Wednesday, December 22, 2010
After we all returned home from the hospital we struggled to return to some sense of normalcy, and in my desire to return my home to a somewhat organized state focused more on that than I did on spending time with my Savior. I began to feel overwhelmed and frustrated, and I realized once again that I had made a poor trade - organization for time with the Lord. My heart, mind, and emotions all began to betray me and travel down paths devoid of the Lord's calling. We are still adjusting and working through Willow Grace's recovery. She continues to improve more and more each day. She is actually sleeping between 11-14 hours each night! Her little body (and I do mean little, as she lost so much weight) is busy in the healing process. However, in most respects, things have calmed down considerably, and so, I now readjust and refocus and thank my God that all along the way He is with me, gently leading me back into His presence and in the way I should go. I confess that I so desperately need Him, and that is one place of desperation for which I am not ashamed.
Friday, December 17, 2010
And now, Christmas break has begun. Woo-hoo!
I love everything about Christmas - the sights, the sounds, the smells, the parties, the shopping, the celebrations, the decorations, the church services, the presents, the festive feeling, even seeing those tacky sweaters I refuse to wear on other people! Today, I'm going to try to accomplish a bit of my Christmas shopping with Mom and Willow Grace in tow, two of my favorite shopping buddies. We're celebrating our Christmas with Chris's family early, this Sunday, and so I must accomplish at least half of my shopping today.
For the first week we were in the hospital with Willow Grace, she didn't talk and hardly responded to us in any way. Once she started again, it was like she was making up for lost time and talked constantly, even in her sleep! One afternoon, just a day or two after she finally started talking again, while she was taking a long nap, she quietly murmured, "Shopping... I want to shop." That's my girl! Yesterday afternoon, when I returned from work, she and Chris were waiting for me parked outside our house. They had just returned from Cool Springs Mall where Chris had taken her to ride the carousel. That sweet girl LOVES a carousel! And she had been telling Chris that she really wanted to go to Target. Last night, she finally got her wish to go shopping. Not only did we go to Target, but we also took a lovely little drive down to the Ashland City Walmart. For those of you who tend to worry, don't! It was not taxing on her as she was content to ride around in the shopping carts while we were there. Also, we had her layered up and bundled her in new her heavy, thick kitty cat blanket. She was warm and toasty and was delighted to be out and about!
When we finally arrived home, it didn't take long for exhaustion to overtake us while we rested in the living room. Willow Grace was, of course, the first to slip off, and Chris carried her upstairs so that she could rest better in her little bed. Not long after that, however, I heard her calling for me. I hurried to the steps but just not quick enough. She was attempting to come down them when her little legs gave out half way down the first set. She tumbled down the last 3-4 steps and slumped over on the landing. She was unhurt, didn't even cry, but just desperate to get to me. Though she continues to build in strength and energy, she still has quite a bit of trouble with the stairs. However, I guess she just needed a little more time with Mama before settling down for the night. I was able to get her back to bed and off to sleep with little effort.
And now, I must hop around and prepare the two of us for our fun day ahead. I hope you are all well this fine December morning! I'm still reveling in the joy of having my girl home for Christmas and feeling the awe and wonder of the miracle my dear Father has accomplished in our lives.
Wednesday, December 15, 2010
Last night, Chris took Willow Grace and me out for a drive, just to get us out of the house for something pleasant and for a change of scenery. Even when it snowed a couple days ago, we remained indoors and simply peaked out the storm door marveling at the beauty of our world dressed in fluffy white crystals. First, last night, we stopped by Sonic for some sweet ice tea and corn dogs (for Chris & me, WG still not really eating) and then wandered around Bellevue in the car looking at Christmas lights. Fields blanketed in glistening snow, houses outlined with festive colored or white icicle lights, and yards bedecked with gently lit over-sized Nativities and giant blow-up snowmen and Santa Clauses -- I'm not sure whose eyes were wider, Willow Grace's or my own. First of all, we both LOVE Christmas, but also we've seen little else besides the hospital room and our house in almost a month. It was visually overwhelming, and we loved every minute of it!
