An note from our aunt, sister... friend

I should mention that we asked Erin to send us some of her thoughts. She spent the third week post-transplant with us. Her help and presence were invaluable. Thanks, 'Tia'! We miss you. When are you coming back?

Hello, this is Brian’s sister, Erin, writing to you from Seattle. It has been 4 weeks since I returned from Denver and I still don’t know if I am recovered! I came from my little one bedroom condo where I live by myself. I don’t really cook, do laundry once a week, and clean only when necessary. So as you can imagine being in Denver for even one week was a huge change of pace for me. I had no idea how hard running a household can be. I also had no idea how a person who takes up such little space in the world could be such a force.



Eden did pretty well the first few days I was there, letting me give her baths, playing with my makeup, and letting me teach her new words that may or may not be appropriate (boobies!). She was and is a really funny, smart, amazing child. But she did struggle too. She threw up so hard one day that she just couldn’t quit dry heaving - her precious little body fighting so hard to not feel sick anymore. She screamed bloody murder when I tried to take her for a car ride – she is so frightened to be taken away from her parents. And she burst into tears when she had an accident in her big girl panties – we couldn’t tell if she was either embarrassed or unhappy about being wet.



As adults we are taught to be strong, to fight through even the most difficult of times, to not let hardship wear us down. If we have had great family and friends – a good support system – we manage thru even the most difficult of times. We do it for survival. But we rarely do it with as much charisma and humor as this 2 ½ year old does. Eden Raine has no way of understanding what she went through, she has no way to realize what a tremendously difficult life event she underwent. And she smiles still, she dances, and laughs, and plays, and loves.



When I sat down to write I thought I would talk about how hard it was on me to do some minor housework and play with my niece, but the more I have thought about my week there the more I realized how truly lucky I am to have had the opportunity to spend time with Eden and my family. Eden in her short life has taught me more about fighting thru difficult times, about survival when things seemed impossible, then I could have imagined. I know that she is my niece, so this may seem biased, but she truly is a miracle, and one that I am pleased and proud to watch go through all of life’s adventures!

Thanks to Alyssa and Mackenzie

Eden had a great time delivering these treats to her doctors and nurses at her latest clinic visit.

Here's how the appointment went (this is also my excuse to let you in on how Eden is spending two mornings a week!):

First, Eden gets her blood drawn (we have to be there when the lab doors open at 7:00am.... sooo early for a girl who likes her sleep!) Here, we are in the Nemo decorated room - Eden's personal favorite.

After offering our thanks with bread and brownies to these wonderful people that so quickly and cheerfully take our kiddo's blood, we were off to the Heart Institute. This is when we take medicine, try to eat some breakfast and wait a bit.

Next: Into the heart clinic for... vitals

Then: Echocardiogram and EKG

********

And finally: a visit with the nurse coordinators

(here you see Jilayne and DeDe)

We handed over our "gratitude grub" and were almost done. The last, and maybe the most important visit of the day, was back to the CICU. After all, we were thanking the individuals who allowed us this miracle, and who better than the Intensive Care nurses who cared for us all at our worst.

Oh Gillian, with grace and ease you entered our crazy lives. We walked into your shift just an hour after learning a heart was available for Eden. You treated us as though we entered a luncheon given in our honor. We are so grateful for your many talents and abundance of love. The same goes to Kim, Suzette and all the other nurses that touched Eden with their healing hands.

Enjoy the treats... Feel the love.

"He who plants a tree...

Plants a hope."

-- Lucy Larcom (poet, educator and editor in the 1800's)






Do you see a reoccurring theme? I've never been the type to collect things, objects or otherwise. I have not been very sentimental either (to a fault, Brian would say)... until now.


Hope ; Hearts ; and anything Garden.


What better way to give tribute to all three. Figuratively and literally. After much delay, we finally began our own Garden of Eden with this "perfect purple" crabapple tree. AND... thanks to our friend Sandi, Eden's room has been adorned with this beautiful, hope-ful, tree. Do you see the hidden hearts?





Here's to a future full of hope, love, and growth.


Update on Eden: Her heart continues to do well. Her spirits, on the other hand, seem to be diminished a bit with this cast. 1 week down, 2 to go! Wish us luck and strength!

6 weeks behind us...

... and another "owie" to distract us.

After three long and painful days, we chose to get a second opinion from an Orthopedist at The Children's Hospital only to find out that Eden had in fact broken her leg.

Now is one time that I struggle with sharing all of our "family news" to the blog world because you get to learn about some of my not-so-proud moments. Like how on earth did this child who should be overly protected break her leg?? Well, the truth is... I still don't know. One moment she was lying on the couch and the next on the floor. In my defence, we have learned that this is a somewhat common occurrence with toddlers. She actually has something called a "toddler fracture"

Thankfully, the cast doesn't seem to be slowing her down too much. I am just going to put a helmet on this kid. Watch out world... Eden Raine has a new heart and renewed energy!

A bump in the road - More prayers please

As if Eden's body wasn't busy healing enough, she is now mending a sore leg.

If you recall my previous entry... where I mention some anxiety about caring for two sick "children" alone (and even regard myself as the 'not so perfect' mother)... my worst fears came true. In only a matter of hours after my aunts left, Eden managed to fall off of the couch! In my presence no less!! This seemingly insignificant event turned into a transplant clinic visit, a pediatrician eval, and then an x-ray yesterday. Luckily there was no fracture found, but Eden does continue to have a dramatic limp and seems to be in pain. I say "seems" because she will not tell us that there is pain nor will she identify a location. In fact, she is very adamant about not having an owie. She will limp away from me saying, "no owie, mommy, no hospital". She is one smart cookie! Unfortunately, her strong will is enabling us to understand what she is feeling, where it is, and how we can help fix it.

