Sunday, August 31, 2008

Speaking of Poems


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.

Saturday, August 30, 2008

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

Tuesday, August 26, 2008

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.

Tuesday, August 19, 2008

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!

Friday, August 15, 2008

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.

Wednesday, August 13, 2008

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.)

Monday, August 11, 2008

Day 5 - On The Move

(First Smiles)

Sorry to scare everyone with the news of Eden's fever. She is doing much better and they are now attributing the spike in temperature to a side effect of one of the immuno-supressents. Thanks for all of your concern.

On the brighter side, Eden was moved to the CPCU as expected. This move is very positive, as it means she is no longer in need of critical care. We are put in a completely private room, much like a hotel room, and given more control of her care. We have a nurse that checks vitals every four hours and otherwise Eden is disconnected from the monitors or Oxygen. She is free to wander the floor; they even have a playroom for kids. She is allowed as many visitors as wanted, although we are still trying to watch her exposure. The highlight of her day was a visit from Zander. I wish that I would have gotten a picture of her face when he walked in the door - she beamed! Their pictures below don't give this greeting much justice.

With each bit of Eden's independence, she grows happier and I more anxious. I have definitely found comfort in the monitors, personal nurses, and frequent doctor's visits - not to mention their control of the medicaiton schedule. Luckily we have a couple of days here still before she is discharged. The plan is still for her to go home on Wednesday. We will let you know how this progresses.

Sunday, August 10, 2008

Day 4 - Two Steps Forward, One Back

In our world, where minutes pass like days, it seems like eons since I have last updated.

One step forward (literally):
Eden took her first steps on Saturday (3 days post-transplant). The first attempt was just a brief moment of standing and then later in the day she walked the length of the CICU hallway. As you can imagine, this was a huge accomplishment with nurses cheering on either end. This morning she did the same and then upped the ante in the afternoon by completing a lap around the entire unit. She is motivated by the chance to see other babies, learning their names and checking out their toys, etc. The best, however, was the sight of Porter (my parents' dog) playing Frisbee in the parking lot out the window.

Second step forward:
After several days of medication weaning and therapy adjusting she has gotten to a much more independent state. She only has one line placed in her groin for the last IV med - I should clarify that she is still on several medications but they are now at an acceptable dose to be given orally. Her pace maker wires have been completely removed and O2 is used intermittently. These are all great strides which also qualify her for a move to the CPCU (the Cardiac Progressive Care Unit) and which have spurred talk of a discharge as early as this coming Wednesday. Can you believe that?? THIS WEDNESDAY! Yikes...

One step back:
Eden got a fever. Out of the blue, but not completely unexpected, Eden's temperature began to rise. This is scary for many reasons, all of them relating to rejection. She has had two days of a very strong immuno-supression which removes the body of all white blood cells and is due for another day of this tomorrow. Meanwhile, we have been on a higher alert of germ precaution. They are still unsure of the cause and will know more tomorrow with the results of some blood testing. We are strongly hoping that the fever was related to the ATG (the immuno-supressent) and not an infection or worse, rejection.

This is where we can use your focus. Rejection of Eden's new heart will be a concern for her entire life, but the fear is greatest just after transplantation. Without going into too many more details, we would really appreciate your thoughts and prayers to get us beyond this initial setback. Thank you.

Please enjoy some photos of Eden's first steps.

Saturday, August 9, 2008

Day 3 (in the morning)

(Please note: I will be attaching photos to the bottom of this blog; check them out if you choose.)

Eden had a good night last night and was finally able to sleep. She has shown signs of being much more comfortable and has been weaned from all pain medication but Tylenol. This is amazing enough to repeat.... Two days after a heart transplant she is only managed with Tylenol!!! This is not unique to Eden, as we have learned that most children are this tolerant of pain (It is the adults who seem to have trouble).
They continue to wean her other IV medicine as well and she is doing great. Her pace maker was disconnected, she is almost off of the blood pressure meds, and is even spending long periods of time without oxygen. The more medicine that is removed allows more freedom from the bed. We have held her again today and she has been through most of her movie selection. She is finally napping some also which should help with her irritability. They even expect her to try and walk today!
I realize that the pictures are a little hard to see. She has definitely not regained her camera pose, but that too will come with time. Thanks so much for your calls, cards, gifts and continued love and prayers.

