Monday November 30, 2009

Not much new to add today. Ashley was exhausted all day long. She didn't feel like going anywhere. We did take a brief outing to KFC to get her some potatoes and gravy. That is the only food the she can eat and not run immediately to the bathroom. Her protein loss is terrible again! Almost everything she eats goes right through her. I know her protein levels are getting very low again. She is having body aches all the time now. Last night, she was in so much pain, she wanted a double dose of morphine. Her legs were so weak, she had a hard time walking to the bathroom. The body aches and increasing weakness are directly related to the PLE. There isn't a darn thing they can do about that. We have her on all the meds she can be on. The IV nutrition didn't stop the PLE, but it did keep her protein levels in the correct range so she wouldn't have the body aches, stomach discomfort, and constant trips to the bathroom. It was a comfort measure, and now that it is gone, I can see just how comfortable it kept her. She is flat out miserable. She is weak, and she isn't able to eat much. Eating is a chore when she does attempt it. Nothing stays in her system. I feel so helpless! I can't take anything away! I can't fix anything! The only tool I have is faith and prayer. Ashley was promised she wouldn't suffer more than she could handle. She was promised the Holy Ghost would be with her, to comfort her every step of the way. But she would have to ask, to pray for that help. Now is the time to remind her of that very special promise.

I do have to say, the weekend coming to a close was bittersweet for everyone. The one thought that lingered in our minds: will this be the last Thanksgiving with our precious angel? We have no idea.

My dear friends and family, treasure up every moment with your family and friends. You never know when someone you love will be taken from this earth. Make every day count, even if it is in the smallest way.

Thanksgiving Memories (November 30, 2009)

We survived!! Ha ha ha! What a weekend! What a marathon! But what fun! David and Alicia arrived on Wednesday night. They were thankfully here on Thursday to help run interference with the children while dinner was prepared. The original plan was to eat dinner at 1:00. Unfortunately, our first group of Burley travelers were not able to get here quite that early. We ended up eating at 3:00, which is what we call Walquist Standard time. For those of you who know what Walquist standard time is, you are probably rolling on the floor right now. For those of you who don't know what that is, well, too bad for you! Ha ha ha ha! Just kidding! My family is known for being a little late to things. (Ok, let's face it, a LOT late.) So really, if you consider what normal is for us, we did eat on time. (0:

For Thanksgiving, we had my immediate family, Amy and Kris and their two kids, David and Alicia, my mom, Tammy, Burke, Katriel and Taylor. The food was plentiful. We ended up with so many leftovers! That was alright. The leftovers lasted us clear through Sunday. It was awesome!

Ashley had a good day Thanksgiving day. When Katriel came, she was delighted! The two cousins played dress up, did crafts, played music. They had so much fun together. It was good to see Ashley able to play and have fun for a little while. She even came with us to Shopko later that night. By the time bedtime came, Ashley was exhausted, but seemed to be holding alright. Her appetite wasn't good throughout the day, but she felt hungry enough to eat a small serving of potatoes and gravy and turkey.

Friday morning Ashley wasn't good. She woke up feeling very tired and her poor stomach was really gurgly. She didn't eat breakfast, didn't feel like it. We decided to do an activity that wouldn't require much energy. We pulled out our gingerbread village and worked on that for a while. Katriel and Ashley had a good time trying to get the pieces put together. You wouldn't think such a small thing would turn out to be a big project, but it was. We finally got all the houses assembled and let them dry. For a bit, I was beginning to wonder if I really was 10% smarter than that stinking village. (0:

In the afternoon, we had a nice surprise. Our wonderful social worker had arranged for a Santa Claus to come visit the house. So at 3:00, here came jolly old St. Nick. (0: He was such a nice man, who was very entertaining. Ashley doesn't believe in Santa Claus anymore, so at first, she was a little reluctant to have him come. It all worked out. He let us take pictures with the children and he told them wonderful stories. The younger kids, especially, were spellbound. I was so glad we were blessed to have such a fun opportunity.

In the early evening, my mom needed to make a run to the Book Nook and then a quick stop at the store to get some missing items for dinner. We made homemade chicken and noodles, which I was praying Ashley might be able to eat. Ashley was super tired so. She stayed with Tammy. We weren't planning to be gone for long. The rest of my siblings were on their way to the house, and we needed to get dinner done as quickly as possible. As it worked out, it took longer than planned at both Fred Meyer and the Book Nook. Chris, Jessica, their three kids, Dawn, Jaxon, and their other daughter, Alyssa, and my dad, got to the house before we returned from the store. The house was very loud, and Ashley was feeling poorly. She fell apart. When I got home, she was sobbing in the bedroom. Her body was aching all over. She was struggling to breathe. Her stomach was churning. It was awful! My siblings took over the rest of dinner, and I went in to take care of my angel.

She was in enough pain, she wanted morphine and atavan to calm her nerves. I helped her into the bathtub. The warm water helped with the body aches. For the rest of the night, she stayed in bed. Part of my family went out to Amy's house. In fact, sweet Amy ended up with most of the kids. With the noise level more under control, Ashley started feeling a little better. The medicine also helped I am sure. We were still up really late. Ashley had a hard time falling asleep. She was so desperately unhappy! I held her for a long time while she cried. She told me she felt like a really bad person. When I asked her why, she told me it was because she was so tired of hurting and suffering. She said she was upset that it hadn't been a good day, and she was afraid Heavenly Father would be unhappy with her for not being patient enough. She was trying to be strong, but she told me it was so hard! She said, "Mom, I am so tired of being sick. I am tired of hurting. I just want to feel good again. I need to be more grateful for this trial."

Talk about melt your heart right out of your chest! I know Ashley suffers a great deal more than she ever lets on. I know she deliberately doesn't tell me things because she doesn't want me to get upset. She has done that many times in the past. Her kind compassionate heart doesn't want anyone to be unhappy because of her, in any way shape or form.

Saturday was not a good day. Ashley again woke up exhausted. She stayed in bed for most of the morning. Amy and Dawn took some of the kids to see G-Force, but Ashley didn't want to go. I didn't either. We had so much to do to get ready for the baptism. And, the movie was in 3D. I can't handle motion at all right now. My dang ear is still infected. It has been well over a year now that I have been fighting off an infection in my left ear. It doesn't hurt too bad, but when it gets really plugged, I have horrible problems with dizziness and vertigo. It is a big problem I am contending with right now. I knew if I went to G-Force, I would get sick so fast! Yuck!

Jessica and I made a quick run over to Burlington Coat Factory to see if we could find Spencer a suit. I should have bought one by now, but it is really hard to find time away. We didn't have any luck, but we did find Alexis some darling dresses. Man it is fun to buy little girl baby clothes!!

When we arrived back home, Jason's grandma and grandpa had arrived from Utah. A little while later Jason's half-sister and his step mom came for a visit. Then it was craziness, literally, clear up till the time the baptism was to start. The grandkids were spread out between two houses. We had to figure out who was where and who needed what clothes taken to the church. Ashley was really sick. She couldn't get out of bed. She tried to get into her dress, but she had nothing left. She literally laid on the floor and sobbed. We all encouraged her to go back to bed and rest, but she was so worried she would hurt Spencer's feelings! We finally convinced her it was the right thing for her to stay home.

