Three Ring Circus

Ivy slept through the night.

 Oh. Yes. She. Did.

Okay, she woke a couple of times and they said there was one episode of apnoea… maybe. They were very non commital about it all.

But for all intensive purposes, she had a great night’s sleep and a great night’s sleep means no tonsilectomy. No tonsilectomy means another year of terrible chronic illness. The truth is, I’m not sure I can cope. There I said it. No super Mum living under this roof.

ARRRRRRGGGGHHHHH!

The nurse came in at 6am and little miss ‘I never sleep through the night’ was still asleep! She asked me if this was a usual night for Ivy. I didn’t know whether to laugh or cry.

Ummm, no, if this was a normal night, I would not be here having a sleep study, I would be at home with the other children. I would not have put my baby through electrodes  being plastered on her scalp and all over her face. I would not have held her down while she screamed blue murder as the oximeter was applied to her toe or the nasal prongs under her nose.

To say I felt like a fool is an understatement. To say I was made to be a liar by my precious daughter, a bigger one.

So we scrub the plaster from her curls and pack ourselves up, hoping to scurry away with tails between legs but we are stopped by the nurse. Don’t worry she says, alot of patients sleep through the first time, it just means she’ll have to repeat the test.

I don’t think so.

We won’t have official results for eight weeks. EIGHT WEEKS! Lucky this isn’t life or death.

I inwardly laugh. Nothing happens quickly around here. Not. A. Thing.

As instructed, we phone the ENT doctor to give him initial results and to talk to him about whether we will go ahead with the adnoidectomy without the tonsilectomy.

I have already discussed this at length with the paediatrician, the afternoon before the study and have decided that it is better the devil you know than the one you don’t and Ivy and I will fumble through another horrible year of illness, wait it out until she is three, an age that is deemed acceptable to perform T & A’s with little risk of bleeding, rather than put the Ivygirl through two general anaesthetics in six months.

Just to add to my merriment David calls to tell me that the ENT doctor has closed his rooms until December.

Why would I expect anything more? (Insert crazy laugh of choice here).

At least the paed appointment was more productive.

So as not to bore you I will put it in point form.

• Ivy’s last lot of bloods came back ok, except for her t cells. Which were low.
• He explained this might indicate immune deficiency (yep, knew that already) but that her
• Ig’s were all normal, so maybe not. He said;
• Ivy was a complicated case,
• he didn’t know what else to do for her at this stage and could we try
• long term low dose antibiotics for a while. (hmmm, I thought we had been on long term antibiotics for oh, say, TWO YEARS already)!
• Anyway, I said I would give it a go because
• Ivy’s bowels and gut are now playing up with the high dose aggressive antibugs
• Ivy has lost close to 700g (by hospital scales) in three weeks (600g by paeds scales).
• She will only eat bland foods and that isn’t helping her to get better, it’s not even helping her bowels.
• She is lethargic and miserable for alot of the time.

The paed’s reasoning is if we can keep infection at bay and not hope for a cure, (because he has seen the light and knows that is not likely to happen) for an extended amount of time, it might give her a chance to pick up her game, start to feel better and therefore give her an increase in appetite and allow her to put on the weight she has lost.

I’m all for wellness at this stage.

• Ivy has had blood tests again (results pending)
• and stool samples have been sent too (pending)
• Low dose Erythromycin started yesterday

This afternoon, she is playing outside, in the grass with Noah and Maddy. It’s nice to hear her laughing for what seems like the first time in ages. She looks… small and tired but play and laughter has gotta be good. In anyone’s books.

As for me, I was as open and honest as I could be. I told him I didn’t know if I could do it for another year, watch Ivy struggle and be helpless in, well, helping her. Nurses and control freaks don’t like not being in control at all and I am both of those. He suggested we limp through 2008 together. Hmmm, I don’t know if I will hold my breath.

I’m thinking an increase in the crazy pills are in order.

I asked him about doctors being friends with clients and all the rest of that stuff that has been bubbling through my mind and blog of late but, as this post is so long, I might have to leave all that for another day.

Oh, pictures of Ivy during sleep study to follow just as soon as I work out how to download from my phone. My husband has seemed mysteriously absent for a large part of this month but I will hit him up for some much needed IT help soon.

