From a cow and a ladybug!
Showing posts with label Madeleine. Show all posts
Showing posts with label Madeleine. Show all posts
Friday, November 1, 2013
Sunday, September 1, 2013
Progress
On Tuesday, the babies and I woke up far too early and headed out to Sick Kids Hospital for Madeleine's usual three-month checkup with her neurosurgeon. He's seen her four times now since February, and thankfully, we haven't yet had any issues to worry about as far as her shunt function goes. He asked a few questions about Madeleine's motor development and about potential issues, like having a preference for one side of her body over the other. No, I told him, no problems yet that we can see.
I was hesitant to ask the question I really wanted to ask, the only question that really matters. "Do we know anything for sure yet? Do we know if she's going to be okay?"
He answered in that way that doctors do sometimes, when they don't want to commit to something they can't guarantee. "It's too early to say," he said. "But I will say that given the severity of her bleed, I certainly didn't expect her to be doing this well."
It was just what I was hoping for, what we had been dreaming of all of these months. But at the same time, there was still something nagging at me, still a whirl of anxiety making it's way through my chest. Of course I'm grateful to hear that Madeleine is doing better than expected - of course! But even though we've been watching her blow us all always this whole time, even though we had a feeling that she was doing better than she could have been, even though every little new thing she does is a big step in the right direction, I had been trying very hard to not consider the outcome I've always really been hoping for - that maybe nothing will be wrong with her. I'm hesitant and slightly ashamed to even write those words, to let them slip out of the secret place in the back of my mind I've reserved for the best case scenario. Best to prepare myself, I figured. Best not to get my hopes up in case something still goes wrong. Best to take it a day at a time and not get ahead of myself.
I'm ahead of myself. I can't help it. Each time Madeleine impresses her doctors, the part of me that dreams of my girl running and playing and having chatty, articulate conversations gets a little more excited. The part of me that hopes that she'll grow up and we'll look back and say, "you had hydrocephalus, and look at you know!". The part of me that hopes that one day we will be the people telling the scared, new preemie mom that their daughter had a grade III intraventricular hemorrhage and you'd never even know it. And each time nothing goes wrong, that hope gets a little bit stronger.
Of course, I know that if that doesn't happen, if she has developmental impairments that are mild or moderate or crazy severe, if she ends up not being able to walk without help or talk or write or if she needs special help at school, if she has trouble seeing or hearing or whatever it is, it will be more than fine. She has already shown us that she is perfect and incredible. I know that even the progress we have made so far is an achievement, that many babies like Madeleine haven't done so well, that we should be counting our blessings for what we have. I know that no matter what, our lives won't really change that much at all, and motherhood will still by far be the best thing that will ever happen to me, the most incredible, life-changing gift I've ever been given. I know that health issues and disabilities do not at all change the heart of who a child is. That they will not change who Madeleine is.
But then there is the part of me who dreams of Madeleine's future and wants her to have only the best, most incredible, easy, beautiful life. The part of me who doesn't always count her blessings. The part of me that hopes that we'll beat the odds despite everything we've been through. That part just might end up pretty disappointed.
I was hesitant to ask the question I really wanted to ask, the only question that really matters. "Do we know anything for sure yet? Do we know if she's going to be okay?"
He answered in that way that doctors do sometimes, when they don't want to commit to something they can't guarantee. "It's too early to say," he said. "But I will say that given the severity of her bleed, I certainly didn't expect her to be doing this well."
It was just what I was hoping for, what we had been dreaming of all of these months. But at the same time, there was still something nagging at me, still a whirl of anxiety making it's way through my chest. Of course I'm grateful to hear that Madeleine is doing better than expected - of course! But even though we've been watching her blow us all always this whole time, even though we had a feeling that she was doing better than she could have been, even though every little new thing she does is a big step in the right direction, I had been trying very hard to not consider the outcome I've always really been hoping for - that maybe nothing will be wrong with her. I'm hesitant and slightly ashamed to even write those words, to let them slip out of the secret place in the back of my mind I've reserved for the best case scenario. Best to prepare myself, I figured. Best not to get my hopes up in case something still goes wrong. Best to take it a day at a time and not get ahead of myself.
I'm ahead of myself. I can't help it. Each time Madeleine impresses her doctors, the part of me that dreams of my girl running and playing and having chatty, articulate conversations gets a little more excited. The part of me that hopes that she'll grow up and we'll look back and say, "you had hydrocephalus, and look at you know!". The part of me that hopes that one day we will be the people telling the scared, new preemie mom that their daughter had a grade III intraventricular hemorrhage and you'd never even know it. And each time nothing goes wrong, that hope gets a little bit stronger.
