My husband has had a hernia repaired. I have a 'bellybutton' hernia. And my baby HAD a diaphragmatic hernia at birth. Now? It's a Paraesophageal hernia (hernia #2 for little Hailey). From what they can see (and it isn't all that much), it seems as though the exit of the stomach (the first part of the intestines), instead of heading downward, has snaked its way up, pushed through a little hole beside where the esophagus comes down through the diaphragm and some of it is trapped up there, causing occasional backup, and likely explaining ongoing 'noise' we hear insider her chest after feeding. The section of the intestine is hidden, apparently, behind the liver, and tissue has likely attached the two together, making for delicate work to extracate it and bring the bowel down without damaging the bowel or the liver.
Sigh.
So, what this means is that the FIRST thing they want to do is microscopic camerawork to determine what is going on and how severe it is, and if it is what they think it is. At that same time, once they determine the nature of the condition, they will do whatever it is they have to do to fix it. This could be quick and not too difficult, or it could, because of the fact that it is hidden behind the liver, require a nice, big incision up the middle of her chest. Time will tell.
So now I sit here waiting for CHEO to call back and let me know when we can get her in for the surgery. In a sense, it is 'elective', meaning that unless or until Hailey has more episodes, we don't NEED to have the surgery, but the condition, pending another episode, can get more severe and cause complications if not dealt with. So here we go again.
She's strong and we're strong, but this still really bites the big one.
My poor little fighter...
More to come later.
Showing posts with label diaphragmatic hernia. Show all posts
Showing posts with label diaphragmatic hernia. Show all posts
Friday, August 26, 2011
Monday, March 28, 2011
Picky picky picky
It's the CDH. It has to be. My little one, Hailey, is the most frustrating little eater. Just....arghhh! A little bit here, another 1/2 bottle there. Wasted breast milk all the time, since eventually you have to throw it out. I know I should be patient. She's doing okay, she's gaining weight, but MAN, it is so frustrating! And really, IS she doing okay? Do other parents of CDH babies have so many issues with feedings? I suspect they do...
Another trend that seems to be forming from this is fewer poops. Yes, poops. Doncha know that Moms do nothing but talk about poop? Hailey has recently gone more than two days without a poop (twice now) and it just seems she's getting bunged up more often. I'm not a worry wart, but you do wonder if it's a sign that things aren't functioning as they should in her - majorly reorganized - abdomen.
Sigh.
But in the meantime, let me put down the laptop and pick up the rest of the bottle to see if she'll now take it. It's what a Mom's gotta do. That, and remain patient.
Another trend that seems to be forming from this is fewer poops. Yes, poops. Doncha know that Moms do nothing but talk about poop? Hailey has recently gone more than two days without a poop (twice now) and it just seems she's getting bunged up more often. I'm not a worry wart, but you do wonder if it's a sign that things aren't functioning as they should in her - majorly reorganized - abdomen.
Sigh.
But in the meantime, let me put down the laptop and pick up the rest of the bottle to see if she'll now take it. It's what a Mom's gotta do. That, and remain patient.
Thursday, November 18, 2010
My daughter: My hero
This post was supposed to go up yesterday, the one week anniversary of baby Hailey’s surgery. As per the norm these days, I couldn’t get to it, and likely won’t finish writing this in the time I have allowed for it today either, as I have to run shortly to take baby Alexandra to her 2 week doctor’s appointment.
As I sit here in the ‘pod’ at CHEO, I can hear the not-so-coarse anymore cries of my little Hailey, who as of this morning is off oxygen and breathing room air for the first time since her birth. She is still being fed by a tube, but Mother’s milk at a higher and higher dosage every day. I found out today that it will be another 5 days or so of increasing this continuous feeding method before they will be looking at starting regular feedings (i.e. larger amounts all at once).
Alexandra is here in her bassinette stroller, sleeping, but increasingly restless – it will be again time for more boobage shortly, and so maybe this blog won’t be as detailed as I would like, and frankly, I want to hold my little girl one more time before I have to skip out.
So as this title says, my daughter is my hero. There is no other way to describe the fight she has in her, and her tolerance of all she has been through. The photos will show it all. What started as an initial cry and big deep breath at birth (great for Mom and Dad to hear, but VERY bad for Hailey and the nurses who then had to decompress the lungs and remove the air from her stomach and bowels) has progressed past a number of days of stabilization, surgery five days after birth on Monday, November 8, an initial feeding trial only two days after surgery (which was regurgitated several hours later), then continuous small feedings that Friday which have progressed from 1ml/hr at that point to now 5ml/hr with another 1ml/hr added every 12 hour period. Her ventilation tube was removed on Saturday, her medications were completely weaned down on Sunday, and all signs are very, very good.
Here are some shots before her surgery. The first was shot by Art in the OR right after she was intubated.
This shot is the first time Mommy got to see or touch her little hero. She was only there for what seemed like a moment, then carted off to CHEO. Daddy went with her. It was excruciating, but necessary.
Then came the first 72 hours after Mom's surgery. Trying to nurse. Trying to recover. Trying to make my way over somehow to CHEO without being allowed to bring big sister Alex. And the little I did get there, this is what I saw...a damn cute little helpless, but tough baby girl, with tubes coming out of what seemed like every area on her tiny body. Hard to look at, and yet we knew this was what was necessary to save her. To stabilize her for just long enough to get ready for a crazy 'work over' to come. We didn't know how long she would need to be in this state, drugged and intubated, and waiting, but in the end it was only 5 days. A small amount of time, a lifetime...
Then, surgery day. What can I say about surgery day, November 8? Hell on earth? We won't get into the emotional roller coaster, but here, in a nutshell, is the overview of what 'technically' happened.
The Surgery
The surgery was scheduled for 11 am on November 8, just 5 days (albeit long days) after Hailey’s birth. She had been stable almost continuously and so everything was looking great in terms of her readiness for what was to be a major reworking of her organs. We hadn’t met until then with the surgeon, and so it was literally right before her surgery that we met with our exceptional surgeon. We were shocked to see that he was younger than we were. Very soft-spoken, and when we asked for him to draw out a diagram of what the situation was and what he was going to be doing, he obliged. One day I will scan that image and put up a post about it, but in the meantime, we have something even more incredible…an x-ray of the before and after.
In the before shot (above) you will see that essentially all the bowels, stomach, intestines, and even the spleen and part of her liver are all stuffed up in her left lung cavity (the black masses). The left lung, inside the cavity, is collapsed in behind all the other organs, and her heart, which is supposed to be kinda in the middle of her chest cavity, has been squished over to the right, displaced.
And here is the after shot. All her organs have been moved down and into place, and if you see the left lung cavity, you can see the faint outline of her left lung, partially expanded. Eventually her lung will fill this cavity as it grows and gets stronger, and the heart has already started to migrate over to its proper position.
One of the biggest concerns of the surgery was the discovery of how large the hernia/hole actually was, and whether or not there would be enough surrounding muscle tissue to close up the hole without introducing artificial prostheses. If they were able to patch the hole without the artificial patch, her likelihood of re-herniation and complications would be greatly limited. Turns out, although the hole was considered quite large, there was enough tissue there to patch it together, and so the prognosis was excellent. From there, the next question was going to be “Are all the organs fully developed and functioning as they should be?” Time would tell on that front.
Oh, and I should mention that while meeting with the surgeon, I did ask him directly if he had had a good sleep and confirmed that he had not gone out for drinks with his buds the night before. Although asked in a joking manner, I was dead serious. We all have bad days at work, right? The nurse afterward was flabbergasted that I actually came out and asked that question.
So here we are, 10 days after her surgery, and she is up to 9 ml/hr of Mommy’s breast milk. She is also being held by Mom, Dad and even Grandma and Grandpa these days, and as of this morning, I have been told I am allowed to put her to my breast to help her learn to breastfeed. I can’t say what this means to me, as I was so nervous that she would learn to feed through a bottle first and not know how to latch. I can’t wait.
So I guess that means I want to wrap this up. I have some feeding to do – both of Alex and of Hailey. Will try get another blog post done shortly, but given this took 4 days to finish (and I still have to format and upload pix), we’ll see.
Here are some more shots of Hailey at various stages after the surgery.
And then the ventilation tube came out, and stuff slowly got removed from her body. Starting with the ventilation tube!
As I sit here in the ‘pod’ at CHEO, I can hear the not-so-coarse anymore cries of my little Hailey, who as of this morning is off oxygen and breathing room air for the first time since her birth. She is still being fed by a tube, but Mother’s milk at a higher and higher dosage every day. I found out today that it will be another 5 days or so of increasing this continuous feeding method before they will be looking at starting regular feedings (i.e. larger amounts all at once).
Alexandra is here in her bassinette stroller, sleeping, but increasingly restless – it will be again time for more boobage shortly, and so maybe this blog won’t be as detailed as I would like, and frankly, I want to hold my little girl one more time before I have to skip out.
So as this title says, my daughter is my hero. There is no other way to describe the fight she has in her, and her tolerance of all she has been through. The photos will show it all. What started as an initial cry and big deep breath at birth (great for Mom and Dad to hear, but VERY bad for Hailey and the nurses who then had to decompress the lungs and remove the air from her stomach and bowels) has progressed past a number of days of stabilization, surgery five days after birth on Monday, November 8, an initial feeding trial only two days after surgery (which was regurgitated several hours later), then continuous small feedings that Friday which have progressed from 1ml/hr at that point to now 5ml/hr with another 1ml/hr added every 12 hour period. Her ventilation tube was removed on Saturday, her medications were completely weaned down on Sunday, and all signs are very, very good.
Here are some shots before her surgery. The first was shot by Art in the OR right after she was intubated.
This shot is the first time Mommy got to see or touch her little hero. She was only there for what seemed like a moment, then carted off to CHEO. Daddy went with her. It was excruciating, but necessary.
Then came the first 72 hours after Mom's surgery. Trying to nurse. Trying to recover. Trying to make my way over somehow to CHEO without being allowed to bring big sister Alex. And the little I did get there, this is what I saw...a damn cute little helpless, but tough baby girl, with tubes coming out of what seemed like every area on her tiny body. Hard to look at, and yet we knew this was what was necessary to save her. To stabilize her for just long enough to get ready for a crazy 'work over' to come. We didn't know how long she would need to be in this state, drugged and intubated, and waiting, but in the end it was only 5 days. A small amount of time, a lifetime...
Then, surgery day. What can I say about surgery day, November 8? Hell on earth? We won't get into the emotional roller coaster, but here, in a nutshell, is the overview of what 'technically' happened.
The Surgery
The surgery was scheduled for 11 am on November 8, just 5 days (albeit long days) after Hailey’s birth. She had been stable almost continuously and so everything was looking great in terms of her readiness for what was to be a major reworking of her organs. We hadn’t met until then with the surgeon, and so it was literally right before her surgery that we met with our exceptional surgeon. We were shocked to see that he was younger than we were. Very soft-spoken, and when we asked for him to draw out a diagram of what the situation was and what he was going to be doing, he obliged. One day I will scan that image and put up a post about it, but in the meantime, we have something even more incredible…an x-ray of the before and after.
In the before shot (above) you will see that essentially all the bowels, stomach, intestines, and even the spleen and part of her liver are all stuffed up in her left lung cavity (the black masses). The left lung, inside the cavity, is collapsed in behind all the other organs, and her heart, which is supposed to be kinda in the middle of her chest cavity, has been squished over to the right, displaced.
And here is the after shot. All her organs have been moved down and into place, and if you see the left lung cavity, you can see the faint outline of her left lung, partially expanded. Eventually her lung will fill this cavity as it grows and gets stronger, and the heart has already started to migrate over to its proper position.
One of the biggest concerns of the surgery was the discovery of how large the hernia/hole actually was, and whether or not there would be enough surrounding muscle tissue to close up the hole without introducing artificial prostheses. If they were able to patch the hole without the artificial patch, her likelihood of re-herniation and complications would be greatly limited. Turns out, although the hole was considered quite large, there was enough tissue there to patch it together, and so the prognosis was excellent. From there, the next question was going to be “Are all the organs fully developed and functioning as they should be?” Time would tell on that front.
Oh, and I should mention that while meeting with the surgeon, I did ask him directly if he had had a good sleep and confirmed that he had not gone out for drinks with his buds the night before. Although asked in a joking manner, I was dead serious. We all have bad days at work, right? The nurse afterward was flabbergasted that I actually came out and asked that question.
So here we are, 10 days after her surgery, and she is up to 9 ml/hr of Mommy’s breast milk. She is also being held by Mom, Dad and even Grandma and Grandpa these days, and as of this morning, I have been told I am allowed to put her to my breast to help her learn to breastfeed. I can’t say what this means to me, as I was so nervous that she would learn to feed through a bottle first and not know how to latch. I can’t wait.
So I guess that means I want to wrap this up. I have some feeding to do – both of Alex and of Hailey. Will try get another blog post done shortly, but given this took 4 days to finish (and I still have to format and upload pix), we’ll see.
Here are some more shots of Hailey at various stages after the surgery.
And then the ventilation tube came out, and stuff slowly got removed from her body. Starting with the ventilation tube!
What a fighter. What a survivor.
My daughter: my hero.
Wednesday, October 20, 2010
Here we grow again - tomorrow could be a big or even bigger day
Yup - tomorrow marks yet another ultrasound and doctor's appointment to check on the status of our little baby girls, but it's an important ultrasound because it is the first one we've had in two weeks (there have been two others since) that will take measurements and estimate the growth of the twins, and each of their weights.
Two weeks ago, the alarm bells were raised because although Baby A was underweight for her gestational age (under 5 lbs), Baby B was not only a lot smaller (3lbs 9 oz), but hadn't grown since the ultrasound two weeks prior. If tomorrow reveals she has again not gained much weight, it won't matter that all else looks good; I would expect that ultrasound result would lead to a speedy delivery.
So yeah...it will either be a big day showing some good growth and babies that are hanging out, playful and growing stonger by the day (and they have been incredibly active, I have to say), or it will be a bigger day. Like, the biggest of my life, without question.
Well, actually, a lot of massive life questions will be answered, now that you mention it.
Exciting.
Terrifying.
Two weeks ago, the alarm bells were raised because although Baby A was underweight for her gestational age (under 5 lbs), Baby B was not only a lot smaller (3lbs 9 oz), but hadn't grown since the ultrasound two weeks prior. If tomorrow reveals she has again not gained much weight, it won't matter that all else looks good; I would expect that ultrasound result would lead to a speedy delivery.
So yeah...it will either be a big day showing some good growth and babies that are hanging out, playful and growing stonger by the day (and they have been incredibly active, I have to say), or it will be a bigger day. Like, the biggest of my life, without question.
Well, actually, a lot of massive life questions will be answered, now that you mention it.
Exciting.
Terrifying.
Sunday, October 10, 2010
Terrified - it's not Halloween yet, though, so what's up?
So...it has taken a couple of days for me to calm down a bit in order to get this blog post out.
On Thursday we went for our last of the bi-weekly ultrasound and clinic appointments (here on out the plan was to move to weekly appointments until the twins arrive). The ultrasound was booked for 1pm and we finally left the hospital at about 6:40pm. Yeah...if you are thinking that doesn't sound good, you'd be right, but it might not be as bad as you THINK it is, but this particular Mommy to be is admittedly scared out of her wits right now.
So what happened? Well, the ultrasound measurements revealed that our little Baby B, who is undersized to begin with, has not grown in the two weeks since her last ultrasound. Baby A is still under 5 lbs too, which is pretty low, but it's really scary that Baby B, even when you toss aside her abdomen measurements (which are generally not a good indication of her size), only gained 1 oz and is still under 4 lbs in their estimation.
What did that mean? Well, it meant that we waited well over 1/2 an hour for the doctors to study the ultrasound results and it meant that when we did speak to the doctors, the weekly visits changed immediately to an order for two ultrasounds next week - the first asap on Tuesday and another on Friday, as well as a clinic appointment on Thursday. It also meant a trip down the hall to triage before we left for a NST - or non-stress test - to monitor the babies' hearts and particularly movements. The nurses were happy with the results and the babies were moving really well, but it was scary and took another hour, then another 1/2 hour to wait for the doctor to officially release us to go home.
We were ordered to:
a) pack our bags and bring what we need to be admitted to all future appointments just in case they have to deliver the babies
b) take it easy, as Baby A is still solidly breech, but worse, the umbilical chord is presenting, so they want us in the hospital IMMEDIATELY upon any sign of labour, as apparently the membrane can rupture and the chord can come out, which is not good - Momma has to take it a lot more easy than she has been...
c) monitor the babies' movements, especially Baby B's to ensure all is well (had a real scare yesterday as I didn't clearly distinguish her movements for a number of hours) - but I find this really hard, since there are two there, and Baby B's feet are often in the same area as Baby A's much stronger fists/arms. Eventually, after I had a nap, she started moving around again, but I'm still totally stressed
and finally d) (this was not the doctor's orders at all, but our own priority) - we have to get the bloody house in order even more urgently now. Ideally, we have at least another full week of work ahead to be totally prepared, but at the very least we have a few must do's!
So yes...this weekend we have been putting together the stroller, putting in car seat #1 for Baby A, getting the playard set up on the main floor, and packing our bags etc. as well as trying to do the cleaning, organizing and purging we need to get done. Meanwhile...we're terrified about having to deliver these babies so soon. Under normal circumstances both babies would be far enough along to do well and come home in a reasonable time, but with the hernia issue in Baby B...it's so important to take her as far as possible.
I'm terrified by her latest status, her current size (under 4lbs is too small - but I don't know that clinically it is - the doctors haven't said to me that it is, nor would they probably predict this), and what might happen this week. I'm ready to meet my babies, but the positivity and confidence I had in Baby B's outcome was based on taking the two of them a lot further into their gestation.
Emotionally, I'm just okay. I was doing so well, but now? Beyond the fear of what might happen, I can honestly say that I'm starting to be resentful. I'm just so tired of how bumpy this ride has been, ya know? I'm annoyed that underlining all of our preparations, there is fear of loss. I'm angry that we are rushing through the last-minute preparation and not truly enjoying the process. It's just once again more 'excitement tempered by a dose of caution and reality'.
Why can't we just be allowed to enjoy? It's angering. And...I'm starting to accept that I also won't be able to deliver these babies, but instead they will be yanked from me via C-section. Okay for some, but certainly not what I was looking forward to. But then...what part of this pregnancy has turned out to be what I hoped it would be?
Sorry to be so negative. I'm not a negative person, in general. But. It's an honest account of what my head space is like sometimes.
Other times? I'm so happy to have at least gotten to this point. I'm enjoying seeing the stroller ready to go, and the little outfit picked out for when Baby A comes home. I still am totally thankful for all that we DO have and all that we have accomplished. We are truly blessed.
And so...yes, it's Thanksgiving and not Halloween. I'm taking it easy and hoping for the best. And I will try to reserve 'fright night' for another week...
On Thursday we went for our last of the bi-weekly ultrasound and clinic appointments (here on out the plan was to move to weekly appointments until the twins arrive). The ultrasound was booked for 1pm and we finally left the hospital at about 6:40pm. Yeah...if you are thinking that doesn't sound good, you'd be right, but it might not be as bad as you THINK it is, but this particular Mommy to be is admittedly scared out of her wits right now.
So what happened? Well, the ultrasound measurements revealed that our little Baby B, who is undersized to begin with, has not grown in the two weeks since her last ultrasound. Baby A is still under 5 lbs too, which is pretty low, but it's really scary that Baby B, even when you toss aside her abdomen measurements (which are generally not a good indication of her size), only gained 1 oz and is still under 4 lbs in their estimation.
What did that mean? Well, it meant that we waited well over 1/2 an hour for the doctors to study the ultrasound results and it meant that when we did speak to the doctors, the weekly visits changed immediately to an order for two ultrasounds next week - the first asap on Tuesday and another on Friday, as well as a clinic appointment on Thursday. It also meant a trip down the hall to triage before we left for a NST - or non-stress test - to monitor the babies' hearts and particularly movements. The nurses were happy with the results and the babies were moving really well, but it was scary and took another hour, then another 1/2 hour to wait for the doctor to officially release us to go home.
We were ordered to:
a) pack our bags and bring what we need to be admitted to all future appointments just in case they have to deliver the babies
b) take it easy, as Baby A is still solidly breech, but worse, the umbilical chord is presenting, so they want us in the hospital IMMEDIATELY upon any sign of labour, as apparently the membrane can rupture and the chord can come out, which is not good - Momma has to take it a lot more easy than she has been...
c) monitor the babies' movements, especially Baby B's to ensure all is well (had a real scare yesterday as I didn't clearly distinguish her movements for a number of hours) - but I find this really hard, since there are two there, and Baby B's feet are often in the same area as Baby A's much stronger fists/arms. Eventually, after I had a nap, she started moving around again, but I'm still totally stressed
and finally d) (this was not the doctor's orders at all, but our own priority) - we have to get the bloody house in order even more urgently now. Ideally, we have at least another full week of work ahead to be totally prepared, but at the very least we have a few must do's!
So yes...this weekend we have been putting together the stroller, putting in car seat #1 for Baby A, getting the playard set up on the main floor, and packing our bags etc. as well as trying to do the cleaning, organizing and purging we need to get done. Meanwhile...we're terrified about having to deliver these babies so soon. Under normal circumstances both babies would be far enough along to do well and come home in a reasonable time, but with the hernia issue in Baby B...it's so important to take her as far as possible.
I'm terrified by her latest status, her current size (under 4lbs is too small - but I don't know that clinically it is - the doctors haven't said to me that it is, nor would they probably predict this), and what might happen this week. I'm ready to meet my babies, but the positivity and confidence I had in Baby B's outcome was based on taking the two of them a lot further into their gestation.
Emotionally, I'm just okay. I was doing so well, but now? Beyond the fear of what might happen, I can honestly say that I'm starting to be resentful. I'm just so tired of how bumpy this ride has been, ya know? I'm annoyed that underlining all of our preparations, there is fear of loss. I'm angry that we are rushing through the last-minute preparation and not truly enjoying the process. It's just once again more 'excitement tempered by a dose of caution and reality'.
Why can't we just be allowed to enjoy? It's angering. And...I'm starting to accept that I also won't be able to deliver these babies, but instead they will be yanked from me via C-section. Okay for some, but certainly not what I was looking forward to. But then...what part of this pregnancy has turned out to be what I hoped it would be?
Sorry to be so negative. I'm not a negative person, in general. But. It's an honest account of what my head space is like sometimes.
Other times? I'm so happy to have at least gotten to this point. I'm enjoying seeing the stroller ready to go, and the little outfit picked out for when Baby A comes home. I still am totally thankful for all that we DO have and all that we have accomplished. We are truly blessed.
And so...yes, it's Thanksgiving and not Halloween. I'm taking it easy and hoping for the best. And I will try to reserve 'fright night' for another week...
Monday, September 13, 2010
I passed a test!
Of course, I failed the glucose test and now have 'class' every Wednesday afternoon all afternoon at the hospital re: controlling my gestational diabetes. And yes, that comes with a home testing kit for daily pricking (oh joy).
But the test I most wanted to pass was the echocardiogram on the girls. And we did. Finally, an appointment that didn't inspire a whole new set of appointments. Hearing the words, "We likely don't need to see you again." was sweet nectar to this tired mommy-to-be. Both hearts look fine and the blood flow is excellent, and although Baby B's heart is squished and slightly displaced, it is doing a good job pumping life blood through her. I just still have a very good feeling about all this. I believe strongly that after all the tough times, the end result will be good for her. But then again, I have to believe that for my sanity, don't I?
But yes. I think I've said before that I have never failed as many tests as I have during this pregnancy. So nice to get a passing grade for a change!
But the test I most wanted to pass was the echocardiogram on the girls. And we did. Finally, an appointment that didn't inspire a whole new set of appointments. Hearing the words, "We likely don't need to see you again." was sweet nectar to this tired mommy-to-be. Both hearts look fine and the blood flow is excellent, and although Baby B's heart is squished and slightly displaced, it is doing a good job pumping life blood through her. I just still have a very good feeling about all this. I believe strongly that after all the tough times, the end result will be good for her. But then again, I have to believe that for my sanity, don't I?
But yes. I think I've said before that I have never failed as many tests as I have during this pregnancy. So nice to get a passing grade for a change!
Tuesday, September 7, 2010
Fantasy and reality - the week ahead
Just back from a late-nite jaunt to IKEA. Hmmm...the evening of the first day school, university and other educational institutions = not the best night to go! But that's okay, 'cause this Mommy to be has been scoping out her purchases for a while now. Where did I get the energy? From my afternoon NAP. That's Z-Z-Z-Z folks, and it felt great.
Being off work is an odd feeling, but there is so much to do that I have a lot of distractions. It was funny though that my first fully-formed thought this morning was of work and something I forgot to mention before I left! I successfully avoided emailing and diving back in, though. They will figure it out, right?
So this week. I am thinking of it as a mix of fantasy and reality. Part of my week (see IKEA note above) will be spent in the dreamy, fun, highly expectant planning of the twins' arrival. As I decorate the nursery and buy little odds and ends to finish things off, I will be imagining what it will be like to have them here, home, cuddling against me, blinking and waving their little fists...you know...the best of the best of times.
I will also be immersed in no less than three trips to the hospital for a barrage of tests and appointments. This, of course, the reality.
This morning was super fun....the dreaded glucose test. And not the first one, nooooooo.....I FAILED that one, necessitating a second, more in depth and uncomfortable test (can I just say that throughout this pregnancy, I have failed more tests than in the rest of my life combined?) that requires 12 hours of fasting, then drinking a sickeningly sweet 75g of glucose orange syrup, then sitting for an hour, nauseous with the sugar, followed by a blood test, followed by another one hour wait and another blood test. And no, you are not allowed to drink water, walk around or otherwise do anything other than sit. I finally got to eat at about 12:45pm today.
The other appointments? Our regular 2-week ultrasound and doctor appointment on Thursday, and then an in-depth fetal echocardiogram ultrasound at CHEO Friday to look for any issues with either of the twins' hearts.
On the menu for Thursday is a discussion about induction, scheduled c-sections and all the planning to come. After our meeting with the neonatologist last week, we discovered that it MIGHT be adviseable (contrary to the word that we had gotten from the doctors up to now) to schedule an induction. This would guarantee all hands on deck at the precise moment we need them for Baby B's care. While the 'on call' system is apparently excellent, it would be best not to take chances. BUT the dilemma for me is that I want to take both babies as far as possible in gestation, so...when to schedule this? Toss in the fact that these two little goobers have been breech for most of the last three months, and the focus on inducing labour might be a moot discussion, and a scheduled C necessary. I'm resigned to this possibility (while still hopeful that vaginal delivery could still happen) and see the potential pluses to this, not the least of which being the fact that a scheduled C would be the least tiring of the options, allowing Mom and Dad to cope a bit better with the stress of what is to come after the babies arrive. So...yeah...I want to have a good discussion about what we might wish to do moving forward.
The echocardiogram is being conducted both as preventative but also because babies with CDH can often have issues with their heart, due to displacement and pressure. From what I understand, having all those organs squished up there in that small space means the heart is pushed to the side to make room, and it can affect the blood pressure/flow and also the development of the heart. We are hopeful that nothing is amiss...
Aaaaand....basement renos continue. On the menu tomorrow/Thursday is framing to prepare for the electrician. Looking forward to having this come together also. Kinda tired of living in chaos in various parts of the house. Will be nice to have double the living space soon...when this is done, I can have some fun decorating and designing the playroom space down there. More fantasy and imagining...
And meanwhile? The babies continue to play trampoline with my bladder and paddy-cakes through the belly with Mommy.
Love.
Being off work is an odd feeling, but there is so much to do that I have a lot of distractions. It was funny though that my first fully-formed thought this morning was of work and something I forgot to mention before I left! I successfully avoided emailing and diving back in, though. They will figure it out, right?
So this week. I am thinking of it as a mix of fantasy and reality. Part of my week (see IKEA note above) will be spent in the dreamy, fun, highly expectant planning of the twins' arrival. As I decorate the nursery and buy little odds and ends to finish things off, I will be imagining what it will be like to have them here, home, cuddling against me, blinking and waving their little fists...you know...the best of the best of times.
I will also be immersed in no less than three trips to the hospital for a barrage of tests and appointments. This, of course, the reality.
This morning was super fun....the dreaded glucose test. And not the first one, nooooooo.....I FAILED that one, necessitating a second, more in depth and uncomfortable test (can I just say that throughout this pregnancy, I have failed more tests than in the rest of my life combined?) that requires 12 hours of fasting, then drinking a sickeningly sweet 75g of glucose orange syrup, then sitting for an hour, nauseous with the sugar, followed by a blood test, followed by another one hour wait and another blood test. And no, you are not allowed to drink water, walk around or otherwise do anything other than sit. I finally got to eat at about 12:45pm today.
The other appointments? Our regular 2-week ultrasound and doctor appointment on Thursday, and then an in-depth fetal echocardiogram ultrasound at CHEO Friday to look for any issues with either of the twins' hearts.
On the menu for Thursday is a discussion about induction, scheduled c-sections and all the planning to come. After our meeting with the neonatologist last week, we discovered that it MIGHT be adviseable (contrary to the word that we had gotten from the doctors up to now) to schedule an induction. This would guarantee all hands on deck at the precise moment we need them for Baby B's care. While the 'on call' system is apparently excellent, it would be best not to take chances. BUT the dilemma for me is that I want to take both babies as far as possible in gestation, so...when to schedule this? Toss in the fact that these two little goobers have been breech for most of the last three months, and the focus on inducing labour might be a moot discussion, and a scheduled C necessary. I'm resigned to this possibility (while still hopeful that vaginal delivery could still happen) and see the potential pluses to this, not the least of which being the fact that a scheduled C would be the least tiring of the options, allowing Mom and Dad to cope a bit better with the stress of what is to come after the babies arrive. So...yeah...I want to have a good discussion about what we might wish to do moving forward.
The echocardiogram is being conducted both as preventative but also because babies with CDH can often have issues with their heart, due to displacement and pressure. From what I understand, having all those organs squished up there in that small space means the heart is pushed to the side to make room, and it can affect the blood pressure/flow and also the development of the heart. We are hopeful that nothing is amiss...
Aaaaand....basement renos continue. On the menu tomorrow/Thursday is framing to prepare for the electrician. Looking forward to having this come together also. Kinda tired of living in chaos in various parts of the house. Will be nice to have double the living space soon...when this is done, I can have some fun decorating and designing the playroom space down there. More fantasy and imagining...
And meanwhile? The babies continue to play trampoline with my bladder and paddy-cakes through the belly with Mommy.
Love.
Tuesday, August 24, 2010
CDH - Congenital Diaphragmatic Hernia
Okay, so I'm now up on the lingo around this issue! Henseforth, I will probably refer to my little goober's issue as CDH. We have another ultrasound and Dr.s appointment on Thursday. I'm hoping I get a different doctor this time: two weeks ago, I had one of those doctors who couldn't seem to answer my questions with a concise answer, choosing instead to go completely off-topic on diatribes of random information, wasting both his and my time.
Oh yes, and he also implied that whether my birth plan was to go without epidural or not, I would want one. Believe me, I mean this when I say I am going to do whatever I can to go the natural route (barring a lack of choice, of course). I have lots of support - my Mom, hubby and two doulas - and we shall see, but I really don't appreciate men who scoff at the idea that I can deliver without meds! Yes, it's still entirely possible that I will beg for it, but my PLAN is to try go without. Why is that something to laugh at?
So back to the CDH. I met an amazing little 16 mo. old girl last night. Her name is Georgia, and she survived CDH surgery shortly after birth. Her parents are wonderful, and her Mom, a blogger as well. Prior to heading over for the meeting, I had a look way back to the beginning of her tale to read up on what she experienced. Georgia's story is the very best case scenario, but nevertheless, it was still so very hard to read about in parts. It all became very real what we are going to experience in less than three months.
While speaking to Georgia's Mom, we discovered that she had met other parents in Ottawa dealing with the issue, but not in any organized way (in fact, she, like me, was just lucky to know people who knew people etc.), which got me thinking. The information you find online about this condition is either very clinical, or reflective of more international, or US-based information and statistics - but what of the experiences of the parents and babies locally? What about putting together a website and forum, and lining up experienced parents who have made it through to help other parents facing this crazy situation? Something I might consider...however I wish I had better html training to do it properly...any resources, ideas or volunteers?
So, have I mentioned before now how lucky we are to be here in Ottawa facing a baby with CDH? We are. After talking to both the CHEO surgeon, and comparing that to the information I got from Georgia's parents, we feel a lot more positive about the eventual outcome of this ordeal. Unlike other areas of the world, it seems the track record for Ottawa's survival rate is far better than the 50% worldwide rate. No, we don't really know the percentage, but last year we think there were at least 4 cases, and all survived. No, we also don't know to what extent the recovery was a complete one without residual medical conditions (which is entirely possible). We also don't know what the average recovery time was, which, according to the CHEO surgeon can be months - much longer than the one month Georgia spent in the hospital.
We are hoping we can get some anecdotal information from the neonatologist we are meeting next week. They are the primary and key players in this whole thing, as they are the ones who help to stabilize the baby upon birth and help her breathe, and they are also the ones who carefully tend to the poor little ones after their surgery. They know a lot about the care of these little ones, as well as the ins and outs of the experience for the parents. Not sure just how many combo twins/CDH cases they have, but they can probably answer some of our questions about how to be at the hospital and also have a baby to tend to NOT in the hospital. Can she come in to be with her sister, or will she have to be separated for the long haul? Where can one of us go with one baby while the other parent visits the hospitalized baby? What are our options for staying there/sleeping etc.? Lots of questions, you know? It's gonna be quite a challenge.
But we really do feel positive about her chances. We think it will all work out in the end. And we feel very, very supported by friends, family, the team of specialists who will help us all along, and now, the generous family that has been through this situation, and who selflessly offered us their time and insights. I will be sure to offer the same to any other parents-to-be facing a baby with CDH...
Oh yes, and he also implied that whether my birth plan was to go without epidural or not, I would want one. Believe me, I mean this when I say I am going to do whatever I can to go the natural route (barring a lack of choice, of course). I have lots of support - my Mom, hubby and two doulas - and we shall see, but I really don't appreciate men who scoff at the idea that I can deliver without meds! Yes, it's still entirely possible that I will beg for it, but my PLAN is to try go without. Why is that something to laugh at?
So back to the CDH. I met an amazing little 16 mo. old girl last night. Her name is Georgia, and she survived CDH surgery shortly after birth. Her parents are wonderful, and her Mom, a blogger as well. Prior to heading over for the meeting, I had a look way back to the beginning of her tale to read up on what she experienced. Georgia's story is the very best case scenario, but nevertheless, it was still so very hard to read about in parts. It all became very real what we are going to experience in less than three months.
While speaking to Georgia's Mom, we discovered that she had met other parents in Ottawa dealing with the issue, but not in any organized way (in fact, she, like me, was just lucky to know people who knew people etc.), which got me thinking. The information you find online about this condition is either very clinical, or reflective of more international, or US-based information and statistics - but what of the experiences of the parents and babies locally? What about putting together a website and forum, and lining up experienced parents who have made it through to help other parents facing this crazy situation? Something I might consider...however I wish I had better html training to do it properly...any resources, ideas or volunteers?
So, have I mentioned before now how lucky we are to be here in Ottawa facing a baby with CDH? We are. After talking to both the CHEO surgeon, and comparing that to the information I got from Georgia's parents, we feel a lot more positive about the eventual outcome of this ordeal. Unlike other areas of the world, it seems the track record for Ottawa's survival rate is far better than the 50% worldwide rate. No, we don't really know the percentage, but last year we think there were at least 4 cases, and all survived. No, we also don't know to what extent the recovery was a complete one without residual medical conditions (which is entirely possible). We also don't know what the average recovery time was, which, according to the CHEO surgeon can be months - much longer than the one month Georgia spent in the hospital.
We are hoping we can get some anecdotal information from the neonatologist we are meeting next week. They are the primary and key players in this whole thing, as they are the ones who help to stabilize the baby upon birth and help her breathe, and they are also the ones who carefully tend to the poor little ones after their surgery. They know a lot about the care of these little ones, as well as the ins and outs of the experience for the parents. Not sure just how many combo twins/CDH cases they have, but they can probably answer some of our questions about how to be at the hospital and also have a baby to tend to NOT in the hospital. Can she come in to be with her sister, or will she have to be separated for the long haul? Where can one of us go with one baby while the other parent visits the hospitalized baby? What are our options for staying there/sleeping etc.? Lots of questions, you know? It's gonna be quite a challenge.
But we really do feel positive about her chances. We think it will all work out in the end. And we feel very, very supported by friends, family, the team of specialists who will help us all along, and now, the generous family that has been through this situation, and who selflessly offered us their time and insights. I will be sure to offer the same to any other parents-to-be facing a baby with CDH...
Wednesday, August 18, 2010
Reality sets in
So....we met with the CHEO surgeon yesterday. You know when you KNOW something is going to happen, but you haven't truly accepted the situation? Or maybe, less about acceptance, you just haven't fully conceptualized what that reality is going to look like?
That was me yesterday.
As I was asking the questions, "When will she go into surgery if she is able to breathe?", and "How large will the scar be?", and "How long is her recovery time and how long might she be in the hospital?" and more, one by one my questions were answered and the reality was sinking in.
My baby could die. My little girl might not be able to breathe and be stablized in order to even undergo surgery. She may be able to undergo surgery but take months to recover in the hospital... months when she is not home with her sister, and where Mom and Dad are living between two crazy realities. She may ultimately be alive, but have persistent medical issues as severe as requiring a tracheostomy and breathing apparatus for life. She has a serious condition that will be very tough on both her and Mommy and Daddy. Full stop.
Do I have optimistic faith that she will make it through and be healthy on the other side (still a strong possibility)? Yes. But I have to be ready to face the myriad of other possibilities, don't I?
Easier on a day like today after a good sleep and positive progress happening around me (finally got the carpet reinstalled properly and my 'team' is working on reconfiguring our entire upper floor to create order from chaos and tackle some fun nursery projects), but tough yesterday after a poor night of heartburn induced wakefulness...
While I generally have a positive attitude and am determined to enjoy both this pregnancy and my dreams of a perfect eventual outcome, it's not all roses, and I would be remiss to pretend that it was.
I will say this, though...I wouldn't change a thing, and I will face this head on. We have quite a journey ahead of us.
That was me yesterday.
As I was asking the questions, "When will she go into surgery if she is able to breathe?", and "How large will the scar be?", and "How long is her recovery time and how long might she be in the hospital?" and more, one by one my questions were answered and the reality was sinking in.
My baby could die. My little girl might not be able to breathe and be stablized in order to even undergo surgery. She may be able to undergo surgery but take months to recover in the hospital... months when she is not home with her sister, and where Mom and Dad are living between two crazy realities. She may ultimately be alive, but have persistent medical issues as severe as requiring a tracheostomy and breathing apparatus for life. She has a serious condition that will be very tough on both her and Mommy and Daddy. Full stop.
Do I have optimistic faith that she will make it through and be healthy on the other side (still a strong possibility)? Yes. But I have to be ready to face the myriad of other possibilities, don't I?
Easier on a day like today after a good sleep and positive progress happening around me (finally got the carpet reinstalled properly and my 'team' is working on reconfiguring our entire upper floor to create order from chaos and tackle some fun nursery projects), but tough yesterday after a poor night of heartburn induced wakefulness...
While I generally have a positive attitude and am determined to enjoy both this pregnancy and my dreams of a perfect eventual outcome, it's not all roses, and I would be remiss to pretend that it was.
I will say this, though...I wouldn't change a thing, and I will face this head on. We have quite a journey ahead of us.
Thursday, July 29, 2010
Baby B - An update and a surprise preview
It has been a long day, but all told, not nearly as stressful as it could have been. First, let's get to the fun part. After almost an hour-long diagnostic ultrasound, our technician surprised us by producing a 4D ultrasound wand, and this photo of our beautiful goober, uber-fighter, baby B:
.jpg)
We don't have a shot of Baby A, as she her back was to us, facing my spine.
Cute as hell, right?
And what of her story? We have some more chapters to include, thanks to our long meeting with the doctor today at the General.
Where to start? Well, both babies have had a good growth week, and Baby B especially, so she is now no longer in a low weight concern category, so Mommy is pretty pleased about that! She was also incredibly active during the ultrasound, which we loved seeing too.
She, and her twin sister, had both shifted to be in a breech, or feet down position, so that meant that all those crazy kicks were from both of them, when I actually thought it was only baby A...
And what of her condition? Well, here's the scoop, as we understand it.
What our little goober has is called a Diaphragmatic Hernia. There are a couple things in our favour, we found out. First, the hernia is located on the left side, which has a better outcome than if it were on the right. Second, the liver has NOT also relocated to inside the cavity, and this is also very very good, we are told. The stomach and part of the bowels are there at this time, but the above is apparently good news. On the slightly negative side, the lung measurements were sub-par relative to the growth of the baby's head, which is not great, but then, last week, baby B was considered underweight, and this week, she'd had a growth spurt and there are no issues, so...we hope this will change.
What else? Well, the doctor, looking at our original IPS nuchal fold measurement, combined with today's measurements, said that baby B looks great, and the chance that she has Down's is still very low. So, rather than risk bringing on the onset of early labour by doing an amnio, he recommends against it but feels pretty positive that her chances are very good on that front. Congenital defects like this DO tend to drive up the chance of issues like Downs, but this type of issue doesn't affect the ratio/chances all that much. So this has helped us relax a bit too.
So what now? Well, now we meet with CHEO surgeons, neonatal specialists, and go for appointments and ultrasounds every two weeks at The General. We also wait to see how strong baby B can get, and how well her lungs are able to develop in this small space. But really, we wait for the delivery to see if she can breathe... From what we are told, there is about a 60-80% chance that she will be able to breathe enough to survive, that we can stablize her, and then get her into surgery to fix the problem. But really, we won't know this for sure until after she is born. Plain and simple. And not so simple, emotionally, but still better to know where this all stands.
The nice bonus today? The doctor has placed back on the table the possibility that we can try to deliver naturally, and not have to have a scheduled C-section. If both babies are head down, he doesn't see a reason why we cannot try, and if baby A is head down, he would still consider it. Mommy is VERY happy about that, and I am sure our doulas will be happy to know this also. If this doesn't work out, then great, but at least this is still a possibility.
So. Yes, we have a little girl here fighting for her life, but she has a good chance. And I just have to believe that because Mommy is strong, positive and in love with her two little miracles, that this will be enough. Only time will tell.
.jpg)
Cute as hell, right?
And what of her story? We have some more chapters to include, thanks to our long meeting with the doctor today at the General.
Where to start? Well, both babies have had a good growth week, and Baby B especially, so she is now no longer in a low weight concern category, so Mommy is pretty pleased about that! She was also incredibly active during the ultrasound, which we loved seeing too.
She, and her twin sister, had both shifted to be in a breech, or feet down position, so that meant that all those crazy kicks were from both of them, when I actually thought it was only baby A...
And what of her condition? Well, here's the scoop, as we understand it.
What our little goober has is called a Diaphragmatic Hernia. There are a couple things in our favour, we found out. First, the hernia is located on the left side, which has a better outcome than if it were on the right. Second, the liver has NOT also relocated to inside the cavity, and this is also very very good, we are told. The stomach and part of the bowels are there at this time, but the above is apparently good news. On the slightly negative side, the lung measurements were sub-par relative to the growth of the baby's head, which is not great, but then, last week, baby B was considered underweight, and this week, she'd had a growth spurt and there are no issues, so...we hope this will change.
What else? Well, the doctor, looking at our original IPS nuchal fold measurement, combined with today's measurements, said that baby B looks great, and the chance that she has Down's is still very low. So, rather than risk bringing on the onset of early labour by doing an amnio, he recommends against it but feels pretty positive that her chances are very good on that front. Congenital defects like this DO tend to drive up the chance of issues like Downs, but this type of issue doesn't affect the ratio/chances all that much. So this has helped us relax a bit too.
So what now? Well, now we meet with CHEO surgeons, neonatal specialists, and go for appointments and ultrasounds every two weeks at The General. We also wait to see how strong baby B can get, and how well her lungs are able to develop in this small space. But really, we wait for the delivery to see if she can breathe... From what we are told, there is about a 60-80% chance that she will be able to breathe enough to survive, that we can stablize her, and then get her into surgery to fix the problem. But really, we won't know this for sure until after she is born. Plain and simple. And not so simple, emotionally, but still better to know where this all stands.
The nice bonus today? The doctor has placed back on the table the possibility that we can try to deliver naturally, and not have to have a scheduled C-section. If both babies are head down, he doesn't see a reason why we cannot try, and if baby A is head down, he would still consider it. Mommy is VERY happy about that, and I am sure our doulas will be happy to know this also. If this doesn't work out, then great, but at least this is still a possibility.
So. Yes, we have a little girl here fighting for her life, but she has a good chance. And I just have to believe that because Mommy is strong, positive and in love with her two little miracles, that this will be enough. Only time will tell.
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