To good to be true
She will leave fingerprints all over your heart
In some ways living in a hospital setting with young children is really not that much different than living at home. Messes still happen! Every morning between 5 and 6 a.m. a nurse arrives in our room to draw Ashley's daily labs from her line. Sometimes Ash sleeps through this process allowing me to continue pretending to be asleep and keeping my eyes closed tight so my body wont actually realize that I am awake. This morning unfortunately that was not the case. Ash became aware of the nurse and all that was happening so after the nurse exited I was forced to get out of bed and start our day. It began with a diaper change, which after the one I changed late last night filled with yucky blood, was pretty uneventful although she was irritated with me. Then it was time to empty her ostomy bag. For any of you moms out there who have had to empty these on one of your precious little ones you know from experience that it is never pleasant. ( I giggle to myself as I am remembering my sisters reactions each time I would vent Ash's bag. They would hide their noses in their shirts or under a blanket!) Anyway, I had it emptied into the little specimen cup and had set it down on the bed (big mistake, I am still learning as we go) to seal and tuck her little bag back into her diaper when all of a sudden Ashley decided to hurry me up a little. She began to kick her legs at me because one lesson she hasn't yet learned is patience and over the cup of yucky, smelly, nasty you know what went. It was every where! All of her nicely washed, soft, yummy smelling blankets I had stacked onto her bed were covered in it. Not to mention her legs and my hands and arms. So much for hoping to jump back in bed after a quick diaper change! I am praying this is not an indication of how our entire day will go. So after changing sheets, jammies, another diaper, and throwing in another load of those blankets, I finally tucked my little one back into bed and began her morning round of meds.
How frustrating! I typed a very long message and then it just disappeared from the screen. I have no idea what happened, but I will attempt to re-do a little of it.
I would have never "expected for things to move so quickly for Ashley. After such a long wait (almost 9 full weeks of not eating) we are now approaching FULL FEEDS! Now for the really great news, tomorrow morning the plan is to turn OFF her TPN. I definitely did not "expect" this to happen. It will be the first time since Ash was 11 days old that she will not be receiving it. I am speechless!(I know Dave would have never "expected" that to happen!) There are so many things I want to write, but honestly can't find the words. As happy and excited as I am, we are still trying to balance it all with a dose of reality. Things can and do change, but for the moment I am ecstatic!
Good Morning from our new room here at the Nebraska Medical Center. I am so happy to be back! Oh, how I have missed you guys. Your messages, your support, your kind words, and of course your prayers are so valuable to me and I have been lost without them.
The move to cooperative care is on. I don't have any details yet, I will post when I do.
"Until we meet again," is what he said as left this morning and quietly snuck out the door. I was laying in the bed refusing to acknowledge that it was morning and Dave was actually leaving. He had hugged me tight and given me that little kiss on my forehead that is so famous in our house. I laid there and actually began to feel knots in my stomach. After the door closed and I knew that he was on his way my stomach continued to feel sick at the thought of being here alone for so long. Dave and the kids will not be back until December 22. That is so far away! 25 longs days until we will all be together for the first time since September. As I walked into our tiny Ashley's room this morning she was all smiles and waves not even realizing that her Daddy had gone back home. It took a little while for her to stop watching the door, but I think she has figured out that its just the two of us girls again.
One day several years ago when my Allison was only 3 or 4 we were driving to Oklahoma to spend Christmas at my sister's house. It happened to be dark and very cold that night and when I looked in my rear view mirror I saw my little Allie with her face and hands pressed up against the window. She had her little tongue stuck out against the glass. I watched her for a minute or two wondering what in the world she could be thinking before I asked her to sit all the way back in her car seat. The next morning as I went out to the car to bring in some gifts, I looked at the window and saw her tiny prints. Next to this blurry, yucky spot that I think is where her tongue had landed was the most beautiful set of finger prints. You could see all five fingers from each hand that she had left behind. I giggled to myself not thinking too much about it at the time, but every once in a while my mind drifts back to that memory of my Allie's tiny hands left on my window for no one but me to enjoy and I thank Him for creating her. Each time my heart has smiled at the thought.