* Edited to add, photos now up - thanks Dave, sorry for the poor phone camera quality.

Just when I thought it was never going happen.

The Sleep unit called us and Ivy is having  her sleep study tonight!

We came to the top of the cancellation list!

We are going straight after we see our wayward paed.

After two nights of waking up every hour on the hour if she sleeps through tonight, I am going to scream!

Wish us luck.

Oh my goodness today was a big day!

Last night Ivy took a backwards slide and decided she would cry all night. I don’t know for sure what was going on but by the morning, her temperature was through the roof again. Come daybreak though she was brighter and I thought the worst had passed.

Sadly I was wrong.

The girls had to be in Newcastle for their full dress rehersal of their dance concert this morning. Early. I found out about this on Friday night when Ivy and I came home from the hospital. I don’t know why I forgot… stupid! Vague headed me.

To say I was in a panic was an understatment. I hadn’t paid for costumes, I had to do full make up for three girls and buns as well.

Anywaaaaaaay.

We made our way into town and Noah was his usual happy, easy going self but Ivy…oh, Ivy! She cried and asked to be picked up and when we picked her up she cried some more. She scowled at anyone who came anywhere near her and smacked out at the other children. She was pale and her nose was running terribly.

We had planned to spend the day in Newcastle but Ivy was so very unwell we decided to go home.

She slept on the way home but woke in an even worse mood.

Poor baby.

She just could not tell us what was wrong. Despite panadol she followed David and I around, everytime we put her down (for a toilet break, to hang out school uniforms, to start preparing dinner) saying … ‘it hurts’. Even taking her outside (her treasured outside) just didn’t cut it today.

I felt so sad  that there was nothing that I could do to make it better for her.

David left to pick up the girls and that is when Ivy really lost it.

It is mentally and emotionally exhausting when she is sick and I would love to just sit and cuddle her all day but I have Noah and the other kids to think about too. Maybe the paediatrician was right. Maybe we should have stayed in the hospital for an extra couple of days.

You’ll all be pleased to know that she is tucked up in bed asleep now, medicated with pain relief, antibiotics and chest rub.

Tomorrow will be a better day.

It has to be.

She sits in the chair of the darkened room, hunched over the small, defeated, ball of her child. She worries over this baby because she is always ill.

The day has been a big one. Crying, clinging and high temperatures. After the first convulsion, the child, a girl, has not moved from her lap until the next fit exploded from her body and left her motionless once again.

She is scared and feels alone in the place where she is. She cannot think who to call for help, except for her husband, who is still two hours away from home. The boy child has pottered around for most of the day, seemingly unnoticed but she has seen him, her heart aches to pick him up and cuddle him. Kiss him and tell him she loves him but for now, it is as if she is bolted to the chair by the weight of the girl, unable to move for fear of another convulsion.

Another daughter has remained home today and she is grateful of the help. She does not think she would have survived this day without her there.

For all the world, she wants someone to take this out of her hands.

Finally the paediatrician calls and the decision is made to go to the hospital.

She has a dislike for hospitals, even though she works in one and her trust for doctors is little but the paed has assured her that she will spend as little time in the emergency room as possible and because the girl child is not recovering well from the last fit and because she feels as though she can do no more for her baby she admits defeat and takes her. For the first time in days feels relief.

The emergency staff are efficient and kind. There are people everywhere, movement and blurs of people striding past in their urgency to provide care. In one booth she and her baby sit; the child is still on her lap but she watches everything. For an instant she wishes she were on the other side, giving the care instead of needing it.

Soon the girl child is ready, is canulated and a drip has been started. During it all the girl only cries a little and while everyone comments that the baby is brave, she knows that the girl is beyond caring.

They arrive in the children’s ward in the early hours of the morning. The nurses are friendly and sweep the pair into their room to sleep for the last few hours before sunlight.

It comes too soon and the girl child remains silent and unmoving. Her eyes have a glassy, vacant stare. Her breath comes in quick, sharp gasps. The child only moves when the nurses come to check her drip. Then she screams.

She is still worried about her baby but now it is a shared concern as the paediatrician arrives and looks her over. Another night, more antibiotics. Another 24 hours and the girl will be fine, he soothes the mother. She looks into his green eyes (had she noticed that before?) and finds reassurance and a kindness for the girl child.

