As I write this, it has been exactly a week since Madelyn's surgery. What a week. But we're home now and it feels sooo good. Honestly, I can barely remember a week ago and everything that went on. Looking through our pictures brings some of it back, but the days all blend together. Obviously there will always be reminders of that weekend: Maddie's scar, not being able to pick her up under her arms for six weeks, and the pictures. In terms of healing, she's doing great. We're only giving her pain meds when she needs them, which is usually a couple of times a day. The poor girl woke up yesterday with the hiccups, which is one of the most painful things for her right now. But then to calm her down enough to take the Advil is quite the job. Thankfully Rus still had yesterday off, but today I'm flying solo.
I don't think the past week has fully sunk in yet, but I do feel as though a HUGE weight has been lifted. I'm no longer constantly checking to make sure she's breathing. There's no more tightening up every time the phone rings wondering if this will be the call with the surgery date. The bandages are off, the stitches are out, all that's left is a followup appointment in a month. Our little girl is happy and healthy.
Maddie's development hasn't seemed to stop in the last week either; she's smiling way more than she did a week ago, and she's still super active. She lost half a pound in the hospital but seems to be gaining it back quickly.
My dad told me yesterday about another couple who are expecting and their baby also has heart issues. I wanted to cry. All the emotions came flooding back. I wouldn't wish this stress and fear on anyone. Even though we're on this side of the surgery, I still remember what it's like waiting and wondering what will happen. Please pray for them.
My heart feels very full. I am so incredibly thankful for all the support everyone has given us; we couldn't have made it through without all your prayers. THANK YOU!! A big thank you also goes out to those who came to visit us in Edmonton. You made our stay out there much more comfortable. Jared and D, thanks for driving all that way with two little kids!
I think I'm addicted to writing again, so if you want, keep checking back here for new stories about Maddie. I'm sure she'll give me lots of writing material in the years to come!
Wednesday, July 29, 2009
Friday, July 24, 2009
Guess What!!
As I'm typing this, Maddie is lying beside me on our hotel bed! That's right, we got to take her with us this afternoon! No more hospitals and monitors and random beeping... It feels so good to have it all done. And she's so happy! You'd never know she just had open heart surgery, she's moving around and smiling just as much as ever. We just have to be careful how we lift her for 6 weeks until the bone heals. And she's off all meds, except Tylenol when she needs it. So far she doesn't seem to be in pain, but when she gets the hiccups you can tell it hurts a bit.
I could cry again, but this time because I'm sooo happy. My baby is home, all the wires are gone, and we can finally move on. There's only one more appointment with the cardiologist on Monday and one more with our family doctor to make sure she's healing well. I feel like a giant weight has been lifted off of me, if I was the dancing type I'd be dancing.
Yesterday, in the same ward we were in, they were prepping a boy for a heart transplant. I'd guess he's in grade 3 or 4. And the question 'why us' struck me again. But this time it was wondering why we were able to have this dealt with so quickly and why she was healthy. Not that I'm complaining, but we were surrounded by kids who had so many issues and are hospitalized for months. It's a tough question, one I don't have an answer to. But I guess that's part of life. And in the inconsistencies of life, I'm so glad I can depend on a God who's constant and doesn't play favorites. I found myself praying for other kids a lot this week. There's still a lot to sort through in my mind.
I could cry again, but this time because I'm sooo happy. My baby is home, all the wires are gone, and we can finally move on. There's only one more appointment with the cardiologist on Monday and one more with our family doctor to make sure she's healing well. I feel like a giant weight has been lifted off of me, if I was the dancing type I'd be dancing.
Yesterday, in the same ward we were in, they were prepping a boy for a heart transplant. I'd guess he's in grade 3 or 4. And the question 'why us' struck me again. But this time it was wondering why we were able to have this dealt with so quickly and why she was healthy. Not that I'm complaining, but we were surrounded by kids who had so many issues and are hospitalized for months. It's a tough question, one I don't have an answer to. But I guess that's part of life. And in the inconsistencies of life, I'm so glad I can depend on a God who's constant and doesn't play favorites. I found myself praying for other kids a lot this week. There's still a lot to sort through in my mind.
Thursday, July 23, 2009
Kicks and Smiles
I honestly can't believe it's only Thursday. This feels like a never ending week! And her surgery already feels like it was ages ago, when in reality it's only been about 50 hours since it was finished.
Last night was rough on me. I know she's made a ton of progress, but yesterday she was still so drugged and not herself yet. I found myself needing to pray for patience; it had only been a day since she had open heart surgery, obviously it takes time to heal! For some reason I had pictured her to look different after the surgery; maybe smaller and weaker, but she still looked the same. It's hard not to set my expectations too high and remember that her little body still needs to recover from this. I went back to the hotel early, listened to praise and worship music, and just cried. Not for anything in particular, but mostly to get out all the emotions from the week. Everyone so far has told us she's doing great, but I wanted my little Maddie back.
Well this morning when we got to the hospital, her face lit up and she smiled! They had taken out the three chest tubes before we arrived, and she was on very little morphine. Shortly after we got there a nurse also took out the pace maker wire (they insert it just in case). So because those wires and tubes were all out, no more morphine! She's still obviously on pain killers, but nothing that strong.
