Happy 4th Heart-iversary AnnaSophia!

Today marks the 4th anniversary of AnnaSophia's heart transplant.  It has been a journey full of ups and downs, scary times and triumphs.  Today, I feel very blessed.  I look at my precious daughter, and I am so extremely grateful for our donor family, the Hibberts.  This has been a very bittersweet day.  When I look at AnnaSophia, I feel sweet joy, thankfulness and hope, but there is an ache deep in my heart for Mason's family.  I cannot imagine what it is like to carry on daily without your child...

I know what it's like to live with a critically ill child.  I know what it's like to have a doctor tell you that your child only has two months to live and the wait for a heart is six to nine months long.  I know what it's like to wonder if today is the day that will be your child's last breath.  I know what it's like to mentally plan your child's funeral each day, not knowing how much time you will have left.  But nothing compares to the reality of waking up each day and realizing that your child is not there with you.

What is so amazing to me is that through the nightmare of losing their son, the Hibbert family decided quickly and without hesitation that they would donate their son's organs.  Dave said that the decision was "easy".  Through Mason's death, they would give others a gift of life.

Dave and Char, you are my heroes.

Mason, I think of you daily.  When I walk into my daughter's room in the morning, I see your beautiful, smiling face.

If you have never considered donating your organs, please think about how you can give others the gift of life.  Click here to find out how to register in your state.

AnnaSophia is so full of life.  She loves going to the park.  She wants to constantly keep up with her older brother and sister, running after them, laughing, jumping and dancing.  She is an amazing little girl, who wants so desperately to live life to the fullest.

Thank you Dave and Char, thank you Denver Children's Hospital, thank you to all of AnnaSophia's doctors and nurses, thank you Jilayne, thank you to all who prayed for AnnaSophia, thank you to those of you who lent a shoulder to rest on and cry on.  I wouldn't have my daughter today if it weren't for all of you.

Blessings...

MRI Results

I am very overdue on posting this, and I do apologize.  Life continues to move quickly.  I refer to this as "Life    moving at the speed of life".

MRI day started in the wee hours of the morning, with us arriving at Denver Children's hospital at 6am.  AnnaSophia is always excited to go there.  She feels quite at home.  This phenomenon only occurs in children who have spent a lot of time at the hospital.  She loves her doctors and nurses, and so far has not rebelled against her required visits.

AnnaSophia did experience a little anxiety after the anesthesiologist visited us.  She really wasn't too keen on putting the oxygen mask on, even after we "colored" it with some yummy smelling Fruit Smackers.  The doctor really wanted to make this a better experience for all of us from the last time she underwent anesthesia.  (Quick reminder: She experienced what is called Emergence Delirium while recovering from her heart cath.  Basically, she was extremely agitated, angry and out of control.)

Kyle and AnnaSophia

The doctor ordered some oral Versed. The difficult part was getting the medication in AnnaSophia.  It took a few adults holding her head still while shooting the drug into her mouth with an oral syringe.  She was not happy with me, but once the Versed started to take effect, she was a different child.  This drug is amazing!  She was relaxed and happy...and the best part is that she would not remember a thing.  Bonus!


I was able to carry her back to the MRI room, and be with her while she went under.  No matter how many times I've watched this, no matter how much I understand all of the technical information, this is still hard for me.  Watching my child become limp and fall asleep while under the effects of these drugs is still hard.  I don't even know why.  Maybe it's because I'm handing complete responsibility over to a team of doctors and nurses.  She's out of my care at that point.  Maybe it's because it brings back hard memories of her CHD (congenital heart defect) journey.  The open heart surgeries, the heart failure, the time spent in the CICU, the time she went into cardiac arrest after transplant, and the list goes on.

However difficult it is, I never show it.  I'm strong for her.  I smile and tell her she's doing great.  I kiss her, and tell her I love her.  When I turn around to walk out of the room, the tears fall...quietly...and just a few.  I always take a deep breathe and know that she is in God's hands.