Let me say that yesterday was such a journey for me and my whole spirit. After feeling such joy and then such disappointment, I finally gave in to the tears and took myself to the room to go to bed. It just seemed like everything came crashing down around our little Christmas Cave all at once. In just a few short hours we had seen Ashley do the best she had since transplant and then as quickly as it came it was gone. It was all too much. As I laid my tear stained cheeks on my pillow last night I allowed myself to just be still. I tried not to think of all the sadness in my heart. I started talking to God about the journey we were traveling together. I acknowledged that there had never been one step of it that I had traveled alone. Even in the darkest, scariest moments of it I could sense His presence there with me and Ashley. I thanked Him over and over again for allowing me to be on this journey. Although my heart was broken, I knew that I would not want to be anywhere else in my life. If I am not on this path, then that means I do not have my Ashley. When I became still enough to realize once again that this too would be alright the sadness in my heart just melted and gave way to praise. I was praising Him for creating my Ashley. I was praising Him for giving her life. I was praising Him for the gift of transplant. I was praising Him for this hospital and the surgeons in it. I was praising Him for the nurses He has allowed to care for my baby and also allowed to become my friends. I was praising Him for the families of the patients I have come to know and love. I was praising Him for allowing me to be me. I was praising Him for the heart (although it is way too sensitive at times) that He gave to me. I was praising Him for my husband who carries the brunt of our situation without a complaint. I was praising Him for the amazing son and daughter I left back home that He has given to me. I was praising Him for all that He has created. I was praising Him for loving me even when I give up hope. I was praising Him for not "needing" to know me, but for wanting too. I was praising Him and then I just fell asleep.
Tonight as I sit to write, the tears fall freely from my eyes and I can't seem to talk. As quickly as our hearts begin to hope they become broken. If I could go back to this morning and erase the mornings blog maybe I would. This road is ugly, and it is long, and it is lonely. Our Ashley is now vomitting her feeds just like before. The progress we have made is being taken back. They have stopped Ashley's feeds and have now increased her TPN back up to 25. I have no words that bring me understanding, and the answers I once searched so desperately for seem to not matter. It just feels like we will never make it home.
It would seem that some around here are not as happy about the Christmas Cave as we are. We were informed tonight that we are no longer allowed to have our lights turned on for Ashley's Christmas Tree. They cited some hospital rule about not having lights displayed in patient treatment areas. There are lots of "rules" around here and they seem to follow the ones they want when they want. It is very sad to me to see that someone wanted to take away the small bit of home that Trish established in this place. Last year when we were in the hospital in Dallas,we set up the tree with it's lights and the staff was happy to bend the rules to make sure that Ash could celebrate Christmas with her roommate Kaleb. The rule could be overlooked if they chose to. We have had the lights on for 3 weeks and there was not a problem until tonight. It really upsets me that because someone wants to be a joy squasher they hurt my wife and made her cry by taking away my girls tie to home. I should go pray about my bad attitude.
Ashley had absolutely no idea what to do with the bottle. She thought it was a great toy to shake around but had no interest in it getting into her mouth. Next I tried putting it into a sippy cup. Again is was fun to shake around and watch the milk splash all around, but no interest in actually ingesting it. OK, I have one more idea. How about putting the milk in a spoon and then feeding her by spoon. BINGO!! We were able to feed her 12 spoons. If I had to guess I would have to say that there was about 1cc per spoon. They were not anywhere near full spoonfuls, but hey we have to start somewhere and she is just a little pickle. After the "feeding frenzy" we laid her down for a nap and Trish and I went to get some lunch and turn in our application for our new apartment.