I realize that we have already asked all we can of you, however, if you could squeeze out any extra healing energy we would really appreciate it.

The Balancing Act

The 5th week (post-transplant) has come and gone, as well as our fifth round of family help. It was hard to say good-bye to my aunts Lois and Karen today. Not only because they are such wonderful work horses, but also because I am offically alone for a couple of days. Brian is in Crested Butte for work.... so the true test begins.

Will we survive?

Well, Eden has re-entered a very needy phase of her healing process. It luckily seems to come and go. She hasn't been sleeping very well (we were up 3 times last night!) and doesn't like me to leave her sight. On the positive side... her clinic visits remain encouraging. She is down to 3 medications (2 immuno-suppressants to prevent reject and 1 for her blood pressure) and vomitting much less.





Chaco has also made our lives a bit more complicated. His never healing ear has required numerous staples, 4 trips to the vet, 3 medications, and he has even ripped his way out of 2 e-collars. Handicapped or not, he remains the best frisbee catcher in the west.





None-the-less, we keep moving forward. In fact we are now headed out for a run. This should improve the moods of us all! I am also vowing to let a few things go around the house. Since I have never intended to nominate myself for "mother of the year", I will let you in on my plan for the next day or so...

5 years ago:

(yesterday)

In Grand Lake, Co

Just as the sun was setting

Joined by our closest friends and family

Brian and I united our lives.

(And had a blast celebrating!)

Even though this is a blog for our daughter, Eden, to share her amazing experience of waiting and recovering from a heart transplant. I can't help but feel it appropriate to honor this anniversary. In 5 short years we have endured so much as a young family. I couldn't be more grateful for the partner I chose to share this with (I'm sure that Brain feels the same!) and for the life we have made together. Happy Anniversary, My love.

Scenes from our day

I was watching Eden doing lots of this with Zander and Nic (the nanny)...

Our BIG Helpers

We are on week four... yes, week four post-transplant, but more importantly, week four of our family members coming to help. Help with what you ask? Well, before you jump up and offer your services (because I know that you all have been dying to drop everything and come to Denver) you should hear about the grueling tasks that we have been happily handing over.


1) Laundry. And not the easy kind... once a week - wash, dry, fold. Oh NO, Eden can easily vomit 3 times a day. This means she is going through several outfits, plus rags to clean up. Did I mention that she is also being potty-trained? Yep, throw in a couple more pairs of paints and maybe a rug. And that's just Eden!


2) Dishes. We do have a dishwasher; however, many meals are being delivered and this requires the added duty of cleaning, labeling, and storing/returning the assortment of pots and casserole dishes. Not to mention my obsessive need to boil Eden's medicine syringes and tooth brushes (don't ask...).


3) Meal Planning. (see #2) Also, good luck navigating through our fridge... who knows what's in there? Actually, a new labeling system as been added to the outside of the fridge (thanks Roberta!) - watch out Dewey Decimal.

4) Errand Running and Odds and Ends. Of course, there is the occasional dry cleaning drop-off and pharmacy pick-up. But don't forget mowing the lawn, going to the grocery store, and manning the phone. Oh, and Chaco! Usually this would mean, a little food, water and a couple of frisbee throws; however, his ear accidentally got caught on another dog's tooth this past weekend so he is also on a twice a day medicine regimen and wearing a protective cone.


So who are these superhuman helpers we have had?


My mom, Eldonna, was here first. She got the brunt of the hospital to home transition, including extreme cleaning the house, a very clingy child (that didn't want much to do with her), and a depressed/anxiety ridden daughter (me).


Brian's mom, Susan, was next. She got all of the above with an added, hefty amount of house projects. Just to mention a few, she painted Eden's room, tackled our unruly yard, and spent many hours cleaning our car.


Then Brian's sister, Erin (Tia), came. She was by far the most successful at taking care of Eden who was finally allowing someone other than her parents to touch her. She also made meals to freeze (which we haven't tried yet, Erin, but am sure they are to die for!) and picked up after her brother - not me of course. Although, the best of all... was when she shoved me out the door and right into the nail salon for manicures and pedicures! What a luxury!

My dad, Stan, and Roberta are here now. Although only two days in, they have already experienced the best and worst of "life with Eden post-transplant". My dad spends most of the day on his hands and knees, right at Eden's level, playing, reading, and just being goofey. Roberta, aka Dewey, came equipt with her own apron and spices (need I say more) and was officially crowned the potty-training queen after Eden's first #2 accident.

Obviously, there have been many more "care takers" and angels that have gotten us this far. For all of your individual efforts, please know that we are so grateful (and will proving it to you, too, soon)

So without further ado.... these are our attempts at photographing our appreciation:

Eden Raine, can you look up at the camera please?

No, Sweetie, over here. Don't frown. Make a silly face, smile!

Well, okay. But could you smile? Pleeeease. Tia will let you play in her make-up if we get a good picture.

Oh, almost. But your eyes are closed. One more. You can do it. Remeber the make-up...

Great. Good enough.

Sweet rewards.

P.S. Don't mention any of these things to my aunts who will be arriving next week!