Friends ring and some come to visit. The day is both long and short at once. The girl child picks up when the boy and her daddy arrive but she tires easily and when they are gone she falls asleep.

She can see improvement though and feels in control again as she snuggles next to her baby.

Now another morning is here and the sun is shining in from the window. The girl child has woken, like the day.  Fresh and new.

She smiles for the first time in days and kisses the girl child, who responds with a hug.

It is going to be okay, she thinks as she feels her heart begin to beat once more, as she hears herself exhale from the breath she has been holding.

By the Threeringcircus Technical Consultant, recently promoted to Sub-editor:

Your regular author sends her apologies for being unable to blog today.

Aparently it’s been too long since our last hospital admission. Despite our best efforts at managing the situation, we eventually conceded defeat and young Ivy was presented to hospital late yesterday.

As of this afternoon, things are improving - although I can’t include Ivy’s demeanour in this sweeping statement. She certainly has her mother’s critical eye for healthcare standards.

Unfortunately our insurance does not extend to bedside internet access. Nor did the recalcitrant Technical Consultant make alternative arrangements for same.

As a private patient, Ivy did receive a complimentary newspaper with an interesting cover story. I think the irony was lost on her, as her focus was more on stressing the insult of having an I.V. line in the back of her hand. When Noah took pause from his latest book fixation to inspect Ivy’s bio-enhancement, he was told in no uncertain terms, that the "hurts" was not to be touched. As always, chocolate proved to be the most effective distraction.

Hoping to return the the regular schedule shortly.

The start of Daylight Savings means you sleep in.

Did. You. Hear. Me?

Sleep in, ie; sleep past 4am.

Not the other way around.

It will not make for very personable parents come, say, oh, about midday.

*Sob*

At 8am: Some of the kids (Ivy  included) have woken up with colds. Imogen will be staying home because she is too sick for school.

I realise that my quest to start the Christmas shopping is not going to happen.

It is cooler this morning and the sick children have begged off our daily morning walk, which I was kind of looking forward to but what is a girl to do? Break out the chocolate I say!

Ivy has a check up with the ENT doctor and I will begin my ‘negotiations’ to have her adenoids and her tonsils taken out.

Ivy finally has an appointment for the sleep clinic. It’s only taken ten months to secure.

The big kids have told me about three children in South Australia who are critically ill, two of whom are in a coma, because a highschooler gave them some ecstasy tablets and told them they were lollies.

I am very thankful that my children have had the knowledge of the devastation of drug use for as long as they can remember.

At 11pm (Don’t say anything - I know I should be in bed): Imogen is sleeping ok and I think her temp has broken. Ivy’s temp is going up and Noah is calling out in his sleep (asking for a book).

 Ivy is scheduled for adenoidectomy straight after the sleep study and if it shows that Ivy has apnoea, she will have a tonsillectomy too, although our friendly ENT doctor was quick to tell us that he felt she did not suffer from apnoea (yeah, like he has to sit up with her in the wee hours because her sleep is interrupted by gasping and hysterical crying) and there would be no need for tonsillectomy.

Can anyone say FIGJAM?

I now know that I hate predictive text on my mobile phone. When I tried to text David this afternoon, that… "Immy is sick" it predicted that I was trying to say…"Limbo is shmuck"

Is shmuck a word?

Ugh! The sunlight breaks through the window of their bedroom. Even though they have been extremely restless all night and kept the Mummy and the Daddy up until midnight,with smatterings of resettling thereafter, even though they are so tired their eyes can barely open a crack, once the sun is up so are they. This has gone on for days.

Someone please tell a higher power that we are more than ready for Daylight Savings in this house… Please!

 In the immortal words of Forrest Gump… "That’s all I have to say about that".

Why would you take one husband, five children and two toddlers to Toys R Us when you are severly sleep deprived? Honestly. Did you really think that you would have time to look for birthday presents for the soon to be two year olds? Follow the kids around, making mental notes on what they are interested in, for Christmas gifts? You were dreamin’ love!

For a start, didn’t you realise that releasing children into a toy store is like letting mice run free in the pantry? They scurry every which way looking for their favourite tidbits. You should know by now that taking them to a place like that is going to bring about the "can I’s"

Can I have this $60 doll? Can I have this $80 game boy game? You will make yourself hoarse saying no, by the time the husband calls it a day.(Which is about half an hour into the excursion).

