The 1st Tooth has arrived

And it arrived without much fanfare, but its causing him a lot of bother now as it continues to cut through.

Roy's 1st Christmas

Roy had a lovely 1st Christmas. He didn't go lacking in the present department, and he immediately made good use of the wrapping paper. Quite exhausting work, and it was sleep time during Christmas lunch.

Tum-tum time

Roy had a great floor play session today - video. He was never a fan of tummy time when he was little with his reflux and colic. His heart condition certainly didn't help either. Heart kids can be slow to push their chest up, but Roy has got the hang of it now. He couldn't decide if he wanted to 'swim' or 'talk', or both.

He is 6 months now, so I am being more persistent with offering solids. He had cereal for breaky and broccoli mash for dinner. Its coming along slowky but surely.

So far so good.

So its just over a week since the Neurosurgeon appointment and Roy's HC isn't continuing to grow too fast, which is promising.

Roy had a busy day. A walk in the pram first thing, then a playdate in the morning, and then off to an appointment for his sister in the afternoon. He'll enjoy a quiet day tomorrow after all that.

He hasn't got into his solids yet. Not in the slightest bit interested in banana this morning.

Big Baby

Roy had a go at sitting up, but would flop forward or sidewides more than backwards. He is now 8.4kg. More than double his birthweight.

Close call

In trouble from the relatives in Canada for not posting recently. Sorry!

Roy has been giving us some serious health scares. His head circumference went up a percentile so he had a cranial ultrasound. Getting any information from the sonographer is usually like pulling teeth, but he casually said, "his ventricles are on the large side - that is usually where they hold fluid". My heart sank. I quizzed him on protocol on the results process, and I was on the phone to the Paediatrician the first thing the following morning. He got back to me mid-morning and said that they were mildly to moderately enlarged, and that he would arrange for us to see the Neurosurgeon on Monday for a consult. It was Friday. That is remarkably quick, which had me relieved, but at the same time very worried that it was serious. I didn't sleep all weekend, and was really worried.

We saw the Neurosurgeon yesterday. I was really anxious. She said he doesn't have pressure, but that we have to keep a close eye on him for the signs like sunset eyes, vomiting, irritability, and a bulging fontanelle. We have to measure his HC weekly, and see the Neurosurgeon again in one months time. She thinks he is just going to have a large head - its 98th percentile, which means that only 2% of boys his age have a bigger head. Hopefully it won't have any implications. She thinks the plump ventricles might be thanks to his heart failure when he was little. He is having another assessment by the cardiologist next month, and it will be interesting to see what is going on there. Roy's HC started to creep up when he went off his Lasix heart meds that takes fluid off. The Nueuro thinks there might be a direct relationship. Maybe he'll be put back on lasix and that will be the end of it. Sure beats shunt surgergy. Fingers crossed everyone please.

Rollerramma Roy

Roy is off. Only yesterday he worked out how to consistently roll from his back to his tummy, now today he's done a 90 degree turn, then rolled back to tummy, then tummy to back and off the lounge room carpet straight towards the toys. He often still gets caught in tummy time, and then gets frustrated, but I think our little roller is very clever. Here he is with his big sister cheering him on.

Soft toy smiles

Roy loves to have chats these days. It is a matter of talk to him and he will smile and laugh. I am going to the council's talk on introducing solids today. It was only 2 years ago that I had to do the same with his big sister, but I think I need a refresher. Roy is now 7.38kgs. He is tracking on the 50th percentile for weight.

A changed little man

Roy met his Aunty and his cousin for the first time last week. He liked the extra attention, but not half as much as he now likes his bottles and solids. Well, actually he is quite indifferent on the solids still, but he takes a couple of teaspoons once or twice a day. His Pop is visiting relatives in Canada, and its the norm to start at 4 months there, but here they still usually suggest closer to 6 months. At least by starting early, Roy has more time to get in the swing of it. It is helping his reflux a lot. The spit-ups have reduced enormously.

Bottles for Baby Boy

A lot has happened to our little lad since we last updated Roy Time.