Sleeping off the anesthesia

The MRI took about two hours to complete, and AnnaSophia came out of the anesthesia beautifully.  She was actually quite entertaining.  To put it plainly, it was like she was drunk as a skunk.  A happy drunk.  She was high as a kite, smiling, talking and cooperative.  At that point, I could've hugged the anesthesiologist!  What a difference from last time!

IV is out and she is a happy girl!

As she was recovering, the radiologist came in to speak with us.  The most amazing thing happened.  He reported that her heart looked great!  I couldn't understand how we had gone from, "it looks like there is a mass on her heart" to "there is no mass and her heart looks great", but the bottom line is, I'll take it!

The doctor said that her vessels looked good, her heart function looked good, and his best guess is that the view of the ultrasound may have picked up part of her liver making it look like there was a mass on her heart.  I felt like a huge worry had been lifted from me.  I was thanking God at that moment that she got a clean bill of health.

The reality is that at some point, AnnaSophia will get sick.  Her heart will have some problems.  She could reject.  She could developed transplant coronary artery disease.  She could develop heart failure.  At some point, she WILL need another heart transplant.

But for now, she is great...and I'm good with that.  I have been blessed with more time with my child, living life like any other child (except for the fact that we wash hands like doctors preparing for surgery, and she takes immune suppression medication).  I have more days to love my children and make memories with them.

Still feeling happy and on our way home

Thank you for everyone who prayed for her and wished us well.  All I have to say is that I feel truly blessed.

Congenital Heart Defect (CHD) Awareness Week 2012

The problem with having two blogs is that sometimes I'm conflicted about which blog to write on.  This was a tough one.  A lot of people check AnnaSophia's blog for updates on how she's doing.  I've used it to raise awareness about congenital heart defects (CHDs) as well.  I just wrote a new post about Congenital Heart Defect Awareness Week (February 7-14, 2012).  After much thought, I decided to post it to Rabbit Trails and Detours.

The post is all about CHDs, so why did I post it there?  Because Rabbit Trails and Detours is a forum for my mental meanderings and the "what's-going-on-in-my-life" updates.  I realize that I haven't posted much--on either blog.  It's partly because I've been so busy, but it's also partly because I needed a period of time to keep some things to myself.  But, CHD Week is a big part of my life.  This is our second year planning out events and raising awareness in our local community, so I felt like RT&D was the best place to put it.

The problem with a blog is that I feel the need to write and write and write....

The great thing about social media like Facebook is that a person can post a sentence.  It's quick and easy.  For whatever reason, a blog unleashes sentence after sentence.  So before I carry on too much, click here to read all about CHD Week in Colorado Springs...the why, the what and the where.

Blessings.

New Heart Heroes Location

The American Heart Association's Heart Heroes Gallery is officially up at the East Library in Colorado Springs.  Please stop by and visit these wonderful photos of some of the local kids in our community who were born with congenital heart defects.  Thank you to Beth for taking this picture of our gallery moving team today.  Tea and AnnaSophia, who are featured in the gallery, helped too.  Our kids are such good sports, accompanying us while moving the gallery and educating the public.  Saturday, January 8th, some of our volunteers will be at the library talking to people about CHDs, childhood obesity and improving our cardiovascular health.

The Children in Review

I have defaulted...big time.  I've been busy, overwhelmed and trying to figure out this whole single-mom-parenting thing.  I haven't posted updates on AnnaSophia's blog like I should have.  So, I sit here at 10:23pm, with the children tucked in their beds, me alone in mine, and I have been inspired to write an update on my children.  This is a good way to end 2010, reflecting on my reasons for living.

