I realize, unlike Olivia and the boys, I haven't been updating much on my pregnancy with Payton as a whole. Considering this is the one part of Payton's journey that will be normal (and I'm committed to remembering) I've been remiss in updating the normal parts that I want to hold on to so dear (and hopefully share with her so she knows that there were good/normal things amongst the struggles).
Thus far its been a slightly harder pregnancy than Olivia (I think because I'm 2 years older) and my body seems tired (that's what being an old pregnant woman does and at 37 I'm no spring chicken). I have ached earlier gestation wise and I feel much less mobile (it reminds me of how I felt with Livy at 38weeks instead of 29w).
Still, Payton has been the one baby that has kicked the earliest and the strongest and while she sleeps more than Olivia did (Livy used to kick sometimes up to 2 hrs straight) she is definitely a mover - when she does move, she moves alot.
Her favourite time to put on a show is usually around 9-10 at night so it stands to reason we have another night owl in our midst.
Livy still hasn't grasped the "baby in the tummy" concept (unless she has plans on beating her little sister up fairly early) as she pushes, pinches and even bits my proturding belly button. Still, if I ask her where the baby is (or where baby Payton is) she'll point (or push) at my stomach. Still, I sometimes wonder if she looks at my belly thinking I ate a baby for breakfast.
We continue to measure large though I also measured a few weeks ahead with Livy. I hope that despite the ultrasound measurement that Payton is, like her sister, larger than the average bear. The ultrasound definitely has her measured withing normal range, but usually a half to a week behind in most measurements. Still, with her abdominal contents in her chest, its safe to assume that some of the measurements are a bit off (ie they measure the circumference of her abdomen as one measurement).
Life as we know it continues as normal and we are starting to prepare for the arrival of baby Payton by getting a second room together. Poor Payton will not have her own room. Instead when she comes home she'll board with Mom and Dad in their closet (we'll make it a really nice closet I promise). This will allow us to have her close at hand if she needs us but give her the room needed in the event she comes home with artificial breathing/feeding support.
Once Payton is ready to move out of our room, her and Olivia will share a bedroom.
The second bedroom we're preparing is intended to be a play room for the girls (and so we can get back our much desired living room). We're keeping the dinosaur theme we started with with Olivia and will be added more touches to make it a truley fun place to hang out. We'll be sure to update with photos as we progress with the room.
On another note, the weather here is finally starting to warm and we have been full speed ahead with yard work. One project after another and slowly aiming for Dwayne's dream - a fully concrete yard.
On another note, Dwayne's 40th birthday is nearing and we'll be gearing up for a small celebration (his real present was the riding trip to Spain but he's trying to wrangle a Canucks ticket now that they're in the final round for the Stanley Cup).
As usual, life is pretty normal and I want to come back here and remember this normal. This calm before the storm. Not for any other reason but because I want to recognize it when we are there once again - and we will be. Even healthy babies create chaos and a new normal needs to be established.
It may take more time that time, but eventually, baby Payton (hiccups and all) will be normal for us and this blog gives us a water mark for how far we will have come.
Monday, May 30, 2011
The grass isn't greener
I've been busy reading a number of other blogs with families dealing with a CDH child (or currently pregnant with a CDH baby) in an attempt to understand the various routes Payton may travel upon delivery.
There are some knowns (at least we hope so):
1. She will go to the NICU immediately after delivery
2. She will be intubated.
3. She will have an IV placed to feed
4. She will be sedated/paralyzed
5. She will have surgery (pending a favourable outcome of the above).
What we don't know is the degree and impact that the above will have on her and how well she'll do. We just for now know the basics.
After reading the many stories out there you really start to realize that even the best case scenerios are heartbreaking and tragic. Any person who has held a new born (if they can remember how delicate and fragile they were/are) will somewhat appreciate how undesirable this whole situation is and how wrong it seems to put such a tiny thing through such a huge ordeal.