Of course, I know that if that doesn't happen, if she has developmental impairments that are mild or moderate or crazy severe, if she ends up not being able to walk without help or talk or write or if she needs special help at school, if she has trouble seeing or hearing or whatever it is, it will be more than fine. She has already shown us that she is perfect and incredible. I know that even the progress we have made so far is an achievement, that many babies like Madeleine haven't done so well, that we should be counting our blessings for what we have. I know that no matter what, our lives won't really change that much at all, and motherhood will still by far be the best thing that will ever happen to me, the most incredible, life-changing gift I've ever been given. I know that health issues and disabilities do not at all change the heart of who a child is. That they will not change who Madeleine is.
But then there is the part of me who dreams of Madeleine's future and wants her to have only the best, most incredible, easy, beautiful life. The part of me who doesn't always count her blessings. The part of me that hopes that we'll beat the odds despite everything we've been through. That part just might end up pretty disappointed.
Sunday, June 2, 2013
Matty & Maddie
I usually don't get to watch an entire TV show from start to finish these days, but I do get to catch bits and pieces here and there (usually online). This morning I saw a clip of an interview with Kristen Bell on Ellen, the first since she'd given birth to her first baby a few months back, and in it, she spoke about how her partner, Dax Shepard, had taken to fatherhood. Her verdict? "It's like he's made a new best friend."
When I heard that, I knew that it was exactly the perfect way to describe what I had been feeling about the relationship between Matt and Madeleine since she's come home. It's like he's made a new best friend.
I had a feeling, well before I ever got pregnant, that Matt would be an incredible father. I figured that all of the traits that make him a good husband - and a good human being in general - would easily transfer over when he became a dad. He has a truly kind heart. He is incredibly empathic, very patient and understanding. He is reliable, loyal and trustworthy. He is hilarious. And he also just really happens to like children, which I assume is always a plus. But, even still, even though I knew all of these things about him in advance, I did worry a little bit. How are you really supposed to know how someone is going to react to such a big, permanent life change? What if he didn't take to parenthood as well as I wanted him to?
Turns out I needn't have worried - Matt is a natural, involved parent, and I learn from his example on a daily basis. But although I did have a suspicion that this would be the case, I did not expect just how strong his bond with Madeleine would become.
He loves Reid to pieces of course (though there is pretty much nothing not to love about Reid!). He takes care of Reid so well, and will be such a wonderful role model for him as he grows. But seeing him with Madeleine is something else. He knows all her little quirks, such as the specific way she needs to be burped so she doesn't puke, or how she likes to be put down for bed. He loves choosing her outfits, loves getting her to smile (and NO ONE can make Maddie smile like Matt can), loves giving her cuddles and kisses. He gives her endearing nicknames. They have inside jokes. He pretty much completely adores her, and the feeling is certainly mutual.
As Maddie's mother, it excites me to no end to think about what a gift this relationship will be in her life as she grows. I hope, of course, that she always feels bonded to me as well, that she knows I love her unconditionally and believe in her and think she is absolute full-on perfection. But I feel incredibly blessed to know that her dad thinks the world of her, that her favourite person on the planet thinks she is his favourite too.
His new best friend.
When I heard that, I knew that it was exactly the perfect way to describe what I had been feeling about the relationship between Matt and Madeleine since she's come home. It's like he's made a new best friend.
I had a feeling, well before I ever got pregnant, that Matt would be an incredible father. I figured that all of the traits that make him a good husband - and a good human being in general - would easily transfer over when he became a dad. He has a truly kind heart. He is incredibly empathic, very patient and understanding. He is reliable, loyal and trustworthy. He is hilarious. And he also just really happens to like children, which I assume is always a plus. But, even still, even though I knew all of these things about him in advance, I did worry a little bit. How are you really supposed to know how someone is going to react to such a big, permanent life change? What if he didn't take to parenthood as well as I wanted him to?
Turns out I needn't have worried - Matt is a natural, involved parent, and I learn from his example on a daily basis. But although I did have a suspicion that this would be the case, I did not expect just how strong his bond with Madeleine would become.
He loves Reid to pieces of course (though there is pretty much nothing not to love about Reid!). He takes care of Reid so well, and will be such a wonderful role model for him as he grows. But seeing him with Madeleine is something else. He knows all her little quirks, such as the specific way she needs to be burped so she doesn't puke, or how she likes to be put down for bed. He loves choosing her outfits, loves getting her to smile (and NO ONE can make Maddie smile like Matt can), loves giving her cuddles and kisses. He gives her endearing nicknames. They have inside jokes. He pretty much completely adores her, and the feeling is certainly mutual.
