Thursday, 18 April 2013

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...

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