It's Beginning To Look A Lot Like Christmas

Time to dig out our secular Christmas songs playlist and put it on the iPod!

With one new addition this year: It's Beginning To Look A Lot Like Christmas by Bing Crosby.

Absence Seizures?

So, today the possibility of Beanie having absence seizures, a form of epilepsy, was brought up by his early intervention teacher. I'd never heard of these before. He has these little episodes where he just goes blank / switches off / shuts down. It happens frequently but more often during or after a meltdown where he's been crying hysterically. As his EI teacher said, it could be related to his possible ASD (referrals and paperwork have been put through for his assessment) or it could be seizures. We are waiting for a paed appointment through the hospital so this will be another thing to investigate when that comes through.

Huh. And now I'm remembering when Beanie was a wee babe and, on occasion, would do an odd, brief, trembling thing when he was feeding. I wonder if it's related?

Brave - Sara Bareilles

Awesome, inspiring, catchy song and music video.

1st Haircut

Loo has been asking for another haircut for months now so I finally got organised today and got the clippers out (gave him a #3 - should last him a while!). As usual, I asked the other 2 if they wanted a haircut too and, for the first time, Beanie said yes, he'd like a 'little' haircut. I did Loo first, giving Beanie a chance to change his mind but he didn't. I took about 20cm off his hair... it was down around his waist and now sits at the bottom of his shoulder blades.

Beanie did really well during his haircut but it wiped him out for the rest of the day. He spent the evening in total meltdown mode - screaming and crying over everything and nothing and unable to communicate, unable to eat his dinner. The OH had to lie down and hold him until he fell asleep. Poor Beanie was so exhausted, he still looked really pale and out of it as he slept. Hopefully he'll wake up feeling better tomorrow.

Tourism Film Shoot - Pioneer Park

We were asked to attend a film shoot for a tourism ad at a local camping ground today. The 15 second ad will eventually be shown on the Spirit of Tasmania and at tourism information centres.

 

Wings

The boys are supposed to be putting their toys away. Instead, I just saw Shmoo sit down with a couple of coat hangers and smear them liberally with glue. My first reaction was to feel a little cross with him because we often run out of coat hangers but I bit my tongue and casually asked him what he was doing.

He looked at me like I was stupid and slapped a sheet of paper on each of the hangers, saying, "Making wings, of course."

Of course.

Please don't let him be one of those kids who jumps off the roof and attempts to fly.

 

(He also has plans to get The OH to drill holes in a bicycle helmet so that an umbrella can be inserted to aid with his flying attempt...)

Homeschool Group - Kitchen Science

   

 

The homeschool group did some kitchen science experiments today... using red cabbage water as a pH indicator; making milk plastic; exploding snaplock bags, inflating balloons with bicarb and vinegar; popcorn lava lamps; and making sherbet.

I think the boys enjoyed the sherbet making the best! Shmoo and Loo were in one group and Beanie was in another. Beanie found it all a bit overwhelming so The OH had to do a lot of it for him but in the end he could be persuaded to help with holding and pouring (even if he did wash his hands a lot in between). I even managed to convince him touch his milk plastic.

 Every time we've been to Otto's Grotto lately we've come across big, black, hairy caterpillars congregating under the gum trees. I'd had a couple of quick looks online but hadn't been able to identify them. Until today, when I added 'gum tree' to my 'black caterpillar' search and came across a picture of steelblue sawfly larvae ('spitfire' grubs). They're not caterpillars at all but larvae of the sawfly (related to wasps). Fascinating little critters. Apparently when threatened they secrete a substance made from the oil of the eucalyptus leaves that they consume. And they communicate with each other by tapping their tails.

Full Circle

He was born at exactly 40 weeks gestation and today he is exactly 40 weeks old.

Look how far he's come...

  

Science Experiment - Cabbage Water

Making dinner tonight, I discovered half a red cabbage in the fridge (The OH bought it on the weekend and never got around to using it). I boiled up the outer leaves in several cups of water. When it was a nice, dark colour, I strained it and poured some of the now purple liquid into a glass. I gave the glass to the kids, along with some lemon wedges and a container each of bicarb soda and vinegar.

Loo was the most interested in it (the other 2 were a little distracted having their screen time). He was curious about the colour change to red when the acids were added and then to blue when he added the alkaline bicarb soda.