After several more funny adventures that I won't take time to mention here, the baptism started. It was a beautiful service and the spirit was so strong! Both Kasey and Spencer radiated with happiness. There were lots of members there from Amy's ward. For those of you who don't know, Kasey is 11, so it was so neat for him to see so many there, supporting him in this righteous decision. (0:

After the baptism, we went home to figure out what to eat for dinner. We originally wanted to go out for dinner, but with our sweet angel so desperately sick, we decided to go for take-out. Well, more adventures and two hours later, we finally ate dinner. I can't believe how tired everyone was by the time we all went to bed. I don't think the boys have ever fallen asleep so quickly!

Sunday morning, once again, Ashley was very sick. She didn't rest well. Her stomach was hurting. I was trying my best to take care of her. How wonderful it was to have so many family members here helping not only with Ashley, but with the dinner preparation. We had to feed my whole family again, so there was lots to be done. The saying, "Many hands makes light work" rang true. In only a short time, the food was cooking. The desserts were prepared. The living room was re-assembled and picked up. All the mattresses and blankets were put away. I never could have finished all by myself. What an amazing family I have! (0:

We went out to the confirmation, came home and ate, and then one by one, our family members headed back home. It was an amazing weekend! The kids had fun. Us adults had a blast talking and laughing and being silly. Everything worked out perfectly. Ashley didn't fare so well, but hopefully, in the coming week, we can rest her up so she will feel a little better.

Hope Thanksgiving was wonderful for everyone!!!

AShley's Health Explained #4

When I left off before, it was late in the evening, and our little angel was finally out of the OR. When we left her that night, and went to the Ronald McDonald house, I don't think we had ever been so exhausted. I was about 17 weeks pregnant with Austin at the time, so I was even more tired than I would have normally been. What they didn't tell us when we left the hospital, was that they didn't know if Ashley would live through the night. Earlier that day, we had witnessed another miracle. They told us our daughter would die in that operating room. But she didn't. She lived. Heavenly Father had a plan for her life, and it wasn't time for her to return to him.

The next day and the few following were awful. I won't lie. She looked awful. When they were finally able to close her chest, it was such a blessing. That meant they didn't have to keep her paralyzed anymore. She stared waking up a bit and moving around. But then the fight with the ventilator began. She would get secretions in her lungs and they would have to suck them out. When they did that, it would make her feel like she couldn't breathe. She would freak out and choke and struggle. It was a nightmare!!!! Then, the wonderful day came when they decided to take her off the vent. It became apparent shortly after extubation, there was a problem. Our rejoicing turned to tears. In her surgery, the siatic nerve was nicked. That caused Ashley's diaphragm to be paralyzed. The diaphragm then ballooned up and collapsed her lung, which in turn made it impossible for her to breathe. Ashley was working so hard, she was a nervous wreck. They made the decision to re-intubate her, and scheduled her for immediate surgery to plicate her diaphragm so it would not collapse the lung again. She went into surgery for that the following day. That surgery was successful and Ashley survived.

They again tried to wean her off the vent, but her oxygen levels were so low, they were afraid to remove it. Her lungs were very wet, especially the left lung that had been collapsed by the diaphragm. They decided to leave her on the vent for a little longer, much to my utter dismay. In the mean time, she was taken to the cath lab to determine the cause of her extremely low saturation levels. She was running around 73% at that time on 100% oxygen on the vent. In the cath, they decided a BT shunt was needed to help bring more oxygen rich blood flow into her lungs, which would help her sats. Thus, another surgery.

In the mean time, her neck line had leaked. The leak was not discovered in time and Ashley developed a large bedsore on her neck. That had to immediately be addressed. The neck line was removed and they put a special dressing over the sore. It was a sticky dressing, and every time they changed it, Ashley would cry in pain. It would pull the little hairs on her neck. It was awful!!

Ashley also at this time, started spiking high fevers, often over 103. It was so scary! Every time she would spike a fever, they would have to draw blood and take urine directly from her bladder via straight catherization. That in itself was awful for our little angel. They felt like she had an infection so they started her on some high powered antibiotics. Every time they ran a bolus of antibiotics into one of her veins, the vein would blow. They would have to call the IV team in to place another IV, which was always difficult, given how delicate her veins already were. They did finally discover she had a C difficle infection from all the antibiotics she had been given. When they got Ashley on the right medication, her fevers finally went away.

Ok, I am falling asleep at the keyboard. I think it is time to hit the sack. Have a great night y'all!!!! (0:

Thursday November 26, 2009

WOW! What a day! I am totally exhausted tonight, in every way. But I couldn't be happier about the events of the day. Let me start out by expressing thanks for all of our dear friends and family for their prayers, notes, care packages, phone calls, hugs.....I could go on and on. We have literally had people pouring into our lives every day. I don't have a chance to feel sad. There are too many wonderful people who are always there, offering to help in anyway they can. Even Jason's wonderful boss had sacrificed multiple times so Jason could be here at home, with us. There are no words to express how thankful I am to everyone! You are our angels! Don't you every think angels aren't real. I am here today to tell you, they are real!! And sometimes those angels come in the form of good friends and family! (0:

Today started with a bang. The boys were up at the crack of dawn, or at least it seemed that way. Ashley and I stayed up late again last night. She was very tired, but we still didn't to sleep until almost 12:30. I had originally planned to get up early, but I was too tired, and didn't get up before the boys. It didn't help that Preston came in and crawled on my head. Fortunately, Ashley was able to sleep in a little bit, even with her silly brother rolling around in the covers.

We ate breakfast and then set to preparing our Thanksgiving dinner. We had planned to eat at 1:00, but with unforeseen delays, didn't get to eat until 3:00. We had David and Alicia, my brother and his wife. My sister, Amy, her husband Kris, and their two kids, Kasey and Zack. We also had my mom, my sister Tammy, my nephew Taylor, my neice Katriel, and my nephew Burke. I have to say, with all those kids here, they were angels. They got a little rowdy a couple of times, but overall, they didn't fight. They were all so well behaved. I was worried how Ashley would handle the confusion, but it was fine. She played with Katriel. They dressed up and did crafts. When Ashley got tired, she laid down on her Aunt Alicia and took a nap. It worked out so nicely. Ashley even ate some potatoes and gravy and turkey! We were so thrilled she ate!!

Tonight while the boys watched a little football, us girls went out to Shopko to grab a few things. Ashley felt good enough to come, although by the time we arrived back home, she was exhausted. She spent the rest of the night with her wonderful Aunt Tammy, watching TV and resting.

Tomorrow the rest of the family will come. My dad wasn't feeling well today, so he is planning to come with my other brother, Chris, and his family tomorrow evening. My older sister, Dawn, and her husband, Jaxon and their little Alyssa will come tomorrow night as well. Jason's grandparents will be here on Saturday afternoon. We have everything set for the baptism on Saturday. Spencer is so excited and I know Kasey is too! What a wonderful blessing to have all my siblings and their families here together for this wonderful holiday and baptism all in one. It is bittersweet for me. On one hand, we love to be together and visit. But on the other, there is always the possibility that we won't have Ashley the next time we gather. That thought lingers in my mind, and I get so sad! I do think it is better not to dwell on that thought. We have her still and every day we get with her is a gift from God. We will keep looking for the silver lining. It is always there! (0:

A special story

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I wanted to add this story to my blog on Ashley, especially on this day of thanks. I haven't written much lately on how grateful I am for all the good things in our life. Ashley's problems have blessed our family so very much! We have grown in ways that would not have been possible without the trials that we have dealt with over the years. I read this story a couple of months back in a journal entry, written by a wonderful lady in my ward, whose newborn baby was suffering from multiple health problems. It really made me think. Life with a chronically ill child is never easy, but there are so many blessings that come with such a trial. I want everyone to know, I am so grateful Ashley has been blessed to be part of our family. Our trip to "Holland" has been a good one.