But, as mentioned before, there is no going back...There is no alternative strategy to fixing the problem and even though we don't like the method of 'fixing' we know its what we have to do.
We meet with the surgeons next week (or we did until we recently got the call that they needed to bump the appointment back another week). From there we'll have a better idea of how they will possibly fix Payton. Though the size of the hernia is a big factor in deciding her ultimate surgery, we will get a better idea of how they tackle such situations.
We'll also learn about the complications/effects the surgery will have on her (swelling, fluid buildup in a chest with a large cavity where her lungs are supposed to be). We'll have an idea of how steady his hands are (yes, I'm interviewing this surgeon just like I interviewed the doctor who did our amnio - "how much coffee do you drink and let's see how steady your hands are").
So, while we enter the beginning of the end of this pregnancy, and while I scour the internet reading about others there's nothing about their situation I really 'want'. That said, there are some amazing fighters out there and it does give me a lot of hope as to what is possible and what kind of strength and determination such a small little one really has.
There are some knowns (at least we hope so):
1. She will go to the NICU immediately after delivery
2. She will be intubated.
3. She will have an IV placed to feed
4. She will be sedated/paralyzed
5. She will have surgery (pending a favourable outcome of the above).
What we don't know is the degree and impact that the above will have on her and how well she'll do. We just for now know the basics.
After reading the many stories out there you really start to realize that even the best case scenerios are heartbreaking and tragic. Any person who has held a new born (if they can remember how delicate and fragile they were/are) will somewhat appreciate how undesirable this whole situation is and how wrong it seems to put such a tiny thing through such a huge ordeal.
But, as mentioned before, there is no going back...There is no alternative strategy to fixing the problem and even though we don't like the method of 'fixing' we know its what we have to do.
We meet with the surgeons next week (or we did until we recently got the call that they needed to bump the appointment back another week). From there we'll have a better idea of how they will possibly fix Payton. Though the size of the hernia is a big factor in deciding her ultimate surgery, we will get a better idea of how they tackle such situations.
We'll also learn about the complications/effects the surgery will have on her (swelling, fluid buildup in a chest with a large cavity where her lungs are supposed to be). We'll have an idea of how steady his hands are (yes, I'm interviewing this surgeon just like I interviewed the doctor who did our amnio - "how much coffee do you drink and let's see how steady your hands are").
So, while we enter the beginning of the end of this pregnancy, and while I scour the internet reading about others there's nothing about their situation I really 'want'. That said, there are some amazing fighters out there and it does give me a lot of hope as to what is possible and what kind of strength and determination such a small little one really has.
Thursday, May 26, 2011
Mental epiphany to keep me going
I didn't have enough sleep yesterday.
Perhaps 10 days of Dwayne being out of town has caught up to me and the little bit of lack of sleep crept up on me so I didn't even notice it until I was lying in bed last night thinking about baby Payton.
The reason I knew I didn't have enough sleep is because the doubts crept in along with the panic, the pain, the why's and all the rest of the negative thoughts that come with such a situation. "How am I going to be strong enough to do this". 'This' being watch our baby going through pokes, surgeries, tests, suffering and weeks of not being held like a baby is supposed to be. Of course, those concerns are always accompanied by the knowledge that the worst can happen too - that we once again have to say good-bye to a child.
As I laid there in the dark wondering where I was going to summon my strength to ride this rollar coaster again I realized (here's the part where you learn about my epiphany) that I don't have to be strong. And I think that word is too often used to label people when they stuggle with huge life issues. As if we have a choice - I've always attributed strength as choosing to go the difficult route. We don't have a choice, someone signed us up without our choosing and we only found out later that it was a binding contract with no termination clause. So, we do what we have to.
Anyway, back to my epiphany. I don't have to be strong. I can cry, I can be mad, I can curl up in a little ball (not right now since my belly is too big) and sob like the little baby I'm supposed to be protecting from harm (or maybe not since I don't think babies actually cry like I want to).
