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.

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.

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.

And a gratuitous cute shot!

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!!

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...

Getting with the program.

So now I was home from hospital.

Everyday life had started. We had our weekly parking ticket and we were in it for the long haul.
It was time to work out what we were doing.

From the very beginning I knew that we would be addressing the Trisomy 21 from several angles. I knew we'd be on various supplements, doing NAET treatments and doing the program from the Institutes for the Achievement of Human Potential (IAHP). Also Scientology assists would be used as well, since we use them every day to help heal physical problems. Where someone else would take a tablet, I grab the homeopathics and do an assist.

In terms of the treatment side of things, we were very keenly aware that time is the enemy of the child who will have developmental delays.  We found out that glyconutrients could be started immediately. Now, one thing you learn pretty quickly with natural medicine and remedies and even quicker when looking for solutions to the problems associated with Trisomy 21 is that Google can be your worst enemy.

Any time you ever go looking for information on something to do with lesser kmown natural remedies there is always a very big and haughty presence proclaiming whatever you're considering to be dangerous and ineffective. If they can't pin danger on it, they just go with 'it couldn't possibly work'. (Once you find several of these articles, if there are plenty out there saying it's good, you can bet it's worth a try).

Glyconutrients are no exception.

We were also lent a few books. One was the story of a girl named Michelle Desrochers who took glyconutrients from about age 9 and had amazing improvements in her health and mental capacity. In addition, her physical features gradually changed so that she more closely resembled her family and the classic Down syndrome features were much less apparent.

Another was written by a man named Raymundo Veras, an eye surgeon from Brazil who found the IAHP program and set it up in his home town. As part of his work, he discovered that the Institutes' programs could benefit 'Mongoloid' children, as they were known then. It is called 'Children of Hope, Children of Dreams'.

The third was written by two of the IAHP staff and it goes over ways to increase the intelligence, mobility and perception of your baby. It employs the diagnostic chart used by the Institutes and a parent can evaluate their own child and adopt a program to promote faster development in one or more of these areas.  This book is entitled, "How Smart is Your Baby?".

Kane and I grabbed one each and started reading. If googling is the killer of hope, these books were the spark that reignited it. It was almost like living between two universes, the one with no hope - the conventional Down syndrome website path, and the one with hope - the one with books where solutions abound. Lucky books are in real life and websites are just pixels.

I have to make very clear also that any depressing stuff I found was only a fraction of what Kristen had to go through. I had solutions at my fingertips. I didn't have to wade through website after website of hopelessness to find the gems that even a few weeks in were already working magic. For this I will always be very grateful.

Anyway, back at the hospital they had done an initial echocardiogram (echo) and found an AVSD. That would be an atrio (to do with the atrium/atria) ventricular (to do with the ventricles) septal (to do with the septum, the wall between the left and right sides of the heart - or the oxygenated and de-oxygenated blood) defect. Carl, the paediatrician, wanted to wait until Friday when the Cardiologist from the Children's came over to have a look before they made any decisions. He wanted to confirm it.

Friday came along and the Cardiologist came. He did the echo again and at the end, they took Kane and me off to a side room and sat us down. It was a little like being in the principal's office when you don't know why you're there.

We were drawn a picture which I didn't really understand and told that there was the AVSD, which amounted to several holes in the wall down the middle. There was also the special valve that should close over at birth which hadn't, plus there was a problem with narrowing in the aorta. (I still don't know exactly what the aorta does except that in the drawing it went round the heart.)

The upshot of this was that Jacinta would be needing surgery. Possibly two bouts of surgery. Possibly within a couple of weeks. If the arteries got narrower, she'd be in trouble and need an urgent operation. The idea of our tiny 2-3 week-old baby being put under general anaesthetic and having drastic surgery was not a favourite, to say the least, and Kane and I are accustomed to being able to do something about any situation rather than being completely at the mercy of what comes our way.

