That's how she rolls

Lily has never done anything when she has been expected to. She was born in her own time, and has met every milestone since in her own time. From being a fairly precocious talker, to, at one week off 6 months being flat out horrified by solids, nothing can be certain with our little girl. Her absolute favourite thing to do to us is to do something over and over and as soon as you get out the camera, video or still, or try to show her off, she flat out refuses.

This week has been no exception. Following the guidelines in What to Expect the First Year, the advice of her health nurse and her paediatrician, I have been expecting Lily to roll "any day now" for about 3 months. It had gotten to the stage where I was genuinely worried, although 3 - 9 months is normal, with 4 - 6 being average. Not because she hadn't met the milestone, but because she was showing no interest and seemed to be trying to glide right on past it, now sitting with just the support of one of our hands to balance her and standing up whenever we give her the opportunity (although the few times I've tried to encourage her to hang on to something other than us has been met with a firm sit down protest), but because she hadn't rolled not being able to pull herself up to achieve the final part of these momentous milestones.

And then she did it. No warning. She hasn't even done her patented "roll off Mummy and Daddy" for about a week. Tummy to back, over she went. And I wasn't there.

Of course, I WAS there for her other milestone, met on the early end of of normal this time. She passed a rattle between her hands. Ever since then, she has "worked out" toys. She loves to make things with noises go over and over and over AND over again, she is SURE that her pram links come apart, but hasn't quite worked it out yet, and one night, when her teeth were really bad, we gave her cold water in a sippy cup, and sho took the handles and drank from it herself. You could have knocked me over. She's never even SEEN a sippy cup before, let alone used one!

Oh, and let's not forget the fun game of pulling the dummy out of her mouth, and putting it back in, and pulling it out and.... Well, you get the picture.

And finally, teething. Like everything done in Lily Style, she's doing it her own way. For a long while now, she has had both top molars, not out, but the sharp little points have cut her gums, leaving no room for suspicion of them being something else, and this week, it seems, she has been working on the bottom ones. Poor little girl has been MISERABLE. We can see the white bulges and feel the hard lump, ready to push through, but they just haven't. I hope they do soon. I miss my all day smiles and giggles girl!

So it's been a busy week for our girl, who is now 4 months corrected and just a week off 6 months actual. And that's how she rolls.

Bob pops the Question (About damn time)

Knowing that we were going to be "poor" once our house was built, and tentatively planning a baby for 2010, Bob and I decided to have one last hurrah. We were going to go to Melbourne in the June/July school holidays. Wicked and Avenue Q were showing, there was an awesome Star Wars exhibition on at the Science Centre, I wanted to take Bob on a wine tasting and of course, we both wanted to shop!

The first Saturday we were there, we decided to bust out the CC and have a really nice dinner on Laigon Street and hang the cost!

We chose a nice looking restaurant, whose name escapes me, and order entrees and pre dinner drinks. I REALLY wanted a cocktail but Bob insisted on buying champagne. Bob can usually take or leave champagne and usually likes me to enjoy a cocktail before a nice meal, so I felt bemused. Even weirder, Bob was super anxious when the entrée arrived first. He is  usually laid back, while I fume.

The glasses barely hit the table when Bob asked me to close my eyes. By now, I'm not gonna lie, I knew what was happening. He slipped the ring on the wrong finger and asked me to marry him. It was cute and he was soooooooooooooooo nervous.  I just about laughed at him instead of saying yes.

I can't remember what I ate, I do remember I drank A LOT of the free bottle of champagne they gave us, before we had to scoot off to see Avenue Q. It was a long bloody time coming, let me tell you!

The rest of the holiday was AMAZING. Wicked is the best musical ever and we are going to see again for our 1 year anniversary. The wine tour was delightful, the Star Wars exhibition lots of fun.We had to buy a second suitcase for all our purchases!

We returned home on the Friday night and by Saturday night, I had order about 50% of the big stuff for the wedding, including The Dress. But that's another story.....

The Trifecta..... Almost

I'm going to take a break from Lily's beginning to update you on Lily's now.

This week, Bob and I made the momentous decision to move Lily to her big girl bed and also to begin using the big girl bath. We talked about it, planned it, and decided Tuesday was THE DAY.

Following the advice of my bible, What to Expect the First Year, I was planning on choosing a time she wanted to play and getting in the bath with her. However, she fell asleep during her early evening feed and being her mother's daughter, we decided to let her sleep, as she is nobody's friend if you are rude enough to wake her. So we had our dinner.

