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...

Settling in

...and then it was morning.

Kane brought our elder two girls in, dressed in brand new dresses, with presents in hand for their new sister.  A last little check and ok from the doctor and I was let loose with my hospital tags still on, on day release and due to report in that evening to stay again overnight. 

We drove in to the Women's and started the next phase of the new plan. 

The staff were amazing. They'd put a beautiful name tag up on Jacinta's crib, hand-drawn by one of the nurses. They eagerly accepted my EBM and were overjoyed when I told them I didn't want them supplementing with formula, but would be supplying all my own milk. I was gobsmacked (in a good way) when they asked me to number each expression so that they could give them in order (since breast milk changes each time to ensure your baby gets what he/she needs that day - especially in the first few days). 

When I think back to my mother's story of when I was born, I was jaundiced and taken to the special care nursery to be put under lights. My mother specifically asked to be woken overnight if I woke up needing a feed, so that she could feed me, but repeatedly found that they didn't and I had been fed formula instead which made her so angry. Then she had to insist on staying in hospital a couple more days after I got out of the nursery so she could have time to get to know me before she got home.

My experience was soooo different. There were several times when I wished she was still around so I could tell her what they were doing and how much they were getting it right! 

As soon as we walked up the hallway and got to the door, we ran into a doctor called Carl who had briefed Kane the night before. He briefed us again before we walked in and began the ritual hand washing, which would become second nature. We entered the room and were briefed by Romi, the nurse looking after Jacinta that day. In intensive care they have one baby per nurse most of the time and they really care about their baby. It's not just going through the motions, they get to know what they like and how they behave. 

For that first day, Jacinta didn't open her eyes at all while we were there. She was in her crib which was all enclosed, wires everywhere and you could barely see her face with everything she had on. We didn't know what we were allowed to do so assumed we couldn't do anything. When she needed a nappy change and the nurse asked if I'd like to do it I nearly fell off my chair and burst into tears! (There would be a lot more of the actual bursting into tears over the next week in particular - hormones!) Any time I was able to feel like her Mum and not just a visitor it was like a precious gift. 

Then the Care Manager came and showed us round and got me expressing equipment etc, then the Social Worker came over and asked how I was "feeling, no really...". What I found out over the next couple of days was that it's normal to experience a sense of loss, for the child you thought you had, and to let yourself grieve.....except I'm afraid I didn't fit the mould. Hardly unusual, I rarely do. 

I had nothing to grieve. My daughter was here and she was going to be fine. 

Maybe there was a small amount of loss for the relatively chilled-out time I was planning to have, (first-world problem!), but I never had one dream or aspiration for Jacinta that I have had to let go. Yes, I am quite particular about not having my own dreams for my children but letting them carve out their own life completely, but as well as that, if all goes according to plan, there's nothing to let go of. No reason why my daughter can't have the same opportunities that others her age have. Besides, we had too much to do.

No time for reflecting on what could have been - even though Who magazine chose that week to do a special on celebrity babies! (And I do confess to fleetingly thinking just once or twice on seeing happily families of five, "how come they get to have three normal ones?!", because however you look at it, Down syndrome is not in itself normal. If our Jacinta could have arrived in a body which had no slack muscle tone, major heart defect or developmental delays, I would certainly have chosen that body for her. As it is, that's what we're going for, but it's going to be work!!)

And we got settled in, in as much as you can. For the first few days we juggled the daughters, who quickly became known in the unit for their dresses. In the nurses' handover after every shift they went over who everyone in the family was and how Emilie would do a spin for the nurse in her daily dress (being just after Christmas the girls were doing well for dresses), how Leia was nearly five, how they were very beautiful etc then about Jacinta, how cute she was and how much they wanted to kidnap her and a little bit about her stats and treatment regime.

I exaggerate only slightly....

They really did go to great lengths to make us feel loved and valued, which made the whole thing so much more bearable. They never once got upset with us despite our curious daughters visiting other babies' families unannounced or playing in the curtains and smacking their heads on the cupboard because they couldn't see where they were going.

While they did all this we attempted to get our heads around everything.

There were the white blood cells, which were multiplying in a way they shouldn't - new ones mixed in that shouldn't be there. If they'd mentioned that this is called transient leukaemia I think we would have freaked out so I'm glad they didn't! Transient is the operative word. That one cleared up in the first 48 hours.

Then there were the platelets. These are the clotting bits of the blood. Jacinta's levels were low - about 20% of the lowest normal level. They had to transfuse her with donor platelets in the first couple of days. This was another thing that would sort itself out in time. How much time? That was up to Jacinta.

Next was the respiration (breathing). This was one of the reasons she had to come to the Women's. She was on a machine called a CPAP which is a machine that provides pressure to help puff out the lungs, like giving help on the first puff of blowing up a balloon - and wouldn't that be nice when you're running late setting up for your child's birthday party. Many a head spin could be avoided! As well as this she was on oxygen support. This was expected to sort itself out in time too. These transient things are all reasonably common in children with Down syndrome.

