One Year Ago Today

Every time I have started this post I have spent most of the time crying.  One year ago today I handed my beautiful daughter over to the surgeons to 'fix' her heart.  Just remembering the day of her Norwood scares me and brings up emotions so raw that it is hard to describe.  It is a day that will forever be etched in my mind and one that I remember all the time with mixed emotions.  I remember the feeling of being in PICU while the doctors and nurses were describing everything.  I wasn't really thinking about what was going to happen...I was holding my daughter in my arms and crying like I have never cried before.  I was praying to God like I had never prayed before.  I know people were talking, but I heard nothing...I was lost in a world that belonged to myself, my husband, and Hope.  I told Hope to fight and be strong.  I prayed to God that he would hold Hope in his arms and help her fight through the surgery.  Anyone that has had to hand their little ones over to surgeons knows the emotions I was going through.  They know the feelings...the raw emotion.  If you have not had to do this...I doubt I have described it and all the feelings that goes with it.  It is unreal and something I know I will have to do again...and I hate to think about that at all.

This is what Hope looked like one year ago today.  It is a picture that will forever remain in my head and I hate thinking that any other parent would have to see their sweet little baby so puffy and hooked up to so many machines. 

Hope was in surgery for over 8 hours and the day went by so slowly.  Our family spent the day in the Ronald McDonald room at the Clinic with us.  The boys came up and played and it took my mind off everything for about a second.  The hourly phone calls were heartwrenching.  They told me what was happening with my little girl and as much as I knew it was necessary...I was so scared and worried.  I waited for the calls and then when the phone rang, my stomach would turn and I would feel sick.  The whole day was like that...a few minutes of relief after the call, 50 minutes of worrying, and 5 minutes of being on the phone and hearing what was happening.

It was such a relief when we were able to see her after surgery.  I don't think anything could have really prepared us or our family for what she would look like.  I have seen men cry that I never thought would cry in public.  These are manly men...the ones brought up in an age where men DO NOT cry in public.  Those images will stay with me forever. 

The above pictures are the ones I cherish...Hope growing up.  She is AMAZING!  You would never know by looking at her that she has gone through 2 open heart surgeries and 2 heart caths.  She is and will always be my HERO!

Heart Families

The heart world is big and small.  I found out after Hope was born that there is a whole community of families that have been through what we were starting.  It was a relief and also a very sad lesson to be learned.  I have witnessed much heartache and have celebrated so much in this past year.  I have met families that will remain friends forever because we share a bond in our children.  I have 'met' families and older children/adults that were born with CHDs online that I may never meet in person (although I really, really want to).  Before Hope was born, I lived like so many others...in a world where CHDs were basically unknown or relatively easy to fix.  I have learned more in this year than I did in my 40 years years of living.  I thank those that have come before me...especially the parents that went through this journey when there was no Internet and probably very little support. 

Now, there are a few families that are starting this journey and need your prayers.  Ewan was born on September 18th with Tetralogy of Fallot.  He has been through so much in such a few short days and is now on ECMO.  Please send up prayers for this little guy.  He is doing much better, but could always use the prayers and his parents have some specific prayers on their blog.  Joshua could also use your prayers today.  He is getting ready to head back to the OR for another surgery...this time to either modify or slow his shunt.  His parents are wonderful and have been through so much with Joshua since he was born.  He has HLHS just like Hope and we all know how hard these months are after the Norwood.  Please send up extra prayers for him today.  And a good one...please help Olivia's family celebrate her 6 month birthday.  Olivia has HLHS and I remember the 6 month birthday...what a wonderful feeling and celebration.  Olivia has already had her Norwood and Glenn...all before her 6 month birthday...AMAZING.  Finally, a little closer to home.  Logan was born with Heterotaxy (single ventricle, but a lot more) and he and his family actually live pretty close to us...we will meet in person someday soon.  Logan will be heading to CHOP (Children's Hospital of Philadelphia) pretty soon with his family to have the Glenn and fix some other stuff (see...I don't know a whole lot about this heart stuff).  He has been doing really good at home and getting lots of love from his family and now they are all facing being away from home and Logan having his first open heart surgery.  Please keep them in your thoughts and prayers as they start on yet another journey.

Children's Heart Foundation Family Fun Day

The Children's Heart Foundation Family Fun Day was held on September 18th at the Cuyahoga County Fairgrounds from Noon until 5pm.

It was standing room for the Jungle Bob show at Noon.

Jungle Bob brings great animals and puts on a great show.  The kids get to touch and see animals they normally wouldn't have a chance to see.

After Jungle Bob, Joe performed a wonderful magic show for all the kids...and their parents too.

Everyone had a great time on the inflatable's.  We had something for everything...even the older kids enjoyed the human foosball table!

Most kids spent the day on this bouncer and seemed to really love it.

Although...a lot of kids loved being able to race each other through the obstacle course.  We even had some older kids (adults) race each other through the course.

Inside we had a huge table filled with many wonderful donations available for raffle.  We received so many donations and are so thankful to all of the companies for their willingness to donate their wonderful products and services for a great cause.

We also had some local vendors and school systems inside to sell their stuff and to enjoy the day.  They were wonderful and I can't wait to try everything.

Dora and Elmo made an appearance and all the children had a great time.

Buzz visited as well!

The local fire departments sent some trucks up to let the kids take a look around and pose with their fire hats.

Our big surprise was LifeFlight.  We were able to get them to land on the track at the fairgrounds.  Sadly, they were able to land and then got an emergency call, so we were not able to go and check out the helicopter.  I still liked it landing (and knowing it was for the event and not a real emergency).