I'm allowed to say - I don't want to do this (even though I know I have to, it doesn't mean I want to). I realized that its ok to let go and not wear a smile showing the world that I think things are going to be ok. If I really think about it, of course they'll be 'ok'. I mean, in a hundred years, this struggle, our previous losses - none of it is really going to matter. So if I take that down on a more micro level, no matter what the future brings for us and baby Payton, time will allow us to partially heal (experience shows you never really fully heal) and life will go on...regardless of what happens.
And while life will/may SUCK for a while, we will survive. One foot in front of the other. But for the record, I'm not promising to do it with grace, style or STRENGTH.
Perhaps 10 days of Dwayne being out of town has caught up to me and the little bit of lack of sleep crept up on me so I didn't even notice it until I was lying in bed last night thinking about baby Payton.
The reason I knew I didn't have enough sleep is because the doubts crept in along with the panic, the pain, the why's and all the rest of the negative thoughts that come with such a situation. "How am I going to be strong enough to do this". 'This' being watch our baby going through pokes, surgeries, tests, suffering and weeks of not being held like a baby is supposed to be. Of course, those concerns are always accompanied by the knowledge that the worst can happen too - that we once again have to say good-bye to a child.
As I laid there in the dark wondering where I was going to summon my strength to ride this rollar coaster again I realized (here's the part where you learn about my epiphany) that I don't have to be strong. And I think that word is too often used to label people when they stuggle with huge life issues. As if we have a choice - I've always attributed strength as choosing to go the difficult route. We don't have a choice, someone signed us up without our choosing and we only found out later that it was a binding contract with no termination clause. So, we do what we have to.
Anyway, back to my epiphany. I don't have to be strong. I can cry, I can be mad, I can curl up in a little ball (not right now since my belly is too big) and sob like the little baby I'm supposed to be protecting from harm (or maybe not since I don't think babies actually cry like I want to).
I'm allowed to say - I don't want to do this (even though I know I have to, it doesn't mean I want to). I realized that its ok to let go and not wear a smile showing the world that I think things are going to be ok. If I really think about it, of course they'll be 'ok'. I mean, in a hundred years, this struggle, our previous losses - none of it is really going to matter. So if I take that down on a more micro level, no matter what the future brings for us and baby Payton, time will allow us to partially heal (experience shows you never really fully heal) and life will go on...regardless of what happens.
And while life will/may SUCK for a while, we will survive. One foot in front of the other. But for the record, I'm not promising to do it with grace, style or STRENGTH.
Tuesday, May 24, 2011
Another 'Boring' Appointment - 28w3d
We like these - the boring ones where they tell us that nothings changed and that there are no 'new' fears to be added to our already 'interesting' situation.
This morning (at 28weeks and 3 days) we once again had an ultrasound and a follow up meeting with Maternal Fetal Medicine (the peri's). We once again met with Dr. Butler who I think has become our favourite of the peri's that we've seen. Not that anyone else has been sub-par, but he's been soooo good about going above and beyond to ensure we feel like we have the whole story. Even going so far as to pull up the ultrasound photos and review them with us and ask if we have any questions about anything.
So, as of today, nothing's changed with baby Payton. Her growth is good and there's no extra amniotic fluid - one of the potential complications with CDH potentially signaling that she's not swallowing normally which would potentially indicate a digestive tract problem and with all her digestive system pushed up in the wrong direction, this is something that can occur. Of course, the not swallowing part can be fixed (or rather, if she doesn't swallow it won't impact her too much physically), the problem arises when the amniotic sac expands and fills past its capacity possibly causing premature rupture of the membranes PROM - this of course being a topic we're well versed on.
Still, as we advance futher and further in the pregnancy, the risk of PROM due to increased amniotic fluid becomes less of an issue (ie rupturing at 36 weeks won't be the end of the world, as long as I make it to the hospital in time).