This morning we have received the good news that Ashley's feedings are going so well that she will be given a "bottle of Blessing"! Can you believe it? Dave and I are so excited that Ashley has tolerated her feedings. The surgeon asked if she had been given anything by mouth yet and when we told her "No, but we think she is ready." She said she thought we should try it. Ashley's daddy requested a pink bottle for his princess and they actually gave us one. They will be increasing her feeds to 25ccs per hour and going DOWN on her TPN to 15! She has never been on this low of an amount. We are doing the happy dance in our Christmas Cave this morning. I really don't expect her to actually want to drink it in the beginning, but it is a skill I am sure she can learn again. How blessed we feel this morning! Ash looks better this morning than she has since we arrived. Her color is beautiful, her smile is charming, her laugh is contagious, and her eyes are twinkling. She is oohing and awing at all of her toys, and she is playing peek-a-boo and patty cake with her daddy. My heart is so blessed by the spirit that I see in her. She looks good and I think she actually feels good too.
For He is GOOD!" How this verse has taken on new meaning in my life. This year as I sit next to my best friend, and we watch our tiny baby girl sleeping in this bed I am more than thankful. Thankfullness, gratitude, appreciation... There are no words to describe the feelings that can be found inside of my heart.
This morning as I entered the Christmas Cave I honestly thought that somehow, someway David had snuck an oven into our room and was baking a turkey. The heat was so intense! I looked at him all snuggled in the bed next to Ashley and realized he wasn't trying to bake a turkey, he was baking a Gherkin! The first thing I did was strip off all of those blankets and turn the thermostat back down from 75 degrees to my comfortable 65. This guy is crazy! We can't live in a Christmas cave if its not cold enough to hang turkeys in.
I spent the morning playing with Ash. Biting her fingers and letting her bite mine. I did find out that her liver has a direct attachment to her jaw. The last time I put my finger in her mouth was before her transplant and her little baby Gherkin teeth would try there best to bite me. She now has a new liver and it seems to have strengthened her jaw muscles. I learned where not to put my finger in the future.
Dave and I have just found out that young Jordan will not recover. The family has decided to donate her organs in a most difficult time. My heart has been so heavy for her today, and now my heart just breaks at the loss her family is experiencing. How touched I am knowing that she and her precious family will save so many lives with their gift of organ donation. Dave and I feel thankful for their decision to donate Jordan's organs. We know that without our donor family's gift our sweet Ashley would not be with us today. I pray they will someday know how much they have touched us with their decision. Tonight all that I could write about our day here in Omaha seems so insignificant compared to what has taken place in the life of this family. As precious as my daughters are to me, I know that Jordan was just as precious to her family. Again, I can't pretend to understand the whys or hows things must happen, but I do know that He is good and that He loves Jordan and her family more than words could describe. My thoughts and prayers are with them, and I pray that someday they will hold and see their sweet daughter again. Until then she will be resting safely in the arms of the One who created her. Please remember to pray for them.
This morning I feel so renewed and refreshed by a good nights sleep. It is amazing how good it feels to lay down in a bed after sleeping in a chair for 2 months. Although I am feeling well rested and chipper, poor Dave is very tired. He did not fall asleep until after 4:00a.m. and Ashley Kate had him up playing by 7:00a.m. He acts like it bothered him, but he is just trying to play tough. He is so in love with this baby girl that he would sit up night after night playing with her. My heart is always so blessed as I sit back and just watch him with her. They rocked and sang and played for hours on end. She is so happy to see him now that she figured out it was her dad who snuck into the "cave" late last night. It took her a minute because she had just gotten up from a 4 hour nap. This morning I found him laying next to her in her bed playing peek-a -boo under her blankets. She is so funny as she "grunts" and squeels with excitement as he found her hiding. To see the two of them playing just does so much for me. I love his visits as much as she does.
I made it and all of the nurses around here where asking about my flight. I am so sorry to report to you that my flight was uneventful. No harassment by the TSA for me today.
