Not quite sure where to begin. It has been a while since I have posted and a lot has happened. And I can't process it all right now. I am hoping that this post will help. William, this blog has been a really anchor for me. It has really helped me to deal with everything and let go of things and understand things and communicate things. I plan on this being my last post. It is a little surreal for me. The end. The completion of something so terrible, so wonderful, so life altering. And the beginning of the rest of our lives. Our "happily ever after." I thought of the title to this last post a month or so ago. It made me smile at the time. But know I feel a little differently about it. These last few weeks have been eye-opening for me. Let me explain. . .
Since we have been home from your last surgery everything has been absolutely wonderful. Even the hard stuff seems bearable. Just regular family craziness. But I have been able to step back and see it for what it is, temporary. I have been able to recognize the tiny, insignificant stuff for what it truly is. Which, for a mother that stays at home all day, can be very liberating. You have been eating well, playing well, sleeping well, healing well. You took your first bath in 3 months. I promise, I have been sponge bathing you all this time. But now you can sit in the shallow water (it needs to be shallow so that your wound doesn't soak in all that bacteria filled water) and play and splash. You returned to your old room with Lance (you have been sleeping in the port-a-crib in Mommy and Daddy's room). And you are making up for lost time by filling your diaper at least two times a day, sometimes up to four times a day :) And best of all, your little, funny, sweet personality is back. You laugh, hug, kiss, spit, scream, tease, and play all day long. You are back. We went for your follow-up visit yesterday. You haven't gained any weight so they want to see you again in a month, but they aren't worried. You look good and act like you are good. All checked out. We don't even have to do any more dressing changes for your ostomy wound. Nothing is left. I haven't done one single thing today that has to do with your illness. And I don't plan on doing another thing ever again.
I remember way back in December thinking of this day. Oh how I prayed it would come. And it did. And I thank my Heavenly Father every day and multiple times a day that it is here. It is a miracle. So, it came as quite a shock to me last week when I realized that I didn't feel happy. I felt "blah." I remember one of the social workers I spoke with at the hospital telling me that feeling "blah" can sometimes mean we are depressed. How can that be? Why do I feel that way now? You are better. Life is better. Everything is supposed to be the way I dreamed it would be. But it's not. I have talked with Daddy and some others about all this and thought about it a lot myself. I realize that while you were sick I held a lot in. I had to be strong for you and for Lance and Olivia. And I had to be strong for me. I couldn't lose it. If I lost it then I would be facing the reality of what was really happening. I think I understood what was happening, it just felt like I was standing on a cliff watching my son almost die and then ever so slowly fight to live. I couldn't jump off the cliff. What good would that do? So, I watched. I kept my distance and dealt with what I facing the best way I knew how. And now that you are better I find myself jumping off that cliff, wanting a closer look. I find myself thinking, "Did that really happen to us?" Before I started this post I read my very first post and watched the slideshow. I lost it. Grief doesn't just go away once the reason for it goes away. I thought it would. But I realize that there are so many different layers to our grief and you have to deal with each one. I was talking with a friend who has dealt with a similar experience in her life and she said that sometimes you need to let yourself "leak" a little. Sometimes you just need to grieve, cry, and be sad for what has happened. I wanted to get on with our life. To start our "happily ever after." But I realize now that our "happily ever after" isn't always going to be easy. I have to be patient. Patient with you, with Lance, with Olivia, with Daddy, and with myself. Our little tragic story is real. Most people have a little tragic story and we are all just plugging away trying to deal with it the best way we know how. I love our little tragic story, because we were all together in it, and we all made it out together. And we all get to heal and grow and learn together. So that is what we will do. Just keep plugging away. Doing those things that will help us and being patient when the help doesn't seem to work fast enough. So, look back and see how many people love you and care for you and made sacrifices for you and know that this world is good and there is always HOPE.
I guess this is goodbye. It's really hard for me to say goodbye. It's hard for me to comprehend that this part of our journey is over. I don't understand why it is hard to let go. But, writing to you has meant so much to me. It kept me connected to my little boy for those weeks when I had no other way of communicating with you. It helped me reach out to you and to everyone that loves you and was so very concerned for you. In a small way, it saved me. And I am sure it will save me over and over again as I read and re-read. So much has happened. So much good has come for your "pause" in life. I love you. I am so very proud of you. I hope that more than anything you can feel that. I hope that my words will forever be in your heart and mind. William, always remember that your Mommy loves you.
Thursday, March 31, 2011
Thursday, March 10, 2011
William Unplugged
We're done, William. We get to go home. . .forever. No more hospital stays. No more tubes. All done. I can't believe it. I am thrilled, relieved, so very grateful. And you are doing awesome. The surgeon stopped by today and said, "He looks great. Do you want to go home tomorrow or tonight?" Daddy and I were speechless. You still hadn't even pooped. Daddy asked the surgeon if he was concerned that you hadn't pooped yet. Dr. Harrison said that he wasn't. He said it will happen, it may just take more time. He knows you. He knows that you take longer to do everything ;) And sure enough about an hour and a half later you pooped and it was big. Daddy was here alone with you and this is what he had to say about it in an email he sent: "It finally happened...and in an atomic fashion. I won't say more as I don't want to have to relive it again." Needless to say, it was big. Even though Daddy doesn't want to relive it we are both thrilled it happened.
Yesterday they took out your epidural and your catheter. Later in the day your IV went bad again. They sent for three different specialists to give you a new one and after six pokes they couldn't find a good vein. So, you went without IV fluids all night and did great. You are hooked up to NOTHING. (They took out your nose tube a few days ago.) You don't have any tubes. We ran into one of your docs from the PICU tonight and he said "Oh, William Unplugged." It is absolutely amazing to walk over to your bed and simply pick you up and carry you anywhere. We can go for walks, to the playroom, up and down the elevators. Your spirits are lifted. The sparkle in your eye is back. You smile more. Happy Day.
So what now? Good question. Maybe more restful nights, more play dates and excursions out of the house, more hugs and kisses, more back to normal. Even though I do believe our "normal" is not what it used to be and I don't think it ever will be again. In a good way. As I have said before, we are all changed from this. We look at you and at each other in a different light. We appreciate what we have and try (and don't always succeed) to see the silver lining. We know it could be worse. We have seen the worst. But we have made it to the other side with a little more perspective and appreciation for our family, friends, and faith in God. Little man, I love you. I love you so deeply I can't and won't ever be able to put it into words. You have helped me in ways I can't explain. I want you to know that without family, friends, and our Heavenly Father we can't do it. We won't make it. Rely on those things. Please, always have faith and know that you are personally known and watched over by a loving Heavenly Father. You may not always see it or feel it. But He is there. Be patient and have faith. It will all work out. You're proof of that already.
I love you. I'll see you at home!!
Yesterday they took out your epidural and your catheter. Later in the day your IV went bad again. They sent for three different specialists to give you a new one and after six pokes they couldn't find a good vein. So, you went without IV fluids all night and did great. You are hooked up to NOTHING. (They took out your nose tube a few days ago.) You don't have any tubes. We ran into one of your docs from the PICU tonight and he said "Oh, William Unplugged." It is absolutely amazing to walk over to your bed and simply pick you up and carry you anywhere. We can go for walks, to the playroom, up and down the elevators. Your spirits are lifted. The sparkle in your eye is back. You smile more. Happy Day.
So what now? Good question. Maybe more restful nights, more play dates and excursions out of the house, more hugs and kisses, more back to normal. Even though I do believe our "normal" is not what it used to be and I don't think it ever will be again. In a good way. As I have said before, we are all changed from this. We look at you and at each other in a different light. We appreciate what we have and try (and don't always succeed) to see the silver lining. We know it could be worse. We have seen the worst. But we have made it to the other side with a little more perspective and appreciation for our family, friends, and faith in God. Little man, I love you. I love you so deeply I can't and won't ever be able to put it into words. You have helped me in ways I can't explain. I want you to know that without family, friends, and our Heavenly Father we can't do it. We won't make it. Rely on those things. Please, always have faith and know that you are personally known and watched over by a loving Heavenly Father. You may not always see it or feel it. But He is there. Be patient and have faith. It will all work out. You're proof of that already.