I'm starting to think that perhaps this explains our turquoise garlic incident last year.

It would have been fun to try using an egg like in this experiment but Loo's allergic to raw egg white. We still have a couple of cups of the cabbage water leftover so we might have to experiment with some other ingredients over the next few days!

Science Experiment - The Haunted Glove

Loo Bear was keen to try an experiment he'd read about in a library book...

A jar with a little water and vinegar in it. A glove, with bicarb soda in the fingers, secured to the rim of the jar with a rubber band.

  

Lift one finger to let the bicarb fall into the jar and... a spooky hand that rises up all by itself! Our rubber band wasn't particularly tight so a lot of the air escaped and the hand quickly deflated.

Take 2: We tightened up the rubber band and the hand stayed inflated for a good half hour.

And Tango Makes Three by Justin Richardson and Peter Parnell

Based on a true story. Roy and Silo, two male penguins at New York's Central Park Zoo, fall in love and are given an egg to rase: little Tango.

Such a beautiful book!

Nature Spotting - Pademelon

We were all very excited when The OH spotted a sweet little pademelon nibbling on the vegetation by our driveway the other evening.

Swimming

Baby Bear started swimming (water awareness) classes this term (the boys have had the same teacher for the last 7 or so years). B's very comfortable with submersions as I've done a lot of water play, splashing and 'ready, go's in the bath since he was tiny.

Avanti Apple Peeler, Corer and Slicer

 

We had another apple day recently except this time we used our new, pink Avanti apple peeling machine to peel, core and slice all the apples. It was really easy to use (and the suction base on it worked well - Shmoo didn't really need to hold it as he was in the photo - it didn't budge at all until I released the suction lever, despite some very enthusiastic handle turning by the boys). We had lots of fun and the apples were peeled a lot quicker this time.

Beanie turned the handle to peel the apples. Loo could put the apple on and turn the handle. Shmoo was able to do all of it by himself. And they all loved eating the super long strips of apple peel!

Science Experiments

 The big boys have been really into science for the last few months. They've been doing things like...

 

Bicarb soda and vingar experiments

'Singing' wine glass. This keeps Shmoo fascinated for hours - listening to how the pitch changes depending on the volume of water, listening for any changes when objects are added to the glass, watching the water vibrate.

This is Loo's pet paper bug... A paper towel with twisted corners placed over a lemon. The shape of the lemon means it skitters about in a similar way to a real bug. And I know in a few months I'm going to find a squashy, mouldy lemon in some dark corner of his room!

Heart Baby - Things I've Learned

Things I've learned from our surgery and hospital experiences with a young heart baby...

- It doesn't help to blame yourself.

- Be realistic. Neither pessimism or blind optimism helps.

- Read up, ask questions, be informed. But don't go overboard and don't diagnose with Dr. Google.

- Look up some photos of post-op heart babies in ICU. It's best to be prepared because it can be hugely overwhelming to walk into ICU and see your tiny bubba lying there so still, on a ventilator with lines and drains and wires all over them.

- Familiarise yourself with the medical jargon.

- Find out what support is available (eg. the Patient Transport Assistance Scheme). Usually the hospital will be able to give you info on what assistance is available to you.

- Get a display folder to keep paperwork in.

- Have a notebook that you can jot down questions and information. It's so easy to forget things!

- If at all possible, don't do it alone. It gets very overwhelming, especially if you have to travel away from home to an unfamiliar city. It would have been so much better if I'd had someone with me for all the appointments and hospital stays.

- It is possible to breastfeed a heart baby (maybe fully, maybe with EBM, maybe with a calorie supplement, maybe with formula supplements... depending on baby's condition). Get in contact with the Australian Breastfeeding Association or others who have been in similar circumstances.

- You may come across the odd doctor or paediatrician who's very anti-breastfeeding. Try not to let them get to you and find another doctor if possible. Listen to the doctors who are supportive. (I had lots of health professionals who were supportive. Once I knew B was okay I cancelled our appointments with the paed-who-thought-he-was-God).

- See a lactation consultant to make sure baby's feeding optimally.

- Poly-Joule mixes easier with fresh, warm expressed breastmilk. Then sit it in the fridge for at least an hour or so before use.

