explained that I should be the Giant from Jack and the Beanstalk.  I agreed to this.  Then she went on to explain, "Mommy, you're the Giant, and just so you know, you are Little Yellow Riding Hood's uncle.  That makes me your niece.  Tonight you are a nice Giant because Jack isn't around for you to get mad at, and I am here and I want to play.  Since you are a nice Giant, and you like me because I am your favorite niece, this will be fun."  So, there you have it: The Giant from Jack and the Beanstalk is actually Little Yellow Riding Hood's uncle.  (I haven't determined yet if Little Yellow Riding Hood and Little Red Riding Hood are the same person, or if they are just close relatives...I'll have to ask Ashlyn about that.)

Valentine's Day

Yesterday we celebrated Valentine's Day at home together as a family: a quiet dinner with Corey and Ashlyn, which included sparkling grape juice to make it "special."  I know, that probably doesn't sound all that exciting, or romantic, and, I guess on the surface it wasn't.  But, looking back at how I spent Valentine's Day the past two years -- in the hospital with Lynnea in rough shape (last year she was 6 days post-op and they still hadn't managed to get her chest closed yet...) -- this peaceful day together at home was special.  Ashlyn was full of "I love you" statements all day long coupled with lots of spontaneous hugs.  She was excited about the red stuffed animal that Corey had picked out for her, and happily gave me and Corey gifts that she had helped pick out.  Overall, it was a very nice Valentine's Day.

1 in 100

Throughout Lynnea's battle with hypoplastic left heart syndrome, I wrote about what she was going through, giving a glimpse into what it is like to have a child with a congenital heart defect.  Along the way, I met and became friends with many other families faced with the same struggle that we were going through with Lynnea because, unfortunately, "heart babies" are all too common.  With Lynnea, we were not lucky enough to have her heart defect diagnosed before she was born, or even within the first 24 hours of life when the first signs and symptoms began to show themselves, and I still struggle sometimes with the frustration of knowing that the simple act of putting an oximeter probe around her newborn foot for a few minutes would have alerted us and her doctor to the fact that something was very wrong, and possibly could have meant a better prognosis for her.  There are many other parents, families, and health care providers out there that are working to make pulse oximetry part of the standard newborn screening process to help diagnose congenital heart defects early on in order to give these kids the best chance possible of survival.  A family that we met in the hospital one of the times we were there with Lynnea has a website full of great information on heart defects and the importance of advocacy and awareness.
http://1in100.org/finally-ready-to-screen-for-the-most-prevalent-birth-defect/

7 Months

It has been seven months since Lynnea passed away.  Since February is American Heart Month, and Feb. 7-14 is Congenital Heart Defect Awareness week, I have decided to share some statistics about heart defects:

• Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD (almost 1% of all children born each year!).
• Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
• This year almost 40,000 babies will be born with a congenital heart defect.
• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
• In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
• From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!  

Personally, I feel that "awareness" is about more than just knowing the statistical data, but that's a good place to start.  Being aware of how many families are faced with the kinds of challenges and heartbreak that we went through with Lynnea is being aware of how many families need the same kind of loving support network that helped us get through the challenges that we were faced with.  Keep all of the other heart families in your thoughts and prayers as each of them struggle with impossible choices, long hospital stays, and all too often saying their final goodbyes to their children.