We are still dealing with Placental Previa though we found out today that begining around 27 weeks, the bottom of the uterus is the portion that 'really' begins to stretch (up till now, the top of the uterus has been the biggest portion stretched) so we have a really good chance of the Placental Previa correcting itself over the next few weeks (which will allow for a really good chance of a vaginal birth - better for baby and the little lung volume she has, and also better for mom as the recovery time will be easier allowing for earlier time spent hovering in the NICU).
We have also hit the point where they want us to come in every two weeks for ultrasounds and follow up appointments. I'm assuming because this is the portion of the pregnancy when anything can happen much quicker than would be seen previously. There's no upside to monitoring in determining Payton's survival rates (as mentioned, that was best determined during the crucial lung development stage between 18-24 weeks). But, there are things that can be done this late in the pregnancy that may/can prolong the pregnancy for an extra crucial few weeks if they do crop up.
In the next few weeks we'll also begin doing non-stress tests with Payton. I'm not sure what this entails exactly as our previous high risk pregnancy never developed this far, and the one pregnancy that did was textbook perfect - no sress test required.
Alas, we are starting to enter into the point of the pregnancy where our medical updates will be more frequent though hopefully just as boring as today's have been.
For now, I continue to read other CDH babies stories to learn about the NICU and what our expectations will entail once we reach that stage in our journey.
This morning (at 28weeks and 3 days) we once again had an ultrasound and a follow up meeting with Maternal Fetal Medicine (the peri's). We once again met with Dr. Butler who I think has become our favourite of the peri's that we've seen. Not that anyone else has been sub-par, but he's been soooo good about going above and beyond to ensure we feel like we have the whole story. Even going so far as to pull up the ultrasound photos and review them with us and ask if we have any questions about anything.
So, as of today, nothing's changed with baby Payton. Her growth is good and there's no extra amniotic fluid - one of the potential complications with CDH potentially signaling that she's not swallowing normally which would potentially indicate a digestive tract problem and with all her digestive system pushed up in the wrong direction, this is something that can occur. Of course, the not swallowing part can be fixed (or rather, if she doesn't swallow it won't impact her too much physically), the problem arises when the amniotic sac expands and fills past its capacity possibly causing premature rupture of the membranes PROM - this of course being a topic we're well versed on.
Still, as we advance futher and further in the pregnancy, the risk of PROM due to increased amniotic fluid becomes less of an issue (ie rupturing at 36 weeks won't be the end of the world, as long as I make it to the hospital in time).
We are still dealing with Placental Previa though we found out today that begining around 27 weeks, the bottom of the uterus is the portion that 'really' begins to stretch (up till now, the top of the uterus has been the biggest portion stretched) so we have a really good chance of the Placental Previa correcting itself over the next few weeks (which will allow for a really good chance of a vaginal birth - better for baby and the little lung volume she has, and also better for mom as the recovery time will be easier allowing for earlier time spent hovering in the NICU).
We have also hit the point where they want us to come in every two weeks for ultrasounds and follow up appointments. I'm assuming because this is the portion of the pregnancy when anything can happen much quicker than would be seen previously. There's no upside to monitoring in determining Payton's survival rates (as mentioned, that was best determined during the crucial lung development stage between 18-24 weeks). But, there are things that can be done this late in the pregnancy that may/can prolong the pregnancy for an extra crucial few weeks if they do crop up.
In the next few weeks we'll also begin doing non-stress tests with Payton. I'm not sure what this entails exactly as our previous high risk pregnancy never developed this far, and the one pregnancy that did was textbook perfect - no sress test required.
Alas, we are starting to enter into the point of the pregnancy where our medical updates will be more frequent though hopefully just as boring as today's have been.
For now, I continue to read other CDH babies stories to learn about the NICU and what our expectations will entail once we reach that stage in our journey.
Saturday, May 21, 2011
We keep trying to keep up with Livy as she grows by leaps and bounds. It never ceases to amaze me how many words she has and how she uses them. Today driving she pointed out some smoke (I didn't see it, she just said "see smoke"). I made the comment that I didn't see it and that was followed by "I think so".