Wednesday November 25, 2009

Not a good day at all today. Ashley was exhausted from the start. When she woke up, her eyes were puffy and red. Her whole face was swollen. She looked so dull and gray. It scared me to death! She had a hard time falling asleep last night and was up really late. I know not being able to sleep doesn't help anything. But man she looked awful!

And today was not a quiet day. The boys did not have school, so they were all home. Austin had two appointments, one to see his counselor and one to see the nurse practioner to get a refill on his ADHD medications. In the middle of that, I had to make a quick run to the store, and we went to see Jason and take him lunch. Ashley was feeling too poorly to stay home. She wanted to stay right by my side. I felt so bad! The first appointment was at 11:00 and the second wasn't until 2:30. So she had to make three trips out today. By this evening, it was all she could do to walk around the house. Her little body was plain worn out! She would have felt a little better if she would have worn her oxygen while she was resting, but she is so resistant. Silly girl!!

The one new symptom she had today was an episode of irregular heart beats. It was after Austin's first appointment, when we were on the way to the store. She all of the sudden clutched her chest and leaned her head forward. She told me her heart was acting strangely, and that she was super dizzy. I felt her heart, and it was beating fast, then slow, then it would pause, and then go fast again. I asked her if she wanted to go back home. I hadn't taken the time to fill her portable oxygen. I should never leave the house without it. It just isn't a good idea, but being in the rush I was, I did. She didn't want to. So when we got to the store, I sat in the car with her and the boys for a little bit. Eventually, she felt good enough to go inside, but I was a nervous wreck! One of my worst fears is that something will happen to her while we are in a store. The first response of anyone around me would be to call 911, which is NOT what we want. We do have a DNR, (do not resusitate) order, and if something did happen, we would call the hospice nurses and they would come and help us through the situation. But to explain that to bystanders would be awful!! I hope and pray, that we never have to deal with a problem like that in a store. It would be horrific! Anyway, she looked pale, and I hurried speedy quick, so we could get home.

Ashley's appetite was still poor today. I was so frantic tonight, I begged her to choose anything, even the smallest thing, for me to fix or buy her. I wanted to get some fuel into her body! She finally said she would eat a small mashed potato and gravy from KFC. I was thrilled! So she and I went to KFC and got potatoes and gravy. She ate every bite. I was sooooooooooo grateful!!

She continues to take atavan and morphine at bedtime to help her to rest. Tonight she was itchy, so I gave her a dose of benedryl. Then she was really loopy, but the itching went away. David and Alicia, (my brother and his wife), arrived at our house around 11:30. We had a nice visit with them. Ashley was so happy they were able to come! (0: She loves her uncle and new aunt! We are all looking forward to a beautiful day together tomorrow!

Tuesday November 24, 2009

We had a lovely day today. Jason was able to come home in the early afternoon so he could spend some time at home. Ashley felt good enough today, she wanted to go to see New Moon. I was actually surprised she felt well enough to go. She stayed in bed all morning long. It was so nice to see her want to go out for a bit. All three of us went to the 12:00 showing of New Moon. That is one amazing show!! Ashley really liked it! (0: We all did!!

After we picked up the boys from school, I had to run to the grocery store to gather a few more things for Thanksgiving day. Ashley was exhausted, but she really wanted to come. So that is what she did. By the time we got home though, she was ready to rest. She spent the rest of the night in bed, watching TV and relaxing.

Her appetite was still not good today. I am afraid this is our new norm now. She is at least trying to eat a little every day. But it isn't much. I am so grateful for this day though. We were able to make some really fun memories, and for that, I will always be grateful!!

Ashley's Health Explained #3

Before I elaborate more on this surgery, I need to explain a little more about Ashley's heart defects, so you can understand better why it was so hard to formulate a plan beforehand.

Ashley was born with a coarchtation, which means her arch was narrow at the top. In addition, her arch came off the wrong side of the heart. In the first surgery, they opened up the aorta, and grafted in material, making the archway a little larger. She still suffers from a narrow arch today, but was never strong enough to attempt another repair.

Ashley also had a large VSD, ventricular septal defect, or hole between her ventricles. In her heart, her ventricles are in reverse position. Her right ventricle is on the left side and the left ventricle is on the right side. The left ventricle, on the right side, was hypoplastic, meaning it was underdeveloped and small.

She also had a small mitral valve. That valve became a big problem in this surgery, as did the small ventricle. She also had a transposition of the great vessels. That means the two major vessels that carry blood away from the heart, the aorta and the pulmonary artery, are switched or transposed. Thus, her lungs would be in danger of flooding with blood. That is where the pulmonary banding came into play. They placed the band to restrict blood flow to the lungs.

Additionally, Ashley had an interrupted inferior vena cava. The blood from the lower half of her body reached the heart, but through an intricate network of strange vessels. They still to this day, can't explain fully how her blood flows to her heart from the lower part of her body.

So given all this, the plan was to place a patch between the two ventricles. The surgeon did not want to fix the transposition of the great vessels, but would leave them like the were. I can't recall now why that was not attempted. But I still remember how worried the surgeon was going in to this surgery. With Ashley's strange blood flow and small ventricle and mitral valve, he had no idea if creating a four-chambered heart would even work. He told us he would do his best to follow the plan. We all prayed for days for this wonderful surgeon. I trusted him with all my heart to do what was best for our little angel.

The surgery began, and there was a nurse that came back and forth between the OR and the waiting room to keep us informed. Things seemed to be going well, and then all of the sudden, the nurse came into the waiting room and took all of us to a separate room, where we were told after the patch was placed, and Ashley was weaned off the bypass machine, she had crashed on them. Her blood would not flow across the mitral valve and into the ventricle below. We were told Ashley would most likely never come out of the operating room alive. I remember crying and crying, Jason holding me. We were all in tears, and not a word was spoken. But everyone prayed! We prayed like we have never prayed before. But you know, I didn't ask for Ashley's life to be spared. I knew at that point, her life was in Heavenly Father's hands. I prayed that no matter what happened, we would be able to accept His will for our daughter.

Not more than an hour after we had such dark news, our wonderful cardiologist came into the room. When she heard how scary things were in the OR, she scrubbed up and went into the room to be with Ashley. She even had a broken ankle at the time and was on crutches! We so love Dr. Etheridge. She has always, and continues to this day, to go above and beyond for our angel. It was not an accident so many years ago, we were given her as our cardiologist.

Anyway, she came into the room and told us, "I don't know what you are doing in this room, but whatever it is, it is working." She told us the surgeon had torn off the patch, and had performed a Glenn procedure on Ashley. The Glenn procedure is when they take the superior vena cava and sew it directly into the pulmonary artery. Thus, the blood, from the top half of the body, can bypass the heart and go directly to the lungs. The procedure is normally done when one of the two ventricles cannot pump blood effectively, as was the case with Ashley. Her blood was able to bypass her little ventricle. Her other ventricle then became the ventricle that pumped blood around her body. In addition, a hole was created between the atriums.

More than 10 hours after her surgery began, she was taken out of the OR. But, she started bleeding through one of her chest tubes and had to be taken back into surgery. They stopped the bleeding, thankfully, and two more painful and long hours following, we were finally taken into the pediatric intensive care unit to see her. She looked awful!! I remember not even recognizing her! Her face was horribly swollen from all the fluids given during surgery. Because her heart was so big following surgery, they were unable to close her chest. She had a huge dressing across her entire chest. And of course, tubes everywhere! Neck line, art-line, IV's, catheter, ventilator, internal pacing wires, four chest tubes, tube in the nose to keep the stomach drained.......it went on and on. They kept her paralyzed, because her chest was open, so she couldn't move or blink or anything. But she was alive! At least for one more day, and we couldn't have been more grateful!

