Congenital Heart Defect (CHD) Awareness Week

The words are never easy to hear, whether it is from a doctor trying to gently break the news at a 20 week ultrasound, or in the delivery room shortly after birth, or in a chaotic emergency room days or weeks later..."We think there is something wrong with your baby's heart."  Those words change everything.  Hopes and dreams go crashing to the floor; thoughts of the future come to a screeching halt, and the fear creeps in -- the fear that you don't want to admit aloud...the fear that you might outlive your own child.

Corey and I first heard those words in the E.R. when Lynnea was seven days old.  We knew throughout her life that there was a very real chance that we would outlive her.  I remember the first time we spoke about this to each other.  We were driving back to the hospital to be with her after my six week postpartum check up.  We desperately hoped that this fear would never become reality, but we couldn't ignore the fact that her heart defect meant that there was a very real chance that it would.

That's what comes along with the words, "We think there is something wrong with your baby's heart."  One out of every hundred babies is born with a congenital heart defect.  This means that in the U.S. approximately 40,000 sets of parents have to hear those words, and 4,000 of those families will never get to have a birthday party for their babies.  Congenital heart defects are the most common type of birth defect worldwide, and the leading cause of defect-related infant deaths.   Sometimes these defects are diagnosed prenatally, sometimes they are missed.  Some require one open heart surgery; some require several; some require only close monitoring by a cardiologist.  All of them are very scary for the parents.

February 7-14 is CHD Awareness Week.  Awareness brings funding (nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects), which is an important part of finding treatments for these heart conditions, but awareness isn't just about raising money.  It is also a way of increasing support for families that are faced with devastating news and challenging situations.

Awareness is also about detecting and diagnosing congenital heart defects earlier, rather than later.  When babies are born, there is a whole panel of things that make up standard newborn screening -- their hearing is checked, a heel-prick is done to check for PKU, etc.  Some of these tests, like the hearing test, are non-invasive and painless for the baby, while others, like the heel-prick hurt.  Screening for heart defects can be done with a simple non-invasive test (pulse oximetry) that causes no harm or pain to the baby.  Currently, this is not standard practice at every hospital in the U.S.  There is work being done on the governmental level to make this screening a standard part of newborn care, but changing policies takes time.  For us, Lynnea's defect was not diagnosed prenatally, or in the hospital after birth; in fact, we were sent home with her believing that we had a perfectly healthy newborn.  If I had known about pulse oximetry at the time, I would have asked for it, and her condition would have been diagnosed much sooner, saving us from the emotional mayhem of that night in the emergency room.  This is why awareness is so important.  Awareness can save lives.

One Month Old

Aiyana is now one month old.  This past month has flown by and it is hard to believe that she has been with us for this long already.  We are still waiting for her to give us that first "real" smile, but I have a feeling we won't have to wait too much longer.  Ashlyn continues to be a super-star helper big sister.  She's getting the hang of feeding Aiyana with a bottle without letting Aiyana swallow too much air and without squishing Aiyana's nose with the bottle (who knew that feeding a baby was really harder than it looks?).  We are all happy to have Aiyana in our lives.

Celebrating Aiyana's Baptism

After experiencing everything that we went through with Lynnea, especially her baptism in the emergency room when she was seven days old, we decided not to wait very long to have Aiyana baptized. We had a private baptism for her at church on Friday, December 30, when she was three days old.  Last Sunday we celebrated her baptism by having it publicly recognized during the church service, and we named her sponsors at that time. 

Welcome, Aiyana Faith Callison

Aiyana at the hospital.

Ashlyn helps feed Aiyana

Already one week old!

Ashlyn's picture of her new sister

Ashlyn gives Aiyana kisses

Ashlyn's picture of Daddy and Aiyana

On Tuesday, December 27, 2011, at 4:38pm we welcomed Aiyana Faith into our family.  She was 6lbs. 14oz. and 19.5in.  Most importantly, so far she seems completely healthy.  She is already 8 days old...this past week has flown by and it seems as though she has always been a part of our family.  I admit that I've practically been holding my breath since she was born in fear that something was wrong with her -- when Lynnea was born we had her at home with us for seven days before it became obvious that she was very, very sick, and the fear that we could be blindsided like that again is still something that lingers on.  But, like I said, so far Aiyana seems to be completely healthy; the only issue we've run into is that she seems to be lactose intolerant, so we've decided to bottle-feed this time around.

Ashlyn was very excited when she heard the news that her little sister had arrived, and has been an amazing big sister.  She loves to help out in any way that she can (throwing away diapers, getting blankets, picking out clothing, feeding, and burping...).  She also enjoys taking lots and lots of pictures of her new baby sister with the camera that she got for Christmas. 

A Trip to the Children's Museum

Last week we went to the Minnesota Children's Museum for a HopeKids event.  Ashlyn was very excited about this -- she remembers when we went two years ago with Lynnea and has been asking to go there again ever since (we didn't make it last year because Corey had to work).  The first thing she wanted to do when we arrived was go and play in the bubbles, just like she had with Lynnea.  After that she had a fun time exploring most of the other exhibits in the museum.  It was fun to watch her get so excited, and we had a great evening out as a family.

Things Ashlyn is Thankful For...

Over the past week Ashlyn and I have had several conversations about things that she is thankful for.  Here is the list of things that she came up with:
She is thankful for her swimming pool, her pink car, Daddy -- especially when he helps her drive her pink car, her backyard, trees -- because they give her shade and help keep the air clean, Mommy, and Baby.

Lynnea's Birthday

Lynnea would have been three years old today.  In order to mark this occasion, Ashlyn and I baked cupcakes, just as we did last year.  I think this will be our yearly tradition. 

I thought that Lynnea's birthday this year would be easier than it was last year when her death was still so fresh in our minds, but this year wasn't really any easier.  This year the reality hit that every year her birthday will come, and every year she will not be here to celebrate it with us. 

We spent time today remembering her and some of the best moments that we had here with her.  While remembering her, of course, it is always impossible to only remember the best times; all of the suffering that she went through cannot be forgotten.  The comfort still comes from knowing that, this year for her birthday (and everyday), she doesn't have to hurt or suffer at all because she is in heaven where there are no more tears and no more owies.  I am happy that she gets to spend her birthdays in such a wonderful place, even though I miss her so much.

Fetal Echo

Today we went down to the U of M for a fetal echocardiogram.  We brought Ashlyn with us because she really wanted to see the new hospital.  One of our favorite echo techs did the scan for us.  The baby's heart looks perfect (and she has a beautiful aortic arch).  Ashlyn was very well behaved during the scan, and seemed to like getting to see the baby's heart beating.  Ashlyn also enjoyed playing in the waiting area and in the hospital lobby for a while. 

First Day of Preschool

Today Ashlyn started preschool.  She made a necklace out of Froot Loops, and said that there were lots of fun toys to play with.  She is looking forward to going back again next week.

A Day at the State Fair

On Monday, we spent the day at the State Fair.  The weather was beautiful, and it wasn't overly crowded, so it was a great day to go.  We didn't try any new foods this year, but instead stuck to ones that we've liked in the past.  This year Ashlyn enjoyed the deep fried alligator much more than she did last year (she ate nearly the whole batch without saving much for me or Corey).  She had fun going down the giant slide with Daddy, and riding the Merry-Go-Round with Grandpa.  She was a good little farm worker and appreciated her hard earned apple.  At the end of our day, we stopped to watch a show on one of the free stages, and Ashlyn was very excited when all of the kids in the audience were invited up on stage to dance at the end of the show.