Tag Archives: medical appointments

I Can Feel It Coming In The Air

 When I don’t wake up this morning (Pal gets up with the children while I sleep in on Fridays), I already notice that it is another miserable day.  I have a feeling of impending gloom. I knew the weather wasn’t going to be nice, but I am still disappointed.

When I do finally wake up this morning, I realise it isn’t as miserable as I thought it might be but I will still be housebound with three bored, stir crazy children.  And one bored husband.  I’m not sure which I’d rather – stabbing myself in the eye could actually win in a choice between the two scenarios.

Obviously sensing my dismay at the scene in front of me, Oscar decides we need a bit of excitement and promptly channels his inner sick kid.  I put him to bed for a sleep, thinking it might be better if he wasn’t scrag tired exhausted.  When he wakes, his lips, arms and hands are blue and he sounds like a wounded seal. Nice.  Puffed up with Ventolin like a hot air balloon, Oscar improves.  Miracle of all miracles, there is a doctors appointment this afternoon.  Better to be safe than sorry.

We get to the doctor’s surgery, Oscar far from sleepily wrapped in the Sleepy Wrap, but warm nevertheless. It’s only a short wait.  I only sing Five Little Ducks seven times, which is probably some kind of record.

P.S. Old Mother Duck seriously needs to pull her socks up! She loses ALL FIVE KIDS, people.  All five.  Over the hill and FAR AWAY. Only when they have all gone does she bother going looking.

So Mother Duck finds all her kids for the seventh time (obviously there is something really interesting over the hill and far away to keep those ducks running away), and the doctor appears calling Oscar’s name.  Oscar quacks in response and I feel it’s appropriate because the doctor is wearing green, blue and brown plaid pants.  

Dr mentions that Oscar has had a complicated year.  I feel this is an understatement.  And laugh.  Doctor looks at me as though I may be taking my son’s health as a joke.  I immediately put on my Worried Mother face and resume explaining the seal sound.  Doctor is not particularly impressed by my impression.  Reads some more notes.  Checks ears, listens to chest and heart.  No apparent infection – could he twist my arm into giving Oscar antibiotics to clear green snot and head off any other infection that he can’t see?  Better to be safe than sorry and all that.  Yes. Consider my arm twisted.  Good, let’s weigh the boy to be thorough.

9kg.  1kg gain in a month.  Seems to be fattening up well, then.

Right, follow the wheeze plan. It’s working.  The minute you are concerned again come back.  Any questions?

Yes.  Actually.  I’ve been feeling overwhelmed.

I explain how I feel that something is always waiting to go wrong, and that today in particular, but the past few days, I have had the feeling of impending gloom.

Not surprised with the winter you’ve had.  The past year you’ve had.  Am surprised you and husband are both still sane.  Feel the same in a week or two come back and we’ll talk some more.

I hitch Joey back into my Pouch and head off to the chemist for some antibiotics.  We meet Pal and the other children in the street and the feeling of gloom is increased by the spitting of the rain.  The chemist smiles at me, we are friends now.  OK for Panadol? Yes, well stocked thanks.

Get back to the car, feeling like the gloom is going to eat me up.  Starting to feel nauseous, I tell Paul it’s probably time to go home and eat something.  He hasn’t had lunch either.

“Get eat, Mumma?” from the backseat.

Stuff it.  Go through Maccas drive thru.

We sit by the park, watching the water feature that looks more like sprinklers misdirected into the weir instead of onto the grass.  Eating more calories in ten minutes than I did all of yesterday.  And I begin to feel less nauseous, if a little more greasy.

And it’s then that I realise.  It’s not gloom I’ve been feeling coming in the air.

It’s PMS.

Week 2

The 52 Week Project
Linking up with Fiona at My Mummy Daze for the 52 Week Project.  Click the button and it will take you there!

The Waft of Rotten Parmesan Cheese…

We’re home safe and sound from Oscar’s paediatrian appointment in Wagga today. The little man is healthy and safe. His heart remains in check and his breathing was stellar! We’ve got a plan should it ever deteriorate again and we’re feeling confident that as the weather gets warmer his chest and nasal passages will get clearer and clearer.

We managed to avoid any parking fines this time round. Though Pal was tempted to park in a one hour park for obviously more than an hour. Having learnt half his lesson he switched to a 3 hour car park upon my not so gentle suggestion.

We ate, we shopped (oh KMart, I heart you), we walked (oh blisters, I unheart you) and we battled an overtired toddler determined to tell the world she was unhappy with her lot today. Although she practically ate the entire garlic bread loaf at La Porchetta on her own. She can’t have been too unhappy!

