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
Sunday, February 20, 2011
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!
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