There was the heart too. Carl had confirmed there was a heart defect. We were waiting on the Cardiologist from the Children's Hospital to come and look again to make sure, but there was definitely a hole in the heart. The extra valve that normally closes over soon after birth was still flapping open also, but this was expected to close in the first few weeks.

So much information to be keeping track of, it was a bit overwhelming and frankly, half the times we were briefed I picked up on key words and whether those things were good or bad and said 'uh-huh' in a slightly blurry state. Very glad there wasn't an exam at the end!

So Jacinta had wires galore. A hat on her head holding the tubes (prongs) going into her nose for the CPAP, three electrodes on her chest measuring her heart rate and respiratory rate and one lot of blood saturation. Then there was a cool sensor on her foot or hand (depending where they put it) which shone a red light and could magically tell the percentage of oxygen in her blood. Then there was the intravenous line which they had put through her umbilical cord, called an umbiline. With all these things she couldn't come out for cuddles, so she stayed in her box with the hand windows.

We did the ritual cleansing of the hands upon entering and were very excited to hear that we could put antibacterial gel on our hands and actually touch her! The first day was spent getting my head around expressing and where to put it and where to sit and who to talk to and where the toilets are and which chairs move without warning when the children stand on them and which don't...and all of a sudden it was four o'clock and time to go back to hospital. I'd been SMSing one of my sisters and alluded to the fact that there was more to the story than they'd been told so far - which was no big news to my siblings since they'd been sitting around the table at a birthday gathering the previous evening, discussing the situation and the fact that there was no attributable cause for this intensive care business and as usual, I was keeping my cards close to my chest. (They know me well.....)

So we had arranged for her to come over to my hospital that evening and have a cuppa and a chat, which I was really looking forward to, but I had to spill the beans first. So I wrote a lengthy email telling the basic story - including the full account of the previous evening and very importantly the bit about Kristen and the solutions she had found and what we were planning to do. I was told later that they had all read the email within about 15 mins of my sending it, due to some very fast phone calls from one sibling to another. Their responses were as I would have expected. Awesome. Thanks for the info and very keen to meet Jacinta as soon as it suits. I love my family!

So my sister came over for a cuppa and brought Tim Tams - which despite the unfortunate use of palm oil (which has been brought to my attention since Jacinta was born) are the perfect accompaniment to a cup of tea, particularly in trying times. We went up to the cafeteria to get a cup of tea, which we probably could have done just as effectively, I realised later, had we gone to the little tea room just up the hall. Ah well. As is traditional we kept talking til well after visiting hours were over and sort of snuck out half an hour later with life and everything squared away. I don't think anyone would have got grumpy though. It was a little like someone had died, the way I was tiptoed around. I got out my old Red Dwarf book that I'd packed for my lengthy labour which didn't happen, read a bit and conked out...

I had a dream....

Well, sort of.

My first experience of birth had me in the delivery suite longer than on the ward and straight home to be looked after by my Mum.

It looked like this.....

My second experience had me on the ward about 10 hrs then home to find my main carer struck down with the flu on the second day and myself looking after both children with stitches and zero sleep or energy. Certainly not my plan. (Thank God for my sisters who took turns to drop in and do my dishes and feed me.)

It looked more like this....

Third time round I was not taking any chances. No amount of protests that it would all be ok this time could convince me to come home early. I had a plan. I was gong to milk this admission for all it was worth. I was going to make up feeding issues and fainting spells if I had to coz I was going to sleeeeep!!!

Of course I had no delusions that I'd be getting a full night's sleep with no interruptions, but the chance to sleep whenever my baby slept was going to be made full use of, and then some.

Worst case scenario I would stay two nights, get whatever sleep I could while someone else did all the housework and brought me food and I hung out with my baby, then we'd pop her in the car seat and all leave the hospital together as a family and drive home........

Worst case scenario....yes......

It's funny how you go through life with a kind of boundary for where you think tolerable discomfort ends and everything beyond that just happens to other people. It was oddly coincidental that with this pregnancy I actually skirted around the edges of the special care nursery a tiny bit. Firstly arriving in hospital at 26 weeks after scrubbing the floors at home and finding that the excruciating abdominal pain was just a strain, they turned off the heater in the little resuscitation crib because there was no baby arriving today. It was on leaving the hospital that day that I first noticed the special care nursery and thanked my lucky stars that we'd never seen the inside.

Another day, as I waited outside after an antenatal appointment, I met a lady whose baby had been born somewhere else and had been transferred to my hospital which was closer to home so she could commute. I pictured her coming in day after day, sitting by her baby's crib all day with breaks to go outside for a bit then leaving her baby and going home at the end of the day. It seemed so desolate and just not right, but she was coping with it.

Then three weeks later there I was standing on the other side of the door, looking at my own little baby in the resuscitation crib - which must have a cool and fancy name, but I don't know it.
All the usual things we were particular about with our elder two - having no speaking near them, not giving them injections and causing unnecessary pain - were secondary considerations to actually making sure she could breathe and the staff could do their job without difficulty. There's a time to be precious and a time to just do what has to be done. Talk about the birth plan going out the window!