We also caught up with my Big Brother, my Sweet Sister-in-law and their four beautifully gorgeous, totally mental, but absolutely divine, four children. We had a great afternoon and as always were plenty sad to be leaving.

Oscar was obviously having a fabulous time and reluctant to leave. Nothing says: “No, Mun, let’s stay a little longer” than spewing right down your mother’s top. Three times (thanks Sweet SIL for the costume changes!) It’s ok though, he made it up to me by continuing to vomit in the car. Projectile. Noice. I also have an entire load of washing just from today. And that’s not counting the car seat. That’s one way to get Pal to clean the car out I suppose!

I’m off to bed. I’ve got sore feet, sore eyes, and dry skin after one of the hottest showers I’ve ever taken. I can still smell that rotten Parmesan cheese though…

Fighter

I keep trying to write about the past week and it gets so long and so jumbled up that I don’t think it is ever going to come out right. So to help my words spew forth, I am linking up with Maxabella Loves for Grateful Saturday.

I am just grateful.  I am grateful that my son is home, safe, and well enough.

I am grateful that in a hospital that gets particularly bad press – and that I actually requested NOT to be sent to – we received stellar care.

I am grateful for the paediatrician who recognised Oscar’s best interests and fought for them.  Working long hard hours, insisting on extra staff and monitoring in an understaffed ward, to avoid a transfer that would be to the detriment of Oscar’s health, simply because there are not enough staff to cover one on one (and eventually one on two) monitoring.

I am grateful for the paediatric registrars who worked long, hard hours away from their own families, for the sake of my boy.  BJ was away from HIS wife and HIS twins for the sake of my boy.  He was in trouble when he got home, as he said: “Two babies, it is too many babies for one person on their own.” But he also assured me when I hoped that it wasn’t too bad a ribbing (knowing how I would have been if it were Pal!): “It is OK, I am well ventilated.  In one ear and out the other.”

I am grateful for the nurse who came back in after she had already finished her shift, gone home, changed into her pink flanny pajamas and fallen asleep on the couch.  And then backed it up the next day with two twelve hour shifts to watch over my boy and another sick baby carefully and considerately.

I am thankful for answered questions.  I was never left in the dark.

I am grateful for the two nurses that absolutely insisted that the doctors come and look at my boy immediately.  Who counted my sons respiratory rate over and over and over again, sure that they were counting wrong.  Because 80 breaths per minute seemed ludicrous when the average is 20-40.

I am grateful for CPAP machines, xrays and computerized medical notes.

I am grateful to other understanding mothers, who know that when a child can be heard crying, there is little a mother can do to ease their child’s pain but cuddle and sing and wander the halls (if there are no monitors or cords or IVs or oxygen hook ups).  At fellow inmates of the pediatric ward who sleep through my crying child just as he will sleep through them, thank you.  I am grateful for a little girl, Oscar’s age, insisting on entering the nursery to give Oscar a toy.  I am grateful for Baby John’s mother, who heard me singing lullabies to Oscar so many times she gifted us a CD of lullabies to listen to when we got home, to give my voice a rest. (I’m wondering if she just got really sick of “Hush Little Baby” and thought this would be a subtle hint to SHUT UP ALREADY!)

I am grateful to the two nurses who bore the brunt of Oscar’s frightened behaviour.  Bottles and toys thrown, twisting, kicking, scratching, screaming.  They recognised he had been traumatised with 12 cannula attempts in Young, 1 antibiotic injection in his thigh, 2 more cannula attempts in Wagga and god knows how many other times he had to be held down for examination and ventolin administration.  And that was only within the first 12 hours.  I am so grateful that on our departure, they were the two nurses Oscar had the biggest smiles, laughs and songs for, and who had the most air kisses for him.

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The safe zone from our point of view.  If the steel stand line was breached, all hell broke loose.

I am grateful to the nurse who broke the rules.  When instructed not to give Oscar any milk orally, and with us both at our wits end with my hungry hollow legged man at 3am, she gave him all of 25mls in a bottle.  Which he had consumed before she’d even managed to let go of the bottle.  And that he promptly threw back at her and hit her in the head.  I am grateful because although it didn’t curb his hunger, it showed the doctors that he could tolerate oral fluids.  I don’t think a hungry baby is likely to recover as quickly as a fully fed calm baby.

