9 1/2 weeks old

update

We had a call from one of the Dr's at Starship on Monday after their meeting to say that they reviewed Oscar's case and his surgery wont be in the next 2 to 4 weeks but in 4 to 8 weeks. This is because he is doing well and isn't presenting with any side affects so that's good, but we would really like to know when it's going to happen and I am concerned about it stretching on as it means delays to his cleft surgeries.

Oscar had an appointment at Greenlane Hospital on Wednesday for a hearing test - there is a newly introduced Infant Hearing Screening Programme which he failed in hospital in the days after his birth, so this was a follow up test. He didn't do too well unfortunately as he has fluid in the middle ear - glue ear, which is pretty much always present with a cleft palate and should sort it's self out once he's had the palate repair done next year (hence my concern about the delays). So I was told that we have to talk to him with a raised voice so he can hear us and we have to go for more tests but they can give us a headband with two little devices which sit behind the ear and send the sounds straight to the bone and by-pass the middle ear so he can hear better. This will be important to help him develop language skills over the coming months.

Next Friday we see the ENT Specialist who is part of the large cleft team, so hoepfully she will be able to answer some of our questions about his hearing.

The taping went terribly - Oscar hated that as much as the bonnet/elastic combo and his mum found it all too hard and heart breaking, so we're taking a break from that for the minute. Hopefully I wont get in too much trouble with the orthodontist next week!

On the plus side, he is continuing to put on weight and is smiling more and more everyday.

Fiona

Clinic update

Oscar had both clinics yesterday - a quick checkup at Oral Health at Middlemore where they adjusted his mouth plate and applied some second skin to his checks and then a piece of taping across his lips (or lack there of) which he has to wear fulltime to help shape his lip area in preperation for his lip surgery.

Then we had heart clinic at Starship. This time he had to have all the tests done, so x-ray, ECG and echo scan. It was a long afternoon and a long wait at the end of all the tests to see the doctors. They were really happy with his progress and were impressed with his weight gain (about 20 grams per day) as it is hard for heart babies to put on weight. They have a meeting on Monday where they discuss all the cases and expect that they will decide to operate on Oscar in about 4 weeks time.

Although there will never be a 'good' time to hand over our precious baby, I am glad that the surgery will take place sooner rather than later (we had thought it could be 2 or 3 months before the op).

We will probably get about a weeks notice for the surgery, so we'll let you know when we hear.

Special thanks to our food rosta mates - had Robyn's fabulous cannelloni when we got home from our very long day yesterday! Bloody marvellous.

Numero uno

So welcome all to our blog to keep you up to date with Oscar's progress.

We decided that since Oscar has quite a few medical procedures to go through in the next 12 months that it would be good to start a blog and keep you all up to date with the latest news without you needing to call for medical updates. Of course all the terminology is confusing for us too, so this blog gives us the chance to get it all down clearly. 

Many of you won't have heard that to go along with the cleft lip and palate, Oscar has recently been diagnosed with a hole in his heart. It is called a VSD - Ventricular Septal Defect. 

"A VSD is a whole in the ventricular septum - the muscular wall that separates the right and left ventricles, or main pumping chambers of the heart. This opening allows the movement, or 'shunting', of blood between the ventricles. Most commonly, oxygenated blood from the left ventricle enters the right ventricle because there is  a greater pressure in the left ventricle and the resistance in the lungs is significantly lower than in the body tissues. This is known as a 'left-to-right-shunt'". 

"Ventricular Septal Defects are the most common form of congenital heart disease. Small holes usually close spontaneously in the first year or two of life. Large holes almost always require surgical closure in the first year of life. Larger holes may interfere with a child's feeding and growth and may cause rapid breathing, excessive sweating and poor weight gain..." (luckily for us, Oscar has not presented with any of these symptoms so far apart from his mildly increased respiratory rate).

"In a 'left-to-right-shunt', blood that just returned from the lungs crosses the VSD and goes back to the lungs again. This causes increased pulmonary (lung) blood flow. A heart murmur occurs because there is a pressure difference between the two ventricles and there is a turbulent blood flow crossing the hole. The smaller the hole the louder the murmur."

Oscar's is a large hole, which means he has to have surgery to correct it. 

We weren't expecting this added complication but thanks to our great health system Oscar is in very good hands and we have been well taken care of! 

Re Cleft: As you will know we had thought cleft-lip repair would be done at around 5-6 months of age and cleft-palate repair at around 10-12 months of age. Oscar Noah's heart surgery will force these other procedures to be delayed. While recovery from the cleft-related surgeries was expected to be comparatively immediate with Oscar released from hospital on the following day, the heart surgery will be more taxing with Oscar expected to be in hospital for up to ten days.

To be updated as news comes to hand.