Speaking of Poems

Tigers

What are we now but voices
who promise each other a life
neither one can deliver
not for lack of wanting
but wanting won't make it so.
We cling to a vine
at the cliff's edge.
There are tigers above
and below. Let us love
one another and let go.


~ from Wideawake field, by Eliza Grizwold

Poem appreciation is new to me. Something recently clicked inside, I guess. This one especially speaks to me right now. It resonates so much of how I feel about Eden's new life, all of our lives really. I should mention that I didn't just whip up a quick tiger painting to go with this entry. I actually found it through a websearch and all the credit goes to Pablo Dominguez. But isn't it just awsome... in a "I want to screem until someone listens" kinda way? Great energy.

Bigger than big

...this poem was written just before Eden's call for a new heart:

I recently met this little girl,
Still yet a baby, in fact, was she.
Tiny enough for her two years of age
Yet bigger than big can be.

She seemed to be somewhat shy at first.
She wouldn’t look me in the eye.
My instinct was to gently hug her
But I dared not to make her cry.

For this baby girl is named Eden.
Just a bundle of pure delight.
With a name that perfectly suits her.
She unconsciously disguises her plight.

As she ran two and fro to her parents.
Their love for her, illuminating their eyes.
She was spunky and goofy and full of giggles,
Like a golden child who never cries.

Yet underneath her normalcy
In a place beneath her tiny chest
Is a weakened heart that cries for help,
And a new heart is the top request.

The request is so very delicate
And frightening all the same
For without this heart for Eden
Her familiar world will not remain.

Alletta Callaway

Hospital and Home, Thanks

I was looking back over pictures from the last 20 days and am still amazed at how far we have come. I came across this group shot we took in Eden's hospital room on Saturday (3 days after the surgery). It was totally illegal to have more than three visitors in the CICU rooms, but after all the alcohol we snuck into the hospital what's a few more people in her room, right? Anyway, so many thoughts come to mind with this picture.


All of the people that came to visit us... those that flew in town on just hours of notice, those that brought food and flowers, and those that were there in spirit. I also look at our faces and see half relief and half shock. Eden was barely out of the woods at this point. She had stood on her legs for the first time and that was such an amazing sight.

Now, those same legs are learning to adjust to the heart of an energizer bunny. We have heard that she may be experiencing some muscle exhaustion, just as we do when we push our bodies to work harder than we are used to. Brian and I are also learning to adjust to parenting a child with more energy - one who doesn't love to go to bed as much as she used to and has the energy to protest her limits a bit more.


Luckily, we are not alone. My mom spent the first week with us, Brian's mom was here for the second, and now Brian's sister, Erin, is here. I truly believe that I would not be able to get out of bed in the morning if it wasn't for all the help that we have been getting. We also have to thank Brian's company for their amazing support, as well as, our friends and neighbors that continue to bring meals and provide playdates.

Eden is doing better every day and her heart continues to look great at her appts.; we could not ask for anything more. We have met several families through this process, and although the general consensus is that young children do very well with heart transplants, we are quite aware of what a fragile place we are in. Every good report is still a relief and every extra minute we have been given with Eden is appreciated beyond words.

Fun at Home

Eden continues to do well. Her second visit back to the hospital was very positive. Her echo showed no fluid around the heart (which would indicate possible rejection problems) and her other vitals looked normal as well. We are struggling some to find the right dose of her anti-rejection medicine. They check her blood levels at every visit and adjust her dose accordingly. Her metabolism is working so much faster now and it may take a couple of weeks to get it right.


She is not eating as much as I would have hoped post transplant, but they say this should only improve with time. She has gained over half a pound since the surgery, although she is not quite back to her weight pre-transplant (which was probably a lot of water). The biggest difference is how much more positive mealtime has become. You can see that her silly personality has not changed.





















She has also really enjoyed taking care of her babies lately. I attribute this new behavior to all the care she received in the hospital. She especially loves to feed them and change their clothes.

We have also promptly put Eden back to work. She has always loved the cell phone, but more recently she has taken it to the next level. I can't imagine who she is imitating?!


Brian and I often say that Eden is handling the surgery and recovery much better than we are. We are learning a whole new disease to manage while trying to make life "normal" again. Eden has the wonderful luxury of oblivion and obviously, we are a little stressed. But we can take one look at this amazing little girl - her strength and resilience - and it's all worth it!

Settling In

We have now had two full days at home. Eden is much more comfortable here than she was in the hospital, but you can tell that she is not fully sure she is safe. She is finally sleeping and even eating some (which she was NOT doing in the hospital), however, I am still needed at her side almost all of the time. It breaks my heart to think that she has to regain trust in the security of her surroundings. Does she think we may whisk her away again and take another organ? I even had to take a bath with her this evening, one of her 'old' favorite things to do. My mom is still in town, but leaving tomorrow. Eden won't allow her too close either. I sometimes want to say, "I'm just a little girl too, she's a real mom." Brian's mom, Susan, arrives tomorrow and we have weeks of family scheduled to help out.

Our first appointment back in the clinic went very well. Eden didn't much like being awakened or told that we were heading back to the hospital. She especially didn't like giving more blood (they will do this at every visit to test the level of her anti-rejection medicine), but was an old hat when it came to giving vital signs, laying for the echo, and doing an ECG. The staff was so pleased to see how well she was doing and all of her tests looked great. She will continue these visits twice a week for the next three months, during which time they ask us not to travel and that we still stay within an hour of the hospital. The transplant coordinators have been absolutely wonderful. We have been assigned one to follow Eden for the rest of her life, but have already grown attached to them all. One is on call at all times and I have probably overused this privilege - luckily they say it is expected that the new transplant families will check-in about every little thing.

Eden is confusing to read right now. One moment she is happy and silly and full of energy, then the next is all tears (a lot like her mother, but with less energy and more tears!) They say that her body is having to adjust to a new/good heart. All of her organs are learning how to function with good blood supply and I assume that her energy levels are a reflection of this adjustment. She was literally doing laps around our coffee table this afternoon, but ended the night with throwing up in bed just as she had fallen to sleep. The medicine is the most stressful. Fortunately, Eden has taken medicine her entire life; however, none as critical as her anti-rejection meds. These are to be given at 8am and 8pm - on the dot! - forever. When she vomits as much as she has been, we worry about her levels and the possibility of rejection. This, too, just needs time. We are learning how to "sneak" the poor tasting meds in her mouth. Since they can't add flavor to a few of them, we inject two syringes at once. One with the medicine and the other with chocolate syrup or a melted popsicle... this is working over half of the time :).

If you have made it this far, thanks for reading and thanks for allowing me an outlet to express all that is happening in our very small portion of the world. As I said in an earlier email, I have not yet stopped to breathe that sigh of relief. I am overwhelmed with emotion and mostly consumed with gratitude... for the family who offered us such a gift, for the doctors and nurses that made this possible, and for Eden's strength and will to survive - not to mention all of you that have flooded us with love.

Home Sweet Home

We made it!

And I am so exhausted that I am in tears. Please understand our unquantifiable graditude and the fact that I don't have the energy to write. Although we have to be back to the hospital at 7:30 am (they are keeping a close eye), it is nce to be home. I will write tomorrow when I have more energy. Until then, all I can say, is "thank you, thank you, thank you."

Going Home!

As I write, the preparations are being made to send us home...

The papers have been signed.

The stitches have been removed.

The toys and gifts she accumulated have been packed.

The goodbyes have been said.

The tears have been shed.

The Thank Yous will never end...

And, Eden finally pooped! (I know, TMI, but after 7 long days this too was success.)