CHD AWARENESS WALK

Our support group, Amazing Little Hearts, hosted our first CHD Awareness Walk this year.  We had a great turn out for our first foray into this type of fundraiser.  I was busy so didn't get a ton of pics.  Thanks to Gretchen for sharing some of hers!

Tressa, the owner of Tressavent Photography, was onsite to capture some images as the walk was happening.  As she was about to leave, she asked me if I wanted her to take a picture of me and Grace together.  These are the result of that simple question.  I can not get over how she captured the sparkle in Grace's eye.  I couldn't believe how she was able to "get" Gracie's personality.  I LOVE these pictures.

This one is my absolute favorite!

THE AMAZING GRACE

Every day, I look at my child and think, "I am so lucky."  In this life that we didn't choose, we know many people who aren't so lucky.  Their children earned their angel wings much too soon.  One of these families has used their loss to do something amazing.  Chloe Duyck was born with Hypoplastic Left Heart Syndrome.  Unfortunately, she lost her battle at a very young age.  Her parents have created a foundation that is dedicated to providing funding for research.  Did you know that Congenital Heart Defects are the number one birth defect?  Did you know that the American Heart Association allocates less than one penny of every dollar donated to pediatric research?  Ridiculous, isn't it??

This is the one statistic that continually blows my mind.  

In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Yeah....let that sink in for a bit...
  
This year, I have decided to participate in a fundraiser for The Chloe Dyuck Foundation.  I really try to not ask others to give a lot of money.  But this group does so much in the way of research...and they have directly affected our families at our hospital.  

If everyone that reads my blog, receives an email, or is my FaceBook friend would donated $5...can you imagine how much money we could raise??  We would be raising this money for a wonderful cause!!  Oh...and the team that raises the most money wins a trip to Disney World.  

Would you please consider donating to this wonderful cause??

www.crowdrise.com/TheAmazingGrace

GRACE'S HEART CATH

Daddy and Lulu waiting to be called to our room

Starting to stress out a little

Waiting for the versed to kick in

Starting to feel good

Grace finally woke up when her BFF came to visit her.

Yikes!  I just realized that I never updated this site during/after Grace's heart cath.  I have become so dependent on FaceBook and it dawned on me that not everyone is on FB.  

So....Grace's cath did not turn out the way we hoped.  We got checked into the hospital and Grace was in a good mood.  She had to give blood...which was a little traumatic but she did pretty well.  We got moved into pre-op where she got her goofy juice.  She was so funny.  She kept trying to grab a wire off of her wrist and then cracking up laughing.  They kept her sedated for quite a while after the procedure which was a blessing since she had to lay flat for 6 hours.

The doctor had to go through both legs for this cath.  One leg was the tools and the other leg was the camera.  We had high hopes that this cath would be successful...but honestly...we aren't shocked that it didn't work.  The doctor told us that her normal pressure is on the low side of normal and the pressure in the baffle (placed during the last surgery) is on the high side of normal.  When they closed the hole, her body pressure dropped very low and the pressure in the baffle went up to unacceptable levels.  They had to pull out and leave things the way they are for the time being.

So where does this leave things?  We go back to see our cardiologist at the end of September.  We will know more at that time.  However, we know that they won't try again for 1-2 years until she grows some more.  She will just have to continue to self-monitor and realize that she can't do everything she wants to do.  It makes me sad because she is starting to get old enough to realize that she can't do it all...and she wants to do it all.  She is constantly saying, "I'm tired!'  She has been known to use this and "my stomach hurts" to try to get out of cleaning the playroom, but then there are the moments when she leans over and falls asleep on my legs at the loud soccer game.

MAY CARDIOLOGY APPOINTMENT

We went to see our cardiologist again this morning to discuss what we are going to do about that pesky fenestration.  Grace did so much better today with her anxiety about doctors.  While she was still silly, she did calm down and talk to Dr. Laird.  I was really proud of her.

When we arrived, she weighed 37 pounds!!  WOW!!  (She was fully clothed but I will still take it!)  She has also sprouted up to 44 inches.  Thank goodness it is summer!  Shorts and skirts are so much easier to fit around that skinny waist.  Her blood pressure looked good and her oxygen levels were 80.

Our echocardiogram went really well.  Grace watched Frozen.  She brought her doll, Lulu, to our appointment with us.  Lulu also had a great ECHO.  