He's moved to bottle feeding, and we're doing 2 expressed breast milk feeds a day and the rest is formula. He is doing better on the bottle, and is much more satisfied rather than struggling through breast feeds with his reflux.

We visited his Paediatrician today, and he's doing fine. The Pead thinks I should put him on solids to help his reflux, because he still spits up his feeds more than you'd like. I've bought the rice cereal, so that is on the cards for the next week.

Best news is that his ticker is almost 100%. He's still got a minor murmur, but nothing like when he was born.

Early mornings

Summer is on its way, so Roy and I have been going for early morning walks. Gets exercise over and done with which is good, because his sister has been having mammoth naps in the afternoon - ruling out that time to get out.

Roy still has reflux problems which I plan to tackle again. I spoke to a friend who had 3 kids with reflux so I've learnt a few tips.

Roy is sleeping through, but is waking up at 5.30am. I am getting a nap in in the afternoon while they are both asleep.

7 o'clock lights out

Roy has been copying Sheena's bedtime for the past couple of nights. I like my child-free evenings, so that is much appreciated. He had a baby-sitter this morning, and managed OK with it. Went out for a kid-free bike ride. My first since December last year due to the pregnancy. It was pouring with rain, but I loved it regardless.

Roy had a delightful day.

Bean bag babe

Roy is great fun at the moment. He's busy working out what his hands do, and is now more tolerant of tummy- time. He thinks beep-beep against his is nose is hilarious.

Rocking Roy

Roy's had a very settled week since his reflux has got under control. He is now (mostly) a delight. He is inclined to cry before he goes to sleep, but it is a bareable cry and not terribly distressing.

He is only 12 weeks, but it seems like long-long ago since he was in hospital with heart-failure. It even seems like ages ago that he was getting the nurse visiting twice a week, and me giving him medicine 5 different times a day around the clock.

Roy seems to be a fan of Elvis. I gave Sheena a bath and left him listening to Elvis in the lounge. Not a wimper.

Dangerous Dinasaurs

Roy had his first night sleeping through the night without a feed. Not bad going for a breastfed baby at 11 weeks.

He has so far managed to avoid his sister's very bad cold and conjunctivitis. He's already laughing at her singing antics at dinner time.

Roy is now off his lasix and we've noticed that his face is filling out now that he is off the diuretics.

We still can't work out if his hair is blond, brown or red, but I am leaning towards dark-blond.

MUCH Better

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Roy is doing so well. His appointment with the cardiologist went better than we expected.

In the space of a week he's been weaned off all his heart meds. Roy is MUCH more settled so its either the Zantac kicking in, me going off caffine, or its coming off the captopril, either way its lovely... and a relief.

We see the cardiologist again when Roy is 6 months, and he'll have another Echo and an ECG then. He's still got a murmur now, but its much better. He is so much healthier that he no longer qualifies for the monthly RSV immunisation shots that were costing $2,500 a pop (govt funded). If he got bronchiolitis now, it would be similar to most kids getting a nasty chest infection, and not immediately life threatening. We only have to get Roy weighed as per the normal schedule which is about monthly at his age.

Otherwise, Roy is rolling over already having just turned 11 weeks. He's about to go in this photo.

Smiles for the camera

Roy is still very unsettled for periods of the day. I still think it might be due to all the heart-meds he is on, and it upsetting his tummy. He only had one feed overnight last night (hip-hip-hooray), but was up for an hour after it rather than dozing back off to sleep. Ironically, I am sleeping much better than when I was pregnant - and it wasn't just the last trimester, it was the whole pregnancy.

Roy sees his cardiologist today, and I think (hope), the plan will be to take him off captopril. He hasn't gained weight over the past 10 days, so he might just not be having a growth spurt for now. Regardless, I am confident that he'll be happy with how Roy is looking.

Is it over?

Roy has had a very difficult week with colic. Not a lot of fun for anyone in the house. We seem to have found some relief thanks to Donnalix. Roy's Peadiatrition suggested it, and its the last line of non-prescription medications to treat colic. He's been settled since he's had it today - amazing what 1ml of the right stuff can do to a baby. Infacol and Gripe Water had been pretty much useless.

