I was looking at a few things tonight and I thought it was worth posting this.
I recently heard some horrific things about abortion post 20 weeks and how it can be performed and I couldn't help but think that no mother would subject her foetus to that kind of death, no matter what its health concerns and prognosis. It was so distressing to me I'm not going to detail it here. If you really want to know, I'm sure you can find out.
It's a rare parent of a child with Trisomy 21 thesedays who would consider abortion. Thesedays it's those who decline the genetic screening because they wouldn't abort under any circumstances or those who choose to go ahead with their pregnancy despite their increased risk or diagnosis who deliver babies with Trisomy 21, excepting that very small percentage who have a false negative.
There are a few things that bother me about the whole genetic screening process.
Firstly, that there seems to be a push from inside the medical profession to find and terminate all pregnancies of babies with Trisomy 21. The attitude of the GP who thought I didn't understand the reason for genetic testing when I said I didn't see the point is indicative of a line out there coming from somewhere that it's a helpful service that we would all of course want to take advantage of. (Not so.)
Secondly, when a person receives a diagnosis or an increased 'risk' (or more appropriately 'likelihood') of a Trisomy 21 diagnosis, they are referred for 'genetic counselling'. According to reports from those on the facebook groups of which I am a member, many of these sessions amount to bullying from medical practitioners or genetic counsellors who try to convince the mother/parents that they are doing somebody a disservice (the baby, themselves, society) by carrying their baby to term and delivering as planned. Sometimes the patient's own practitioner keeps bringing it up, visit after visit, well after the 20 week mark. (A baby can survive at 22 weeks, I know of one who did, not sure exactly how early is the earliest baby to survive ever.)
The information given to these parents is not balanced or correct. They are given a bleak picture of a hopeless, 'mentally retarded' (meant as mentally slowed, not as a derogatory term, but thesedays insulting nonetheless), utterly dependent social outcast who will be a burden to all those around him for the rest of his days and who will either be plagued with illness and die early or outlive his parents which creates the worry of who will look after him when they're gone.
Maybe once that was a real picture, but not anymore. The achievements of adults out there who live satisfying lives despite their triplicate of chromosome 21 are mounting. When a person owns his own successful business I don't think we can call him a burden. A University would not risk their good name by bestowing an honorary PhD on somebody who was mentally deficient. Adults all over the world who carry Trisomy 21 are out there commanding the respect of their peers, despite the way they look, as are 'disabled' people of all kinds, worldwide.
The even more brilliant thing is that the therapies available now are the best that have ever been. There has never been a better time to welcome a child with Trisomy 21. If ever there was a time to be scared, which mothers of children or adults with Trisomy 21 will tell you there never was and they wish someone had told them that at the beginning, now is not that time. You can expect hard work, but a child born today with Trisomy 21 has so much opportunity to live a rich and full life as do we all - and yet not all of us manage that.
The information given to expectant parents should be balanced. They should have the opportunity to meet parents of babies or children with Trisomy 21 and adults who have the condition.
Next, the wording of the whole experience needs to be thrown out.
There is no 'risk' of Trisomy 21. There is a chance or a likelihood. Like there is a 'risk' of brown eyes.
Down syndrome is a dying term as medical professionals realise that it's a stigmatising label which doesn't help to treat the individual symptoms. It's Trisomy 21. They don't even know what the chromosome does, since the symptoms are so varied between individuals.
You terminate a pregnancy, you abort a foetus, or an embryo. You don't abort a pregnancy.
It's not pro-life or pro-choice. Choice and life are not opposites. It's pro-abortion or anti-abortion but even those points of view are rarely black and white.
(Pro-life or anti-life is a bit silly)
Let's not be weaklings about this subject. If a person is willing to end a foetus' life, call a foetus a foetus and an abortion an abortion. Don't say you're aborting a pregnancy because you're pro-choice. It's a grisly, horrible business. Doctors don't enjoy it. Mothers don't either. Let's have some guts one way or the other rather than glossing over the grim bits with euphemisms designed to make mothers feel less responsible by engaging in a very blurry act. I am not saying it is wrong here, I am saying that we need to confront what we are doing. We're dealing with life or death.
When the idea of having a child with Down syndrome entered my thoughts, it was because of a couple of anomalies in my ultrasound report. It made sense to me that if I had polyhydramnios and renal pelvis dilation in the foetus it was more likely than not that the cause for both would be the one thing. I googled. I found a medical article in a sea of not much which mentioned briefly that it could be a soft sign for Trisomy 21. (A soft sign is also called a marker)
The thought of my baby having this condition was unthinkable. I could not imagine it. I knew two people with the condition. One, a lady in her 40s lived a happy life but to be honest, did not command a great deal of respect from those I knew who knew her, including me. The other, a 6 year-old boy, was highly regarded by friends, family and strangers who knew of him. I knew it would not be terrible, but still I found the prospect scary.
When the surprise came I just went with what I knew, which was the modern version. I knew it wasn't hopeless, but that it was going to be hard work. I didn't expect how much it was going to change my life for the better. I didn't expect the rewards to be so great. There are so many soppy things out there about how a person's child with Down syndrome is their greatest treasure and how they have a smile that lights up their life 100 times a day. I honestly thought these people were deluded and creating a lie that they could snuggle up in and live in their own little fantasy world telling themselves that it was going to be alright, over and over again.
Here's what I've learnt so far.
My child is beautiful. Regardless of her Trisomy 21-related physical characteristics, she's a cute baby and she gets comments wherever we go. (No cries of 'Dear God, what IS that THING?' from anyone so far.) Aside from her face, she's a beautiful being who is very loving and so very understanding and patient. (And 'they' are not 'all that way')
The rewards really are that great.
Over the last six months I have been privileged enough to meet scores of other parents who are all bringing up children with Trisomy 21. They are for the most part the loveliest group of people I have met and the groups feel like family.
I have been introduced to therapies that can help not only my youngest daughter, but my older two and my husband too, with seizures, sleep walking, repeated tripping, hypersensitive hearing, reading problems....
I have experienced one of the extreme ends of life in the hospital with other parents of sick children and I have been privileged to access a new perspective on life. As it is when you have children and realise that life's not all about you, when you have children whose needs are extreme, you further realise that what's most important is that they are alive, then their ability to approximate normal and anything further than that is theirs to achieve if they want, not if you want.
Maybe it's just me, but I have also regained the ability to see the person inside the 'disabled' body, regardless of how they look. This means that so much more of the world is open to me and I feel much more comfortable in life.
I also appreciate that my lot in life is so much easier than that of a relative whose child has cerebral palsy, for instance, or a mother whose child hates her and wants nothing to do with the family, or whose child is terminally ill.
My family is now eating much more healthily because we have to. We're likely to enjoy the benefits of this for many years to come.
Without brushing a person off with well-meaning cliches like 'they're so loving' or 'they're so well-natured' like a breed of dog, (and I heard a great line by someone the other week, 'my child is not a puppy. He is not here to fill your life with gladness' or words to that effect), it's not only just 'not that bad' to have a child with Trisomy 21, it's basically just having a normal child who looks a bit Asian and has some developmental delays, maybe a speech impediment - which is really not that unusual!! (And possibly some other medical problems, but they're not insurmountable.) Any inbuilt negative reaction society has to people with Trisomy 21 are ours as a society to change, and this will happen over time, as more and more adults with the condition appear out and about living their lives, working alongside us and commanding our respect.
The things I was reading tonight were comments made by pregnant women on forums who had seen the very same markers as I'd seen and had been told it could indicate a chromosome disorder but not which one - odd. They were freaking out at the prospect of a sick child and looking for stories that it could be normal, which was what I looked for. I looked for ways in which it could turn out normal.
If it had, I guess life would be simpler, but looking back and looking forward, I'd be giving up more if I had the same old normal scenario. I'd be living a life with less challenge. Is that what we really want?
I really think that if an expectant mother was given a true picture of life with a child who has Trisomy 21, she would think even longer and harder about ending the life of her foetus. I suspect that many more would choose to forge ahead and see what life would bring. It is not my place to judge anyone for their decisions and I do not presume to, but I do think that a truly informed decision would be a different one to a partially informed and biased one.
I also think that if I was in charge of genetic counselling, I'd just get the parents to google the following phrase: "I regret having my child with Down syndrome".
That is all.
Tuesday, 9 July 2013
Wednesday, 3 July 2013
We're back!
Hi everyone!
As I suspected, my every second has been accounted for since the course, so this is my 'very soon' post about the Institutes for the Achievement of Human Potential "What to do About Your Brain Injured Child" course. (This was brought to Melbourne by the fabulous people at Grow Foundation.) http://www.growfoundationforkids.org.au
Before I get into it, this course is named after a book. The book was written many years ago in response to a huge demand for the above Institutes' services and the realisation from the founder that parents are a child's best therapists. It was found that many conditions with specific names (such as Cerebral Palsy, Autism, ADHD and even Down Syndrome, among many others) responded to the treatments that had been effective for stroke patients and the like.
Rather than referring to each condition by its own syndrome name, which didn't help treat the condition, they found it more helpful to refer to everyone as 'brain injured' or 'hurt', because treating them as such more often got them better. I've heard some parents react to the name negatively, but there's really no need.
Anyway, I decided to stay over at the hotel where the course was held, even though it was in my home city. The idea of getting out the door before 7.30 on a school morning, fed baby in tow, after arriving home from each course at about 8.30pm unfed seemed a bit far fetched. That was a really really good idea. There was homework every night and I struggled to get to bed before midnight most nights!
A few of us at the course had met previously online via a facebook group and it was like high school, with homework posts going on between us from our different hotel rooms.
The course itself was A-M-A-Z-I-N-G.
They talk on the first day about how the brain grows by use. By about the end of day 1 I could tell my brain had been used, because it just felt bigger. It seriously felt like there was less room in there. By the end of the week I could have sworn my head circumference had increased.
The course is done by video. They have recorded lectures given by key personnel at the institutes, including the founder, Glenn Doman, who sadly passed away in May this year aged 93. I have heard that he was lecturing up until the end of last year, which is a mighty effort. As far as I know, the video version is taken on tour around the world to ensure that the course is the same no matter where you do it.
Now I have to say that this was a big learning experience for me, since I have studied a lot about the mind, but never given much thought to the brain and how it works. Many people and disciplines confuse the two, but I'm certain that they are not the same. Either way, this course simply deals with the brain, not the mind. More like a person's function, rather than their personality. It was fascinating.
Glenn in one of his lectures mentioned that one time a man from Australia attended the course and wrote to him afterwards saying that he had worked out that the course could be delivered in a fraction of the time if one simply removed all the stories.....but the stories are what makes the course.
The sheer number of good news items and miraculous anecdotes is brilliant. There really is hope everywhere you turn. It's almost impossible that nothing could be done for a child whose parents are willing and on board to run the program the way it should be run.
So I went from being a complete brain-novice to knowing the names of the basic parts and how they seem to relate to development, then working out approximately where the injury is, then working out what's needed most urgently in terms of a program and working out how to get started.
There are so many factors to consider in terms of the environment and Jacinta's nutrition. We'd started on this already, quitting wheat a couple of months ago and cutting right back on dairy. When you really stand back and take a look, the food we all eat thesedays and the world we live in is SO toxic! 100 years ago, if you'd showed someone a packet of Cheezels and told them what was in it, they'd have looked at you like you were mad for eating them and politely declined one.
So it looks like we're going super-hippy on the foodstuffs, which is not that bad really. As my husband said, "It can't be all that bad if it means I get to eat steak every night.". It's also got me realising how my mum was again ahead of her time. The one thing they said on the food stuff was that if we did nothing else, if we ignored every piece of advice they gave us, we should at least just throw out all the heated oils we were using in food and not cook with anything except coconut oil. Just get cold pressed olive oil for salad. Apparently these oils go toxic when they're heated and even the extraction process heats them enough to do this.
I was cooking the other night and thought "I could actually save the fat from the meat I cook and use it again in the next meal, but how would I store it?", and then recalled an image from my childhood of coffee lids with fat in them in a little row next to the sink. This from an age when Mum only used olive oil for salad dressing, before we convinced her to use it in cooking. Bloody know-it-all kids!
So now I own a packet of quinoa, and have pronounced the word several times loudly and therefore am an expert. I have tried some experimental cooking, the least successful resulting in a kind of chocolate scrambled egg with some fairly raw quinoa through it, the most successful being a sort of maple syrup pudding with dried fruit which was quite delicious, but being the product of not-quite-terrible things that are still being evicted from the pantry will probably never grace my kitchen bench again.
