Tuesday, November 30, 2010

New Mercies

Morning comes a lot earlier for me these days since Chris and I are shift sleeping, and my shift ends by 2 AM. As I sat here in the dark listening to the two people who are most precious to me sleep, I started to softly sing, "The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning, new every morning. Great is Thy faithfulness, oh, Lord, great is Thy faithfulness." Do I really believe this? Absolutely. Every morning, I awake and feel as if the Lord has refilled my cup, and I find that I have more faith, hope, joy, and love than I did the day before. Not only is His faithfulness great, but He enables me to be more faithful not only to Him but to all those around me.

My God certainly gave us new mercies and proved Himself to be faithful yesterday as, after days of watching my sweet Willow Grace laying in bed limp as a rag doll, she woke ready to make up for lost time and began to talk nonstop! The first thing she did was tell us that her Rudolph the Red Nosed Reindeer was in the car and we needed to go get it! We were scrambling for socks and shoes and keys, and Chris made the joyful and rash promise that not only could she have Rudolph but anything else in the world she wanted! It's a good thing that really is all she wanted. Whew!

I can't tell you what a joy it was to hear that sweet, yet hoarse, voice squeaking my name and asking questions and showing more of that spunky character we have come to love. She entertained the nurses and doctors and any other visitors who came in the room, and it was absolutely joy-inducing to witness the smiles and hear all the laughter caused by my delightful little girl. So far, she hasn't laughed or even smiled herself, but maybe today or tomorrow we'll get to experience that much anticipated event.

She is still quite pale, weak, and can't eat anything. I can't believe that she hasn't eaten in more than a week now! The dialysis machine perks along, and the plan is still to have her on it indefinitely. She's covered in wires and tubes. She has a little wire on her finger which takes her blood oxygen level and heart rate and has a red light that causes her finger to glow. She tells everyone that she has a Rudolph on her finger. (:

(She loves books. In the picture, you can see Rudolph over her left shoulder, her Rudolph book tucked just behind her, and her little lighted finger. She knows all the words to the song!)

Here are a few things that you can pray for:
1. Her blood oxygen level keeps dropping, and when it drops too much they have to put the tubes back in her nose which, of course, she hates.
2. Pray that her little kidneys will start functioning well on their own.
3. Pray that she will be able to eat something soon and keep it down.
4. She needs an extra measure of patience. As you can imagine, she doesn't want to be in this bed any more. Of course, after she sits up for about a minute, she has to lay back down exhausted.
5. When the dialysis starts each new cycle it really hurts her. They've given her morphine a couple times to help her manage, but I really don't want her to have much of that, and it also makes her really itchy. Pray that God will take away the pain.

Thank you so much for thinking of us here in this little room and for praying for us. It means so much to know that people outside what has become our world care about what's happening here and are lifting us up in prayer. We love you and appreciate you more than you know.

Lamentations 3:21-26 (ESV)
"But this I call to mind,and therefore I have hope: The steadfast love of the LORD never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.'The LORD is my portion,' says my soul, 'therefore I will hope in him." The LORD is good to those who wait for him, to the soul who seeks him. It is good one should wait quietly for the salvation of the LORD.'"

Sunday, November 28, 2010

Walking in Love

For me, walking in love means so many things right now.
1. Obviously, I'm busy with loving my sweet family -- Willow Grace as she recovers in this hospital bed, and my husband Chris as we walk this road together.
2. I've had to choose to walk in love and forgive the doctor who almost sent us home from the ER on Wednesday, a decision that would have had harsh consequences.
3. I'm overwhelmed at the love others are showing me through this whole process. I am truly walking around bathed in the love being poured into my life through prayers, gifts, visits, and words of encouragement.
4. And, as I journey through this trial, I feel the love of my Heavenly Father washing over me every step of the way.

From about 1:30 this morning until our first guests arrived, I sat in the sturdy Cracker Barrel rocking chair beside Willow Grace's hospital bed praying and watching her looking dazed and confused. As a steady stream of visitors (21 in all) wandered in and out of our little room, she was either staring off into space or sleeping. I hoped all day for more response from her, and yet she remained mostly quiet and still. This is totally normal after all that she's been through, but my mother's heart could not help but hope to hear my little girl's voice sweetly chirping my name or to see even the hint of a smile.

The good news: The nephrologist (kidney specialist) who is taking care of Willow Grace said that she is doing better than expected and that the dialysis is progressing a bit faster than expected. She is now in her 28th hour on the dialysis machine, and there have been no complications. At this point, she will be on the machine indefinitely. Though she had to have a transfusion when her red blood count dropped to 20 last night, she did well with the transfusion. She was finally able to get more nourishment tonight when they switched her to a TPN, a bag of nutrients given through her picc line which includes electrolytes, protein, carbohydrates, and sugar.

Other tidbits: For those of you who have asked, you cannot treat HUS with antibiotics. It actually feeds the bacteria and causes it to grow. As to how long we'll be here, the doctor told us that it would be another 2-6 weeks. The last two patients who were recently treated with this here were released after 4 and 6 weeks. I am praying that we will be home by Christmas! Willow Grace is not allowed to be around children under the age of 5 for at least two more weeks because HUS is very contagious for children but does not affect adults.