I'll start with AnnaSophia, since this blog is named after her.  She was the inspiration for starting this blog.  Born with severe heart defects, whisked away unexpectedly to Denver Children's Hospital when she was 9 days old, this blog was designed to keep friends and family updated on her medical condition.  What a wild ride!!! Open heart surgery at 11 days old, chest closed at 13 days old, tachycardia, transfusions, medications, heart failure, PICC lines, transplant, cardiac arrest, rejection, infections, chemo, heart caths.  This was a big part of her life.  This defined the early years of her life, but it wasn't exclusively who she was or is. 

She is AnnaSophia, a bright and shining star.

AnnaSophia smiles a lot.  She gives the biggest, squeeziest hugs and kisses EVER.  She loves to "nuggle" with me.  She loves her family, especially her brother and sister.  She loves princesses, and thinks she is one too.  She loves animals, especially dogs.  She wants to visit Cinderella's castle one day.  (Baby, I think you will, so hold onto that dream.)  If you ask her where her heart is, she points to her chest.  When I ask her who's heart is in her chest, she replies, "Mason's heart" with a sweet, big smile and both of her hands over her chest.  God love her!!!  She brings such joy to my life!  She is truly a miracle, and I feel so blessed to have my baby with me each day.

Emily is my super-sensitive, beautiful girl.  She is 10 years old now.  She is on her way to becoming a young lady.  She can't wait for the day that she is old enough to babysit AnnaSophia.  Emily loves her siblings and me as well.  She has loved horses since she was old enough to talk.   She loves dogs, especially Golden Retrievers and hopes to have another one sometime.  She is my artist.  She has amazing talent, and her drawings take my breath away.  This year, Christmas was especially stressful for the children, as their dad and I are not together.  I found her outside with her cousins, holding her sketch book and drawing nature pictures.  To watch her was one of those precious gems-of-a-moment that will be forever burned in my mind.  I love every second that my beautiful girl and I can share.

Ethan is growing into an amazing young man.  I don't use the term "man" lightly.  He is tall and handsome.  Despite his Asperger's Syndrome and challenges, he is amazing.  If I could find a man half as good as my son, I would be blessed.  He is smart, works hard, is devoted, loves his family and has a great sense of humor.  Yes, he teases his sisters A LOT.  I remind myself that he is a boy and a brother.  It's what they do...right?  He just needs someone to give it back to him big time.  He has an amazing sense of right and wrong.  He knows what kind of man he wants to be and seeks out inspiring examples of amazing men to emulate.  God love him!!!  He made the honor roll at school this year, and wowed my socks off by saying that math is his favorite subject.  I think I see an engineer in the making.

Life has been hard this year.  I don't know what the future holds for us.  This is the most uncertain year I have ever faced, but there are certain things that I cling to.  I know without a doubt that my children love me.  They are my reason for waking every day.  I strive to be a better person and provide a good life for them.  I work to raise awareness about Congenital Heart Defects to save my daughter's life.  Every motivation, everything that I do, is for them.  One day life will settle down and become less stressful.  Until then, I hug on my children daily and thank God for the precious gifts that He's given me.  I pray that 2011 will bring peace, love and stability to our lives.  Until that happens, we press on with hope, and I pray that the Lord will continue to bless us and walk with us.

Blessings to you.

KKTV 11 Interview for the Heart Heroes Gallery

At the unveiling of the Heart Heroes gallery on Monday night, our local KKTV 11 news channel came to the Antler's Hotel and gave us some wonderful publicity.  I post this with some trepidation, because I don't like myself on camera.  Thankfully, my part is ever so small (blink and you miss me--and that's a good thing).  Little Thad's picture steals the show.  He has the brightest smile and biggest blue eyes.  AnnaSophia's picture makes the cut too with her big big eyes and long lashes.  Click here to watch the clip.  Thank you KKTV 11 for helping us raise awareness in our community about congenital heart defects.

Heart Heroes Gallery Unveiling

The American Heart Association's Heart Heroes Gallery will be unveiled on Monday, November 29th at the Antler's Hotel at 4 S. Cascade Avenue, Colorado Springs, CO 80903 in downtown Colorado Springs from 4:30 to 6pm.  This event is free and open to the public, and I encourage everyone to attend. 