I love you. I'll see you at home!!
Monday, March 7, 2011
Slowly Passing
Time, gas, poo. All things that are slowly passing in our lives lately. Sorry, I know that is gross, but it's true. . .and I am a little over tired right now, so everything is a little more funny, instead of gross. But, seriously, we are just waiting for something to pass through your little intestines. This morning at about 3:30am you did pass gas, but we are still waiting for something more solid. Once that happens everything else should move along quickly. They will take out your nose (NG) tube, epidural, and catheter. And maybe you can eat a little something. We tried to get you up and moving this morning, but you just acted weak and frustrated. You are hooked up to so many things and haven't had any solid nourishment for 4 and a half days, so I don't blame you. Lots of sleep and movie watching. Your favorite movie in the hospital has been CARS.
Last night was a little rough. You fell asleep for the night around 8pm. At 10pm your nurse discovered that your IV had gone bad and had to be replaced. Waking you up in order to pull out an IV in one arm that was swollen and then poking you in order to put a new IV in your other arm was pretty awful. Your nurse also noticed that your NG tube had blood in it, which isn't normal. So they did an x-ray to see where it was positioned and discovered it needed to be advanced 6 cm. The base of the tube was in your esophagus instead of your stomach and had suctioned up against a wall and was irritating that area, thus the blood. So off came the tape that was holding the tube up against your face and down went the tube, gagging you a little. An hour and a half later we were ready for you get back to sleep. Needless to say, you slept late this morning :).
All in all you are happy though. You are weak and don't want to do much, but you seem content to watch movies, sleep, and send your Hot Wheels cars down your track.
This past week Daddy got Chinese food and the two fortunes we got in our cookies seemed very appropriate. First: "The wise thing to do is to prepare for the unexpected." And second: "You would do well to work as a team in the coming week." I think we can do that. This whole experience has taught us that life is never predictable and that the only way to survive the unexpected is to rely on those we love.
So we wait. And send good vibes to your bowels (pun intended). Move, move, move.
We love you, darling. We are here, waiting and praying for progress and pain-free healing. Keep fighting, little man! xoxoxo
Last night was a little rough. You fell asleep for the night around 8pm. At 10pm your nurse discovered that your IV had gone bad and had to be replaced. Waking you up in order to pull out an IV in one arm that was swollen and then poking you in order to put a new IV in your other arm was pretty awful. Your nurse also noticed that your NG tube had blood in it, which isn't normal. So they did an x-ray to see where it was positioned and discovered it needed to be advanced 6 cm. The base of the tube was in your esophagus instead of your stomach and had suctioned up against a wall and was irritating that area, thus the blood. So off came the tape that was holding the tube up against your face and down went the tube, gagging you a little. An hour and a half later we were ready for you get back to sleep. Needless to say, you slept late this morning :).
All in all you are happy though. You are weak and don't want to do much, but you seem content to watch movies, sleep, and send your Hot Wheels cars down your track.
This past week Daddy got Chinese food and the two fortunes we got in our cookies seemed very appropriate. First: "The wise thing to do is to prepare for the unexpected." And second: "You would do well to work as a team in the coming week." I think we can do that. This whole experience has taught us that life is never predictable and that the only way to survive the unexpected is to rely on those we love.
So we wait. And send good vibes to your bowels (pun intended). Move, move, move.
We love you, darling. We are here, waiting and praying for progress and pain-free healing. Keep fighting, little man! xoxoxo
Friday, March 4, 2011
Together Again
Together Again. It sounds like the title of a love song. I "googled" it. It actually is the title to one of Janet Jackson's songs. A song I used to listen and dance to. Funny. You would probably like the song. It has the kind of beat you like. Little side note: You really like to dance. We were walking through a parking lot several months ago and a car drove by us with a super loud base, windows rolled down, blaring music. And what did both you and Lance do? Starting moving to the beat. Super cute.
Back to the subject. Your intestines are together again. You had surgery yesterday. All went well and you are recovering well. We checked into the hospital on Wednesday afternoon. They started your IV and started you on a "flush." Your digestive tract needed to be completely flushed for the surgery. So they sent over 1000 mL of fluid through you. I changed your ostomy bag twice, once at 3am on Thursday morning and again at 7am. But 7am was the last ostomy bag I will ever do. Whoohooooooooooo!!!! You couldn't eat or drink anything on Thursday. You did amazingly well with that. We had to hide our food from you otherwise you did ask for it and get a little upset when we said "no." You mostly rested and slept on Thursday. About a half hour before we were called down to surgery you and I took a nice little nap together. It felt great. You went into surgery around 3:50pm. When they were getting you ready to be wheeled in you kind of freaked out a bit. So they gave you some Versed. That's pretty cool stuff. It's an anti-anxiety medication that even causes a little bit of amnesia. Within 5 seconds of that going into your IV you were all smiles and relaxation. You were even randomly laughing. At one point the anesthesiologist asked "Are you a little stoned?" and you answered "Yah." That was entertaining. In surgery they put your small intestine back together. They had to go through your mid-line scar again, but they were able to stitch that back up from the inside and make your scar even smaller than before. And they left the area where your stoma was open. There is so much bacteria that they need to just let it heal from the inside out. It has a lot of dressing in it. You also had an appendectomy. This was just to avoid having to mess around with your abdomen later on in life. You came out at about 6:50. All went well. You got an epidural and other pain meds and seemed pretty comfortable and relaxed.
I went home last night, and Daddy stayed at the hospital. He said it was a bit of a rough night. You seemed to be in pain. Not severe, but uncomfortable. They replaced your epidural machine and you seem to be resting well this morning.
So, we are just waiting for you to pass some gas or mucus or something and then they will start you on food and then we wait to see if that all goes through you well. As soon as it does we go home. You may still be kept on the feeding tube when we go home, but we will definitely cut back on the amount of formula you are given through the tube and work towards weaning you off soon.
All is well. I am so grateful. I kept telling myself that "time would pass." And it did. I am glad that life can be filled with a lot of good things even amongst the bad. We are so blessed. You are such a trooper. I love you!
Back to the subject. Your intestines are together again. You had surgery yesterday. All went well and you are recovering well. We checked into the hospital on Wednesday afternoon. They started your IV and started you on a "flush." Your digestive tract needed to be completely flushed for the surgery. So they sent over 1000 mL of fluid through you. I changed your ostomy bag twice, once at 3am on Thursday morning and again at 7am. But 7am was the last ostomy bag I will ever do. Whoohooooooooooo!!!! You couldn't eat or drink anything on Thursday. You did amazingly well with that. We had to hide our food from you otherwise you did ask for it and get a little upset when we said "no." You mostly rested and slept on Thursday. About a half hour before we were called down to surgery you and I took a nice little nap together. It felt great. You went into surgery around 3:50pm. When they were getting you ready to be wheeled in you kind of freaked out a bit. So they gave you some Versed. That's pretty cool stuff. It's an anti-anxiety medication that even causes a little bit of amnesia. Within 5 seconds of that going into your IV you were all smiles and relaxation. You were even randomly laughing. At one point the anesthesiologist asked "Are you a little stoned?" and you answered "Yah." That was entertaining. In surgery they put your small intestine back together. They had to go through your mid-line scar again, but they were able to stitch that back up from the inside and make your scar even smaller than before. And they left the area where your stoma was open. There is so much bacteria that they need to just let it heal from the inside out. It has a lot of dressing in it. You also had an appendectomy. This was just to avoid having to mess around with your abdomen later on in life. You came out at about 6:50. All went well. You got an epidural and other pain meds and seemed pretty comfortable and relaxed.