Dr. Laird drew us a picture of how her heart is looking now.  She still has the trivial leakage in the mitral valve but it is absolutely nothing to be concerned about.  The heart muscle looks "good and strong."  So, what do we do about that fenestration??  (This is a hole that was placed intentionally after her last surgery.  In theory, it should have closed on it's own.)  If we close it, her oxygen levels will go up, her endurance should increase, and she should be less tired overall.  My worry has always been the damage that could be caused to other organs in her body from the lack of oxygenated blood.  Craig and I had already discussed how we felt we should proceed.  Ultimately, while we hate to put her through another procedure, we feel this is the best for Grace at this time.  She is starting to become frustrated with Bennett when he is irritated that she needs to take a rest.  She still sleeps to and from school almost every single day.  It is our hope that this will help her feel better.  

This can be done via a heart catheter...however, Dr. Laird doesn't perform these type of caths.  So, now we wait to hear back from the doctor who does.  We should have a plan by the end of the week.  

So, what will they do?  The doctor will go in through the groin and balloon the hole.  They will wait 15-20 minutes and check her oxygen levels, veinous pressures, and something else that neither one of us can remember. :)  If all is well, they will close it permanently and we will be good to go.  If her heart doesn't handle it well, then they "bail out" and we wait for her to keep growing and then try again in 1-2 years.

Lulu's heart sounded "exactly like Grace's" so she received a good check up, too.  Grace was thrilled that Dr. Laird agreed to listen to Lulu's heart.  

Gracie is pretty anxious about this procedure.  She cheered when we told her (before we talked to the doctor) that things might have changed and we might not do a cath.  However, there has been talk of her BFF coming to visit her in the hospital and she is really looking forward to that happening. 

If you are the praying type, we would certainly welcome prayers of peace for Grace.

HEART WEEK 2014

Heart Week is a very special week in our household!!  It is the time we celebrate Congenital Heart Defects!  We always have a big party with Amazing Little Hearts at the hospital.  We also try to spoil our favorite doctors and nurses.   This year, the kids and I decided to do a random act of kindness on every day of heart week.  (Thanks, Jane, for the awesome idea!!)  They had so much fun planning what we were going to do every day.  It is my greatest hope that they grow up loving to give back as much as I do!

Treats for our doctors and nurses

Bennett, Grace, and Greta delivering goodies to the hospital

Face painting is always a favorite activity

The man who has literally held my daughter's heart in his hand.....the amazing Dr. Mendeloff.  I will never begin to thank him properly.

Dr. Kathy....Dr. Mendeloff's right hand (wo)man!

Grace's heart buddy, Sarah.

I know that I took pictures of our daily acts of kindness, but I can't find them on my computer.  Grr... Here are the things I can remember that we did: breakfast burritos to my lunch buddies, bought Starbucks for car behind us, bought Chick-Fil-A for car behind us, left treats in the mailbox for our mail person, donuts to the office staff at the kids school and at my school.

DR. MENDELOFF'S 10TH ANNIVERSARY

Grace's AMAZING heart surgeon, Dr. Mendeloff, celebrated his 10 year anniversary at Medical City Children's Hospital in November.  Words will never be enough to express the gratitude I have for this man.  He has literally held my child's heart in his hands...3 times.  It blows my mind every time I think about it.

We had an informal celebration that our support group, Amazing Little Hearts, hosted.  We had lots of yummy goodies.  We presented Dr. Mendeloff with a photo book of some of the kids he has operated on in his 10 years here.  

Some of our awesome support team!

Dr. Kathy (Dr. M's right hand man) and Dr. Mendeloff with my special hearted girl

Part of the AMAZING team (photo courtesy of MCCH FB page)

The hospital also hosted a formal event that the ALH board group was invited to attend.  It was such a lovely celebration of a man who has done so much for our hospital.  It was so nice to get dressed up!

Some of the board members with our favorite surgeon

My buddy, Cindy

Here is to 10 more Dr. Mendeloff!!

CHD Awareness Week - Day 3

7 BITS OF ADVICE FOR CHD PARENTS
1.  Ask for help.  This was a hard one for me and Craig.  It is hard to ask people to help you, but necessary.

2.  Accept help that is offered.  This was even harder for both of us.  People want to help and it is okay to take them up on the offer.

3.  Join a support group.  You have to do this when you are ready.  Some are ready before others. 

4.  Ask questions!  Ask lots and lots of questions.  Make sure that you understand what is happening with your child.

5.  Speak up!  You know your child best.  Sometimes you have to follow your gut and speak up. 

6.  Appreciate your doctors, nurses, etc.  They are taking good care of your kids.

7.  Appreciate each and every day with your little one.  Some parents are not as lucky and don't get to have their kids with them.  Even when Gracie is driving me nuts, I really try to remember this. 

More CHD fun tomorrow!!