We saw her there and received the diagnosis (which was unconfirmed, but only because of the technicality of the genetic test) then hung around for a bit. I still needed to have my stitches so we went back to the delivery suite and went ,"woah". We hadn't told anyone at this point that she was born, although most of our family knew she was arriving that day. We decided to tell everyone some of the story, but keep certain bits back. My main concern was that here we had this new baby and it was the start of her life. She had some tricky times ahead and one thing that would get her through was the vibe of those around her. I didn't think it would be fair if the announcement of her arrival had any watering down of the jubilation and love that usually comes with such a statement. Her two sisters had such a fantastic welcome, we felt she was entitled to the same.

So the conversations went something like...."We have a baby daughter, she's 9lb, .5oz, she's in the special care nursery, having a little bit of trouble breathing, she'll be fine though, just have to transfer her to the Women's because there are a couple of pieces of equipment they don't have here, but there's nothing to worry about". And we put off telling anyone who wasn't waiting expectantly for news.

Sitting around in the hospital was weird. Not having a baby in front of us was weird. I know that many mothers in years past would have done the very same in hospitals where all the babies were kept at the nursery, but to me it was strange, though oddly not the end of the world. Just what needed to happen.
(Most odd when the hospital photographer came by the next morning, looked around the room and said cheerily, "no baby?".  Lucky for her I did have a baby somewhere. It was awkward enough as it was!)

So we decided that Kane would go off to the Women's to help Jacinta settle in and I would stay behind to get my milk happening and visit in the morning, since there was no bed there for me at that time. We went back to the nursery to tell Jacinta she had a name and let her know what was going to happen. The transfer guys arrived and spent about an hour working out what she needed on the way and the best way to transport her etc. and they buckled her in to her bed. As we were saying goodbye one of the nurses said, "look, she's waving!". We looked and there was her little hand opening and shutting with her looking straight at us. So we waved back and off she went. All grown up and living on her own at 6 hours old!

One thing that I noticed from the very beginning and continually throughout Jacinta's care was that the nurses who look after babies really understand them. Kane and I have always talked to our babies expecting them to understand us and our babies have always responded as though they do. The medical staff also operate this way around babies and when they get an appropriate response to a question or statement they always acknowledge it. And here I thought the medical community thought babies had no idea what's going on. Uh-uh. Not the ones who deal with them. More about that in another post I feel....

Anyway, I made sure I started expressing as early as I could. Being from a long line of breastfeeders, there was no way my newborn was going on formula if I could help it. This meant that I was up every three hours expressing. So, irony of ironies, I have the opportunity most mums of newborns would (almost literally) kill for some days, no baby waking me up and no other children waking me up. Except, since I have no baby to wake me, I have to wake myself up to feed the baby who isn't there.

And of course, expressing has never been my strong point. How my mother managed to hand-express
a glassful of breast milk (or EBM, as all the people in the know call it) to put on my brother's cereal, I'll never know. Expressing colostrum in particular is high drama. Because it's the early stuff before your milk comes in, there's only a tiny amount and each little drop is packed with nutrients, like one of Roger Ramjet's proton pills.

So you massage and stimulate to get things going (sometimes the parallels between breastfeeding and sex are a little disturbing), then you grab your boob in just the right way and squeeze it in just the right place, fairly firmly so you get something, but not too hard or else your nipples will explode and you'll have bruised ducts (or so it seems). Then, when the planets have aligned and you've done it all right, you'll get a drop.

Next is the tricky part. You have to find the tiny syringe that you put next to you and put it right up near the drop which is hanging there on the tip of your nipple, poised to drop. You have to pull out the plunger with one hand while keeping it close enough to suck up the drop but not so close that you smoosh the drop all over the top of your nipple and have to hoover it up with your syringe like a mini hoover.

If you're very lucky you may have managed two or three drops at once and this just doubles the drama and the quick precision needed. You keep going like this for a few minutes each side, doing your best to pull the plunger out just enough so you don't have to try pushing it back in to get air out and maybe shooting your hard-earned gains into the air and onto your sleeve. At the end of all this you may have got .2 mil and you're ecstatic!

That night I was put up in my own single room (one of only three) and Kane had the option to stay if he wanted, though he chose to go home since it would be the middle of the night by the time he got there. I think we were in 'special care' too! Around 2am I ventured out of my room bearing a carefully labelled, dated and timed teensy weensy syringe with the precious .2 mil of liquid gold to be put in the fridge. I walked past the nurses' station and saw four baby cribs there like there was a midnight baby club going on. Apparently they had all been going off at once and they'd gone to the nurses' station to give the mums some rest.

I went up the hall and made a cup of tea, feeling like an impostor since I had no baby to show for anything and wasn't even limping or hobbling since they'd done such a great job of my stitches. On the way back, I almost stopped at the nurses' station and offered to look after a baby for a bit since I had nothing else going on. I sort of felt like I needed to earn my keep - but decided that would be a bit weird. I went back to my room and lay back on the bed feeling like I was on holiday at a crappy hotel.

I rang through to the Women's and had a quick chat to the nurse looking after Jacinta. She was doing fine, settled in. I could sleep. I was looking forward to the morning when I could start things rolling to get my plan back on track.

Meanwhile, my plan was looking something like this....