I went home last night, and Daddy stayed at the hospital. He said it was a bit of a rough night. You seemed to be in pain. Not severe, but uncomfortable. They replaced your epidural machine and you seem to be resting well this morning.
So, we are just waiting for you to pass some gas or mucus or something and then they will start you on food and then we wait to see if that all goes through you well. As soon as it does we go home. You may still be kept on the feeding tube when we go home, but we will definitely cut back on the amount of formula you are given through the tube and work towards weaning you off soon.
All is well. I am so grateful. I kept telling myself that "time would pass." And it did. I am glad that life can be filled with a lot of good things even amongst the bad. We are so blessed. You are such a trooper. I love you!
Tuesday, March 1, 2011
The Beginning of the End
Hey, Little Man. So, yes, this is the beginning of the end. We check back into the hospital tomorrow. Your surgery is scheduled for Thursday. They will take all of tomorrow prepping your little body. They need to "flush" your system. Get it all cleaned out and ready.
I am not really excited about any of this, except the end product. Which is a put back together William. The best product.
You are definitely ready and strong enough for the surgery. In the past five days or so Daddy and I have changed your ostomy bag about 10 times. I changed it three times yesterday! Luckily Daddy came home for the third, otherwise I might have cried through the whole thing :) The reason it has been leaking so much is because of your increased activity. You're a little machine. Up, down, over, under, rolling, climbing. Every time you move the bag moves with you. So, it quickly wiggles right off of you. Or, I don't know, maybe you are secretly picking at it so it will come off sooner so we will change it and you can watch "Fox and the Hound." Every time we change your bag we start up that movie. You LOVE that movie. I think we have watched it about a hundred times in the past few months. We are all quoting it. Hopefully, all you will remember, if anything, about your ostomy bags is good ol' Copper and Todd. But, all this hard stuff helps me to feel more ready to watch you go through another surgery and another hospital stay. And then after the hard part you may very well be done with hospitals for the rest of your life. That sounds nice.
I hope you're ready for this. Be strong and know I am loving you and willing and wanting to do whatever I can to make it easier. We're almost there, William. Let's do it. See you at the hospital. Sweet Dreams. Your mommy loves you like crazy!
I am not really excited about any of this, except the end product. Which is a put back together William. The best product.
You are definitely ready and strong enough for the surgery. In the past five days or so Daddy and I have changed your ostomy bag about 10 times. I changed it three times yesterday! Luckily Daddy came home for the third, otherwise I might have cried through the whole thing :) The reason it has been leaking so much is because of your increased activity. You're a little machine. Up, down, over, under, rolling, climbing. Every time you move the bag moves with you. So, it quickly wiggles right off of you. Or, I don't know, maybe you are secretly picking at it so it will come off sooner so we will change it and you can watch "Fox and the Hound." Every time we change your bag we start up that movie. You LOVE that movie. I think we have watched it about a hundred times in the past few months. We are all quoting it. Hopefully, all you will remember, if anything, about your ostomy bags is good ol' Copper and Todd. But, all this hard stuff helps me to feel more ready to watch you go through another surgery and another hospital stay. And then after the hard part you may very well be done with hospitals for the rest of your life. That sounds nice.
I hope you're ready for this. Be strong and know I am loving you and willing and wanting to do whatever I can to make it easier. We're almost there, William. Let's do it. See you at the hospital. Sweet Dreams. Your mommy loves you like crazy!
Sunday, February 20, 2011
Miracle
Hello, my sweet William. I miss writing to you. I don't miss the solitude of a hospital room, but I do miss the quiet time to write and reflect on life and miraculous you. But, I am so deeply grateful that I have the chaos of our home and life. I find a deep sense of joy by just simply watching you walk (and try to run) throughout the house. The littlest thing makes my heart swell with gratitude. The other night all five of us were sitting on Olivia's bed reading books, getting ready for bed. I took a mental picture. It's so good to be together. It's so good to be healthy. It's so good to be happy. We are happy. I know that Daddy and I have never experienced the fatigue that we feel. And I think we all feel the stress of your illness. But we are together and so very happy to be.
So, updates. . .We went to the hospital on Friday for a few pre-op things. The did a barium enema. That means they put special fluid up your rectum and then took an x-ray of your large intestine. They did this in order to make sure your intestine is all clear, that there aren't any further blockages. All was clear. They also did a biopsy for Hirshsprungs disease. We will get those results on Tuesday. You did pretty well through it all. They had to give you some Versed to calm you down. They had to poke you about five times until they found a good vein for an IV. Then they put you in a "Deep sedation" so you would hold still for the enema and x-ray. You weren't happy to be there, but we survived.
As we drove home together I realized that we have less than two weeks until your surgery. I am very anxious for you to be put back together, but I actually got a little emotional thinking about the whole thing. I don't want our family to be split up again. Even though it will be better than our last visit to the hospital it is still the hospital and there are still risks. Thank goodness for prayer. It is bringing me a lot of peace. And I know we are on the flip side of all this. I know that it could be worse. I know that we are so very blessed. I am so very grateful for all of that.
I have been telling everyone that our William is back. You are who you used to be before all this, except you have a nose tube and an ostomy bag. . .but not for long. It is wonderful. It is a miracle. It is an answer to our prayers. I taught a Sunday School lesson today at church about the miracles Jesus performed while on the earth. In the lesson it talked about all his miracles, but then also said that there are miracles today too. You are one of those miracles, little man. You have shown us all that God is real and that he loves us and will comfort us and watch over us. He may not always take away painful experiences, but he will always bring peace to us and help us grow and learn from our trials. I feel blessed. I feel loved. Know that you are such a blessing to me and you are loved by so many. I probably won't write again until we are back in the hospital. . .so, until then, play hard, stay healthy, and enjoy your brother and sister ;)
xoxoxoxooxoxoxoxoxoxo
So, updates. . .We went to the hospital on Friday for a few pre-op things. The did a barium enema. That means they put special fluid up your rectum and then took an x-ray of your large intestine. They did this in order to make sure your intestine is all clear, that there aren't any further blockages. All was clear. They also did a biopsy for Hirshsprungs disease. We will get those results on Tuesday. You did pretty well through it all. They had to give you some Versed to calm you down. They had to poke you about five times until they found a good vein for an IV. Then they put you in a "Deep sedation" so you would hold still for the enema and x-ray. You weren't happy to be there, but we survived.
As we drove home together I realized that we have less than two weeks until your surgery. I am very anxious for you to be put back together, but I actually got a little emotional thinking about the whole thing. I don't want our family to be split up again. Even though it will be better than our last visit to the hospital it is still the hospital and there are still risks. Thank goodness for prayer. It is bringing me a lot of peace. And I know we are on the flip side of all this. I know that it could be worse. I know that we are so very blessed. I am so very grateful for all of that.
I have been telling everyone that our William is back. You are who you used to be before all this, except you have a nose tube and an ostomy bag. . .but not for long. It is wonderful. It is a miracle. It is an answer to our prayers. I taught a Sunday School lesson today at church about the miracles Jesus performed while on the earth. In the lesson it talked about all his miracles, but then also said that there are miracles today too. You are one of those miracles, little man. You have shown us all that God is real and that he loves us and will comfort us and watch over us. He may not always take away painful experiences, but he will always bring peace to us and help us grow and learn from our trials. I feel blessed. I feel loved. Know that you are such a blessing to me and you are loved by so many. I probably won't write again until we are back in the hospital. . .so, until then, play hard, stay healthy, and enjoy your brother and sister ;)
xoxoxoxooxoxoxoxoxoxo
Tuesday, February 8, 2011
Little Booger
Lots of good news.
Your surgery to reverse your ileostomy is scheduled for the March 3rd. Whoohooo!!! We are excited to see the end of the ostomy bags somewhere in sight. The night before last I actually slept over five straight hours, only to wake up with you saying "Mama" and finding your bag had exploded. Yuck.
