Yesterday morning I found myself at theend of my rope. I was tired, I was discouraged, I was emotionally drained. With every nurse or doctor that walked into our room I burst into tears. Days on end of watching Elisabeth suffer was proving to be too much to bear.
But then, just when I thought I could hang on no longer...
...my inbox became flooded with emails...people near and far who wanted to express their love and well-wishes for Elisabeth.
...local missionaries from my church showed up to give Elisabeth a blessing.
...my friend Justyne arrived - sock monkey in hand for my little queen.
...card after card after card was delivered to Elisabeth's bedside from others in the hydrocephalus community (24 of them!).
...a fellow hydro mom arranged to have a local restaurant deliver a meal to me in our hospital room.
...some volunteers came in with a bag of fabric and told me to pick out my favorite. A short while later they returned with a pillowcase they had sewn for Elisabeth.
...a dear friend and her mother arrived with a new little sock animal for Elisabeth - a panda, it's adorable!
...that same friend - who happens to be a photographer - did a photo shoot, documenting this moment in time.
Countless acts of love and kindness have been showered upon me and Elisabeth. Instead of tears of sorrow, I find myself weeping tears of gratitude. And within my heart I feel peace and comfort - and I know all will be well, no matter what the future holds.
Thank you, thank you, thank you to each of you who has thought of my sweet child this past week. What a difference you have made!
And now a few more photographs that my friend Lee Ann captured:
I feel emotional tonight. Like tears might start streaming down my face at any moment. The last time I felt this way was six months ago as I lay in a hospital bed recovering from my spinal fusion. It's not a feeling I get often - usually I have nerves of steel. But right now I feel slightly vulnerable. Perhaps it's because it's the middle of the night. Perhaps it's because I've been laying next to my daughter while she screams in pain. Perhaps it's because I have had doctor after doctor tell me that they don't know what's wrong with her.
It's not easy watching your child suffer. Especially a child like Elisabeth. She doesn't know what is happening or why. I worry that she hears my voice and feels my presence, yet I don't bring her relief from her pain. Does she wonder why I am not helping as she is cries out in agony?
I don't know what today will bring. I don't know how long this will continue. I don't know if or when they will discover the source of her torture. But I do know that we will carry on, because if there is one thing that Elisabeth has taught me...it's to carry on.
Not much has changed since yesterday. Elisabeth is still here, she is still in pain, and we are still not sure what is going on. We have doctors and nurses and people of the like stopping by all day long. And of course there are EEG's and medications and lots and lots of needles. Elisabeth is not doing well, but she is enduring - as she always does. She's a trooper, that's for sure.
Look at Elisabeth's new friends:
The one on the left is from my mom and the one to the right is from her fellow hydro friend Claire. Aren't the adorable? They will make fine additions to Elisabeth's sock animal collection.
Oh, and when I get home I have to post pictures of what Elisabeth's little friend Meagan sent her! It's perfect!
p.s. - Yesterday was the 6th month anniversary of my spinal fusion! How appropriate that I got to spend it here at Sacred Heart where it all went down :) More on that later.
If I had to choose one word to describe yesterday it would be pain. I have never seen Elisabeth in such discomfort - in such agony. It was heart wrenching to watch...to feel helpless...to know that kneeling at her bedside and whispering 'mama is here' over and over wasn't doing anything.
We still do not know what is wrong with Elisabeth. With a child who can't communicate it makes our job much, much harder. We don't know what is hurting, or why, or how, or any of that. All we know is that she is hurting. She is hurting so bad that even morphine isn't bringing her relief.
Please keep Elisabeth close in your thoughts today.
On Friday afternoon Elisabeth started acting uncomfortable and began crying and whimpering and even screaming out in pain. We were in the ER with her three nights in a row as we desperately tried to figure out what was causing her such discomfort.
Last night our local hospital admitted that they were at a loss as to what was wrong with her, so her care was transferred back to Sacred Heart in Spokane.
I am tired - we are all tired. We went to sleep at 5am this morning - and here it is 7:30 in the morning and I am up typing this. So, it was pretty much a no sleep night.
We are hoping for answers today; to find some reason that Elisabeth has been writhing in pain for three days straight. I'll share info as we get it....
So we almost didn't get out. Almost. Elisabeth had a tonic-clonic seizure right before Dr. G's PA stopped by yesterday morning...and then she wasn't sure she wanted to let us go.
"Oh, those are totally normal," I tried to convince her. Then she laughed. I suppose the word normal does not typically pair up with tonic-clonic seizure, but hey, this is Elisabeth we're talking about.
So we had to stay a little longer. And as soon as I was convinced that they wouldn't discharge Elisabeth in time to make it to her orthopedic appointment, I called and cancelled. And of course - a few minutes after that - they decided that it would be okay for Eliasbeth to go. So I called right back, snatched her appointment back, and off we went.
