24 days

24 days is how old baby A was yesterday.

It was also how old S was when he came home from hospital.

24 days in a baby’s life is a long time. When I think of all the special bonding time that we’ve had at home with baby A, I haven’t been able to help but think about what I was doing during the first 24 days of life with baby S.

20 hours after S was born, I was sitting beside him, looking at him wired up to many machines, drips etc, wondering if he was even going to survive the night.

20 hours after A was born, I was sitting on my bed in the hospital cuddling him, as we waited (somewhat impatiently) for his dad and big brothers to arrive to take us home.

2 days after S was born we were sitting in a small room in the hospital, tissues in hand, listening to a doctor use lots of big, scary words as he described for us the many possible outcomes of S’s brain injury.

2 days after A was born, we were all happily shopping for a new leather couch for our new house, baby A asleep on me in the sling, while S and M bounced around on all the different suites.

4 days after S was born, my husband and I, devastated that I’d been released from hospital without our baby boy, camped out in our car in the hospital carpark so that we’d be nearer to him. We couldn’t bear the thought of being at home without him.

4 days after baby A was born, we were all at home, enjoying a blissful night of sleep together in our big cosleeping bedroom in our new house.

A week after S was born, the tubes to help him breathe were removed and we were able to hold him for the first time.

A week after A was born we were at a friend’s house, having a barbecue, watching S and M swim happily in their pool while baby A slept peacefully in my arms.

And then, yesterday, the same 24 days after we were dancing and cheering as we had been told we could finally take our little boy S home, we went to the beach with baby A. Baby A slept the whole time. The rest of us played and splashed and built sandcastles.

It’s only 24 days, but when so much was different in our experiences with our precious boys, it’s also a very good time to remember just how much is the same – love you my 3 gorgeous boys! (And apologies to our beautiful master M – we should have taken a 24 day car pic of you too xo!!):

Testing, testing…..

I’ve had a bit of a reality check about how easy it is having a baby.

It’s easy when everything goes well.

But as soon as there’s a question mark of any kind, geez it gets hard quickly!

I had a phone call last night from the hospital saying that they want to redo the newborn screening tests for the baby.

These tests test for genetic and metabolic disorders – the most scary of which is cystic fibrosis, but others that would also be not much fun to deal with.

They couldn’t tell me WHY they wanted to retest. Just that they needed to do it and wanted it done as soon as possible.

So I didn’t sleep well last night. Fear instantly crept into bed with us. I held him a little more tightly than I have other nights and I found myself listening to his breathing, checking his body for anything unusual. BUT no, he just seems perfect.

We were already heading into the hospital today to do his newborn hearing test so it worked out well for me to also get the screening test done today as well.

We did the hearing test first. AND his hearing is fine. I wasn’t quite as fine, because the tester used Avagard handrub on her hands before doing the testing.

For anyone who’s spent time in a NICU, you may identify with the horrible memories that can be churned up by THAT smell. For me, it just sums up everything that was awful about being in the NICU. She was standing right beside me, attaching the sensors to the baby’s head. It might sound silly, but I had to summon up all my energy to just not burst into tears.

BUT I didn’t. And his hearing is fine. Yay.

Next, I had to head over to the special care nursery for the repeat screening test. Another place I really would rather not be. It’s not the special care nursery where S was, but still.  There they were. All those tiny little babies, all those anxious parents not able to take their bundles of joy home yet. AND again. That smell. Ugh.

The baby didn’t wake when they pricked his heel. He’s such a cool dude.

The nurse tried to soothe my nerves, telling me it was ‘probably nothing’ and to just take confidence from how well he’s feeding and growing to just assume they needed to retest because it was a dud sample first time around.

And I know the odds are definitely in our favour that it IS nothing to worry about.

BUT I will still worry. Because we’ve fallen the wrong side of the odds in the past. I’m not brave enough to consider that everything will automatically be fine.

I’ll try not to worry too much though. Especially as they’ve said it might be TEN days til we get results.

I will just keep enjoying this beautiful boy who is still feeding and sleeping like a dream. He is having longer periods of being awake and he loves to just gaze into the eyes of whoever is holding him. And he’s learnt to love his baths too.

More photos to come (the cable to to the computer hasn’t been unpacked yet….it’s got to be here somewhere???)

AND he has a name. To keep in line with the blog, I’ll be keeping it to initials – he is an A baby. We tried very hard for a J name to stick with tradition, but it really did reach a point where there just wasn’t the perfect J name around……

And now I am off for another cuddle.

What’s in a name????