You are still gaining weight. You gained another two pounds, which when you are only about 20 pounds is quite a bit of weight. You are now in the 26th percentile. Yeah! The doctors were very pleased with your progress on all levels. You are walking strongly (but still a little wobbly) and playing, laughing, smiling, and just being our regular WONDERFUL William.
You will go back into the hospital in a week or so for a separate out-patient procedure. They need to make sure your intestines are all cleaned out and ready to go for your surgery. They will also retest your iron count and do a biopsy. They want to rule out a certain disease that could be the cause of all this. It is called Hirschsprung's disease. In children with Hirschsprung's disease, a lack of nerve cells in part of the intestine interrupts the signal from the brain and prevents peristalsis in that segment of the intestine. Because stool cannot move forward normally, the intestine can become partially or completely obstructed (blocked), and begins to expand to a larger than normal size. The doctors are pretty sure you don't have this disease, mostly because it usually presents itself in infancy, but they want to rule it out.
Just a little side note. . .you are awake right now and making me laugh and want to pull my hair out all at the same time. You are pulling on my hands as I try to type or typing your own letters. And you are on your feeding tube too. This has become a bit of a challenge. You need to be fed through your tube three times a day and then all night. All of these feedings have become increasingly difficult to pull off because you are so darn wiggly! You are constantly on the move during the day, so Daddy or I , or even Olivia and Lance are constantly chasing you around with your pole on wheels that has your formula on it. You have learned to push it around a little, but you just aren't strong enough to push it and your attention span isn't long enough to remember that you are even attached to anything. And then at night you roll around and wrap yourself up in the tubing, so I get up at least a couple of times to reposition you. You are little jewel. I love you so much and would do all these irritating things for the rest of my life if it meant I got to have my little boy in my life, but that doesn't keep them from being irritating :) At least the irritation has a purpose, right?
We were visiting at another church building on Sunday and as we were leaving our family walked by a mother and her son. The son was probably about 3 years old. He saw Will and said "What's that?" about three times, referring to Will's feeding tube coming out of his nose. The mother didn't know what to say, so she said nothing. Finally, the boy said, "Is that a booger?" Our whole family just started laughing. The mother was mortified. I quickly explained to the boy what the tube was for. And then Lance said, "And he has an ostomy bag too!" The whole experience helped me to better understand how, in the future, I can interact differently with people and families of people with special needs. I don't mind answering questions about Will. I like to. I know people are looking and wondering, so I would love to satisfy their curiosity. I especially appreciate what children have to say. They are so innocent and never intend to offend or hurt. They just want to know why someone is different. If anything that whole experience gave us a good laugh :)
In all ways you are doing awesome. Daddy and I were talking about you the other night and saying how we can hardly keep from smothering you with love. We are so grateful to have you back. And you are back, boy! You are a full fledged toddler. Full of personality, persistence, and playfulness. So, for now we are trying to take it all in and enjoy the little time we have before you go back into surgery and our lives get a little harder for a time. I am so very grateful to see a kind of end in sight.
I love you, my little man. Be happy. Stay strong. And know you are loved.
Your surgery to reverse your ileostomy is scheduled for the March 3rd. Whoohooo!!! We are excited to see the end of the ostomy bags somewhere in sight. The night before last I actually slept over five straight hours, only to wake up with you saying "Mama" and finding your bag had exploded. Yuck.
You are still gaining weight. You gained another two pounds, which when you are only about 20 pounds is quite a bit of weight. You are now in the 26th percentile. Yeah! The doctors were very pleased with your progress on all levels. You are walking strongly (but still a little wobbly) and playing, laughing, smiling, and just being our regular WONDERFUL William.
You will go back into the hospital in a week or so for a separate out-patient procedure. They need to make sure your intestines are all cleaned out and ready to go for your surgery. They will also retest your iron count and do a biopsy. They want to rule out a certain disease that could be the cause of all this. It is called Hirschsprung's disease. In children with Hirschsprung's disease, a lack of nerve cells in part of the intestine interrupts the signal from the brain and prevents peristalsis in that segment of the intestine. Because stool cannot move forward normally, the intestine can become partially or completely obstructed (blocked), and begins to expand to a larger than normal size. The doctors are pretty sure you don't have this disease, mostly because it usually presents itself in infancy, but they want to rule it out.
Just a little side note. . .you are awake right now and making me laugh and want to pull my hair out all at the same time. You are pulling on my hands as I try to type or typing your own letters. And you are on your feeding tube too. This has become a bit of a challenge. You need to be fed through your tube three times a day and then all night. All of these feedings have become increasingly difficult to pull off because you are so darn wiggly! You are constantly on the move during the day, so Daddy or I , or even Olivia and Lance are constantly chasing you around with your pole on wheels that has your formula on it. You have learned to push it around a little, but you just aren't strong enough to push it and your attention span isn't long enough to remember that you are even attached to anything. And then at night you roll around and wrap yourself up in the tubing, so I get up at least a couple of times to reposition you. You are little jewel. I love you so much and would do all these irritating things for the rest of my life if it meant I got to have my little boy in my life, but that doesn't keep them from being irritating :) At least the irritation has a purpose, right?
We were visiting at another church building on Sunday and as we were leaving our family walked by a mother and her son. The son was probably about 3 years old. He saw Will and said "What's that?" about three times, referring to Will's feeding tube coming out of his nose. The mother didn't know what to say, so she said nothing. Finally, the boy said, "Is that a booger?" Our whole family just started laughing. The mother was mortified. I quickly explained to the boy what the tube was for. And then Lance said, "And he has an ostomy bag too!" The whole experience helped me to better understand how, in the future, I can interact differently with people and families of people with special needs. I don't mind answering questions about Will. I like to. I know people are looking and wondering, so I would love to satisfy their curiosity. I especially appreciate what children have to say. They are so innocent and never intend to offend or hurt. They just want to know why someone is different. If anything that whole experience gave us a good laugh :)
In all ways you are doing awesome. Daddy and I were talking about you the other night and saying how we can hardly keep from smothering you with love. We are so grateful to have you back. And you are back, boy! You are a full fledged toddler. Full of personality, persistence, and playfulness. So, for now we are trying to take it all in and enjoy the little time we have before you go back into surgery and our lives get a little harder for a time. I am so very grateful to see a kind of end in sight.
I love you, my little man. Be happy. Stay strong. And know you are loved.
Saturday, January 29, 2011
Little Wonder
There definitely was an advantage to writing every day. Since we have been home, I have only been writing weekly. . .if that. As I sit here tonight and think about what to write it is all one big blur. But a good blur.
You are making a ton of progress. This past week you went to your first physical therapy appointment. It was really good. I think being in a different environment with a ton of really cool toys was highly motivating for you. Before we went you had only walked a few steps on your own, but at PT you walked a lot. After evaluating you, the physical therapist said developmentally your gross motor skills are at about a 14 month old. But he was pretty confident that all you need is to build back your strength and you will catch up. And sure enough the rest of the week you have made huge progress. I stopped helping you do everything and tried to let you do it on your own. We went to the park two days this week and you walked the whole time we were there. And ever since you have been walking everywhere. You walk like a little old man, moaning and grunting often, but you're walking.
As a whole, everything is getting better and easier. Your strength, your weight, dealing with your ostomy bag, going places on your feeding tube, sleeping. It has become our new way of life. Still, we are very anxious to have your last surgery out of the way. We should hopefully get that scheduled on Wednesday. But, our William is back. The twinkle in your eye, your laugh, even your complaints when you don't get what you want. You are getting into the dishwasher again and messing around with the computer and home entertainment electronics. I love it (but it drives your daddy nuts)!!! Well, sometimes I have to remind myself that I love it.
You are constantly being showered with love from everyone in this house. We kiss you and touch you and hug you just about every chance we get. Part of me hopes you aren't getting spoiled and part of me doesn't care. We have our little William. We almost lost you too many times. And for now, I just want to make up for those lost moments in the hospital when I so desperately wanted to hold you and kiss you and when I so desperately wanted you to respond. None of us are the same and we never will be. Our little family is different. But we are better. We are closer. We are more grateful. Our eyes have been opened to struggles we couldn't have ever imagined. And we survived. Thanks to all of the support from family and friends and our knowledge of a God that loves us and is always mindful of us.