Earlier in the day yesterday, Willow Grace had her first follow up appointment. Our pediatrician was very encouraged and encouraging. He told us that while her progress is slow and will likely continue to move forward slowly, she is still making progress. The long list of issues I quickly ticked off was met with a singular response - all normal parts of her recovery and no cause for concern. He believes that it could take another 3-4 weeks before her energy, strength, and appetite returns.
As for me, I've returned to work today. Strange, exhausting, and wonderful! I've been soaking up all the hugs, cheers, kind and loving words, and exuberant smiles lavished upon me. I am so grateful to work with such loving, thoughtful people. What a blessing! At the moment, I'm sitting in a room monitoring nine eighth graders who are taking their science exams. It's pretty laid back, a good way to ease back into things. I'll only be here for two days before Christmas break hits, and then I'll have the next two weeks to regroup, refresh, and help Willow Grace along in her recovery.
I want to continue to thank you for your prayers and words of encouragement and for loving my little family so well.
Monday, December 13, 2010
We're slowly, very slowly, settling back into our life here, and I am trying to allow myself to rest without feeling guilty about it. Our 18 days in the hospital left me feeling quite exhausted. I know that I said to myself and others that I knew it would be a process, that I would have to readjust to life outside the hospital, and that it would take a some time for Willow Grace to finish her recovery and build back up her strength. I said it, and I believed it. Really, I did. And yet, it's an entirely different thing to live it. And so now I am continuing to employ patience, mostly with myself. I tend to be pretty hard on myself and hold myself to high expectations, sometimes unrealistically so. I don't have all the things we accumulated at the hospital organized and put away, and I haven't put away all of the autumn decorations that were still out waiting for the Thanksgiving we never got to have. There's so much to be done. I suppose it's time to cut myself a little bit of slack. It will all get accomplished, just not on the time table I had set up in my head.
Our first night home, Saturday night, I think that we were all just so grateful to be here that we practically melted into the furniture when we arrived. Willow Grace immediately started playing with her toys, but when she sat down on the floor she needed help getting back up. Later, when she tried to climb the steps to go to her room, she could only make it up one step! The last two nights, I tried to put her to sleep in her own bed, but at some point I ended up running, half-asleep to her side when she shrilly screamed out, "Mommy!" And inevitably, she has ended up in our bed. (Interestingly enough, she only calls me Mommy when she's sick, scared, or has some other problem she can't solve herself. Otherwise, it's Mama or Ariel.)Yesterday and today, she has gained back a tad more strength, and her appetite seems to be increasing as well. I so wish that I could take her out in this glorious snow. She loves it so much and wants so badly to build a snowman. So far, however, she has been content to look out the window at the snow. What's important is that she is on the mend, and we will get to enjoy our Christmas break with family and here in our little home. And I'm just going to pray for more snow this winter season for us to enjoy!
Saturday, December 11, 2010
(We took a little outing yesterday down to the 2nd floor. Willow Grace was so excited about her ride in the red wagon!)
For the moment, however, we are in a state of waiting. A little less than an hour ago, the nurse came to draw blood, and we are waiting to hear back from the lab. We need to see if, after yesterday's surgery, Willow Grace will need another transfusion. If she does, we stay until Monday when she will be reassessed. But, if she doesn't, then our sojourn here is complete, and we will finally return to our home. Scriptures and cards and Christmas decorations will have to be removed from the doors and walls. I'll busy myself with gathering clothes, toys, stuffed animals, and care packages and packing them into the big duffel bag and extra large suitcase I asked Chris to bring from home last night. This really has been our "home away from home" for the last few weeks, and it'll require a good deal of effort to get us on our way.
Strangely enough, I am a bit nervous about going home. Since I haven't been there in so long, I wonder what it'll be like readjusting to normal life, and I don't know what the rest of Willow Grace's recovery will look like there. What will that require of us? How long will it be before she's regained her strength and can do everything she did before? When will I feel safe taking her back out into public? Will she find it strange to be home? We've been sleeping in the same room, and I wonder if it will take a few nights before we can stay in our own beds. So many questions and no answers until we live it. So much of life is like that.