Otherwise, the Pead was pleased with Roy, and he said if he didn't know Roy's cardiac history, he would have no concerns with his breathing or general health. We have to see him again when Roy is 6 months, but we'll be seeing the cardiologist regularly in the meantime.

Not much else to report. Colic is quite all consuming.

Seven Week Smiles

We got several genuine smiles from Roy today. Quite the happy camper. He barely needed his do-do (which he's been addicted to), so I think his tummy has settled down. He was pretty content wherever he was which made the day very easy. Sheena is getting used to her baby brother being around, and seems to be able to hear him call before I do, saying Roy-oy-oy. The health nurse visited him today to do all the measurements and developmental checks which are going fine.

Yesterday was quite another story, when he had his immunisations. He got the normal vaccinations, as well as his extra one for the RSV virus. We had them done at the Childrens hospital due to his cardiac risk factor. I left home at 9.15am, the appointment was at 10.30am, and I didn't get out of there until 2.30pm. No ones fault, just a combination of going at baby breast-feeding pace, as well as going from clinic to clinic while I sorted out getting scripts for this and that. Roy got a mild fever and was quite unsettled in the early evening, so had some panadol that helped.

Today

Out and about.

Roy enjoyed his first trip to the park. He is allowed out as long as he stays rugged up. I bought this snow suit before Roy was born - how ideal!

Fresh Face

Here is Roy when he was 1 day old.
Very fresh. Roy is now 6 weeks, and as per the last Post he had a very good report from the Cardiologist yesterday. Its very unlikely he'll need surgery. He has to stay on meds for the time being, and has to stay free of infection (away from pre-schoolers as an extra precaution) , and continue to gain weight. He is so far having no problem with the latter, and he's now 4.98 kgs! The doctor was happy with his work of breath, and although he works hard at times, like during his bath or after feeding, this is not unexpected for a heart kid. Basically he is no longer in heart failure, and all going well, he should continue to improve. What I got from the consultation was that if he continues on his current path of well-being, he should be free of meds and symptoms by the age of 5 or 6 months. Lets hope.

The good news is.......

Roy had a review with the Cardiologist today. It went very well. He is very happy with Roy's progress. Roy has put on a lot of weight and the murmur sounds better. We will continue with Roy's current medication for another and then he will be reviewed again. We are delighted and relieved with the news. More details in the next few days.

Staying Up

The health nurse visited to weigh Roy yesterday, and she suggested that we take him to the GP today to get his advise, because Roy's respiratory rate was high, as was his work of breath. His trachea was sucking in with each breath, and Roy had been looking and acting anxious all day. Amazingly I got an appointment with the GP for that afternoon which is usually impossible at our clinic. The doctor thought he was fine, so that was a relief, and we've got colic drops that are safe for Roy. The pain from the colic was making him anxious and work harder.

The colic drops have improved Roy's comfort today. He can still get squirmy at times, but no where near as bad as yesterday.

He was a breech baby, so seems particularly happy in his baby carrier where he can stay upright (photo) - helps get his wind up too - 4 big burps in 10 minutes after putting it on. He is cooing again now too, which is so sweet.

5 weeks of Roy

Roy is not too happy about things at the moment. He has some colic which is troubling him a lot. He is just very uncomfortable. I think its wind and or reflux, but because of his heart meds, I can't give him anything to help relieve the pain without checking it with a doctor first. It could actually be his heart meds that are bothering him so much, and causing a stomach upset.

Vive le tour

Roy is not quite right. The health nurse that visited today said that she wouldn't be surprised if we ended up in hospital over the weekend, but he is mostly OK. Ironically, he may have gained too much weight over a week, which means he might have retained fluid - a sign of heart failure. He put on 100gm in one day which is unlikely to be milk. He is a little puffy in the face. His breathing is laboured at times, but at other times it is steady enough.