Thank you, little man. I look at you and see so much. I see pain, suffering, anguish, and heartache. But I see a light shining through all of that. A light that overpowers the darkness. A light that will forever remind me of "these little wonders, these twists and turns of fate." You are my little wonder! I love you.
You are making a ton of progress. This past week you went to your first physical therapy appointment. It was really good. I think being in a different environment with a ton of really cool toys was highly motivating for you. Before we went you had only walked a few steps on your own, but at PT you walked a lot. After evaluating you, the physical therapist said developmentally your gross motor skills are at about a 14 month old. But he was pretty confident that all you need is to build back your strength and you will catch up. And sure enough the rest of the week you have made huge progress. I stopped helping you do everything and tried to let you do it on your own. We went to the park two days this week and you walked the whole time we were there. And ever since you have been walking everywhere. You walk like a little old man, moaning and grunting often, but you're walking.
As a whole, everything is getting better and easier. Your strength, your weight, dealing with your ostomy bag, going places on your feeding tube, sleeping. It has become our new way of life. Still, we are very anxious to have your last surgery out of the way. We should hopefully get that scheduled on Wednesday. But, our William is back. The twinkle in your eye, your laugh, even your complaints when you don't get what you want. You are getting into the dishwasher again and messing around with the computer and home entertainment electronics. I love it (but it drives your daddy nuts)!!! Well, sometimes I have to remind myself that I love it.
You are constantly being showered with love from everyone in this house. We kiss you and touch you and hug you just about every chance we get. Part of me hopes you aren't getting spoiled and part of me doesn't care. We have our little William. We almost lost you too many times. And for now, I just want to make up for those lost moments in the hospital when I so desperately wanted to hold you and kiss you and when I so desperately wanted you to respond. None of us are the same and we never will be. Our little family is different. But we are better. We are closer. We are more grateful. Our eyes have been opened to struggles we couldn't have ever imagined. And we survived. Thanks to all of the support from family and friends and our knowledge of a God that loves us and is always mindful of us.
Thank you, little man. I look at you and see so much. I see pain, suffering, anguish, and heartache. But I see a light shining through all of that. A light that overpowers the darkness. A light that will forever remind me of "these little wonders, these twists and turns of fate." You are my little wonder! I love you.
Wednesday, January 19, 2011
New Groove
Been home for over two weeks. It really feels like bringing home your first baby from the hospital. A lot of transition. A lot of sleepless nights. A lot of melt downs. But, sure enough, everything gradually evens out and you get into your new groove. We are getting there. We went to the store today and it was pretty normal. I don't ever really stop thinking about the fact that everyone is wondering why you have a tube up your nose. But, no one says anything. I don't think it would bother me though. I know people are curious. I would be. I don't think there is any harm in asking. But that is me. I know other people in this same situation would be mortified to be asked. I guess you never know unless you ask.
We went back to the hospital yesterday for a weight check. You gained a pound and a half in the past week. Way to go, little dude! Since our visit last week you have been fed entirely through your tube. I am giving you a formula that is very broken down and easy to process and filled with all the nourishment you need. I could see a difference in you within the first 24 hours of having you on "full feeds." You had more energy, were happier, and just seemed better. Throughout the week your face even filled out a little and your eyes got a little more sparkly. So, the dietitian said you needed to stay on the same diet for the next two weeks. At that time, we will go back for another visit and hopefully schedule your next operation. It's good to see the light at the end of the tunnel. It is good to be moving towards that light. It is unexplainable how much joy it gives me to see you "coming back."
You are even trying to walk a little. You are like a toddler who is first trying to walk. You cruise along the couch and then try to take a step without support and then crumble to the floor. You crawl everywhere and play and laugh and do regular little boy things.
Progress, lots of progress. It feels so good. As we were driving to the store today I was caught up in a swell of unexpected emotion. I realized, with a surety, how completely content I am. It may sound crazy at a time like this, but it's how I feel. I feel like a different or changed person from before all this. I don't care about so many of the things that used to keep me from feeling settled or happy. I can see clearly what is really important to me and I have all those things. People in my life that love me and that I love, health, a comfortable, loving home, my faith. All the other little petty things seem crazy to me now. A weight has been lifted. I can now see my life for what it truly is. I see all the good and recognize that the bad really isn't all that bad, just silly. So, thank you little man. Thank you for being my little man. Thank you for being so strong and valiant and brave. Thank you for helping your mother to learn a few important things about life.
Keep moving forward. We are all behind you, cheering you along!!!
We went back to the hospital yesterday for a weight check. You gained a pound and a half in the past week. Way to go, little dude! Since our visit last week you have been fed entirely through your tube. I am giving you a formula that is very broken down and easy to process and filled with all the nourishment you need. I could see a difference in you within the first 24 hours of having you on "full feeds." You had more energy, were happier, and just seemed better. Throughout the week your face even filled out a little and your eyes got a little more sparkly. So, the dietitian said you needed to stay on the same diet for the next two weeks. At that time, we will go back for another visit and hopefully schedule your next operation. It's good to see the light at the end of the tunnel. It is good to be moving towards that light. It is unexplainable how much joy it gives me to see you "coming back."
You are even trying to walk a little. You are like a toddler who is first trying to walk. You cruise along the couch and then try to take a step without support and then crumble to the floor. You crawl everywhere and play and laugh and do regular little boy things.
Progress, lots of progress. It feels so good. As we were driving to the store today I was caught up in a swell of unexpected emotion. I realized, with a surety, how completely content I am. It may sound crazy at a time like this, but it's how I feel. I feel like a different or changed person from before all this. I don't care about so many of the things that used to keep me from feeling settled or happy. I can see clearly what is really important to me and I have all those things. People in my life that love me and that I love, health, a comfortable, loving home, my faith. All the other little petty things seem crazy to me now. A weight has been lifted. I can now see my life for what it truly is. I see all the good and recognize that the bad really isn't all that bad, just silly. So, thank you little man. Thank you for being my little man. Thank you for being so strong and valiant and brave. Thank you for helping your mother to learn a few important things about life.
Keep moving forward. We are all behind you, cheering you along!!!
Thursday, January 13, 2011
Sacrifice
Still home. Still very grateful to be here. This past week and a half is one huge blur. The days all meld into one and sometimes the minutes even do. Last night I slept for four hours straight. It was the longest stretch I've gotten since being home. Our days are focused on keeping you safe, happy, and healthy. And any extra moments are used up on trying to make up lost moments with Olivia and Lance. But it's all worth it little dude. We love you and just want our William back. And every day we get little pieces back to make it all worth it.
We went back to the hospital for our follow-up appointment yesterday. It was a little disappointing. You have lost weight since leaving the hospital. That's not good. You don't have much to spare and gaining weight is a good indication that you are getting better, getting stronger. The dietitian put you back on a "full-feeds" diet. That means that you get all of your calories from your tube and anything you eat by mouth is a bonus. We will return to the hospital again on Tuesday for another weight check. Then, in two weeks we will meet with the surgeon again and they will hopefully set up an appointment for your final surgery. Your surgeon estimated that would be sometime at the end of February.
I think these past 10 days or so have obviously been a transition for us all. But the transition has been slightly different for each of us. I thought maybe I would give you everyone's perspective about being home.
LANCE
Hey, Willy-wum. I am so glad you are home. Did you know that every prayer I say, even if it is at breakfast, I thank Heavenly Father that you could come home. I am so very happy to have my little brother home. Playing cars and trains is more fun with you, even if I have to share. When you first came home it was kind of hard because you didn't even want me to be close to you. I like hugging you and kissing you and that was kind of a bummer. But, today I leaned over and kissed your hand and you didn't complain! I told Mommy because I was very excited. You must be getting better. I love you and would love to play hide and go seek with you sometime soon. So keep getting better, okay?