So we went down to the cafeteria to digest what we'd been told. We looked at our arsenal of weapons. What could handle body parts? NAET. How do you get NAET done on a baby in hospital? Get a practitioner to come to the hospital. So we decided to see if Maria, who had worked with Gryffin, would be willing to come out to visit a baby she'd never met when she was still on Christmas holidays and her surgery was not open again yet. And....yes, she was! She agreed to come out within about 24 hours and start NAET with Jacinta.

Then we wondered if the hospital would mind. We figured we'd handle that if it came up. We let them know that the naturopath was coming and would be doing a procedure. We'd already been doing assists several times a day since she was born, so what's another unusual therapy thrown in? No biggie. They were mostly just pleased to see us being proactive about our baby's condition at this early stage.

So we began the regimen. Getting glyconutrients in and NAET done became the most important things we could do. This meant breastfeeding  as much as possible since I wasn't sure how well the glyconutrients would survive the refrigeration/freezing and rewarming process. Maria came out to the hospital for us every few days in the evenings.

Prior to the NAET starting, she was swimming in a fog. Kind of like when your baby is asleep with their eyes open. She rarely had her eyes open and when she did she wasn't alert at all. This was in stark contrast to my other daughters who were on the ball from birth. (Though not unusual for a baby with a heart condition or Trisomy 21.) When I arrived the morning after the first after-hours NAET treatment, she had arrived also. For the first time since she was born I could see her actually looking. The drowsiness had lifted. This was such a relief! I could finally get to know my daughter.

We kept the NAET going, with Maria coming in to the city whenever she could. Jacinta got stronger on the treatments, mainly on brain & body function, heart and lung things with a couple of other helpful ones thrown in. We checked the different supplements I was taking to be sure Jacinta could absorb them and how much she needed me to take. It's fascinating how much can be gleaned through kinesiology.  The next scan was done by the paediatric consultant. There was a 'huh', because she couldn't really see any problem with the aorta. There was narrowing, but nothing major.  It was checked again a week later. Still stable. Finally another week later, they ticked it off as not being a concern. Woohooo!  One bout of surgery dodged.

Bit by bit also her tubes and wires had come out. Her platelets had finally sorted themselves out - took a few weeks of up and down numbers and a few transfusions, but she got there. Luckily, or on purpose, she had fixed that up right after they took out the umbilical line that was going to her bloodstream. They had intended to replace it with an intravenous line, but after two failed attempts had given up out of kindness and hoped for the best. If they'd had to do another transfusion they would have had to put a line in again so she did well on that one!

Her breathing also improved bit by bit. What I didn't know at the start was that they can go backwards and forwards. We had started breastfeeding when she got her CPAP contraption off, then a few days later I came in to find it back on and breastfeeding was halted since it was apparently too hard with the tubes in (though if it was just up to me I would have tried anyway!). So it seems these babies in intensive care go a bit up and down and take a step backwards here and there. You get very used to the uncertainty and the sudden leaps forward.

So after several weeks of commuting to the city every day and sometimes at ridiculous o'clock in the morning to try and catch an awake period for a breastfeed, the cardiologist rang in to say that he'd seen the scans and the imminent surgery wasn't needed (yay!) so it would just be the second lot of surgery to fix the holes (hmmm) at 2-3 months (what? you said 6-12 months!). Upside - we could be transferred back to her birth hospital which is only10 minutes from our house. Downside - if we were going to avoid surgery altogether, we had about 6 weeks to get that heart fixed!

The race was on.....

Down syndrome vs Trisomy 21...let's take it outside!

(Warning: this post may be controversial. If you have a personal interest in Down syndrome and are emotional about the subject, this may upset you. Depends on your point of view. If it does, I apologise, but better to know now. I'll be sticking with this view all through my future posts unless something I observe changes my viewpoint, but I doubt that will happen. I am firmly of the opinion that a person has a body and is not defined by it. Therefore I firmly believe that a physical condition can be changed and not necessarily affect a person's innate personality. I do not believe that a person's personality etc is determined by genes.)

So if Down syndrome and Trisomy 21 had a fight, who would win.....

Seems like a ridiculous question, doesn't it? Yet I wonder.

Most people have never heard of Trisomy 21 and if they heard that a baby was born with this condition they'd most likely say 'oh', kind of blankly and wait to be filled in.

