AnnaSophia gets a Make-A-Wish

AnnaSophia was recently granted a Make-A-Wish!  We just returned from a 7 day trip to Orlando, Florida. Make-A-Wish is an amazing organization that grants wishes to children fighting life-threatening illnesses.  I am working on getting pictures up along with all of the details of her fairytale wish trip. 

Blessings.

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.

Patiently Waiting.....

AnnaSophia is scheduled to have an MRI of her chest tomorrow, May 8th.  Last cardiac clinic revealed some things that left the doctors with questions and me with a lump in my throat.

Let me back up a little bit.

April 3rd, AnnaSophia started to get sick.  At first, it didn't seem so bad.  She had some diarrhea, but was happy, alert and still hungry.  Well, the diarrhea progressed and then the vomiting started.  I'm sure some people would think, "What's the big deal?  Kids get sick.".  The problem is when a heart transplant kid gets sick, there are complications that other children don't have to deal with, like keeping immune suppression medication down.  Not only was she having difficulty keeping her anti-rejection medication down, but she was getting dehydrated.  Both are bad.

By Friday, I made the decision to take her into the emergency room.  There is always a mini battle in my mind as to whether to make the journey to Denver, an hour away, or take her to our local E.R.  She was so limp and sick that I thought it would be better to take her to the closer hospital.  She received good care, medication to stop the nausea and vomiting, and we were able to get her to drink fluids.  Transplant called and ordered some blood tests to check her for EBV (Ebstein Barr Virus) and CMV (Cytomeglovirus).  We also redosed her immune suppression medication in an attempt to keep her levels stable and avoid rejection, which is always a concern when she gets this sick.

Easter 2012 was spent at home with AnnaSophia snuggling on my lap.  It was not our traditional "go-to-church-and-visit-family-and-have-Easter-egg-hunts" kind of Easter, but I was thankful for my family that came to our home to wish us well.

AnnaSophia slowly recovered, but in the two weeks that she was sick, she lost 3 pounds.  Three pounds for a child that only weighs 35 pounds, was a lot.

After talking with transplant, it was decided that after she improved for a couple of weeks, a visit to cardiac clinic was the next step.  Of course, she is such a champ and was great with the blood draw, blood pressure, weight and height, echo and exam.  When our transplant coordinator was determined to have the doctor look at her echo before we left, alarms in my mind started going off.  The doctor wanted us to repeat the echo.

Apparently, the doctor saw an area of her left ventricle that was not relaxing like it should after contracting.  The second echo was performed with myself, the doctor, transplant coordinator and nurse crowding into the small room to view the ultrasound.  Once the area of concern was pointed out, it was plain as day.  A small area of her left ventricle looked really thick.

The first thing I that went through my mind was REJECTION.  I remember from the last time that rejection for AnnaSophia looked like a stiff left ventricle.  The walls were thick and not pumping well.  This appointment, I was told that instead of coming every four months for cardiac clinic, we would now be coming in every month to monitor that area of her ventricle.

I went home trying not to get too excited over the news.  At least the transplant team is on top of things and watching her closely, right???  By 4pm that afternoon, I got another call from transplant.  According to the doctor in charge, he was not as concerned about the ventricle issue as he was about something that shocked me even more.

The doctor saw a mass on her heart.

AnnaSophia has a 1cm mass inside of the pericardium beneath her ventricles.  The first thing that popped into my mind was post transplant lymphoma.  This is the really scary stuff that no parent wants to hear.  "Your child has cancer."  The doctor clarified that the mass looks more like the consistency of a liver, possibly a blood clot.  The thing that scares me is that this mass was not there when they did the echo on her in February, but it is now.

My mind has been wrestling with this information for a week and a half now.  My intellect is battling my emotions.  I keep thinking things like, "It can't be cancer, because she isn't EBV positive."  I keep wondering  how a blood clot could appear on a healthy heart.

My hope is that after her MRI tomorrow morning, I will have more answers.  For the time being, I just ask that AnnaSophia be remembered in your prayers this week.  I will post again after her MRI.

Blessings.

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.

Happy Birthday Mason and AnnaSophia!!!

December marks some significant dates for my family.  It's a month full of birthdays, anniversaries, and celebrations.  The most noteworthy are December 16th and December 31st.  December 16th marks the birthday of Mason and Lincoln, two very special twin boys.  Both boys turned 5; one celebrated here on earth, and one celebrated in Heaven.  Mason is the special little boy whose heart beats inside of AnnaSophia's chest.

I can't begin to explain the humble thankfulness I feel to be entrusted with Mason's heart.  The Hibbert family gave my little girl a second chance at life, and that is a gift beyond all measure.

December 31st, 2011, AnnaSophia turned 4 years old.  There were times that I never thought I would see her celebrate her first birthday, let alone her fourth.  She is so vibrant and healthy!  People are amazed to learn that she has a heart transplant.  I often hear people say that she doesn't look like a child with a heart transplant.  That's when I stand on my little soap box and let the world know that this is exactly how a child with a heart transplant should look.  A heart transplant should enable these children to live life to its fullest.  These children are little miracles that have been blessed with the gift of life. 

There will always be things about AnnaSophia's life that will be different from a typical child.  She will take medication to suppress her immune system for the rest of her life.  She is doing so well that she now takes only one medication twice daily.  Because of the immunosuppression, she will always be at a higher risk of getting sick.  If she does get sick, she could get much sicker than a non-immune suppressed child.  I will always carry the burden on my heart that she continues to be at risk for infections, rejection, transplant coronary artery disease, or cancer.  These complications could become our reality, but for now, she is an amazingly healthy little girl, and I'm thankful for the gift of time that God has given me with her.

If there is one thing that I have learned from the journey we have travelled (and continue to travel) is that it is so important to treasure every moment with loved ones.  AnnaSophia has a knack for living life exuberantly.   She loves to dance and is known to break out into a full ballet recital at the drop of a hat--at home or in public.  She told me just the other day that when she grows up, she wants to be a mom and a princess and live in a castle.  She loves with all her heart.  She gives the biggest hugs and kisses ever.  As girly as she is, she loves to wrestle.  I honestly think it's that big, brave boy heart that beats inside of her that makes her as rough and tumble as she is girly.  She has no fear!  She's quite the daredevil, and she wants to do everything the big kids do. 

As we welcomed 2012, I'm thankful for my children and the blessing that they are to me.  I try to instill a sense of thankfulness in all three of them.  Life is full of hard circumstances, but we never fail to count our blessings.  Our daily prayer is that as we receive blessings from the Lord, that we would be able to bless others as well.

May 2012 treat you well, and may you all feel the presence of God each day.

Big Fat Zero!!!

This is probably the only time in one's life that getting a zero is king.  AnnaSophia's biopsies came back today, and she scored a zero.  Yay!!!!  Why is a zero a good thing you ask?  The biopsies are scored on a scale of 0-5, zero means no rejection and 5 means severe rejection.  AnnaSophia scored a 1 on her last biopsy, which meant that she had mild rejection brewing.  The great thing is that if the rejection is mild enough, it can reverse, and the heart muscle and function can recover. 

AnnaSophia passed this heart cath with flying colors!  She was negative for Ebstein-Barr Virus (EBV) and Cytomeglovirus (CMV).  Her immune suppression levels were right where they needed to be.  Her heart function and vessels looked great, and now I know that her biopsies look perfect.  Everything looks better than I could've imagined.  I feel very blessed to have the assurance that she is doing so well. 

Thank you to everyone who prayed so diligently for her.  I greatly appreciate all of the prayers and concern.  They mean the world to me.