Our little boy is 10 days old today. He is divine. He sleeps and feeds, feeds and sleeps.
I’ve not had an ‘easy’ baby before and it is a revelation. Wow. I could do this again and again .
He looks so much like S did when he was a baby that I find myself often wondering what might have been if S hadn’t suffered such trauma at his birth….would he have been an ‘easy’ baby too??? I rarely play the ‘what if’ game, but I guess new mummy hormones and this gorgeous little bundle means I am allowed to have that odd fleeting thought about what may have been my first experience as a parent IF things had been different….

AND this gorgeous, divine, sleeping little boy does not yet have a name.

He’s had 2 already, but neither have stuck.

And now as I hunt around for a third – the ‘perfect’ name – my husband has started to just roll his eyes and wonder if I’ll ever find a name that I think is ‘right’.

Maybe he’s right. But I LOVE my other boys names. They are perfect. AND I want this little guy to have the perfect name too. A name that belongs to him, suits him and becomes him.

I have one in mind. It’s lovely. I just have to convince my husband that this time I’ll be happy with it and that it will be a ‘keeper’.

As for the little boy. I don’t think he minds. He’s too busy sleeping and gurgling and getting lots of cuddles.

M calls him (constantly and with much love and affection) ‘baby brother’. He is not at all jealous as I’d feared and seems much happier about the ‘baby brother’ than he ever did about the ‘baby in the tummy’. He laughs whenever his little brother gets the hiccups and is LEARNING to be gentle as he pats his head or touches his face (and learning not to poke his fingers into his eyes or his mouth for a reaction).

And S adores him too. He tells me that the baby is his best friend. And he also tells me that we don’t need a new name. His name is ‘Ogol’. Well at least someone is sure about a name .

Oh baby!!!

He’s here!!!Our gorgeous boy #3. Born 3.48pm yesterday 16/01/10, weighing 3.64 kg. Still not sure about the name….we’re home and happy. He’s just divine and his big brothers love him!!!

While things certainly happened fairly quickly (we got to hospital just 30 minutes before he was born) and progressed very smoothly, it wasn’t a totally incident free birth – those who know about S’s birth story will understand how freaked out I was to have a birth that involved the following phrases in the birth notes: “cord wrapped tightly around neck”, ‘mild/mod shoulder dystocia” and ‘oxygen required 1 minute’.

BUT he is fine. perfect. gorgeous.

I experienced some post traumatic stress flashbacks  but now doing great and loving the lil guy to bits.

What did I just say?

Hands up any parents who have ever responded to something that their child says with the words ‘really?’, ‘yes’ or ‘I know!’ when in fact you’ve not really been listening to what they’re saying.

My hand is high in the air. Both in fact. And yes, with a certain amount of guilt. However, I’ve been quite relieved to hear from close friends and family that they’ve done this with their kids on more than one occasion.

I know it’s not ideal, but wow, sometimes kids really have a lot to say.

And when you add in the fact that your child has seriously affected speech due to cerebral palsy, the temptation is great to just pretend that you’ve understood something when in fact, you didn’t actually get past the third word.

In my defence, S and I spend a LOT of time where I focus very carefully on what he has to say, where I help him to convey complex ideas using Makaton signing, the ‘PROMPT’ technique, his PODD communication book, his clunky Dynovox (that we’re looking forward to updating this year) OR with good old fashioned gestures or what I call ‘narrowing the field questions’ (eg ‘Is it something I can eat?’, ‘Is it a place we’ve been?’).

But all this takes times and there are times when I  just don’t have the time OR the energy to work through every single sentence.

And at age 5, S has a LOT to say. He wants to tell me what he’s doing. He wants to tell me what he’s just done. He wants to tell me what he’s going to do. He wants to tell me what he’s pretending to do and quite often he wants to tell me what each of his toys are doing (his teddy often goes to school or work, Dory the fish is often in hospital and Nemo seems to have a birthday party every week).

It’s a lot to keep up with.

Especially right now when I’m heavily pregnant and tired and spending a lot of time trying to pack up our house around him.

Believe me, I am NOT complaining. His speech was almost non-existent until about 18 months ago and I am honestly thrilled that he has now reached a stage where he wants to talk in long complicated sentence.

But the longer the sentence, the more chance there is that two things will happen – 1) there will be at least one word (often more) that has me bamboozled because it’s a new word or one that is particularly difficult for him to articulate and 2)the quality of his speech will deteriorate because he’ll be focusing more on getting the sentence out rather than articulating every sound clearly.

End of word consonants are a particular problem for him when he’s on a roll. For anyone unfamiliar with his speech patterns, that probably seems like quite an understatement. I know many people find it hard to understand a lot of his speech. But those who know him well can pick up more and more of what he wants to convey.

And of course, as his mum, I often have an advantage because I can make educated guesses based on the context AND on knowing what he often likes to discuss. (For example he’s particularly fond of talking about a flying car that could take him to Indonesia to visit his extended family there ).