Ok, more to come! I am so tired right now and Ashley needs me! Have a good night!

Monday November 23, 2009

Today wasn't a good day at all. Ashley had a hard time sleeping last night, so she was very exhausted from the get go. She woke up with the red, puffy eyes and felt light-headed. I told her to go back to bed and rest, which she did. She stayed in bed all morning long. Her appetite was terrible. In desperation, we went out to McDonald's in the early afternoon to get her some chicken nuggets. She did take a few bites of those, but not much. She did try to eat cup of noodles after the boys came home from school. Again, only a few bites. That was all she ate the whole day.

After school today, Jason, Ashley and myself went to Costco to start gathering things for Thanksgiving. I wasn't too hip on Ashley coming, but she really wanted to get out of the house. We were at the store for almost an hour, and when she got home, she went right into the bedroom and laid down. She had started having pain in her neck which radiated up to her head and made her feel sick. I gave her some morphine and she immediately fell asleep for almost two hours. Outings take so much out of her these days. But I won't ever deny her the time away from home. If she wants to go out, she can go out. Every day counts. Even if it means she gets exhausted afterwards, she enjoys the chance to be away from her home prison, (and yes, it can seem like that!!)

When she woke up, it was after 8:00 and she came into the living room and spent the rest of the night curled up on the couch. The one good thing about today: she was so happy to get to help collect food for Thanksgiving! I know she is looking forward to this weekend. I pray she will be strong enough to handle all the company and commotion that will accompany the holiday. We have a plan in place for her, just in case it gets to be too much. And I know my wonderful family, as well as Jason's family, understand just how delicate she is. I know it will be alright.

Ashley's Health Explained #2

Beginning where I left off, Ashley had her first heart surgery when she was 2 1/2 months old. At that time, she weighed 5 lbs 13 oz. She was super tiny, but she came through the first surgery with flying colors. In that surgery, they fixed her narrow aortic arch, and put a band on her pulmonary artery, which was coming off the wrong side of her heart, flooding her lungs with blood. I still remember how shocked I was to see her after surgery! She was covered with tubes! There were several IV pumps by her bedside, running lots of medications into her tiny arm. We were so lucky that her first heart surgery was done under her arm. They call that a thoracotomy. I hope that is the right spelling. She came home within two weeks of having that surgery.

When we got her home, she still had a feeding tube in place. We fed her through that tube every four hours around the clock, but they only let her have 6 ounces of food per feeding. At one point, she pulled her tube out, which was something I greatly feared! We had been taught how to thread it back down her nose and into her stomach, but I was terrified of actually doing it! Jason was a trooper and he re-threaded it for me. Bless his heart!

Our little angel was not a happy baby at that time. The problem was, she was starving to death! When I finally, in desperation, called the hospital and asked them if she could eat more, they agreed. Thank goodness!! She was much happier with a full tummy!! Imagine that!! Ha ha ha!

They originally told us between the ages of 6 and 8 months of age, she would need another heart surgery. She would grow out of the PA band. They kept a close eye on her during that time period. We made trips to Salt Lake, from Evanston, nearly every month. She had two heart catherizations during this time, as well as an MRI of her heart, which was a fairly new procedure at that point. Fortunately she didn't require surgery again until she was 22 months old.

Around 12 months, Ashley had lots of trouble with refluxing. They were worried about her esophagus repair, that the area where they attached the esophagus to the stomach was too narrow and would require surgery to open it up. She threw up all the time. It was awful! After a harrowing procedure to see if her esophagus was ok, they discovered the area was a little narrow, but gave her some medication to help with her reflux, versus surgery. I couldn't have been more grateful!!!

Around the time she was 20 months old, she had another heart cath. They found out she had outgrown her PA band and had developed a significant pressure gradient below the band. Surgery would be required almost immediately to fix the dangerous problem. We scheduled her surgery. Only a week before we were to be in Salt Lake, Ashley got sick. They told us she had tonsilitis, and put her on strong antibiotics, but she still ran a fever for several days. I can't tell you how many blessings and prayers were given during that time. It was so frightening! We had no idea what to expect. The surgeon, given the extreme complexity of Ashley's heart, could only guess what he would do in the surgery. He couldn't say until he actually opened her up and tried what he thought would work.

When we arrived at Primary Children's and checked her in for surgery, she was still a little sick. They almost postponed her surgery, given the complicated and dangerous surgery that it would be. Fortunately, they finally decided to proceed. After all the pre-op check in, and speaking to the surgeon and nurse and others, we kissed her goodbye and watch her disappear down the hall, not knowing if we would ever see her again. Then, the awful wait!! Oh how hard it was to sit in the waiting room, anxiously waiting for even the smallest news from the OR.

Ok, Ashley needs her mommy now. Gotta go! Will write more later! (0:

Sunday November 22, 2009

Greetings family and friends! I didn't get to write last night. Ashley needed me, and I figured one day missed would be alright. (0:

Yesterday was just another fair day. Ashley was tired again from the moment she got up. She felt a little more out of breath and didn't eat hardly anything for most of the day. She did go with me when I made a brief trip to the store. When we got home, she was exhausted and spent the rest of the night laying in bed. My sister was able to bring her boys over for a visit. That brightened Ashley's spirits a bit. But at bedtime, it was all she could do to crawl into bed. I did give her ativan with the morphine last night, to help her relax enough to sleep.

She looked awful when she woke up this morning. Her oxygen fell off in the night and she woke up flat. When she lays flat for any length of time, her face gets very puffy. She has a harder time breathing, and her color looks bad. That is directly related to how her heart was fixed when she was two years old. We have dealt with that issue for a number of years now. In fact, at the age of 5 they ordered a hospital bed for her to keep her upright at night so she could breathe better. She still has a hospital bed, but she prefers to sleep by me at night. We stack her on lots of pillows, on all sides. Sometimes she will stay upright pretty well, but other nights she slides down and ends up flat in the morning. Then she looks bad when she wakes up.

Anyway, this morning wasn't the greatest for her. She got up and sat in the living room with us for a while. She still had no appetite. Right before we left for church, she did ask for some pizza. I was estactic!!!! She ate food!! YEA!!

When we got home from church, she looked a little better. Her eyes weren't red or puffy. Her lips weren't blue. She was smiling. That was short lived. After dinner, (and yes, she ate a few bites again!!!), she was exhausted and spent the rest of the night in bed. She confirmed my worst fear tonight. After family prayer, she and I were talking. She started to cry, and I asked her what was wrong. She told me that even the smallest things are becoming hard for her. She said even opening up Jason's laptop is a big strain for her. She said it is becoming harder for her to walk around the house. She said it is getting harder for her to breathe. She feels out of breathe most of the time now. I fear she holds back much of what she is really feeling from me. Her first concern tonight, when she told me these things, was that I would get upset and feel sad. She didn't want me to be sad. I know my angel holds back so much! She is such a tender-hearted, compassionate young lady. She doesn't want anyone to be sad or hurt or feel bad in anyway, especially her parents. So she suffers in silence. It breaks my heart!!! I told her no matter what, I want her to always tell me when she is feeling poorly. There are medications we can use to help with the breathing. I can encourage her to rest more and spend more quiet time sitting next to her, reading or watching TV with her. We are on the downward path. But I am grateful we got to see her smile today. She has such a beautiful smile!! Tomorrow is another day. I pray it might be as good of day as possible! (0:

Friday November 20, 2009

Today was another long day. Ashley woke up feeling very poorly. She was tired and her face was puffy. She had no appetite at all. I had visiting teaching appointments arranged for today, and she originally wanted to come with me, but when she woke up feeling so yucky, she decided to stay with Jason. Bless his golden heart! He stayed with her so I could go give service for a little while. I was very grateful.

