Once the babies came home and life became "normal", I started writing less for day-to-day updating purposes, and more to share my story - both for myself and for other moms. I wanted to give something back to the small community of blogging preemie moms who didn't even know how much they had helped me, how much it made a difference in those early hours of the morning when I felt like I was the only mother in the world whose babies were struggling. Because of this, I was so happy when Trish at the wonderful NICU Central asked to share some of my posts on her blog for other NICU families. The further away we get from our time in the NICU, the more I realize how incredibly important it is for preemie moms and dads to share their stories, to hear the stories of others, and to be part of some kind of community - big or small, online or in real life - where they can connect with people who understand what they're going through. And if you happen to be a mom or dad visiting from NICU Central, my sincere hope is that one of my posts might do that for you.
Showing posts with label Hydrocephalus. Show all posts
Showing posts with label Hydrocephalus. Show all posts
Tuesday, October 1, 2013
NICU Central
When the twins entered the NICU, and the words 'apneic spells', 'bradycardia', 'PDA' and 'intraventricular hemorrhage' were starting to become part of our daily conversations, I began scouring the Internet looking for stories from other preemie moms. I wanted to hear from people who had made it, and I desperately wanted to know what their lives looked like "on the other side". Of particular interest to me were the few blogs I found whose children were also micro preemies, or who also had twins, or (most helpful of all) who also had brain bleeds and shunts. I would stay up reading them late into the night huddled in my bed over my laptop screen, taking in as much as I could. When we knew that Madeleine had a bleed in her brain, I needed to read about what could come next, the subgaleal shunt and the head ultrasounds, and the second shunt surgery later on. I needed to read about babies coming home, I needed to read about them growing up, I needed to read about what life was like when your child was developmentally delayed, or needing a shunt revision, or living with cerebral palsy. I just needed to read as much as I could about what my future may or may not realistically look like. I really needed preemie blogs.
Once the babies came home and life became "normal", I started writing less for day-to-day updating purposes, and more to share my story - both for myself and for other moms. I wanted to give something back to the small community of blogging preemie moms who didn't even know how much they had helped me, how much it made a difference in those early hours of the morning when I felt like I was the only mother in the world whose babies were struggling. Because of this, I was so happy when Trish at the wonderful NICU Central asked to share some of my posts on her blog for other NICU families. The further away we get from our time in the NICU, the more I realize how incredibly important it is for preemie moms and dads to share their stories, to hear the stories of others, and to be part of some kind of community - big or small, online or in real life - where they can connect with people who understand what they're going through. And if you happen to be a mom or dad visiting from NICU Central, my sincere hope is that one of my posts might do that for you.
Once the babies came home and life became "normal", I started writing less for day-to-day updating purposes, and more to share my story - both for myself and for other moms. I wanted to give something back to the small community of blogging preemie moms who didn't even know how much they had helped me, how much it made a difference in those early hours of the morning when I felt like I was the only mother in the world whose babies were struggling. Because of this, I was so happy when Trish at the wonderful NICU Central asked to share some of my posts on her blog for other NICU families. The further away we get from our time in the NICU, the more I realize how incredibly important it is for preemie moms and dads to share their stories, to hear the stories of others, and to be part of some kind of community - big or small, online or in real life - where they can connect with people who understand what they're going through. And if you happen to be a mom or dad visiting from NICU Central, my sincere hope is that one of my posts might do that for you.
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.
Thursday, July 25, 2013
Being a Preemie Mom
I don't leave the house much these days. It takes so much coordination just to get out the door, and then, if I finally make it to my destination, I actually have to...be there. Do things. Feed the babies and change their diapers and pray that they don't cry, and oh, it's just so much harder when I'm not at home with all the STUFF. Home has such a nice, familiar routine to it, and taking two babies out just feels like asking for trouble.
Thankfully though (and like most things with parenting, I think), when we do leave, it's usually never as bad as I think it's going to be. I am getting fairly skilled at getting the twins in and out of the stroller, I've made it through one massive, in-public poo blowout, and I've managed to feed both screaming babies in a random school parking lot without having an anxiety attack. WIN.