The photos are absolutely beautiful!  I know each and everyone of these children, and they are truly inspiring.  These are children who have battled and continue to battle congenital heart disease.  The amazing thing is that they do so with bright smiles, infectious laughter and amazing bravery.  Looking at these children, no one would know what they have dealt with or continue to deal with each day.  Some of these children may have physical limitations, but they don't let it keep them down. 

Life is not about what they can't do...it's about what they can do.

Sometimes Life Takes a Detour

I know that this post comes right on the heels of my post about inspiration.  I've debated many times on how to share the changes in our family, and the words have not come easily.  It's a hard pill to swallow, especially for me.

After 15 and 1/2 years of marriage, Steve and I are divorcing.

I was warned when going through the transplant process that the divorce rate among couples with critically ill children is about 75%, but as always, I tend to be an optimist.  I really never thought that would be us.  Can having a critically ill child cause divorce?  Maybe, but I tend to think that the high divorce rate is because stress maximizes problems that were already there.

Being the left-brained nerd that I am, I turned to research to help me make sense of things.  I don't know if it necessarily helped, other than to provide comfort food for that left side of my brain.  I was shocked to find out that the Evangelical Christian community has the highest divorce rate among all of the faiths.  Even the atheists fair better in marriage statistics.  Why???  What is going on here?

The answer is:  I don't know.  Maybe I need to do more research. 

That leads me to Rabbit Trails and Detours, my new blog.  The one thing I love to do is write.  It's therapeutic.  I love words.  As my sister often says, "Mary likes big words."  This is where the nerd part comes in again.  It's not that my goal is to set myself far apart from others or make people uncomfortable.  It's just that sometimes that left side of my brain gets excited and can't help spewing research, little known facts and big words.  I will try to keep this to a minimum.

AnnaSophia's blog will continue, but I realized that the focus of her blog is updates on the children, Congenital Heart Defect (CHD) awareness and inspiration as we walk our journey of medical challenges.  Rabbit Trails and Detours provides a forum for my mental meanderings that I so often find my brain taking. 

The reality is that every person's life journey takes detours.  There is not one person I've met who can say that their life has turned out EXACTLY the way they imagined it.  Maybe the destination is the same, but the path taken to get there may not be what was originally imagined. 

If God had sat me down and told me, "You will have three children.  Your babies will be sick.  The first will be on the Autism spectrum, the second will have reflux, and the third will have a broken heart.  You will be raising them by yourself.  You will lean on Me for everything, and your faith and trust in Me will grow.  I will be here for all of your needs." 

I would have most  likely said, "Thanks God, but that doesn't sound like fun.  Can I have the easy, fun life instead?  I'm not strong enough for that, and that life scares me."

I've imagined God's response to me many times.  I can't directly speak for Him, but I know without a doubt that He is here, He is real, and He is for us--not just my family, but anyone who seeks Him. 

Without question, life is changing for all of us.  I am walking down a path that I never thought I would lay a foot on.  I have worked through every emotion from shock and sadness to anger and embarrassment. I am under such a tremendous amount of stress right now, and there have been times where it was painful to take each breath.  I can honestly say that I have more good days than bad now. 

As painful as this time has been for myself, it has been a terrifying time for my children.  I'm usually able to keep them smiling, and I work very hard to make them feel loved and secure.  I don't want them to ever think that this was their fault.  One of the lessons they have unfortunately learned is that you cannot control what others do--you can only control your reaction to it, and trust in God.

One thing is certain, I feel God's presence as I walk this path.  I have felt as though He has been a step ahead of the children and me, taking care of us.  The Lord has put amazing people in my life during this time, and I feel very thankful for my friends' and family's support.  I don't know what His plan is for my children and me, but I hope that our hearts are healed and that love and joy will always be present in our home.