As Maddie's mother, it excites me to no end to think about what a gift this relationship will be in her life as she grows. I hope, of course, that she always feels bonded to me as well, that she knows I love her unconditionally and believe in her and think she is absolute full-on perfection. But I feel incredibly blessed to know that her dad thinks the world of her, that her favourite person on the planet thinks she is his favourite too.
His new best friend.
Tuesday, April 16, 2013
Home, Part One
Since I last posted an update, an awful lot has happened. We hit the 100 day mark in the NICU. My due date came and went. I turned 27. We had meltdowns and felt like the babies would never come home. And then, one day, just like that, we packed Madeleine into her car seat and drove home.
Truth be told, I am still adjusting to the idea that we are full-time, full-on parents. Madeleine is home to stay, she lives here now and always will. At the same time, Reid is still in the hospital.
Only a little while ago it looked like Reid would actually be the one to come home first. Madeleine had always been one step ahead of Reid in terms of development, but then her surgery levelled the playing field a bit and allowed him to not only catch up, but surpass his sister. He took off like a bolt when it came to oral feeds, but then he failed his car seat test (three times!) Add to that a mysterious rash and a suspected tummy bug, and his discharge date got pushed back at least a week or two. Since Madeleine was no longer in need of hospital care, she came home on her own.
Having Madeleine home has been, like everything thus far, the best and worst thing simultaneously. But this time at least, it is the best and worst thing the way it normally is for new parents and not the way it has been under our unique NICU circumstances. We are tired in a way that we never thought possible, anxious, snappy, and, no really, seriously, mega tired, but at the same time, it is incredible. It is everything we'd hoped it would be, but never really thought we could have after what felt like a never-ending NICU stay. There have been rocky moments, but in such a normal, 'all parents experience this' kind of way that even the bad parts don't seem so bad. It is what we envisioned when we first got pregnant many moons ago. (Although…did I mention we are really, really tired?)
When we first brought Maddie home, I started to wonder if maybe it was actually better to only have one baby home at first until we figure out what we're doing (it turns out one baby on its own is a lot of work too!). Now though, I'm thinking that it is actually much, much worse to have one baby left in the NICU than it was to have two. Not only is it a logistical nightmare - all the back and forth of before without actually having any free time or energy - but you also know exactly what you're missing. I cannot wait to have Reid at home with us where he belongs.
Even though I am struggling having my son in the hospital while we get to enjoy Madeleine at home all day, it is worth remembering that the fact that she is home in the first place means that we are almost completely over the incredible hurdle that is a long-term NICU stay. Until Madeleine came home, it still felt like we would be there forever. Now, we know that we won't, and furthermore that this is really just the beginning of what it was always supposed to be like. A big milestone, to say the least.
Truth be told, I am still adjusting to the idea that we are full-time, full-on parents. Madeleine is home to stay, she lives here now and always will. At the same time, Reid is still in the hospital.
Only a little while ago it looked like Reid would actually be the one to come home first. Madeleine had always been one step ahead of Reid in terms of development, but then her surgery levelled the playing field a bit and allowed him to not only catch up, but surpass his sister. He took off like a bolt when it came to oral feeds, but then he failed his car seat test (three times!) Add to that a mysterious rash and a suspected tummy bug, and his discharge date got pushed back at least a week or two. Since Madeleine was no longer in need of hospital care, she came home on her own.
Having Madeleine home has been, like everything thus far, the best and worst thing simultaneously. But this time at least, it is the best and worst thing the way it normally is for new parents and not the way it has been under our unique NICU circumstances. We are tired in a way that we never thought possible, anxious, snappy, and, no really, seriously, mega tired, but at the same time, it is incredible. It is everything we'd hoped it would be, but never really thought we could have after what felt like a never-ending NICU stay. There have been rocky moments, but in such a normal, 'all parents experience this' kind of way that even the bad parts don't seem so bad. It is what we envisioned when we first got pregnant many moons ago. (Although…did I mention we are really, really tired?)
When we first brought Maddie home, I started to wonder if maybe it was actually better to only have one baby home at first until we figure out what we're doing (it turns out one baby on its own is a lot of work too!). Now though, I'm thinking that it is actually much, much worse to have one baby left in the NICU than it was to have two. Not only is it a logistical nightmare - all the back and forth of before without actually having any free time or energy - but you also know exactly what you're missing. I cannot wait to have Reid at home with us where he belongs.
Even though I am struggling having my son in the hospital while we get to enjoy Madeleine at home all day, it is worth remembering that the fact that she is home in the first place means that we are almost completely over the incredible hurdle that is a long-term NICU stay. Until Madeleine came home, it still felt like we would be there forever. Now, we know that we won't, and furthermore that this is really just the beginning of what it was always supposed to be like. A big milestone, to say the least.
