I'm a 42yo online communications & IT consultant, and ex recording artist, from Melbourne, Australia.

After much searching, I finally met the right man. Then I got pregnant at 41 - baby boy was due 20 April 2010.

It was to be quite a journey. We discovered via ultrasound that our baby had some health problems, namely a hole in the heart, hypospadias and IUG growth issues.

Then I became very ill with pre-eclampsia, and was admitted to hospital at 34 weeks gestation.

Our baby Charles was delivered prematurely on 16th March 2010 weighing a tiny 1460g (3.5 pounds). He spent a month in hospital before coming home.

Duane's what??

So Baby Charles has Duane's Syndrome Type 1.


Yes, that was my reaction. Duane's what? I said.

It is an eye condition, whereby one eye is restricted in its movement. Charles' right eye does not move to the right.

You can read more about it here:

and see an animation of how it works here:
(Charles is the top one - but he has it on the other eye)

What can we do? I said. Nothing, said the very kind paediatric opthalmologist we saw. There is no cure.

Am still absorbing what this means. The opthalmologist says Charles will learn to compensate for it, by adjusting his head, positioning himself in the room so he can see best, and so on. He will learn to hide it, she says.

I am distressed at the idea that my child has something that cannot be cured. I go home and weep. How many more knocks can we take?

But now I am simply determined not to let it affect Charles, or stop him from doing anything he wants to do.

Today, a tooth - tomorrow, the world!

Baby Charles is now 6 months old. That's his real age. In terms of his developmental, or corrected, age, he's just under 5 months old. It's complicated trying to calculate and explain that, every time someone asks - such as the nurses at the local health centre, who need to know the specifics in order to work out whether he is meeting his developmental milestones.


Charles was very tiny when he first came home from hospital, after spending a month in the hospital's Special Care nursery, but he has caught up amazingly. He is now only very slightly smaller than the other babies in my local Mothers' Group, who are all of a similar age range. When Mothers' Group started he was WAY smaller.

He is a little behind in physical terms, which is to be expected given his small size, due (as I mentioned in earlier posts) to him being growth restricted for unknown reasons while in my womb (this is known as IUGR). He doesn't do tummy time quite as well as the other babies, although he is progressing. He's not rolling over yet - unless you count putting his legs in the air and kind of falling to the side. I don't see him crawling any time soon.

However, he is a bright little chap and is generally meeting all his milestones. I am so proud of him. He had such a rough start but he has done so well.

His heart condition, which scared me so much when it was discovered, has healed itself. Yes, really - healed itself! Isn't it amazing what the body can do?

He had two tiny holes in his heart when born. One has now grown over and the other become so small that the cardiologist says it no longer matters. He still has a tiny heart murmur, but that too no longer matters, we're told - many people live long lives with similar conditions. Our cardiologist thinks it's likely the final hole and the murmur will have gone by the time Charles turns one.

We were so relieved to hear this that we shed tears of joy in the car home, and then danced madly around the house all evening - Charles in our arms.

And now our baby's first tooth has peeked through his bottom gum. I was so excited! Today, a tooth - tomorrow, the world.

Our next major event - apart from solid food, which we will begin when he reaches 6 months corrected age (7 months real age) - is Charles' first hypospadias operation. This will be in three months time, and will not be easy. A second, more difficult operation will happen around March next year, when he'll be a year old. We have the best surgeon in Melbourne and we are confident. We have to be.

Once all that's over, Charles' rough start should be but a distant memory.

Baby comes home...

On 11th April, little Charles came home.


He was very small. Even though he'd grown so much while in hospital, he was still only 2kg when he left (4.4 pounds).

The nurses recommended we didn't take him out of the house for at least a month, until he'd reached a size more consistent with the average newborn. His immunity would be low, and his ability to keep warm lessened by his low body weight (it was almost winter and getting colder). So we were to stay indoors and keep visitors to a minimum.