When I arrived back home, the nurse was here. Today, since Nancy was off, Julie came. We had a nice visit with her. After assessing Ashley, Julie felt like she was doing as good as she could be. Julie felt like part of the fatigue we are fighting with right now is because of the morphine. Even though Ashley only takes a small dose at bedtime, it could still make her super tired as her body adjusts. I was glad to hear the nurse say she felt like Ashley was alright. On the bad days, I get so scared. The first thing that comes into my mind is the thought that our time with her is getting short. This is a selfish comment, but I am so not ready to let her go. I would never wish for her to suffer, or remain here on this earth suffering tremendously from day to day. But I can't imagine what life will be like when she isn't here anymore. It makes me ache from head to toe.

Tonight she is super tired again. She tried to eat some dinner. I fixed her chicken, hoping she might feel like eating a little. She loves chicken, but was only able to eat a few bites. She immediately left the table and came into our bedroom and fell asleep. She is still sleeping now.

They say that moms know things in their inner heart. They have a sense of what is to come. In my deepest heart, I feel like our time is so short! I feel like every day needs to count. I hope every day she might be able to be here at Christmas, but whether or not she will be is not in our hands. Tonight my heart feels so heavy!! I know I have to keep trusting in Heavenly Father.

Ashley's Health Explained #1

I wanted to share little pieces of Ashley's life story each night. I won't write much tonight. My little angel is sick and needs me, but I did want to start sharing with you all her story from the beginning.

At the time Ashely was born, Jason and I were living in Evanston, Wyoming. I was 35 weeks along, and had been struggling with contractions for a long time prior. (Pre-term labor got me with every child.) However, Jason was leaving to California on a business trip. My parents were leaving for Yellowstone Park for a teacher training class. I had decided to travel to Burley to stay with my younger brother and sister while Jason and my folks were gone. It never crossed my mind that I was in labor. Contractions were part of my every day life.

The day after I arrived in Burley, I put my siblings to bed and was cleaning up the house. I bent over to pick up something and my water broke. So there I was, no husband. No parents. I was scared to death!!! My grandparents ended up taking me to the hospital. Jason's flight landed in Salt Lake at 12 midnight, and he drove straight to Burley, but my parents weren't able to come home. I literally walked into the Burley hospital, not knowing any doctors there. It was a blessing that the doctor on call that night was Dr. Dowdle. When he first saw me, and how badly I was shaking, he immediately asked me if I would like a blessing. Together with the ultrasound man, they gave me blessing #1 that night. I immediately calmed down, and they began assessing me and the baby I was carrying. The first problem they saw, despite her tiny size, was that I only had a two vessel umbilical cord. They warned me that could mean more problems with the baby.

My grandpa Morgan came to the hospital a little while later. When he arrived, I was feeling shaky and nervous again. He then gave me another blessing, which in turn helped me to calm down and relax once again. Shortly after 3:00 a.m., Jason arrived at the hospital. I was progressing in my labor, but did not want an epidural. (Crazy, I know!!) I was in pain and having a hard time relaxing. Jason gave me blessing #3. The interesting part about this blessing was that he didn't bless me to be ok. He didn't bless the baby to be ok. He blessed me to have understanding and peace.

Shortly after 7:00 a.m., our little angel was born. She weighed 4 lbs 15 oz and was 19 inches long. Her delivery was very quick at the end. She wasn't doing well at all. Her heart rate kept dropping drastically. Dr. Dowdle told me later, any other doctor would most likely at that point, taken the baby by C-section, but he felt like that wasn't the right path to take. It meant a quick delivery, without an epidural, so it was tramatic and painful for me! But Ashley arrived without incident.

At birth, she was very blue and not breathing well. They immediately wisked her to the nursery for further assessment. Within a short time, the pediatrician on call came in and told us Ashley still wasn't doing well. She might have to be life-flighted, but at that point, they were trying to figure out what was causing her blueness and some other problems they saw.

We were definitely blessed again that night. This particular pediatrician had seen another baby similar to Ashley, and when she continued to have spit coming from her mouth, this wonderful doctor checked her for a rare, specific defect. They discovered her esophagus wasn't attached to her stomach. They also discovered she had sidus-inversus, meaning part of her organs were on the wrong side of the body. At that point, they knew she had to be life-flighted to Salt Lake. They came in and told us what was happening. She continued to struggle to breathe, and it was evident that our little angel was really sick. Before they took her away, Jason and my brother in law, Jaxon, gave her a blessing. Then, my little angel was loaded in an incubator, and taken to Primary Children's Hospital.

Jason went with Ashley to Salt Lake. They released me at 6:00 that night. My wonderful grandparents took me to Salt Lake the next day. Ashley was in surgery when I arrived. In that first surgery, they repaired her espophagus. While she was in surgery, Jason pulled me aside and told me that they had discovered multiple problems with Ashley's heart, in addition to the problems already found. At that point, with all that was wrong, they didn't think she would live very long. They didn't think she would survive the first surgery. But once again, she proved the doctors wrong. She came through that surgery and was doing as well as she could under the circumstances. It wasn't five days after her first surgery, that her intestines kinked. Once again, they had to take our angel into surgery. While in this surgery, they removed her appendix, since it was located on the left side.

After those first two surgeries, we had to wait. She was so small! They wanted her to grow to be almost 7 lbs before they attempted her first heart surgery. At that point, she weighed 4 lbs 6 oz. and as the days passed, she continued to gain only a few ounces at a time. Then she would lose. Then she would gain. At the time they decided they could wait no longer to operate on her heart, she only weighed 5 lbs 13 oz and Ashley was only two and a half months old.

I better go now and take care of my little girl. I will finish her story another day. I will say this: I have no doubt that we had numerous miracles surrounding Ashley's birth. It was a miracle she was born in Burley, where the elevation was lower and because of that, she was able to breathe better at birth. Second, we had Dr. Dowdle. He didn't take her C-section and my recovery was quick. Who knows how hard it would have been if I would have been stuck in Burley while my baby was three hours away!!!! Third, when she was born, her ductus stayed open. Most babies at birth, their ductus closes. Hers did not. If it had, she would have died immediately. They still to this day can't explain why it did not close.

Fourth, she survived not one, but two surgeries right in the first week of life. With how complicated her heart problems were, they were amazed she did so well. No one thought she would survive. Heavenly Father had a plan for her life, and he opened the doors for her to remain on the earth in those early days of life. So many miracles! And that isn't the end of them yet!! (0:

Thursday November 19, 2009

Today was not a good day. Ashley was completely exhausted all day long. She woke up feeling groggy and sick. She spent most of the day today laying in bed, resting. Her appetite was non-existant. This afternoon, she was feeling really chilled. When I felt her forehead to see if she had a fever, she felt warm to me. Her body was hurting. She did go take a bath and took some ibuprofin, which helped a little bit. Tonight it was all she could do to stay awake. The whole time we were reading scriptures, she laid on the couch with her eyes closed. She felt bad enough, she asked for morphine again. We did start that last night. She hasn't been sleeping as well, and would wake up in the night and couldn't fall back to sleep. She would have aches and pains, which didn't help matters. So the hospice nurse suggested we try a dose of morphine at bedtime to help her sleep better and not be in pain. Perhaps that was why she was so groggy today. I really have no idea. She didn't look well today. She was very puffy. Her color has been off. She looked very blue. Her fingers were dusky. For those of you who don't know, she now saturates in the low 70's, so when she turns gray, her blood oxygen levels are very low, sometimes reaching down in the the high 50's. It is very scary! She did oblige her mother today and wore her oxygen multiple times. Tonight she is plain miserable.

