Friday, August 28, 2009

Another one bites the dust

As a result of Eden's recent heart cath. results, she was able to say a happy farewell to another medicine (aka, the "yummy" one). She is now down to the one and only rejection medicine she will take for the rest of her life, Neoral - brand name for Cyclosporine - also known as "the yucky medicine".

She is also not expected to check back in at the heart clinic for four months! Since I'm not ready to space out her check-ups that far apart, we will be going back in October. Still... she has come so far from those twice a week visits!

Wednesday, August 26, 2009

Pure Gratitude

Today we are recovering and rejoicing.

Eden had her annual heart catheterization yesterday which involves a full, exhausting day at The Children's Hospital. All year, Eden's heart has been monitored by EKG and echo cardiogram. Once a year, they take a much more detailed look at her heart's function (internally). Entering through her right vein and left artery in her groin, they were able to take pictures, test pressures, and extract biopsies on both sides of her heart. This is a fairly routine procedure, but it does come with significant risk.

I had a terrible time watching Eden enter back into that operating room. Thankfully, she came through it like a champ and received stellar results. We immediately learned that her function and arteries looked great (coronary artery disease is a concern post-transplant) and then today we got the biopsy results back... a big fat 0! (This is great news, by the way!) A zero indicates no signs of rejection whatsoever. It is my understanding that a good score - and a more common one - is in the 1A or 1B range. We are thrilled!!

Here are some shots of Eden today. She is taking full advantage of her "rest day". Movies and Cheetos - I am such a sucker for good results. Back to the grind of daily living tomorrow...

We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~Thornton Wilder

Saturday, August 22, 2009

First photo

Eden came with me to my last OB appt.

(In fact, she went to the doctor with Brian that same morning and was very excited that mommy and daddy were seeing doctors and not her. Can you blame her?)

Anyway, we were given a bonus viewing of the baby - a 3D ultra-sound - which was pretty hard for her to understand. As they squirted the gel on my belly, she said, "are they doing an echo of the baby?". She is pretty familiar with ultrasounds of the heart (echocardiograms), but wasn't quite sure why they would do this to mommy's belly.

We were given copies to take home and later that night she was very proud to show our dinner quests. She grabbed the photo off the fridge and said, "the picture didn't come out too well, but here is my new baby brother or sister."

She couldn't be more thrilled to be a big sister. I must admit that the difficulty I am having with this pregnancy (i.e. being scared to death of health problems) is sure lessened when I see how much this new baby is pleasing Eden.

Friday, August 21, 2009

You guessed it

The rumors are true,
at Christmas I am due,
with baby number two.

Thursday, August 20, 2009

Tuesday, August 18, 2009

A thousand words

I realize that this child and her incredible experience have changed my life like nothing else could. I view the world differently now, I do. Therefore, I spend most of my days looking through a narrowed lens and don't allow myself the chance to give and feel and be for others... like I once thought I would... like my friend, Gustavo Fernandez, does. We were lucky enough to at least take part in his recent venture.

We also came away with some breath-taking shots of our miracle girl. Just looking at these makes my heart skip a bit; I'm sure I could come up with a thousand words for each photo. Now if I could just put them on paper and send them to our donor family (we are allowed to make contact after a year), but I haven't gotten past "thank you..."

Thank you so much, Gustavo!

For more info on Gustavo's work and his HOGS for kids project go here and here. You'll be glad you did... he's amazing!

Wednesday, August 12, 2009

Heart Birthday Extravaganza

We had a great time celebrating Eden's first heart birthday on Saturday. I am still amazed at how happy and receptive Eden was with all of the attention. We enjoyed some great food and there was plenty of entertainment for the kiddos. It was nice to have so many friends and family partake in this very momentous day. We missed those of you who couldn't make it, but appreciate your thoughts, calls, and cards.

Although the day was mostly spent with smiles, it was hard not to think back to a year ago. Each day post-transplant we would remember where we were and how Eden was progressing. I have especially focused on thoughts of the family we have yet to meet, but gave this gift to us at such a difficult time in their lives. I hope that they may one day be able to share in this miracle too.

Thursday, August 6, 2009

A Year Ago Today....

... Eden looked like this:

It is still hard for me to look at this picture, not because of it's grotesque reality, but because all the feelings I never allowed myself to feel rush over my whole body. It takes my breath away. I don't know how we lived through this experience, or the last year, but we couldn't be more grateful for Eden's continued health.

Speaking of grateful, we've been able to participate in a few fun events these last couple of weeks that have enabled us to fund raise for and honor the two organizations that made Eden's transplant possible: The Children's Hospital and The Donor Alliance. The Donor Dash is a 5k run/walk sponsored by The Donor Alliance every year to honor the individuals and families of organ donor and recipients. Eden and I participated last year, but Brian wasn't able to make it. It was nice for him to experience the emotion of being surrounded by so many other transplant stories.

Here's Eden with the other heart transplant kids:

The next weekend, Brian and Lance (my brother) road in the Courage Classic. A three day bike ride (and over 250 miles) in the Copper Mountain area raising funds for The Children's Hospital. Eden and I only made it to the finish line, but were so proud of our strong and tired guys.

("Daddy's number 1!)

Tuesday, August 4, 2009

The week that changed our lives...

As I told some friends tonight.... sometimes it feels like 10 years have past since Eden's heart transplant, and other times, just 10 days. Life hasn't been easy peasy, but boy, what a difference a year can make! I am not typically a proponent of living life in one year intervals. I would like to say that living day to day (or hour to hour) is much more ideal and better for my mental health. But humor me while I look back to a year ago...

Eden's changes:

Weight then - 21lbs; now - 26lbs

Height then - 30in; now - 35in

Face and belly then - swollen with water weight; now - lean, lean, lean

Primary source of nutrition then - bottle w/ formula; now - butter, chocolate, and mac 'n cheese :)

Hours of sleep in a day then - 15-17; now - 12 if we're lucky!

Endurance then - minimal; now - endless

Medicines then - 5 a day, up to 3 times; now - only 2.

Vomiting then - several times a day, especially while eating; now - rarely

Attitude then - compliant; now - dare I say... defiant!