As is Lily's style, she woke up the minute dinner was served, but she was happy enough, so we carried on with our meal. Well, our food clearly took Lily's fancy, because she stared at it like a starving man. She's always been interested in food, but this was a new interest. She WANTED some of that and she wanted it NOW. When we weren't polite enough to share, she did what any hungry baby does when no one is willing to deliver, she ate her hand. I'm surprised she didn't actually eat her hand as she seemed more determined than usual to fit the whole thing in her mouth.

We decided it was time for solids. So I busted out the Farex and the stored breast milk and made her a bowl. I'm still not sure she ate any. With a logic only possessed by babies, she decided that while she would willingly take each mouthful, she would also spit approximately half of it out and replace it with her fist. It was in her hair, her eyebrows, all over both hands, up her arms, on her knees (ask her how she got it there, I was watching and I still don't know). I'm not sure her clothes will ever be the same. Can they return from crusty lumps of Farex?

Her overall reaction? Bored.

Five days in, it still is. She swallows more now, and doesn't need a fist chaser, but she could take or leave her solids. Never mind, we'll introduce something with flavour this week, maybe it'll be more successful.

Anyway, with Farex in all her face orifices, it seemed a bath was timely. And boy did she ever love it. Talking to Daddy and Mummy, kicking around, having a go at getting the washer in her mouth. She had a lovely time, and has since. It also turns out, as we learned Friday night, a warm bath turns a devil spawn baby into an angel. Excellent to know.

At this point I asked Bob if he was going to move the cot into our room (one step at a time, people).

Nah, she'd done enough tonight, tomorrow night.

Five days later, she's still in her bassinet. Lucky she was born pocket sized. I think it'll come to a point where her weight takes Daddy's choice away.

Well, one out of three ain't bad.

UPDATE: Lily just delivered Daddy with her first post solids nappy. What a good girl!

Paul's Post

Paul's story is linked with Lily's too. Paul is Grandma's eldest nephew. The son of her older brother, Micheal and a favourite. Grandma has many cheerful stories about Paul and his mates coming to stay with her during long road journeys which she loves to pull out. She credits her son's, also Micheal, wanderlust to Paul, who he appreantly herocised.

Paul was a big bloke with a big beard, a motorcycle and giant heart. He was loved not just by his family, but by his community, especially his motorcycle mates.

The last time I saw Paul I was 13 and I don't remember him well, I do remember he was kind and a good father and husband. If a self centred 13 year old can percieve these things, then it must be so to an enormous degree. Still, with little memory of Paul, the news we recieved on 7 May 2009 may as well have been a wrecking ball, the way it hit.

Paul had been hit by a truck just outside of Gin Gin on his motorcycle and he had died instantly. He was on his way to his Uncle Ken's funeral.

Paul was just 44 when he passed away. He left behind his beautiful wife and three gorgeous kids. A tragedy in the truest sense.

RIP Paul Chapman, 29 March 1965 - 7 May 2009

Poppy's Post

It took me a long while to decide if I was going to include the passing of my poppy in Lily’s story, but truly, it would be incomplete without it. It has also taken me a long while to decide what to say about it. I tend to prefer to be very clinical in my approach to public expression of grief. It works better for me. So excuse me if you feel I’m being cold or unfeeling. I assure you that I feel it just as acutely as you would in the same situation.

By Easter of 2009 it became clear that Poppy’s pancreatic cancer was getting the better of him. While before, his pain had been manageable and he had looked reasonably well, he was now very thin and often clearly in pain. It was also Easter that Bob and I moved out of our rented apartment in Kelvin Grove and into Grandma and Poppy’s house to remove the financial burden of renting and building.

At the end of April, I woke in the early hours of the morning. I can’t say what woke me, but something felt very wrong. I went to check on Poppy and he was not there. Neither was Grandma. Frantic, I was still sure that I would have heard an ambulance had it come to the house or that Grandma would have roused me had it been a dire emergency. I rang her over and over, trying to find out what was wrong, but she did not answer. At about 5 o’clock, Grandma FINALLY returned my calls, explaining that Poppy had been attempting to manage his pain with pain killers that were far too weak, and that morning it had gotten the better of him. Grandma had taken him to the PA Hospital, where they had brought the pain under control and provided him with much stronger pain killers. Otherwise, he was in the best of health for a terminal cancer patient.

