Thursday, 18 April 2013


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!


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...

Saturday, 6 April 2013

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.....