What happens next? Only God knows, but I'll keep you posted!
Thursday, December 09, 2010
Joyful, joyful, we adore Thee, God of glory, Lord of love;
Hearts unfold like flowers before Thee, opening to the sun above.
Melt the clouds of sin and sadness; drive the dark of doubt away;
Giver of immortal gladness, fill us with the light of day!
How can I help but sing when I look at my little girl's face, no longer constantly strained in pain or ghostly white? Praise the Lord for the great things He has done!
(Our happy Willow Grace tonight after receiving a holiday Barbie from our dear friend, Leslie)
Tomorrow, Willow Grace will have surgery some time in the morning to have the catheter removed from her tummy. Depending on how everything goes, she may or may not need to have a blood transfusion. We're praying that all goes well and no transfusion is needed. After that, we'll watch her blood levels and her nutrition, and those two things will determine when she will be released to go home. Home. That sounds so good and so hopeful to me now.
The last two days have been so joyful. Constant good news and lots of play time with my sweet girl. She's actually been out of bed singing, dancing, and walking around. While she's still be a bit wobbly on her feet, she has still managed to make the most of what energy she does have. We also finally gained clearance today to be taken off of "no contact" when her final culture came back declaring her free of e. coli! Before that came through, however, the physical therapist gained special permission for her to leave the room. The condition was that she had to suited up in a special yellow gown and hospital gloves. We told her that we needed to put her princess gloves on and a special Belle gown, and she was more than happy to comply!
(Willow Grace in the hospital playroom in her "princess" gown and gloves)
I know I've said this dozens of times here and in emails and on Facebook, but thank you so much for all your prayers. We appreciate them more than I can ever express. And I now ask that you continue to pray for us. Pray us home. And pray for Willow Grace during her surgery tomorrow, for the rest of her recovery here and at home, for our transition back to "normal" life after being in the hospital for so long.
Wednesday, December 08, 2010
- Off dialysis today
- Off the TPN/IV tonight
- Waiting for one more negative culture on the e. coli so we can leave the room and go to the hospital playroom
- Having the catheter in her tummy removed Thurs or Fri
- Should be home first of next week - a month ahead of time! Woo-hoo!
Here's a little Christmas greeting from Willow Grace (and me) to you!
Thank you for your prayers! Thank you for all the ways you've taken care of us! We're almost there! Please continue to pray us all the way home!
Tuesday, December 07, 2010
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. (KJV)
But those who wait for the Lord [who expect, look for, and hope in Him] shall change and renew their strength and power; they shall lift their wings and mount up [close to God] as eagles [mount up to the sun]; they shall run and not be weary, they shall walk and not faint or become tired. (AMP)
True faith is praying for rain and then carrying an umbrella, living expectantly. We are living expectantly, and yet my heart is still filled with wonder and amazement as I listen to Willow Grace's doctors tell me that she is improving quicker than normal. Now, instead of predicting that we will be here for another four weeks, they are telling us it will be closer to a week or possibly two! I know that prayer works and that it is working in the life of our little girl and in our own hearts. Today she was able to get out of bed for just a bit for a little physical therapy. It's heart-breaking to see the fear in her eyes as she wobbles around painfully on her little legs which she hasn't really used in the last two weeks, and yet she refused to quit trying. Such a determined, brave little girl!
And yet, I confess that, physically, I have, at times, grown weary and tired, and I have lost my patience and felt the weight of this ordeal bearing down on me. And I have looked to sleep as the only solution for curing my intense fatigue. Of course, I do need sleep, and a good night's rest certainly does help to refresh one's perspective, but it is not a lasting solution. Truly, the only thing that has carried me through this is faith. Faith in God. Faith that He will see us through this. Faith that He can take this awful circumstance and bring from it something beautiful.