The air in the Christmas Cave is filled with excitement tonight as we count down the hours until Dave arrives. Only 2 more and he should walk through the door. I am so happy. I can feel the smile on my face tonight. Ashley has been sleeping all evening so I hope her daddy is ready to stay up and play all night long. She is resting up. I usually try not to think about how much I miss seeing Dave everyday, but when I know he is coming the waiting seems to take forever. Have you ever had a really good friend? I mean the kind of friend who allows you to be whoever you really are. The kind of friend who just wants to hang out even if you have absolutely nothing to do? The kind of friend who can make you laugh at the dumbest things? Of all the people in the world who could have become my very best friend I am so thankful that God made David mine. He just makes me happy. I am so looking forward to watching him spend time with Ashley this week. We have nothing to do but absorb every moment with our daughter. I just can't wait for him to get here so we can start. I just know we are going to be making memories that will carry me through until he brings the kids to visit us at Christmas.
It is so funny how my perspective has changed over the last few months. I have been an avid scrapbooker for over 8 years now, and photos of my children are my passion in life. There is nothing I love more than to look at pictures of Blake, Allison, and Ashley. My favorite photos of the children are those that show the changing of their ages. Pictures of their hands and feet are on the absolute top of my list. Today I became so excited as the doctor presented me with one of the most beautiful photographs I had ever seen. It was "text book" perfect according to Ashley's doctor. As I looked upon this beautiful photo something struck me as funny. To anyone else it would probably be grotesque and confusing, but to Ashley's mom this was ranking up there with one of the best pictures in my photo collection. I no longer look for the perfect shot of Ashley's face or her eyes. It's not pictures of her fingers or toes that put the biggest smile on my heart. These days my favorite pictures are of her "guts". Thats right. Her intestine. To be specific, her small intestine. There is just something about a nice pink photo of this long, circular tube that warms my heart. Not only do I find beauty in the fact that it looks healthy, but I find beauty in it because it too, just like my Ashley was a gift. A priceless gift. Something that measures far beyond riches or treasures.
Ashley's day has been a little slow so far, but things will begin to pick back up again around 3:00. Today they will scope Ash's new intestine to look for any unusual signs. So far all of her biopsy's have shown normal cells and we have been given the most "beautiful" pictures of it. I am praying for the same to happen today. After the scope they will actually turn her feeds back on and instead of one "thimble" full of formula at a time she will receive 2! Blessed beyond measure is how we are feeling about this new. She will be allowed 10ccs an hour. I am very excited they feel like we are ready for an increase. Ash has a very sore throat from the breathing tube that was in during her procedure yesterday. She is coughing and crying because it is so sore. She seems a little sad today because of this, but other than that she looks really good. She is now taking her 1st nap of the day and I am planning on joining her soon.
I think they are all crazy. They stopped Ashley's feedings so they could do another "procedure" on the Gherkin later today. I think they are all NUTS!!
Good Morning from Ashley's Christmas Cave here in Omaha. We have been awake visiting with each other for half an hour now. She is full of spirit this morning. We have been talking a little about the Christmas Story while Ash plays with her nativity set. She emptys each person and animal out of the stable and holds them up for me to see. She listens to me explain to her just what role they play in the story of Christmas and nods her head so attentively as I talk. Then all of a sudden she has heard enough about that person and out of her little hand, off of the bed, and across the room they fly. O.K. I say then we move on to the next character. Night before last as we "talked" about the Christmas Story I looked over at her and she had the baby Jesus in her tiny little hands. How precious I thought to my self as I was preparing to tell Ash all about the love He had for her when all of a sudden across the room He flew. Now I am really alright with watching the angel take flight from her hand, the camel and donkey don't really bother me, the wise men in my opinion really belong on the other side of the room to signify that they have a long way to travel before arriving to see the child, but baby Jesus? This just doesn't sit well with me. After searching for what seemed like an hour I finally found Him under my "favorite" recliner. (If her brother Blake could only see Ashley's pitching arm I know he would be proud!) I was so afraid we had lost Him for good. I tried to explain to Ash that we could not have a nativity set without the baby Jesus in it and she nodded her head like she understood exactly what I meant. I am amazed at how she knows if the proper response to my questions is either a shake of the head yes or a shake of the head no. She is just so smart! So today I will try and teach my sweet girl that it is not nice to throw the baby Jesus across the room. How privelaged I feel to be the one chosen to teach her all about how much He loves her.