And we got to hold her for the first time! We could have held her yesterday already but the chest tube causes a lot of discomfort, so we decided to wait. It felt so amazing to hold her again, and she snuggled right in like we've never put her down. It's a bit awkward because she still has some wires stuck to her (to monitor her heartbeat), but we're getting used to it.
She's now in the cardiac ward and we're able to do more for her and feel like parents again. If we're gone, we know the nurses will take care of everything, but when we're there, we get to feed her, change her diapers, and hold her as much as we want. I honestly didn't think I would be so excited to change a diaper again! And she's so happy. I had pictured her being restrained because she moves so much and could easily tear out wires etc, but she hasn't been held back! She moves around easily as much as ever, and seems to have no idea that she's just had major surgery. I'm so thankful she won't remember any of this! We've taken lots of pictures and plan to make an album to explain why she has a scar on her chest.
A lot of people have said that it's too bad she'll have a scar, but honestly, I'm hoping that scar will be a constant reminder of the work God has done here, and how amazing he is. A scar is just that, a scar, not a wound or something damaging. It's a symbol of what has happened, and it will remind me to put Madelyn's life in God's hands because he is always going to hold on to her.
God has been so good to us through this whole week. I'm still amazed we've been able to sleep so well. This week has had quite a few highs and lows, but prayer is such a powerful tool for handling everything.
We're hearing that we'll probably be able to go home this weekend, but we don't have a date yet. Once Madelyn is discharged we still need to wait for the Variety Heart Center in Winnipeg to arrange our flight home, so it might only be Sunday or Monday.
Thanks again so much for all your prayers!
Last night was rough on me. I know she's made a ton of progress, but yesterday she was still so drugged and not herself yet. I found myself needing to pray for patience; it had only been a day since she had open heart surgery, obviously it takes time to heal! For some reason I had pictured her to look different after the surgery; maybe smaller and weaker, but she still looked the same. It's hard not to set my expectations too high and remember that her little body still needs to recover from this. I went back to the hotel early, listened to praise and worship music, and just cried. Not for anything in particular, but mostly to get out all the emotions from the week. Everyone so far has told us she's doing great, but I wanted my little Maddie back.
Well this morning when we got to the hospital, her face lit up and she smiled! They had taken out the three chest tubes before we arrived, and she was on very little morphine. Shortly after we got there a nurse also took out the pace maker wire (they insert it just in case). So because those wires and tubes were all out, no more morphine! She's still obviously on pain killers, but nothing that strong.
And we got to hold her for the first time! We could have held her yesterday already but the chest tube causes a lot of discomfort, so we decided to wait. It felt so amazing to hold her again, and she snuggled right in like we've never put her down. It's a bit awkward because she still has some wires stuck to her (to monitor her heartbeat), but we're getting used to it.
She's now in the cardiac ward and we're able to do more for her and feel like parents again. If we're gone, we know the nurses will take care of everything, but when we're there, we get to feed her, change her diapers, and hold her as much as we want. I honestly didn't think I would be so excited to change a diaper again! And she's so happy. I had pictured her being restrained because she moves so much and could easily tear out wires etc, but she hasn't been held back! She moves around easily as much as ever, and seems to have no idea that she's just had major surgery. I'm so thankful she won't remember any of this! We've taken lots of pictures and plan to make an album to explain why she has a scar on her chest.
A lot of people have said that it's too bad she'll have a scar, but honestly, I'm hoping that scar will be a constant reminder of the work God has done here, and how amazing he is. A scar is just that, a scar, not a wound or something damaging. It's a symbol of what has happened, and it will remind me to put Madelyn's life in God's hands because he is always going to hold on to her.
God has been so good to us through this whole week. I'm still amazed we've been able to sleep so well. This week has had quite a few highs and lows, but prayer is such a powerful tool for handling everything.
We're hearing that we'll probably be able to go home this weekend, but we don't have a date yet. Once Madelyn is discharged we still need to wait for the Variety Heart Center in Winnipeg to arrange our flight home, so it might only be Sunday or Monday.
Thanks again so much for all your prayers!
Wednesday, July 22, 2009
No More ICU!
So as of an hour ago, Maddie is no longer in the PICU! She's doing so well and is so stable that she doesn't have to be monitored so closely. Obviously they're still watching her carefully, but she's out of the danger zone (insert pictures of Tom Cruise from Top Gun here!). Right now they're trying to cut back her morphine and give her better drugs like Tylenol and Advil. She's slowly waking up every once in a while. We can tell that she recognizes us because her eyes get really wide, but she's still pretty stoned. I can't wait to see her smile again!
And slowly the tubes are coming out. She no longer has an intravenous in one of her hands or her neck, and she isn't needing extra oxygen either. Yay God! She's looking more and more like herself again.
Rus and I took a break this afternoon and went for a long walk. It felt so good to get out of the hospital and away from all kinds of beeping machines and weird smells. Thanks mom for the Second Cup gift card! We made good use of it this afternoon. Iced White Mocha...mmm.
Rus is thrilled with Maddie's new room because it has a large window with a view of a construction site. Pretty sure he won't be bored there! I'm just thankful there's a window that lets in some sunshine!
We are doing well. We've slept great this week, and we feel so much support from everyone. Our social worker said she mentioned us to another family who's child is having heart surgery. We've been making a big effort to not get overwhelmed and to take care of ourselves so we can be there for Maddie, and this so impressed the social worker that she told them about us! Though it is easier to get rest when we know Madelyn is doing well and has great nurses looking after her.
Speaking of Madelyn, I should get back there. Thanks again so much for all your prayers.
And slowly the tubes are coming out. She no longer has an intravenous in one of her hands or her neck, and she isn't needing extra oxygen either. Yay God! She's looking more and more like herself again.
Rus and I took a break this afternoon and went for a long walk. It felt so good to get out of the hospital and away from all kinds of beeping machines and weird smells. Thanks mom for the Second Cup gift card! We made good use of it this afternoon. Iced White Mocha...mmm.
Rus is thrilled with Maddie's new room because it has a large window with a view of a construction site. Pretty sure he won't be bored there! I'm just thankful there's a window that lets in some sunshine!
We are doing well. We've slept great this week, and we feel so much support from everyone. Our social worker said she mentioned us to another family who's child is having heart surgery. We've been making a big effort to not get overwhelmed and to take care of ourselves so we can be there for Maddie, and this so impressed the social worker that she told them about us! Though it is easier to get rest when we know Madelyn is doing well and has great nurses looking after her.
Speaking of Madelyn, I should get back there. Thanks again so much for all your prayers.
Tuesday, July 21, 2009
so where to start first of all if the this entry is crude and less eloquent than all the other it's not Bonnie that is writing this so don't assume that stress has messed with Bonnie's great writing ability
today I must say was a roller coaster waking up and getting Madelyn ready for surgery seeing her smile and grin at us was quite a reminder of trust she had in us and how our heavenly father cares even more for us than I can ever care for Madelyn. Leaving her in the hands of a young nurse who whisked her off to the operating table was almost more than Bonnie or I could handle but thank God for comfort and strength in times like this.
During the surgery I must say I felt guilty for not really feeling stressed the combination of the last couple of days of stress and business, peace kept us both pretty relaxed while waiting for the moment when the surgeon gently walked over and told us that our precious little Maddie had handled the surgery like a true trooper. How Awesome is that!!!!!
Seeing her roll past our waiting area and seeing her peace out on her stretcher was somewhat awkward since there were like ten people just standing there who for them is an everyday occurrence
The afternoon was a combination of feeling bored, helpless, or unuseful just watching her rubbing her head and left leg since it felt like every other part of her body had hoses or wires connected to it.
After supper we came back and she was more awake the nurses removed her breathing tube which was causing Madelyn much discomfort
I can't really describe the time following this for those of you who have met Madelyn know she has a healthy set of lungs
well you they didn't sound so healthy after this. Her throat was sore and her face was screaming but her cry just barely made it to our ears. Don't be mistaken everything about her body language was shouting I hurt all over Daddy I hurt all over
all I could do was hold Maddie's little head and talk gently in her ear comfort her and look helplessly over to the nurse who was doing her best to communicate to the Doctors that our little baby NEEDS more pain med.s the slightest bump of her bed set her off kicking and trying to cry which brought her more pain and discomfort
finally she got a higher dosage of Morphine which help her to sleep
later on when we went to see her she was resting peacefully and the Doctor reassured us she is the healthiest patient in the ward and that they plan to bottle feed her tonight some time and promote her to the next level up tomorrow morning
thank God for Uncle Don and Aunt Shirley who took us out for dessert and a break this evening when things were so intense a much needed moment of care for both Bonnie and myself
We thank God for all the blessing we have experienced today and the lessons he has taught us of Himself and trusting in Him
good night to you all
today I must say was a roller coaster waking up and getting Madelyn ready for surgery seeing her smile and grin at us was quite a reminder of trust she had in us and how our heavenly father cares even more for us than I can ever care for Madelyn. Leaving her in the hands of a young nurse who whisked her off to the operating table was almost more than Bonnie or I could handle but thank God for comfort and strength in times like this.
During the surgery I must say I felt guilty for not really feeling stressed the combination of the last couple of days of stress and business, peace kept us both pretty relaxed while waiting for the moment when the surgeon gently walked over and told us that our precious little Maddie had handled the surgery like a true trooper. How Awesome is that!!!!!
Seeing her roll past our waiting area and seeing her peace out on her stretcher was somewhat awkward since there were like ten people just standing there who for them is an everyday occurrence
The afternoon was a combination of feeling bored, helpless, or unuseful just watching her rubbing her head and left leg since it felt like every other part of her body had hoses or wires connected to it.
After supper we came back and she was more awake the nurses removed her breathing tube which was causing Madelyn much discomfort
I can't really describe the time following this for those of you who have met Madelyn know she has a healthy set of lungs
well you they didn't sound so healthy after this. Her throat was sore and her face was screaming but her cry just barely made it to our ears. Don't be mistaken everything about her body language was shouting I hurt all over Daddy I hurt all over
all I could do was hold Maddie's little head and talk gently in her ear comfort her and look helplessly over to the nurse who was doing her best to communicate to the Doctors that our little baby NEEDS more pain med.s the slightest bump of her bed set her off kicking and trying to cry which brought her more pain and discomfort
finally she got a higher dosage of Morphine which help her to sleep
later on when we went to see her she was resting peacefully and the Doctor reassured us she is the healthiest patient in the ward and that they plan to bottle feed her tonight some time and promote her to the next level up tomorrow morning
thank God for Uncle Don and Aunt Shirley who took us out for dessert and a break this evening when things were so intense a much needed moment of care for both Bonnie and myself
We thank God for all the blessing we have experienced today and the lessons he has taught us of Himself and trusting in Him
good night to you all
what a day we've had...
Where do I start? First of all, the surgery went great. Madelyn is a tough little girl. Our day started at six this morning, and who knows when it'll end. Giving Maddie over to the doctors this morning was the hardest thing I've ever had to do, but we knew she was in good hands.
Because the surgery was so early, we were pretty tired. I managed to sleep for an hour and a half once we got back to the hotel, and Rus read for a while. Then we went out for breakfast. We got back to the hotel around 10:15 and by 10:45 we had already talked to the surgeon and learned how everything had gone.
So the surgery... Dr. Quinonez said it was wonderful to work on a normal heart; I guess because he specializes in heart surgeries he has seen all kinds. And as of right now, this growth is not a growth. Rus understands all this way better than me, but I'll do my best to explain. While babies are still in the womb they have an extra valve in their heart that pumps the mother's blood to their heart, instead of going through their lungs as it does when they're born. Are you following so far? Anyways, this valve usually disappears very early, but Maddie still had part of hers attached to the wall of her heart when they did the 20 week ultrasound. They don't know where this valve goes, or how it disappears; but they do have a fancy word to describe the process (but I can't remember what it is!). So the good news is that there's no chance of anything growing back. It's also not a genetic malfunction so our next ten kids' hearts should develop normally.
Right now she's in the PICU and is hooked up to a lot of machines and tubes. It's so hard to watch her sort of wake up and try to cry, but can't because she has a breathing tube in. The nurses and doctors have all said she's recovering really well.
Pray: that Maddie will continue to recover well.
Pray: that Rus and I will continue to have peace about this whole scenario, especially as we watch her monitor and see numbers changing and don't know what they mean.
Pray: that we can continue to rest.
Praise: we slept amazingly well last night!
Praise: I was so worried about Madelyn being upset this morning because she wasn't supposed to eat. Well she slept later than I thought she would, and started fussing a bit while we were waiting for them to come take her. Praise God for Cindy, the nurse who came and rocked her back to sleep. How many babies have you met that will willingly fall asleep without eating breakfast? She has never ever done that. And it's not like she cried so much that she exhausted herself... Totally a God moment. Thanks so much for praying specifically for that!
Praise: That the surgery went so well and they think they've solved the mystery in Maddie's heart.
Because the surgery was so early, we were pretty tired. I managed to sleep for an hour and a half once we got back to the hotel, and Rus read for a while. Then we went out for breakfast. We got back to the hotel around 10:15 and by 10:45 we had already talked to the surgeon and learned how everything had gone.
So the surgery... Dr. Quinonez said it was wonderful to work on a normal heart; I guess because he specializes in heart surgeries he has seen all kinds. And as of right now, this growth is not a growth. Rus understands all this way better than me, but I'll do my best to explain. While babies are still in the womb they have an extra valve in their heart that pumps the mother's blood to their heart, instead of going through their lungs as it does when they're born. Are you following so far? Anyways, this valve usually disappears very early, but Maddie still had part of hers attached to the wall of her heart when they did the 20 week ultrasound. They don't know where this valve goes, or how it disappears; but they do have a fancy word to describe the process (but I can't remember what it is!). So the good news is that there's no chance of anything growing back. It's also not a genetic malfunction so our next ten kids' hearts should develop normally.
Right now she's in the PICU and is hooked up to a lot of machines and tubes. It's so hard to watch her sort of wake up and try to cry, but can't because she has a breathing tube in. The nurses and doctors have all said she's recovering really well.
Pray: that Maddie will continue to recover well.
Pray: that Rus and I will continue to have peace about this whole scenario, especially as we watch her monitor and see numbers changing and don't know what they mean.
Pray: that we can continue to rest.
Praise: we slept amazingly well last night!
Praise: I was so worried about Madelyn being upset this morning because she wasn't supposed to eat. Well she slept later than I thought she would, and started fussing a bit while we were waiting for them to come take her. Praise God for Cindy, the nurse who came and rocked her back to sleep. How many babies have you met that will willingly fall asleep without eating breakfast? She has never ever done that. And it's not like she cried so much that she exhausted herself... Totally a God moment. Thanks so much for praying specifically for that!
Praise: That the surgery went so well and they think they've solved the mystery in Maddie's heart.
Monday, July 20, 2009
PAC
Unfortunately PAC isn't short for PacMan, but I wish it was. PAC, or, PreAdmission Clinic, is what we did with our day. It started at 7am, and for those who know me, mornings aren't so hot. But Maddie was thrilled we were both up to play with her; she is such a morning girl. We spent the day talking to the surgeon (Dr. Quinonez), the anesthesiologist, the social worker, many nurses, and getting a tour of the PICU. Maddie also had blood work done (didn't cry at all), a chest xray (screamed through the whole thing), and an echo cardiogram (slept through most of it). From her behavior you'd never know her schedule was thrown off today, but Rus and I were tired. We all just woke up from naps.
The hospital is beautiful. Everything is new and nicely designed and painted and so easy to find. It also doesn't have that sterile hospital smell that lingers when you leave. Everyone has been super friendly and we've had plenty of time to ask questions.
The surgery is scheduled for 7:20am tomorrow, so we've gotta be at the hospital at 6. Dr. Quinonez estimated that the surgery will last around 4 hours, so we should be able to see her again by lunch. As far as he's concerned, this is a very routine surgery. He does on average two heart surgeries a day, but he has yet to see a growth like this in a baby's heart. In fact, this growth has all the cardiologists and surgeons here stumped, but hopefully the biopsy gives some answers.
Pray: that feeding will not be an issue tomorrow morning. Maddie usually only has two hours between feedings, but her last one has to be at least three hours before the surgery. We're hoping to wake her up in the night to feed and then she'll sleep till we hand her over to the doctors.
Pray: for rest tonight, we've got a long day ahead of us tomorrow.
Pray: for her surgery
Pray: that we will be able to share our hope in God with someone. We so badly want this experience to glorify Him.
Praise: today went so well! And Maddie is healthy enough to have the surgery tomorrow.
Praise: For the countless times we've been told that people are praying for us. You have no idea how much it means to us to be uplifted so often in prayer. Thank You!!
Praise: that in this hotel if you leave dishes on the counter the maid washes them! We had planned on doing them after all the appointments today, but when we got back they were washed and sitting nicely beside the sink. It may sound trivial, but we were excited.
The hospital is beautiful. Everything is new and nicely designed and painted and so easy to find. It also doesn't have that sterile hospital smell that lingers when you leave. Everyone has been super friendly and we've had plenty of time to ask questions.
The surgery is scheduled for 7:20am tomorrow, so we've gotta be at the hospital at 6. Dr. Quinonez estimated that the surgery will last around 4 hours, so we should be able to see her again by lunch. As far as he's concerned, this is a very routine surgery. He does on average two heart surgeries a day, but he has yet to see a growth like this in a baby's heart. In fact, this growth has all the cardiologists and surgeons here stumped, but hopefully the biopsy gives some answers.
Pray: that feeding will not be an issue tomorrow morning. Maddie usually only has two hours between feedings, but her last one has to be at least three hours before the surgery. We're hoping to wake her up in the night to feed and then she'll sleep till we hand her over to the doctors.
Pray: for rest tonight, we've got a long day ahead of us tomorrow.
Pray: for her surgery
Pray: that we will be able to share our hope in God with someone. We so badly want this experience to glorify Him.
Praise: today went so well! And Maddie is healthy enough to have the surgery tomorrow.
Praise: For the countless times we've been told that people are praying for us. You have no idea how much it means to us to be uplifted so often in prayer. Thank You!!
Praise: that in this hotel if you leave dishes on the counter the maid washes them! We had planned on doing them after all the appointments today, but when we got back they were washed and sitting nicely beside the sink. It may sound trivial, but we were excited.
Sunday, July 19, 2009
Edmonton!
Well, we made it. I was pretty worried about Maddie flying, but she was a pro! She slept through both the takeoff and landing, and only fussed in between when she had a dirty diaper. Ever tried changing a diaper in an airplane bathroom? Quite the adventure. There was another baby on the plane and I must proudly say that Madelyn handled it better, but there's always the flight home to prove me wrong! I'm sitting at our hotel right now; Maddie is having her evening nap and Rus went to a convenience store to pick up a few groceries to make our stomachs stop growling.
We spent the weekend with both our families; it's quite the group when they mix together! But it was sooo encouraging to have them pray over us and Maddie, and to see all the support and love they have for us. Thanks!!
We have a busy day ahead of us tomorrow. At 7am we're at the hospital to start all her tests. They've reviewed her file and know all about her, but they want to do all their own echos and bloodwork and such. It's gonna be a long day.
Pray: that we have a good rest tonight and are ready to face the day tomorrow. From what we've heard, the PreAdmission Clinic experience is a lot harder than the actual surgery day.
Pray: we are both worn out emotionally and the surgery hasn't even happened yet.
Pray: for confidence for Rus as he leads our little family through this
Pray: for peace and strength for both of us. We have great confidence in our doctors, but we have an even greater confidence in the One who created these doctors and who formed Maddie and loves her more than us.
Pray: for rest for Madelyn tonight and tomorrow so she'll be strong and ready to face the surgery and recovery
Praise: the flight went great!
Praise: both of us have slept incredibly well this past week and we have to give the credit to God. When I worry, I don't sleep. Well, I've worried this week, and have still slept.
Praise: it may sound funny, but we're thankful that the time change gives us an extra hour instead of losing one!
We spent the weekend with both our families; it's quite the group when they mix together! But it was sooo encouraging to have them pray over us and Maddie, and to see all the support and love they have for us. Thanks!!
We have a busy day ahead of us tomorrow. At 7am we're at the hospital to start all her tests. They've reviewed her file and know all about her, but they want to do all their own echos and bloodwork and such. It's gonna be a long day.
Pray: that we have a good rest tonight and are ready to face the day tomorrow. From what we've heard, the PreAdmission Clinic experience is a lot harder than the actual surgery day.
Pray: we are both worn out emotionally and the surgery hasn't even happened yet.
Pray: for confidence for Rus as he leads our little family through this
Pray: for peace and strength for both of us. We have great confidence in our doctors, but we have an even greater confidence in the One who created these doctors and who formed Maddie and loves her more than us.
Pray: for rest for Madelyn tonight and tomorrow so she'll be strong and ready to face the surgery and recovery
Praise: the flight went great!
Praise: both of us have slept incredibly well this past week and we have to give the credit to God. When I worry, I don't sleep. Well, I've worried this week, and have still slept.
Praise: it may sound funny, but we're thankful that the time change gives us an extra hour instead of losing one!
Wednesday, July 15, 2009
Thundering Thoughts
My soul is feeling refreshed. I spent the morning praying with two dear friends, and I was so encouraged by their faith and confidence in God. At times when I doubt, I know there are others who will hold me up before God and speak for me. I was reminded that this surgery doesn't just involve the doctors and nurses, but God is there already preparing the doctors and filling the hospital with his presence. We prayed for continued health for Maddie as well as for Rus and I. We gave God the glory for carrying us this far and showing us that he is more than able to handle our fears and concerns.
There's a verse in the Bible that says God sometimes speaks in a whisper. And while this is true, today I heard him in a thunderstorm. Nothing calm or peaceful about it; the thunder spoke volumes. I can't remember ever being afraid of thunderstorms, in fact I usually enjoy them. With every clap of thunder it was as though God was telling me that he is so much bigger than this whole situation. The God who created the universe and all its weather systems also created and formed our little girl. He knows every inch of her, including the four millimeter growth in her heart.
I feel so much peace right now, and the only way to explain it is God. And as much as this whole situation sucks, God is continuously using it to bring him glory. I knew I needed to write this down so that the next time fear hits, and I know it will hit hard again, I can look back and be reminded of all that God is.
There's a verse in the Bible that says God sometimes speaks in a whisper. And while this is true, today I heard him in a thunderstorm. Nothing calm or peaceful about it; the thunder spoke volumes. I can't remember ever being afraid of thunderstorms, in fact I usually enjoy them. With every clap of thunder it was as though God was telling me that he is so much bigger than this whole situation. The God who created the universe and all its weather systems also created and formed our little girl. He knows every inch of her, including the four millimeter growth in her heart.
I feel so much peace right now, and the only way to explain it is God. And as much as this whole situation sucks, God is continuously using it to bring him glory. I knew I needed to write this down so that the next time fear hits, and I know it will hit hard again, I can look back and be reminded of all that God is.
Tuesday, July 14, 2009
Sunbeam
Isn't there an old Sunday School song about a sunbeam? Jesus wants me for a sunbeam? Or am I imagining that. I went for a drive tonight, just to get out of the house by myself. The sky has been so dark all day, gloomy and rainy, but at the same time a refreshing wind and cooler temperature came with it.
While I was driving, in the middle of a dark cloud, the sun emerged. It was only there for a few seconds, but what a beautiful picture. I could make up all sorts of analogies for what it meant; but for me it had a very literal meaning. There is always sun after a storm. Even when you can't see it because the clouds are in the way, it's still there. I was so encouraged.
When I'm down and all I can do is cry because this whole situation terrifies me, Maddie will smile and the sun comes out again. She has no idea what's going on. I think she feels our stress, but life is still so simple for her. Eat, sleep, play, poop. Her smiles brighten my whole world, especially when it's one that proves she recognizes us and knows who we are. I'm so hoping that as she wakes up from the surgery she'll smile at us, even if it's a weary and sedated smile.
Thanks so much for your words of encouragement and prayers. They mean so much to us.
While I was driving, in the middle of a dark cloud, the sun emerged. It was only there for a few seconds, but what a beautiful picture. I could make up all sorts of analogies for what it meant; but for me it had a very literal meaning. There is always sun after a storm. Even when you can't see it because the clouds are in the way, it's still there. I was so encouraged.
When I'm down and all I can do is cry because this whole situation terrifies me, Maddie will smile and the sun comes out again. She has no idea what's going on. I think she feels our stress, but life is still so simple for her. Eat, sleep, play, poop. Her smiles brighten my whole world, especially when it's one that proves she recognizes us and knows who we are. I'm so hoping that as she wakes up from the surgery she'll smile at us, even if it's a weary and sedated smile.
Thanks so much for your words of encouragement and prayers. They mean so much to us.
Sunday, July 12, 2009
Bubbles
I love blowing bubbles. As kids, we used to make our own bubble blowing mix, or maybe I should say my mom would make it! Bubbles are so pretty and when the sun hits them right you can see rainbows on them. They're also fun to chase and try to catch again on your bubble wand. Bubbles are peaceful and soothing to watch.
Well, my head feels like it's full of bubbles right now. So many thoughts floating around in my head , and when I try to catch them they float away, or I get distracted by a new one. So I apologize in advance for the randomness of this blog, but this is my current view of the world.
Yesterday we met a family whose son had a heart transplant at the same hospital that will be doing Maddie's surgery. And while it was information overload, it was also helpful to meet a family that has been through a similar situation. We were able to see some pictures and ask questions and because of it, I'm feeling much more confident going into this.
Our biggest thing right now is to keep Madelyn healthy. It's a tough balance between trusting God with her health and taking practical steps to help her avoid getting sick. We stayed home from church this morning to avoid being around lots of people, but how paranoid do we need to be? I almost feel like if we're putting her heart and health in God's hands, then we would have been able to go to church, but...
Some moments I think about the surgery and all the risks and I cry. Notice I said some moments, not some days; the next moment I'm crying because I'm so thankful we have a medical system that can do this surgery and take care of our little girl. Then I think about her hooked up to all those machines and being sedated. Usually in those moments I go pick her up and hold her for a long time.
She's so happy right now. She spends more time awake just smiling at the world. And she's so strong. It's hard thinking about after the surgery and how careful we'll have to be with her so we don't rip stitches or hurt her.
But for now we are so thankful for the moments we have with her. My favorite time of day is when I go pick her up in the morning and she recognizes me and smiles. I'm also thankful that she will be so young when the surgery is done and she won't remember any of the trauma.
As I mentioned at the beginning, random bubbles. Sometimes they pop, sometimes I catch them and sometimes they float away and I'm left wondering why I'm crying again.
We've had a lot of people say that they aren't able to leave comments on here, so if you'd like to send an email, we'd love to hear from you. Also, if you'd like to receive an email every time we update the blog, send an email to us and we'll make sure that happens.
rusandbonnie@hotmail.com
Well, my head feels like it's full of bubbles right now. So many thoughts floating around in my head , and when I try to catch them they float away, or I get distracted by a new one. So I apologize in advance for the randomness of this blog, but this is my current view of the world.
Yesterday we met a family whose son had a heart transplant at the same hospital that will be doing Maddie's surgery. And while it was information overload, it was also helpful to meet a family that has been through a similar situation. We were able to see some pictures and ask questions and because of it, I'm feeling much more confident going into this.
Our biggest thing right now is to keep Madelyn healthy. It's a tough balance between trusting God with her health and taking practical steps to help her avoid getting sick. We stayed home from church this morning to avoid being around lots of people, but how paranoid do we need to be? I almost feel like if we're putting her heart and health in God's hands, then we would have been able to go to church, but...
Some moments I think about the surgery and all the risks and I cry. Notice I said some moments, not some days; the next moment I'm crying because I'm so thankful we have a medical system that can do this surgery and take care of our little girl. Then I think about her hooked up to all those machines and being sedated. Usually in those moments I go pick her up and hold her for a long time.
She's so happy right now. She spends more time awake just smiling at the world. And she's so strong. It's hard thinking about after the surgery and how careful we'll have to be with her so we don't rip stitches or hurt her.
But for now we are so thankful for the moments we have with her. My favorite time of day is when I go pick her up in the morning and she recognizes me and smiles. I'm also thankful that she will be so young when the surgery is done and she won't remember any of the trauma.
As I mentioned at the beginning, random bubbles. Sometimes they pop, sometimes I catch them and sometimes they float away and I'm left wondering why I'm crying again.
We've had a lot of people say that they aren't able to leave comments on here, so if you'd like to send an email, we'd love to hear from you. Also, if you'd like to receive an email every time we update the blog, send an email to us and we'll make sure that happens.
rusandbonnie@hotmail.com
Wednesday, July 8, 2009
Surgery Date
So we got a call from the Variety Heart Center today and we have a surgery date. We fly to Edmonton on Sunday the 19th, Madelyn is admitted to the hospital on Monday the 20th, and her surgery will be Tuesday the 21st.
How are we feeling? Well, how many emotions can you name... My initial reaction was relief. We will finally have answers as to what this thing is and we won't have to worry anymore about it breaking loose inside her heart and causing a stroke. Relief was followed by worry, fear, and excitement; all of which invoked tears.
I worry, I always have, so dealing with this whole situation has been quite the test of faith for me. We had to wait a week after finding out that they had seen something on the ultrasound to find out what was going on, and that was the start of a journey dealing with fear, worry, and doubt. Whenever the worry creeps in, I know I need to immediately give it over to God or it will take over. I also am not a fan of the unknown, nor am I very patient. When I first got pregnant I joked with some friends that the baby would be born late just to test my patience. Little did I know how patient I would have to be through this whole thing.
So now we wait. We have a surgery date, but we still have to get to that date. Madelyn needs to stay healthy so the surgery isn't postponed again.
