It has been a really memorable Christmas. We have had a lot of fun opening presents, eating Christmas candy, and spending time with family. Currently our hospital room looks like some kind of Christmas bomb went off leaving the debris of paper, gift bags, and toys all over... there is barely room to walk. This room always feels small, but you stuff our extended family and two wagons full of presents in here and it's enough to make my blood pressure rise. Fortunately, this is a good kind of stress and my boys are loving every minute of it. They are so cute, playing together with all their new stuff, especially now that Caleb is at the age where he wants to do whatever Jonah is doing. With that in mind, we got Caleb a lightsaber since Jonah has one. In hindsight, that might not have been my greatest parenting choice. At least we are already in a hospital, right?
Caleb's doing pretty well. I was hoping all the holiday goodies would entice him to eat more, but all last week he just continued to eat less and less until he was pretty much only taking a bite or two at meals. So on Saturday the doctors decided to increase his milrinone, which is something I was really hoping would not happen. (Recap: Milrinone is the powerful drug that is in a PICC line that runs all the way into Caleb's heart. It is helping his heart to contract and is considered a "life support" measure at this high of a dose. He is almost to the maximum dosage.) The doctors assured me, however, that they are simply trying to get him to eat and are not concerned that his heart function is getting worse. And that if they need to, they could probably go up just a little more, so we still have at least a tiny buffer if he needs it. Yesterday the medicine must have started to work because he did eat a little more with each meal. He had an echo today to see how his heart is doing and I am anxious for the doctors to read the results. Praying that it hasn't gotten worse.
I was really hoping that we would get a heart by Christmas. Now that Christmas has come and gone, I'm starting to come to terms with the fact that we might be here a really long time. I know it could be any minute, but in my mind I am starting to think maybe it will be a while. And I'm ok with that. I want to go home of course, and I desperately want my family to all be together under one roof, but I know that some day when this is all over, I will look back and realize this wasn't that long of a time. I went sort of crazy a few weeks ago wanting to be done with all this, and in the last few days I've started to have a new level of patience with this season of my life. I know we can do this... we've already been here for two whole months and I feel stronger than I did when this started. It's not the timeline I would have chosen, but I'm getting less and less bent out of shape when things don't go the way I would have chosen. Caleb obviously feels secure and comfortable here, and we're managing to have some kind of normal family life. Might as well stop thinking about these days as "Days I Wish I Was Doing Something Else" and just enjoy them for what they are. Because there are much worse ways to pass some time and I have so much to enjoy. Like a lightsaber-weilding toddler and a four-year-old who is relishing the fact that he is allowed to eat WAY more candy than usual right now. Much love to you all and praying that you too are finding the joy and blessings that are right in front of you.
Wednesday, December 26, 2012
Sunday, December 16, 2012
Relaxing... a little
I wanted to update everyone on how Caleb's been doing the past couple days. We met with the doctor this morning and she did NOT believe that Caleb's heart function was the reason that his appetite was poor; she said he would probably have other symptoms if that was the case. And since Caleb continues to otherwise seem the same, she did not believe it was necessary to increase his dose of milirinone. [Insert sigh of relief.] His weight has remained exactly the same for the past 2 days, no gain or loss. His appetite has even been a little better, thank you God! We're fighting for every calorie we can get in that kid. What a diet... I would love it if a doctor was "forcing" me to eat pizza, ice cream, french fries and chocolate. Let's be honest, no doctor would have to twist my arm.
I'm relaxing a tiny bit today. No medical changes for now. Still praying fervently for God to move in the minds of any family that might be going through a tragedy this week... I'm praying that God would give them the strength and courage and grace to choose to donate organs if the decision is presented to them. Caleb needs a heart and I'm still praying it's TODAY.
I'm relaxing a tiny bit today. No medical changes for now. Still praying fervently for God to move in the minds of any family that might be going through a tragedy this week... I'm praying that God would give them the strength and courage and grace to choose to donate organs if the decision is presented to them. Caleb needs a heart and I'm still praying it's TODAY.
Friday, December 14, 2012
We need a heart!
This morning I walked over to the hospital from the Ronald McDonald House by myself while Daniel and Jonah spent the morning playing and spending some quality time together. It was good to go outside and talk to God on my way over. I can definitely feel His presence with me these last few days, reminding me how much He loves me and that He hasn't left me. Man, that's a good thing because I need Him so much right now. God is really keeping the depression at bay and helping me take this one day (or one hour) at a time. Good friends (and good parents) sure help. Wow, I love the people in my life. I don't know what I would do without them!
Caleb is reminding me this week that he is in fact a really sick kid, even though I forget sometimes after a string of good, boring days. The last few days Caleb's appetite has really decreased. They started counting his calories because he wasn't gaining weight, and as the week has gone on, he's been eating less and less and today even posted a slight weight loss. We talked with the doctors today and they're hoping it's just Caleb being a typical toddler and being picky. But if he doesn't start eating again by tomorrow night, they're going to increase his milirinone, which is the powerful drug he has in a continuous IV drip. It is literally contracting his heart. Being on milirinone is the reason he qualifies for the highest category on the transplant list; it's a big-time drug. What bothers me is that Caleb's already on such a high dose that there's not much room to increase. They're getting close to the maximum dosage, which makes me uncomfortable because we'll have no buffer zone after that. Plus, he needs to be gaining weight right now so he's strong enough for his transplant. Today when the doctors were a little concerned, it was like a gut punch. I forget sometimes just how sick he is and how badly he needs a new heart. But it's spurring me to pray hard for Caleb today and I wanted to invite you to do the same.
We need to pray:
1- That Caleb's appetite would come back and he would gain weight again.
2- That God would provide a heart for Caleb SOON! Let's pray that Caleb gets a heart THIS WEEKEND!
3-That Daniel and I would have control of our minds and not give in to fear.
Pray, pray, pray when you think of Caleb today. Prayer makes a real difference in the Kingdom of God so help us by speaking Caleb's requests to our Father!
Caleb is reminding me this week that he is in fact a really sick kid, even though I forget sometimes after a string of good, boring days. The last few days Caleb's appetite has really decreased. They started counting his calories because he wasn't gaining weight, and as the week has gone on, he's been eating less and less and today even posted a slight weight loss. We talked with the doctors today and they're hoping it's just Caleb being a typical toddler and being picky. But if he doesn't start eating again by tomorrow night, they're going to increase his milirinone, which is the powerful drug he has in a continuous IV drip. It is literally contracting his heart. Being on milirinone is the reason he qualifies for the highest category on the transplant list; it's a big-time drug. What bothers me is that Caleb's already on such a high dose that there's not much room to increase. They're getting close to the maximum dosage, which makes me uncomfortable because we'll have no buffer zone after that. Plus, he needs to be gaining weight right now so he's strong enough for his transplant. Today when the doctors were a little concerned, it was like a gut punch. I forget sometimes just how sick he is and how badly he needs a new heart. But it's spurring me to pray hard for Caleb today and I wanted to invite you to do the same.
We need to pray:
1- That Caleb's appetite would come back and he would gain weight again.
2- That God would provide a heart for Caleb SOON! Let's pray that Caleb gets a heart THIS WEEKEND!
3-That Daniel and I would have control of our minds and not give in to fear.
Pray, pray, pray when you think of Caleb today. Prayer makes a real difference in the Kingdom of God so help us by speaking Caleb's requests to our Father!
Tuesday, December 11, 2012
Perseverance
The days are long but the years are... also long. Wow, waiting is a really hard place to be sometimes. It's getting harder and harder to muster up some joy and energy. I know the right things to say when people ask me how I'm doing. And I really don't want to bum people out by telling them that I just don't want to be here right now, that I really just want to be home enjoying my Christmas tree and watching Christmas movies like everyone else. I miss being a family together. Jonah's feeling it too. When we prayed together before bed the last night he was here, which was last Thursday, he said, "I just want to pray that Caleb gets better so we can all go home." I hear ya, buddy, don't we all.
On the positive side, we've been here so long that I'm pretty sure Caleb either doesn't remember our home or just doesn't think about it anymore. He has stopped asking to "go bye-bye" and has just accepted that this is where we live. I realize that's a good thing because at least he is content and not sad about being in the hospital. He has become amazingly accepting of all the things doctors and nurses do to him... he even will mimic what the doctors do by trying to do the same thing to his stuffed dog, Artie. When the nurse gives Caleb medicine, Caleb gives Artie medicine. When the nurse cleans Caleb's dressing on his arm where his PICC line is, Caleb wants an alcohol wipe too so he can clean Artie's arm. It's pretty stinking cute. I'm thankful he is accepting his reality better than his mommy is right now.
We have no idea when Caleb might get a heart. It could be today, it could be in March. Please, God, don't let it be in March. Or if we're going to be here until then, help me be strong! I joined a facebook page for heart transplant families and one of the moms told me yesterday to remember that these days are not days for waiting, they're days for living. I guess that's what you can pray for me right now.
Prayer requests:
1- Pray for us to have perseverance. Pray for us to be strong and steady and endure these days with patience.
2- Pray for us to be disciplined to spend time with God, to look to Him to fill us up when we are depleted.
3- Pray for a heart to come soon!
Love to you all!
On the positive side, we've been here so long that I'm pretty sure Caleb either doesn't remember our home or just doesn't think about it anymore. He has stopped asking to "go bye-bye" and has just accepted that this is where we live. I realize that's a good thing because at least he is content and not sad about being in the hospital. He has become amazingly accepting of all the things doctors and nurses do to him... he even will mimic what the doctors do by trying to do the same thing to his stuffed dog, Artie. When the nurse gives Caleb medicine, Caleb gives Artie medicine. When the nurse cleans Caleb's dressing on his arm where his PICC line is, Caleb wants an alcohol wipe too so he can clean Artie's arm. It's pretty stinking cute. I'm thankful he is accepting his reality better than his mommy is right now.
We have no idea when Caleb might get a heart. It could be today, it could be in March. Please, God, don't let it be in March. Or if we're going to be here until then, help me be strong! I joined a facebook page for heart transplant families and one of the moms told me yesterday to remember that these days are not days for waiting, they're days for living. I guess that's what you can pray for me right now.
Prayer requests:
1- Pray for us to have perseverance. Pray for us to be strong and steady and endure these days with patience.
2- Pray for us to be disciplined to spend time with God, to look to Him to fill us up when we are depleted.
3- Pray for a heart to come soon!
Love to you all!
Tuesday, December 4, 2012
My new friend Andrew Luck
I think I might try to start any new conversations this week with, "So my new friend Andrew Luck came to see us today..." Seriously! Today I was walking through the lobby at Riley and who should walk right past me but Andrew Luck! He comes to Riley to visit kids sometimes and I decided to walk up and introduce myself. He ended up coming up to our room, signed a jersey for Caleb (his idea!!) and became my new favorite person. What an amazingly humble, kind guy. He tried to give Caleb "knucks", but Caleb stared at him, wide-eyed, probably because he was so tall. It was an awesome visit. He and Daniel joked around and I tried my best to act normal but instead felt like a starstruck idiot. Anyways, it was a super cool experience!
Sunday, December 2, 2012
The "I" Word
It's been a good week and Caleb has been in great spirits. We fill our days with playing in the play room, wagon rides, and plenty of play-doh. Caleb started physical therapy this week and he now gets that 3 times a week. The doctors want him to build up some strength and use those tiny little bird legs as much as possible. I've seen improvement already. We get him out of bed a lot and get him walking around the floor. He loves this and so do the nurses, because it's Caleb's habit to stop and give a hug to each person he passes. What a flirt.
Caleb had an echocardiogram this week and the doctor said nothing has changed. His heart is functioning at about 35% and is enlarged. He is stable though and they don't anticipate anything really changing much between now and his heart transplant.
Speaking of transplant, we had a really cool experience yesterday. Every year, the NCAA hosts a Christmas party for all the Riley heart transplant kids and their families. We got to attend and it was amazing to see all these kids who have had a heart transplant and are doing well. There were toddlers who just got a new heart this year and teenagers who have had their hearts for 15 years. There were about 200 people there and it was so inspiring to see this community that we are now part of. It was like a big family. We met one family who had four sons, three of whom were born with heart defects. And of the three who had heart defects, two have passed away. And yet this family was AMAZING. We met all these people and listened to their stories and felt so proud to be a part of this group. And so excited to think about next year when Caleb will be there with us with his new heart.
I really want to talk about this whole idea of being "inspired". People tell us all the time that we are an inspiration and I'm not really comfortable with that. It's not because I'm super modest and don't want the attention; it's because I want to know exactly what people mean when they say that. If you're like me, lots of things can inspire you, but then you can turn around and go back to your life and that "inspiration" has no real lasting impact. Being an "inspiration" is nice, but I'm more interested in having an impact. An inspiration can be a fleeting emotion, but an impact means something in your life is different or changed. Now don't get me wrong, it's very complimentary when people tell us we're an inspiration. I just want to take the conversation a step further and ask, has Caleb's story changed you in any way? Because as Christians, lots of things can convict us, encourage us, inspire us, but we can easily walk away and forget what God just said to us. I'm struggling with this myself. I hope that I'm really a different person because of all the stuff I've been through. God has taught me a lot in these days at the hospital but even the most eye-opening revelation can slip out of my mind after time passes. (Confession: Especially because I spend too much time watching tv and not enough time with God.)
How about you? If you've felt inspired by our story, what is it that you're inspired to do, or be? Has your life been impacted in some way? Has God spoken to you about Caleb's story, and if so, what have you done in response to His voice? I'd love to hear your answer to these questions. Please! :)
For now, thanks for your continued prayers. And this little guy thanks you too.
Tuesday, November 20, 2012
Perspective
Caleb has a lot of "jokes" right now that he believes to be hilarious; they're not actually that funny, but he is so cute, and so popular with the nurses, that they laugh at him and now he thinks he's a comedian. One of his favorite "jokes" is to pretend to sneeze. Another is to put whatever he's eating on his head. That one actually is pretty funny. Looking over and seeing a half-eaten chicken nugget just resting on his head would make anyone laugh. See picture below.
We have had several very good days in a row. Caleb has been in a really good mood, and has even become much more social here at the hospital than he has ever been. He calls his nurses by their names, plays and sings with whomever will give him attention. It's actually awesome to see his little personality shining.
I have experienced a personal revival in the last couple days. To be honest, all last week I was slowly sinking into a depression. Every day I struggled to accept our circumstances and would fight off tears every time I thought about the life I am missing out on now that my family has been relocated to a hospital. Then on Sunday while driving back to the hospital, I spent some much-needed time with God, alone and focused, and I started out just listening to some songs about Jesus. I listened to one particular song over and over and just let the truth of the words sink into my head and my heart, and suddenly a thought came to me that was truly a break-through moment. I thought about how excited I've been to go home and how that return to normal life will be such a precious experience after everything we've gone through. I realized how my level of thankfulness and appreciation will be through the roof, because of how painful this time has been. Because I will have experienced this contrast, this season of dark and painful times will make that homecoming so much brighter. And THEN, I realized something even greater. If I think THAT homecoming is going to be great, how much greater of a homecoming, how much sweeter and richer will it be the day that I walk into Jesus' presence in heaven? After experiencing the depth of pain that this life can bring, how much more JOY will I know when I leave this world and step into the Kingdom of Heaven, when God makes me new, and makes Caleb new, and there will be no more tears or death or painful joints or sick hearts. And in that moment, I was so overwhelmingly thankful for how hard life has been at times. I was so thankful that this life hasn't been smooth and easy, because it's those of us who have suffered the most that can also know the deepest joy.
And my heart swelled and I praised God at the top of my lungs and laughed and cried as I worshiped, and people passing me in their cars probably thought I was out of my mind. And I was! I was out of my mind with the thought of how beautiful our Savior is, and how much He really has saved me from... my sin, my hopelessness, my fear, it's all swallowed up by this love that is so much greater than I even understand. All I had to do was think about His love for a little bit and I remembered that I don't live like those who have no hope. And I've been smiling ever since.
The hope I have in Him doesn't erase my pain, but it changes it. It makes the pain bearable and it gives me the perspective that this is all so temporary. The Bible says our lives are like the morning fog, which is here a little while and then it's gone. What's amazing to me is that God doesn't just say, "Sorry this sucks, but someday you'll be with me in heaven so just endure it." Instead, He comes right alongside me NOW, in THIS life, and gives me a joy and peace that has nothing to do with what I'm going through. Who wouldn't want that? Who wouldn't want Him?
It's so strange to me that anyone is even reading these little blog entries... but if you are reading this, let me tell you that I'm so thankful that you care about Caleb and about us. Thank you for keeping up with what's happening in our life. And I hope that you'll forgive me for not being able to shut up about Jesus. I like talking about Caleb, but I love talking about Jesus. If you know Him too, then you understand. And if you don't know Him, or you thought you did know Him and yet haven't experienced this joy and peace that I'm talking about, by all means let's chat. I mean it. March yourself up here to Room 4158 and let's talk. I'm thrilled people are praying for Caleb, but the reason I write about his story is not so you know the details of our life; it's so you'll hear the REAL story I'm writing about, the story of a God who is worth following. You might be praying for me, but please know I'm praying for you too.
We have had several very good days in a row. Caleb has been in a really good mood, and has even become much more social here at the hospital than he has ever been. He calls his nurses by their names, plays and sings with whomever will give him attention. It's actually awesome to see his little personality shining.
I have experienced a personal revival in the last couple days. To be honest, all last week I was slowly sinking into a depression. Every day I struggled to accept our circumstances and would fight off tears every time I thought about the life I am missing out on now that my family has been relocated to a hospital. Then on Sunday while driving back to the hospital, I spent some much-needed time with God, alone and focused, and I started out just listening to some songs about Jesus. I listened to one particular song over and over and just let the truth of the words sink into my head and my heart, and suddenly a thought came to me that was truly a break-through moment. I thought about how excited I've been to go home and how that return to normal life will be such a precious experience after everything we've gone through. I realized how my level of thankfulness and appreciation will be through the roof, because of how painful this time has been. Because I will have experienced this contrast, this season of dark and painful times will make that homecoming so much brighter. And THEN, I realized something even greater. If I think THAT homecoming is going to be great, how much greater of a homecoming, how much sweeter and richer will it be the day that I walk into Jesus' presence in heaven? After experiencing the depth of pain that this life can bring, how much more JOY will I know when I leave this world and step into the Kingdom of Heaven, when God makes me new, and makes Caleb new, and there will be no more tears or death or painful joints or sick hearts. And in that moment, I was so overwhelmingly thankful for how hard life has been at times. I was so thankful that this life hasn't been smooth and easy, because it's those of us who have suffered the most that can also know the deepest joy.
And my heart swelled and I praised God at the top of my lungs and laughed and cried as I worshiped, and people passing me in their cars probably thought I was out of my mind. And I was! I was out of my mind with the thought of how beautiful our Savior is, and how much He really has saved me from... my sin, my hopelessness, my fear, it's all swallowed up by this love that is so much greater than I even understand. All I had to do was think about His love for a little bit and I remembered that I don't live like those who have no hope. And I've been smiling ever since.
The hope I have in Him doesn't erase my pain, but it changes it. It makes the pain bearable and it gives me the perspective that this is all so temporary. The Bible says our lives are like the morning fog, which is here a little while and then it's gone. What's amazing to me is that God doesn't just say, "Sorry this sucks, but someday you'll be with me in heaven so just endure it." Instead, He comes right alongside me NOW, in THIS life, and gives me a joy and peace that has nothing to do with what I'm going through. Who wouldn't want that? Who wouldn't want Him?
It's so strange to me that anyone is even reading these little blog entries... but if you are reading this, let me tell you that I'm so thankful that you care about Caleb and about us. Thank you for keeping up with what's happening in our life. And I hope that you'll forgive me for not being able to shut up about Jesus. I like talking about Caleb, but I love talking about Jesus. If you know Him too, then you understand. And if you don't know Him, or you thought you did know Him and yet haven't experienced this joy and peace that I'm talking about, by all means let's chat. I mean it. March yourself up here to Room 4158 and let's talk. I'm thrilled people are praying for Caleb, but the reason I write about his story is not so you know the details of our life; it's so you'll hear the REAL story I'm writing about, the story of a God who is worth following. You might be praying for me, but please know I'm praying for you too.
Thursday, November 15, 2012
Happy thoughts
I love my husband. I always knew that I had married up, but it's more obvious than ever. I feel like a hot mess about 90% of the time, but he is so steady. I know he has his moments where he feels stressed here, or wishes we had someone else's life, but he is leading our family through this time with a level of patience and strength that should win him some kind of award. Daniel went home last night for the first time to spend time with Jonah, and I immediately wished he was back here. When I went home, he was sending me texts saying things were great and to take my time. When he went home, it took me about 5 seconds to be anxious for his return. I am so thankful for him. Best decision I ever made.
Today has been pretty good; it's always good when all four of us are back together. Caleb has been smiling and playing a lot and I breathe easy when he's in a good mood. I realized today I have this constant fear of Caleb getting depressed. It came out of my mouth while we were eating lunch and Daniel reminded me that he's not even 2 years old, and that even if he's cranky while we're here, he won't remember this time in his little life. That helped. As a mommy, it breaks my heart that the rest of us can get out of that hospital room when we need to, but Caleb can't. Please pray for his little mood, for his spirits to stay up, and for him to be easily distracted when he starts to get fed up with his reality.
Here's another thing to pray for. As my close friends know, it has been my dream for years to have a bigger house. Daniel and I have lived in our wonderful, happy, little house for 8 years and we love all 900 square feet. However, I have always dreamed of having a home that was large enough to have friends over, to have a big table with a crowd around it, and plenty of room for my kids and their friends to run around. Just a few weeks ago, an opportunity came to us to possibly buy a home that would be my dream house... and then we went to the hospital. In yet another example of the generosity of others, there are a few people working for us to sell our house while we live in the hospital. I visited the "new house" while I was home this week, and I teared up just picturing my family all home together there. I had this picture of a fire going in the fireplace, Daniel playing with the boys on the floor and me in the kitchen cooking supper. When I have a hard day, I often picture that little scene in my head. It almost feels like too much to hope for; for Caleb to have a new heart, and all of my family to be home together in a new house that's a dream come true. If I can trouble you for another prayer request, would you pray that God would bless us with this new home? And if you know someone who might be interested in a sweet little 2-bedroom house, let me know. :)
So, to summarize, here's our prayer request list today:
1- Pray for Caleb's spirits to stay up.
2- Pray for me to rest when I need to, and to be able to get out of here sometimes and get refreshed.
3- Pray for our house to sell and for the blessing of a new home.
4- Pray for Caleb's perfect heart to come as soon as possible!
Today has been pretty good; it's always good when all four of us are back together. Caleb has been smiling and playing a lot and I breathe easy when he's in a good mood. I realized today I have this constant fear of Caleb getting depressed. It came out of my mouth while we were eating lunch and Daniel reminded me that he's not even 2 years old, and that even if he's cranky while we're here, he won't remember this time in his little life. That helped. As a mommy, it breaks my heart that the rest of us can get out of that hospital room when we need to, but Caleb can't. Please pray for his little mood, for his spirits to stay up, and for him to be easily distracted when he starts to get fed up with his reality.
Here's another thing to pray for. As my close friends know, it has been my dream for years to have a bigger house. Daniel and I have lived in our wonderful, happy, little house for 8 years and we love all 900 square feet. However, I have always dreamed of having a home that was large enough to have friends over, to have a big table with a crowd around it, and plenty of room for my kids and their friends to run around. Just a few weeks ago, an opportunity came to us to possibly buy a home that would be my dream house... and then we went to the hospital. In yet another example of the generosity of others, there are a few people working for us to sell our house while we live in the hospital. I visited the "new house" while I was home this week, and I teared up just picturing my family all home together there. I had this picture of a fire going in the fireplace, Daniel playing with the boys on the floor and me in the kitchen cooking supper. When I have a hard day, I often picture that little scene in my head. It almost feels like too much to hope for; for Caleb to have a new heart, and all of my family to be home together in a new house that's a dream come true. If I can trouble you for another prayer request, would you pray that God would bless us with this new home? And if you know someone who might be interested in a sweet little 2-bedroom house, let me know. :)
So, to summarize, here's our prayer request list today:
1- Pray for Caleb's spirits to stay up.
2- Pray for me to rest when I need to, and to be able to get out of here sometimes and get refreshed.
3- Pray for our house to sell and for the blessing of a new home.
4- Pray for Caleb's perfect heart to come as soon as possible!
Monday, November 12, 2012
Day 11... and counting
At some point, I'm going to need to go shopping and get myself some new pants... apparently having a sick child has become my unintended weight-loss program. It's also my Look-10-Years-Older-in-10-Days program, so I wouldn't recommend it. What can you do? Someday soon I'll eat and sleep better and maybe not look so haggard. I've got bigger things to be concerned about anyway.
Today was a good day and I really needed that. Caleb has been stable and in good spirits for the last several days, and Daniel and I decided it was safe(ish) to start taking turns going home. I got to go first, and last night I went home with Jonah and slept in my bed and read a newspaper and stayed in my jammies until noon. It was absolute heaven... except I missed Caleb so much. Daniel and I talked on the phone or texted about every hour in the time I was gone, which was less than 24 hours. I decided to take Jonah on a lunch date, and I told him he could pick anywhere he wanted to go. He thought about that for a second and said, "Mommy, where's your favorite place?" I said, "My favorite place is Pizza King." Jonah said, "Then I pick Pizza King because I love it when you're happy." I started to tear up, as I'm in the habit of doing about once every 5 seconds, and hugged him until he was sick of me. We had a wonderful date that included playing Michael Jackson on the jukebox and eating 7 breadsticks between the two of us.
I came back to the hospital this afternoon, so ready to see my other boy. He was doing great. When I walked into his room, Caleb clapped and grinned and said, "Mommy!" and I teared up again. Why I even bother putting mascara on in the morning, I don't know. I have prayed and prayed that Caleb's spirits would stay up, that he wouldn't get depressed being here but would be calm and happy. And God has been answering that prayer, because that kid is hamming it up and has every nurse around here wrapped around his finger. I will never be able to parent this child when we get home because he totally thinks it's normal for people to bring him "goo-kies" any time he asks.
We're doing ok. Daniel and I have our moments where one of us is on the verge of a breakdown, but we encourage each other and keep going. We're accepting our reality and looking SO forward to that moment when we get a phone call saying we've got a heart. People have been asking questions about the transplant process- here are a few details. We can get a heart from as far away as 1500 miles. They gotten hearts from as far away as Phoenix, Las Vegas, and Toronto, Canada. There is a team of 3 surgeons here who do the transplants; at any given time, 2 of them are available. When we get a call that there's a heart somewhere, one of the surgeons takes off in a Lear jet (no joke), goes and surgically removes the heart, then brings it back to pass it off to another surgeon, who goes into the operating room and will put it into Caleb's chest. The amount of time between the heart being removed from one body and placed into Caleb's body has to be less than 4 hours. Now that Caleb is officially on the transplant list, we could get the call any minute. And when we get the call, we go right then and Caleb goes almost immediately to the operating room. It's a pretty amazing process.
Things to pray for today:
1- Pray for Caleb's spirits to stay up, for him to find happiness in his routine here.
2- Pray for the perfect heart to become available as soon as possible.
3- Pray for our marriage to be strong and for us to be able to support each other and somehow still invest in our relationship in the midst of this craziness.
Much love to you all- if you're wearing your Praying for Caleb t-shirts or bracelets, please post your picture on facebook. We LOVE to see that!
Today was a good day and I really needed that. Caleb has been stable and in good spirits for the last several days, and Daniel and I decided it was safe(ish) to start taking turns going home. I got to go first, and last night I went home with Jonah and slept in my bed and read a newspaper and stayed in my jammies until noon. It was absolute heaven... except I missed Caleb so much. Daniel and I talked on the phone or texted about every hour in the time I was gone, which was less than 24 hours. I decided to take Jonah on a lunch date, and I told him he could pick anywhere he wanted to go. He thought about that for a second and said, "Mommy, where's your favorite place?" I said, "My favorite place is Pizza King." Jonah said, "Then I pick Pizza King because I love it when you're happy." I started to tear up, as I'm in the habit of doing about once every 5 seconds, and hugged him until he was sick of me. We had a wonderful date that included playing Michael Jackson on the jukebox and eating 7 breadsticks between the two of us.
I came back to the hospital this afternoon, so ready to see my other boy. He was doing great. When I walked into his room, Caleb clapped and grinned and said, "Mommy!" and I teared up again. Why I even bother putting mascara on in the morning, I don't know. I have prayed and prayed that Caleb's spirits would stay up, that he wouldn't get depressed being here but would be calm and happy. And God has been answering that prayer, because that kid is hamming it up and has every nurse around here wrapped around his finger. I will never be able to parent this child when we get home because he totally thinks it's normal for people to bring him "goo-kies" any time he asks.
We're doing ok. Daniel and I have our moments where one of us is on the verge of a breakdown, but we encourage each other and keep going. We're accepting our reality and looking SO forward to that moment when we get a phone call saying we've got a heart. People have been asking questions about the transplant process- here are a few details. We can get a heart from as far away as 1500 miles. They gotten hearts from as far away as Phoenix, Las Vegas, and Toronto, Canada. There is a team of 3 surgeons here who do the transplants; at any given time, 2 of them are available. When we get a call that there's a heart somewhere, one of the surgeons takes off in a Lear jet (no joke), goes and surgically removes the heart, then brings it back to pass it off to another surgeon, who goes into the operating room and will put it into Caleb's chest. The amount of time between the heart being removed from one body and placed into Caleb's body has to be less than 4 hours. Now that Caleb is officially on the transplant list, we could get the call any minute. And when we get the call, we go right then and Caleb goes almost immediately to the operating room. It's a pretty amazing process.
Things to pray for today:
1- Pray for Caleb's spirits to stay up, for him to find happiness in his routine here.
2- Pray for the perfect heart to become available as soon as possible.
3- Pray for our marriage to be strong and for us to be able to support each other and somehow still invest in our relationship in the midst of this craziness.
Much love to you all- if you're wearing your Praying for Caleb t-shirts or bracelets, please post your picture on facebook. We LOVE to see that!
Saturday, November 10, 2012
Good morning!
It's been a good morning already... who doesn't love pancakes?
We are praying, praying, praying for this sweet boy to have a new heart soon!
Friday, November 9, 2012
LIST!
Amazing news! As of an hour ago, Caleb is officially on the list for a heart transplant! This is HUGE! He could now get a heart any time and we need to PRAY that the perfect heart comes available as soon as possible! Lord, you hold the future in Your hands and the timing of all things is Yours. We trust you to provide!
Thursday, November 8, 2012
Has it really only been a week?
It blows my mind that it was a week ago right now that I was filling out paperwork to admit Caleb to the hospital for a heart cath... it feels like a month has passed. The days are inching along and at times I feel like I'm going to lose my mind in this hospital. I knew I would have good days and bad days (or good hours and bad hours). On Tuesday night I started to feel like the walls were closing in on me and I couldn't possibly imagine doing this for an indefinite amount of time. And I started thinking about how even if a new heart comes, there's no guarantee his body won't reject it. And the fears and worries and depressing thoughts started to build and build into an oppressive weight on my shoulders. But yesterday people started praying for me, and I felt a peace with me throughout the day and by the evening the oppressive weight was lifted and we had a great night.
Caleb is doing really well. It is OBVIOUS the grace of God is on him. He is laughing, playing, a happy little guy. The nurses think he's adorable. And they are correct. There is such a huge improvement in his mood and of course that makes me relax. We have moved up to the Heart Center and this is where he'll be until he gets a heart. We had some great news yesterday... Medicaid is going to cover the transplant! His condition qualifies him as "disabled" and the Riley people worked their magic and got Medicaid to speed things up. Caleb should be able to be officially on the transplant list very soon.
We also had another great moment this morning... the Transplant Coordinator, Debbie, whom we now meet with a lot, talked to another couple whose son, Logan, is Caleb's age and just received a heart transplant in May. They were here today for a checkup and Debbie asked them if they would meet with us. It was wonderful. Their names are Justin and Holly and their kids are the same age as ours. Their little guy, Logan was amazing; he was running around the room, looked so strong and healthy and it made my heart swell with hopefulness that Caleb can have that energy someday too. Holly told me how before his transplant, Logan was tired and weak and never able to run or climb... just like Caleb. Within days, he had more energy than he'd ever had and now he looks like a normal little 2-year-old. Meeting them was so encouraging and I'm looking forward to getting to know them better.
Today is a day where it's just so apparent that people are praying for me. Your prayers keep me from being afraid and weary. God keeps giving me strength and endurance even when darkness tries to creep in and steal my joy. Keep the prayers coming- they really do make a difference in our life.
Prayer Requests for Today:
1- Pray that the listing process moves quickly and that Caleb can get on the transplant list right away
2- Pray for us to not get discouraged and lose hope
3- Pray for Jonah to feel secure even though his little life is so disrupted right now. Pray for us to find time to connect with him.
I'm wearing my Pray for Caleb bracelet proudly today and thinking of all the amazing friends who are supporting us and praying for us. We love you all! And thanks John Dugan for the great bracelet!
Caleb is doing really well. It is OBVIOUS the grace of God is on him. He is laughing, playing, a happy little guy. The nurses think he's adorable. And they are correct. There is such a huge improvement in his mood and of course that makes me relax. We have moved up to the Heart Center and this is where he'll be until he gets a heart. We had some great news yesterday... Medicaid is going to cover the transplant! His condition qualifies him as "disabled" and the Riley people worked their magic and got Medicaid to speed things up. Caleb should be able to be officially on the transplant list very soon.
We also had another great moment this morning... the Transplant Coordinator, Debbie, whom we now meet with a lot, talked to another couple whose son, Logan, is Caleb's age and just received a heart transplant in May. They were here today for a checkup and Debbie asked them if they would meet with us. It was wonderful. Their names are Justin and Holly and their kids are the same age as ours. Their little guy, Logan was amazing; he was running around the room, looked so strong and healthy and it made my heart swell with hopefulness that Caleb can have that energy someday too. Holly told me how before his transplant, Logan was tired and weak and never able to run or climb... just like Caleb. Within days, he had more energy than he'd ever had and now he looks like a normal little 2-year-old. Meeting them was so encouraging and I'm looking forward to getting to know them better.
Today is a day where it's just so apparent that people are praying for me. Your prayers keep me from being afraid and weary. God keeps giving me strength and endurance even when darkness tries to creep in and steal my joy. Keep the prayers coming- they really do make a difference in our life.
Prayer Requests for Today:
1- Pray that the listing process moves quickly and that Caleb can get on the transplant list right away
2- Pray for us to not get discouraged and lose hope
3- Pray for Jonah to feel secure even though his little life is so disrupted right now. Pray for us to find time to connect with him.
I'm wearing my Pray for Caleb bracelet proudly today and thinking of all the amazing friends who are supporting us and praying for us. We love you all! And thanks John Dugan for the great bracelet!
Tuesday, November 6, 2012
One day at a time
Every once in a while, Daniel and I stop and take a "thankfulness inventory". We take turns saying things we're thankful for that day. It is never hard to get a long list going, no matter how crappy or scary the day's circumstances have been. For example, last night we got into the Ronald McDonald House! We are able to stay there for the rest of the time Caleb is in the hospital, and it's really nice and only $15 a night. And Jonah is able to stay there too. That's one thing to be thankful for. The biggest thing to be thankful for today is that Caleb has had two stable days in a row. He is eating, talking, and even smiling! When the doctors came in for rounds today they were very pleased with how well he's recovered from his cardiac arrest last week. Thank God, there was no lasting damage to any of his body's systems.
Caleb is stable enough to move out of the intensive care unit and up to the Heart Center, where he will spend the rest of his time here while waiting for a new heart. We are very close to getting the approval from insurance and if all goes well, Caleb will officially be on the transplant list this week. Our life will consist of a lot of waiting and praying over the next weeks. We met with a member of the transplant team yesterday, a nurse named Debbie, who gave us some more information. Here at Riley, they do on average about 5 heart transplants a year. She said one child last year waited only a week for a new heart, and another waited 4 months. There's no way to know how long it will take. We are just so thankful that Caleb has stabilized to the point that he can get out of the ICU and can be in a much better room, where he will be able to get up and play some. That will be good for morale, because he definitely wants to get up and out of this little room.
We are encouraged, and it's wonderful to have some uneventful days, but we know there are many more challenges ahead. For now, we're enjoying some quiet time, some time to just be bored. Boring is good!
Things to pray for today:
1- Pray for Caleb's spirits to stay up. Pray for him to feel safe and secure, and to actually be able to laugh and play.
2- Pray for the insurance company to quickly approve us so we can get on the transplant list.
3- Pray for us to have wisdom to discern what to do with Jonah. Pray for us to have as much time as possible as a family.
We love you all and are forever grateful for your support!
Sunday, November 4, 2012
Ups and Downs
Good morning from Riley Children's Hospital... I am sitting next to a very precious little boy right now who just fell back asleep while watching Finding Nemo. It's really quiet in this room this morning so I thought I'd take a second to send out an update.
Yesterday was a day with extreme highs and lows. In the morning, Caleb was awake and talking after coming off the breathing tube the previous evening. We were so encouraged by that step, to see Caleb able to breathe on his own. I even got to hold him for the first time since Thursday and it was amazing. For a few hours, we felt almost blissful... until the middle of the afternoon. Caleb's oxygen level started dropping, and dropping, and wasn't going back up. Everyone rushed in and they put a bag on his face and tried to get his oxygen to come back up but it didn't for several minutes. The nurse was standing right there with the epinephrine while the flurry of doctors and respiratory team tried to get things back to normal. Fortunately, after about 10 minutes, he settled down and the numbers started going back up, but it was terrifying. We were so shaky and so was he- it really scared him to see everyone rush in, and of course for Dr. Raj to put the oxygen bag over his face. After that event, it was so hard to remember that only a couple hours before that, we were in great spirits. It just reminded us that even though Caleb is fairly stable, his heart is still incredibly sick and he needs a new one desperately.
The rest of the evening was uneventful, and Caleb went to sleep at about 8 and slept all night, 12 whole hours, so that was great. His oxygen steadily improved all evening and has been in the high 70's since then, which is really good. This morning, he actually looks better than he has in a couple weeks, which makes me realize just how sick he really was at home and we didn't even know it. His puffy face is totally back to normal and his lips are pinker. He looks like a different kid than he did on Wednesday night when we were trick-or-treating... I still can't stop thanking God that his heart didn't stop sooner.
Today will be another day of rest for Caleb. Tomorrow we will have a lot of meetings with doctors, insurance, and who knows who else to get Caleb on the transplant list as soon as possible. He should get listed quickly, and then the real waiting begins. In the meantime, we have to pray fervently that God would sustain his life until a new heart arrives. I had really hoped we could just coast until he gets a new heart, but yesterday he proved to us that he is still fighting for his little life. We have to choose, each day, to celebrate that day's successes and brace ourselves for the day's challenges.
Daniel and I are doing fairly well... we're tired of course, but we're glad we have each other to go through this together. The hardest part is the ups and downs; they are excruciating. We get great news, we get awful news, and back and forth. Just when we relax a little, he has an episode. Being here takes more patience and strength than I feel like I can muster sometimes, but it helps to just focus on one step at a time. At the end of each night, we're reading Scriptures over Caleb and praying for strength for the next day and for God to help us keep fear out of our minds. Each time we go to God asking for help, He has given it and we get glimpses of being refreshed and uplifted. We are actually sleeping at night, and eating when we can, and doing our best to take care of ourselves.
Here's what you can pray for specifically today:
1- for Caleb's sats (oxygen) to stay up
2- for Caleb to feel as comfortable and secure as possible
3- for our insurance company to agree to cover the transplant- which is the first step towards Caleb getting a heart
We send our love from inside our 12-foot-by-12-foot-hospital-room-home. I think it's safe to say that I'll be able to update this blog regularly so keep checking in!
Yesterday was a day with extreme highs and lows. In the morning, Caleb was awake and talking after coming off the breathing tube the previous evening. We were so encouraged by that step, to see Caleb able to breathe on his own. I even got to hold him for the first time since Thursday and it was amazing. For a few hours, we felt almost blissful... until the middle of the afternoon. Caleb's oxygen level started dropping, and dropping, and wasn't going back up. Everyone rushed in and they put a bag on his face and tried to get his oxygen to come back up but it didn't for several minutes. The nurse was standing right there with the epinephrine while the flurry of doctors and respiratory team tried to get things back to normal. Fortunately, after about 10 minutes, he settled down and the numbers started going back up, but it was terrifying. We were so shaky and so was he- it really scared him to see everyone rush in, and of course for Dr. Raj to put the oxygen bag over his face. After that event, it was so hard to remember that only a couple hours before that, we were in great spirits. It just reminded us that even though Caleb is fairly stable, his heart is still incredibly sick and he needs a new one desperately.
The rest of the evening was uneventful, and Caleb went to sleep at about 8 and slept all night, 12 whole hours, so that was great. His oxygen steadily improved all evening and has been in the high 70's since then, which is really good. This morning, he actually looks better than he has in a couple weeks, which makes me realize just how sick he really was at home and we didn't even know it. His puffy face is totally back to normal and his lips are pinker. He looks like a different kid than he did on Wednesday night when we were trick-or-treating... I still can't stop thanking God that his heart didn't stop sooner.
Today will be another day of rest for Caleb. Tomorrow we will have a lot of meetings with doctors, insurance, and who knows who else to get Caleb on the transplant list as soon as possible. He should get listed quickly, and then the real waiting begins. In the meantime, we have to pray fervently that God would sustain his life until a new heart arrives. I had really hoped we could just coast until he gets a new heart, but yesterday he proved to us that he is still fighting for his little life. We have to choose, each day, to celebrate that day's successes and brace ourselves for the day's challenges.
Daniel and I are doing fairly well... we're tired of course, but we're glad we have each other to go through this together. The hardest part is the ups and downs; they are excruciating. We get great news, we get awful news, and back and forth. Just when we relax a little, he has an episode. Being here takes more patience and strength than I feel like I can muster sometimes, but it helps to just focus on one step at a time. At the end of each night, we're reading Scriptures over Caleb and praying for strength for the next day and for God to help us keep fear out of our minds. Each time we go to God asking for help, He has given it and we get glimpses of being refreshed and uplifted. We are actually sleeping at night, and eating when we can, and doing our best to take care of ourselves.
Here's what you can pray for specifically today:
1- for Caleb's sats (oxygen) to stay up
2- for Caleb to feel as comfortable and secure as possible
3- for our insurance company to agree to cover the transplant- which is the first step towards Caleb getting a heart
We send our love from inside our 12-foot-by-12-foot-hospital-room-home. I think it's safe to say that I'll be able to update this blog regularly so keep checking in!
Friday, November 2, 2012
Well here we are...
It's probably about time I sent out a message to the outside world. Let me just tell you how indebted I feel to you all for your prayers, support, and encouragement. We feel your prayers, I assure you.
Yesterday was an intense and eventful day. Caleb was scheduled to have a heart cath yesterday morning, but when he got into the cath lab and started the anesthesia, he went into cardiac arrest. Fortunately, after 3 minutes they were able to revive him but of course everyone realized his heart is very weak and sick, more so than we knew. We are so thankful that he didn't go into cardiac arrest at home, or while we were out trick-or-treating... thank goodness it happened here, and now.
Over the course of the day, it became apparent to everyone that Caleb's heart was no longer even strong enough to consider more surgeries or repairs. The only real option for him is to have a new heart altogether. St Vincent's does not do heart transplants, so we've been moved to Riley Children's Hospital. Right now, Caleb simply has to recover from what happened yesterday; they also need to make sure no damage was done to his other systems. So far it looks like no permanent damage has been done but they'll be doing some tests to be sure of that. Caleb is very sick and weak but he is stable for now. The immediate goals for him are to be able to take out his breathing tube and see if he can breathe on his own. If that is successful, the next step is to stop his sedation and allow him to wake up. I am dreading that step. He has started to wake up a few times on his own and it's awful to see how scared and upset he gets, even in just a few short moments. I know it's a necessary step in his recovery, though, and we'll focus on that.
The process of getting a heart transplant is a huge ordeal. We met today with the transplant team for the first time and we were encouraged because we realize it's going to give Caleb another chance at life. However, it's a long process and we have to walk one step at a time. Caleb isn't even on the list yet but the process has begun and at the start of next week, we'll be moving forward. For now, the doctors are focused on letting him rest and recover for the weekend and working on the initial paperwork to get him on the transplant list. We will be moving in to the Ronald McDonald House here in the next few days and we will get to stay there for the duration of Caleb's time here.
This is a crazy time, and we are mostly just trying to keep going one step at a time. We are so thankful he is still alive and that right now it looks like there is hope that he could receive a transplant down the road. I know this update is succinct, but I at least wanted to give some basic details. We have moments of despair and moments of total peace and I think that's normal. The ups and downs are intense but we're really focusing on one day, maybe even one hour, at a time.
The support and love we feel from everyone is so amazing... it's keeping us going. Even in the worst moments, God has helped us to feel His presence. We are focusing on the things we have to be thankful for.
Things to pray for today:
1- that Caleb would be able to come off the breathing tube successfully
2- that Caleb would stay stable
3- that God would give us peace of mind to handle all the information we're receiving right now
Much love to you all from our family. We'll be more regular with updates soon, once we get settled in here.
Yesterday was an intense and eventful day. Caleb was scheduled to have a heart cath yesterday morning, but when he got into the cath lab and started the anesthesia, he went into cardiac arrest. Fortunately, after 3 minutes they were able to revive him but of course everyone realized his heart is very weak and sick, more so than we knew. We are so thankful that he didn't go into cardiac arrest at home, or while we were out trick-or-treating... thank goodness it happened here, and now.
Over the course of the day, it became apparent to everyone that Caleb's heart was no longer even strong enough to consider more surgeries or repairs. The only real option for him is to have a new heart altogether. St Vincent's does not do heart transplants, so we've been moved to Riley Children's Hospital. Right now, Caleb simply has to recover from what happened yesterday; they also need to make sure no damage was done to his other systems. So far it looks like no permanent damage has been done but they'll be doing some tests to be sure of that. Caleb is very sick and weak but he is stable for now. The immediate goals for him are to be able to take out his breathing tube and see if he can breathe on his own. If that is successful, the next step is to stop his sedation and allow him to wake up. I am dreading that step. He has started to wake up a few times on his own and it's awful to see how scared and upset he gets, even in just a few short moments. I know it's a necessary step in his recovery, though, and we'll focus on that.
The process of getting a heart transplant is a huge ordeal. We met today with the transplant team for the first time and we were encouraged because we realize it's going to give Caleb another chance at life. However, it's a long process and we have to walk one step at a time. Caleb isn't even on the list yet but the process has begun and at the start of next week, we'll be moving forward. For now, the doctors are focused on letting him rest and recover for the weekend and working on the initial paperwork to get him on the transplant list. We will be moving in to the Ronald McDonald House here in the next few days and we will get to stay there for the duration of Caleb's time here.
This is a crazy time, and we are mostly just trying to keep going one step at a time. We are so thankful he is still alive and that right now it looks like there is hope that he could receive a transplant down the road. I know this update is succinct, but I at least wanted to give some basic details. We have moments of despair and moments of total peace and I think that's normal. The ups and downs are intense but we're really focusing on one day, maybe even one hour, at a time.
The support and love we feel from everyone is so amazing... it's keeping us going. Even in the worst moments, God has helped us to feel His presence. We are focusing on the things we have to be thankful for.
Things to pray for today:
1- that Caleb would be able to come off the breathing tube successfully
2- that Caleb would stay stable
3- that God would give us peace of mind to handle all the information we're receiving right now
Much love to you all from our family. We'll be more regular with updates soon, once we get settled in here.
Tuesday, October 30, 2012
An Invitation
What a crazy life we have. Today I've found myself operating in "shock" mode and trying to snap out of it. I don't feel crushed by the weight of my worries... God is with us and I have peace in my heart, but I'm a little bit on emotion overload. Caleb is totally unaffected by what's going on around him... he is a cheerful little boy today and if you peeked in our windows and saw my boys running around in their p.j.'s and playing with their tractors, you would never guess that any kind of crisis exists.
As you know, Caleb went to see his cardiologist last week and there was huge concern from his doctors about how his heart has gotten weaker. That led them to schedule a heart catheterization on Thursday and an overnight stay at the hospital that night for him to recover. A heart cath on a little guy is a big deal. The results from the heart cath will determine the next steps. We are praying for a miracle.
What you probably don't know, and what I think I need to share so that you truly know how to pray for us right now, is that I have been experiencing health problems myself in the last month. Four years ago I was diagnosed with an autoimmune disease that is almost identical to rheumatoid arthritis. When I got pregnant with Caleb, the disease went into remission and has never returned. I believed that God chose to heal me of this, in light of the fact that only a few short weeks later, we found out about Caleb's heart defect. Unfortunately, the arthritis returned last month and it is worse than ever. Yesterday I sat at an appointment with my rheumatologist and she just looked at me with a face of almost disbelief and said, "I don't understand why all this would happen to one family." I told her that I never ask the question of "why" because it doesn't lead to anything fruitful. All I know is that life can be painful and disappointing and the only way we deal with it all is by believing in a God who loves us and who ultimately knows what is best for us.
I'm telling you this, not because I'm trying to steal Caleb's thunder, but because I want people to know just how big a mountain of struggle we are facing right now. Daniel and I have come to the point where we not only have no reservations asking for prayer, we are actually begging you to remember to pray for us right now. I want to see God display His power in a way that I've never witnessed with my own eyes, even though I read about His power and His miracles when I read my Bible. We are praying without ceasing, not just because we want Him to spare our family from all this pain, but because we believe with all our hearts that this is no coincidence. God wants to do something here. He wants to get our attention, and others' attention, and He wants to show up in a way that no one can know our story and deny that God is real.
Tonight Daniel and I and some friends are going to gather and pray and we want to invite you to join us. At 8:00 tonight at First Baptist, in the chapel, we are going to worship and pray and cry out to God to show up in power. If you feel led to come and join us, we'd love to have you. If you can't come in person but you want to join us in spirit, set an alarm on your phone and make a point to stop and pray at 8:00 tonight. We welcome anyone to come and join us tonight who believes we still worship a God of miracles and a God who listens to the cries of His people. Hopefully we'll see some of you tonight at First Baptist at 8:00! Park on the north side of the building and we'll be in the chapel. Let us know if you're coming... we can't wait to worship and pray with our brothers and sisters!
Friday, October 26, 2012
Difficult news
Oh, friends, we need your prayers. I was going to wait and post a prayer request after we got through Jonah's birthday week, but I can't wait that long because our need for prayer is urgent. For several days, Caleb has had a lot of swelling in his face and when we took him to the doctor, the initial guess was kidney problems. We were sent to St Vincents today to see his heart doctor first, followed by a kidney specialist. What they found is that his kidneys are fine, but his heart is not. His puffy face is caused by several problems going on with his heart and cardiovascular system and the problems are very serious. A heart catheterization has been scheduled for Thursday morning for Caleb and we will be spending the night there as the doctors determine the next steps. The doctor was sincerely concerned and said that this is not a matter of Caleb simply needing his next surgery sooner... the situation they found when doing his echocardiogram (ultrasound of his heart) is that the next surgery may not even help him. His heart has grown weaker. There are additional problems that didn't exist before, and previous problems have worsened. Today was the first day that Dr. Kumar put the idea of a heart transplant on the table and we have always known that is a last resort. But we have to have the heart cath first to see exactly what's going on. I knew things were serious when our cardiologist called Caleb's surgeon, and with another cardiologist, the three of them discussed what should happen next for a good 15 minutes before coming back into our room.
Of course we are trying our best not to let fear overcome us. As we drove home, it was difficult to know how we could get through the next 6 days. And tomorrow is Jonah's birthday party...
Tonight we are spending the evening at Daniel's parents house and have put a moratorium on "heart talk" until after Jonah's birthday party tomorrow. Please, if you are a person who prays, would you pray for us? We are keeping our feelings of desperation at bay and asking everyone we know to come around us and pray for healing for our little boy. We are determined to keep our eyes on Jesus, the only hope we've ever had, but our strength is limited. I will update again this weekend, thanks for your love and prayers.
Of course we are trying our best not to let fear overcome us. As we drove home, it was difficult to know how we could get through the next 6 days. And tomorrow is Jonah's birthday party...
Tonight we are spending the evening at Daniel's parents house and have put a moratorium on "heart talk" until after Jonah's birthday party tomorrow. Please, if you are a person who prays, would you pray for us? We are keeping our feelings of desperation at bay and asking everyone we know to come around us and pray for healing for our little boy. We are determined to keep our eyes on Jesus, the only hope we've ever had, but our strength is limited. I will update again this weekend, thanks for your love and prayers.
Sunday, October 21, 2012
Transparency
A friend of mine recently described being a mom like this: the days are long but the years are short. Somehow fall is rushing by and my sweet boys are getting bigger whether I want them to or not. Caleb is walking and talking and Jonah is turning 4 this week and I guess that's what happens when you have kids.
So I'm almost through my big transition of "stay-at-home mom" to "working mom" and it has been a whirlwind, to say the least. This routine is starting to feel normal, and I'm finally coming to terms with the fact that I don't win the award for Mom Who Can Do It All and Make It Look Easy. Working moms, I'm on to you. It's a total farce that women can work and be a mom and wife, and keep their house sparkling, and cook delicious, healthy meals and still have a social life, exercise and volunteer... unless you stop sleeping altogether. Or clone yourself. I'm learning that I just need to be ok with the state of my house. When I have the choice of building a fort with my boys or washing the dishes, I'm gonna choose the fort every time. Maybe this comes easier for some people. I'm super hard on myself and it's been rough for me. But it's settling down and we survived the first couple months and no one has suffered any catastrophe, unless you count almost having to wear a bathing suit for underwear when the laundry had piled up. (And I didn't even have to because I found some old underwear in the back of my drawer that hadn't fit since before Caleb was born. Victory all around!)
The last few weeks have reminded me more than ever why I'm committed to being a transparent person, especially as a follower of Jesus. I'll be honest, when people have asked me lately how I'm doing with my new job and routine, I have given the Super Mom answer sometimes ("It's great!") instead of being honest and saying that while I love my new job, and feel totally sure that this is what God has called me to do for this season of my life, I feel so overwhelmed sometimes. I want to say it's a breeze, because I want to be a strong woman in everyone's eyes, including my own. But God's been nudging me more and more when someone asks how I'm doing, reminding me how important it is to be truthful and real. And I know why that's so important... because nobody feels like they can admit to being weak when everybody else seems tough. I'm so not tough right now. I feel weaker than I've ever been. God keeps reminding me that it's when I am overwhelmed and weak that HIS strength is the most obvious. If I was capable of handling everything on my plate, what room is there for God to come in and do His thing? So it's been a great time for me, not because I'm seeing how strong and capable I am, but because I'm seeing how limited and weak I actually am. Thank you, Jesus. Thank you for helping me understand that it's so much better to be weak than to be strong. And help me to be an encouragement to my friends, to encourage them that we aren't the strong, competent people we want to be, but that we're really helpless without You. And that's a good thing. So be encouraged with me, fellow weaklings. Let's wear our weakness like a badge of honor, knowing that we are just pointing people to the ONE who is the Rock, our Strength and Shelter, Jesus!
Saturday, September 1, 2012
Ch-ch-ch-changes
If I was less computer-stupid, I would figure out a way to have that David Bowie song playing when you pull up this blog post. Instead you'll have to settle for a mental soundtrack. Yes, there are big changes happening in the world of Kinnaird. And no, I'm not pregnant. (Geez, can't a girl in her 30's have news other than that?!) But first, a Caleb update. Caleb had his first check-up in 4 months, after what we considered a really great summer for him. For once, I was headed to the hospital with high hopes for a good report. And I got one. Caleb is doing well! We have continued to periodically check his oxygen saturations at home and his numbers have been good (in the high 70's and low 80's) every single time since his last check-up in April. We haven't had a single scare or concern since his last doctor visit. PLUS he's finally starting to catch up developmentally... yay! At 17 months, Caleb took his first steps and at 19 months now, he's really starting to move. He's talking too and watching him grow into a full-on toddler is lots of fun. Today he actually said "thank you" when I gave him his juice. (Well, he said "deek-oo", but whatever.) These little milestones are fun for every parent, but for me, every new thing Caleb does makes me want to throw a party. There was certainly a time when I couldn't imagine him walking and talking and yet here we are. And since this last doctor's appointment, I've daydreamed about Caleb reaching milestones I've never even thought about... kindergarden, driver's license, college... these are brand new thoughts for me and I really do expect him to get there. Of course I say "expect him to get there" with the disclaimer that I hold Caleb with open hands to God and have no freaking clue where he'll "get to". But I do have stronger hope for Caleb than I've ever had, and I think it's actually realistic. Last week, the cardiologist was really pleased with Caleb's continued growth and development, and with how stable Caleb's cardiac health appears to be. So much so that we don't have to go back for 6 whole months and they fully expect his next open-heart surgery to be able to be put off until he's about 3 years old. That is wonderful news! The older he is, the better, for so many reasons. We left the doctor's office and worshipped God in the car on the way home. We also went through a Dunkin Donuts drive-through and let Caleb eat donut holes in the car. It looked like a bag of powdered sugar had exploded in our back seat, but we didn't care. We were singing worship songs at the top of our lungs and praising God for how good He is.
So Caleb's doing very well and meanwhile God is taking our family down a new path that will continue to require complete dependence on Him. I'm starting to think that's the way He likes it. After being at home full-time with my boys for almost 4 years, I've just started a new part-time job with a ministry called Cradles that works with teen parents. I'm the program coordinator and it's a great fit for me. The program provides high-quality and low-cost childcare to teens who are parents, so they can finish school. We also have a daily parenting and life skills class they come to for the last hour of school each day, for school credit. And of course the main focus of what we do is building relationships where we can love them, support them, and share Jesus with them. Daniel and I feel 100% sure that God is calling us as a family to minister to other young families and we are so excited to open our life up to them and see what He does. We know we have a lot to offer other families in crisis and can't wait to share the love and joy and hope that we have found in Jesus. Because you sure can't find it anywhere else.
We would love your prayers as we make this transition. So far, Jonah is thriving in the Cradles pre-school class (the kids can come with me when I'm there because we have a childcare facility), but Caleb is struggling. He only goes to Cradles 8 hours a week, between Daniel and Grandma Amy watching him the other times I work. But he's not happy about it so far. Pray for him and for us as we adjust to a new schedule and much more demands on me. We know that God wouldn't call us to do something that He won't provide for, but transitions are always stressful. Thanks for praying and supporting us in every season of our life.
Hope you've had a great summer too. And I hope you yourself know the hope and joy that we have found in Jesus.
So Caleb's doing very well and meanwhile God is taking our family down a new path that will continue to require complete dependence on Him. I'm starting to think that's the way He likes it. After being at home full-time with my boys for almost 4 years, I've just started a new part-time job with a ministry called Cradles that works with teen parents. I'm the program coordinator and it's a great fit for me. The program provides high-quality and low-cost childcare to teens who are parents, so they can finish school. We also have a daily parenting and life skills class they come to for the last hour of school each day, for school credit. And of course the main focus of what we do is building relationships where we can love them, support them, and share Jesus with them. Daniel and I feel 100% sure that God is calling us as a family to minister to other young families and we are so excited to open our life up to them and see what He does. We know we have a lot to offer other families in crisis and can't wait to share the love and joy and hope that we have found in Jesus. Because you sure can't find it anywhere else.
We would love your prayers as we make this transition. So far, Jonah is thriving in the Cradles pre-school class (the kids can come with me when I'm there because we have a childcare facility), but Caleb is struggling. He only goes to Cradles 8 hours a week, between Daniel and Grandma Amy watching him the other times I work. But he's not happy about it so far. Pray for him and for us as we adjust to a new schedule and much more demands on me. We know that God wouldn't call us to do something that He won't provide for, but transitions are always stressful. Thanks for praying and supporting us in every season of our life.
Hope you've had a great summer too. And I hope you yourself know the hope and joy that we have found in Jesus.
Thursday, July 5, 2012
"So... how is Caleb doing?"
At least once or twice a week, I run into someone at, say, Kroger who chats with me for a minute and then, seeing Caleb grinning and trying to climb out of the cart and take a box of cereal with him, cautiously says, "Well he looks healthy! He must be doing great... right?" People always say this while nodding their head and looking at me expectantly and I can't tell if they're trying to encourage me or encourage themselves. It actually means a lot every time someone asks and helps me feel like we're not alone and people really care... but I struggle between giving people the answer they probably want to hear standing in Kroger versus the real answer that lingers in our house on a daily basis. So how is Caleb doing? Well let me tell you the not-best-suited-for-Kroger answer. Caleb is doing really well right now. What that means is that we've had no unexpected events or changes in his health lately. He has actually had pretty good oxygen levels this summer, with his sats (oxygen saturation) in the high 70s to low 80s. He is often pretty blue, especially his lips and his hands and feet, and that's pretty typical for a kid with his heart condition because of his funky circulation. Developmentally, at 17 months he is just now starting to take his first steps and he's quickly making up for lost time. He crawls like a mad man, climbs on anything, and gets frustrated when you tell him, "Get down from that Caleb, you're not big enough to ride on the lawnmower", as if he defies your logic and will prove you wrong. The child has a generous dose of determination. In all other areas of development, he's a perfectly normal little guy. He's starting to talk, earlier than Jonah did, and his favorite word is "Cheeeeese", as in "take my picture, please". He's says "daddy" all the time and "mommy" only occasionally, just to show me that he will say whatever dang words he chooses.
You may be thinking, who wouldn't want to hear that? Well, because that's not the full answer. The full answer is, that's how Caleb is doing... right now. I realize that many people think because he's had surgery, his heart problem has been corrected. Actually, there is no "cure" or "fix" for Caleb's heart condition. As our cardiologist explains, everything we do for Caleb, medicine or surgery or whatever, we are trying to make his heart as strong as possible for as long as possible. And for how long that will be is completely unknown. The thing is, Caleb's heart has to work much harder than everyone else's does to pump blood. That extra work puts stress on his heart that, over time, can weaken it. At our last doctor's appointment, which was a positive one, Dr. Kumar said, "He's doing well right now, but of course after 5 or 10 years of his heart working this hard, we just don't know what shape it will be in". Ever since Caleb's last surgery, his heart has been weaker than before. The doctor calls this "diminished heart function", or heart failure. There's not much they can do for the heart to make it stronger. He is on medicine, but so far the medicine has made no difference. Fortunately, he only has a mild degree of heart failure, and we're really thankful for that. It does, however, change his long-term prognosis and put him at greater risk the older he gets. There's just no way of knowing how his heart will continue to hold up as he ages.
Caleb will have one more surgery sometime in 2013, probably next summer. This surgery will improve his oxygen level, but probably not his heart function. After that surgery, his heart will be as "fixed" as they can make it. So far, Caleb has done great for a heart baby. He's healthy, relatively speaking, and developing normally. His energy level is pretty good and he's happy and growing. What we're learning is to be excited for that and not really think ahead.
Why am I telling you all this? I promise it wasn't to bum you out. It's because I don't ask people to continue praying for us as much as I should. Trust me, I would rather just not think about his heart condition and unknown future, and so I assume nobody else wants to think about it either. But I know that's not true and that people want to know so they can support us and pray for us properly. I actually shared this stuff with some family last week who then said, "Oh my gosh, I didn't realize all that. Are you guys dealing with all this ok?" And the honest answer is yes! We really are learning how to live with this and feel like we're as normal as possible. Still, our hearts are permanently softened, and the simplest thing like seeing St Vincents' NeoNatal Ambulance flying down the highway makes us stop for a minute, shed a couple empathetic tears, acknowledge that pang in our hearts and then move on. We are forever changed, Daniel and me, into different people than we were two years ago. But honestly, the change in us has been really good. We are thankful and joyful over the smallest life experiences and that makes life a whole lot of fun, when you enjoy every little bit of it.
It would mean so much to have you continue to pray for us and encourage us. Yeah, we're pretty tough and we trust in Jesus, but we still live with the reality of a sick child on a daily basis. The love of our friends and family keeps us going at times, and today I'm letting you know we still need it. Thanks for walking with us through the crazy life God chose for our family!
You may be thinking, who wouldn't want to hear that? Well, because that's not the full answer. The full answer is, that's how Caleb is doing... right now. I realize that many people think because he's had surgery, his heart problem has been corrected. Actually, there is no "cure" or "fix" for Caleb's heart condition. As our cardiologist explains, everything we do for Caleb, medicine or surgery or whatever, we are trying to make his heart as strong as possible for as long as possible. And for how long that will be is completely unknown. The thing is, Caleb's heart has to work much harder than everyone else's does to pump blood. That extra work puts stress on his heart that, over time, can weaken it. At our last doctor's appointment, which was a positive one, Dr. Kumar said, "He's doing well right now, but of course after 5 or 10 years of his heart working this hard, we just don't know what shape it will be in". Ever since Caleb's last surgery, his heart has been weaker than before. The doctor calls this "diminished heart function", or heart failure. There's not much they can do for the heart to make it stronger. He is on medicine, but so far the medicine has made no difference. Fortunately, he only has a mild degree of heart failure, and we're really thankful for that. It does, however, change his long-term prognosis and put him at greater risk the older he gets. There's just no way of knowing how his heart will continue to hold up as he ages.
Caleb will have one more surgery sometime in 2013, probably next summer. This surgery will improve his oxygen level, but probably not his heart function. After that surgery, his heart will be as "fixed" as they can make it. So far, Caleb has done great for a heart baby. He's healthy, relatively speaking, and developing normally. His energy level is pretty good and he's happy and growing. What we're learning is to be excited for that and not really think ahead.
Why am I telling you all this? I promise it wasn't to bum you out. It's because I don't ask people to continue praying for us as much as I should. Trust me, I would rather just not think about his heart condition and unknown future, and so I assume nobody else wants to think about it either. But I know that's not true and that people want to know so they can support us and pray for us properly. I actually shared this stuff with some family last week who then said, "Oh my gosh, I didn't realize all that. Are you guys dealing with all this ok?" And the honest answer is yes! We really are learning how to live with this and feel like we're as normal as possible. Still, our hearts are permanently softened, and the simplest thing like seeing St Vincents' NeoNatal Ambulance flying down the highway makes us stop for a minute, shed a couple empathetic tears, acknowledge that pang in our hearts and then move on. We are forever changed, Daniel and me, into different people than we were two years ago. But honestly, the change in us has been really good. We are thankful and joyful over the smallest life experiences and that makes life a whole lot of fun, when you enjoy every little bit of it.
It would mean so much to have you continue to pray for us and encourage us. Yeah, we're pretty tough and we trust in Jesus, but we still live with the reality of a sick child on a daily basis. The love of our friends and family keeps us going at times, and today I'm letting you know we still need it. Thanks for walking with us through the crazy life God chose for our family!
Sunday, May 27, 2012
No place like home, but mountains are nice, too
If living in Africa did one thing in my character, it was to make me into a thankful person. One thing in my life I will NEVER take for granted is my bed, and every time I travel and then I come home and crawl into my bed, I say a prayer of thanks that I have such a comfortable place to sleep. It's a simple thing to be thankful for, and if you've slept in some of the places in the world I've slept, you know what I mean. I seriously love to travel, but there's something so great about coming home again. We've been traveling quite a bit this past month. It's been a month of some big-time spiritual refreshing for me and a month of awesome bonding time with my family too. Wow, just writing that sentence made me overflow with thankfulness again. What a good May I've had. Thanks, God... these are great blessings.
The first week of May, Daniel and I went to Costa Rica for 6 days for a missions conference with International Teams, the missions org that Daniel works for. God really took that time to speak to me about my life, and to encourage and refresh me personally. I have been growing closer and closer to Jesus in the last year and one thing He has been saying to me over and over is that He wants more of my attention. And the more I give Him, the more change I see in myself. While I was in Costa Rica, God really laid it on my heart to get more serious about how I spend my time. As I prayed about that, I decided to designate the weekdays as "no media" days... meaning that Monday through Friday, I don't watch tv or movies or get on the internet. I leave that stuff for the weekend only. It's amazing what cutting entertainment out of my schedule for most of the week has freed me up to do! I am spending more time praying, more time reading my Bible, more time just talking with my husband. It's so good! The closer I get to Jesus, the less I care about other stuff anyway.
Not only has there been a strengthening of my relationship with God lately, there's been a lot of great relationship-building with my family. Daniel and I just celebrated our 8th wedding anniversary and I am more committed to him than I have ever been. God has given me such a gift in my marriage. And in my kids! Last week, the four of us took our first family vacation. We went to the Smoky Mountains and stayed in a cabin for a week, hiking, exploring, playing outside all day in the mountains. It was amazing. Not easy, particularly, but amazing and such a blast. Traveling with a 1-year-old and a 3-year-old is an art form that I'm still mastering, but it was totally worth the extra effort.
My boys are really growing up. I noticed it so many times this week. Jonah was so tough on the trails, hiking several miles and loving every minute of it. He usually wanted to be the leader, and he routinely would stop, turn around and say in his deep little voice, "Everybody ok back there?", like he was the one looking out for us all. What a little man. And Caleb... he's getting so big. He LOVES to ride in the pack on Daniel's back and he is already a little hiker in the making, I just know it. He's not a baby anymore, he's becoming a little boy. When we'd pass people on the trails, people all the time commented on how great it was that our boys loved to hike and how cute they were... I'm sure not one of them would have guessed Caleb's story. He looks and acts so healthy! I'm so thankful for that. He's doing well, he looks good and is getting so close to walking and talking. And I'm really starting to let myself dream about him getting bigger and the things our family is still going to do. I haven't always done that, but God has been giving me the encouragement to dream about our future again. And it feels good to dream, even while I'm learning that there are no certainties. I think I can do both; I can be hopeful for our future, and at the same time know that whatever life brings, I will trust that God's plans are good.
The first week of May, Daniel and I went to Costa Rica for 6 days for a missions conference with International Teams, the missions org that Daniel works for. God really took that time to speak to me about my life, and to encourage and refresh me personally. I have been growing closer and closer to Jesus in the last year and one thing He has been saying to me over and over is that He wants more of my attention. And the more I give Him, the more change I see in myself. While I was in Costa Rica, God really laid it on my heart to get more serious about how I spend my time. As I prayed about that, I decided to designate the weekdays as "no media" days... meaning that Monday through Friday, I don't watch tv or movies or get on the internet. I leave that stuff for the weekend only. It's amazing what cutting entertainment out of my schedule for most of the week has freed me up to do! I am spending more time praying, more time reading my Bible, more time just talking with my husband. It's so good! The closer I get to Jesus, the less I care about other stuff anyway.
Not only has there been a strengthening of my relationship with God lately, there's been a lot of great relationship-building with my family. Daniel and I just celebrated our 8th wedding anniversary and I am more committed to him than I have ever been. God has given me such a gift in my marriage. And in my kids! Last week, the four of us took our first family vacation. We went to the Smoky Mountains and stayed in a cabin for a week, hiking, exploring, playing outside all day in the mountains. It was amazing. Not easy, particularly, but amazing and such a blast. Traveling with a 1-year-old and a 3-year-old is an art form that I'm still mastering, but it was totally worth the extra effort.
My boys are really growing up. I noticed it so many times this week. Jonah was so tough on the trails, hiking several miles and loving every minute of it. He usually wanted to be the leader, and he routinely would stop, turn around and say in his deep little voice, "Everybody ok back there?", like he was the one looking out for us all. What a little man. And Caleb... he's getting so big. He LOVES to ride in the pack on Daniel's back and he is already a little hiker in the making, I just know it. He's not a baby anymore, he's becoming a little boy. When we'd pass people on the trails, people all the time commented on how great it was that our boys loved to hike and how cute they were... I'm sure not one of them would have guessed Caleb's story. He looks and acts so healthy! I'm so thankful for that. He's doing well, he looks good and is getting so close to walking and talking. And I'm really starting to let myself dream about him getting bigger and the things our family is still going to do. I haven't always done that, but God has been giving me the encouragement to dream about our future again. And it feels good to dream, even while I'm learning that there are no certainties. I think I can do both; I can be hopeful for our future, and at the same time know that whatever life brings, I will trust that God's plans are good.
Friday, April 13, 2012
Nothing new under the sun
I wanted to post a quick update from today's doctor's appointment: it was a good appointment. There have been no changes with Caleb's health, and that's always good news. Dr. Kumar had no concerns and said that Caleb was stable. His sats are in the mid 70's and that is satisfactory. The best part is we don't have to go back for 4 whole months, which is the longest we've ever gone without seeing a cardiologist! That's always a good sign, when we have a break from doctors. Thank you so much for praying with us today for Caleb. It means the world.
I actually had a good conversation with Dr. Kumar today, a conversation about Caleb's future and the possibilities we face. He didn't really give me any new information, but it was still helpful to talk about how hard it is not knowing what his future holds. I have been trying to process some stuff today and I want to write about it, but I have to think some more before I share. One interesting thing that came from the conversation was my realization of the huge need there is for families like us to find support and connections with people who understand what it's like to have a child with serious, ongoing medical issues. I've actually thought about this a lot throughout our journey with Caleb, and today on the way home I told Daniel that I'm going to pray more about what God would have me do. I want to see families like ours connected with other families struggling in similar ways, to feel like we're in it together and have a sense of community. Hmm... interesting ideas are floating around in my head.
Thanks again for your prayers. Another blog coming soon filled with what is sure to be some pointless ramblings and at least one funny poop story. I'm always good for some of those. Oh, and here's a picture of my family on Easter, which includes Jonah in a sweater vest and Caleb in a tie (i.e., more cuteness than I can handle).
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