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).

First Birthday, Cardiology, New Teeth, and 16 Pounds

Hope's first birthday was the best!  We celebrated so many times and so many different ways.  She had a ton of cake and loved ever piece and bite that she had. She got to see friends and family...some she had never even met.  It is a birthday I will never forget.  So many people came to meet/see Hope at the Family Fun Day (fundraiser for The Children's Heart Foundation) and it meant the world to me that I was part of something to help raise money for a great organization.  Having family and friends there made the day all the better!

We had a cardiology visit this past week too.  After a quick weight check (yes...finally 16 pounds!) and a pulse ox of 85, we went for the echo.  Hope hates the echo.  There is no nice way to say it...she hates it.  We have done the sedated echo and while I like it better, I am not sure it is always a good thing to sedate her for an echo and Dr. Prieto doesn't like to sedate either.  So...the echo tech and I get to try and find ways to keep Hope from crying.  It gets hard and she can scream and cry like you wouldn't believe.  People in the waiting room can hear her and I am always afraid that she is going to upset the other patients. 


I have so much to write, but I am going to save my post on The Children's Heart Foundation Family Fun Day for tomorrow.  I have much to share and I can't wait to share all the pictures from our wonderful day!

Happy Birthday

WOW!!!  Today my beautiful princess turns one year old.  At 10:01 pm one year ago, Hope came into the world kicking and screaming.  She was and still is the most beautiful baby girl I have ever seen.  It amazes me all that we have been through this year.  We have been through every emotion possible and felt the hand of God so many times over the year.  I wrote the following note to Hope when she was first born and wanted to share it with everyone:

To the most beautiful baby girl,

You are my hero!  I can't begin to tell you how much you have taught me in such a short amount of time.  You have taught me to believe stronger than I have ever believed.  You have shown me God and the miracles He is able to grant.  You have filled my heart with a love so strong I thought I might burst.  You have taught me patience and understanding.  You have shown me how to stop and appreciate every single second of every single minute of every single day.  I definitely don't run through life anymore...I stop and smell the roses all the time. 

I know you will read this and so much more when you get older.  I hope you feel as blessed at your life and everything you have gone through as we feel.  I hope you feel the hand of God and know that He is watching and holding you in His light.  You are a special little girl and you are and always will be MY HERO!

I love you,

Mommy

I hope everyone that reads this will leave a message for Hope.  I plan to print them off and share them with her in her baby book.  I will also be sharing this blog with her when she gets older and I hope she will start one and share her experiences. 

September 11th

Today is filled with a lot of emotion for a lot of different reasons.  September 11th will probably be a date that everyone remembers for a very long time and it is good to remember historical events and tragedies that have changed lives forever.  In 2001 when the planes flew into the World Trade Center I was in a hotel room in Omaha, Nebraska.  I was a consultant working on a project and I was getting ready to go to work.  When they broke into the regular news with the story I didn't think too much about it.  I didn't think about terrorists or how the world would change.  I thought it was an accident and quickly jumped in the shower.  By the time I got out of the shower...they knew it was an attack. Planes had not only flown into the World Trade Center, they had hit the Pentagon and a field in Pennsylvania.  It was extremely difficult to finish getting ready and head to work.  It was the last place I wanted to be.  I traveled a lot back then and all my friends and family called, sent texts, or emails all day.  I usually didn't travel on Tuesday, so I didn't really think too much about it.  I flew to work on Monday mornings and home on Thursday night.  Surprisingly, I flew home that Thursday.  I was one of 8 people on the flight home...many people didn't think flights would be taking off or landing and many weren't.  I was lucky...I spent the weekend with family.  Although the memories are fading and I don't think about that day nearly as much now as I did back then, it is still an important day and I always take a few minutes out of my day to think about, pray for, and remember the families that lost their loved ones.

Last year on September 11th I was sitting in a hospital room in Akron.  It was so hard to be in a hospital room by myself for so much time to think.  I know I thought about the families that lost their loved ones, but I spent a lot of time thinking about how I would feel if I lost Hope.  I was worried, nervous, and extremely sad.  Being alone in the hospital is very hard for any pregnant woman, but when you are told that your baby might not survive delivery or pass away shortly after...it is unbearable. 