Tonight, once again, my energy has been nearly depleted. I will lay down my head searching for some peace and sweet sleep, and yet if my girl needs me in the night, as has been the case several times a night every night we've been here, I will somehow call up any energy I may have in reserve and tend to her. Thank God for the blessing of three women in my life, (my sweet Mama, my mother-in-law Donitta, and my dear friend Leslie) who have been staying the nights with me here in the hospital, sitting by Willow Grace's bedside so that I might get some rest. How they have ministered to me and to Willow Grace! I am overwhelmingly grateful for the gift of their presence and how they have tenderly loved and taken care of my little family.
A couple years ago I developed a new habit. I try every night when I go to bed to focus on something positive before I go to sleep. If I can't sleep, I try listing things alphabetically in my head like things having to do with Christmas (Advent, Bethlehem, caroling...), people I love (Donitta, Eva Joy, Frazier...), or the attributes of God (gracious, holy, inspiring...); or I might focus on a scripture or something He's done in my life or the lives' of those I know. Tonight, I'll be focusing on the scripture above and praying that He renews my strength and the strength of all those parents, grandparents, and friends who are watching over children in this hospital tonight.
Monday, December 06, 2010
Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever.
Though we still had our share of challenging moments today, our day was also full of positives and little steps ahead. As for the challenges, she's still throwing up about twice a day and is also having some really painful abdominal pain. Of course, it's hard to watch her go through this. All I can do is hold her little hand and speak soothing words and pray her through it. Also, she had to have the dressing on her picc line changed today which is quite painful and scary for her.
And then, just so we could fill our drama quota for today, a man showed up at our door telling us that he needed to take Willow Grace downstairs for an x-ray because the perennial catheter in her stomach was leaking. Well, that was news to me! After what happened a few days ago, we've decided to question just about everything. The man wanted us to help him wheel her down to x-ray with everything, all her little machines, in tow. I protested and explained that she is hooked up to the dialysis machine 24 hours a day, and that machine cannot be moved. He was insistent, and Chris told him to go check again. We called the nurse and asked her to double check as well. It turns out that he had received the wrong orders. The doctor had mistakenly written down Willow Grace's name for the x-ray when it was another little girl who had the leaking catheter! I'm so glad we aren't accepting the word of every person who shows up at our door in a set of scrubs.
And now on to the positives!
First, I finally heard her laugh after not hearing it for two weeks! At 2:30 AM, she was awake and playing with her Nana (my mom) She was blowing through a Santa Claus straw which was making little whistling noises. It was cracking her up! I actually fell back to sleep listening to that sweet little tinkling noise! Also, Willow Grace was hungry today. She woke up asking for Fritos! I'm not even sure why she asked for those as she's only had them a couple times before in her life. It's not really the kind of thing she's allowed to eat just yet in the hospital, so I convinced her instead to try a roll, of which she ate half! Great progress after not eating for two weeks! Another highlight was the two hours she was allowed to be off of the dialysis today. While she still wasn't cleared to leave the room, not having tested negative for the e. coli as of yet, we were still able to get her out of bed and move around with her. And my little princess felt like singing today! Normally, she's so vibrant and loves to sing and dance. We caught a little glimpse of that little drama queen today. Check out the video below of her singing with me while her Gran-Gran (Chris's mom) holds her. (Sorry that my voice is so loud)
Sunday, December 05, 2010
Early this morning I slipped out of our little hospital room, leaving my sweet friend, Leslie, who had stayed the night with us, and Willow Grace asleep; and I wandered downstairs to grab a bit of breakfast. As soon as I stepped out of the elevator, my ears were met by the swell of a piano and the most soulful voice. At first, being so early I felt that it must be a recording, and yet I could not help but go in search of the source which I soon discovered to be in the little hospital chapel. A young black man sat alone in the chapel playing the baby grand and singing out in earnest praises to the Lord. I slid into a rocking chair in the back of the room and closed my eyes letting the words swirl around in my head and calm my heart. It was just a few moments of listening to someone else singing worship songs, and yet it was as good as any church service I could have attended.