- Use your smartphone to set alarms for meds or buy a specific medicine alarm (some of them are really cheap).

- If you live outside the metropolitan area, check with your local pharmacy to see how long it will take to get baby's regular meds and supplements in.

- If you know something's not right or it seems like the docs have the wrong info, keep telling someone until you're listened to.

- Print out a map of the hospital if you're not already familiar with the place. Find out where the waiting areas, parenting rooms, and cafes are. Look into nearby accommodation (if you don't live nearby) as well as which shops, parks and transport are close by.

- Think about if you'll be staying in hospital with baby or elsewhere. Where will you stay while baby's post-op in ICU? (I could only room-in with B once he was transferred to the cardiac ward about 24 hours post-op. Many babes stay in ICU longer than that.)

- Find out what the hospital provides... nappies, dummies, meals, formula?

- Pack enough clothing so that you've still got clean stuff even when baby's puked all over you several times during the day and spat meds out, dripped blood from tests etc. Consider washing facilities and clothing drying times. It's not so much of an issue if you're close to home but don't under pack if you're travelling interstate!

- Keep in mind that the wards are usually quite warm (babies only wear nappies for several days post-op) so pack appropriate clothing for that as well as the outside weather.

- Pack tissues. There were some tough days when I really needed them!

- Leave a bit of luggage space so you've got room for paperwork and meds when you go home.

- If you usually put baby in sleeping or swaddle bags make sure the bags have a 2 way zip so that when baby is able to wear them post-op the monitoring wires can be hooked up through the bottom of the zipper. (Put baby into the sleeping bag before attaching the wires).

- Pack a few pens... they always seem to go missing in hospitals.

- It's a good idea to take some snacks and a bottle of water. Don't forget to take any meds or supplements of your own and consider food options if you have any particular dietary requirements. Pack your favourite toiletry items but it's not the best time to try new strongly scented products - baby will likely find comfort in your familiar scent post-op.

- Pack a couple of baby's favourite toys and anything that may be of comfort post-op. I had a particular playlist that I put on my phone, music that I'd been playing a lot for B in the weeks before. I also took his massage oil as I've given him regular massages since birth and he finds it soothing (in the first couple of days post-op, massaging was often the only thing that comforted him when he was so hungry but on fluid restrictions). It's also handy to pack baby nail clippers so they don't end up scratching themselves.

- I printed and laminated family photos to take as well as drawings by the other kids. Post-op, a photo of his brothers propped up in his hospital cot would cheer B up and amuse him for a while.

- Consider what you'll do while baby is in surgery. It's a very long wait and the hours drag by. Catch up with friends, go see a movie, or do some shopping if you feel up to it. If you'd prefer to stay at or close to the hospital, make sure you've got a book or laptop/smartphone to keep you occupied.

- Love my smartphone. Not only could I keep in contact with friends and family but I could also use it to surf the net, record info, play games, take photos, listen to music and read ebooks.

- If you are breastfeeding don't forget to express while baby is in surgery, at least as often as baby normally feeds. Talk to the post-op ward or ICU about storing EBM. It will take at least a day or two, maybe more before baby is allowed to (or interested in) breastfeed post-op so keep expressing regularly, especially overnight. B continued to have some EBM via a syringe for a while. Be prepared for baby to have some difficulty with feeding for a while, particularly while the drains and pacing wires are still in place (they can be uncomfortable for baby). Ask to see a lactation consultant if you're concerned about breastfeeding progress.

- Even if baby doesn't normally take one, a dummy may provide some much needed comfort in the early days after surgery, especially for a breastfed baby who isn't allowed unrestricted breastfeeds yet.

- Learn how the sats monitors, BP cuff etc are hooked up to baby and what the different monitors are for. (The nurses don't mind giving a run down on what they're doing each time they do obs and, in my experience, most give explanations without being asked). It's handy know the basic things so, if necessary, you can hook baby up yourself after a feed/cuddle/weigh as it can get pretty busy on the ward especially when another child has had a medical emergency and almost all the nurses are attending that.

- Try not to panic if one of baby's monitors goes off. If baby looks okay and a cavalcade of doctors and nurses doesn't suddenly fill the room, then chances are it's nothing serious.

- Every nurse has a different attitude towards obs. Some are really strict and will wake baby up to do them, some are very relaxed and will let you buzz them once baby's woken and do the obs then.

- Try and keep track of when baby's meds, obs or various procedures are due (ask the new nurse at each shift change as they'll have just been updated). You'll then be able to buzz your nurse before baby falls asleep. (Soooo many times B finally fell asleep only to have a nurse come by 10 minutes later for meds or obs!).

- Don't feel bad if you can't remember everyone's names.

- It's easier to find a vein for taking blood when baby's had a recent feed.

- If doing pre- and post-feed weighs and recording feed times and durations, do it yourself and then write the info down (even on a paper towel) and then leave it on the desk or tray table so the nurse can record the info next time they come by. Same for nappies if they're weighing them - record nappy change time and leave the bagged nappy next to the info. This way you don't have to buzz the nurse every time. It's also good for overnight - you can record the info and go straight back to sleep without having to wait to fill the nurse in on every little detail.

- Do as much for your baby as you feel comfortable doing but know when you need to step back. I couldn't bear to hold or be next to B while they catheterised him for nasal and urine samples - I was crying as much as he was!

- Ask for help when you need it. As a mum of 4, I've changed my fair share of nappies but changing a dirty nappy on a post-op baby who has tubes and lines all over him is something else altogether. It took maybe 2-3 days before I could do it solo. Also, I'm a fairly experienced breastfeeder but settling down to feed a post-op baby tangled in all the monitoring wires, lines and drains is tricky!

- It's okay to leave baby and go and grab a cuppa. It's also okay if you don't. Personally, I couldn't bring myself to be apart from B as I was on my own there with him with no one else who would be familiar to him. The nurses often seemed busy with babies whose parents weren't able to stay with them and I hated to think of B crying for extended periods if I wasn't there.

- If you don't want to leave baby, find out when baby is well enough to go off the ward and go for a short walk together.

- Make the most of the hospital volunteers. They'll keep an eye on baby while you have a cuppa, finish your meal or have a power nap.

- Nap when baby does during the day. Close the door and curtains overnight to help cut out some of the noise and light.

- It's totally normal to feel completely overwhelmed at times; maybe perfectly fine and coping one minute and falling apart the next. In hospital a day can feel like a week and circumstances can change quickly. Ask to speak to the social worker if you need to. Find someone who's happy to listen to you debrief, even a friend or family member over the phone (or even just write/type it all out)

- Sucrose (sugar water) may help to keep baby calmer during painful procedures. Ask if it's not offered.

- Immediately prior to having a heel prick done, firmly massage a very warm, wet cloth against baby's heel. This helps to get the blood flowing and hopefully not so much squeezing will be required (squeezing the heel may affect the results and leave baby sore and upset). If it seems to be difficult getting enough blood from a heel prick, ask if the ward doctor can take it via the back of baby's hand instead... sometimes it's just quicker and easier.

- For a few weeks post-op, the hiccups would make B cry. Coughing would make him cry. Sneezing would make him cry. Crying would make him cry. It all hurt his sternum. He hated Panadol so even the pain relief would make him cry.

- Baby won't be able to be picked up and held under the armpits for a good 6 weeks or so. Consider how you'll go travelling with baby if you have to fly home. It's definitely easier if you've got someone else to assist you.

- Consider post-op accommodation. We were told that the average hospital stay after an uncomplicated VSD surgery is 7-10 days. Despite a couple of little post-op bumps in the road to recovery, B was discharged on day 5. We had to stick around until a post-op check on day 8 but weren't allowed to fly until day 10. With the help of the hospital we were lucky enough to get a room at Ronald McDonald House.

- Meds are likely for at least a few weeks post-op.

- Scarring. Pre-surgery, looking at photos of little heart babies with a great big scar down their chest was enough to reduce me to tears. Post-surgery it doesn't seem so bad. Yes there's a big scar - which they say will grow with him but will also fade a lot in time - but I don't see it as something 'bad', as something 'wrong'. I see it representing his heart being healed, fixed. Plus his brothers seem to think it's pretty cool, and I'm sure B will think the same when he's older. That's his main scar. He also has half a dozen small scar 'spots' just below it from where the drains and pacing wires were stitched in place. He has another small scar on his neck where the central line was placed; and another couple of barely visible scars on his hands/feet from the peripheral lines.