That was just fine by me. I just wanted to get to know my baby and also to rebuild myself after all the drama. Quiet time at home with my baby was what I wanted more than anything.

We carried him carefully to the car, put him in his car seat and then, with me sitting next to him in the back, drove home. He barely moved.

At home, we put him on our bed, in his sleeper, and just stared at him for hours. I took the above photograph.

And that first night, I barely slept a wink, and constantly watched over him. His cradle was next to my side of the bed - I couldn't even think of putting him in the nursery.

We were lucky, in that he'd come home from hospital on a schedule. I just needed to follow it. He fed every 3.5 hours, pretty much by the clock. This made it easier for me, in that I could plan my day.

He slept and slept. He also threw up his milk, and did the usual things baby do. I floated about the house for some weeks, enjoying caring for him, delighting in my baby. He slept, and slept some more.

We experienced no issues with his heart - something I'd feared, and which made me watch him closely. We were to go back to the cardiologist when he was three months old.

He was due to start seeing the hypospadias surgeon soon too, and I knew there would be surgery to plan and deal with.

But for now, we just wanted to get to know him.

I was terribly emotional for some time - hormones all over the place. When he cried, I cried too. I hated to think of him being in pain, or upset in any way.

But apart from that, I loved caring for him. I loved doing all the little things, like organising his clothes, doing his washing.

I really felt like a mother at last.

Special Care

It's late March 2010 and baby Charles is in an isolette (dubbed The Glass Box) in the hospital's Special Care Nursery, where premature babies are cared for.


At 35 weeks, he is one of the oldest babies there. However, due to my inter-uterine growth restriction issue (see earlier blog), he is also the smallest baby there by far. He is breathing unassisted and is relatively well developed, but, at 1.4kg, he is SO tiny. Other babies there are much bigger in size than Charles, but as they were delivered at lower gestation ages, they have other problems such as undeveloped lungs.


Special Care is staffed by cheerful and welcoming women who care for the mothers almost as much as the babies. I spend my remaining time in hospital, while recovering from my caesarian, creeping into Special Care at all hours of the day and night, to sit by my baby.


Generally I sit there and cry.


He is too small to suck and so he is fed Nan formula via a tube through his nose. This causes problems with my milk production - despite the best efforts of lactation consultants, his prematurity and the lack of a sucking baby (plus, possibly, the medication I am on) means I don't manage to produce any milk for him.


I weep still more, and feel like a complete failure.


I put my hand into the glass box and stroke his head. I talk to him - and he appears to react to my voice. I watch over him and the nurses watch over me.


He is treated for jaundice and wears tiny little sunglasses. Once each day he is brought out for a kangaroo cuddle, which involves him being put down inside my t-shirt. When he cries, he sounds so weak and tiny. I cry too. Constantly.


But he is a fighter.


I leave hospital and commence the daily visits in to see him. I am so freaked out at first, upon returning to the real world, that I jump at loud noises. I continue to cry at the drop of a hat. Quite traumatised, I realise later.


After about a week, I stop crying. After two weeks Charles starts to rapidly put on weight, and the nurses encourage him to suck a dummy, in preparation for life after the feeding tube.


Eventually he is fed for the first time from a tiny bottle. The look of astonishment on his face is priceless, and I laugh for the first time in weeks.


The weeks pass. As I continue my daily visits (I'm proud of the fact that I never missed a single day) he leaves the isolette and moves to a proper cot. He is fed more and more milk by bottle and eventually his tube comes out altogether. He puts on more and more weight.


The cardiologist scans him and is pleased with his heart - apparently he has two holes, but they are tiny and he is hopeful they'll both close over as baby grows. He is in no immediate danger. A small light appears at the end of the tunnel.


The peadiatrician is also very pleased with him. "He's punching above his weight", she continually tells me. Eventually, at 1.9kg, with his appetite increasing by the day, he is allowed to come home.


My motherhood journey begins in earnest.

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