Since she hasn't been sleeping much at night, Chris and I have been sleeping in shifts, reluctant to leave her awake in the middle of the night alone. I get the first shift. Below is the scripture I am meditating on tonight as I lay my head down to rest. I hope that it encourages you as much as it does me.

Psalm 37:3-7a (New King James Version)
3 Trust in the LORD, and do good; dwell in the land, and feed on His faithfulness. 4 Delight yourself also in the LORD, and He shall give you the desires of your heart.5 Commit your way to the LORD, trust also in Him, and He shall bring it to pass. 6 He shall bring forth your righteousness as the light, and your justice as the noonday. 7 Rest in the LORD, and wait patiently for Him....

Day of Dialysis

It's just after 2:30 AM, and I am sitting here watching all the little machines working on/monitoring Willow Grace as she watches episodes of My Friends Tigger and Pooh on DVD. (Why oh why did they decide to take that show off of Playhouse Disney!?!) So far she's seemed a bit dazed and has responded very little. And I wonder what is going through that sweet little mind. I know she doesn't understand what has happened/is happening to her, and she's just trying to focus on something familiar like her beloved Tigger. She has had neither anything to eat nor a bath since Tuesday, and I know that adds to her level of comfort.

Saturday morning, we started out thinking that we'd be going through another day of observation, and I hoped to get a nap in somewhere since I'd only taken in about three hours of sleep Friday night. However, it wasn't long before we were informed that Willow Grace had not progressed like we had hoped and dialysis was needed. The surgical team and the picc line team was called, and around 2 PM we all headed down for surgery. They put in a picc line and pernineal catheter, and the surgery went very well. Not long after we were back in our room, and they were preparing the dialysis machine. For now, the treatment is continuous. That little dialysis machine is putting in a lot of work!

While standing there watching her little groggy face, the fact that I had not eaten all day and the tension I'd been feeling finally caught up to me, and I felt the world begin to spin just a bit. My lovely Moma, my mother-in-law, Donitta, my sweet Aunt Ruby, and my dear friend, CB, were all on hand to make sure I rested and that Chris and I finally got some food in us. The blessings of strong, Godly women are immeasurable.

For now, we're just talking all of this a day, an hour, a moment at a time. The docs have said that we'll be here at least another 10-14 days. Interestingly enough, the nurse on duty tonight has a daughter who had HUS when she was about Willow Grace's age. They where in the hospital for six weeks. That was about 20 years ago, and we are praying for a speedy recovery and a much shorter stay!

Our God is faithful and true. I feel peace knowing that He is holding her in His mighty hands which are so much for capable than mine or any doctor's. While it's amazing to me, I can rest in the truth that He loves her so much more than even I do. Healing is hers and ours, and I'm thanking God for the mighty work that He has begun in her and is carrying on to completion. I will ever praise Him!

Saturday, November 27, 2010

An Elephant Named Ralph, Willow Grace, and God

Willow Grace w/her favorite buddy Ralph the elephant (11/25/10)Before we left for the ER on Wedneday, she made sure that she had him with her!

Last night I laid here on this little couch in Willow Grace's hospital room watching her stare at the ceiling and occasionally at Mickey Mouse on TV. She slept very little which means that I slept very little. I think we must be near where the Life Flight helicopters take off and land. I stopped counting after I heard the fifth one, and I prayed for each of those pilots and patients and their families, and I am so grateful that though we are battling through this we are not dealing with some of harsher realities that other families are facing. And what's more and makes all the difference is that we have divine hope based on our faith in God. In my quiet moments, I've been praying not only for my little family but for all those who have found themselves in this place this week.

In case you haven't heard, Willow Grace was originally diagnosed with colitus and dehydration and then with e. coli poisoning and Hemolytic Uremic Syndrome (HUS)which attacks the red blood cells and kidneys. As of yesteray morning, her kidneys were functioning at about 25%. Antibiotics don't work on this. She is getting fluids by IV and lasiks. They are watching her very closely and have discussed with us the possibility of dialysis, and they told us that at the least we'd be here another week. Right now they are really concerned about her potassium levels and her platelets.

As unreal as all this still seems at times to me, I feel overwhelming peace and comfort. I know that this is due to the hundreds of prayers that have been lifted up on our behalf, and I am tremendously grateful for everyone who is praying for us. We need it and feel it. Please keep praying and thanking God for Willow Grace's healing. Also, I've been constantly choosing to put my faith in Christ. I've been reading the Bible, praying, and singing praise songs every chance I get.