Most people have heard of Down syndrome and if they heard that a baby was born with this condition they'd possibly say 'OH', in a very unsure kind of way and get very uncomfortable all of a sudden, not knowing what to say.

Yet they're meant to be the same thing.

Thing is, people think they know what Down syndrome is. They don't wait for you to tell them. If what you say doesn't match up with what they think they know, they'll disbelieve you or think you're delusional - or both.

Since Jacinta was born I've met a new person every week, sometimes several, who are involved somehow with her care or even our care. Each time we go over her diagnosis, her prognosis, her progress, our family, our situation, our needs etc.  Each time, she is referred to as having Trisomy 21 and rarely does the term Down syndrome come into it.

In fact, you can almost tell the attitude of the medical person you're talking to by whether or not they use the term Down syndrome. This is not a blanket description, mind you, but there does tend to be two kinds of medicos. There are those who look at the baby in front of them as a baby with a heart condition, two fontanelles, breathing difficulty related to the heart defect, slow weight gain etc. and Trisomy 21 or there are those who look at the baby in front of them as a baby with Down syndrome and associated health conditions.

Now this wouldn't be a problem except for one thing. Down syndrome has a different definition for every person with the condition. There are many typical characteristics in people with Down syndrome.  Not every person has the same combination of things. As the paediatrician at the Women's said when explaining about the extra fontanelle, this (like all the other characteristics) is something that anyone can have, not just babies with Down syndrome. It's just more common in babies with Down syndrome. People with normal genetic makeup have serious heart conditions, leukaemia, eyes with extra folds and an upwards slant, slack muscle tone, low intelligence, small and broad hands, a big space between the first two toes, extra skin at the back of the neck, low birthweight, small size....the list goes on.

So if every characteristic of Down syndrome can be found in people without Trisomy 21, what is the one thing that defines people as having it? It's purely the genetic characteristic of having the triplet of chromosomes at number 21, rather than a pair.  Hence the name tri-somy 21. (It is said in a couple of places that the one thing all Down syndrome children (just stating here for the record, being precious about how we phrase the name is, in my book, ridiculous) have in common is some degree of mental retardation. Thing with that is, I'm seeing children without any degree of mental retardation so that doesn't bear out in fact either. )

Thus, it seems to me that the best way to start afresh and drop the preconceived misconceptions about the condition my daughter was born with is to drop the tag as well.

Thursday was International Down Syndrome Awareness Day. I'm so out of the loop that I didn't know until I saw it going on around me. I guess I'm not hooked into the scene yet! A few weeks ago I read a blog post from a lady whom I follow and I was delighted to read that she didn't want to post about her son  and celebrating his achievements to raise Down syndrome awareness purely because she didn't want him to be accepted as a child with Down syndrome, but on the same terms as everyone else. Just as himself.

I am of the same ilk. Most times when I look at Jacinta, I forget that she has a chromosomal abnormality. It barely shows in her face - which is a far cry from when she was born. (see above) It doesn't show at all in terms of her size, nor her awareness (which blows the intelligence thing out of the water thus far in her case too) or in her ability to communicate.  When she is assessed by medical staff, they are gobsmacked at how she is doing. I forget that she's going to need intervention. She barely shows any need so far whatsoever. (She is slightly behind in terms of muscle strength, but she's working hard on it!)

To me, and I mean no disrespect at all to anyone else out there who has Down syndrome, associating Jacinta with Down syndrome is applying a label which doesn't fit. Thing is though, she does have Trisomy 21 and I'm pretty sure nothing can change that (though they're working with stem cells I believe....).

If we're doing several therapies which can sort out the facial abnormalities, poor muscle tone, co-ordination, awareness, speech etc and produce a child who is fully capable of living and producing whatever effect in life that they want to, then as far as I'm concerned, that is a cure for Down syndrome. Not Trisomy 21, but Down syndrome.