Finally beginning to do these things - going out in public like a regular mom - was a big deal, and something I'm pretty proud of. But it's about so much more than just having it together enough to leave the house. Even though we knew when the twins were born that the goal was to leave the hospital eventually and live a normal life, the fact that we did that, that we are doing that, still feels jarring to me. I know how to exist with my babies at home, but taking them out into the world feels so foreign. We are doing something totally normal and completely abnormal at the same time. Nobody looks at us and sees it, nobody senses how much of an accomplishment it is to do this normal stuff. Nobody realizes that being out in the world like this is something that was never guaranteed to us when our babies were born fifteen weeks too soon.
Out in the world, at the doctor's office or the deli counter, I feel really, really proud of these little babies. These little babies, who lived in a hospital for the first three-and-a-half months of their lives. These little babies who never looked like everyone else's babies, who never seemed like they belonged out in the world where the 'normal' babies lived. My babies are PREEMIES. They hang out in the NICU with the nurses, not at the grocery store to be cooed at by the checkout girl. My daughter has a shunt! She sees a neurosurgeon! SHE HAD A GRADE III INTRAVENTRICULAR HEMORRHAGE! She's not a normal baby.
People are fascinated by twins, and they love to stop and ask questions when they see a second baby hiding away at the bottom of the stroller. "Yes, yes, twins," I want to say, "but look at my babies! Aren't they beautiful?! They could have died but they didn't and now here we are in the grocery store! Isn't it amazing?!"
When we were still in the hospital, I remember thinking that I didn't want to become a 'preemie mom'. I was a mom of preemies, sure, but I didn't want that to be who I was. I didn't want my experience as a mother to be limited by the abnormal circumstances of my children's entrance into the world. And while I do still feel like I can find common ground with moms of full-term, typical babies, there is still a very large part of me that feels so very different. A large part that can't let go of what happened. A large part that doesn't want to just yet.
I know one day this will matter less. Madeleine and Reid will grow up and our lives will progress and change, and their prematurity won't be such a defining aspect of who they are. One day, hopefully, it won't be such a definitely aspect of who I am either. But, for now at least, it really, really is.
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Thankfully though (and like most things with parenting, I think), when we do leave, it's usually never as bad as I think it's going to be. I am getting fairly skilled at getting the twins in and out of the stroller, I've made it through one massive, in-public poo blowout, and I've managed to feed both screaming babies in a random school parking lot without having an anxiety attack. WIN.
Finally beginning to do these things - going out in public like a regular mom - was a big deal, and something I'm pretty proud of. But it's about so much more than just having it together enough to leave the house. Even though we knew when the twins were born that the goal was to leave the hospital eventually and live a normal life, the fact that we did that, that we are doing that, still feels jarring to me. I know how to exist with my babies at home, but taking them out into the world feels so foreign. We are doing something totally normal and completely abnormal at the same time. Nobody looks at us and sees it, nobody senses how much of an accomplishment it is to do this normal stuff. Nobody realizes that being out in the world like this is something that was never guaranteed to us when our babies were born fifteen weeks too soon.
Out in the world, at the doctor's office or the deli counter, I feel really, really proud of these little babies. These little babies, who lived in a hospital for the first three-and-a-half months of their lives. These little babies who never looked like everyone else's babies, who never seemed like they belonged out in the world where the 'normal' babies lived. My babies are PREEMIES. They hang out in the NICU with the nurses, not at the grocery store to be cooed at by the checkout girl. My daughter has a shunt! She sees a neurosurgeon! SHE HAD A GRADE III INTRAVENTRICULAR HEMORRHAGE! She's not a normal baby.
People are fascinated by twins, and they love to stop and ask questions when they see a second baby hiding away at the bottom of the stroller. "Yes, yes, twins," I want to say, "but look at my babies! Aren't they beautiful?! They could have died but they didn't and now here we are in the grocery store! Isn't it amazing?!"
When we were still in the hospital, I remember thinking that I didn't want to become a 'preemie mom'. I was a mom of preemies, sure, but I didn't want that to be who I was. I didn't want my experience as a mother to be limited by the abnormal circumstances of my children's entrance into the world. And while I do still feel like I can find common ground with moms of full-term, typical babies, there is still a very large part of me that feels so very different. A large part that can't let go of what happened. A large part that doesn't want to just yet.