She's also becoming a little dare devil on her bike. She's copying her older cousin Michael as he scoots and rides with ease, lifting his legs. She's now doing it (though for a much shorter duration) and tomorrow I'll get a video (if its not raining too bad) on here to see how much she's improved.
She was also chatting on the phone tonight with Dwayne who's been away the last 6 days. While she will often have a conversation on the phone with no one there, once she hears a voice she always stops talking and listens. Today she chatted with "Daddy" for a while marking another milestone.
Here's a quick photo of Livy hanging with Dinosaur Bob while they both watch Dinosaur Train - taken just after speaking on the phone with Daddy.
She's also becoming a little dare devil on her bike. She's copying her older cousin Michael as he scoots and rides with ease, lifting his legs. She's now doing it (though for a much shorter duration) and tomorrow I'll get a video (if its not raining too bad) on here to see how much she's improved.
She was also chatting on the phone tonight with Dwayne who's been away the last 6 days. While she will often have a conversation on the phone with no one there, once she hears a voice she always stops talking and listens. Today she chatted with "Daddy" for a while marking another milestone.
Here's a quick photo of Livy hanging with Dinosaur Bob while they both watch Dinosaur Train - taken just after speaking on the phone with Daddy.
Thursday, May 19, 2011
She has hair!!
Just a fun photo to share of Olivia from this morning.
Each day her hair grows a little bit more and more and this photo is proof that one day we will have hair (probably right when she's old enough to demand we cut it all off).
On another note, Livy's vocabulary has grown by leaps and bounds. Wilma made a list of many of the words she can remember Livy using (English and Filipino) - and there's so many more.
Dwayne's favourite is when she says "lollipop". Rest assured we aren't giving her them, it just comes up in the story "The Very Hungry Catepillar".
I'll scan the list Wilma made just so we have it here for us to recollect in years to come how smart she 'was' for when she's failing out of calculus.
Each day her hair grows a little bit more and more and this photo is proof that one day we will have hair (probably right when she's old enough to demand we cut it all off).
On another note, Livy's vocabulary has grown by leaps and bounds. Wilma made a list of many of the words she can remember Livy using (English and Filipino) - and there's so many more.
Dwayne's favourite is when she says "lollipop". Rest assured we aren't giving her them, it just comes up in the story "The Very Hungry Catepillar".
I'll scan the list Wilma made just so we have it here for us to recollect in years to come how smart she 'was' for when she's failing out of calculus.
Tuesday, May 17, 2011
1st Milestone Achieved!!
We did it, we hit our 1st major milestone since recieving the news that baby Payton has a diaphragmatic hernia.
Its not a medical or technical milestone - rather a personal one.
It has officially been 7 weeks and 5 days since we learned about Payton's diaphragm defect. That's the same amount of time I was on bed rest with the boys prior to labour setting in. Its big for me to know that we got past that point but also, that I was able to stay sane once again for that long while faced with a high risk pregnancy.
Apparently my sanity is more anchored than I thought.
Things are going well and while hitting that 7w 5d mark is less than half way to the point where we need to go (I still have hopefully a minimum of 10 weeks 3 days left in this pregnancy) the fact that I survived that 1st big step is enough to give me the confidence and hope that we can survive the next 7weeks 5 days and more.
There are still a number of unknowns still looming over us that we need to overcome. One being the placental previa (so minor but potentially so major) and hopefully that issue corrects itself. If I haven't previously described placental previa, its when the placenta covers the cervix (the exit strategy of the baby) thus any dialation of the cervix could result in uncontrolled bleeding - bleeding that may not stop, especially since I'm currently on blood thinners for a genetic clotting mutation. If that happens and the bleeding doesn't stop, an unscheduled c-section would be necessary though not ideal in a pregnancy where getting as close to full term is best for the health of a soon-to-be sick little baby.