She had her immunizations yesterday and she proved to be quite a tough kid. During the first needle, she just looked at me like 'what are you doing to me?' The second one made her yelp a little. But it was only when I picked her up off the doctor's table that she started crying, poor kid. I walked around with her, and she was almost asleep when someone in the waiting room sneezed. She jerked, and the crying started again. I found it pretty funny, but tried not to laugh too much at her. It may be wierd but I found the immunizations encouraging. Her stamina and reaction to them assured me that she could handle surgery. Obviously needles and open heart surgery are two very different things, but I still found it comforting.
Pray:
Pray that Maddie will remain healthy and keep growing stronger
Pray for peace for Rus and I as we get closer to the surgery date
Pray for travel to Edmonton, that it will be uneventful and that she'll be ok during take off and landing
Pray for the doctors that they will have wisdom and steady hands
Pray that we will use this whole experience to glorify God and that he will receive the honour for her healing
Praise:
Maddie is smiling and healthy and growing
We don't have to wait longer for her surgery
We will be back in time for my brother's wedding! (This was starting to be a big concern because we didn't have the date yet)
That God has given us peace this far
For all of you, and the support you've given us
How are we feeling? Well, how many emotions can you name... My initial reaction was relief. We will finally have answers as to what this thing is and we won't have to worry anymore about it breaking loose inside her heart and causing a stroke. Relief was followed by worry, fear, and excitement; all of which invoked tears.
I worry, I always have, so dealing with this whole situation has been quite the test of faith for me. We had to wait a week after finding out that they had seen something on the ultrasound to find out what was going on, and that was the start of a journey dealing with fear, worry, and doubt. Whenever the worry creeps in, I know I need to immediately give it over to God or it will take over. I also am not a fan of the unknown, nor am I very patient. When I first got pregnant I joked with some friends that the baby would be born late just to test my patience. Little did I know how patient I would have to be through this whole thing.
So now we wait. We have a surgery date, but we still have to get to that date. Madelyn needs to stay healthy so the surgery isn't postponed again.
She had her immunizations yesterday and she proved to be quite a tough kid. During the first needle, she just looked at me like 'what are you doing to me?' The second one made her yelp a little. But it was only when I picked her up off the doctor's table that she started crying, poor kid. I walked around with her, and she was almost asleep when someone in the waiting room sneezed. She jerked, and the crying started again. I found it pretty funny, but tried not to laugh too much at her. It may be wierd but I found the immunizations encouraging. Her stamina and reaction to them assured me that she could handle surgery. Obviously needles and open heart surgery are two very different things, but I still found it comforting.
Pray:
Pray that Maddie will remain healthy and keep growing stronger
Pray for peace for Rus and I as we get closer to the surgery date
Pray for travel to Edmonton, that it will be uneventful and that she'll be ok during take off and landing
Pray for the doctors that they will have wisdom and steady hands
Pray that we will use this whole experience to glorify God and that he will receive the honour for her healing
Praise:
Maddie is smiling and healthy and growing
We don't have to wait longer for her surgery
We will be back in time for my brother's wedding! (This was starting to be a big concern because we didn't have the date yet)
That God has given us peace this far
For all of you, and the support you've given us
Sunday, July 5, 2009
Still Waiting...
To answer everyone's question, no, we haven't heard a surgery date yet. I emailed the Variety Heart Center yesterday to let them know that we are more than willing to head out to Edmonton on a couple of days' notice. Rus' work has been amazing and has let him take time off for all Maddie's appointments, as well as taking all the time he needs for her surgery and recovery. The health nurse was here last week and said Madelyn's heartbeat is still strong and steady, for which we are so thankful and give all credit to the power of God.
And Maddie has started smiling! It's so cute. Sometimes we can make her smile, but my favorite is when I go to get her in the morning and she grins when she sees me. Awww! It's hard to get a picture of it though, she's not very cooperative sometimes.
Thanks so much for all the support you've given us. The responses we've gotten on this blog and in other forms have made me cry on many occasions. It's overwhelming to know that so many care about us and Madelyn and are praying for us. But I am wondering how long I can blame my emotionalness (not a word, I know) on postpartum hormones...
This has been a very random blog entry, but I thought I should let everyone know what's going on. And now I need to go turn off our tv because it's playing a Rita MacNeil special and I really don't want to listen to this. We had finished watching the Bourne Supremacy and I guess this is what followed. Wierd combination, Bourne Supremacy then Rita MacNeil. Yeah, I should go to sleep. Thanks again for praying, and please keep it up! Maddie sends everyone a smile.
And Maddie has started smiling! It's so cute. Sometimes we can make her smile, but my favorite is when I go to get her in the morning and she grins when she sees me. Awww! It's hard to get a picture of it though, she's not very cooperative sometimes.
Thanks so much for all the support you've given us. The responses we've gotten on this blog and in other forms have made me cry on many occasions. It's overwhelming to know that so many care about us and Madelyn and are praying for us. But I am wondering how long I can blame my emotionalness (not a word, I know) on postpartum hormones...
This has been a very random blog entry, but I thought I should let everyone know what's going on. And now I need to go turn off our tv because it's playing a Rita MacNeil special and I really don't want to listen to this. We had finished watching the Bourne Supremacy and I guess this is what followed. Wierd combination, Bourne Supremacy then Rita MacNeil. Yeah, I should go to sleep. Thanks again for praying, and please keep it up! Maddie sends everyone a smile.
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