In honour of Down Syndrome Awareness Day, which has just passed, I would like to raise awareness. Awareness of what can be achieved when you have Trisomy 21. Awareness that giving birth to a child with Trisomy 21 can be a drama but need not be a trial and you can be every bit in love with them and even more proud of them than you could be if they had no trials of their own to contend with. Awareness that Down syndrome is a set of characteristics that may or may not be present in any individual. Awareness that the only factor of Down syndrome which cannot be changed is the Trisomy 21. Awareness that Trisomy 21 and Down syndrome are not, in fact, the same thing. Not in my experience anyway.

I have read about people who are out-performing people's expectations of what Down syndrome people can do or be and despite this are being passed over for jobs or discriminated against because of the assumptions people make. Never mind that they have a qualification, the same as everyone else in that situation. This is where the trouble lies, I reckon. This is what needs to change before Jacinta is old enough to have that happen.

Also, there is a very important reason to raise awareness. There are 1000s of babies born worldwide every year with Trisomy 21. How many of their parents realise that a lot of the Down syndrome characteristics can be overcome?

Imagine if they all did. The big, bad, scary unknown which prompts so many potential parents to abort their foetuses because they might have Down syndrome would be no more. I would hope that this would give many more babies the chance to show what they can do and thereby increase the public's awareness of the difference between the label and the actual condition.

This is a condition that attracts little research. I have heard that the viewpoint in research is that there's no point. I googled madly to find the expert on Down syndrome. I don't know who he or she is, but they're certainly hard to find. Traditionally there's a 'can't do anything, let's get rid of it' attitude to Trisomy 21. Originally manifested in shutting those with it away. More recently in killing them before they make it out alive. I suspect that those who know the most are the parents. The ones who have researched themselves til the cows come home and then til they go out again the next day. The ones who have managed to make a difference and raise children into vibrant, productive, self-aware adults, running their own businesses or working in jobs of their own choosing.

The whole purpose of this blog is to help new parents to find solutions by showing them our progress and to demystify the area of Trisomy 21.  Maybe even help adults with Down syndrome who have been told to settle for less to improve their own situation. Can it be done? We won't find out by not talking about it and not trying.

In the words of one of her first doctors, 'I know Jacinta, Jacinta's cool!'.

That's how I want the world to know her too. She is cool, and not in a 'special' way. She's beautiful and  tough and very cool. She'll give her sisters or her at times inept mother a piece of her mind when necessary. She is very on the ball.


I have the utmost respect for my daughter and what she can take in her stride.  We are all special. She is awesome.

Facebook blog page....

Hello to all my readers!

Many of you have found my facebook page, which is great!

For those of you who haven't yet and don't have the RSS feed thingy and/or would prefer, there is a page for Conquering Down Syndrome on facebook where I upload links to each new blog post.

So if you're on facebook and want to follow the posts, 'like' away and I'll tell you as soon as a new post goes up on here.

See you there!

Cheers,

Team Jacinta!

Oh, the tears...

...And that was the last night in hospital. Next morning, I was offered Panadol for the umpteenth time which I really, honestly didn't need and almost couldn't convince them I wasn't in any pain whatsoever.
They did manage to send me home with a couple of what they call "skirts".  Basically big pieces of elasticised fabric (called 'tubigrip') which keeps your abdominal muscles together and stops your guts falling out. Because it turned out that though I wasn't in pain, that sensation I had on getting up like my guts were falling out was that my guts really were falling out. I had a DRAM (which is an acronym for how far your abdominal muscles have separated from each other) which was 5 fingers wide - or, the width of your hand).  So apparently that didn't have to hurt, which was excellent!

And with that, I waved goodbye for now to Box Hill and off I went to the Women's for another day of being a mother with a baby in ICU. This was a transition period, where the older daughters were due to come home after staying with their grandparents and I was due to come home and start commuting in each day and being the Mum at home each night. The fantastic juggle of life was starting.

And part of this transition period, also timed with the transition of my breast milk, was the tears. Now I'm not a big crier. I would be able to count on one hand the number of people who have seen me cry except that I've done at least three cries in front of hundreds of people, so that would be a big fat lie!! But I'm not known for my public displays of emotion (or private ones, for that matter) and I can usually keep a lid on tears quite effectively.