I am grateful for all of the support we received while we were away.  Traci from Precious Hearts sent us a care package.  Messages and phone calls of love and support poured in.  My mother dropped everything to come and look after the children so Pal and I could both be with Oscar.  It might seem prudent for at least one of us to stay with Rory and Fraser, but the overly dramatic truth and sentiment is that with Oscar, we never really are sure how serious things can get.  We need to be with him.  I wouldn’t leave him in that situation and I wouldn’t expect Pal to be apart from him either.

We were transferred to Wagga on Thursday afternoon/night, Pal visited with the other children on Friday, to check on us, and eventually we made the decision that he would bring the children home to have a night with his mother, and then be cared for by mine in their own home.  I am so grateful that we chose this path.  With Pal on Saturday afternoon, when the world turned pear-shaped and began to melt like a Dali painting, I had him to hold my hand, help me speak to doctors and to ask the questions that I had not yet asked.  And to send me for a sleep for the first time in 3 days.

I am grateful to Ronald McDonald house, who made Pal and I feel very much at home and comfortable on our “nights off”.  We alternated nights at the hospital after Pal arrived, and I am once again glad that although I wanted to be there, and be the best mum I could be, I knew that I was no use to anyone dead on my feet.

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I don’t usually like to post pictures of Oscar all connected, but this was too good to not!

I am grateful that winter is nearly over, and all the ex-prems, heart kids and asthma kids will hopefully get a break over the warmer months, and have a year to grow bigger, stronger and healthier and hopefully avoid a hospital stay next cold and flu season.

Mostly though, I am grateful for Oscar.  So many times he has fought so hard.  He will probably have to fight again. But he fights well. He fights strong.  Sometimes he even fights dirty.  But by God, does he fight.

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Unhooked and hungry.  That chicken nugget got what it deserved.

 

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Escape

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Normal is the New Advanced

Flogging this blog with Where’s My Glow. Click the link and check out her post today.  Too funny!

FYBF
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When I first met Rory, a minute after she was born, I was pretty confident that she had hung the moon. And the stars. Probably the sun and the clouds as well. This perfect being was my world. She was, so to speak, the bees knees in my eyes. She could do no wrong. My Bestie Amelia calls this “The Shine”.

As she grew older, the Shine continued to stay polished. She could still do no wrong. I still loved her to bits. In my eyes, she was the best baby ever.

I was consistently told that she was a bright, happy, beautiful, normal baby. Whenever someone said “normal” I wanted to point out that Roo was not just normal. She was particularly fantastic and “normal” was an insult, so special, precious and fantastic was my child.

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See, precious!

By 3 months old, we had started Mother’s Group. I quickly found out that not only did every mother believe that their baby was the best baby ever, some mothers thought that their baby was the best baby ever AND better than my baby.

I had been introduced to the fickle, petty and downright nasty world of baby competition.

Roo was 2 months older than the baby closest to her age, and up to 4 months older than the others. We’d had a rough start with her being born out of town, and my trips back to the OASIS clinic (and yes, OASIS sounds nice, but actually stands for Obstetric Anal Sphincter InjurieS – Roo tore me not one, but two, new ones. And yet she still retained her Shine).

Being that little bit older, mothers began to set the benchmark for their own child’s behaviour at “what Rory was doing at that age”. Sweet, lovely, great to be asked all those questions and be treated like a celebrity expert needed friend.

It wasn’t long, though, before the 2-4 month age gap meant less and less. Other babies began to catch Roo up in the development stakes. They crawled before she did. The climbed before she did. They spoke before she did. All of a sudden, it wasn’t enough that Roo was normal, happy, bright, social and could do the actions to “If You’re Happy and You Know It (clap your hands)”.
Other mothers began to compare their children to my bonnie babe and all of a sudden I noticed a shift in their speech patterns and questions.

It was no longer: “When did Rory start rolling?” It was: “Isn’t Rory standing, yet?” Like my child was developmentally delayed (that dirty word!).

All of a sudden I heard whispers around the group: I was holding Roo back by continuing to breast feed her (she was the only baby in our little group still breastfeeding at 9 months).
I was holding her back by using our Baba sling rather than letting her crawl around on the ground, or sit in her pram (for the record, I had both a pram and a carrier, and the carrier got much more of a workout until Roo was about 11 months old).
I mustn’t be reading to her enough.
 I was giving her too many arrowroot biscuits (“No WAY would I pump my child full with BISCUITS” said the mother slyly to another as I was in that moment pumping my 9 month old child full of biscuits. She said this while passing her 7 month old straight fruit juice, mind you).