I know one day this will matter less. Madeleine and Reid will grow up and our lives will progress and change, and their prematurity won't be such a defining aspect of who they are. One day, hopefully, it won't be such a definitely aspect of who I am either. But, for now at least, it really, really is.
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Having dinner at an actual restaurant. No big deal.
Friday, June 28, 2013
Milestones
One aspect of parenting I had never considered prior to having kids is how preoccupied I would become with their development. When I was pregnant, I thought (hoped?) that I would have this wonderful relaxed attitude towards the twins' growth, that I would just trust the idea that all babies have their own schedule and that they would eventually get there in their own time. And then I gave birth at twenty-five weeks. (Funny how that changes things.)
When you go into labour that early, one of the first things you are told during that scary blur of time before your babies arrive, is that premature babies are often developmentally delayed, even if nothing else happens to them. It's a consequence of missing all of that extra time in utero, and it's totally reasonable. Then, your babies come out, and everyone reminds you about the chance of delays, and you say, yes, yes, of course, delays, no big deal. But in your head, you think....I really, really hope we will be the exception.
Eventually, the other women in your life with due dates around yours give birth to full-term babies, and you are happy for them, but also sad for you. It's a reminder of what you never had, a reminder of all the awful stuff you had to go through because you never made it that far, and you start to become a little bit obsessed with the milestones. Her little boy is making lots of cooing noises, why isn't Reid? Her little girl is rolling over already, why isn't Madeleine? You ask lots and lots of questions. How much does your little one weigh now? How much does she take at her feedings? Is your baby doing lots of tummy time? Is he smiling or giggling? Does she reach for her toys?
It is of course, completely relevant and irrelevant at the exact same time. Every baby is different, and every baby will approach these tasks in their own way. Reaching a developmental marker late does not mean your baby has a problem. Except when it does. Whenever Madeleine sleeps a lot more than Reid (which is most of the time), or vomits, or is grumpy and cries, I worry that her shunt is malfunctioning (and never that she maybe just likes sleep/ate too much/is just grumpy). When other babies show more progress with motor development, my brain automatically screams CEREBRAL PALSY. When Reid fails to coo or make noise when he tries to giggle, I wonder if maybe his vocal cords were damaged by his ventilator.
And then, just like that, Reid will start gooing and gahhing when you are talking to him like he's been doing it all along. Madeleine will easily roll onto her side on her play mat like it was nothing, even though she never expressed any interest in doing it the day before. And, just when you least expect it, Reid will let out a big, enthusiastic laugh on the change table before he is put down for bed, and your heart will skip a beat.
It is a reminder that, while I did get premature babies, while they had to come out into the world before they were ready, they are still fully-formed, capable little people who have managed to make it through things that even adults would struggle with. Even though I'll probably never stop worrying, I owe it to them to be patient and trust their own abilities. They are really, really good at showing us what they are made of.
When you go into labour that early, one of the first things you are told during that scary blur of time before your babies arrive, is that premature babies are often developmentally delayed, even if nothing else happens to them. It's a consequence of missing all of that extra time in utero, and it's totally reasonable. Then, your babies come out, and everyone reminds you about the chance of delays, and you say, yes, yes, of course, delays, no big deal. But in your head, you think....I really, really hope we will be the exception.
Eventually, the other women in your life with due dates around yours give birth to full-term babies, and you are happy for them, but also sad for you. It's a reminder of what you never had, a reminder of all the awful stuff you had to go through because you never made it that far, and you start to become a little bit obsessed with the milestones. Her little boy is making lots of cooing noises, why isn't Reid? Her little girl is rolling over already, why isn't Madeleine? You ask lots and lots of questions. How much does your little one weigh now? How much does she take at her feedings? Is your baby doing lots of tummy time? Is he smiling or giggling? Does she reach for her toys?
It is of course, completely relevant and irrelevant at the exact same time. Every baby is different, and every baby will approach these tasks in their own way. Reaching a developmental marker late does not mean your baby has a problem. Except when it does. Whenever Madeleine sleeps a lot more than Reid (which is most of the time), or vomits, or is grumpy and cries, I worry that her shunt is malfunctioning (and never that she maybe just likes sleep/ate too much/is just grumpy). When other babies show more progress with motor development, my brain automatically screams CEREBRAL PALSY. When Reid fails to coo or make noise when he tries to giggle, I wonder if maybe his vocal cords were damaged by his ventilator.