Exhausted, I decided to take the day off, and went back to bed after they returned home. At about lunch time, the phone rang. It was Grandma. Poppy had been in a car accident and she needed help getting him out of the car. Feeling very stupid, I wandered down stairs, still wondering if I had heard her incorrectly. Sure enough, Poppy had been in a car accident and he was very confused. We couldn’t lift him out or Grandma’s car and he seemed unable to cooperate. I fetched him his cigarettes and his transistor radio (it was a wonder it hadn’t been with him) and when I walked up to him I held up the cigarettes for him to see. He asked me if I had brought down his cigarettes. Astonished, I REALLY looked at him. Having before only taken in how grey his face was, I had missed the slackened left eye and side of his mouth. He had had a stroke. 

I immediately rang an ambulance, which was forever in coming. Long minutes seemed like hours (Here, I am going to mention that this was what always made me furious about the sobbing, whining women, both male and female, who would call ambulances for sprained ankles at the netball centre. Ambulances are for emergencies, not your barely in pain, attention seeking self). In the end, FORTY minutes later, I rang the ambulance back, cancelled it and we drove Poppy the 5 minutes to Greenslopes Private Hospital. The same hospital Poppy had decided would be his last destination.

At the hospital, he became furious with us for not parking in the emergency entrance, even though we were parked right next to the sign.

The wait in emergency was long, and we often had to remind nurses and doctors to give poppy drinks, pain killers and to take him to the toilet. With the 20/20 vision of hindsight, I can now say we should have bailed then. But we were worried and that is where Poppy wanted to be.

It was 8:00pm before he was settled into room, dosed up on all his medications and in a position where Grandma felt she could leave him.

The next morning, Grandma arrived at the hospital to find that Poppy had been left all night with no nurses’ attention, even though it was in his chart to have frequent pain killers. He had been calling out all night, in pain, desperately thirsty and needing the bathroom but unable to get up to get help. When Grandma questioned why, they said he had not pressed his buzzer. They had left the buzzer right next to his stroke blinded eye, meaning even if he could see it, he couldn’t have picked it up. The next night he was moved right next to the nurses’ station and it was better, but not good and we arranged to have him moved to Mt Olivet as soon as possible, which meant one more night in at Greenslopes.

That day, I took him for a cigarette. He is fairly lucid, and explains to me that he doesn’t want to die, that nobody really wants to die, but that is the lot he has been given and he has accepted it. I feel sad, but say something inane and positive.

That night was the worst. Poppy was now mobile and was enjoying his cigarettes fairly regularly and sometime in the wee hours of the morning he had decided he NEEDED ONE NOW. He went to the nurses’ station to get them to ring Grandma. A mixture of strong pain killers and the stroke made him unable to communicate correctly and when he asked for Grandma, and they refused (it was about 2 am), he became aggressive. It should be noted, this was a stroke victim, dying of cancer, who weighed MAYBE 60kg ringing wet, a 10 year old could have beaten him in a fight. And rather than call Grandma THEY CALLED SECURITY. I bet the 100kg +, 6 foot Maori dude felt tough menacing my pop. In the end, they called my Grandma, who figured out what he wanted simply by taking the time to observe and noticed the lighter in his hand.

The next afternoon, he was pleased to be moved to Mt Olivet, which before he had dreaded because of its “final port of call” connotations. Let me tell you, if you have no better prognosis, go to Mt Olivet, it is beautiful. It smells of fresh flowers, because that is what it is decorated with, the beds are covered in homey, handmade quilts and the food is all lovingly handmade and delicious. The nurses are gorgeous; cheery, friendly and patient. They don’t mind making 2 am cigarette calls!

So we come to Poppy’s last week. At first, nobody knows this, except maybe Poppy. He is eating something, drinking coke and water, taking his medications and enjoying his cigarette journeys to the lovely gardens. The doctors feel if they find the cause of the stroke, they can manage it and he can come home under palliative care. The pancreatic cancer is there and aggressive, but it will still be a few more months before it takes its final toll. He is scheduled for a cat scan the following Tuesday and in the meantime is doing daily occupational therapy. But each day is worse. He eats less, and drinks more coke instead, he is smoking less and lasting a shorter amount of time out of bed. Around Wednesday, he starts to refuse his medications except for pain killers. The nurses know this means he is coming to the end, but we think he is just being stubborn.

He mentions to me that he just wishes his brain wasn’t so fuzzy, that he wishes he could communicate properly and remember what was going as his short term memory is shot to pieces form the stroke.

On Thursday, I buy him some cigars he wants, but don’t take them up. He rings in tears shortly after dinner, and I feel horrible. We rush them up, and he is happy, he even enjoys a coke!

The next afternoon, I am scheduled to go to Sydney to visit family, but I feel very uncomfortable. What happens if he can’t remember I’ve gone, and calls Grandma in tears again? Even worse, what happens if he dies, and I’m not there?