We did get our Christmas things up today. Ashley helped me as much as she could. It brought a smile to her face to see all the beautiful lights and Christmas tree. I was thankful something helped her to smile today. Keep praying for her. Days like today are so difficult!

Wednesday November 18, 2009

Today has been a good day. When Ashley got up this morning, she felt pretty good. Her breathing was ok. Her stomach was ok. She took a nice hot bath and worked on her crafts for a little while. This afternoon, she felt good enough for us to run to the store and to the library. Tonight she played with her brothers. It was so nice to see her have enough energy to talk and interact with them.

Her appetite was fair today. She was able to eat some soup in the mid-morning. Tonight she ate some yogurt and a little more soup and even tried some popcorn. It was so great to see her eat!! (0: She is super excited for tomorrow. We decided to put up our Christmas decorations early this year, per her request. (0: We took out all the Christmas things and lined them across the living room. That will be our project tomorrow. I do hope it makes her days happier to fill our home with the beautiful decorations. It is such a special time of year. It makes me so sad to think this will most likely be her last Christmas with us. But I won't dwell on that.

I have had several people ask me for a run down on Ashley's various defects and how we actually got to this point. I will write more on that tomorrow. She has such a complicated history. Yikes, it would take forever to explain everything. Ha ha ha! She is our little miracle child in so many ways.

We send out our love to everyone tonight! Hoping all those who are sick get well soon!! Hang in there my wonderful family!! (0:

QUICK NOTE

I have had a couple of people mention that they can't post a comment to this blog. I am not sure why, but if you would like to send any comments, you are welcome to post them to my facebook account or email me. My email is winn_family_1995@hotmail.com. Thanks so much for everyone's love and support! It means the world to me! Love you all!

Tuesday November 17, 2009

Tonight I am not going to write much. When I arrived home from Enrichment meeting, Ashley was in pain and not feeling good at all. Tonight her stomach is giving her fits. She has a headache and is having chest pains as well. I can always tell when she isn't feeling as good. You can see it in her eyes. You can see it in her countenance. Tonight it is very evident she isn't well, and she needs her mom. But overall, it was a great day today for her. She felt fairly good when she got up this morning. She ate a couple of times today, which was wonderful. She worked on her crafts this afternoon. I felt very good about how the day went.

Tonight we had a special presentation given by Jarom John at the end of our enrichment meeting. All I can say is WOW! The spirit was so strong! He spoke directly about the Savior, and how the atonement of Christ can personally bless our lives. He spoke about how the Savior knows each one of us, our individual pains, burdens, sorrows, sadness, etc. He felt our pain in the Garden of Gethsemene. As such, he knows how to succor us at all times. He is there, with his arms out, waiting for us to come to him, to let him heal our souls. I don't know if I can do this justice, but tonight I felt impressed that Ashley needs to be taught this very important principle. No one on this earth knows her pains. No one knows her inner burdens. But He does! By turning her towards our Savior, Jesus Christ, she can be blessed in ways that I can't even imagine. I know He knows my angel. I know it!! I have literally seen her, in the deepest depths of agony, covered with tubes and machines, struggling to stay alive. In those moments, when my earthly hands were tied, and I couldn't do anything to ease her pain, I raised my voice to heaven, pleading with the Father in her behalf. When I returned to her bedside, her little body was completely at peace. There was a look on her face the likes of which I hadn't ever seen before. It was like the earthly burden and pain were lifted from her. I knew, in that moment, the angels were holding my little girl. I knew Heavenly Father was watching over her. I know He will help her again now. How much gratitude I feel tonight for that inspired message! I know God lives! I know Jesus is the Christ, and that through him, we can be held and carried and lifted from the darkest abyss. May His peace be with everyone tonight!

One more thing, the scripture that he read tonight, that will forever more be a favorite, is Alma 7:11-12. I hope it touches you as much as it touched me.

Monday November 16, 2009

Greetings once again to all friends and family! Once again, we have much to be thankful for. Ashley had a rough week last week, mostly because of depression. But once again, because of the love of so many, Ashley and our family have been blessed.

Yesterday was a beautiful Sunday. I am always grateful for Sundays, for the chance to go to church and refresh my soul. When Ashley woke up yesterday, she was, of course, tired. She hadn't slept as well, and her body was aching again. The one thing she was worried about was not the physical discomfort of her body, it was the fact she wasn't feeling like attending church. I can't believe, given her situation when she woke up, and how tired she was, that she was even considering trying to go. We have assured her so many times that Heavenly Father loves her no matter what. He knows she is sick and needs to stay home. And that is ok. She finally seemed to be at peace with that.

The other thing that was bothering her yesterday was her Young Women Medallion. She was honored to receive it early. But her concern was that they only gave it to her because she was sick. She doesn't want to have it because she is sick. She wants to earn it. We have been working every night on her Personal Progress goals. And wonderful Jennifer Montz, bless her heart, has been following us closely to help us with this quest. I assured Ashley that we would work every day on her Personal Progress. Her medallion was not given to her just because she was sick. It was because of the person she is, and the couragous life she has lived. It is because of her valiant and strong testimony of the gospel and her faith in Jesus Christ. It is because the Young Women General presidency believe in her and love her. They know she will continue working on her goals as long as her health permits. It was such a privilege and a blessing for her. She wears the medallion every day. I know she deserves it, and I want her to know, it wasn't because of charity they gave it to her. (0:

Last night, we had some special visitors come over. Ashley was able to spend the evening with a very special friend who moved away and hasn't been able to play with Ashley for a long time. It was such a blessing for these wonderful sisters to be in our home. They are two very special and compassionate ladies, and the time spent visiting with them, while our daughters played was such a privilege for me. I was refreshed, rejuvinated, happy, and ready for the week when they left. I want them to know how much I appreciate the time they took to come lift our burdens.

I also wanted to mention that I was able to spend some time with a dear sister from my ward after church yesterday. This dear lady recently lost her darling baby girl, who was not quite three months old. I am so grateful for her and for how strong this sister is. I look up to her in every way. Her testimony radiates through her every action. She has wonderful children, is a super awesome mom, and I appreciated the time she took to come and listen to me. I pray for her and her family every day, that they might continue to be blessed in their time of loss.

Today was another fairly good day for Ashley. She was tired this morning, but was able to come with me visiting teaching. She loves to come with me when I visit my sisters.

When we arrived back home, she had to rest for a while. She still didn't eat well today, although she ate better today than she did most of last week. Her appetite is still non-existant for the most part. The nurse came today and seemed pleased with how Ashley was doing. Her breathing has been good today. We seem to have a good balance right now with her Lasix, and the fluid retention is under control. Tonight her legs hurt again. The nurse said the body aches won't go away. They are going to continue: a direct problem from the protein loss. Since she isn't taking in protein, her protein levels are likely very low again. I am working on buying a protein powder that dissolves in liquids and is supposedly tasteless. I hope by adding that to her diet, she might have a little more protein intake. She certainly isn't getting it from eating protein rich foods.