OLIVIA
William, I love you. The day you came home from the hospital seemed like Christmas, but even better. When I got off the bus you were waiting on the porch for me. I was so happy, and so excited. The first little while was great. We were all together, at home. But, soon I was sad. I didn't really understand why. But, you were home, and I was sad. Mommy and I had a talk and I realized that I had expected you to come home totally better, but you didn't. You are still really sick. You can't walk. You don't really even crawl much. You have a tube in your nose, a bag on your tummy that is gross to look at because it has poop in it, and a big owie there too. I don't really like seeing that either. It's hard. I love you so much. I love cuddling with you and playing and giving you love. But with all your stuff, it's hard. I think it must be hard for you too, because you don't totally love hugs yet. William, I am glad you are home. I just want you all better. That will be a good day.
DADDY(in Mommy's words :))
This really sucks. I really hoped you would make more progress at home. And I really hoped your last surgery would be sooner. Mommy and I (and you too) are so sick of your ostomy bags leaking and having to be changed, a lot. I love you, little man. It's so hard to see you like this and to have to do things to help you get better, but that you totally hate. I am so grateful for you and your strength and your sweetness. I just pray that I can give you all that you need to help get back to being Will.
MOMMY
I feel like everyone else. Although I knew you wouldn't be all the way better, I thought you would get better pretty fast at home. I couldn't have imagined that it would be this hard at home. But, I also couldn't have imagined how good it would feel to hold you and hug you and kiss you and have you smell like my kid, not like a hospital. The past few days when I get up close to your face with mine you reach out and pat or caress my cheeks. It melts my heart. In order to appreciate the good, we have to see the bad, right? Oh, and the good is so good! It's totally worth it. Sacrifice. I think as human beings sacrifice is critical. We grow to love more deeply the one's we sacrifice for. Through sacrifice we learn that we are capable of so much more than we thought possible. I never thought I could love you more and I never thought our family was capable of doing these hard things. But, I do love you more, and we did do hard things.
Fatten up, little light-weight!
We went back to the hospital for our follow-up appointment yesterday. It was a little disappointing. You have lost weight since leaving the hospital. That's not good. You don't have much to spare and gaining weight is a good indication that you are getting better, getting stronger. The dietitian put you back on a "full-feeds" diet. That means that you get all of your calories from your tube and anything you eat by mouth is a bonus. We will return to the hospital again on Tuesday for another weight check. Then, in two weeks we will meet with the surgeon again and they will hopefully set up an appointment for your final surgery. Your surgeon estimated that would be sometime at the end of February.
I think these past 10 days or so have obviously been a transition for us all. But the transition has been slightly different for each of us. I thought maybe I would give you everyone's perspective about being home.
LANCE
Hey, Willy-wum. I am so glad you are home. Did you know that every prayer I say, even if it is at breakfast, I thank Heavenly Father that you could come home. I am so very happy to have my little brother home. Playing cars and trains is more fun with you, even if I have to share. When you first came home it was kind of hard because you didn't even want me to be close to you. I like hugging you and kissing you and that was kind of a bummer. But, today I leaned over and kissed your hand and you didn't complain! I told Mommy because I was very excited. You must be getting better. I love you and would love to play hide and go seek with you sometime soon. So keep getting better, okay?
OLIVIA
William, I love you. The day you came home from the hospital seemed like Christmas, but even better. When I got off the bus you were waiting on the porch for me. I was so happy, and so excited. The first little while was great. We were all together, at home. But, soon I was sad. I didn't really understand why. But, you were home, and I was sad. Mommy and I had a talk and I realized that I had expected you to come home totally better, but you didn't. You are still really sick. You can't walk. You don't really even crawl much. You have a tube in your nose, a bag on your tummy that is gross to look at because it has poop in it, and a big owie there too. I don't really like seeing that either. It's hard. I love you so much. I love cuddling with you and playing and giving you love. But with all your stuff, it's hard. I think it must be hard for you too, because you don't totally love hugs yet. William, I am glad you are home. I just want you all better. That will be a good day.
DADDY(in Mommy's words :))
This really sucks. I really hoped you would make more progress at home. And I really hoped your last surgery would be sooner. Mommy and I (and you too) are so sick of your ostomy bags leaking and having to be changed, a lot. I love you, little man. It's so hard to see you like this and to have to do things to help you get better, but that you totally hate. I am so grateful for you and your strength and your sweetness. I just pray that I can give you all that you need to help get back to being Will.
MOMMY
I feel like everyone else. Although I knew you wouldn't be all the way better, I thought you would get better pretty fast at home. I couldn't have imagined that it would be this hard at home. But, I also couldn't have imagined how good it would feel to hold you and hug you and kiss you and have you smell like my kid, not like a hospital. The past few days when I get up close to your face with mine you reach out and pat or caress my cheeks. It melts my heart. In order to appreciate the good, we have to see the bad, right? Oh, and the good is so good! It's totally worth it. Sacrifice. I think as human beings sacrifice is critical. We grow to love more deeply the one's we sacrifice for. Through sacrifice we learn that we are capable of so much more than we thought possible. I never thought I could love you more and I never thought our family was capable of doing these hard things. But, I do love you more, and we did do hard things.
Fatten up, little light-weight!
Thursday, January 6, 2011
Home
We've been home for three days. It's been wonderful. Really hard, frustrating, exhausting, and somewhat nerve-racking, but wonderful. I have been meaning to write a post about it all, but I am just way too tired. It's taking all my mental and physical strength to write this. But this blog is like therapy for me. It feels good.
So, we came home around noon on Tuesday, the 4th of January. Said our goodbyes to docs and nurses. We went down to the 8th floor PICU and said some emotional goodbyes to all those angels. I'm not quite sure I will ever be able to think of them and not get choked up. They are amazing.
We loaded two wagons full of all our stuff we accumulated in the four plus weeks we were there. Mostly blankets and toys for you. Oh yeah, and all our medical supplies. Our whole dresser is now dedicated to all your gauze, saline, tape, ostomy bags, syringes, scissors, and much more.
Leaving was surreal. I cried. It was overwhelming for me to try to comprehend this journey. Walking out the same doors we walked into over four weeks ago and thinking that we had no idea what this journey would be. I had no idea how desperate I would feel, how sick you would get. But I had no idea how many miracles I would be witness to and how much good I would see in others. I had no idea how much my Heavenly Father loves me and you and all those good people.
You didn't seem all too affected by leaving. You didn't show much excitement or emotion when getting in the car and driving away. You finally smiled when we pulled into our garage and you excitedly pointed to the door that leads inside. That was sweet. Both Olivia and Lance were so very excited and happy to have you home. It felt incredible to "be a family" again. We didn't do much. Just were together.
The next few days were, like I said before, wonderful, but hard. We are doing all the same things we did in the hospital, but get to be at home. I said to Daddy tonight that I feel like a nurse, a 24/7 nurse. It's exhausting. But I wouldn't go back to that hospital in order to get some rest. I have never appreciated my bed more than I do now. I have never appreciated having Daddy next to me at night like I do now. I love being home and I know this won't last forever. I can do it. We can do it.
You are getting stronger. You did a little more crawling today. No walking yet. You sit up and play with trains and cars. Last night you pushed a car back and forth and made the vroom, vroom sound. You enjoy Olivia and Lance more and more. It's interesting. . .you really don't like having anyone but Daddy and me get too close to you. That's hard on Olivia and Lance, but they are waiting patiently for little William to get better. You also got to go to the bus stop today. So, life is slowly, very slowly getting back to normal. We have an appointment with your pediatrician tomorrow where they will check your weight and vitals. Then we have an appointment with the surgeon next Wednesday, where they will set up your next surgery to reverse your ileostomy.
Step by step. One day at a time and sometimes one minute at a time. With the bad and the hard come happiness and the joy of watching you get better.