In a normal pregnancy, some women can go weeks/months with a dialated cervix, thus, we're keeping our fingers crossed that we're one of those situations where the growth of the uterus is such that the cervix pulls away from the placenta and dialation or not, we can coast along to as full term as possible.
Another hurdle of course will be moving into Vancouver. Currently scheduled for mid July (the 9th to be exact - but hopefully I can push it back to the 16th) I can't say I'm looking forward to it much, but its a stark reality that its only 8.5 weeks before I get everything done that needs to be done around the house.
Alas, as the weather warms up, my to-do-list grows and I just hope that the achievement of my 1st major hurdle is a good indication that the next ?? many hurdles are just as successful.
Its not a medical or technical milestone - rather a personal one.
It has officially been 7 weeks and 5 days since we learned about Payton's diaphragm defect. That's the same amount of time I was on bed rest with the boys prior to labour setting in. Its big for me to know that we got past that point but also, that I was able to stay sane once again for that long while faced with a high risk pregnancy.
Apparently my sanity is more anchored than I thought.
Things are going well and while hitting that 7w 5d mark is less than half way to the point where we need to go (I still have hopefully a minimum of 10 weeks 3 days left in this pregnancy) the fact that I survived that 1st big step is enough to give me the confidence and hope that we can survive the next 7weeks 5 days and more.
There are still a number of unknowns still looming over us that we need to overcome. One being the placental previa (so minor but potentially so major) and hopefully that issue corrects itself. If I haven't previously described placental previa, its when the placenta covers the cervix (the exit strategy of the baby) thus any dialation of the cervix could result in uncontrolled bleeding - bleeding that may not stop, especially since I'm currently on blood thinners for a genetic clotting mutation. If that happens and the bleeding doesn't stop, an unscheduled c-section would be necessary though not ideal in a pregnancy where getting as close to full term is best for the health of a soon-to-be sick little baby.
In a normal pregnancy, some women can go weeks/months with a dialated cervix, thus, we're keeping our fingers crossed that we're one of those situations where the growth of the uterus is such that the cervix pulls away from the placenta and dialation or not, we can coast along to as full term as possible.
Another hurdle of course will be moving into Vancouver. Currently scheduled for mid July (the 9th to be exact - but hopefully I can push it back to the 16th) I can't say I'm looking forward to it much, but its a stark reality that its only 8.5 weeks before I get everything done that needs to be done around the house.
Alas, as the weather warms up, my to-do-list grows and I just hope that the achievement of my 1st major hurdle is a good indication that the next ?? many hurdles are just as successful.
Friday, May 13, 2011
Our Little Contador
We have promised Grandma Helen to get some of the videos of Livy up on the blog so she can watch the little bug grow. He's one of her riding her bike (bought when she was 3 weeks old) which she is finally getting some use out of.
Wednesday, May 4, 2011
Smile
One of the cutest things Livy is doing right now is smiling - so we got her on video both laughing and her soon to be infamous smile.
Sunday, May 1, 2011
Some Photos of The Bug
As promised here's a photo of Olivia one night where she fell asleep on my belly button (or "Button" as she calls it). Her days are numbered though since her head now slides off the protruding belly.
"Gottcha" - Growing up is hard and when you start to outgrow your diapers (so that the tabs are rubbing on your hips) you have to take matters into your own hands. Here Livy has done just that and thus we have found a fix.
Dora pullups are the fix (no tabs on the hips) but unfortunately, not even pants are allowed to cover Dora (though Livy thinks they are her swimmer diapers so actually in her mind pants aren't allowed to cover the swimmers (though she has managed to utilize many pairs of her leggings).
A photo of Livy in her NEW Easter dress from Grandma Val. This picture was the second time wearing it (only 2 days into recieving it) and we put it on just to get use out of it. Still, we learned quickly (via the gaping buttons) that it needed to be retired sooner than later. Thus, our "Little" Bug has even outgrown size 3 toddler sizes (sigh).
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