I have also discovered that although I take my tea strong, with a little milk, and always will even if I never have a sip of milk again, a weak black tea (particularly with some lemon and a little sugar) is actually quite good!
I'm even amazed to see that in our house, where we used to go through a good 4 litres of milk every couple of days (we'd buy them in 4s from the 7eleven where it's 2 for $5 and you can run in and out in 20 seconds) we've now used up the last of the last cow milk and no-one's much batted an eyelid. My eldest polished it off last night without so much as an 'oh my goodness, last cow milk ever'.
It helps, of course, that we seem to have discovered the cause of those seizures mentioned in the first blog post which have been coming and going a bit lately, and that the remedy seems to be eating a strict diet of non-allergenic foods and water (plus rest).
Apart from the food stuff, we have to keep the house clean - which is a good thing, because I really want to but if I have to it's more likely. I've ordered one of those little vacuum robot thingies so I'm sure that will keep us entertained as it scuttles around the house of an evening picking up crumbs and hair ties.
I need to keep Jacinta on the floor as much as I can to give her a chance to catch up mobility-wise. It's been fairly widely acknowledged that Jacinta's well advanced in terms of social, audiological, visual, language development, but that mobility is delayed probably because of the heart issues and being on her back like a stranded turtle for half her life.
I'm brainstorming ways to keep the floor warm, having never realised that the reason my feet get so cold in winter is that the floor is actually much colder than the rest of the room! Five minutes after I put her down, she's freezing. I found a fluffy sheepskin at IKEA last week and it's brilliant for the short term. It's the wrong surface for moving, but at least she can be down there and keep warm, plus she can grab onto the wool strands to pull a bit and it's stimulating all her nerves wherever her skin touches it. Keeping her safe from her siblings' displays of love and affection is the next challenge!
Then there's the whole crawling program and the reading program, which is very exciting. I want to get a lot of this going with all three of my daughters. We made the first card for our reading program at the course and took it home.
Then there's the swimming program. There are all sorts of things we can do, a little bit at a time many times a day, to get Jacinta rocking and rolling - or even better, crawling and walking!
One very interesting thing which I don't think happens a lot among those who attend the course is that on evaluating Jacinta's areas of ability (according to the chart which shows a person's developmental profile), she came out ahead overall for her age. This puts her in a category other than 'brain injured'. My goal when she was born was to apply what we could to keep her ahead of any delay that was meant to happen. So far so good. My dream when I went to the course was that she'd be not that bad and not have to have a really full-on program and we could do it in a few hours a day. Being that she fits into the category of a well child (for now), and she's under 1 so a couple of the things are for bigger kids, it looks as though we will get away with doing everything we want to do with her and probably in a few hours if we want to do it that way, which is good since I want to include elements for all three children.
Also, it needs to be said, the Institutes are adamant that they will 'fight for your right to say "no"'. They want you to do the whole shebang and get the best possible results, but they're not about to guilt you into doing anything you can't or don't want to do. If you can do one thing, they'd prefer you do it right and consistently then trying to do lots and doing it badly or sporadically, is the impression I got. This was a big relief, to know that I am the master of the schedule we set for Jacinta. Possibly the further we get down the line, the more she'll need and the more we'll have to include, but it's a nice gradient for us at least.
So for now I'm preparing to become a social pariah, bringing my own milk wherever I go and declining foodstuffs at every turn. Thinking wistfully of the holiday we had just two weekends ago, where we ended off with a trip to the Yarra Valley Chocolaterie and Ice Creamery. The girls played on the sprawling lawn, I had to chase after them to stop the 2yo heading onto the highway - leaving my baby with a kind stranger, so much fun. Actually, the thought of chocolate and ice cream makes me feel a bit sick, but still I can dream of this wicked utopia.
We told my husband we'd take him there next time. Maybe not.....
As I suspected, my every second has been accounted for since the course, so this is my 'very soon' post about the Institutes for the Achievement of Human Potential "What to do About Your Brain Injured Child" course. (This was brought to Melbourne by the fabulous people at Grow Foundation.) http://www.growfoundationforkids.org.au
Before I get into it, this course is named after a book. The book was written many years ago in response to a huge demand for the above Institutes' services and the realisation from the founder that parents are a child's best therapists. It was found that many conditions with specific names (such as Cerebral Palsy, Autism, ADHD and even Down Syndrome, among many others) responded to the treatments that had been effective for stroke patients and the like.
Rather than referring to each condition by its own syndrome name, which didn't help treat the condition, they found it more helpful to refer to everyone as 'brain injured' or 'hurt', because treating them as such more often got them better. I've heard some parents react to the name negatively, but there's really no need.
Anyway, I decided to stay over at the hotel where the course was held, even though it was in my home city. The idea of getting out the door before 7.30 on a school morning, fed baby in tow, after arriving home from each course at about 8.30pm unfed seemed a bit far fetched. That was a really really good idea. There was homework every night and I struggled to get to bed before midnight most nights!
A few of us at the course had met previously online via a facebook group and it was like high school, with homework posts going on between us from our different hotel rooms.
The course itself was A-M-A-Z-I-N-G.
They talk on the first day about how the brain grows by use. By about the end of day 1 I could tell my brain had been used, because it just felt bigger. It seriously felt like there was less room in there. By the end of the week I could have sworn my head circumference had increased.
The course is done by video. They have recorded lectures given by key personnel at the institutes, including the founder, Glenn Doman, who sadly passed away in May this year aged 93. I have heard that he was lecturing up until the end of last year, which is a mighty effort. As far as I know, the video version is taken on tour around the world to ensure that the course is the same no matter where you do it.
Now I have to say that this was a big learning experience for me, since I have studied a lot about the mind, but never given much thought to the brain and how it works. Many people and disciplines confuse the two, but I'm certain that they are not the same. Either way, this course simply deals with the brain, not the mind. More like a person's function, rather than their personality. It was fascinating.
Glenn in one of his lectures mentioned that one time a man from Australia attended the course and wrote to him afterwards saying that he had worked out that the course could be delivered in a fraction of the time if one simply removed all the stories.....but the stories are what makes the course.
The sheer number of good news items and miraculous anecdotes is brilliant. There really is hope everywhere you turn. It's almost impossible that nothing could be done for a child whose parents are willing and on board to run the program the way it should be run.
So I went from being a complete brain-novice to knowing the names of the basic parts and how they seem to relate to development, then working out approximately where the injury is, then working out what's needed most urgently in terms of a program and working out how to get started.
There are so many factors to consider in terms of the environment and Jacinta's nutrition. We'd started on this already, quitting wheat a couple of months ago and cutting right back on dairy. When you really stand back and take a look, the food we all eat thesedays and the world we live in is SO toxic! 100 years ago, if you'd showed someone a packet of Cheezels and told them what was in it, they'd have looked at you like you were mad for eating them and politely declined one.
So it looks like we're going super-hippy on the foodstuffs, which is not that bad really. As my husband said, "It can't be all that bad if it means I get to eat steak every night.". It's also got me realising how my mum was again ahead of her time. The one thing they said on the food stuff was that if we did nothing else, if we ignored every piece of advice they gave us, we should at least just throw out all the heated oils we were using in food and not cook with anything except coconut oil. Just get cold pressed olive oil for salad. Apparently these oils go toxic when they're heated and even the extraction process heats them enough to do this.
I was cooking the other night and thought "I could actually save the fat from the meat I cook and use it again in the next meal, but how would I store it?", and then recalled an image from my childhood of coffee lids with fat in them in a little row next to the sink. This from an age when Mum only used olive oil for salad dressing, before we convinced her to use it in cooking. Bloody know-it-all kids!
So now I own a packet of quinoa, and have pronounced the word several times loudly and therefore am an expert. I have tried some experimental cooking, the least successful resulting in a kind of chocolate scrambled egg with some fairly raw quinoa through it, the most successful being a sort of maple syrup pudding with dried fruit which was quite delicious, but being the product of not-quite-terrible things that are still being evicted from the pantry will probably never grace my kitchen bench again.
I have also discovered that although I take my tea strong, with a little milk, and always will even if I never have a sip of milk again, a weak black tea (particularly with some lemon and a little sugar) is actually quite good!
I'm even amazed to see that in our house, where we used to go through a good 4 litres of milk every couple of days (we'd buy them in 4s from the 7eleven where it's 2 for $5 and you can run in and out in 20 seconds) we've now used up the last of the last cow milk and no-one's much batted an eyelid. My eldest polished it off last night without so much as an 'oh my goodness, last cow milk ever'.
It helps, of course, that we seem to have discovered the cause of those seizures mentioned in the first blog post which have been coming and going a bit lately, and that the remedy seems to be eating a strict diet of non-allergenic foods and water (plus rest).
Apart from the food stuff, we have to keep the house clean - which is a good thing, because I really want to but if I have to it's more likely. I've ordered one of those little vacuum robot thingies so I'm sure that will keep us entertained as it scuttles around the house of an evening picking up crumbs and hair ties.
I need to keep Jacinta on the floor as much as I can to give her a chance to catch up mobility-wise. It's been fairly widely acknowledged that Jacinta's well advanced in terms of social, audiological, visual, language development, but that mobility is delayed probably because of the heart issues and being on her back like a stranded turtle for half her life.
I'm brainstorming ways to keep the floor warm, having never realised that the reason my feet get so cold in winter is that the floor is actually much colder than the rest of the room! Five minutes after I put her down, she's freezing. I found a fluffy sheepskin at IKEA last week and it's brilliant for the short term. It's the wrong surface for moving, but at least she can be down there and keep warm, plus she can grab onto the wool strands to pull a bit and it's stimulating all her nerves wherever her skin touches it. Keeping her safe from her siblings' displays of love and affection is the next challenge!
Then there's the whole crawling program and the reading program, which is very exciting. I want to get a lot of this going with all three of my daughters. We made the first card for our reading program at the course and took it home.
 |
| Not happy with the J or the t.... |
One very interesting thing which I don't think happens a lot among those who attend the course is that on evaluating Jacinta's areas of ability (according to the chart which shows a person's developmental profile), she came out ahead overall for her age. This puts her in a category other than 'brain injured'. My goal when she was born was to apply what we could to keep her ahead of any delay that was meant to happen. So far so good. My dream when I went to the course was that she'd be not that bad and not have to have a really full-on program and we could do it in a few hours a day. Being that she fits into the category of a well child (for now), and she's under 1 so a couple of the things are for bigger kids, it looks as though we will get away with doing everything we want to do with her and probably in a few hours if we want to do it that way, which is good since I want to include elements for all three children.
Also, it needs to be said, the Institutes are adamant that they will 'fight for your right to say "no"'. They want you to do the whole shebang and get the best possible results, but they're not about to guilt you into doing anything you can't or don't want to do. If you can do one thing, they'd prefer you do it right and consistently then trying to do lots and doing it badly or sporadically, is the impression I got. This was a big relief, to know that I am the master of the schedule we set for Jacinta. Possibly the further we get down the line, the more she'll need and the more we'll have to include, but it's a nice gradient for us at least.
So for now I'm preparing to become a social pariah, bringing my own milk wherever I go and declining foodstuffs at every turn. Thinking wistfully of the holiday we had just two weekends ago, where we ended off with a trip to the Yarra Valley Chocolaterie and Ice Creamery. The girls played on the sprawling lawn, I had to chase after them to stop the 2yo heading onto the highway - leaving my baby with a kind stranger, so much fun. Actually, the thought of chocolate and ice cream makes me feel a bit sick, but still I can dream of this wicked utopia.
Saturday, 15 June 2013
Stopping by on the way to the course....
Hi all,
very excited because tomorrow is the start of the Institutes for the Achievement of Human Potential course in Melbourne!!
This means I have no time at all!!
Quick update:
Jacinta moved herself this week! That thing where you put your baby down and come back, do a double-take and think, "did I leave you like that?", that happened.
What's more, she had a go on her crawling track and she got somewhere!! (It's on a decline to give her help, but it's movement and we'll take it!)
I came across this brilliant blog post today though and I thought I'd pass it on, particularly for any other Trisomy 21 parents or prospective parents out there.
http://sippinglemonade.com/dear-mom-with-a-prenatal-down-syndrome-diagnosis/
I'll report back really soon on how the course goes!
And here's a 'hi' from Jacinta!
See you soon!!
very excited because tomorrow is the start of the Institutes for the Achievement of Human Potential course in Melbourne!!
This means I have no time at all!!
Quick update:
Jacinta moved herself this week! That thing where you put your baby down and come back, do a double-take and think, "did I leave you like that?", that happened.
(I left her parallel to the floorboards...)
What's more, she had a go on her crawling track and she got somewhere!! (It's on a decline to give her help, but it's movement and we'll take it!)