So to get back to my original point, S has cleverly developed a new strategy of his own to counter any ‘really?’, ‘hhhmmm, that’s nice’ comments.

He will now ask me “What did I just say?” after he’s finished every sentence, if my response indicates anything other than perfect understanding.

And if my answer to that question is unsatisfactory, then he’ll insist we go back to his original question/statement/story and make sure I understand completely.

I am proud of him for working out this strategy, for insisting on being understood and for persisting.

But it was only just this morning, as I tried to discuss something with my darling husband as he was watching a soccer game in some far off land on TV that it clicked just where S had got this strategy from.

I was listing a half dozen jobs I wanted my husband to do after the game was over (moving day is two days away!!) and he responded with a ‘hhmmm, sure’. And then there was my light bulb moment as I heard myself ask him ‘What did I just say?’…..and realised I ask him that question rather often .

So now I know that S is not only getting very good at speaking, but he’s also very adept at listening and learning . I hope his dad is too!

A New Year (new house, new baby to come)…!

Happy New Year!

Sorry I’ve been missing.

Christmas, my birthday and New Year all passed in a bit of a blur as we planned, packed, survived heatwaves and MANY 2 year old tantrums, organised Aunty J to travel to Jakarta for her visa interview (already!) and generally just kept very, very busy.

And then my husband used up all our Internet allowance downloading who knows what so I was reduced to dial up speed. The slowing down was actually a pleasant relief – getting on line being one less thing to do. An enforced break from the Internet right at the time when there was so much to do ‘in real life’.

And now, here we are. It’s Jan 7th. Tomorrow I will be 38 weeks pregnant. The baby is not quite engaged, and possibly quite big. I had a scan which suggested he was 3.4 kg last week but the doctor at my most recent appointment dismissed this, saying 3rd trimester ultrasounds are notoriously inaccurate and I don’t  ‘look’ big.

Hhmm. I don’t feel big either. But at the same time. I don’t particularly want to give birth to another 4kg baby with the associated risk of his shoulder getting stuck during the delivery.

Again, the doctor worked on alleviating my fears saying that with a history of shoulder dystocia there would be little chance of anyone involved in the birth (probably me included) missing the signs of this happening and the situation would be dealt with swiftly, avoiding any injury to either myself or the baby.

Still. I am not 100% convinced.

I have another doctor appointment tomorrow and I kind of hope they’ll be inclined to consider inducing me at 39 weeks (next Friday or soon thereafter) JUST IN CASE he is bigger than he seems. JUST IN CASE something could go wrong.

I would prefer to go into labour naturally and have no intervention at all, but most of all I just want a healthy little baby boy in my arms.

I am STILL swimming. Still walking. And still hoping for another wonderful birth experience. But feeling remarkably relaxed about whatever will happen…

And we move house on Tuesday. We’re still busy packing and cleaning, sorting and decluttering. It still seems a little surreal that we’ll be moving into our own home, paying a mortgage and being very grown up with our almost complete family.

Exciting times.

It’s going to be a busy year. Hopefully a great year.

Happy New Year to everyone! I hope your year is wonderful too .

Gait Lab

On Monday, we had S’s long awaited appointment at the Gait Laboratory at the Royal Children’s Hospital here in Melbourne.

We started down the path of a Gait lab appointment because S has developed a habit of dragging (dropping) his feet when he walks in his walker, especially his right foot.

The question then needed to be asked – is he doing it because of tightness in his muscles? weakness? Some other complication related to an aspect of his brain injury? Or is it just plain old fashioned laziness because it’s just an easier way to walk?

I knew that whatever the case, we are really lucky to have access to the high tech Gait Lab at the RCH where we could get some expert advice on just what is going on with his walking.

I had envisioned that he would be wired up with electronic sensors that would analyse his movements, but as it was, all he had to do was walk up and down a long walkway several times, firstly in his kaye walker, with and then without his piedro boots) and then on his own (which  included many stumbles as he’s not managing that many independent steps without falls).

They had several cameras honed in on him that were recording his every moment from different angles.

All of this footage will then be analysed to look at just what is going on with his  walking. I didn’t ask too many questions (was too busy keeping S entertained us he walked up and down) but they recorded from several different angles and there were ‘plates’ in the floor that I imagine were also recording data about the way he was walking. All of this will later be able to construct a clear image of just how S is walking and what we can possibly do to improve his gait.

Very promising was the intial assessment of the lovely physio who ran the clinic. She believes that the Kaye walker (which S has used since he was 2) is probably just too easy for him now and he’s taking the lazy way out. This was the best case scenario we could have hoped for.

She also took some measurements of his hips, his foot movement etc but she was very happy with the flexibility that he has in his feet and agrees that there’s little sign of tightness.