Friday, February 1, 2013
Surgery Number One
Hard to believe it's only been a week since my last post, because boy has that week been eventful. Having Madeleine at Sick Kids has been very challenging for a number of reasons - another hospital visit to cram into the day, more travel time, a completely different facility with completely different ways of doing things that we don't always feel comfortable with, generally feeling out of the loop when it comes to Madeleine's care and having to walk the line of being an advocate while not being pushy. But mostly the hard part was that she needed surgery, and will probably need another one in a few weeks time.
The neurosurgery team here saw Madeleine's MRI results and decided that she most definitely needed a shunt in order to relieve the pressure and swelling in her ventricles that has resulted from the blocked flow of fluid. We knew of course that this was happening based on her head circumference measurements and her weekly ultrasounds, but until we got to Sick Kids I didn't know just how bad it was. They went ahead and placed a temporary subgaleal shunt in Madeleine's head to start the process of draining the fluid, and will they likely also have to insert a permanent shunt in a few weeks once Madeleine has had a chance to gain more weight and put on some more subcutaneous fat.
We are a few days out from surgery now, and Madeleine is doing okay. She is still ventilated, and was initially having trouble tolerating her feeds, but is now back to her full amount every two hours with only small amounts coming back up, and she should be extubated soon. The other issue of concern is what this will all mean for Madeleine's long-term brain development, but since it is pretty much completely impossible to gauge that right now (or anytime soon, for that matter), we're doing our best to push that worry aside. Yesterday she was given the green light from neurosurgery to be transferred back to Sunnybrook, and we are hoping she will be discharged soon.
Even though Madeleine's brain has become the more pressing priority as of late, we have still been visiting Reid as much as we can, and he has been getting lots of cuddles. This is important to note because, does that boy ever like to be cuddled!!!! Since his lungs are not as strong as Madeleine's (and also perhaps because he had the issue with his murmur), he has a tendency to struggle a little more with keeping his heart rate and oxygen saturation steady. Take that boy out for a cuddle though, and he does so well! It is so wonderful to know that something we absolutely love getting the chance to do is also something that makes him so much happier and stronger. (Note to Reid: please maintain this preference forever and ever ok thanks.)
This past week was definitely one of the toughest we've had since the babies were born, but now that Madeleine's surgery is complete and both babies are doing fairly well, it feels like we can breathe a little easier again. I am definitely starting to understand well why they call the NICU experience a rollercoaster ride.
[caption id="attachment_454" align="aligncenter" width="611"]
Madeleine, pre-surgery. Small, but mighty (and also super cute).[/caption]
[caption id="attachment_455" align="aligncenter" width="609"]
Reid showing off his breathing skills and his big blue eyes[/caption]
The neurosurgery team here saw Madeleine's MRI results and decided that she most definitely needed a shunt in order to relieve the pressure and swelling in her ventricles that has resulted from the blocked flow of fluid. We knew of course that this was happening based on her head circumference measurements and her weekly ultrasounds, but until we got to Sick Kids I didn't know just how bad it was. They went ahead and placed a temporary subgaleal shunt in Madeleine's head to start the process of draining the fluid, and will they likely also have to insert a permanent shunt in a few weeks once Madeleine has had a chance to gain more weight and put on some more subcutaneous fat.
We are a few days out from surgery now, and Madeleine is doing okay. She is still ventilated, and was initially having trouble tolerating her feeds, but is now back to her full amount every two hours with only small amounts coming back up, and she should be extubated soon. The other issue of concern is what this will all mean for Madeleine's long-term brain development, but since it is pretty much completely impossible to gauge that right now (or anytime soon, for that matter), we're doing our best to push that worry aside. Yesterday she was given the green light from neurosurgery to be transferred back to Sunnybrook, and we are hoping she will be discharged soon.
Even though Madeleine's brain has become the more pressing priority as of late, we have still been visiting Reid as much as we can, and he has been getting lots of cuddles. This is important to note because, does that boy ever like to be cuddled!!!! Since his lungs are not as strong as Madeleine's (and also perhaps because he had the issue with his murmur), he has a tendency to struggle a little more with keeping his heart rate and oxygen saturation steady. Take that boy out for a cuddle though, and he does so well! It is so wonderful to know that something we absolutely love getting the chance to do is also something that makes him so much happier and stronger. (Note to Reid: please maintain this preference forever and ever ok thanks.)