Other than that, she hasn't had any chest pains today. No fainting spells. No strange vision problems. Her stomach hasn't gurgled much. Thus, not so many trips to the bathroom. Her spirits have been up tonight as well. I am always grateful for the times when she feels good enough to smile. What a blessing! The boys had a good night. I fail to mention my stripling warriors, (and yes, they act like indian warriors much of the time! Ha ha ha!) But they are troopers. They have handled all the changes in Ashley's health so well. I am super proud of them.

I just wanted to thank everyone again for pouring into our lives. I can't tell you how all of the notes and letters and prayers help us every day. May you all have peace in your hearts!! (0:

Saturday November 14, 2009

Greetings friends and family! Wow, another two days just flew by again. I can't believe how quickly time goes by. Yesterday was literally a whirlwind for me. We had lots of visitors in and out all day long. In the afternoon, Preston had a singing program at school and Ashley and I decided to brave it and go watch him sing. She did very well throughout the program. With all her near fainting spells and strange changes in her vision, I was nervous to take her in such a large crowd of people. She took her ipod and did alright. After the program, we were able to walk around the school and visit with the boys' teachers, as well as some good friends. I know Ashley enjoyed that brief outing. I will say it took it's toll on her. After so many visitors, taking Daddy lunch, going to the school and visiting, she came home, crawled up the stairs again, and fell asleep on the couch. I went up after her, to make sure she was alright. It was good to see her resting comfortably. She slept for over an hour.

Her rest was short-lived. We had yet another amazing experience last night, involving some special visitors. Jason, as you all know, loves to talk to people. He makes friends easily, and those he is friends with, all adore him. One person he has a particularly close friendship with is the owner of the Mac Store in Boise. (No shocker there! Ha ha ha!) Ken and his wife Amber, lost a son a few years ago. They are always asking how things are with our little angel. When they heard she had a difficult week, they wanted to do something special for her, and for our family. They came over last night and brought us a lovely dinner. They also came bearing gifts for all our children, as well as a couple of family gifts. I was speechless! I never expected so much! It was so special for us! They stayed for a while, and talked with us. It was so nice to talk to someone who has been down the path I am on now. Amber shared many things with me about her son's life, and his death. When they left, we again felt so loved!! How wonderful that they would take time out of their busy lives to come lift our burdens! And the coolest part of the night: we got to see Ashley smile, LOTS! (0: She has been so depressed this week. She will have moments where she is happy, but not many. Just the fact that she could smile for a little time lightened the heaviness in my heart.

Today was an okay day. She was super tired when she woke up this morning. We again had visitors. Jason's mom and half-brother and kids came to visit this afternoon. We did make a brief outing to the grocery store after they left. Ashley had no appetite all morning long. She hasn't been eating well at all, and it worries me to no end! I desperately tried to figure out something for her to eat. She finally agreed to try eating some chicken nuggets from McDonald's. Thankfully, she was able to eat all six of them! What a miracle that was! She came home from that outing and once again laid down and rested for a long time. I did cook a turkey for dinner tonight. She loves turkey and she told me if I cooked that for her, she would eat lots! (0: She didn't eat lots, but she did eat enough I was content.

My main concern tonight is that her food is going right through her again. Without the IV nutrition, the protein loss is a big problem. Her protein levels are falling, and with how poorly she is eating, I am not sure how to combat that. She will literally eat and run to the bathroom afterwards. It is horrible for her! There is no medication that will stop that problem. I don't know what to do.

We have found joy in our night time reading. Ashley has a love of the Friend, the Ensign, the New Era, and the scriptures. Nights are always hard for her, and when she can't fall asleep and fights the nervousness, she loves to sit and read with me. Those beautiful, inspiring stories calm her right down. She is able to relax and sleep. Through my reading time with her, we have also started reading those wonderful stories with the boys. They also love to hear how others valiantly live the gospel. I really feel this challenge is spiritually awakening all of us. Just in the past week, we have had numerous spiritual experiences. I have felt the spirit so strongly! I know the children have too. It lifts our hearts. It binds us together and makes us strong. In those moments when the spirit fills my heart and soul, I feel like I can conquer anything! I feel such love for my Heavenly Father, my family, my parents, my siblings, my extended family, the wonderful leaders of our church!! I am so grateful for this challenge and the growth it is bringing to all of us.

Blessings Raining from Heaven Nov. 13, 2009

Sorry for the lack of blog last night. Ashley did not have a good night. She was struggling to breathe again and was very upset, so I stayed by her side. I didn't know what to do to help her. Medications are only bandaids and last night, those bandaids didn't work well at all. What Ashley wanted was to read scriptures with me. So that is what we did. We read scriptures together for a little while, and then we read stories out of the New Era. By the time we turned off the lights, Ashley was at peace again. She was still feeling pretty yucky, but the spirit was with her. She was able to relax enough to fall asleep. I know the scriptures really blessed her last night. There is no doubt of that.

Today was another bad day. She woke up this morning feeling super tired and achy all over. She was feeling anxious again, so she asked for some Ativan. After I gave her that medication, she started feeling really strange. Her description of how she felt was the same as when she wakes up from a procedure or surgery. She was groggy and dizzy and just felt, in her words, "loopy". That scared me! I was fearful all morning long. I made her wear her oxygen for a little while, but it didn't help much. On top of her strange symptoms, she was so sad today. Nothing seemed to pull her out of her depression. Yesterday we had gone to Michael's to buy some more crafting supplies. Part of that included a gingerbread village. I encouraged her to perhaps work on some of those projects today, hoping it might brighten her a little. But it didn't. She was so sad this afternoon, she literally crawled upstairs and laid on the floor and sobbed. I was beside myself!! She didn't want to talk. She didn't want me to sit with her. She just wanted to be alone. She did finally make it back down the stairs and came into the bedroom again. We put on a movie and she let me sit by her. We didn't talk for almost an hour. She finally did tell me she was having pains in her stomach and chest. The pain was so severe, she didn't want to move. It was so scary again! I said a silent prayer in my heart and did all I could to make her more comfortable.

Tonight we had another amazing experience! The blessings keep pouring down on our family. I can't tell you how many wonderful experiences we have had over the past little while. And they keep coming! Tonight, Bro. Bledsoe, (who is a counselor in our bishopbrick), and our newly sustained stake president, President Asay, and the Young Women's President, Sis. Morse, came over to our home. The stake president told us that after Elder Rasband came to our home last Sunday, he went back to Salt Lake and called the General Young Women's President, Sis. Dalton. He told her about Ashley and the spirit he felt around my little angel. Sis. Dalton and her counselors wrote a personal letter to Ashley, telling her how much they loved and believed in her, how proud of her they were. They also told her in this letter, that because of the exemplary life she has lead thus far, they wanted her to have her Young Womanhood Recognition Award right away. Bro. Bledsoe and Sis. Morse then presented Ashley with her medallion. They also gave her the letter, personally written by the Young Women's General Presidency. I can't tell you what an awesome experience that was!! I was so touched they would take such an interest in my little girl. I was so touched once again, Ashley was given an lift from heaven. After they left our home, and I stopped crying, (ha ha ha), Ashley did something she hasn't done all day long: SHE SMILED!! (0:

I know Heavenly Father is watching over us. I know He loves us. I know He loves her. Miracles do happen daily. Don't ever doubt that. We had another miracle today.