I came across this brilliant blog post today though and I thought I'd pass it on, particularly for any other Trisomy 21 parents or prospective parents out there.
http://sippinglemonade.com/dear-mom-with-a-prenatal-down-syndrome-diagnosis/
I'll report back really soon on how the course goes!
And here's a 'hi' from Jacinta!
See you soon!!
Monday, 3 June 2013
Kicking goals!
Well, it looks like the Pies have won again this week. (Overseas readers, google AFL, Collingwood Magpies). This always makes me happy! Preparing to lose readers over that statement - such is life!
I thought I'd do this post in Black and White to celebrate. For a change.
And they're not the only ones who've been kicking goals.....(seamless link....)
WE'VE GOT THE NASOGASTRIC TUBE OUT!!!!
I don't know how much I've been chronicling (that word just looks wrong, but spellchecker's letting it through) Jacinta's feeding issues...aside from on facebook that is. The 'expressing' posts were getting to a point where they almost outnumbered the 'where did my sleep go?' posts.
From the first hour of her life she was on a nasogastric tube. That was the first tiny kick in the guts for me, the point where I relinquished control of her care - temporarily. Not being able to ensure that what entered my baby's body and how was entirely up to me was a massive shift when my older children had been exclusively breastfed until solids, skipped the birth Hep B shot (since they weren't going to creche and we were advised that it really wasn't necessary in that case) and had the Vit K orally.
So through all the NICU and Special Care time, the goal was always to go home without the NG tube. Trouble was that she was a really good sleeper. My little munchkin's been sleeping through from birth. Sometimes that meant sleeping through the whole day when her body clock was on England time, but there was always a 12 or so hour period where she would not be woken for love or money. We never actually offered her money, but there was always plenty of love on offer!
When she was discharged from the Women's at four weeks of age, it was to Box Hill with the intention of getting her off the tube then home. This dragged on for 10 days until we very strongly hinted that we would prefer it if we could go home now and we'd just do the tube thing. Some people do the hospital for months and they have to, but we had had enough. We gave it a try to see if I could possibly wake her for feeding overnight since they did try the bottle each night but didn't get much action, but she wasn't having a bar of it.
So we were finally discharged not long after a conversation where the Nurse Unit Manager said "we really DO understand that you want to take her home as soon as possible..." since it really felt to us like the message wasn't getting through and we did have to ask obvious questions like " so if she's going home with the NG tube and she needs to see the heart specialist at the Children's on Thursday and we need 24 hours to get it organised and it's now Tuesday, why are we talking about discharging on Friday?" To which the reply was, "oh yes, I suppose we could discharge you on Thursday morning...", which was better than Friday!
Sometimes in health care things do go round and round in circles if you're not watching out and taking a bit of control of things yourself. If everyone's being cautious and waiting for everyone else to decide, things can take a lot longer than they have to.
So we went home with the NG tube still in, I was expressing every 3-4 hours (which took about 40 mins), feeding her (40 mins) and topping up by tube (which took 30-60 mins depending on how many interruptions there were) every 3-4 hours. She lost weight. She lost weight. Then she didn't lose weight, but she didn't gain any. We had the midwives coming out from the hospital to weigh her every couple of days.
It was a little frustrating, since we were having to go backwards. When we were discharged, we'd finally made it to fully breastfeeding with little or no topping up via the tube. This started reversing to more and more topping up and less and less breastfeeding. We had some gains again here and there and always when I documented every feed, how long, how many mls, every wee & poo. We worked out a basic formula and went on from there, with the MCH nurse now, and she started losing weight again. Started keeping strict records and we went up again, then all hope went out the window when she got a cold and we were back onto pretty much full NG feeds with a token breastfeed of about 5 mins once a day to keep in practise. It was about this point where I feebly asked the cardiologist if it looked like losing the tube had been put on the back burner and he said it would have to wait til after the surgery. Sigh.
From that point she started on diuretic medication too which also made her lose weight so the paediatrician stepped in and prescribed poly-joule (which I just can't stop myself calling polyjuice - Harry Potter tragic!), which is basically powdered junk food designed to make you put on weight. This was to be added to her EBM (which we all remember is what we call breast milk) at one scoop per 50ml. She told me to watch out for diarrhoea. I looked at the amount I was putting into her feeds once I got it home and thought it seemed a lot.
She woke up the morning after I started supplementing looking a little bit like a drug addict. Dark circles under her eyes, not brilliantly alert. I queried this amount with the MCH nurse. She rang the home base (she visits us at home) who didn't have any further information on dosage. I continued to give it as prescribed. By the end of that day, I decided that she was not right and worsening and the sunkenness of her fontanelle indicated that the diarrhoea she had displayed had caused dehydration and so I whisked her off to hospital where they pumped her back up full of liquid again. Next morning she was reinflated like a jumping castle after the wind has dropped.
Since the cardiologist had been making noises about admitting her if she hadn't started gaining weight, they kept her in to sort out the whole feeding thing. The dietician indicated that normally they'd prescribe 1 scoop per 200 ml, so she'd been having 4 times the usual dose. Ooops! (The next time I saw the paediatrician she indicated that she needed to apologise for the mix-up - "one scoop, one teaspoon..". No lasting damage so we'll let that one go. She's a good Dr.)
So they sent her home and hurried up the surgery which happened the next week. After the surgery she was on about 10-15 different drugs....my toxic baby! All necessary, all very temporary. One interesting thing I learned when I asked about the morphine is that they give it after open heart surgery to stop the baby from breathing on her own so they can regulate it. Apparently that's what kills drug addicts when they overdose on heroin - they stop breathing. I guess that's just one of the questions that doesn't come up in life for most of us.
The morphine and oxy-codiene (I think that was what it was called....) combined with the diuretics to stop any fluid collecting near the lungs meant that her gut was dry as a bone and nothing was moving. We tried breastfeeding again as soon as she had enough tubes and wires out, but it was just too upsetting. She tried and would get really upset. When she was first born she would pass a bowel movement with every feed so I assumed each time it was stimulating her bowel. I could see that something was really bothering her although she clearly wanted to feed again.
Eventually after a couple of days of holding off, since I didn't want to start any neverending cycles of constipation/laxatives if it could be avoided, it got ridiculous. I think I held her pretty much 15 hours straight for two days and she wasn't feeling good at all. Crying a lot and through the tears making two distinct sounds, "mumumumum", and "owowowowow". Infer from that what you like! We gave her some lactalose down the tube, since she'd had way too much physical interference in that 24-hour period and she'd had enough. Finally, overnight, the floodgates opened.
Next morning, when she'd finally ticked the 'done a poo' box, they asked me how I felt about going home that day. I said, "not brilliant", since I hadn't anywhere near established feeding and had just spent the past two days doing nothing but holding my baby! To their credit the head Dr said, "OK, maybe tomorrow then", without a second thought and after he'd gone the nurse said, 'good answer. If you'd said it was ok, you'd be out of here today'. Phew!
Things improved a lot that day and although Jacinta wasn't feeding perfectly, still very patchy and mostly tube fed, she was much happier and we even made it downstairs to see the fishies and have a coffee.
By the next day it was pretty clear that we were in a stable condition that could be maintained at home, still with the tube (sigh) but at least I could put her down. We got the OK and were discharged at about 6pm that night. Kane and her big sisters picked us up and since it was dinner time we went down to the only thing open on the ground floor at 6pm on Saturday....McDonalds. And for the first time in months, Jacinta had a full, decent, proper feed. She actually didn't seem to need topping up. Woohoo!
So from that point on, we kind of got into a routine. I expressed still overnight to keep my supply going and tube fed as before. Her weight was still a little bit stagnant but then we found the infection. The wound had a bit of stitch still left in it which caused an infection so she was on antibiotics for a couple of weeks. During this time, I decided to see what she would do if left to go without tube feeds. I found that she would wake if she was hungry and not wake if she wasn't. So I tried a dream feed (bless your cotton socks Tizzie Hall!). She was awesome at the dream feed! (My eldest would never rouse for one and my second would wake up fully.) This meant I could drop the middle of the night feed and stop the middle of the night express! Once she was off the antibiotics, she started putting on the weight just as any 5 month-old would be expected to do.
After weeks of 'nearly!', when she looked at me last weekend and tugged at the tube, I said "oh alright then." I undid the last tiny bits of tape that hadn't come up yet and let her take it out. I was pretty sure she wouldn't need it back in. The nurse came and said 'she's got the tube out!'. I said it came out over the weekend and I'd double check with the cardiologist and paed that week to see what they wanted to do. The cardiologist said 'the tube's out!', and I said, 'not officially...'.
'Not officially?', he replied.
'I'll see what the paed says tomorrow', I answered.
The paediatrician wasn't there! It was a locum who was happy with her weight gain and fine with the tube staying out. Yay!!! What's more no-one wants to see her for at least a month, which is much easier on our calendar.
This week she had the assessment from the health nurse. She assessed her for 4 month-old things. Apparently she's right up to date or ahead for things a normal 4 month-old would do, except gross motor skills. The nurse says that the heart condition and hospital/surgery business totally excuses any delay in development on that point and she's exactly where she'd be expected to be if she was a genetically usual child with a serious heart defect.
So she's kicking goals left, right and centre! (From well outside the 50m line....)
That's my girl!
I thought I'd do this post in Black and White to celebrate. For a change.
And they're not the only ones who've been kicking goals.....(seamless link....)
WE'VE GOT THE NASOGASTRIC TUBE OUT!!!!
I don't know how much I've been chronicling (that word just looks wrong, but spellchecker's letting it through) Jacinta's feeding issues...aside from on facebook that is. The 'expressing' posts were getting to a point where they almost outnumbered the 'where did my sleep go?' posts.
From the first hour of her life she was on a nasogastric tube. That was the first tiny kick in the guts for me, the point where I relinquished control of her care - temporarily. Not being able to ensure that what entered my baby's body and how was entirely up to me was a massive shift when my older children had been exclusively breastfed until solids, skipped the birth Hep B shot (since they weren't going to creche and we were advised that it really wasn't necessary in that case) and had the Vit K orally.
So through all the NICU and Special Care time, the goal was always to go home without the NG tube. Trouble was that she was a really good sleeper. My little munchkin's been sleeping through from birth. Sometimes that meant sleeping through the whole day when her body clock was on England time, but there was always a 12 or so hour period where she would not be woken for love or money. We never actually offered her money, but there was always plenty of love on offer!
When she was discharged from the Women's at four weeks of age, it was to Box Hill with the intention of getting her off the tube then home. This dragged on for 10 days until we very strongly hinted that we would prefer it if we could go home now and we'd just do the tube thing. Some people do the hospital for months and they have to, but we had had enough. We gave it a try to see if I could possibly wake her for feeding overnight since they did try the bottle each night but didn't get much action, but she wasn't having a bar of it.
So we were finally discharged not long after a conversation where the Nurse Unit Manager said "we really DO understand that you want to take her home as soon as possible..." since it really felt to us like the message wasn't getting through and we did have to ask obvious questions like " so if she's going home with the NG tube and she needs to see the heart specialist at the Children's on Thursday and we need 24 hours to get it organised and it's now Tuesday, why are we talking about discharging on Friday?" To which the reply was, "oh yes, I suppose we could discharge you on Thursday morning...", which was better than Friday!
Sometimes in health care things do go round and round in circles if you're not watching out and taking a bit of control of things yourself. If everyone's being cautious and waiting for everyone else to decide, things can take a lot longer than they have to.
So we went home with the NG tube still in, I was expressing every 3-4 hours (which took about 40 mins), feeding her (40 mins) and topping up by tube (which took 30-60 mins depending on how many interruptions there were) every 3-4 hours. She lost weight. She lost weight. Then she didn't lose weight, but she didn't gain any. We had the midwives coming out from the hospital to weigh her every couple of days.
It was a little frustrating, since we were having to go backwards. When we were discharged, we'd finally made it to fully breastfeeding with little or no topping up via the tube. This started reversing to more and more topping up and less and less breastfeeding. We had some gains again here and there and always when I documented every feed, how long, how many mls, every wee & poo. We worked out a basic formula and went on from there, with the MCH nurse now, and she started losing weight again. Started keeping strict records and we went up again, then all hope went out the window when she got a cold and we were back onto pretty much full NG feeds with a token breastfeed of about 5 mins once a day to keep in practise. It was about this point where I feebly asked the cardiologist if it looked like losing the tube had been put on the back burner and he said it would have to wait til after the surgery. Sigh.
From that point she started on diuretic medication too which also made her lose weight so the paediatrician stepped in and prescribed poly-joule (which I just can't stop myself calling polyjuice - Harry Potter tragic!), which is basically powdered junk food designed to make you put on weight. This was to be added to her EBM (which we all remember is what we call breast milk) at one scoop per 50ml. She told me to watch out for diarrhoea. I looked at the amount I was putting into her feeds once I got it home and thought it seemed a lot.
She woke up the morning after I started supplementing looking a little bit like a drug addict. Dark circles under her eyes, not brilliantly alert. I queried this amount with the MCH nurse. She rang the home base (she visits us at home) who didn't have any further information on dosage. I continued to give it as prescribed. By the end of that day, I decided that she was not right and worsening and the sunkenness of her fontanelle indicated that the diarrhoea she had displayed had caused dehydration and so I whisked her off to hospital where they pumped her back up full of liquid again. Next morning she was reinflated like a jumping castle after the wind has dropped.
Since the cardiologist had been making noises about admitting her if she hadn't started gaining weight, they kept her in to sort out the whole feeding thing. The dietician indicated that normally they'd prescribe 1 scoop per 200 ml, so she'd been having 4 times the usual dose. Ooops! (The next time I saw the paediatrician she indicated that she needed to apologise for the mix-up - "one scoop, one teaspoon..". No lasting damage so we'll let that one go. She's a good Dr.)
So they sent her home and hurried up the surgery which happened the next week. After the surgery she was on about 10-15 different drugs....my toxic baby! All necessary, all very temporary. One interesting thing I learned when I asked about the morphine is that they give it after open heart surgery to stop the baby from breathing on her own so they can regulate it. Apparently that's what kills drug addicts when they overdose on heroin - they stop breathing. I guess that's just one of the questions that doesn't come up in life for most of us.
The morphine and oxy-codiene (I think that was what it was called....) combined with the diuretics to stop any fluid collecting near the lungs meant that her gut was dry as a bone and nothing was moving. We tried breastfeeding again as soon as she had enough tubes and wires out, but it was just too upsetting. She tried and would get really upset. When she was first born she would pass a bowel movement with every feed so I assumed each time it was stimulating her bowel. I could see that something was really bothering her although she clearly wanted to feed again.
Eventually after a couple of days of holding off, since I didn't want to start any neverending cycles of constipation/laxatives if it could be avoided, it got ridiculous. I think I held her pretty much 15 hours straight for two days and she wasn't feeling good at all. Crying a lot and through the tears making two distinct sounds, "mumumumum", and "owowowowow". Infer from that what you like! We gave her some lactalose down the tube, since she'd had way too much physical interference in that 24-hour period and she'd had enough. Finally, overnight, the floodgates opened.
Next morning, when she'd finally ticked the 'done a poo' box, they asked me how I felt about going home that day. I said, "not brilliant", since I hadn't anywhere near established feeding and had just spent the past two days doing nothing but holding my baby! To their credit the head Dr said, "OK, maybe tomorrow then", without a second thought and after he'd gone the nurse said, 'good answer. If you'd said it was ok, you'd be out of here today'. Phew!
Things improved a lot that day and although Jacinta wasn't feeding perfectly, still very patchy and mostly tube fed, she was much happier and we even made it downstairs to see the fishies and have a coffee.
By the next day it was pretty clear that we were in a stable condition that could be maintained at home, still with the tube (sigh) but at least I could put her down. We got the OK and were discharged at about 6pm that night. Kane and her big sisters picked us up and since it was dinner time we went down to the only thing open on the ground floor at 6pm on Saturday....McDonalds. And for the first time in months, Jacinta had a full, decent, proper feed. She actually didn't seem to need topping up. Woohoo!
So from that point on, we kind of got into a routine. I expressed still overnight to keep my supply going and tube fed as before. Her weight was still a little bit stagnant but then we found the infection. The wound had a bit of stitch still left in it which caused an infection so she was on antibiotics for a couple of weeks. During this time, I decided to see what she would do if left to go without tube feeds. I found that she would wake if she was hungry and not wake if she wasn't. So I tried a dream feed (bless your cotton socks Tizzie Hall!). She was awesome at the dream feed! (My eldest would never rouse for one and my second would wake up fully.) This meant I could drop the middle of the night feed and stop the middle of the night express! Once she was off the antibiotics, she started putting on the weight just as any 5 month-old would be expected to do.
After weeks of 'nearly!', when she looked at me last weekend and tugged at the tube, I said "oh alright then." I undid the last tiny bits of tape that hadn't come up yet and let her take it out. I was pretty sure she wouldn't need it back in. The nurse came and said 'she's got the tube out!'. I said it came out over the weekend and I'd double check with the cardiologist and paed that week to see what they wanted to do. The cardiologist said 'the tube's out!', and I said, 'not officially...'.
'Not officially?', he replied.
'I'll see what the paed says tomorrow', I answered.
The paediatrician wasn't there! It was a locum who was happy with her weight gain and fine with the tube staying out. Yay!!! What's more no-one wants to see her for at least a month, which is much easier on our calendar.
This week she had the assessment from the health nurse. She assessed her for 4 month-old things. Apparently she's right up to date or ahead for things a normal 4 month-old would do, except gross motor skills. The nurse says that the heart condition and hospital/surgery business totally excuses any delay in development on that point and she's exactly where she'd be expected to be if she was a genetically usual child with a serious heart defect.
So she's kicking goals left, right and centre! (From well outside the 50m line....)
That's my girl!
 |
Jacinta sleeping through her first footy match c/o Heartkids Victoria. |
Sunday, 19 May 2013
Perspective
So we're home now.
I always feel like I should be able to describe what's happened in one word. As in, "it was so ....." or "it was such a ....". There should be a word to sum it all up. Sometimes though, an experience is so complex that one single word just won't do - sometimes supercalifragilisticexpialidocious actually doesn't cut the mustard.
I guess it all goes back a bit further than just this last hospital visit. I think it's been coming on for a while now. My perspective has changed. Not just a little bit. It's like I was standing looking at Melbourne from the top of Mt Dandenong and now I'm looking at it from the Eureka Skydeck, at night.
(For those non-Melbournians, Mt Dandenong is on the edge and the Eureka Skydeck is in the middle...)
I'm not trying to insinuate that I am now all-seeing and all-knowing, but certainly that my experience of people and situations is so much broader than it used to be and is necessarily much more accepting of diversity.
If I think back even 9 months, I was just wishing I could see more of my husband, hoping to buy a house in the not too distant future, thinking the car I have would do for now but be due for replacement as soon as the children stop smearing horrible substances all over the inside. My own acceptable standards for my beautiful, smart, funny, loving daughters were through the roof - regardless of what they thought. I was in many ways, deep deep down, striving for my perfect life, one with no great deviations from the norm and one in which we in my family were all doing better than everyone else. (Just being honest here. There is a slight competitive streak in me......) Again, no consultation with my family members on the competitive thing, just my own slightly unhinged goals.
It was this mindset which took the biggest blow when Jacinta was born - and deservedly so. Lucky, very lucky that I had decided before she was born that she was beautiful. I shudder to think how I might have tainted the first few days or weeks of my daughter's life with my own disappointment or dashed hopes, even ideas that this scenario was unacceptable - I did say slightly unhinged!
And looking back now I also feel a little ashamed that I let it get that far. It's certainly not how I was brought up. In our family, love was at the centre of everything pretty much. Sometimes it was tough love, but it was never absent. We never saw an ounce of hate pass between our parents or from our parents to us. Never a moment of resentment. Never a sarcastic joke at our expense. If ever one of us even joked that our parents didn't care about us, our Dad in particular would get very serious about making it very clear that they loved each and every one of us.
My parents extended the hand of friendship to others in need of friends. This sometimes made for interesting Christmas lunches. Our family friends included a family of Vientamese boat people who asked directions of my father one day in the '70s when he had driven the train they had caught, which resulted in him taking them out to buy a heater on the weekend. Incidentally, the eldest daughter of this family was working as a doctor across the hall at the Women's when Jacinta was there. Small world!
The story of how my parents met is very telling on this subject. My mother and father were both in a bushwalking club. They did the usual, checking each other out on the bus ride to the walk, getting to know each other as they walked along. The second time they saw each other, my father stopped short and asked my mother "what happened to your leg?". She was over the moon!
When she was a baby she had had a birthmark on her leg which worried the "stupid woman doctor" as my grandfather would call her. When she was still small, they x-rayed it and somehow (my mother said it was too close to the bone) her leg stopped growing for about a year or so. This meant that there was a noticeable difference in length between her legs. She wore a prosthetic boot from about 2 years of age.
My father had been so enraptured by her company the first time that he hadn't noticed what I suppose many would perceive as a disability. My Mum went to great lengths from a young age to challenge anyone's idea that she was disabled. If anyone even gave the slightest hint that they thought she couldn't do something because of her leg, she'd be doing it to prove she could.
When we were growing up, I used to get sick of people at school asking about her leg and what happened - mostly because at home it never came up and it was annoying telling the same story over and over again. (Poor me!) We used to cheekily put on her boot while she was getting dressed and walk up and down the hall with it for fun - until she'd remind us that she was kind of stranded without it and needed it back please!
So I suppose physical abnormality was a part of life from the day we were all born. Yet somehow I became intolerant of it. Why? Hmmm....not sure. I guess it's foolishness to think that all abnormality is the same. It's not. A guy with tongs for hands is not the same as a guy with a face that is bright red and knobbly. They're individuals. I recall staring at a guy I saw once who had a boot just like my Mum's. It was the first and only time I've ever seen anyone other than my Mum with a built-up shoe. I was stunned to see that on someone other than Mum and a moment after, I wanted to run after him and explain why I was staring. It all seemed entirely unnecessary though, so I went on my way.
So over recent months, I have come to know many people with children who have a physical abnormality. I use the term 'abnormality' very loosely, since 'normal' is such a broad spectrum it seems wrong to put some within it and some out, but for now we have an agreement of what a normal body looks like and does, so anything outside of that is an abnormality for now.
The gradual process of exposure to sick children in hospital and the outpatient clinic attached to it has certainly changed my viewpoint. The Cardiology area of the Children's is a very sociable area. It's part of the culture that you can talk in the Parents' Lounge to anyone there and have a frank conversation about how long you've been there, why you're there and how it's all going.
Half the parents on that floor are in Intensive Care - Cardiology or General, Rosella Ward. The Children's has the best Cardiology department in the country so the cases are often very specialised and a lot of people are from out of town. The Intensive Care nurse who looked after Jacinta on her first day there said that in that ward they get the most unbelievable things. They get the things nobody would ever conceive of happening. Apparently her children have been on the receiving end of lectures that start with, "if you EVER think about climbing on top of a train while it's moving.......".
In the Rosella ward at the Children's, everyone's got a story. "My baby was born with Down syndrome, diagnosed at birth and had a septum which looked like swiss cheese plus the surgery was complicated so she had to go on bypass for a second time while they ligated the surprise extra blood vessel" is a pretty boring story. Five days in Intensive care - nothing. A week staying in hospital with your child - a holiday. At least you get a bed - and meals? Luxury! Your family is staying at home, which is a 30 minute drive from the hospital - lucky!! You haven't seen your children for two days? The lady at the table with you hasn't seen hers for a month. If you haven't been on ECMO, you're small fry. Really.
ECMO is a heart/lung bypass machine which can be run outside of the operating theatre. There are specially trained Intensive Care nurses who can use this machine. If your child is on this machine, it's serious. The Children's has the largest ECMO team in the country. If you live anywhere but Melbourne or Brisbane, they have to come and get you and bring you here. They send a whole team over, with the machine to hook up the patient and bring them back. If it's a smaller hospital, they have to bring surgeons and cardiac nurses, anaesthetists, the whole lot to get it hooked up. Sometimes they have to make a judgement call based on the likelihood of the child's survival before they go, since the excess baggage fees are around $3,000. It's a grim business.
In the parents' lounge, the conversation could go something like, "were you on ECMO?",
"Yeah, just after surgery."
"We've been on it three times".
At the beginning you're talking about your surgery, then you talk to people who've had 6 operations since they came in a week ago. People whose babies have been an inch from death and they're talking about having 60% of their stomach removed, but they're alive and that's what counts. People who have what you've got and more. People who've got really rare chromosome disorders. The sort that are born once a year, not once a week. There are several children in the cardiac unit who have Trisomy 21. It was really nice to meet a couple of other Mums whose children were in a similar boat!
The day we were discharged, there were about 5 emergency calls in the rooms across the hall from us. We were already used to hearing the special alarm, the split second of silence before the clop clop of about twenty feet all heading to the room in question. On the second one we were in the middle of having an echocardiogram and the person doing it hung up her sonar thingy, excused herself and headed across to help. We hung out all gelled up while we wished every good thought for the guys across the hall who clearly needed our guy a lot more than we did right then.
Towards the end of our stay, I was talking to some people who'd come in around the same time as us and were going to be there a bit or a lot longer. None of us could believe how accepting we'd become of these surreal realities we'd all been faced with. Again and again the conversation about how our perspective on life had changed and how people in everyday life would think it was such a big deal, but in there it's just what's going on today. One lady told me she'd been at the hospital for over a year dealing with bone marrow issues. Her daughter was back in ICU for about the 6th time and had just had yet another surgical procedure. She lives several hours away and has a roster with a couple of other family members so that she can be home with her other children too. She says that if her daughter gets rushed to ICU and it's a school night, she'll wait til morning before coming in. It's so routine that she can't justify dropping everything.
What I think I like best about the vibe in there is that there's no 'you poor thing' much going on. It's all 'that sucks!', or 'me too', or 'that's fantastic!'. One day early on, a family I'd got to know had some awful news and things weren't looking good. We'd just moved to the ward and had some tubes out and things were looking up for us. When the father of this child told us what was happening and then asked how we were doing, I sort of looked at the floor and shuffled my feet. He said, "tell me! I want to hear good news!"And he was genuinely pleased that Jacinta was doing well. It seems hope is catching.
One thing which made me really smile was when I was talking to my eldest about a little boy whose parents I got to know quite well in the hospital. He's a tiny little bub and he has a chromosome disorder as well, called Smith-Lemli-Opitz Syndrome. (No, I can't pronounce it.) He has a whole selection of unusual things going on, one of which is an extra digit on each hand and foot. I was putting one of those wondersuits on Jacinta and excavating fingers from inside the sleeve to get it on right. I grumbled a little in wonderment about how tricky it is to get all five fingers through at the same time. "Imagine the trouble I'm going to have", said his Mum.
In the lounge another day, I was mentioning this baby to another lady I knew there who had a friend visiting. When I mentioned the extra fingers and toes, her friend's first comment was, "can they operate to fix that?", which stunned me slightly and I said, "or just leave it as it is". "Probably the least of their worries" added the woman whose friend it was, and who naturally understood that you're not in ICU for having six fingers. In defence of the friend, I could absolutely relate to that brand of thinking. I probably would have said the same thing last Christmas.
Once I got home I was talking to my eldest daughter about some people from the hospital and I mentioned the interesting thing about how this little boy has six fingers on each hand and six toes on each foot. "That's not fair!" she exclaimed, "I've only got five!".
In the hospital, everyone is flawed. Some are fatally flawed, which is a horrible thing and luckily in the cardiac section you're spared that mostly, since most kids are just out of a routine operation and will get better and go home.
Everyone has a story and everyone has scars, literally. Some have no hair. Some talk to you but are fixed looking at the ceiling while they speak perfectly normally. Half the kids are wheeling round their IV line. The other half are still stuck in bed.
What happened in hospital is I lost the discomfort that goes along with disability. Disability became normality.
http://www.facebook.com/disabledlifemedia
There is a facebook page called "Disabled Life Media" which I enjoy. There was a post up there on 7th March of a tweaked goofy grim smile and the caption along the lines of "the face people make when they see a disabled person in the street". I have to say, I cringed. I have pulled that very face at a wheelchair-bound person more than once. I was lost for a bit when I saw that. I obviously could never pull that face again, but what should I do?
I guess I will now just walk on by, say 'excuse me' if I need to get past or make a friendly remark if appropriate. I think though, disability in my world is no longer something which stands out in the way it did before. I may go backwards of course, but for now it's just part of the spectrum and the diversity of the landscape of Melbourne, wherever we are.
I always feel like I should be able to describe what's happened in one word. As in, "it was so ....." or "it was such a ....". There should be a word to sum it all up. Sometimes though, an experience is so complex that one single word just won't do - sometimes supercalifragilisticexpialidocious actually doesn't cut the mustard.
I guess it all goes back a bit further than just this last hospital visit. I think it's been coming on for a while now. My perspective has changed. Not just a little bit. It's like I was standing looking at Melbourne from the top of Mt Dandenong and now I'm looking at it from the Eureka Skydeck, at night.
(For those non-Melbournians, Mt Dandenong is on the edge and the Eureka Skydeck is in the middle...)
I'm not trying to insinuate that I am now all-seeing and all-knowing, but certainly that my experience of people and situations is so much broader than it used to be and is necessarily much more accepting of diversity.
If I think back even 9 months, I was just wishing I could see more of my husband, hoping to buy a house in the not too distant future, thinking the car I have would do for now but be due for replacement as soon as the children stop smearing horrible substances all over the inside. My own acceptable standards for my beautiful, smart, funny, loving daughters were through the roof - regardless of what they thought. I was in many ways, deep deep down, striving for my perfect life, one with no great deviations from the norm and one in which we in my family were all doing better than everyone else. (Just being honest here. There is a slight competitive streak in me......) Again, no consultation with my family members on the competitive thing, just my own slightly unhinged goals.
It was this mindset which took the biggest blow when Jacinta was born - and deservedly so. Lucky, very lucky that I had decided before she was born that she was beautiful. I shudder to think how I might have tainted the first few days or weeks of my daughter's life with my own disappointment or dashed hopes, even ideas that this scenario was unacceptable - I did say slightly unhinged!
And looking back now I also feel a little ashamed that I let it get that far. It's certainly not how I was brought up. In our family, love was at the centre of everything pretty much. Sometimes it was tough love, but it was never absent. We never saw an ounce of hate pass between our parents or from our parents to us. Never a moment of resentment. Never a sarcastic joke at our expense. If ever one of us even joked that our parents didn't care about us, our Dad in particular would get very serious about making it very clear that they loved each and every one of us.
My parents extended the hand of friendship to others in need of friends. This sometimes made for interesting Christmas lunches. Our family friends included a family of Vientamese boat people who asked directions of my father one day in the '70s when he had driven the train they had caught, which resulted in him taking them out to buy a heater on the weekend. Incidentally, the eldest daughter of this family was working as a doctor across the hall at the Women's when Jacinta was there. Small world!
The story of how my parents met is very telling on this subject. My mother and father were both in a bushwalking club. They did the usual, checking each other out on the bus ride to the walk, getting to know each other as they walked along. The second time they saw each other, my father stopped short and asked my mother "what happened to your leg?". She was over the moon!
When she was a baby she had had a birthmark on her leg which worried the "stupid woman doctor" as my grandfather would call her. When she was still small, they x-rayed it and somehow (my mother said it was too close to the bone) her leg stopped growing for about a year or so. This meant that there was a noticeable difference in length between her legs. She wore a prosthetic boot from about 2 years of age.
My father had been so enraptured by her company the first time that he hadn't noticed what I suppose many would perceive as a disability. My Mum went to great lengths from a young age to challenge anyone's idea that she was disabled. If anyone even gave the slightest hint that they thought she couldn't do something because of her leg, she'd be doing it to prove she could.
When we were growing up, I used to get sick of people at school asking about her leg and what happened - mostly because at home it never came up and it was annoying telling the same story over and over again. (Poor me!) We used to cheekily put on her boot while she was getting dressed and walk up and down the hall with it for fun - until she'd remind us that she was kind of stranded without it and needed it back please!
So I suppose physical abnormality was a part of life from the day we were all born. Yet somehow I became intolerant of it. Why? Hmmm....not sure. I guess it's foolishness to think that all abnormality is the same. It's not. A guy with tongs for hands is not the same as a guy with a face that is bright red and knobbly. They're individuals. I recall staring at a guy I saw once who had a boot just like my Mum's. It was the first and only time I've ever seen anyone other than my Mum with a built-up shoe. I was stunned to see that on someone other than Mum and a moment after, I wanted to run after him and explain why I was staring. It all seemed entirely unnecessary though, so I went on my way.
So over recent months, I have come to know many people with children who have a physical abnormality. I use the term 'abnormality' very loosely, since 'normal' is such a broad spectrum it seems wrong to put some within it and some out, but for now we have an agreement of what a normal body looks like and does, so anything outside of that is an abnormality for now.
The gradual process of exposure to sick children in hospital and the outpatient clinic attached to it has certainly changed my viewpoint. The Cardiology area of the Children's is a very sociable area. It's part of the culture that you can talk in the Parents' Lounge to anyone there and have a frank conversation about how long you've been there, why you're there and how it's all going.
Half the parents on that floor are in Intensive Care - Cardiology or General, Rosella Ward. The Children's has the best Cardiology department in the country so the cases are often very specialised and a lot of people are from out of town. The Intensive Care nurse who looked after Jacinta on her first day there said that in that ward they get the most unbelievable things. They get the things nobody would ever conceive of happening. Apparently her children have been on the receiving end of lectures that start with, "if you EVER think about climbing on top of a train while it's moving.......".
In the Rosella ward at the Children's, everyone's got a story. "My baby was born with Down syndrome, diagnosed at birth and had a septum which looked like swiss cheese plus the surgery was complicated so she had to go on bypass for a second time while they ligated the surprise extra blood vessel" is a pretty boring story. Five days in Intensive care - nothing. A week staying in hospital with your child - a holiday. At least you get a bed - and meals? Luxury! Your family is staying at home, which is a 30 minute drive from the hospital - lucky!! You haven't seen your children for two days? The lady at the table with you hasn't seen hers for a month. If you haven't been on ECMO, you're small fry. Really.
This is nothing....
ECMO is a heart/lung bypass machine which can be run outside of the operating theatre. There are specially trained Intensive Care nurses who can use this machine. If your child is on this machine, it's serious. The Children's has the largest ECMO team in the country. If you live anywhere but Melbourne or Brisbane, they have to come and get you and bring you here. They send a whole team over, with the machine to hook up the patient and bring them back. If it's a smaller hospital, they have to bring surgeons and cardiac nurses, anaesthetists, the whole lot to get it hooked up. Sometimes they have to make a judgement call based on the likelihood of the child's survival before they go, since the excess baggage fees are around $3,000. It's a grim business.
In the parents' lounge, the conversation could go something like, "were you on ECMO?",
"Yeah, just after surgery."
"We've been on it three times".
At the beginning you're talking about your surgery, then you talk to people who've had 6 operations since they came in a week ago. People whose babies have been an inch from death and they're talking about having 60% of their stomach removed, but they're alive and that's what counts. People who have what you've got and more. People who've got really rare chromosome disorders. The sort that are born once a year, not once a week. There are several children in the cardiac unit who have Trisomy 21. It was really nice to meet a couple of other Mums whose children were in a similar boat!
The day we were discharged, there were about 5 emergency calls in the rooms across the hall from us. We were already used to hearing the special alarm, the split second of silence before the clop clop of about twenty feet all heading to the room in question. On the second one we were in the middle of having an echocardiogram and the person doing it hung up her sonar thingy, excused herself and headed across to help. We hung out all gelled up while we wished every good thought for the guys across the hall who clearly needed our guy a lot more than we did right then.
Towards the end of our stay, I was talking to some people who'd come in around the same time as us and were going to be there a bit or a lot longer. None of us could believe how accepting we'd become of these surreal realities we'd all been faced with. Again and again the conversation about how our perspective on life had changed and how people in everyday life would think it was such a big deal, but in there it's just what's going on today. One lady told me she'd been at the hospital for over a year dealing with bone marrow issues. Her daughter was back in ICU for about the 6th time and had just had yet another surgical procedure. She lives several hours away and has a roster with a couple of other family members so that she can be home with her other children too. She says that if her daughter gets rushed to ICU and it's a school night, she'll wait til morning before coming in. It's so routine that she can't justify dropping everything.
What I think I like best about the vibe in there is that there's no 'you poor thing' much going on. It's all 'that sucks!', or 'me too', or 'that's fantastic!'. One day early on, a family I'd got to know had some awful news and things weren't looking good. We'd just moved to the ward and had some tubes out and things were looking up for us. When the father of this child told us what was happening and then asked how we were doing, I sort of looked at the floor and shuffled my feet. He said, "tell me! I want to hear good news!"And he was genuinely pleased that Jacinta was doing well. It seems hope is catching.
One thing which made me really smile was when I was talking to my eldest about a little boy whose parents I got to know quite well in the hospital. He's a tiny little bub and he has a chromosome disorder as well, called Smith-Lemli-Opitz Syndrome. (No, I can't pronounce it.) He has a whole selection of unusual things going on, one of which is an extra digit on each hand and foot. I was putting one of those wondersuits on Jacinta and excavating fingers from inside the sleeve to get it on right. I grumbled a little in wonderment about how tricky it is to get all five fingers through at the same time. "Imagine the trouble I'm going to have", said his Mum.
In the lounge another day, I was mentioning this baby to another lady I knew there who had a friend visiting. When I mentioned the extra fingers and toes, her friend's first comment was, "can they operate to fix that?", which stunned me slightly and I said, "or just leave it as it is". "Probably the least of their worries" added the woman whose friend it was, and who naturally understood that you're not in ICU for having six fingers. In defence of the friend, I could absolutely relate to that brand of thinking. I probably would have said the same thing last Christmas.
Once I got home I was talking to my eldest daughter about some people from the hospital and I mentioned the interesting thing about how this little boy has six fingers on each hand and six toes on each foot. "That's not fair!" she exclaimed, "I've only got five!".
In the hospital, everyone is flawed. Some are fatally flawed, which is a horrible thing and luckily in the cardiac section you're spared that mostly, since most kids are just out of a routine operation and will get better and go home.
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| Like this.... |
Everyone has a story and everyone has scars, literally. Some have no hair. Some talk to you but are fixed looking at the ceiling while they speak perfectly normally. Half the kids are wheeling round their IV line. The other half are still stuck in bed.
What happened in hospital is I lost the discomfort that goes along with disability. Disability became normality.
http://www.facebook.com/disabledlifemedia
There is a facebook page called "Disabled Life Media" which I enjoy. There was a post up there on 7th March of a tweaked goofy grim smile and the caption along the lines of "the face people make when they see a disabled person in the street". I have to say, I cringed. I have pulled that very face at a wheelchair-bound person more than once. I was lost for a bit when I saw that. I obviously could never pull that face again, but what should I do?
I guess I will now just walk on by, say 'excuse me' if I need to get past or make a friendly remark if appropriate. I think though, disability in my world is no longer something which stands out in the way it did before. I may go backwards of course, but for now it's just part of the spectrum and the diversity of the landscape of Melbourne, wherever we are.
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| And a gratuitous cute shot! |
Thursday, 18 April 2013
Lucky
Waiting, waiting, waiting.....
We had been at a pre-admission clinic several weeks earlier, getting weighed and measured, poked and prodded. Well, Jacinta was, not me. It was here that I first really noticed Jacinta's mettle.
While the other baby across the hall screamed blue murder when he was having bloods taken, Jacinta told me she didn't like it, but barely made a fuss. Bit of a 'hey, that's not nice to do that to me!'.
At this appointment they told us what to expect in terms of the waiting list scenario. We'd get told a date. They'd ring us the evening before that date to let us know if we were still expected for that date. If so, we were to get Jacinta washed (to avoid infection) and fasted the morning of the operation and make our way in to be there at 7am (!). We would then find out where we were on the list, if we were still on it, and wait as long as it took to be taken in - if we didn't get bumped off the list by an emergency and get sent home to do it all again tomorrow. (They run cardiac surgery 5 days a week at the Children's.) The nurse said that if we got in for surgery on the very first date we were given, we should buy a Tattslotto ticket. It never happens.
There seem to be two schools of thought on luck. One is that it is completely random, that who you are has nothing to do with it. Some people are just lucky and some are just unlucky. I don't buy that. There really seems to be more to it. The mere fact that some people get all the luck, as the unlucky somtimes say, indicates that there is something that attracts luck. What is it? Don't we all want to know the answer to that. I suspect it has something to do with your viewpoint. Feel free to let me know!
So on Tuesday afternoon I watched the phone intently, then accidentally left it on the kitchen bench when I went out for 30 minutes and missed their 5 calls! They rang Kane and spoke to him and got consent etc to do what they had to and he told me she was going in on Wednesday as planned. I was relieved, which it turned out was only a tiny bit of how I felt. Suddenly I was scared shitless. An intense burning sensation of irrational terror had suddenly appeared in my own universe. Crap.
So, I went an made a protein drink and took my vitamins and felt much better, like I wasn't going to faint at any moment. I still felt bad though. Bad for Jacinta and bad that I'd made a crap body for her and she was going to have to go through pain and unconsiousness to get it fixed up. Bad that I could only guess at how she'd be feeling and tell her it'd be fine in the end and she'd be feeling better at the end and we could get that bloody nasogastric tube out. Bad that she'd have a scar down her chest for the rest of her life. Bad that I wouldn't be able to hold her hand or cuddle her the whole time to help her through it.
And I went on feeling bad for the rest of the night and accordingly got very little sleep. Having to be up at 3am for her last feed then 5am to get her ready to go didn't help!
Still, I thought about it all the morning of the operation and came to a conclusion. I had to knock off feeling bad. I had absolutely no business going to pieces because that would make me uselses for Jacinta, possibly make her scared going into the operation and be another thing to feel bad about. So I thought about everything straight on. I looked each big bad thing square in the eyes and confronted it. I deliberately thought about how Jacinta would look with a massive scar on her chest and tubes coming out every which way. I decided to be responsible for anything I may have done during my pregnancy which wasn't ideal since no-one knows how a heart defect happens and you therefore blame every error you have committed for causing it. And it all felt much better.
I stayed with Jacinta in the pre-op area until the very lovely anaesthetist came out and wheeled her in. There is a whole medical genre of cute baby things that you just don't get to see until you have an unwell child. Baby blood pressure cuffs are adorable and if they weren't so macabre, baby hospital gowns would be one of the sweetest things ever. I wanted to get a photo, but it really seemed a bit too inappropriate.
She wasn't very happy about being undressed to be weighed and I'm pretty sure she knew exactly what we were there for. She calmed down in my arms while we were waiting and then when I put her down, wrapped up, and gave her a kiss goodbye and wished her luck, she pulled out the bottom lip for a bit just like my others would have done. To her credit, she pulled it back in when I reassured her she'd be fine out the other side and off I went.
Then I went downstairs and sat in the toilets for quite a while not knowing what to do next. I knew I had a wait until at least lunchtime until they were finished the operation and then it would be another few hours until she was all done with anaesthesia etc and out into the ICU (intensive care).
Kane told me to go to the movies, so I went. I wound up walking a fair way, which is a good thing considering the chocolate habit I've developed since Easter and still need to get on top of.....
I caught the tram into the city and had a look to see what was on at the cinemas. Nothing much. I also needed to charge my phone. The one thing they ask of you is to keep your phone on and keep it charged and of course I'd had my phone up on my shelf all night - the only place I could be certain of hearing it in the middle of the night and not just talking myself into snoozing the alarm in my semi-concious rational brilliance. I'm very convincing when I'm mostly asleep. Hence my phone had about 20% left. Not enough to last all day - especially with facebook running. (And when is it not?)
I figured there'd be one of those things they have at the airport, where you can plug your phone in and charge it and pay a couple of dollars. Somewhere in the city, you'd think. I googled. Nup. If it's there, no-one's wanting us to know about it. I walked around a few places, no luck. Finally I called into a phone repair place who told me they had an under-the-counter phone charging arrangement. $5 and they put your phone on the charger under the counter. Nice. I left my phone there and went walking to find another cinema. Still nothing much on, and now I had a phone needing collection and I wasn't willing to leave it for the length of a movie in case they rang.
So I called into a text book shop and bought a copy of Gray's Anatomy, found a drinkable cup of tea and sat reading the heart section, which made me feel much better about the operation. Made it less mysterious. Then walked some more and got some Nando's chips. I collected my phone and decided to head back in the direction of the hospital. I caught an Upfield train which takes you closest to the hospital. Once on it, I decided I wasn't in any hurry and caught it all the way to Upfield (in the way of my ancestors) to see what was there. I saw a couple of armchairs sitting by the railway line. I caught it back to Flemington and got back to the hospital.
Then I sat down to start writing the previous blog, after finding that the Parents' Resource and Respite centre will charge your phone for you....
Writing away at the computer I watched the time. It was now after lunch and it was the kind of time I would be expecting to hear from the surgeon. My phone rang and it was the Cardiologist. He'd been called into the operation midway because things had started going awry and they needed to find why. He did an ultrasound (they do it down the trachea during surgery) which showed a sneaky blood vessel pumping blood from the aorta to the lungs. It was hiding the whole time under the heart and none of the ultrasounds or chest x-rays or echocardiograms had managed to detect it. They had to lift the heart up and out a little bit to find it!
Anyway, he said she was fine, but that they'd found this and they had to go back in to fix it so it would be another couple of hours. More time to kill........
I went back to the surgery reception to settle in and wait. And wait. And wait. About 5.30 I got a call from the surgeon who told me that the surgery was complicated and difficult and he'd done the best he could to repair the leaky valve but that it was still leaking a bit but he was worried about having her on heart bypass any longer so left it at that.
He said she'd be another hour or so before she'd be ready to go to ICU. So that was that. Then the waiting began. About 90 minutes later I saw the anaesthetist walking by the waiting area. I thought it couldn't be much longer. 45 minutes after that I figured it could. About 7.15 I wondered if I was waiting in the right area since I had been told I could wait here or in the Rosella ward waiting area. I wandered over there and asked. They led me back to where I had been waiting.
Someone came out from theatre to let me know that she wasn't out yet.
Over the last 5 hours I'd seen people coming in then being called by their child's name and taken to see them. The room had gradually emptied and I'd been able to turn the godawful programs off and stick Ellen on instead, then repeats of Friends, then Mr & Mrs Murder - which I think has promise. I do like Sean Micallef...
And still I was antsy like a small child waiting. I got up and tidied the parents' lounge. Then I went into the main Surgery reception and tidied it up. Picked up the toys, straightened the chairs, put the scraps of paper and dirty tissues in the bin, tidied the books and found the stickytape to fix the book which had been ripped apart. I spent 5 years closing up reception at a busy GP clinic. Old habits die hard. (If there'd been an EFTPOS machine to balance, and histories to get out for tomorrow I'd have done that too!)
As time went on, I had to start thinking about why it might be taking so long. What could have happened? As it went on longer the chance that something had taken a turn for the worse got higher.
I thought I'd best be prepared for bad news. Even super bad news. This wasn't fingernail surgery we were dealing with and we weren't living in la la land. (Although I'd like to go there for a visit, it sounds great.)
At 8.30 when Kane was threatening to come in an hour and take me home I figured I should chase her up, so I rang the after after hours number on the wall. They said, "that's weird, I'll come and get you".
This nurse took me round to the right ward and told me that she'd been there since 7.30 and had been ready for me for a little while (they don't let you in as soon as they arrive because there's a lot of setup to do) and they were just about to ring me since I hadn't been bashing the door down demanding to see my child. Not really my style.
I went in and there was my little girl, looking pretty good actually. She did look a little bit like she'd been in a fight. Gummy eyes with dark circles and a fair few bloody bits, tubes everywhere. But she looked ok. (You should have seen the other guy...) The nurse looking after her said that he was surprised. On paper she looked like she should be needing loads of support. He had been poised to spring into action and do some amazing life-saving stuff. Instead she'd mosyed on in, parked herself there and got busy healing herself. He said she was rock solid, not wavering at all.
The doctor came round, had a look, checked that everything was going well, said 'amazing', 'don't change anything', 'keep it up' (to Jacinta) and left.
And she's kept it up for nearly 48 hours. The night doctor came again last night and said , 'amazing' again. She got the day off for being so good. No drastic changes.
When Jacinta was born, she was sitting there in ICU just getting better. Never in any grave danger, in the middle of tiny 24 week-old babies who would mew in their cots, clinging to life, with their parents constantly hovering on the edge of losing them. I think back to the day when I was in the Family Lounge eating my lunch and there was a young man being shown in. From the tone of the conversation I heard heading my way, I could tell that he'd just lost a baby daughter and the other one was looking shaky. Their mother was still 100s of kms away in the town where she'd delivered them, about to follow them down. She hadn't had a chance to hold her daughter at all.
Listening to this going on as I ate my lunch and wished I could disintegrate into nothingness right there at the table, I just felt so lucky. Here I'd had my life turned upside down, or so I thought, and there this young man, no more than 25 at the most, was dealing with the death of his child and possibly the death of another. The whole situation broke my heart and I felt like an impostor. How dare I have a child in intensive care who was just getting better, in no danger? I never found out what happened to the other baby. She'd be full term now and going home. I hope she did.
Yesterday I saw a person walk past me in the hallway. I knew her face. It was a girl from my class at school - which we left 20 years ago....!
She has a son in Intensive care as well. Again, my 14 week-old daughter with her long, complicated heart bypass operation pales in comparison to her 6 week-old son who has had 6 operations in the last week and was on the ECMO (is that how you spell it?) machine, which is so specialised that just about anywhere else in Australia, they fly the team out to put the child on the machine and bring them back to the Children's when the specially trained nurses can take care of them. He got as close to death as you can get without dying. Luckily, he's doing fine now.