[Elisabeth says, 'I thought we were getting out of here? Why in the world am I meeting with another surgeon?']
[That's her curvy spine there in the background.]
[Don't mind her unruly appearance, she has what we like to refer to as hospital hair.]
We spoke with the orthopedic surgeon about her feet and about her recovery from her heel cord tenotomy last Thanksgiving. I told him how Elisabeth can bear her own weight for up to 20 seconds when she has her braces on. Have I mentioned that here before? This is a huge accomplishment for her.
Then we chatted about her spine - and about her severe scoliosis. It has given her such a hunched back and has made her extremely lop sided. In fact, the surgeon thinks her spine may be to blame for her trouble sitting up these days.
So what do you do about a child with extreme scoliosis? Well - get this - they might have to do a spinal fusion once her lungs are fully developed. And not just a single level fusion like I had - an entire back fusion - all the way from the shoulder blades to her pelvis. Great googly moogly!!! I didn't even know they did such things! But for now, she is getting a soft brace to wear. He said that it's not going to stop her spine from deforming, but it might give her enough support to help keep her upright while sitting.
So that was the appointment in a nutshell.
After that.....we went home! Needless to say, Elisabeth was excited:
Her sisters were excited too. They are so in love with their baby sister; it's not easy to watch her go off to surgery and not get to go along to watch after her. Here they are reuniting again:
After a long few days, Elisabeth crashed out in the comfort of her own bed:
It felt good to have the whole family under one roof again.
[Chillin' before surgery....no idea what was coming.]
So things didn't go quite as planned during Elisabeth's surgery yesterday. I figured that out as I watched the clock ticking away past the time they were supposed to be done with surgery. It ticked and ticked and ticked. I started feeling a little anxious because I knew something wasn't right. Finally, after two hours, Dr. G came out.
"That was a bit of a wrestling match," he said.
Then he proceeded to tell us that there was a considerable amount of scar tissue that had built up along the shunt tract - following the distal catheter down her neck, through her chest, and into her abdomen.
Apparently this is extremely rare in a child Elisabeth's age.
So Dr. G. had to carefully scrape it all away...all the way down the inside of her body. How he did that I do not know. Granted there were four incisions, but still.... (Dr. G's PA told me it was actually 'quite barbaric'). Once that was all taken care of, he placed her new medium pressure shunt.
Elisabeth spent the rest of the day on morphine. She opened her eyes two times, other than that she has slept. Poor little thing, I can't imagine how sore her body must feel - ouch.
[Incision #1 - head]
[Incision #2 - behind the right ear]
[Incision #3 - chest]
[Incision #4 - Abdomen]
Thanks for all the well wishes. And a extra big thanks to my mom, who had this new sock monkey delivered to Elisabeth along with a get-well balloon! Thank you!
We made a whole bunch of sock monkey pins for our family and friends to wear in honor of Elisabeth today. Because what represents Elisabeth better than a sock monkey? (They are her passion in life, that and binkies!).
[Lorelai, modeling a sock monkey pin.]
My sister did the most amazing thing in the world.Amazing, I tell you! You see, I was incredibly disappointed because I wanted Elisabeth to have a pretty hospital gown for her shunt surgery, but seeing as it's only been scheduled since last week there simply wasn't enough time to order one.
That's when I got a text that said, "I can SO do this"along with a picture of the fabric she was purchasing.
I could not believe it! First of all, I didn't even know that Jennifer knew how to sew. Hello?! How is she the most talented person on the planet? And second of all, I was incredibly touched. Her devotion and love for our family seems never ending. I am so, so, so grateful that she is my sister.
Here are some pictures of her making one of Elisabeth's hospital gowns (I say 'one' because she made two coordinating gowns!):
[That's my sister!]
And then Jennifer put us to work sewing buttons on the pockets, because she said that the more love that goes into it the better.
Tomorrow, Elisabeth will go in for surgery and we will say goodbye to her original shunt. It was placed the day after she was born - just a few days shy of four and a half years ago. And carefully - for four and a half years - it has drained cerebral spinal fluid from Elisabeth's brain down to her peritoneal cavity - essentially allowing her to live. Needless to say, we are extremely grateful for that little shunt and all it has done for our child.
Now, a few pictures of Elisabeth's first week of life - and her first week with the original shunt:
Just after shunt surgery - what an absolute chub she was! (9lbs 5 0z - at two weeks early!)
[September 25, 2007]
Her shunt sure was prominent on her head at the beginning - but now she has all those curls to cover it up.
Meeting her sisters for the first time:
The plan for today: Pack for Spokane.
For Elisabeth: Formula Meds G-Tube supplies Sock Monkeys Binkies