Another thing, expecting toddlers to stay strapped into a stroller when there are toys, from floor to ceiling, is unrealistic… very unrealistic. Especially if you want to leave unscathed by the high pitched squeal, that your son has aquired, along with his almost two year old tantys.

Taking a money stressed husband to a place where you hope to spend money is not a good idea either. It just makes him fidgety, with crazy eyes darting from one end of the isle to the other, looking for the closest exit and you will be bitterly disappointed by the outcome of the outing. Remember that word. Bit - ter - ly.

When you do unbuckle the toddlers, be prepared to run…FAST. That, or be prepared to buy all the things they can break in the minute it takes you to hunt them down. Please know that the latter is not the best option unless you are flush with cash because two toddlers, working together, can break alot in a small space of time.

When you find your toddler son in a hot pink, battery operated, car, do not

a) laugh at him,

b) show him where the reverse button is or

c) chase him

because he will

a) think it’s a game and push the accelerator pedal down as far as it will go, thus allowing him to ‘drive’ full force down a crowded isle

b) hit the reverse button and drive over the cranky husband’s toes. Making him more cranky and

c) create a riot of other shoppers, laughing, at the spectacle of two parents chasing after their runaway child.

Also, it will get you in trouble with the sixteen year old, assistant manager, who has no idea what it is like raising children, doesn’t really want to know because it is Sunday and he would rather be out surfing with his mates but his Mum made him get this stupid job so that he could learn about responsibilities and good work ethic. He is already in a bad mood and you and your ragbag children just made his day!

When the money stressed husband says it’s time to go, just go. Don’t try to talk him around to spending money on Baby Einstein bowl and cup learning sets because they are on special this week. It won’t work.

When you have your own thirty -  five year old tanty and get your way it’s not a smart move to then ask him for something else, like a coffee because you are dead on your feet from chasing seven kids. He will laugh in your general direction and continue to make a fast exit to the car park.

Finally, when you go to the toy store with seven children, remember to take some ear plugs for when you are exiting the shopping centre. These will save you from having to listen to all the whinging about how unfair it was to take them to the toy store in the first place and then not get them anything. (Even though they got almost half a day playing in said store and a nice lunch, instead of having to clean up the yard).

Note to self: better just to stay at home and blog!

P.S. When walking to the carpark and cranky husband spies a model helicopter in a hobby store, encourage him to go in and make a selection. His curiosity will spark faster than a grass fire and his demeanor will rapidly change. Remember this the next time you want to spend money and take him to the hobby store first!

Sorry for that brief interlude. We just had a major reality check in having to take Noah to hospital, with Ivy riding on his shirt tails, with asthma. (Did I mention I love living in a place that is hot in the day and freezing at night?) Anyway, enough of that…

‘Everyday is better when you are on holidays’ : a slogan I saw often in sunny Queensland.

It was true, everything was better.

Even though the resort had not been eager to clean up the pool poo, even though the prices were high for everything, even though our rooms were small, compared to our house, everything seemed to take on a shiny glow of vacation beauty. Ahhhh, holidays, that ultimate escape from reality!

That first night we walked into Surfer’s Paradise, along the boardwalk, to the markets, had some dinner and milled around. Everyone was exhausted, so conversation was minimal. All except David, Ivy, Noah and I slept like logs but it was all good because, when you are on holidays, it doesn’t matter when your babies sleep on top of you all night and when you wake up and you can no longer feel your arm from the shoulder down because a large lumpy boy’s head has been there for hours, it’s easy to spring from your bed to face the new day. YAY!!!!

The kids wanted to go to the kids club, which suited the adults well because we had not planned anything much past getting across the boarder and into the resort. So off they went and we sat down in our room to discuss the days ahead. The babies didn’t like that idea much and started to ransack the room, calling housekeeping twice before we unplugged the phone and changing the time on the clock radios before they discovered the empty cupboard!

Oh, what fun two babies can make for themselves with an empty cupboard! Oh, the amount of coffee and conversation that you are able to have when babies discover said utility. Bliss on a stick…until one of the babies slams the other baby’s fingers in the sliding door… Oh, the howling that came from that baby, so loud, I’m sure they could hear us in reception, three floors below.

