So I'm back. I've started keeping a journal again and figured I should start blogging again too! Writing brings a certain sanity to my world, a world where I am seriously lacking sleep. To bring you up to speed, Madelyn is now 8 1/2 months old, growing like crazy, eating solid foods, and almost crawling. She plays, she rolls over, and she talks (mamamamama). In September she was declared healed and healthy by our wonderful cardiologist. Her next appointment is in three years and that's just for a follow-up! We are sooo grateful for the prayers and support through everything, and are thrilled that she is doing so well.
Lately Madelyn's nights have been horrible... up a few times every night for at least an hour. Sleep has been a fleeting thought, but one I think often! And though I'm exhausted and can't wait to sleep through the night again, I love the times when she cuddles and rests in my arms. There's something incredible about babies, their innocence and vulnerability. Sometimes, when she lets me, I sit in our rocking chair and stare outside at the stars. In the still of the night I'm reminded that the God who created the universe and put the stars in the sky, came down in the form of a helpless, sleeping baby. Wow.
Thursday, January 21, 2010
Wednesday, July 29, 2009
And We're Home
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!
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!
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.
Subscribe to:
Posts (Atom)