Home. Say it out loud. Doesn't it just make you feel good inside? Every time it gets hard in the next few months I will just say that over and over to myself. Home. Home. Home. Home. William is Home!
So, we came home around noon on Tuesday, the 4th of January. Said our goodbyes to docs and nurses. We went down to the 8th floor PICU and said some emotional goodbyes to all those angels. I'm not quite sure I will ever be able to think of them and not get choked up. They are amazing.
We loaded two wagons full of all our stuff we accumulated in the four plus weeks we were there. Mostly blankets and toys for you. Oh yeah, and all our medical supplies. Our whole dresser is now dedicated to all your gauze, saline, tape, ostomy bags, syringes, scissors, and much more.
Leaving was surreal. I cried. It was overwhelming for me to try to comprehend this journey. Walking out the same doors we walked into over four weeks ago and thinking that we had no idea what this journey would be. I had no idea how desperate I would feel, how sick you would get. But I had no idea how many miracles I would be witness to and how much good I would see in others. I had no idea how much my Heavenly Father loves me and you and all those good people.
You didn't seem all too affected by leaving. You didn't show much excitement or emotion when getting in the car and driving away. You finally smiled when we pulled into our garage and you excitedly pointed to the door that leads inside. That was sweet. Both Olivia and Lance were so very excited and happy to have you home. It felt incredible to "be a family" again. We didn't do much. Just were together.
The next few days were, like I said before, wonderful, but hard. We are doing all the same things we did in the hospital, but get to be at home. I said to Daddy tonight that I feel like a nurse, a 24/7 nurse. It's exhausting. But I wouldn't go back to that hospital in order to get some rest. I have never appreciated my bed more than I do now. I have never appreciated having Daddy next to me at night like I do now. I love being home and I know this won't last forever. I can do it. We can do it.
You are getting stronger. You did a little more crawling today. No walking yet. You sit up and play with trains and cars. Last night you pushed a car back and forth and made the vroom, vroom sound. You enjoy Olivia and Lance more and more. It's interesting. . .you really don't like having anyone but Daddy and me get too close to you. That's hard on Olivia and Lance, but they are waiting patiently for little William to get better. You also got to go to the bus stop today. So, life is slowly, very slowly getting back to normal. We have an appointment with your pediatrician tomorrow where they will check your weight and vitals. Then we have an appointment with the surgeon next Wednesday, where they will set up your next surgery to reverse your ileostomy.
Step by step. One day at a time and sometimes one minute at a time. With the bad and the hard come happiness and the joy of watching you get better.
Home. Say it out loud. Doesn't it just make you feel good inside? Every time it gets hard in the next few months I will just say that over and over to myself. Home. Home. Home. Home. William is Home!
Monday, January 3, 2011
Unanswered Prayers
Let me just start off the post by saying. . .YOU'RE COMING HOME!!!! Tomorrow. Tuesday, January 4. It is hard for me to comprehend and even get excited about it, because I can't believe it is going to happen. But it is. I think the surgeons feel that you will eat better and therefore get better at home, in your own environment. You will still have your feeding tube in. Daddy and I will have to give you formula at night to make up for the calories you don't take in during the day. I am a little apprehensive about that. But we will come back at the end of the week for a check up to make sure home is the right place for you. Home :)
I have been meaning to right a post about unanswered prayers from the beginning of all of this. I remember within the first 24 hours of us being here thinking about previous prayers of mine being unanswered and how grateful I was for that. There is a Garth Brooks song that you may never want to listen to because it is an "old person's song" :), but it has a good message. It's all about how sometimes we think something would be good for us and so we pray and plead with God for that something to happen. And we wait. And nothing happens. Not only does that something not happen, but we feel as if our prayers were unheard. I can tell you that it's not a good feeling to have. Ever since before you were born, Daddy and I were thinking about trying to sell our house and buy something bigger that we could "grow" into. So, we put the house on the market in August of 2009. Well, we finally took it off the market in November of 2010. During the time it was on the market we prayed it would sell. We were sad to potentially leave our wonderful neighborhood and friends, but felt like it was something that would be good for our family. We looked at homes about 20 miles north of where we are now. We even made and offer on a house that wasn't accepted. We showed our house a lot and always received wonderful compliments, but no one made a single offer. We were stumped. We couldn't figure out what we were doing wrong. I remember feeling a little abandoned by Heavenly Father because I couldn't find a reason why this wasn't happening for us. In November, the day we finally took the sign down, I remember feeling more at peace than I had since the sign went up. In the back of my mind I remember thinking, "You know, someday something is going to happen in our lives and I am going to look back on this and say, 'Oh that's why our house didn't sell.'" Something did happen. You got sick. And I am here to tell you that sometimes our Father in Heaven doesn't answer our prayers in the way we would like. Sometimes he needs us to wait. Because He knows what is best. He knew that our family was going to need our neighbors. I can't tell you what a comfort it is to know that we are surrounded by some of the kindest people on earth. I have literally felt protected by our neighborhood this past month. Heavenly Father knew we were going to need all of our dear friends at church. I can't imagine how lonely it would have been in a new neighborhood and with new church members. The burden has been made light by all our friends. I thought about how I may have acted differently that night I took you to the ER if we had been farther away from an ER. I may have hesitated or even waited. You wouldn't have made it through the night. I firmly believe that if we are trying to do what's right and to be good people and to follow God that he will not allow us to put ourselves or loved ones in danger. We always have the choice, but if we listen to His promptings He will always protect us. I know He protected you that Friday night and gave me a little push to that ER. He knew what I needed to get you there. And, I think, He knew we would need our dear, sweet home. It is home. Every other night that I have spent there this month I have felt safe and comfortable.
One of the lines in the song says, "Some of God's greatest gifts are unanswered prayers." I know that my Heavenly Father prepared us for this trial. He prepared us by surrounding us with wonderful, amazing people who have acted as His angels during one of the greatest trials of our lives. I don't think I will ever be able to express my gratitude to God and to all the people that have loved us and supported us and prayed for us. We have been recipients of some of God's greatest gifts.
I love you, little man. See you at home!
I have been meaning to right a post about unanswered prayers from the beginning of all of this. I remember within the first 24 hours of us being here thinking about previous prayers of mine being unanswered and how grateful I was for that. There is a Garth Brooks song that you may never want to listen to because it is an "old person's song" :), but it has a good message. It's all about how sometimes we think something would be good for us and so we pray and plead with God for that something to happen. And we wait. And nothing happens. Not only does that something not happen, but we feel as if our prayers were unheard. I can tell you that it's not a good feeling to have. Ever since before you were born, Daddy and I were thinking about trying to sell our house and buy something bigger that we could "grow" into. So, we put the house on the market in August of 2009. Well, we finally took it off the market in November of 2010. During the time it was on the market we prayed it would sell. We were sad to potentially leave our wonderful neighborhood and friends, but felt like it was something that would be good for our family. We looked at homes about 20 miles north of where we are now. We even made and offer on a house that wasn't accepted. We showed our house a lot and always received wonderful compliments, but no one made a single offer. We were stumped. We couldn't figure out what we were doing wrong. I remember feeling a little abandoned by Heavenly Father because I couldn't find a reason why this wasn't happening for us. In November, the day we finally took the sign down, I remember feeling more at peace than I had since the sign went up. In the back of my mind I remember thinking, "You know, someday something is going to happen in our lives and I am going to look back on this and say, 'Oh that's why our house didn't sell.'" Something did happen. You got sick. And I am here to tell you that sometimes our Father in Heaven doesn't answer our prayers in the way we would like. Sometimes he needs us to wait. Because He knows what is best. He knew that our family was going to need our neighbors. I can't tell you what a comfort it is to know that we are surrounded by some of the kindest people on earth. I have literally felt protected by our neighborhood this past month. Heavenly Father knew we were going to need all of our dear friends at church. I can't imagine how lonely it would have been in a new neighborhood and with new church members. The burden has been made light by all our friends. I thought about how I may have acted differently that night I took you to the ER if we had been farther away from an ER. I may have hesitated or even waited. You wouldn't have made it through the night. I firmly believe that if we are trying to do what's right and to be good people and to follow God that he will not allow us to put ourselves or loved ones in danger. We always have the choice, but if we listen to His promptings He will always protect us. I know He protected you that Friday night and gave me a little push to that ER. He knew what I needed to get you there. And, I think, He knew we would need our dear, sweet home. It is home. Every other night that I have spent there this month I have felt safe and comfortable.