All of a sudden, Roo began to be referred to by other mothers as “perfectly normal” as if normal was a dirty word. Because their children were obviously trouncing Roo in the development stakes, so she must be “normal” because their children were obviously highly advanced in order to leap ahead of a baby 2-4 months older than theirs.

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Rory being normal…

I began to despise hearing the word “normal” said in such a way that it meant “delayed”. Normal became the new swear word in our house. I began to get competitive. I began trying to get Roo to “do stuff” because I thought maybe they were right. Maybe they WERE giving their child more attention (how can you give a child more attention that 100% of it, I don’t know, but I was convinced I was a bad mother). I found out I was pregnant with the twins and began to suffer migraines and fatigue that could fell a Spartan. I felt like the world’s worst mother for having a “normal” child.

How little I knew. How naive I was. How wrong my priorities were.

Yesterday, when the physio and the pediatrician and the NICU nurse and the medical students all lauded Oscar as “normal” my heart leaped into my throat and I did an internal happy dance (and possibly an external happy clap. Yes, I am a happy clapper. What of it?)

When my boys were born small, at 34 weeks, my life changed from worrying about other mothers to just hoping desperately that my children would be let out of hospital by their due date. When I changed my hopes from leaving hospital at the due date to just hoping Oscar would survive his heart surgery. When I changed my hopes from Oscar surviving surgery to recovering fully enough to not need another surgery. When I changed my hopes to just being able to be at home longer than two weeks without having to travel anywhere between 2-6 hours for a medical appointment. So many times my life, dreams, hopes and priorities have changed over the last 12 months.

Someone suggested that perhaps I have had to “lower my standards and my expectations”.  I don’t think so.  I think I have had to reassess reality.

At his 8 month corrected NICU follow up and developmental check, Oscar was assessed and pegged as being about one month behind the 8-ball.  After three surgeries, low birth weight, low weight gains that I was told consistently would seriously affect his development; after all of that, he was only one month behind. I couldn’t have asked for better news.

At his 12 month check on Wednesday, we sat with two physiotherapists, one pediatrician, two medical students and a NICU nurse that cared for both my boys when they were born. They played with Oscar. Took his toys away. Showed him his own beautiful reflection. They checked his eyes, asked us questions about his speech, asked him to copy their sounds. They made him stand against a table, sit, roll and crawl. They walked him along the ground to check his feet. They encouraged him to hold his hands flat against a table. They asked him to swap a toy from hand to hand and then follow it (with eyes and body if he wished) as they moved it around the room. They weighed him. They checked his height, his weight and his head circumference. They listened to his heart (“No use listening in, there’s no murmur” said the pediatrician almost dejectedly to his medical students. I think they thought they were going to get a good teaching/learning opportunity out of my “heart” baby). And they did everything they could to make him smile, laugh and chatter. Oscar willingly obliged after checking for reassurance from Pal, Fraser and myself. Often he would search me out and tell me with his eyes: “Can you believe how ridiculous these people are Mum? You’d think they’d never met a baby before!”

And after all of this, they spoke to me about expectations and some kind of scale. And how Oscar was a 7. I desperately hoped assumed they meant 7 out of 10. They did.

“A score between 6 and 9 is normal. And he is a 7. He is perfectly normal. We don’t even need to do a full scale Bayley’s Assessment (a much more in depth developmental assessment).”

And so I am pretty confident that Oscar has hung the moon. And the stars. Probably the sun and the clouds as well.

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Chontelle Perrin Photography

You see, after your child has been through 12 months of medical rig morale; once you have watched your child be administered medicine that stops him breathing so they can keep his heart pumping; once you see your 1.5kg baby pale and listless, sedated in the NICU surrounded by what seems to be hundreds of wires; once you have held your small, usually cheerful, baby as he cries as they hold an anesthetic mask over his face; once you just want him alive, healthy, able to play with his brother like a normal baby? After that, your attitude towards “just normal” changes.

Perfectly normal is practically advanced in this house.

Oh, for the record: The only way your child can be officially “advanced” is to get a score of 10. Out of 10. And you probably won’t get a “score” or assessment like this unless there’s been a problem. I mean, Oscar had to be born at 1.48kg and 34 weeks in order to get a you-beaut, sh-mick appointment at the NICU follow-up. Fraser didn’t even make the cut. So here’s the deal:

Unless your baby has been assessed, and got a perfect 10, then he or she is probably “just” normal. Comparing your child to another is useless. Because 6 is a normal, as is a 9. They’re all normal.

And you know what?

That’s awesome.

Perfectly normal is perfectly FAN-FUCKING-TASTIC.