Ashley's feedings are going well thus far. She gets 5cc per hour and it amazes me when I think of how little that is. She is getting less in 1 hour than I eat in 1 bite. It literally takes her 1 hour to eat the contents of a thimble. At the rate she is going now it would take her a year to eat the amount I had for dinner. She is going to have to pick it up a bit if she is going to eat tacos with her dad some day. Sometimes when I see her I tell her she is a big pickle, but today was a reminder that she will always be my little Gherkin.
Last night I met a mom of another transplant patient who had come back into the PICU because of a virus. While visiting with her I learned that her daughter was actually 3 weeks younger than my Ashley. The thing that amazed me the most was how big and strong this little one looked. She weighs 25 lbs. and is walking and talking. She had a full head of hair and I would have never guessed that the girls were the same age. As I relayed this information to Dave late last night my heart almost hurt as I realized how tiny my Ashley is. She doesn't walk or talk. She doesn't even crawl or sit up by herself. I found myself wondering how will we ever get there? It seems like Ashley's battles have been spent fighting other issues. We haven't even begun to tackle these other things.
I am so excited to report to everyone that I think Ashley looks GREAT! She has never looked so good or so comfortable after a procedure. She is a little puffy and swollen, but I think she looked that way before she ever went in. She is now sitting up in a hot pink boppy pillow watching Blues Clues and chewing on the camel from her nativity set. She is NOT on the ventilator and I am praising God for His goodness. She is breathing comfortably at this point and is not showing an elevation in her temp or her blood pressure. I think she looks phenominal! I could not be happier. The report I was given is that the tube is in place and that we are actually going to begin feeding her 5ccs per hour today. I am so happy. The feedings will be the true test. We will know very shortly if things are going to work for her or not, but I can't help but tell you that I think we may have finally figured it out. Thank you so much for praying.
Last night I had one of those dreams that was just so real. I thought Trish was laying next to me, but when I opened my eyes and looked all I saw the the empty side of the bed. It has been 2 months now that she has not been there and just beyond the empty side of the bed is an empty baby bed. In my dream is just seemed so real.
Something is up tonight. I am hoping it is just me being nervous about tomorrow's procedure. I just don't feel good tonight, and I can not get sick! I have had tooth ache for a couple of days now and it seems to be getting worse. Now the entire left side of my head is hurting. I have a headache, and ear ache and a sore throat. What is going on? I seem to be a little bit jumpy tonight as well, and poor Dave is catching the brunt of it. I think this is all because of nerves. At least I hope it is. I just can not afford to get sick because it would be too dangerous for Ashley. I know that God knows this and He also knows how bad I am feeling. I am praying that tomorrow all of these "aches " will just be gone.
I am so humbled each time I look at my Ashley and I realize that she is not only representative of one tiny life but now two. As I was playing with Ash by her Christmas tree this morning and showing her all of her special ornaments I began telling her about each one and who had given them to her. She was listening to me so intently and watching them all sparkle in the lights. All of a sudden the most beautiful thought came to me. Each ornament on her tree tells the story of someone who loves her. How precious would it be to have an ornament that told of the little one who gave Ashley her second chance at life and representated the love that went into the gift that she received. I was so excited at the thought of hanging this honorary ornament in memory of our baby donor that I got right up and went to order it. I immediately knew which ornament it had to be. I went to the James Avery websight and found the silver angel ornament. I am having it engraved with the the words,"In memory of a tiny life, who gave so much" Sept. 26, 2006. I can't wait to show it to Ash this year and every year as she grows up and learns of the gift our donor family gave to her. My heart is glowing with excitement as I wait for it to arrive. I have also ordered 3 more tiny angel charms to hang on her tree to represent the little lives we have witnessed leaving this place while we have been here. I never want to forget those precious babies and those who loved them so much. I have learned so much in this place and I know that life is a gift. Nothing promised or earned, just a magnificent gift from the One who loves us. Our children are so very precious and valuable. Each day that they are with us is nothing short of amazing.