But family and friends reassure me, Grandma and Poppy reassure me, and I decide not to change my plans. Before I leave, I want to say, “Don’t you die on me, I’ll be back Monday, you wait that long, if you’ve got to go.” But I don’t.

On Sunday night, Mum rings me, telling me that Poppy is dying. I don’t believe her, and ring the nurse at Mt Olivet and she tells me to come home. But I won’t make the last flight thanks to Sydney’s curfew rules. We try to make the 6:00am flight, but miss the ticket cut off by minutes. As we walk through the baggage check to the lounge, my phone rings. It is Grandma and Poppy has just passed away.

It feels like someone has grabbed me by the head, arms and legs and pulled with all their might until I’ve torn into five pieces and the centre of these pieces is my heart. It hurts the same as any physical pain, and for a moment I think I might die, and then I cry instead. All this takes a split second.

When we finally arrive at the hospital, he’s laid out cleanly and beautifully. Bob says his goodbyes, and then leaves me to say mine. I kiss him and cuddle him and say over and over that I love him and I’m sorry I couldn’t be there for him. But he is not my poppy. He is hard and cold and gone. I don’t remember him like this, ever.

I wanted to say more, but that is all I can say.

Rest in Peace, Captain Kenneth John Barnett, 24 December 1943 – 4 May 2009.

The Price of Love

Apparently it takes $600000 to raise a child to age 18, with the first year costing up to $13000! The figures are enough to make you to send your husband out for a vasectomy and buy a dog.

Luckily, neither Bob nor I looked too closely at these figures 'cause boy did Lily ever give us a run for our money (HAHA) BEFORE she was even concieved. As unmarried renters cruising around in a '91 Corolla, we were not in any sort of position to bring a child into this world. So we bought a car, house and land and got engaged.

Total cost? $500000

 Expensive little shit, ain't she?

Twinkle in our eyes

Lily's journey begins before she was, as my pop would say, a twinkle. Meaning that her journey starts long before full consideration had been given to having children by her father and me.

In late November 2008 I went for a routine pap smear. In early December I recieved the earth shattering news that the pap smear was positive. It rocked our whole family to it's very foundations because in October of the same year my pop had been diagnosed with terminal pancreatic cancer. The same day I was given a referral to Dr Marcello Nascimento, a cheery, heavily accented, soccer loving, South American, Gynaecologist/ Oncologist. He explained that pap smears often revealed false postives, that cancer was a rare outcome for a postive GP smear and that if anything, it was likely to be easily treatable Carcinoma In Situ (CIS). I had a charming procedure called a colposcopy which revealed a postive CIS diagnosis.

CIS is treated with a day surgery called a cone biopsy, in which a cone shaped piece of tissue is removed from the cervix, aiming to remove all the CIS cells before they have the chance to become cancerous. I had this surgery in mid December, and after a few miserable days was feeling almost back to normal and I was fully able to enjoy my grandfather's precious last birthday and Christmas.

At the follow up appointment, Dr Nascimento said they had not removed as much tissue as they would have liked and there was a risk they had left something that should have been removed behind. In early February I had a second procedure. The follow up appointment from this procedure would change Bob's and my life forever.

Despite Bob's protests, I asked the question that had been clanging like a bell in the back of my mind since that terrible day in early December.

"What about children?"

Dr Nascimento's reply? "If you were my sister, I would tell you to have a baby."

He explained that there was a high risk of the CIS returning in my future, and at that stage a hysterectomy would be the preferred treatment. In fact, had I been older or had I already completed my family, that would have been on the cards this time round.

The bottom fell out of my world. I think I was also lucky that my boyfriend didn't fall off his chair.

Once we had recovered, we both left that office with a twinkle in our eyes.

Why this blog

There are a lot of blogs that chronicle the journey of premature children and their families. Many of these blogs focus on children who have somehow been damaged because of their prematurity, or whose parents have had a long trying to concieve (TTC) journey, filled with heartache, or both. While these stories are important, this blog is about neither. It is about the joys of raising a perfect girl who just happened to be born too little!

I have felt, in my journey through Lily's prematurity, that often information available to parents is something like a Worst Case Scenario handbook, where the people that have had harrowing journeys are more likely to relate their experiences. I want people to know that having a premature baby can be an overwhelmingly joyous and rewarding experience. So that's why I'm keeping this blog.

I'll hopefully be posting about once a week, but for a little while I'll be catching up on Lily's story. From why we decided to have her through to her NICU journey, and then beyond! This means I'll be posting a little more frequently. Maybe. If the princess allows it.