When all was calm again, Ivy and Noah rediscovered their ’sunnyglasses’ that Gran had bought for them the night before. For the next hour I had to put sunnies on, take sunnies off, admire child with sunnies on, take photos, play referee when Ivy decided that she liked Noah’s sunglasses better…in fact, wanted both pairs, one for her eyes and one set for on top of her head, like her big sisters’ wore them. It was okay though. It might be the same stuff, different day (or in this case place) because EVERYDAY is better when you are on holidays! (She says through a gritty smile).

After lunch, we went shopping. We would have been there sooner, except that David and I had a fight about who he should trust. Me or the Navigator (Navwench - the other woman in David’s life). Somewhere in the midst of our…heated discussion, we became seriously lost in Southport suburbia… he should have listened to the navigator, I’m sure I told him that! Never listen to a woman who has shopping on her mind, she just can’t think straight!

Okay, it was all my fault but don’t tell David that I admitted defeat, I’ll never live it down.

The whole shopping experience was not how I anticipated it. It was good, don’t get me wrong and I am sure if I were an eleven year old pre - pubescent girl looking for swimming costumes I would have been in heaven. We found some nice things and all the girls walked away happy, AJ had a haircut, David found new phone pouches and Navwench holders, so he was enjoying himself. It was just that I didn’t get a chance to do anything for me and so I was a bit miffed. The kids and David were happy though. My Mum was a little hot and tired but it was still okay.

I think we went back to the resort for a swim and dinner and an early night because the next day was going to be a big one…we were off to Seaworld for AJ’s 11th birthday!

In case you were worried about our sleep that night, Ivy and Noah slept very well, we had worn them out, finally.

At least, that is what he looked like at 4am this morning when he was in my bed trying to evict my eyeballs from their sockets. Blonde hair, blue eyes, a blue and white striped Bonds suit and the most devilish of grins, dimples included.

Why, oh why won’t my babies sleep through the night? When I took them home from the NICU the nurses commented on how lucky we were to have NICU trained babies. ‘They’re in a good routine’, they said, ‘they’ll just wake and feed, wake and feed’, another commented.

Look, don’t get me wrong, that is great when you bring them home, newborn from the hospital.When you are happy to baby gaze and you want to feed them every three hours, when you are floating on the pink fluffy clouds of euphoria. The trouble is, they can’t seem to break that routine and they are ALMOST two!!!! Two! Those pink, fluffy clouds are looking awfully grey and stormy, right about now.

For goodness sake, I am so sleep deprived! I can’t think straight anymore. Give me a break!(Please)

Here are some hints for Ivy and Noah (and any other babies out there who refuse to sleep through the night);

Do NOT come into my bed unless you want to snuggle down and sleep. If you want to seek and destroy, then do it in your own room. Mummies and Daddies need to sleep, otherwise they get cranky in the day. You, know, that time when you want them at their best, so they can dote upon you?

If you wake up very early in the morning, it will not put you in good stead to demand a ‘bockle’ (bottle) and then hit me in the face when it is not forth coming. No amount of hitting will get me or your father up in the freezing cold to get you a drink.

If you wake up in the middle of the night, do not get out of bed and wake up your brother or sister as well. We will be alot friendlier if there is only one baby to put back to sleep. Two wailing babies is just asking for trouble.

If you have to wake up can you please do it half an hour BEFORE we go to bed, not half an hour AFTER? If you haven’t guessed by now, when parents go to bed, they are exhausted and are asleep as soon as their heads hit the pillow. Half an hour in is serious REM time and you are interrupting the most restful part of the night.

Finally, if you do happen to wake several times during the night (and expect us to get out of bed to resettle you), when Mummy says it’s time for a day sleep, know that she means it. Know that you running around in overtired hyperactivity mode makes Mummy more tired. Mummy saying time for sleep is not an invitation for you to start up a conversation of babble with your sibling. It is not the time to do a poo in your clean nappy and it is not the time to chant some baby mantra at the top of your lungs. Sleep means sleep (and time out for your worn out caregiver…often a first opportunity to shower and have some nutrition for the day so that she has the energy to bend to your every whim).

P.S. Another little hint; even just one night of full sleep will do wonders for the Mummy and the Daddy. Take that into consideration when you go to bed tonight.