After a few songs, he stopped, and I inquired, "So, is this something you do every Sunday, or are you a patient's dad?" To which he replied, "No, actually, I work here. I try to come before my shift so I can worship the Lord and spend a little time in His presence." He went on to tell me that he works in critical care. He describe how everyone becomes really attached the children in the hospital under their care and how hard that is, especially in critical care. Sometimes those children are here for months, and sometimes after all that time they lose them. "It's really hard when a child passes," he told me. "Sometimes the only thing that gets me through is coming down here and worshipping the Lord." He asked me about my own situation, and I told him about Willow Grace and our time here. After we talked for a while longer, he asked me if he could pray with me. Taking both of my hands in his own, he uttered the most beautiful, complete prayer including not only Willow Grace and her healing but also our whole family and every doctor, nurse, caregiver, and visitor who came in and out of our room. He prayed a special blessing over After the prayer, he hugged me and headed on upstairs to start his shift while I continued my journey to the cafeteria trying not to shed tears (even tears of joy and hope)so early in my day. What a blessed way to start my day!
Oh, how I needed that this morning. Willow Grace continues to improve though there are still so many challenges each day. Apparently she has developed an infection at the site of her picc line. She's been running a fever all weekend, and they did some tests to determine the cause. And so, they decided to give her two different kinds of antibiotics to cure the infection. The first one was fine, but the second one caused red man syndrome. In case you're not familiar with this condition, it's when a drug causes a person's head, neck, and sometimes torso to turn red and start itching terribly. Willow Grace had a terribly reaction. She was thrashing about violently, scratching her head frantically with both hands, and screaming. It was horrendous. The nurses decided to give her some Benedryl by IV which caused another crazy reaction. At first she calmed down, and then suddenly she was screaming, kicking, and thrashing about on the bed. Though Benedryl by IV can cause an adverse reaction in children, the severity of Willow Grace's reaction alarmed the nurse, and she gave Willow Grace some Tylenol and paged the doctor. A few moments after she had the Tylenol, in the middle of a crying out, she fell fast asleep, absolutely exhausted. The doctor came to examine her and determined that she would be fine. And most of the rest of the afternoon and evening, she has slept.
I'm hoping that she cotinues to sleep tonight, letting her little body heal and also allowing me to get some rest. I am one very, very tired mommy.
Friday, December 03, 2010
(Our little tree and a tiny nativity: I thoroughly enjoyed decorating our room today! Thanks so much, Janet!)
I'm sorry that I didn't get around to updating everyone on our day yesterday. It's been eventful and exhausting, and I somehow just couldn't get myself in the "head space" to process, organize, and record my thoughts. It's been a roller coaster. Each day has brought victory: She finally peed yesterday morning and twice since! I've never in my life been so excited too see pee. Even her nurses were out in the hall doing a little dance and saying, "She peed! She peed! She peed!" Everyone is pulling for this little girl, and it's a good sign that she's doing this after less than a week on dialysis. Also, her platelets are up, and her red blood cells are holding steady. However, there have also been hardships: Her tummy has been hurting very badly leaving her writhing on her bed in pain; I can tell you that's really hard on a mommy's heart. Then, last night, we found out that after all the drama we initially had with the feeding tube, they actually put the wrong tube in! They finally removed the wrong tube this morning and are reassessing her situation to see if they need to put the other one in. Talk about an exercise in patience and walking in love! It's only by prayer and God's grace that I have held my tongue and responded peaceably.
We have been overwhelmed also with the outpouring of love for us the last couple days. Mrs. Brewer's third grade class sent little gifts and homemade cards for Willow Grace that warmed our hearts and brought tears to our eyes. Strangers have sent us gifts and food and cards. Friends have brought food and toys and prayed with us around Willow Grace's bed. We've been fed and hugged and encouraged. How can we help but to be filled with hope and faith? God is loving us through His people. Absolutely overwhelming and amazing. Thank you so all so much! Love and blessings to you all!
