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.