This past week was definitely one of the toughest we've had since the babies were born, but now that Madeleine's surgery is complete and both babies are doing fairly well, it feels like we can breathe a little easier again. I am definitely starting to understand well why they call the NICU experience a rollercoaster ride.
[caption id="attachment_454" align="aligncenter" width="611"]
Madeleine, pre-surgery. Small, but mighty (and also super cute).[/caption][caption id="attachment_455" align="aligncenter" width="609"]
Reid showing off his breathing skills and his big blue eyes[/caption]Friday, January 25, 2013
Visit to Sick Kids
I've shared this update with people individually here and there, but I thought I would post it here as well for anyone out of the loop. Madeleine's ventricles have continued to grow since her last ultrasound, and the neurosurgery team at Sick Kids decided it was time to bring her in for an MRI, and to most likely place a shunt.
Madeleine was transferred yesterday afternoon, so I headed down there to be with her. It was a difficult day for me, as it was stressful trying to adjust to a totally new hospital with a totally different way of doing things, but the good news is that Madeleine seemed completely unfazed by the entire thing (I guess that's the thing about babies!). She is still on CPAP at Sick Kids, except they don't seem to use the big velcro helmet to hold it in place, which was nice as I was able to see so much of her face. And I basically stared at it for two hours straight when the nurse took her out so that we could have a cuddle before her MRI.
I've said a million times now how much I love cuddling with my little ones, but we've always only ever done kangaroo cuddles (holding her up against my chest skin-to-skin). There are a number of benefits to preemie development with that kind of snuggle, so I was a little bit confused when the nurse took Madeleine out without giving me a gown or at least expecting me to take my shirt off. Instead she just wrapped Madeleine in a blanket and handed her to me. I realize this is how 99% of mothers usually hold their babies - cradled in their arms, not naked on their chests - but the idea that I could just sit there in a rocking chair with a baby in my arms was so completely foreign to me! I had to ask the nurse repeatedly if she was sure ("Really though? With Madeleine? You're sure??"), and then it occurred to me that Madeleine and Reid were actually full-on real babies that will eventually breathe on their own and leave their incubators and get fat and come home and cry and be held in our arms like all the other babies. Unreal.
Our new cuddle position and Madeleine's lack of helmet meant I could get some nice, out-of-incubator photos of my girl.
I will head back down to Sick Kids today to speak with the neurosurgeons and see what they've decided to do based on the MRI results. Yesterday it sounded like they were trying to get an OR booked for today, so I am preparing myself mentally for Madeleine having surgery at some point this afternoon. It's not at all the outcome we were hoping for, but my main concern now is getting Madeleine's brain back the way it should be (and if that means a shunt, I guess that's what we'll do).
Please keep Madeleine in your thoughts today. She is such an incredible little girl.
Madeleine was transferred yesterday afternoon, so I headed down there to be with her. It was a difficult day for me, as it was stressful trying to adjust to a totally new hospital with a totally different way of doing things, but the good news is that Madeleine seemed completely unfazed by the entire thing (I guess that's the thing about babies!). She is still on CPAP at Sick Kids, except they don't seem to use the big velcro helmet to hold it in place, which was nice as I was able to see so much of her face. And I basically stared at it for two hours straight when the nurse took her out so that we could have a cuddle before her MRI.
I've said a million times now how much I love cuddling with my little ones, but we've always only ever done kangaroo cuddles (holding her up against my chest skin-to-skin). There are a number of benefits to preemie development with that kind of snuggle, so I was a little bit confused when the nurse took Madeleine out without giving me a gown or at least expecting me to take my shirt off. Instead she just wrapped Madeleine in a blanket and handed her to me. I realize this is how 99% of mothers usually hold their babies - cradled in their arms, not naked on their chests - but the idea that I could just sit there in a rocking chair with a baby in my arms was so completely foreign to me! I had to ask the nurse repeatedly if she was sure ("Really though? With Madeleine? You're sure??"), and then it occurred to me that Madeleine and Reid were actually full-on real babies that will eventually breathe on their own and leave their incubators and get fat and come home and cry and be held in our arms like all the other babies. Unreal.
Our new cuddle position and Madeleine's lack of helmet meant I could get some nice, out-of-incubator photos of my girl.
I will head back down to Sick Kids today to speak with the neurosurgeons and see what they've decided to do based on the MRI results. Yesterday it sounded like they were trying to get an OR booked for today, so I am preparing myself mentally for Madeleine having surgery at some point this afternoon. It's not at all the outcome we were hoping for, but my main concern now is getting Madeleine's brain back the way it should be (and if that means a shunt, I guess that's what we'll do).
Please keep Madeleine in your thoughts today. She is such an incredible little girl.
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