Here are the two scripturs which are keeping me encouraged and which I posted on the large dry erase board in Willow Grace's room:

1 Peter 5:7 (New King James Version)
casting all your care upon Him, for He cares for you.

2 Timothy 1:7 (New King James Version)
7 For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Thursday, November 25, 2010

Thanksgiving in the Children's Hospital

First let me start by saying, this is not how I envisioned my Thanksgiving this year. I pictured Willow Grace running around and laughing hysterically at her cousins. I plans on cooking a half a dozen dishes for two different Thanksgivings, one with the Reeds and one with the Bratchers. I thought about Mom's amazing sweet potato casserole and dressing. And yet, none of those things will be a part of this day. Instead, I'm sitting her watching my little sleeping princess, looking so tiny and fragile in this big hospital bed.

Last week she started to feel a little bad, and then on Saturday she woke up with a fever, just a little one at 100.2. But by Saturday night her fever peaked at 104.3, still not alarming, as she has had high fevers like that several times before. What did cause alarm was when she started passing blood in her stool. By yesterday morning, she was passing only blood and was as limp as a rag doll, and so to the ER we went. The last 24 hours has been a journey, and it looks like we still have some ground to cover before we finally get to take our little sweetie home.

But I have so much to be thankful for:
-my friend, Leslie, who dropped everything to come with me to the hospital yesterday
-the great care she's receiving here
-a comfortable room for us all to be in, even if it is in the hospital
-our family and friends who have been so supportive
-all the prayers that have been spoken for Willow Grace and for us
-the fact that her condition is not more serious than it is
-all three of us were able to rest last night
-that I know God is holding us in His mighty hands

I could go on and on. Hopefully I'll be back here in a couple days though with a whole new list of things for which I am thankful. Thank you for your prayers.

Monday, November 22, 2010

Because I'm the Mama....

Willow Grace has been battling some little illness for the last three days, high fever which peaked at 104.3 and no appetite. I decided to keep her home today, and, of course, I can't just sit around and watch her lying there soaking up Disney and Nick Jr. shows. I've been cleaning... everything - mopping, vacuuming, washing and folding laundry, scouring the bathrooms, and basically wiping down every surface that would stand still. That's what mamas do. And maybe with a newly disinfected house we can finally banish this little annoying bug.

Today Willow Grace decided not to call me Mama, at least not mainly. I've either been Sweetie or Ariel. She decided that she wanted me to call her Cinderella and also decided to give some of the other women in our family princess names. I'll list them in case those ladies tune in here today:
Gran-Gran (my mother-in-law): Snow White
Nana (my mom): Jasmine
Eva Joy (my sister): Sleeping Beauty (I think this one fits great!)
Kara (my sister-in-law): Tiana
Meredith (my sister-in-law): Belle
She wanted to give her daddy a princess name as well, but I told her we could call him Prince Charming and, thankfully, she agreed!

I better go, my little Cinderella is calling.

I couldn't find a pic of her in her Cinderella dress, but here's our little drama queen as Belle just a month ago.

Tuesday, November 09, 2010

Once a teacher....

I am an English teacher, and that will always be part of me. It’s just not what I’m currently doing and haven’t since I had Willow Grace a little over 3 years ago. But I will always teach in some form, even if it’s an unconventional form. The last two years I worked for admissions, and I’m thrilled that this year finds me back in the classroom every day.

Current Job: Full time substitute teacher, middle and high school in a private Christian school
Job Satisfaction: Oh yeah!

This morning I sat in a sixth grade classroom listening to a girl praying for her classmates and their families. Through the wall, I could hear a third grade class next door singing “This is the Day” in their sweet little voices. Nearly every morning I sing that song myself, choosing to recognize that each day is a gift from God and also choosing to live my life in gratitude.

I love working in a Christian school. I love that at any moment you may walk into a classroom, office, or even hallway and find people praying. I love that our football teach sings “A Mighty Fortress is Our God” in the locker room before heading onto the field. And I am saddened that no everyone has that freedom, even in our country. Not trying to be political, just expressing my feelings… I’m not going to focus on the negative today. I really just want to express my gratitude for where God has assigned me. It has not always been easy. In fact, there have been moments, days, and even weeks when I thought about giving up and moving on. I’ve faced some of the hardest trials of my life here. But the Lord has kept me here, and I’m content to be here for as long as He wants.

Friday, November 05, 2010

At last?

I haven't written for this blog in so long, nor have I written much of anything. I yearn to write. I need to write. I have so many stories orbiting my brain which deserve telling, so many characters into whom I could breathe life. And yet time is my enemy or perhaps it is lack of time. When I get the chance to sit for a moment, all my inspiration is taken over by mental to-do lists and exhaustion. But I am yet determined to write, to find my time to write, and to finally fulfill what I have long set out to do and even what some many close to me expect.

On a different but related topic, I have been toying with the idea of writing scripts specifically for middle school students. I recently wrote and directed play with 7th graders, and I've been called upon to do the same thing for 8th graders. When I directed middle school plays some years ago, I would read dozens of scripts before finding one that was decent and worthy of being staged. And truthfully, many of the stories that play out in my head seems well suited, maybe even better suited, for scripts. Anyway, it's a thought....

And so now, I've eased my way back into blog writing. Maybe this will open up new doors for all the other writing in my life - poetry, scripts, novels, etc. I hope.