And then, just like that, Reid will start gooing and gahhing when you are talking to him like he's been doing it all along. Madeleine will easily roll onto her side on her play mat like it was nothing, even though she never expressed any interest in doing it the day before. And, just when you least expect it, Reid will let out a big, enthusiastic laugh on the change table before he is put down for bed, and your heart will skip a beat.
It is a reminder that, while I did get premature babies, while they had to come out into the world before they were ready, they are still fully-formed, capable little people who have managed to make it through things that even adults would struggle with. Even though I'll probably never stop worrying, I owe it to them to be patient and trust their own abilities. They are really, really good at showing us what they are made of.
Saturday, March 16, 2013
Thirty-Nine Weeks
Well, it is clear at this point that I've become a little bit useless at keeping this blog updated! But since so much has happened in the past month (and since I currently have more than five minutes at home to sit down and actually write about it), I definitely wanted to get it all up here.
Big Things That Have Happened Since A Month Ago:
- Madeleine had a second surgery, to remove the temporary shunt and insert a permanent shunt that drains into her belly
- Reid has joined his sister off of breathing support, and they are now breathing normal room air with their lungs like proper full term babies
- Reid and Madeleine have begun to work on oral feeds, which is one of the last big steps before coming home
- We have been moved into one big twin room, which means we no longer have to go back and forth between two separate rooms
- The twins are now one day short of 39 weeks gestation, and are practically gigantic given their birth weights as their official due date (March 24) nears.
The real major difference however is just how 'normal' the babies have become. When we started on our NICU journey at 25 weeks, it felt impossible that Reid and Madeleine would ever not be teeny, tiny, odd-looking prems lying in incubators and hooked up to ventilators. Now we are at the point in the babies' development where they are big, alert, breathing, and not really requiring much direct medical care at all. They cry loudly, are hungry all the time, make funny faces, have big poops in their diapers, wear cute outfits, and snuggle in for cuddles. In other words, they're basically just...babies.
As we transition into to last stage of their NICU journey, the demands being placed on us are also starting to increase. Since the babies need to learn to take their feeds orally in order to come home (as opposed to getting their feeds from their feeding tubes like they've been doing), and since I am hoping to breastfeed the twins as much as possible once they come home, I need to be at the hospital pretty much all the time. Right now, I aim to arrive around 10:30am to prepare for Reid's 11am feed, and try to leave after Madeleine's 9pm feed at night. It is a long day to say the least, and I am chomping at the bit to be able to do all of this from the comfort of our own home instead of the hospital! But while we are starting to slowly see the light at the end of the tunnel, it will still probably be at least another month before coming home becomes a reality.
The other big change is the difference in the way we are thinking about the babies' progress. We are so glad to be coming out of the stage where everything was so much more precarious - when we were more worried about their breathing or when we contemplating what would happen if Madeleine needed surgery. Day-to-day the updates are pretty much happy and uneventful now, but what lies ahead for us is still a giant question mark. The answer to the often-asked, "How are the babies?" is "Ok...ish". They're well right now, but they might not be in the future. Good and bad. Who knows?
Ultimately though, even with all the stressful bad stuff, and the infinite what-ifs (especially for Madeleine), I can't help but feel that I must be the luckiest mom that ever existed. I don't know what it's going to be like to take them home, I don't know if I'll ever not be exhausted again for the rest of my life, I don't know if I'll end up with one (or two?) mildly/moderately/severely disabled child/children, if everything might end up being one big forever-long struggle. But what I do know for sure is that no one else in the world gets to be Madeleine and Reid's mom. And being their mom is pretty much the best thing ever.
Big Things That Have Happened Since A Month Ago:
- Madeleine had a second surgery, to remove the temporary shunt and insert a permanent shunt that drains into her belly
- Reid has joined his sister off of breathing support, and they are now breathing normal room air with their lungs like proper full term babies
- Reid and Madeleine have begun to work on oral feeds, which is one of the last big steps before coming home
- We have been moved into one big twin room, which means we no longer have to go back and forth between two separate rooms
- The twins are now one day short of 39 weeks gestation, and are practically gigantic given their birth weights as their official due date (March 24) nears.
