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.