I am so thankful that Hope is here and growing stronger every single day.  She is a miracle and my hero.  I will pray and give thanks for so much today...and say an extra prayer for the families that lost loved ones in a terrible attack.  I hope you will pray and give thanks as well.

Remembering

A year ago today I was admitted to the hospital with low amniotic fluid.  The funny thing I will always remember is that the ultrasound technician that told me about my low fluid was also the one that delivered the news about Hope's heart and could not find her kidney.  I remember telling her when I saw that she was going to do the ultrasound that I was afraid she was going to find something wrong.  It always seemed like every time something 'bad' was found, she was the one that found it.  I was always so happy when she was not the ultrasound technician.

When I found out my fluid was low, I talked the doctors into letting me go home and spend some time with my family before getting admitted to the hospital.  I cried all the way home.  I wanted to get it out before I got home so that I could spend the time I had with my boys happy...not sad.  We spent the last few hours together having a really nice dinner and telling the boys that I would be in the hospital for a little while.  We really had to scramble because Jerry was still working.  I called my mom and asked if she could take some time off work so Jerry could save his FMLA until after Hope was born.

I find myself thinking back to my pregnancy a lot lately and as hard as it was to hear "your daughter has a problem with her heart", I am blessed every day because of her 'problem'.  I took a lot for granted with my boys and we don't take anything for granted anymore.  We cherish every single minute of every single day with our family.  We truly hope everyone does the same. 

A Few Updates

It has been a while since I have updated...I have been kind of busy and not much has been going on, so not much to blog about.  Hope and I were supposed to be on a morning show in our area yesterday, but her surgeon had an emergency, so it is being postponed.  We really wanted to spread some awareness and put in a plug for The Children's Heart Foundation Family Fun Day.  Now, we are hoping and working with them to do a show in February for CHD Awareness Week.  I am excited either way because all I really want to do is raise awareness for CHDs.

I am very sad today because I just heard that Andrew Prater (20 year old with HLHS) passed away.  It breaks my heart for his family and what they are going through today.  His mom was able to donate his organs and I know that helps.  She is aware of how much organ donation means to other families and knows that Andrew will live on with some other very happy family.  The tragedy from death to being able to help another family is amazing. 

We are heading to Michigan today for my cousin's wedding reception.  This will be our first overnight trip with Hope and I am excited and kind of nervous.  I am not real sure how well she will do sleeping somewhere other than in her own bed, but we shall see...hopefully it will be better than I am expecting.

I switched out hard drives on my laptop, so I now have to search and find my disk for my camera to upload new pictures.  I will be posting more soon because I have taken a ton and they are sitting on my camera.

This time last year I was counting down the days until Hope was born.  My induction was scheduled for the 21st and I was fairly certain Hope would be born on the 22nd.  I remember my feelings from those last couple of weeks so well and I will be sharing them with all of you in the next few days.  I am amazed at our year and I owe so many people a HUGE THANK YOU for all of the help and support we have received the past year. 

Finally...a plug for The Children's Heart Foundation Family Fun Day.  We are going to have a great time and raise awareness for congenital heart defects and hopefully a lot of money for The Children's Heart Foundation.  I hope anyone in Ohio that can make it does come.  It will be a great time for the whole family and you will be able to meet a lot of children with congenital heart defects and spend time with families that have children with congenital heart defects or that have lost their little ones.  I am already starting to think about next year and I am hoping to get some corporate sponsors and be able to do a lot of stuff for free for all heart kids.  I would love to put something together for all babies, children, and adults that were born with congenital heart defects that live in this area...sort of a reunion/meet and greet.  I know many of the hospitals in other areas do this, but I have not found anything like this in the Cleveland area.  Oh well...I dream really big.

I hope everyone enjoys their Labor Day.  We have a lot going on this weekend, but you all are in my thoughts all the time.