The real major difference however is just how 'normal' the babies have become. When we started on our NICU journey at 25 weeks, it felt impossible that Reid and Madeleine would ever not be teeny, tiny, odd-looking prems lying in incubators and hooked up to ventilators. Now we are at the point in the babies' development where they are big, alert, breathing, and not really requiring much direct medical care at all. They cry loudly, are hungry all the time, make funny faces, have big poops in their diapers, wear cute outfits, and snuggle in for cuddles. In other words, they're basically just...babies.
As we transition into to last stage of their NICU journey, the demands being placed on us are also starting to increase. Since the babies need to learn to take their feeds orally in order to come home (as opposed to getting their feeds from their feeding tubes like they've been doing), and since I am hoping to breastfeed the twins as much as possible once they come home, I need to be at the hospital pretty much all the time. Right now, I aim to arrive around 10:30am to prepare for Reid's 11am feed, and try to leave after Madeleine's 9pm feed at night. It is a long day to say the least, and I am chomping at the bit to be able to do all of this from the comfort of our own home instead of the hospital! But while we are starting to slowly see the light at the end of the tunnel, it will still probably be at least another month before coming home becomes a reality.
The other big change is the difference in the way we are thinking about the babies' progress. We are so glad to be coming out of the stage where everything was so much more precarious - when we were more worried about their breathing or when we contemplating what would happen if Madeleine needed surgery. Day-to-day the updates are pretty much happy and uneventful now, but what lies ahead for us is still a giant question mark. The answer to the often-asked, "How are the babies?" is "Ok...ish". They're well right now, but they might not be in the future. Good and bad. Who knows?
Ultimately though, even with all the stressful bad stuff, and the infinite what-ifs (especially for Madeleine), I can't help but feel that I must be the luckiest mom that ever existed. I don't know what it's going to be like to take them home, I don't know if I'll ever not be exhausted again for the rest of my life, I don't know if I'll end up with one (or two?) mildly/moderately/severely disabled child/children, if everything might end up being one big forever-long struggle. But what I do know for sure is that no one else in the world gets to be Madeleine and Reid's mom. And being their mom is pretty much the best thing ever.
Thursday, February 7, 2013
Bad News/Good News
Bad News: Madeleine's most recent head ultrasound showed that she has developed a new bleed in one of her ventricles and in part of her brain tissue. Possibly a result of the shunt surgery, possibly a result of the pressure change in the blood vessels now that the swelling is going down. Not quite sure what this all means yet, but Madeleine had an MRI this morning and we should find out the results tomorrow. Very sad and frustrating.
Good News: Madeleine no longer needs any assistance to breathe. This was a big shock, since she had only recently transitioned on high-flow oxygen (oxygen plus pressure, but less pressure than CPAP). I assumed she'd still need to be on high flow for a while, but Madeleine had other ideas and let everyone know that she was so over the breathing machines. Can't believe my little girl is breathing like a normal baby now.
Good News: Reid also decided to ditch his CPAP and give high-flow a try.
Bad News: He only lasted a few hours. I felt so bad for Reid when the respiratory therapist decided it was time to put his CPAP helmet back on - Reid is so big now (4lbs 9oz) that he gets very frustrated having all that equipment on his head. It's pretty clear that he really wants to be done with CPAP, but for now, he still needs a little extra help.
Good News Best Ever News: We were finally able to get the twins together for a cuddle! We knew all along that this could only happen once at least one baby was off their breathing apparatus, so once I heard that Madeleine was breathing on her own, I knew we had to try and make it happen. Even though Matt and I had always been looking forward to the day we could have both babies together, it was obvious that neither of us was quite ready for it. Having the babies in different rooms had somehow made it feel like we only really ever had one baby - we've only really ever had to think about or care for one baby at a time. Holding them both made it sink in that there really are two of them, and we really will have two babies at all times for the rest of our lives.