There was a bunch of parents sitting around the parents' lounge last night thanking their lucky stars that they live in Melbourne and we have the best Cardiac care in the country right here. One of them would have had to go to Boston, USA if we didn't have the surgeons we have here. Lucky we live where we do. Her surgery didn't exist 5 years ago. Lucky we live when we do.
And my daughter keeps on keeping on, kicking all sorts of goals, which we can attribute to the supplements, to the NAET, to the assists, to the amazingly competent surgeons, to her own mettle, to the nurses, to the vibe in the room.
Once again, we're the lucky ones.
P.S. Once I get out of hospital, I can upload some photos!!
We had been at a pre-admission clinic several weeks earlier, getting weighed and measured, poked and prodded. Well, Jacinta was, not me. It was here that I first really noticed Jacinta's mettle.
While the other baby across the hall screamed blue murder when he was having bloods taken, Jacinta told me she didn't like it, but barely made a fuss. Bit of a 'hey, that's not nice to do that to me!'.
At this appointment they told us what to expect in terms of the waiting list scenario. We'd get told a date. They'd ring us the evening before that date to let us know if we were still expected for that date. If so, we were to get Jacinta washed (to avoid infection) and fasted the morning of the operation and make our way in to be there at 7am (!). We would then find out where we were on the list, if we were still on it, and wait as long as it took to be taken in - if we didn't get bumped off the list by an emergency and get sent home to do it all again tomorrow. (They run cardiac surgery 5 days a week at the Children's.) The nurse said that if we got in for surgery on the very first date we were given, we should buy a Tattslotto ticket. It never happens.
There seem to be two schools of thought on luck. One is that it is completely random, that who you are has nothing to do with it. Some people are just lucky and some are just unlucky. I don't buy that. There really seems to be more to it. The mere fact that some people get all the luck, as the unlucky somtimes say, indicates that there is something that attracts luck. What is it? Don't we all want to know the answer to that. I suspect it has something to do with your viewpoint. Feel free to let me know!
So on Tuesday afternoon I watched the phone intently, then accidentally left it on the kitchen bench when I went out for 30 minutes and missed their 5 calls! They rang Kane and spoke to him and got consent etc to do what they had to and he told me she was going in on Wednesday as planned. I was relieved, which it turned out was only a tiny bit of how I felt. Suddenly I was scared shitless. An intense burning sensation of irrational terror had suddenly appeared in my own universe. Crap.
So, I went an made a protein drink and took my vitamins and felt much better, like I wasn't going to faint at any moment. I still felt bad though. Bad for Jacinta and bad that I'd made a crap body for her and she was going to have to go through pain and unconsiousness to get it fixed up. Bad that I could only guess at how she'd be feeling and tell her it'd be fine in the end and she'd be feeling better at the end and we could get that bloody nasogastric tube out. Bad that she'd have a scar down her chest for the rest of her life. Bad that I wouldn't be able to hold her hand or cuddle her the whole time to help her through it.
And I went on feeling bad for the rest of the night and accordingly got very little sleep. Having to be up at 3am for her last feed then 5am to get her ready to go didn't help!
Still, I thought about it all the morning of the operation and came to a conclusion. I had to knock off feeling bad. I had absolutely no business going to pieces because that would make me uselses for Jacinta, possibly make her scared going into the operation and be another thing to feel bad about. So I thought about everything straight on. I looked each big bad thing square in the eyes and confronted it. I deliberately thought about how Jacinta would look with a massive scar on her chest and tubes coming out every which way. I decided to be responsible for anything I may have done during my pregnancy which wasn't ideal since no-one knows how a heart defect happens and you therefore blame every error you have committed for causing it. And it all felt much better.
I stayed with Jacinta in the pre-op area until the very lovely anaesthetist came out and wheeled her in. There is a whole medical genre of cute baby things that you just don't get to see until you have an unwell child. Baby blood pressure cuffs are adorable and if they weren't so macabre, baby hospital gowns would be one of the sweetest things ever. I wanted to get a photo, but it really seemed a bit too inappropriate.
She wasn't very happy about being undressed to be weighed and I'm pretty sure she knew exactly what we were there for. She calmed down in my arms while we were waiting and then when I put her down, wrapped up, and gave her a kiss goodbye and wished her luck, she pulled out the bottom lip for a bit just like my others would have done. To her credit, she pulled it back in when I reassured her she'd be fine out the other side and off I went.
Then I went downstairs and sat in the toilets for quite a while not knowing what to do next. I knew I had a wait until at least lunchtime until they were finished the operation and then it would be another few hours until she was all done with anaesthesia etc and out into the ICU (intensive care).
Kane told me to go to the movies, so I went. I wound up walking a fair way, which is a good thing considering the chocolate habit I've developed since Easter and still need to get on top of.....
I caught the tram into the city and had a look to see what was on at the cinemas. Nothing much. I also needed to charge my phone. The one thing they ask of you is to keep your phone on and keep it charged and of course I'd had my phone up on my shelf all night - the only place I could be certain of hearing it in the middle of the night and not just talking myself into snoozing the alarm in my semi-concious rational brilliance. I'm very convincing when I'm mostly asleep. Hence my phone had about 20% left. Not enough to last all day - especially with facebook running. (And when is it not?)
I figured there'd be one of those things they have at the airport, where you can plug your phone in and charge it and pay a couple of dollars. Somewhere in the city, you'd think. I googled. Nup. If it's there, no-one's wanting us to know about it. I walked around a few places, no luck. Finally I called into a phone repair place who told me they had an under-the-counter phone charging arrangement. $5 and they put your phone on the charger under the counter. Nice. I left my phone there and went walking to find another cinema. Still nothing much on, and now I had a phone needing collection and I wasn't willing to leave it for the length of a movie in case they rang.
So I called into a text book shop and bought a copy of Gray's Anatomy, found a drinkable cup of tea and sat reading the heart section, which made me feel much better about the operation. Made it less mysterious. Then walked some more and got some Nando's chips. I collected my phone and decided to head back in the direction of the hospital. I caught an Upfield train which takes you closest to the hospital. Once on it, I decided I wasn't in any hurry and caught it all the way to Upfield (in the way of my ancestors) to see what was there. I saw a couple of armchairs sitting by the railway line. I caught it back to Flemington and got back to the hospital.
Then I sat down to start writing the previous blog, after finding that the Parents' Resource and Respite centre will charge your phone for you....
Writing away at the computer I watched the time. It was now after lunch and it was the kind of time I would be expecting to hear from the surgeon. My phone rang and it was the Cardiologist. He'd been called into the operation midway because things had started going awry and they needed to find why. He did an ultrasound (they do it down the trachea during surgery) which showed a sneaky blood vessel pumping blood from the aorta to the lungs. It was hiding the whole time under the heart and none of the ultrasounds or chest x-rays or echocardiograms had managed to detect it. They had to lift the heart up and out a little bit to find it!
Anyway, he said she was fine, but that they'd found this and they had to go back in to fix it so it would be another couple of hours. More time to kill........
I went back to the surgery reception to settle in and wait. And wait. And wait. About 5.30 I got a call from the surgeon who told me that the surgery was complicated and difficult and he'd done the best he could to repair the leaky valve but that it was still leaking a bit but he was worried about having her on heart bypass any longer so left it at that.
He said she'd be another hour or so before she'd be ready to go to ICU. So that was that. Then the waiting began. About 90 minutes later I saw the anaesthetist walking by the waiting area. I thought it couldn't be much longer. 45 minutes after that I figured it could. About 7.15 I wondered if I was waiting in the right area since I had been told I could wait here or in the Rosella ward waiting area. I wandered over there and asked. They led me back to where I had been waiting.
Someone came out from theatre to let me know that she wasn't out yet.
Over the last 5 hours I'd seen people coming in then being called by their child's name and taken to see them. The room had gradually emptied and I'd been able to turn the godawful programs off and stick Ellen on instead, then repeats of Friends, then Mr & Mrs Murder - which I think has promise. I do like Sean Micallef...
And still I was antsy like a small child waiting. I got up and tidied the parents' lounge. Then I went into the main Surgery reception and tidied it up. Picked up the toys, straightened the chairs, put the scraps of paper and dirty tissues in the bin, tidied the books and found the stickytape to fix the book which had been ripped apart. I spent 5 years closing up reception at a busy GP clinic. Old habits die hard. (If there'd been an EFTPOS machine to balance, and histories to get out for tomorrow I'd have done that too!)
As time went on, I had to start thinking about why it might be taking so long. What could have happened? As it went on longer the chance that something had taken a turn for the worse got higher.
I thought I'd best be prepared for bad news. Even super bad news. This wasn't fingernail surgery we were dealing with and we weren't living in la la land. (Although I'd like to go there for a visit, it sounds great.)
At 8.30 when Kane was threatening to come in an hour and take me home I figured I should chase her up, so I rang the after after hours number on the wall. They said, "that's weird, I'll come and get you".
This nurse took me round to the right ward and told me that she'd been there since 7.30 and had been ready for me for a little while (they don't let you in as soon as they arrive because there's a lot of setup to do) and they were just about to ring me since I hadn't been bashing the door down demanding to see my child. Not really my style.
I went in and there was my little girl, looking pretty good actually. She did look a little bit like she'd been in a fight. Gummy eyes with dark circles and a fair few bloody bits, tubes everywhere. But she looked ok. (You should have seen the other guy...) The nurse looking after her said that he was surprised. On paper she looked like she should be needing loads of support. He had been poised to spring into action and do some amazing life-saving stuff. Instead she'd mosyed on in, parked herself there and got busy healing herself. He said she was rock solid, not wavering at all.
The doctor came round, had a look, checked that everything was going well, said 'amazing', 'don't change anything', 'keep it up' (to Jacinta) and left.
And she's kept it up for nearly 48 hours. The night doctor came again last night and said , 'amazing' again. She got the day off for being so good. No drastic changes.
When Jacinta was born, she was sitting there in ICU just getting better. Never in any grave danger, in the middle of tiny 24 week-old babies who would mew in their cots, clinging to life, with their parents constantly hovering on the edge of losing them. I think back to the day when I was in the Family Lounge eating my lunch and there was a young man being shown in. From the tone of the conversation I heard heading my way, I could tell that he'd just lost a baby daughter and the other one was looking shaky. Their mother was still 100s of kms away in the town where she'd delivered them, about to follow them down. She hadn't had a chance to hold her daughter at all.
Listening to this going on as I ate my lunch and wished I could disintegrate into nothingness right there at the table, I just felt so lucky. Here I'd had my life turned upside down, or so I thought, and there this young man, no more than 25 at the most, was dealing with the death of his child and possibly the death of another. The whole situation broke my heart and I felt like an impostor. How dare I have a child in intensive care who was just getting better, in no danger? I never found out what happened to the other baby. She'd be full term now and going home. I hope she did.
Yesterday I saw a person walk past me in the hallway. I knew her face. It was a girl from my class at school - which we left 20 years ago....!
She has a son in Intensive care as well. Again, my 14 week-old daughter with her long, complicated heart bypass operation pales in comparison to her 6 week-old son who has had 6 operations in the last week and was on the ECMO (is that how you spell it?) machine, which is so specialised that just about anywhere else in Australia, they fly the team out to put the child on the machine and bring them back to the Children's when the specially trained nurses can take care of them. He got as close to death as you can get without dying. Luckily, he's doing fine now.
There was a bunch of parents sitting around the parents' lounge last night thanking their lucky stars that they live in Melbourne and we have the best Cardiac care in the country right here. One of them would have had to go to Boston, USA if we didn't have the surgeons we have here. Lucky we live where we do. Her surgery didn't exist 5 years ago. Lucky we live when we do.
And my daughter keeps on keeping on, kicking all sorts of goals, which we can attribute to the supplements, to the NAET, to the assists, to the amazingly competent surgeons, to her own mettle, to the nurses, to the vibe in the room.
Once again, we're the lucky ones.
P.S. Once I get out of hospital, I can upload some photos!!
Under the knife...
So today's the day.
"What happened?", I hear you ask. "You were going to fix the heart...."
Yes, we were.
Perhaps that intention was a little bit more like growing a new foot than healing a paper cut. I'll fill you in.
When Jacinta's heart defect was first diagnosed, it was one of several things that needed fixing. It was a non-urgent thing. When we were in the hospital being briefed left right and centre, it was all I could do to keep track of the main headings and tick things off the list as they healed themselves and got fixed up. Getting into specifics like what the aorta does or how many holes there are in the heart and how big they are would have been pointless. The information would have gone in one ear, floated up through my brain and out the top of my skull and floated in a sea of information soup, indistinguishable from the tiny bits of carrot and celery data already bobbing around up there.