The hardest thing about Roy's situation, in that he is OK, but his condition can very quickly go backwards. To look at him, you'd never know he had the slightest thing wrong with him, other than the lingering jaundice. Even the jaudice is now fairly faint. Its tough on hubby and I to know when to act, when to not act, and if you act - how do you act? Is the GP the best option? Does he need to be seen back at the cardiac ward? Should we wait another hour, or can we wait until the morning if something is not looking right?

Anyway, we're staying put, because at this stage the hospital would only have Roy in for observation, and probably poke him too many times looking for something sinister, when he might get better in a couple of days.

Monday Weigh-in

Roy had a visit from the Maternal Health Nurse today. The good news is that he has gained 280 grams - which is above target. He is looking less orange too, so we are hopeful that his jaundice is improving.

Home again

Roy is back at home now. His doses of medication have been increased. He seems to be more awake, and is nice and alert today. He appeared to be reaching out to tap his toys on his bouncer which was rather impressive.

The community nurse did a weigh in again today, and Roy's gained a bit of weight, but is falling off the charts a bit. Not unusual for heart kids.

Before Roy was discharged from hospital, he had a very very very sleepy afternoon, and was not very responsive. All his observations were fine, but they've asked us to to go back into the hospital to have a ward review tomorrow. The medication they increased can dramatically drop blood pressure (which is the point of it), but it was within acceptable limits yesterday, so I guess they want to check that he is still tracking OK.

Mark and I were advised to have flu-vac's for Roy sake. Roy also qualified for special immunisation that stops him getting RSV - the common strain of bronchilitis. If he got it in the next few months it would hit him really hard. It costs $10,000 for the immunisations which is administered monthly over the next four months. There is a strict criteria for kids to qualify for it, but the cost benefit analysis is that the govt is better off funding it for some heart kids rather than them ending up in ICU.

Back to 7 West

It is now Wednesday morning. On Tuesday afternoon, we decided that Roy wasn't doing as well as he had been. He was very lethargic, looking more jaundiced, not feeding well, breathing hard,grunting occasionally,not keeping his food down.. So, we went back to the Children's Hospital. We spent the evening in the resus area - we had the same nurse as last time, which was great. They decided that he has suffered heart failure again and have adjusted his medications.

Roy has been admitted to the Cardiac ward (7West) again.
Jo stayed with him. Nan and Pop are looking after Sheena.

A short spell at home

Roy came home on Thursday last week (June 26th). He had improved in hospital and was improving at home too. We were getting in to a routine with
him and Sheena. His big sister was enjoying the novelty of having a
brother and saying "Roy-oy-oy" when given a chance. She would look concerned when he cried but we reassured her that he was just asking for food.



The Enhanced Maternal Health Nurse came to see Roy on Friday and Monday. He was doing well - he had put on 80 grams in 3 days. He responded well to her checks and was very alert on Monday.

Two days at home before 2 weeks in hospital

After 2 days home from the Maternity hospital, Roy went into heart failure, and he spent the following 2 weeks in the Cardiac ward of the Childrens Hospital in Melbourne. With doses of oxygen, diuretics and other stuff, he improved during the 2 weeks.

Surgery was looking very close at one stage but in the end he was sent home on medication with a hope that he would avoid surgery.

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 infections, 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.

Roy - June 5th arrival

Roy arrived via C-section weighing 4kgs at 8.45am on June 5th.
He is a young brother for Sheena, our 2 and a half yo daughter.

Why Roy? Well, his Irish cousins already had some of the other good names.
Here is some info on the name Roy:
The boy's name Roy \roy\ is pronounced roy. It is of Irish and Gaelic origin, and its meaning is "red".
(from here: http://www.thinkbabynames.com/meaning/1/Roy )


Unfortunately, a heart murmur was detected after a few days. It was diagnosed as a moderate to medium VSD and some smaller ones. This is the most common congenital heart condition and often causes no issues as it can fix itself over time. He was doing fine while at the maternity hospital. Roy was discharged with a plan to follow up in the next few weeks as an outpatient, expecting that the holes would spontaneously close.