For those of you who have asked, here are some specifics you can pray for with us:
1. Chris is on weekend dispatch from tonight through Monday morning. Please pray for a LOW volume of calls so that he can get rest and also spend time with us.
2. Please pray that God will take away the pain in Willow Grace's tummy, that He will heal the colitis, rid her of the e. coli, and heal her of the HUS.
3. Chris's grandmother was taken back to the hospital today after finally being released on Monday. She's been in the hospital for most of the last four weeks, and it's been very difficult on the family dealing with two beloved ladies ailing in different hospitals.
Wednesday, December 01, 2010
Twice today I had people show up at the door to Willow Grace's room ready to perform different medical procedures of which we had not been informed. Needless to say, this was quite unsettling. First, while Willow Grace was taking a rather satisfying nap, a man opened the door to her room and entered pulling a large machine behind him announcing that he was ready to do a chest x-ray. A chest x-ray? Why? He didn't know; it was just his job to do the x-ray. About thirty minutes later, a nurse stepped inside and said, "OK, we're almost ready to put in her feeding tube. She's not going to like this at all, and she'll probably get pretty upset!" Really? This is how they choose to let me know about these things? I had to step into the bathroom and try to pull myself together after hitting one of those emotional breaking points. I sat down on the edge of the tub and cried and prayed.
I thought, "Here we go again... more opportunities to see if I can walk in love. I put these scriptures up all over the room for a reason." Today, I kept seeing Isaiah 26:3 which is posted on the door going into the bathroom, "You will keep him in perfect peace whose mind is stayed on You because he trusts in You." Each time I see that scripture, I choose once again to trust, and in return I immediately feel God's peace wash over me.
I couldn't handle staying in the room while they put the feeding tube in. I stepped outside feeling like I had abandoned my little girl in a time of need and had just completely failed as a mother in that moment. And even in that moment of despair, God brought two people into my life to show me how much He cares. First was the mother of two of my former students who is also a nurse. She was about to head into my room to assist with the procedure. She hugged me and lovingly explained everything to me. After she went inside I stepped a couple doors down into the nutrition room to get some ice water, and I met Victor the maintenance man. He told me about doing the same thing with his daughter, "They were about to put a big ol' needle in her back, and I thought, 'Now I gonna be a man about this,' but I just couldn't. I had to go out in the hall and wait. You OK. Your little girl is gonna be OK," he told me. He talked to me a bit more and made me smile and told me he'd be praying for me.
(Willow Grace after they put the feeding tube in)
Later, one of the doctors from the nephrology team came up to apologize about the breakdown in communication. She admitted that someone should have come and explained everything to me just after they made their decisions. She didn't make any excuses for their actions; she just apologized. And I found out that some of the information I was given earlier was faulty. It turns out that Willow Grace needed the chest xray to determine why she was having such a hard time breathing and to see if she had fluid on her lungs, and she needed the tube, which is not be used as a feeding tube, to help release some of the pressure on her tummy during dialysis. Apparently the dialysis is causing her intestines to press up on her lungs which is causing her to breathe really shallow. I told them I understood that all of this was needed to help her, but I would have appreciated a "little heads up" next time.
So, today, has been a difficult day - for those reasons and also because my sweet girl has been in a lot of pain. Any parents who may be reading this understand; I wish I could take that pain away so badly. And so I pray, kneeling next to her bed, as I pace around the room, and sometimes when I retreat to the bathroom to hide my tears from her searching eyes. It's a bit funny to me that the little hospital bathroom has become my "prayer closet," but I think it's as good a place as any.
I've caught snippets of conversations in the hallways and elevators and cafeteria. Mothers and fathers, grandmothers and grandfathers, concerned families and friends - all focused on one child and how their whole world has shifted and their perspectives have changed. Some of them have been here for months, have had to return countless times, or even have more than one child here.
There are so many stories. Stories of hope. Stories of loss. Stories of fear. Stories of sadness. Stories of despair. And stories of faith.