Despite this, I reckon I cried more times in the first week of Jacinta's life than I have done since I made it out of primary school, and for not really any good reason. I blame the hormones! (And normally they do nothing to me, but I'm blaming them this time!!) I don't remember exactly when or why it started, but there were times like when Jacinta was clearly hungry and it had been only 2.5 hours since her last feed and she was being fed 3-hourly.

Obviously they have to have a schedule or it'd all go pear-shaped, but here I was with boobs full of milk and a hungry, crying baby and if I could only just get her out of that crib I would have whipped her straight out and fed her that instant. But I couldn't. So I had to hold her hand and apologise and tell her it would be coming soon and give her the dummy to suck on - which I would never, ever do at home.  Feeling that helpless in being able to give my child what she needed was unbearable. I looked away and attempted to keep a calm voice to answer my daughters' questions about why Jacinta was crying and their suggestions about what we could do.

The nurse looking after her that day asked me if I was OK and of course I said I was, since I really was, but it was just my body crying. She looked at me and said, "you're not, are you?". And I told her I really was, it was just silly. Because it was really, and it was just my emotions which Jacinta didn't need to worry about and they certainly weren't going to help!  She must have thought I was a bit mad. She did bring the feed forward though, which was nice!

Things started to get a bit real that day when Jacinta had her first visitors. As I met my other sister at the door to the ward (it's like a military compound there, total lockdown) it just hit me that Jacinta was having visitors and it was like this. I suppose that up until that point there was still a big separation between life pre-Jacinta and post-Jacinta and so it was easy to have two realities. Once they started merging, I suppose there began to be a little sadness to the scenario. She seemed tiny now, like a little baby in intensive care, robbed of her joyous and triumphant ride home and limited to two visitors at a time. And also, if my relatives were here, then she was really here too.

On top of that, there also was the reverse flow. The joy of the fact that even though she was there in intensive care, she got to have visitors too! I got to show off my baby! (Which of course makes no sense to have both sentiments at once, but the mind is a complex thing!)

So naturally, or for me quite unnaturally, on came the waterworks with protestations of, "don't mind me, I'm fine" etc. Then later, when Jacinta's grandparents came in with fiery determination in their eyes to help us do whatever we needed to, to give her the best possible chance in life, the tears came on again as Team Jacinta was formed in an instant in the hallway of the NICU. (Neonatal Intensive Care Unit) I'm sure the people in the hallway had many questions as to what was transpiring, but whatever! Just having a moment!

Then it came to having a bit of a cry whenever the moment arose and I could get away with it - by the bedside, looking the other way or in the car on the way to the hospital, staring out the window so the children in the back didn't see. I made good use of the times when I drove myself in. Got a lot of tears out of the way then since I could go for the whole trip, door to door, without interruptions. The social worker would drop past every day or two and thank goodness that when she dropped past and reminded me that it was ok to cry I was able to assure her that I had been getting decent tears out when the children weren't looking. She was happy about that and said, "that's the thing with crying, if you're doing it, the social worker comes running. If you're not doing it, the social worker comes running!" I liked her, she was cool.

About the middle of Jacinta's first week there, after days and days of expressing and tube feeding her, she had her CPAP off when we arrived. I didn't see any staff when I first got in, but thought that maybe there'd be a chance to have a cuddle. It transpired that Kane had been in the room before me and when I caught up with him in the Family Lounge, he told me that they said I could have a go at breastfeeding
for her next feed if I wanted - and I felt it coming. I told myself, "don't do it, hold it in"...but I had tear incontinence. It just came on out and there I was, howling into his shoulder with the sheer relief that I can't rationally explain but mothers out there will understand.

My apologies for the analogy, but not having breastfed my baby was for me a bit like not consummating the relationship. There is so much that goes on when you're feeding, on an intimate communicative level that when it's missing, it's a fundamental piece of your relationship missing. I have never exclusively bottle-fed, but I would assume that it's a similar thing. Tube feeding does not come anywhere near breast or bottle feeding. Having had two babies before I definitely knew what it represented to me and what I was missing out on. So yeah, I cried big fat tears of joy on that one!

And it was like meeting her for the first time...