As excited as we were to hold both babies at once, we were equally as excited to see how they would react to each other. Up until two months ago, Reid and Madeleine had spent all their time cramped up against each other in my belly. At the same time, and unlike most twins, they had also spent the last eight weeks completely separated. I guess Reid didn't exactly mind the alone time though, as the first thing he did when his sister came in the room was turn his head away! Madeleine promptly grabbed a hold of Reid's hand once we snuggled her in with us though, which we'd like to consider was a deliberate sign of love and goodwill towards her brother (though it was probably much more a product of her infant reflexes). That was pretty much the end of their interaction however, as both babies promptly conked out for the next hour before we had to put them back in their beds.
Good News: Madeleine no longer needs any assistance to breathe. This was a big shock, since she had only recently transitioned on high-flow oxygen (oxygen plus pressure, but less pressure than CPAP). I assumed she'd still need to be on high flow for a while, but Madeleine had other ideas and let everyone know that she was so over the breathing machines. Can't believe my little girl is breathing like a normal baby now.
Good News: Reid also decided to ditch his CPAP and give high-flow a try.
Bad News: He only lasted a few hours. I felt so bad for Reid when the respiratory therapist decided it was time to put his CPAP helmet back on - Reid is so big now (4lbs 9oz) that he gets very frustrated having all that equipment on his head. It's pretty clear that he really wants to be done with CPAP, but for now, he still needs a little extra help.
As excited as we were to hold both babies at once, we were equally as excited to see how they would react to each other. Up until two months ago, Reid and Madeleine had spent all their time cramped up against each other in my belly. At the same time, and unlike most twins, they had also spent the last eight weeks completely separated. I guess Reid didn't exactly mind the alone time though, as the first thing he did when his sister came in the room was turn his head away! Madeleine promptly grabbed a hold of Reid's hand once we snuggled her in with us though, which we'd like to consider was a deliberate sign of love and goodwill towards her brother (though it was probably much more a product of her infant reflexes). That was pretty much the end of their interaction however, as both babies promptly conked out for the next hour before we had to put them back in their beds.
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.
Friday, January 18, 2013
Bad News Comes In Twos
After riding a wave of 'ups' over the past week, it is now apparently time for us to go back to experiencing some 'downs'. Though we've all been rooting for him, Reid unfortunately had to be reintubated Thursday afternoon, as he was completed tuckered out from five long days of breathing on his own. On Wednesday during my visit, Reid stopped breathing and actually needed to be bagged manually by the nurse to get his oxygen back up, which was a clue that he was starting to have trouble. It happened again a few more times yesterday, which led to him being put back on the ventilator . While we knew that chances were high he would probably need to revisit the vent at some point (Madeleine also had to be reintubated for a while after she got tuckered out from her first CPAP stint), and while it is still pretty great that he was able to come off of the ventilator for a little while, it was still a rather sad setback.
As if that weren't enough of a wallop, we also got news yesterday after Madeleine's weekly head ultrasound that her ventricle size has actually started increasing again by 1-2mm. This was definitely not something we saw coming at all, given that her last ultrasound showed a decrease, which seemingly suggested that things were getting better. We had a good chat with Madeleine's doctor today, and the current sense is that there isn't enough good data yet to figure out what's really going on. Was the latest ultrasound incorrect in showing an increase? Or was last week's encouraging ultrasound the incorrect one? Could the measurements actually be fluctuating and maybe still need to level out? Could the CPAP helmet be throwing off her head growth? At this point, it looks like the only option is to wait and see what happens, and go back to praying that the numbers start to go down again. If things don't improve, surgery might be on the horizon again, and either way we have to also consider what this could mean for Madeleine developmentally as she grows, given that her brain tissue may have been damaged.
Even though this is all feels pretty grim, and while we won't know for quite a while what we're really in for in terms of the twins' futures, we were reminded today by the neonatologist that there is still a lot that we can do to try and influence the babies' outcomes - and right now, that namely means lots of loving cuddles. That was music to our ears of course, and both Reid and Madeleine came out of their incubators for snuggles today (Madeleine actually got two cuddles, but shh, don't tell Reid). We hadn't really realized just how valuable skin-to-skin time actually is to the babies' growth and well-being, but now we will definitely be making a point to clock as much quality cuddle time as possible.