So one by one, things did heal themselves and get ticked off the list. We went from wires left, right and centre (literally), to one feeding tube in the nose (a naso [nose] gastric [stomach] tube). There are so many other names for that type of feeding that I'm not going to bother listing them all!
We were left with the heart and its associated problems. (Breathing and feeding)
We stuck it out for another 10 days in our original hospital and got feeding almost right...then brought her home since it looked like it was going to take a while to get that tube out when she could not be roused to feed at night time at all. (I could have had a wild party by her bedside with canons and fireworks and she'd have slept through. None of the usual tricks would raise more than a momentary eyelash.)
Straight from one hospital to the next, we drove from discharge straight to the Children's for her first cardiac appointment.
The specialist was happy enough with her. Happy to have her rocking along as is. Popped her on the list for surgery at about 3 months of age. Now, a word of warning. When arriving for your first appointment at the Children's outpatients (this is for Melbournians, though I'm sure it probably applies wherever you go - and people come from all sorts of countries to be seen here anyway) don't assume that for a 2:00 appointment you'll be out by 4pm.
We made arrangements for our daughter to catch the school bus home - a rare treat, which would have had her arriving at 5pm. Surely enough time to get from the city after a 2pm appointment. Surely!
No.
At 3.30 we went in for the echo, by 4.00 we still were nowhere near seeing the specialist yet. We started ringing round family members to see if someone could meet our daughter at the bus.
We finally got onto my uncle who was home. When I enquired as to whether or not he was busy, he answered 'I'm burying the dog'.
I figured that 'burying the dog' was a slang term for 'finishing off my Masters thesis' which had somehow passed me by. I sought clarification for this term only to find that he was, in fact, burying the dog! Poor old Roxy had barked her last bark and was to be interred that afternoon in the backyard. Of course I didn't want to intrude and interrupt such a solemn occasion, since the loss of such a beloved family member is a very sad thing which every person feels in a different way.
Yet, my uncle insisted that it was fine and that picking up my daughter would take precedence in his book, which was awfully kind. So it was that Leia was allowed to pay her respects to Roxy and we were allowed to sit in peak traffic for about 90 minutes, crawling to my uncle and aunty's house.
Thankfully this blowout only happened the first time, but it got to a point a month later where I'd been present for about 4 echocardiograms and I still didn't know much about the holes in the heart except that Jacinta's septum (the wall which runs down the centre of the heart, separating the pairs of chambers) closely resembled a slice of swiss cheese. It had several holes in it, one had repaired itself and the rest were not expected to because they were too big.
I got googling re heart defects and found one boy whose 3mm hole had healed over a few years, at about 1mm per year and the specialist had been very surprised. There wasn't a load out there re holes in the heart healing themselves, but we persisted. We had heard stories of the glyconutrients possibly having played a part in healing a person's heart issues. We kept going with the NAET on the heart and Maria got fancy and added things like stem cells and cardiac muscle to the treatment. We just kept at it.
Then, at an appointment I asked the radiologist to tell me the size of the holes. I can't remember which now, but one of them was 8mm, the other was 6mm, then there was a smaller one and a tiny unclosed duct. In a heart the size of a newborn baby's fist. It didn't take long for us to realise we were expecting to climb Mount Everest in an hour with no oxygen tanks.
So our goal became to keep Jacinta rocking along on her own for as long as possible and have her in the best possible shape for surgery. And instead of wanting the surgery to be delayed to give us a chance to let the heart heal, we now willed it to be as soon as possible. Around Easter time Jacinta got a cold which meant her breathing got heavy. The checkup at the specialist got her put on diuretics, which she'd be having after the surgery anyway. Her weight was a constant struggle to keep going in the right direction. She's hovered between 4.8 and 5kg since she got home from hospital. We tried everything we could think of, but it seemed that as soon as we got it right - amount of feed, frequency of feed - she'd start losing weight again.
The midwives and nurses who came out to weigh her suggested that she breastfeed for no longer than 30 mins, then 20, then 10 so that breastfeeding pretty much stopped except for a token go here and there to try to keep the nerves in her mouth used to the stimulation so that she wouldn't reject it later on as a weird feeling. I was expressing as often as I could, had to keep expressing overnight to keep my supply up when it started dropping off, NG tube feeding every 2 hours, or 3 hours or 4 hours or whatever the schedule was today and trying to look after my 2.5yo and add in a lengthy drive to collect my 5yo from school 5 days a week. Things were a bit insane.
We rocked along to the paediatrician at the hospital where she was born for her 6-week visit. She put her on a supplement to be added to her food. It was basically maltodextrin, which is powdered glucose. From memory I'm pretty sure this is what is added to just about every item you can get at McDonalds, which explains the addictive nature of the food. It makes your body's blood sugar spike without tasting sweet at all - sneaky...... "Watch out for diarrhoea", she said. I got her to define it.
Lucky I did.
After starting the maltodextrin, Poly-joule (which I have concentrate to stop from calling it Polyjuice), at dinner, she woke up the following morning looking a bit like a drug addict. Dark circles under the eyes and not really herself. She'd done a pretty big poo. Her mood picked up, but when we were at Maria's for her NAET that morning and she was grizzly (totally unlike her) Maria said she thought she had an upset stomach. Correct.
By the end of the day she'd become very sleepy, had done about 5 runny poos and I wondered about dehydration. I felt the top of her head to see if her fontanelle (the soft part on the skull that babies have) was sunken, since I remembered that from my previous babies' illnesses. Sunken? The Titanic was less sunken. She had a massive gaping dint in her head. Brief deliberation and then off we went to Emergency at the Children's. Apparently we did the right thing.
She was put on hydrolite overnight and puffed back up again, acting much more like herself. We stayed in hospital for another couple of days while the Drs sorted out a workable feeding regime which was likely to keep her weight going upwards. This incident got her bumped up the list and they rang us when we got home to say she was going in the following Wednesday. Finally!
And the day of the surgery was approaching at a million miles a hour, which in my mind wasn't fast enough...
"What happened?", I hear you ask. "You were going to fix the heart...."
Yes, we were.
Perhaps that intention was a little bit more like growing a new foot than healing a paper cut. I'll fill you in.
When Jacinta's heart defect was first diagnosed, it was one of several things that needed fixing. It was a non-urgent thing. When we were in the hospital being briefed left right and centre, it was all I could do to keep track of the main headings and tick things off the list as they healed themselves and got fixed up. Getting into specifics like what the aorta does or how many holes there are in the heart and how big they are would have been pointless. The information would have gone in one ear, floated up through my brain and out the top of my skull and floated in a sea of information soup, indistinguishable from the tiny bits of carrot and celery data already bobbing around up there.
So one by one, things did heal themselves and get ticked off the list. We went from wires left, right and centre (literally), to one feeding tube in the nose (a naso [nose] gastric [stomach] tube). There are so many other names for that type of feeding that I'm not going to bother listing them all!
We were left with the heart and its associated problems. (Breathing and feeding)
We stuck it out for another 10 days in our original hospital and got feeding almost right...then brought her home since it looked like it was going to take a while to get that tube out when she could not be roused to feed at night time at all. (I could have had a wild party by her bedside with canons and fireworks and she'd have slept through. None of the usual tricks would raise more than a momentary eyelash.)
Straight from one hospital to the next, we drove from discharge straight to the Children's for her first cardiac appointment.
The specialist was happy enough with her. Happy to have her rocking along as is. Popped her on the list for surgery at about 3 months of age. Now, a word of warning. When arriving for your first appointment at the Children's outpatients (this is for Melbournians, though I'm sure it probably applies wherever you go - and people come from all sorts of countries to be seen here anyway) don't assume that for a 2:00 appointment you'll be out by 4pm.
We made arrangements for our daughter to catch the school bus home - a rare treat, which would have had her arriving at 5pm. Surely enough time to get from the city after a 2pm appointment. Surely!
No.
At 3.30 we went in for the echo, by 4.00 we still were nowhere near seeing the specialist yet. We started ringing round family members to see if someone could meet our daughter at the bus.
We finally got onto my uncle who was home. When I enquired as to whether or not he was busy, he answered 'I'm burying the dog'.
I figured that 'burying the dog' was a slang term for 'finishing off my Masters thesis' which had somehow passed me by. I sought clarification for this term only to find that he was, in fact, burying the dog! Poor old Roxy had barked her last bark and was to be interred that afternoon in the backyard. Of course I didn't want to intrude and interrupt such a solemn occasion, since the loss of such a beloved family member is a very sad thing which every person feels in a different way.
Yet, my uncle insisted that it was fine and that picking up my daughter would take precedence in his book, which was awfully kind. So it was that Leia was allowed to pay her respects to Roxy and we were allowed to sit in peak traffic for about 90 minutes, crawling to my uncle and aunty's house.
Thankfully this blowout only happened the first time, but it got to a point a month later where I'd been present for about 4 echocardiograms and I still didn't know much about the holes in the heart except that Jacinta's septum (the wall which runs down the centre of the heart, separating the pairs of chambers) closely resembled a slice of swiss cheese. It had several holes in it, one had repaired itself and the rest were not expected to because they were too big.
I got googling re heart defects and found one boy whose 3mm hole had healed over a few years, at about 1mm per year and the specialist had been very surprised. There wasn't a load out there re holes in the heart healing themselves, but we persisted. We had heard stories of the glyconutrients possibly having played a part in healing a person's heart issues. We kept going with the NAET on the heart and Maria got fancy and added things like stem cells and cardiac muscle to the treatment. We just kept at it.
Then, at an appointment I asked the radiologist to tell me the size of the holes. I can't remember which now, but one of them was 8mm, the other was 6mm, then there was a smaller one and a tiny unclosed duct. In a heart the size of a newborn baby's fist. It didn't take long for us to realise we were expecting to climb Mount Everest in an hour with no oxygen tanks.
So our goal became to keep Jacinta rocking along on her own for as long as possible and have her in the best possible shape for surgery. And instead of wanting the surgery to be delayed to give us a chance to let the heart heal, we now willed it to be as soon as possible. Around Easter time Jacinta got a cold which meant her breathing got heavy. The checkup at the specialist got her put on diuretics, which she'd be having after the surgery anyway. Her weight was a constant struggle to keep going in the right direction. She's hovered between 4.8 and 5kg since she got home from hospital. We tried everything we could think of, but it seemed that as soon as we got it right - amount of feed, frequency of feed - she'd start losing weight again.
The midwives and nurses who came out to weigh her suggested that she breastfeed for no longer than 30 mins, then 20, then 10 so that breastfeeding pretty much stopped except for a token go here and there to try to keep the nerves in her mouth used to the stimulation so that she wouldn't reject it later on as a weird feeling. I was expressing as often as I could, had to keep expressing overnight to keep my supply up when it started dropping off, NG tube feeding every 2 hours, or 3 hours or 4 hours or whatever the schedule was today and trying to look after my 2.5yo and add in a lengthy drive to collect my 5yo from school 5 days a week. Things were a bit insane.
We rocked along to the paediatrician at the hospital where she was born for her 6-week visit. She put her on a supplement to be added to her food. It was basically maltodextrin, which is powdered glucose. From memory I'm pretty sure this is what is added to just about every item you can get at McDonalds, which explains the addictive nature of the food. It makes your body's blood sugar spike without tasting sweet at all - sneaky...... "Watch out for diarrhoea", she said. I got her to define it.
Lucky I did.
After starting the maltodextrin, Poly-joule (which I have concentrate to stop from calling it Polyjuice), at dinner, she woke up the following morning looking a bit like a drug addict. Dark circles under the eyes and not really herself. She'd done a pretty big poo. Her mood picked up, but when we were at Maria's for her NAET that morning and she was grizzly (totally unlike her) Maria said she thought she had an upset stomach. Correct.
By the end of the day she'd become very sleepy, had done about 5 runny poos and I wondered about dehydration. I felt the top of her head to see if her fontanelle (the soft part on the skull that babies have) was sunken, since I remembered that from my previous babies' illnesses. Sunken? The Titanic was less sunken. She had a massive gaping dint in her head. Brief deliberation and then off we went to Emergency at the Children's. Apparently we did the right thing.
She was put on hydrolite overnight and puffed back up again, acting much more like herself. We stayed in hospital for another couple of days while the Drs sorted out a workable feeding regime which was likely to keep her weight going upwards. This incident got her bumped up the list and they rang us when we got home to say she was going in the following Wednesday. Finally!
And the day of the surgery was approaching at a million miles a hour, which in my mind wasn't fast enough...
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