One of the lines in the song says, "Some of God's greatest gifts are unanswered prayers." I know that my Heavenly Father prepared us for this trial. He prepared us by surrounding us with wonderful, amazing people who have acted as His angels during one of the greatest trials of our lives. I don't think I will ever be able to express my gratitude to God and to all the people that have loved us and supported us and prayed for us. We have been recipients of some of God's greatest gifts.
I love you, little man. See you at home!
Sunday, January 2, 2011
Over the Rainbow
Well, you have gone over 48 hours without a fever. Whohooo!!!!!!!!! After 13 solid days with a fever it must feel fantastic, buddy. Way to go! One major milestone met. I asked the surgeons when they did rounds today what the next milestone is. . .when do you get to come home. They said they now want to see you weaned off your meds (which should happen in the next 24 hours) and establish some better eating habits. The eating may actually be another challenge. Your appetite still pretty much, sucks. You did eat 10 bites of pancakes this morning. But the bites were about the size of the end of my thumb. You just aren't getting in enough calories. And you aren't doing a great job at staying hydrated either. So, more waiting. While we wait you are having a good time going on a couple of wagon rides a day and making at least one trip to the playroom to work out your little muscles. You hate being in your bed when you aren't sleeping so when we are hanging out in the room you come and cuddle on the day bed with either me or Daddy. I love that! You are definitely showing signs of wanting out of this place. Good. I want out too.
I just finished watching your slide show. It had been a few days since I had looked at those pictures from when you were really sick. I can't believe that was you, William. I still struggle to comprehend that this is our life and that all this has happened to our little family. I feel bad, but I still break down every time I see the pictures of you when you were super healthy. The one where you and Olivia and Lance are standing on the landing in the entry way in your Halloween costumes is pretty painful for me to see. That's my William. And I haven't seen him in four really long weeks. I miss him! I miss being able to hold you, the right way, where I don't have to worry about hurting you. I miss your pudgy, toddler cheeks. Your sparkly eyes. Don't get me wrong. I am so deeply and truly happy that you are getting better. I love that your personality and strength are coming back. I love that I still have my little boy. But, I miss. . .I don't know how to put it into words. I want to say that I miss the old William. That is partly true. But, I know the little boy you are becoming in so much stronger and even more patient than before. I guess, what I mean is, I miss seeing you running around and laughing and playing and screaming and climbing and doing regular little boy stuff. And, even though you are getting better, the road ahead is long. So, how can I be the Mommy that you need me to be? I've got to keep looking to the future. Keep Moving Forward. Head toward that rainbow in our future.
Somewhere over the rainbow, skies are blue
And the dreams that you dare to dream really do come true.
Someday I'll wish upon a star
And wake up where the clouds are far behind me.
As I have said throughout all of this, I am so grateful for the blessings that we have received. I am so grateful for answered prayers. It is comforting to know that the clouds will pass and the sun will shine in your blue eyes again. I would wait forever for that. I love you. I have one last thing to say to you, EAT!
xoxo Mommy
I just finished watching your slide show. It had been a few days since I had looked at those pictures from when you were really sick. I can't believe that was you, William. I still struggle to comprehend that this is our life and that all this has happened to our little family. I feel bad, but I still break down every time I see the pictures of you when you were super healthy. The one where you and Olivia and Lance are standing on the landing in the entry way in your Halloween costumes is pretty painful for me to see. That's my William. And I haven't seen him in four really long weeks. I miss him! I miss being able to hold you, the right way, where I don't have to worry about hurting you. I miss your pudgy, toddler cheeks. Your sparkly eyes. Don't get me wrong. I am so deeply and truly happy that you are getting better. I love that your personality and strength are coming back. I love that I still have my little boy. But, I miss. . .I don't know how to put it into words. I want to say that I miss the old William. That is partly true. But, I know the little boy you are becoming in so much stronger and even more patient than before. I guess, what I mean is, I miss seeing you running around and laughing and playing and screaming and climbing and doing regular little boy stuff. And, even though you are getting better, the road ahead is long. So, how can I be the Mommy that you need me to be? I've got to keep looking to the future. Keep Moving Forward. Head toward that rainbow in our future.
Somewhere over the rainbow, skies are blue
And the dreams that you dare to dream really do come true.
Someday I'll wish upon a star
And wake up where the clouds are far behind me.
As I have said throughout all of this, I am so grateful for the blessings that we have received. I am so grateful for answered prayers. It is comforting to know that the clouds will pass and the sun will shine in your blue eyes again. I would wait forever for that. I love you. I have one last thing to say to you, EAT!
xoxo Mommy
Saturday, January 1, 2011
Dawn
A Post from your Daddy:
It was late Friday night/early Saturday morning four weeks ago that we took you to the emergency room and then to Doernbecher’s for your emergency surgery. There have been a lot of ups and downs since then which have been accompanied by a ton of prayers and sleepless nights by your family and friends. Today is the first day of a new year, 2011, and with it comes the rise of the sun for you in your health. Right before dawn is that time of day that seems the darkest. It’s when our bodies seem to be the most tired and unwilling to awake. Dawn is that time of day when you start to see the light of the sun peeking over the horizon. It signifies a new day, a new beginning, and a new start to whatever you’re working through in life. Today is your dawn…so it is only fitting that today be 1/1/2011, the first day of the new year.
There are several reasons today is your “dawn.” First, you finally made it 24 hours without a fever. This is a first since coming to the hospital. Keep in mind that a fever by the doctor’s and nurse’s definition is 101.5 degrees. So, your body temperature is finally starting to drop back into the “close to normal” range. Second, you have finally started to eat and not need to be tube fed as much. For the past few weeks since the doctors stopped feeding you intravenously, you have been fed thru a small tube that goes up your nose, down your throat, and directly into your stomach. We have tried to get you to eat food, but you haven’t shown hardly any interest at all. So, Mommy and Daddy have been ordering you just about everything on the hospital patient menu to see what you’d be interested in. Today, we found out you were getting your appetite back and had pancakes (6 bites) and eggs (5 bites). You also drank grape juice (2 ounces) and a smoothie drink called “Naked”…something else that just kind of fits for you since you like to not have clothes on whenever possible. And third, when the surgeons came to see you this morning the head surgeon looked at you and said, “Whoa! You look a lot better, William! Good job getting better!” You are getting better, a little bit each day.
There have been a lot of people praying for you and sending you good wishes, Little Man. The support your family and you have received from friends and family, people from church and work, wonderful neighbors and even people we don’t know has been astounding. As your daddy types this blog post out his eyes are filling with tears knowing and remembering how dark the night seemed to be at times, how much despair and pain we went through together, and how close we came to losing you in this life…on too many occasions. What a joy it is to see you getting stronger, smiling, and turning back into the little boy that we have always loved so much.
Keep eating, drinking, and filling that ostomy bag up (that’s nasty stuff you make by the way – way worse than a diaper, but it’s like precious gold to us because it means your insides are working). Keep fighting to get better. Keep receiving the prayers and warm wishes people have offered for you, your nurses and doctors, and for your family. And, know forever that it’s because of those prayers, and the tender mercies of your Father in Heaven, that you are getting better. We’ve seen far too many miracles in our hospital and operating rooms these past four weeks to doubt that.
Your Daddy loves you Will…today, tomorrow, and forever. Sleep well tonight and know that today was your “dawn” and that the road ahead will continue to get brighter.
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