[caption id="attachment_374" align="aligncenter" width="870"]
I feel the same way, little one![/caption]
As if that weren't enough of a wallop, we also got news yesterday after Madeleine's weekly head ultrasound that her ventricle size has actually started increasing again by 1-2mm. This was definitely not something we saw coming at all, given that her last ultrasound showed a decrease, which seemingly suggested that things were getting better. We had a good chat with Madeleine's doctor today, and the current sense is that there isn't enough good data yet to figure out what's really going on. Was the latest ultrasound incorrect in showing an increase? Or was last week's encouraging ultrasound the incorrect one? Could the measurements actually be fluctuating and maybe still need to level out? Could the CPAP helmet be throwing off her head growth? At this point, it looks like the only option is to wait and see what happens, and go back to praying that the numbers start to go down again. If things don't improve, surgery might be on the horizon again, and either way we have to also consider what this could mean for Madeleine developmentally as she grows, given that her brain tissue may have been damaged.
Even though this is all feels pretty grim, and while we won't know for quite a while what we're really in for in terms of the twins' futures, we were reminded today by the neonatologist that there is still a lot that we can do to try and influence the babies' outcomes - and right now, that namely means lots of loving cuddles. That was music to our ears of course, and both Reid and Madeleine came out of their incubators for snuggles today (Madeleine actually got two cuddles, but shh, don't tell Reid). We hadn't really realized just how valuable skin-to-skin time actually is to the babies' growth and well-being, but now we will definitely be making a point to clock as much quality cuddle time as possible.
[caption id="attachment_374" align="aligncenter" width="870"]
I feel the same way, little one![/caption]
Wednesday, January 9, 2013
More About Madeleine
Although I was over the moon to hear from Matt that the results from Madeleine's head ultrasound were good, I was eager to speak to her doctor myself to get the whole story first-hand. And it looks like the whole story is basically that everything we were hoping for is pretty much happening.
Based on the head circumference measurements that had been taken by Madeleine's nurses prior to her test, we were kind of expecting to hear at best that the ventricles were staying more or less the same size. According to the ultrasound though, not only have they actually decreased, but they have decreased fairly significantly! As a result, it is looking like Madeleine's brain may indeed be in the process of breaking down the clot on its own - the best case scenario option by far. According to Madeleine's doctor, this means that the ventricles will most likely continue to decrease with each weekly ultrasound, and that chances are good that she won't be requiring a shunt after all! While I suppose that technically we won't know exactly how her brain is doing until much later on when any developmental delays would start to become apparent, it is a massive relief to know that my little girl has likely avoided surgery. (Romains 1, Blood Clot 0).
In other exciting Madeleine news, our tiny warrior has finally surpassed the kilo mark! To celebrate, she took the opportunity to show off her impressive breathing skills to her very proud mother. Throughout the day, Madeleine's nurses take off her CPAP gear for a few minutes to clean her up and give her head and face and break. I hadn't actually seen this happen before, and it was a huge shock to see her whole, unobstructed face! There she was, eyes wide open, no breathing tubes or masks, using her lungs to breathe on her own. It was pretty amazing! In fact, it was the first time she really started to look like a "normal" baby, without all the wires and tubes and medical paraphernalia. While I stood there in awe at my little girl, taking breaths on her own like it's no big deal, Madeleine's nurse wisely suggested I grab my camera and take a picture.
[caption id="" align="aligncenter" width="870"]
CPAP free. No big deal.[/caption]
As if that weren't enough to make my entire day, Madeleine and I got to have another cuddle! It makes me a little sad that Madeleine has been able to have so many snuggles while her brother has only had two, but at the same time, I am so grateful to have the chance to spend so much time holding my girl and getting to know her. When it became clear during bed rest that the babies would likely be born very early, part of me worried about whether we'd be able to bond the same way that most mums and babes do. Their birth was quick and scary, it was a few hours before I could see them for the first time, and much longer before I could touch them. Once I was discharged, it broke my heart to think of all the hours we'd be spending apart, all the times they would cry that I wouldn't be there to comfort them, or even know that it was happening.