Friday, August 8, 2008

Day 2 (Post Transplant)

I told myself when I started this blog that I would never apologize for not writing often enough... so I guess I can't do that now. It always happens that midnight is about the best time for me to finally sit down to think and write....

Eden continues to do pretty well from a medical stand point. They are watching her blood pressure closely as she seems to be running pretty high right now. Her blood sugar was up initially and came down today enough to be taken off of insulin. Most of these responses are normal for the situation and timing.

Many advances happened today. Most importantly, we were able to hold her! She begged and made it happen, even with more than ten lines of medicine, tubes and wires attached. A little later in the day they removed her two chest tubes that were draining the blood from her chest, as well as the arterial line in her neck. They have learned from the older patients that these are the most painful of her attachments. This also allows for more comfortable movement. Apparently too comfortable because Eden stood up in her bed at the first chance of freedom! As you can imagine, this was quite a shock for us all.

Eden has been very uncomfortable and agitated. She has been difficult to sedate and keep calm. She didn't sleep but for a couple of minutes at a time today and was finally moved into a private room and big bed for some peace and quiet. All of the doctors and nurses are surprised at her lack of response to sedation medicine and are working hard to find the right "cocktail". She was hardly effected by morphine! She has even rolled over and tried to scoot off the bed... while saying, "E Raine go home". As funny as this is, it is extremely exhausting for everyone. All of my usual mommy mechanisms to soothe her aren't working; I even attempted to lay with her in bed until I got a nice punch in the jaw. This fighter is literally trying to fight her way out of here!

I will attach more pictures in the morning. I am off to attempt some sleep.

Thursday, August 7, 2008

Day 1 (Post Transplant)

(Please note: After some debate, I have decided to attach a photo. If this is too difficult for you to see please be aware that it is at the bottom of this entry.)

This has been the longest and scariest 2 days of our lives. I spent the night in Eden's room last night, while Brian was just down the hall in the lobby. He wasn't feeling well (from all the stress) and the first sight of Eden sent him over the edge. She had a very good night with only minor concerning issues. We started the day just before the shift change learning that Eden would be extubated. This is a very big step, as it means she would be breathing on her own. It also allows her to talk and drink. They slowly reduced her sedative which caused her to awaken even more. Unfortunately, she would get agitated and over stimulated with too much noise and touch. Most of the morning consisted of finding the right medication and sedative balance to keep up her respiratory function but to also allow her calm and rest.

She continued to do well throughout the day. They started giving her some water and then formula. She was pretty desperate for nourishment; she has even enjoyed sucking on swabs of Pedialite. She has already made us laugh a bit...asking for movies, Chaco and Zander. Her spunk really came out when she kicked the cardiologist and said "get away" in a drugged slur. However, most of the day she has been sleeping and moaning.

We have great support in all of our family here, along with our pastor and friend, Emily. Eden is allowed three guests at a time, but it didn't take long to realize how stimulated she would get with such a presence around her. We are happy to have visitors if you live in the area, but can't promise that you can see Eden. We are on the 3rd floor of The Children's Hospital and have staked claim in a corner of the CICU waiting room.

Please know how grateful we are for all of your thoughts, prayers and positive energy sent Eden's way. This girl is such a fighter and I can't help but believe that all of you and your love are the reason she continues. I will try to update more than once tomorrow - we have learned that she may be getting some lines removed and that I MAY BE ABLE TO HOLD HER! Her bandage should be coming off as well. This is all happening so fast...