If you have to live in a hospital room you might as well make it as personal and "homey" as possible. This is what I have tried to accomplish in Ashley's room. We have affectionately named it the "Christmas Cave". When you walk into her room you automatically notice a lovely aroma that comes from her Glade plug in. This alone has made her room a favorite here on the floor. The pleasant smell just greets you at the door and invites you to come on in and stay a while. The next thing you will notice is the sound of beautiful Christmas carols playing on her pink CD player at the head of her bed. This is personally my favorite part. The sound of Christmas music just puts me in a happy mood, and the fact that it comes from the cutest baby girl pink player is just the icing on the cake for me. If you begin to scan the room to the left you will see one of those standard hospital tables that are found in every room, but ours is so much more than just a table. This our little piece of home. On Ashley's tabel sits her Christmas tree. Again this is not just any tree, but it is a baby girls Christmas tree. The lights are purple and white and they twinkle just like the light in Ashley's eyes. She loves to stare at them for hours. On the branches of the tree are tied pink ribbons. Each ornament that we have chosen for Ashley is hung not by just any hanger but by pink ribbons instead. The ornaments themselves are all designed for a special little girl. Along with her ornaments hang pictures in tiny silver frames of Blake, Allison, and Ashley. We also have hung the words faith, hope, and noel all over the tree. They are also silver and are hung on pink satin ribbons. The rest of the tree is covered with silvery, white snowflakes that sparkle in the light and we have just added some long silver icicles to top it all off. They are spirals covered in silver glitter and hung on ribbons. Under her tree sits a silver frame that holds a picture of my three most precious gifts from the Father. Blake and his two sisters sit smiling at us from under there. I have many precious hours as I sit and "ponder" in my heart all that He has planned for our family. Oh! how we love Christmas time.
I am sitting here alone in my house and I realized something weird. I have a family of 5 and two of us are in Nebraska, two in Oklahoma and 1 in Texas. When Thanksgiving rolls around we will have 3 in Nebraska and 2 in Oklahoma. Even though we will be separated we have so much to be thankful for this year. Our Gherkin has progressed so far since last year in some ways, and in other ways it seems like there is no progress at all. Just the fact that she is still alive is a blessing we were not sure we would have. It is difficult spending so much time apart, but we are thankful for where we are. (Ash has had her transplant as opposed to being here at home and us watching her slowly die while she waits)
She did it! I actually heard it! Last night as my sweet Ashley was refusing to sleep I had leaned back in my recliner and I heard this very tiny, scratchy voice say, "Ma ma". I thought I had dreamed it so I sat up and looked at her then she said it again, and again, and again. I asked her, "Ashley, do you love mama?" and she nodded her head "yes". We played this question and answer game for a long time as I listened to the sweetest sound I have heard since coming to Omaha. "Ashley, who loves you?" She proudly replied, "My mama". Oh! how much I enjoyed it. Just when I need it the most He continues to lift me up and bless my heart. I love that He knows my every thought and my every need. As scratchy and hoarse as she is it was absolutely the most beautiful, little voice I have ever heard.
Tonight the kids made it in to their Aunt Kathy's house after what sounds to be quite an adventure. Dave said that Nan called at least 4 times asking for directions during the trip. My mom is not the best at remebering directions, but I am so thankful that they arrived at their destination. My sister called to let me know that they had made it in, and my heart began to smile as I could hear my Allison just rattling on and on in the background as she caught up with her cousins. Even though I am missing Blake and Allie, I am so very glad they decided to go visit in Oklahoma. My heart is smiling as I think of all the fun they will have there with my sisters.