It still makes me sad to think about, but cuddling with Madeleine gives me hope that maybe I don't have to worry too much. Even though I wish I could do more for the babies, even though I wish they were at home like normal newborns, there is always that moment when the nurse places Madeleine on my chest and she snuggles right in, as if to say, "oh good, there you are." I thought it might take time for us to feel comfortable together, that it might feel awkward at first the way I always feel kind of awkward holding other people's babies, but sitting with Madeleine and Reid, feeling them settle and watching the numbers on their monitors stabilize, feels so different. What I thought would be getting acquainted is really a reunion. My babies and I, together again.
Based on the head circumference measurements that had been taken by Madeleine's nurses prior to her test, we were kind of expecting to hear at best that the ventricles were staying more or less the same size. According to the ultrasound though, not only have they actually decreased, but they have decreased fairly significantly! As a result, it is looking like Madeleine's brain may indeed be in the process of breaking down the clot on its own - the best case scenario option by far. According to Madeleine's doctor, this means that the ventricles will most likely continue to decrease with each weekly ultrasound, and that chances are good that she won't be requiring a shunt after all! While I suppose that technically we won't know exactly how her brain is doing until much later on when any developmental delays would start to become apparent, it is a massive relief to know that my little girl has likely avoided surgery. (Romains 1, Blood Clot 0).
In other exciting Madeleine news, our tiny warrior has finally surpassed the kilo mark! To celebrate, she took the opportunity to show off her impressive breathing skills to her very proud mother. Throughout the day, Madeleine's nurses take off her CPAP gear for a few minutes to clean her up and give her head and face and break. I hadn't actually seen this happen before, and it was a huge shock to see her whole, unobstructed face! There she was, eyes wide open, no breathing tubes or masks, using her lungs to breathe on her own. It was pretty amazing! In fact, it was the first time she really started to look like a "normal" baby, without all the wires and tubes and medical paraphernalia. While I stood there in awe at my little girl, taking breaths on her own like it's no big deal, Madeleine's nurse wisely suggested I grab my camera and take a picture.
[caption id="" align="aligncenter" width="870"]
CPAP free. No big deal.[/caption]As if that weren't enough to make my entire day, Madeleine and I got to have another cuddle! It makes me a little sad that Madeleine has been able to have so many snuggles while her brother has only had two, but at the same time, I am so grateful to have the chance to spend so much time holding my girl and getting to know her. When it became clear during bed rest that the babies would likely be born very early, part of me worried about whether we'd be able to bond the same way that most mums and babes do. Their birth was quick and scary, it was a few hours before I could see them for the first time, and much longer before I could touch them. Once I was discharged, it broke my heart to think of all the hours we'd be spending apart, all the times they would cry that I wouldn't be there to comfort them, or even know that it was happening.
It still makes me sad to think about, but cuddling with Madeleine gives me hope that maybe I don't have to worry too much. Even though I wish I could do more for the babies, even though I wish they were at home like normal newborns, there is always that moment when the nurse places Madeleine on my chest and she snuggles right in, as if to say, "oh good, there you are." I thought it might take time for us to feel comfortable together, that it might feel awkward at first the way I always feel kind of awkward holding other people's babies, but sitting with Madeleine and Reid, feeling them settle and watching the numbers on their monitors stabilize, feels so different. What I thought would be getting acquainted is really a reunion. My babies and I, together again.
Saturday, January 5, 2013
Madeleine's Brain
Despite being born super early, Madeleine has done a pretty awesome job of being alive. Our little warrior girl came off of her ventilator at a few days old, has been eating like a champ since day one, and has generally just been spending her days being the tiny rock star that she is. We have now learned though, that Madeleine is having some trouble with her brain.A bleed that occurred in Madeleine's brain early on resulted in a clot that is now basically clogging up the flow of cerebrospinal fluid in the ventricles of her brain and spine. Her ventricles are increasing in size as a result, and although her little baby head is capable of expanding somewhat to accommodate, she may require surgery if the ventricles continue to dilate. Since she is such a tiny little one (not yet even a kilo), this is super bad news.
On Monday, Madeleine will be having a follow-up head ultrasound to see what is happening, and whether her ventricles are getting larger. Of course, we are hoping that our sweet girl will be able to avoid surgery (or any other invasive procedures). We are trying to be as optimistic as possible, but this is her first major issue, and it feels pretty devastating. We would appreciate your thoughts and prayers for our beautiful girl.
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