Wednesday, August 6, 2008

Eden's New Heart Day

At 9am this morning the hospital called to say that they have found a heart for Eden. I have spoken with DeDe, our transplant coordinator, so many times on the phone that I was no longer shocked to hear her voice on the other end. However, this time she did sound different.... She explained that a good match for Eden has been found and the surgeons were going to check it out and make sure that it is in the best possible condition. We needed to head to the hospital within the hour to start Eden's prep work for surgery.

Obviously, I was a bit frantic. I was taking care of my friend's 1 year old for the day (or so I thought) and had to quickly find a neighbor to watch her and get together our stuff for the hospital. Once we were placed into a room and Brian arrived, things began to settle down. Eden was initially free to run around. She met her roommate and even watched Nemo. As the day progressed we got more information from the surgeon. By 4pm we learned that the new heart looked good and the surgery was a go! (False alarms happen when the body has suffered too much damage or the heart seems to look bad in person.) The surgeons removed the donor heart and flew back to Denver while Eden was taken into the operating room.

The separation was the worst part. Sending away our otherwise healthy child into a heart transplant surgery felt terribly unnatural. Luckily, they had already started the anesthesia and Brian and I probably suffered more than she. Then began the waiting.... and the rallying of our friends and family. As our group grew in the lobby, we were periodically updated, and the tears turned to laughter.

The surgery took 5 hours exactly and then a couple more to finish and transport her back to the CICU (Cardiac Intensive Care Unit). We first saw her at about 1:30am, seven long hours after our departure and she was already starting to move and open her eyes a little. Her body was quite a shock to see. She has tubes and IVs everywhere, not to mention the at least 20 different monitors flashing and beeping behind her.

The greatest news to share is that she is doing so well. We continually receive wonderful reports and every Cardiologist that walks by, looks at Eden and all the monitors, and raves of her status. I am a bit overwhelmed at the stats right now, but will give more details as I learn. We have had the best possible situation right now and can only hope it continues. Please keep her in your thoughts and prayers, especially over the next couple of weeks. We will continue to update as we can.

Tuesday, August 5, 2008

Eyes, Wise, Spirit, Love

I am often asked how I am doing and I usually give a brave answer like, “making the best of it!” And even though most days include lots of laughing and enjoyment, everyday I wake up wishing Eden’s heart condition has gone away. I usually dream as though Eden is a typical healthy kid and am reminded of the truth in the morning. I lie there and go through all the wonderful things about her life and little body for which I am SO grateful - her big blue eyes, her astounding intelligence, her wild spirit, her never-ending love. Sometimes repeating these attributes, mantra style, is what gets me through the day. Eyes, wise, spirit, love. Eyes, wise, spirit, love.

I recently read an article about a man suffering from an extremely rare and severe disease. He elaborates on the metaphor of an “orphan” malady and the all too real feeling of being abandoned by a failing medical system, falling through the cracks, and even envying people with “families”, otherwise known as common diseases, such as a real orphan might do.

I found myself relating to this man’s lonely situation. Not because Eden’s condition is as rare nor has she been ignored by the medical system, but because I feel lost among mothers… in a child driven age where play dates are the norm and entire industries are focused on the latest toy or designer clothing. I envy mothers of healthy children, their ease, relief, and security; I even envy their daily challenges and fears. I know few, if any, mother’s fighting my same battle. I am an orphan. Drawn towards the mother of an autistic child or one with Downs Syndrome, it takes all I have not to run up to those women and say, “I am one of you!” No life is guaranteed, I know, but oh, to worry about Eden eating too much candy, growing out of new clothes, or at which school she should be enrolled sounds like such a luxury.

I realize that it is not widely accepted to publicly feel sorry for yourself. But the truth is some days I wish our situation were different… I wish it was easier and I wish Eden’s future were more secured. Mostly, I wish I could wake up tomorrow morning and fret over which preschool Eden should go to rather than if she will live to go.

Eyes, wise, spirit, love. Eyes, wise, spirit love.

“The I in illness is isolation, and the crucial letters in wellness are we.”
~Author unknown