We won’t get the detailed analysis until well into 2010 (the physio said possibly not until Feb because of Christmas, hols etc), but she has suggested that next year we should be looking into trying out some crutches or sticks with S.

I worry a little about how well co-ordinated his arms are to manage something like this, but will definitely be willing to give it a try.

Sorry there are no pics. I took the camera, but forgot the memory card. Yes, I really am nearly 36 weeks pregnant . This ‘virtual tour’ at least gives you a bit of an idea about what it looks like.

S was very happy to do everything that was asked of him, and was rewarded at the end with a very cute Santa hat with flashing stars on it.

And for us, that means an end to appointments for 2009. Woohoo! Bring on Christmas, my birthday, New Years, new house, new baby – all before the end of January 2010……

Christmas party time!

This year is the first year that S has been REALLY excited about Christmas. And I mean REALLY excited.

As he tells me about a hundred times a day ‘I can’t wait’.

We have done very little to instill him with such Christmas spirit. My husband, being from a different country, different culture and different religion doesn’t have much Christmas cheer and whilst I like Christmas, I think it’s best celebrated as a low key family affair.

So I can only assume that his very enthusiastic Christmas spirit has come from external sources – kindergarten, TV, local shops, friends. Who knows where else…..

As much as I haven’t done much to fill him with the joy of Christmas, I won’t say that I mind. I love seeing his excitement, his enthusiasm and his passion. For one, it’s totally age appropriate and I LOVE that. I love seeing him share the same excitement of other kids his age. I know I shouldn’t, but I do still find myself ‘checking’ to see that he’s keeping up with his peers.

M, on the other hand, is terrified of Santa. Won’t go near him. He also has no interest in any present that’s put his way. This thrills S who gets to open TWO sets of presents at Christmas parties.

And we’ve had several Christmas parties to attend of late.

A birthday party that doubled as a Christmas party because the grand-dad of the birthday boy is a professional Santa (how cool is that grand-dad!)

Then it was dad’s work Christmas party

We forgot to take our camera to the CPEC Christmas party but there was another Santa, lots of mirth and a wonderful Christmas play put on by some of the CPEC kids – so amazing to watch the kids, some with very limited mobility and speech use Voice devices, walking frames and a bit of help from a parent or carer to put on a nativity play and a Santa play. They’d been practicing for weeks and their enthusiasm was priceless! One of my fave ever performances!

Then this week, it was the kinder Christmas concert and party. S surprised me by his ability to stand unassisted for several songs, jingling his bells happily along with the other kids.

There was a bow at the end

And then LOTS and LOTS of Christmas party food (S was the last to leave the table!)

And because we can’t get M into the Christmas spirit (yet), here’s a few pics showing what he does LOVE – animals.

His first horse-ride

Cuddles with a bunny

And patting baby guinea pigs

Christmas cheer to all!

8 DAYS!

8 days of good blood sugar readings. Woohoo!!

I have been such a good girl (OK with the exception of yesterday at my husband’s work Christmas party where I did eat a few naughty things!).

I have stuck to the low GI diet and been very diligent with my exercise. I’ve been rewarded with not only low good blood sugar readings but also with more energy and a real sense of satisfaction. AND I’ve lost a kg  (don’t worry, I’d already gained 11kg so losing a couple at this stage is not a problem!)

I wouldn’t go as far to say that I have gestational diabetes beaten – it apparently can get harder to maintain lower blood sugar levels as a pregnancy progresses, but at 33 weeks now at least I kind of feel like I am on the home stretch.

Still have to survive a few more Christmas parties, Christmas itself of course and then my birthday, but I am staying as positive as I can that I will keep things as under control as they are now.

And just for a bit of hilarious irony, guess who won a 3 kg block of chocolate today at the CPEC Christmas party.

Yep. It was me!

Really, I’ve just got to laugh (and hope that there’s at least a little of it left after the baby arrives) !!! .

Time for a change

Seeing as many people who read this blog now know us, I have decided it’s time for a name change for the boys. I still want to keep a bit of privacy, but from now on will call them just by the first letter of their names – that is ‘S’ (for BC) and ‘M’ (for little Bean).

Incidentally, given that S was born in September and M was born in March, I am now feeling pressure that baby number 3 (currently only know as Ogol and with no ‘real’ name in sight yet) needs to have a name that starts with the first letter of the month he’s born in as well, especially when Dianne (me) was born in December and A (my husband) was born in April. So, with baby number 3 most likely making an appearance in January. I am particularly on the lookout for a good ‘J’ name…..

Yes, I really have mellowed out today, haven’t I – possibly to the point of the ridiculous, but especially with my blood sugar levels sitting perfectly in range today, it’s a very very nice feeling .