I hope, most fervently, that our story will be marked by hope and by faith.
Though yesterday was not quite as good as Monday, we were still blessed with the sound of sweet Willow Grace's voice asking for family members, talking about what she wants to do when we leave, and crying for a Dora the Explorer coloring book. Our loving nurses here made sure that baby had some Dora pages to color. They brought several pages printed off the internet four different times, and then later they brought a whole coloring book with stickers for her. She was able to sit up a couple times and color, but she wants someone else to color with her. Even in her current state, she's quite sociable.
We had a couple scares yesterday. It seems like every day brings new challenges and more to learn. At one point, she woke up in a sort of crazed state. She was frantic and unable to answer any of our questions. She looked wild, and her eyes were shooting all over the place, quicker than I would have thought possible. After several long minutes, possibly ten minutes, our nurse paged the doctors, and I was astounded at how fast they arrived. After a few minutes more, however, we were able to get her calmed down and focused, and she responded well to all questions asked and little actions she was asked to perform. The nephrologist said that Willow Grace was just responding to the morphine and had a bit of delirium because she has been so sick. Other than that, the big events of the day were another blood transfusion and a new dialysis machine after the first one decided it was tired and started sounding an alarm every other minute. There are times when the dialysis is very painful for her, and we just try to soothe her and distract her as much as possible until it passes.
Today Chris returns to work. Please pray for him as I know it's going to be hard to be away from her all day after all that we've been through and watching over her constantly for the last seven days. We are so blessed to be in a position where I don't have to make that decision between staying here with her and losing my job or going to work and leaving her alone all day. It breaks my heart that there are so many children here who spend all day alone because their parents can't afford to be here. I can't imagine leaving my sweet girl all alone in this room all day. I've said it for years, and I continue to say it now, "I love my job. I love the people I work with, around, and for. I am so blessed to be at CPA." My sweet friend, Megan, from work, brought me some requested supplies, and yesterday morning I was able to make a bunch of colorful scripture signs to post all over the room. I have the Word of God all around me, constant encouragement straight from my Heavenly Father.
For those of you who have asked, a couple of my coworkers/amazing friends arranged a website for people who want to bring food. Here's the link if you want to see what nights are available: http://www.takethemameal.com/meals.php?t=YBXL2103 Thank you so much for all the ways you've supported our little family, for the prayers, calls, texts, visits, food, care packages, and love. I will never be able to adequately express what this has meant to me and how deeply you have touched my heart, but I hope you know how deeply grateful I am. I hope your day is blessed with laughter, joy, and peace.
Tuesday, November 30, 2010
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
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....
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
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
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
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
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
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.
Wednesday, May 26, 2010
“Then He said to them all, “If anyone desires to come after Me, let him deny himself, and take up his cross daily, and follow Me.” (NKJV)
“Now as they came out, they found a man of Cyrene, Simon by name. Him they compelled to bear His cross.”
Our lives are not without burdens, troubles, and difficulties; in fact, we have been called to take up our cross and follow Christ. But we were never meant to carry it alone. Most importantly, we have been told in I Peter 5:7, “Casting the whole of your care [all your anxieties, all your worries, all your concerns, once and for all] on Him, for He cares for you affectionately and cares about you watchfully.” (AMP) Also, God has put us in communities – families, friendships, churches, small groups, etc. God puts people in our lives to help us on our journey and even with carrying our crosses, just as Simon of Cyrene carried Jesus’ cross for Him. Though I’m not sure if he realized the impact of this service at the time, what a privilege is was for him to assist the Lord in such a tangible manner! And what a privilege is it for us to serve one another. I hope that someone considers me a “Simon” in his/her life.
Do you have a Simon in your life?
One of my Simons is my dad – constantly taking time out of his day to edify me with scriptures and Godly counsel, passing on strength to me through prayer and encouragement, and making me laugh through hard circumstances. Because of his support, I’ve grown stronger, and I’m better than I ever could have been.