Thanks again for all your love and faith and prayers!! They are working!!

Tonight

Tuesday November 9, 2009

Today wasn't a good day for my angel. She woke up feeling extremely tired. I can always tell when she isn't feeling as good because her mood is so dark. Today was one of those dark days for her. She didn't smile much. She didn't talk much. She didn't eat much. We did take a brief outing to the store this afternoon, and even a car ride wasn't helpful today. Tonight she was struggling to breathe and was so tired, while we were reading scriptures together, she fell asleep sitting upright in the recliner. Days like today are always worrisome. I do hope tomorrow will be at least a little better for her.

On the bright side of things, her leg wasn't hurting as badly. We did find another gingerbread train that we plan to build tomorrow. Ashley is really looking forward to that. She also was able to get a personal progress book this afternoon. She didn't feel like working on any goals, but we are hoping to start working on it tomorrow. I do feel it will brighten her spirits a little bit. I hope it will.

Monday November 9, 2009

Greetings friends and family! (0: Today was another good day. Ashley was very tired this morning. She and I had another Criminal Minds marathon while she rested. YEE HAW! (0: She laid around most of the morning. I figured she would be extra tired after the weekend. But it was a very wonderful weekend, and I wouldn't have changed anything we did. She was very happy.

The nurse said Ashley was looking well. (Our hospice nurse comes on Monday, Wednesday, and Friday). She was pleased with her breathing and her overall appearance. Ashley is having trouble with pain in her right leg. The pain has been pretty severe at times. The nurse said it is most likely because she still is losing protein. Without the IV nutrition, her protein levels will fall and her muscles will start complaining. Her appetite is still not good, so eating won't help boost her protein. We can try protein supplements, which is what the nurse recommended. We can also control her pain with Hydrocodone.

The other problem she struggled with today was feeling light-headed. For those of you who know how low her oxygen levels get, she saturates in the low 70's now. Her oxygen should be worn at all times to keep her levels in the high 70's so she feels better. However, she absolutely hates her oxygen. She fights me on that everyday. Today she didn't wear it very much, and I know, given her dusky appearance, she was not saturating well. At this point, I don't fight her on wearing her oxygen. She will put it on when she starts feeling really sick. The nurse said it isn't worth the fight. But I think it is, at times. I want her to feel as good as she can.

The bishop called tonight to check in on Ashley and to find out how our visit went with Elder Rasburn and Elder Rowe yesterday. He said they were surprised Ashley wasn't bedridden. I really hope I haven't given anyone the impression that she is bedridden. She will stay in bed quite a bit of the time, but she also has times when she is up and around and talking to everyone. I am so thankful she can still get around. If she was too sick to get out of bed, she would be so depressed! She enjoys the times she can go out for car rides and sit in the living room with the family. It is a blessing she can do that.

The bishop also asked me about Ashley's personal progress. We haven't yet started working on any of her Young Women's goals, but I do feel it would be a good idea to do so. We don't yet have a personal progress book, so I need to ask the Young Women's leaders if we can get one. It would give Ashley something fun and inspiring to do. Why not fill her time with useful, uplifting things? She gets so down. I know that would bless her life.

Thanks again to all of you for your faith and prayers. They are working!! She is still with us, and I couldn't be more grateful she is, and that she is not any sicker than she was before that PICC was removed! Wishing all a wonderful night and a beautiful day tomorrow! (0:

Sunday November 8, 2009

For all of my wonderful family out there: here is my newly designed blog! Thanks to my lovely sister, Tammy, and her expertise in the blogging department, I have decided this is the best way to keep everyone updated. Facebook will work, but blogging is much better. I can express things in a better way, without limitations on how many words I can use.

So the past couple of days have been delightful. Mom and Dad came up to Nampa yesterday to spend some time with us. I was so thrilled to have them come. The past week was rough. Ashley developed several new symptoms, and we have all gone through another stage of mourning as she has lost some ground. She was depressed yesterday morning, but when her grandparents arrived, she perked right up. She was able to get out of bed and come out in the living room and visit and laugh. When we blew up the air mattress last night, she came out in the living room and rolled and flipped on it. Mom remarked how fun it was to see her play and have fun like a normal child. (0:

Today was just the icing on our cake. Mom and dad brought a darling gingerbread house with them when they came. It was a project that Aunt Donna and Uncle Carl completed with their grandkids recently. Ashley loved the little house so much, she wanted to make one. Mom and dad, bless their hearts, went out and found a kit last night, so this morning, while we went to stake conference, they stayed with Ashley and helped her build a gingerbread house. It turned out so cute! Ashley throughly enjoyed making it! It brought a little sunshine into her day. I was so happy to get to go to church with Jason and the boys. Our meeting was uplifting and refilled our spiritual cups. I was so thankful Mom and Dad made it possible for us to go. (0:

We were blessed to have a very special experience this afternoon. Yesterday, I received a phone call from the stake president's office. The two visiting general authorities wanted to come and visit with our family. I was floored! Due to their hectic schedules in the afternoon, they were unable to come. But after stake conference today, they took the time, out of their busy lives, to come to see us. One of them was Elder Rasband, who is in the Presidency of the Seventy. The other was President Rowe, who is our Area Authority. After they arrived at our home, and had met all our children and visited with us for a little bit, Elder Rasband looked at me and asked me, "Sister Winn, the Lord sent us to you. Out of all the people in the stake, we were impressed to come here. Why do you think the Lord sent us?"

I can't tell you how much we all needed to have that assurance, that Heavenly Father knows our family. He knows our pain. He loves us. He is there, watching over us. This past week, I felt so much fear. I was so scared that I wouldn't be able to hold up. The other day, I was consumed with grief!! I could feel Ashley struggling emotionally and physically! She was so depressed! I was so depressed! On top of that, I began to question my worth as a person in this world. I have always struggled with self worth, but I began to question my value. I know my sweet Jason was struggling with the exact same thing. He too had such a discouraging week. Work was hard. He and I don't get much time alone anymore. That doesn't help when we need one another and don't get that time to cuddle and talk and build one another up. When Elder Rasband and Elder Rowe came today, the spirit filled our home. They brought the love of our beloved prophet. Elder Rasband had spoken to President Monson personally just before departing for Nampa. President Monson took him by the hand and told him to let the saints here know just how much he loved them! Today, he held Ashley's hand, and in a very powerful and reverant way, told her he personally brought the prophet's love to her. He told her that Heavenly Father was with her every moment of every day. He told her how strong and valiant she was. She was so touched! We were all touched! The spirit radiated from these great men! In that moment, I knew we would be alright. I felt the strength from heaven fill our home. I know my children felt it too. What an amazing experience for all of us!

These great men, before they left, prayed with us. Elder Rasband offered the prayer. Oh what an opportunity to hear such a man pray, and pray for my little family!! The spirit filled our hearts once again. They hugged us and expressed their love and belief in us. Even after they departed, the spirit stayed. We have all been spiritually refreshed. Words can't express how grateful I am that Heavenly Father sent those two men into our home. We needed them. We needed their strength and love. We needed to know Heavenly Father was there, that he knew we were all struggling. We needed those angels to build us up and prepare us for another week in this world. Oh how I wish we could have stayed in that moment forever!! Or bottle up that amazing feeling and save it for later.

Thanks again to all for your faith and prayers. Ashley is still with us, and I can't be more grateful for everyone who is praying for her comfort and peace. You prayed those wonderful leaders to our home. With them, came the strength and peace and hope we all needed. It was a miracle!! (0: