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This is the messy job the cardiology technician did for Sheena's 24 hour Holter monitor test. Hard to get good help these days it seems. She did not have a blue episode during the test (as is the way these things go).

Holter Hazards

Sheena has her Holter Monitor on today. She has it descreetly hidden underneath these clothes, and I am not drawing any attention to it for now, so no photos of it directly. The technician fitting it annoyed me because:

1) He kept on calling Sheena a boy
2) He offered no advice on how to keep the thing on a 2 year old

He handed me a strap to sling over my shoulder to hold the device. As much as I love Sheena, I have no intention to staying within 1 meter of her for 24 hours. I said what about a belt, and he then presented a few adult size belts. We ended up wrapping an adult size belt around her twice. The cords are all messy, and I know they can done much neater, and even put in a box to keep them all together. This is why we usually go to The Children's rather than Monash, but her Cardiologist is based at Monash so its a bit tricky to negotiate.

Anyway we are managing well with the holter monitor, and Sheena still had one of her mammoth naps even though all she did today was walk in and out of the hospital. Of all days, when I want to minimize all clothes changes while Sheena has all the bits attached to her, she did the poo-wee sign to show she needed to do a poo. Not the day for a rushed trip to the potty. Definitely time to start potty training I think.

We're off to meet THE Wiggles

Sheena has been invited to meet The Wiggles. I am very excited, and know that Sheena won't be able to contain herself. Sarah from the Wiggles office called me today to confirm that Sheena (and us) can meet the guys before the show. We'll meet them in December, and we'll be sure to get lots of photos.

Parker has provided us some information on Pulmonary Hypertension. I like action, so waiting until Friday for Sheena to have a Holter Monitor test, then next Monday for her to meet the Respiratory and Sleep Specialist is very hard. I've got a small sty in my eye for the first time ever, no doubt due to stress from not knowing what we are in for.

Now that's a helmet

Hubby has a new motor bike, and of course Sheena has to get in on the fun.

Unfortunately, from a health perspective, Sheena has been rather complex for the past month. She's had a number of blue episodes, and they are now coming once or twice a day. She is also now sleeping 12-13 hours over night, as well as having a 3.5 - 4hr nap during the day. On top of this, her appetite is significantly reduced.

We purchased an oximeter from ebay, and her oxygen levels and HR are dropping significantly during these blue events. We visited her Paediatrician, and he ran some tests - including Thyroid, allergies and FBE, and they all came back normal. He also referred us to he cardiologist who we went to on Thursday. The echo showed she has Pulmonary Hypertension, which can be very serious if its primary, so we're hoping its secondary and due to some airway obstruction or sleep apnea. I'd rather it be nothing of course, because none of them are straight forward like taking a pill in the morning. She's now booked to have a 24 hours Holter monitor test next Friday which will check her heart beat overnight, and then due to see a respiratory and sleep specialist the following Monday. Ughhhhh - stress!!!

Howdy Partner

She now loves Dora the Explorer as much as The Wiggles. She's going to see the Wiggles live in December. I don't think she'll be able to contain herself.

She's still rather wary of Roy. I think she is scared of hurting him. We taught her to be gentle, but I don't think we overdid it. Three months down the track, she usually keeps a wide berth from him. We have to encourage her to give him a cuddle or hold his hand. Never mind, plenty of time for that.

Bonding with Baby

Sheena has been doing the actions to lots of songs to amuse Roy. He is suitably amused and smiles or chuckles along. Today it was the Little Green Frog, and Sheena makes the funniest Galoomp noise (you have to know the song for that to make any sense).

Sheena has been really sick for the past few days. Conjunctivitis started Saturday - eye cream from the GP. She had a blue episode on Sunday during breakfast, and had a swollen lip which the GP thinks may have been a severe reaction to the eye cream. Another visit to the GP and now on full-on antibiotics and eye-drops instead of the cream. We're anxious she'll pass it on to Roy, so I am washing away the day. No more blue-episodes, but it was very odd and scary. Here she is looking rather under the weather, but still keen to give Roy a laugh.

Body slamming

Sheena is the queen of rough-housing at the moment. She even tugs at her 70 year young Nan's hand to pull her down to go rough-housing all over the lounge room. Its the most exercise Nan has in a week.

School Days

Sheena has started a new developmental school. She is

2.8 years old, so now qualifies to enter the school system rather than just the early intervention centres. Its still basically an early intervention program, but its funded by the Education Department rather than the Department of Human Services, so it gets A LOT more Government funding, and can extend to 3 days a week, rather than 2 hours a week. We don't think Sheena needs 3 days a week, so for this year she is starting off with 1 day. The facilities are significantly better, with a gymnasium, a shaded outdoor playground with a good surface, and the children get regular 1-1 therapy as well as class activities. Its 1-7 children ratio, with 2 additional support staff in the room. We're quite excited about it, and Sheena did very well on her first day. She picked Banana's in Pyjamas for song time (not one we ever do at home), and the teacher described her as a 'mover'. Yes, we know...

Double up

Sheena is not 100% happy with the double pram. It isn't as comfy as the single buggy, but it serves the purpose for walks in the park, and hopefully for runs once I am completely recovered from the C-section - and once Roy gets a bit bigger.

Oversight

Always eager to make the next step forward, it is easy to overlook the huge progress Sheena has made this year. Here is a picture of Sheena showing off something she perfected since March this year - climbing and sitting on a chair (with mum and dad confident that she won't fall off!), and able to get back down again independently.

I am still weary of Sheena managing heights. Her lax joints means that she might want direct her leg 20cm, but her leg might accidentally fling 30cm, and over she would go.

Speaking of independence, Sheena will now insist on trying to read a book herself. Occasionally I am allowed to read it first, but then she'll want to take control. She is very determined to learn how to flick through all the pages herself without us helping by opening each page a little bit. Sheena is rather eager to develop the fine motor skills to manage this task.

The other thing Sheena is very keen to pick up is walking up and down stairs without using her hands to crawl up and down. She usually doesn't get frustrated with lack of success, and she'll just do something repeatedly before she perfects it, but if she has to sit down along the way trying this, it is definitely tears.

Spot the real baby

On her own accord Sheena has started to play with her dolly in a lovely creative way. She takes dolly to the change mat for nappy change, she puts dolly on the activity mat just like mum does with Roy, and she puts dolly in the swing, the seasaw, the toy pram, and as you can see likes to give dolly a dummy.

In the short term

Its the first week of the school term, which means planning sessions to discuss goals with Sheena's EI teachers for the next 6 months.

As we're in the terrible two stage, some of the goals are behavioural, typical stuff like holding hands when walking down the street, and not standing on the couch, and not sitting on the coffee table. Developmentally, our major goal is still with the spoon feeding. Unfortunately Sheena did not make much progress with that skill over the past six months. Also, at the moment, Sheena has a very short attention span to attend to an activity, so we're going to try to encourage her to have one more go, before she moves onto the next thing.

Sheena's secreterial skills

Let me quickly type this important memo

I need to use the mouse for this bit.

I think I'll stand up to finish this draft.

Time to review on the couch

Just a minor change, and I am happy to send off.

Getting to know baby Bro

Sheena is rather nervous around her baby brother at the moment. She tries to avoid cuddling him, but at the same time is curious at a distance. This photo took some effort, as Sheena would jump off the couch rather than sit and pose next to Roy. At the same time, Sheena can say Roy very well, "Roy oy oy", which she says whenever he cries, or sees him - or even his bassinet.

Roy is already addicted to his dummy thanks to his time in hospital. Pretty much every baby on the ward had one. He now has a blog of his own - www.roydeclan.blogspot.com. He is doing better - thanks to everyone for your best wishes. He has avoided surgery so far with lots of drugs on the go to maintain him. We see the cardiologist next week to see how he's progressing.

Our Walk

Sheena's walking is considerably less stiff and she is getting more adventurous with her travels. Sheena started toddling 6 months ago when she turned 2, and now the toddle has gone. She still needs more practice with going up and down hills, but she manages rough terrain if the surface is fairly flat. Yesterday she went to investigate a barking dog at a neighbours house, and then got rather interesting in a pile of fire wood.

Very Serious - but not for long

Sheena was looking rather serious here until the camera came out. She has taken to enjoying art - hence looking rather pleadingly at her table. Thankfully they do a lot of painting at childcare and playgroup, because I can't be bothered with tidying up paint at the moment. I am quite happy for crayons, but not the whole smock and paints process while we get through the newborn stage with Roy.

Sheena is being a great big sister. Only one time of very obvious jealousy when she didn't want to be put down when Roy needed a feed. That is fair enough.

Roy is gaining weight. 80gm over the weekend, when they were hoping for 90gm. Close enough when you think about the amount that goes in and out at his age. He seems so much stronger, and is filling out. The nurse that comes out is an Enhanced Maternal Health Nurse - i.e. home visits, and more frequent visits than usual after a baby is born. We've been spoilt with services since Roy had all his heart problems. She recommended that we get our immunisations at the Hospital Clinic rather than through the local council, as heart-kids can be effected by them more so. A bit scary! The first lot are only three weeks away.

Busy gaining weight to avoid heart surgery

This blog is more about Sheena's baby brother who is now three weeks old - but he has been the big deal of late.

He is out of hospital, with a strict regime to gain weight over the next month, in the hope that he will grow, but the holes in his heart won't, thus reducing the symptoms.

He is on lasix (diuretics), and captopril (to reduce this blood pressure), and polyjoule (a syrup to be given after each breastfeed which is very high in calories). He gets weighed 2 times a week by a nurse that comes to our house. We have to keep him away from anyone with a virus, and basically reduce anything that is going to make him work too hard. We have to keep him especially rugged up, and avoid big changes in temperature as much as possible to avoid him wasting energy trying to keep warm.
The final decision after 4 echo's was that Roy has Swiss cheese VSD's, or multiple vsd's ranging in size from 3.5mm to 1mm. Each hole on its own is considered small, but because he has several it caused the heart failure. The doctors are hoping, that by waiting one month the holes will spontaneously close or significantly reduce. There is a strong case for this because:
1. The holes are relatively small and if they were in isolation they would probably not have caused him any bother.
2. They're in the more muscular part of the wall which apparently means they can close more readily
3. Being in the muscular part of the wall, surgery would be very difficult at this point, as its hard to locate them through the various muscle fibres.
4. The only surgery they could do now is to put a band on the pulmonary artery, so it is not a complete solution, but would stop the heart failure problems.

Here is Roy's journey from hospital to home again. He was in for 13 days.


1. Initial few days in the high dependency room on the cardiac ward. Plugged into lots of monitors.
2. A precious wee cuddle with dad before going back under the lamps to get rid of the jaundice.
3. Back under the lamps again, but with less tape on his face as the oxygen prongs are no longer needed.

4. Off most of the monitors, still looking rather sick though.
5. Two days before discharge. Still have nasal gastric tube, and still alternating BF with NG feeds.
6. Back home again, feeling free and happy.

Sheena and Roy - 2 weeks in.

I have been spending pretty much all of my time in hospital with Roy for the past 9 days. The day goes really fast with all the other stuff that goes on, so anyone that has phoned or emailed, I apologise if I am really slack at getting back for now. Phones aren't allowed on the ward which makes it difficult.

Sheena Update:

Yesterday I had my first visit home for about 8 hours, and had a proper play with Sheena. Of course I've seen her here and there, but its usually only been a brief hour while hubby comes to visit, and it just awkward entertaining a 2 year old in hospital. We're never taken her up to the cardiac ward as we don't think its the place for her, but there is a play room and outdoor playground to keep her entertained.

So our afternoon and dinner was great fun with Sheena. Sheena was in great form, and her "conversations" are getting much better. She will now go, "blah, blahh, day, da, ba, ma nann nann" as though she's trying to tell me something very important but can't find the words to make any sense of it. Thank goodness for sign language to fill in the gaps. There is a lot more inflection in her voice making it quite different to normal babbling. Very sweet. She is also getting much stronger - particularly her legs. Everyone that sees her regularly has noticed the change in that.

She is handling being with her dad 80% of the time, and with her Nan and Pop the remaining time very well. She's used to spending most of the time with me, but the fact that she's coping so well makes it easier on everyone. She is off her food much more than usual, but I am told by my girlfriends that this is not unusual for a 2 year old anyone.

Roy Update:

Roy is nice and stable, and his work of breath is more under control now. He still is working more than he should, but its much improved. He still gets poked daily for bloods, but is down to just an nasal gastric tube, and is now fully dressed, and much easier to cuddle than when he was in the heated cot while they watched his chest, and had an ecg going all the time. We've been moved from the high dependency room to the regular room on the ward, so its a bit quieter, with less beeps going off all day and night.

His diet is closely monitored, and he alternates BF's and NG gravity feeds. Each BF involves a weigh in before hand, and then after, so that they can calculate exactly how much he is taking in, and if isn't exactly 100mls, they top him up with some EBM so they can ensure he's getting the planned amount set out by the dietitian. It is all rather medicalised, but its important, as they need to track if he's gaining calories or if is fluid retention which the diuretics should be controlling anyway.

The plan for Roy at this point is to have surgery next week. We don't know when but the surgeons meet on Monday to schedule the week based on each child's case. Roy is a priority case given his age, and that he's still in hospital. His obs are stable, however, so even if we're told its Wed for example, it could easily be put off if a more urgent case comes up in the meantime.

Thanks everyone for your interest and best wishes.

Big Sister Sheena

Sheena is now the proud big sister of Roy. Roy arrived via C-section weighing 4kgs - 500gm bigger than Sheena was.

Unfortunately Roy has only spent 2 days at home with Sheena despite being 13 days old already. They detected a heart murmur, which he was coping with fine while at the maternity hospital, and was discharged with a plan to follow up in the next few weeks as an outpatient, expecting that the holes would spontaneously close (as was the case with Sheena). However after 2 days home from hospital, Roy went into heart failure, and he's been in hospital since. It looks like surgery is the path we're on at the moment. There is still a chance that they'll send him home first beforehand, but his work of breath is still really labored, so he is staying put at the moment.

Sheena is being a bit naughty at home with Dad at the moment, but that is to be expected given she's 2 and testing the boundaries without mum around to say No. I have been in hospital with Roy, so I am missing Sheena a lot, but see her every second day for an hour or so. Cardiac wards are not good play areas for 2 year olds, so its hard to do much more than that at the moment.

Heading Out

Sheena has started to be very helpful when its time to leave the house. She now gets her own jacket and shoes from the cupboard.

Sheena had another shocking EI playgroup last week, but I persisted through her tears of protest, and just wanting to be cuddled. I think she is resisting being made to 'work' with all the therapists. If it was free-play she'd prefer it much more, but unfortunately that is not the point of it all. One of my mothers groups was in the same centre later in the week, and she was fine after 5 minutes of wanting cuddles, and being unsure. As soon as she was satisfied that there was no pressure to 'perform', she was happy and played and socialised nicely with everyone.