Month: March 2003

Massimo is doing really well with his time off CPAP and although he is 6 hours off and 2 hours on, the doctors are only keeping him on CPAP because his immunisations are due and they want the extra help there in case he has a bad reaction to them. Apparently many babies have some sort of reaction to the injections, fingers crossed that it doesn’t delay Max getting better. He is due for the injections tomorrow night.

Massimo had a lovely cuddle with Great Aunt Karin this afternoon, and then another long cuddle with Great Uncle John. Max was awake most of the time with Karin, but by the time John arrived I think he decided that no matter how much he wanted to stay awake he was too tired!

I went to the hospital today to find that there was a card waiting for me there from Massimo “to the greatest Mum in the world”! All the mums in NNU got one, isn’t that sweet and thoughtful of the staff?

Max gave me his own brand of best wishes today by deciding to poo twice whilst I was changing him, and the second time it was rather projectile and got me, and his bedding. We have photographic evidence for you all to have a giggle at!

Claudia finally got her cuddle after weeks and weeks of waiting and Massimo was as good as gold for her. (Each time she came there has always been some medical impediment!)

Massimo is still doing very well, 4 hours off CPAP and 2 hours on.

J and I went to the hospital today thinking we had a meeting set up with the doctor for 4.30. In we went, as we do every day, when we saw that Max’s name was no longer on the board under Nursery 2, he was ther under Nursery 3! He has been doing so well that it wasn’t really that much of a surprise, but lovely nonetheless!

So he is back where he was, in a normal cot in the High Dependency Room. He is now on 4 hours off CPAP and 2 hours on, and all the nurses agree that he is happier and more settled OFF CPAP than on!

The doctors have decided not to move Max from Intensive Care (Room 2) to High Dependency (Room 3) as they have decided to start weaning him off the CPAP and want to keep a close eye on him.

They have started him on a 2 hour cycle: 2 hours with CPAP, 2 hours without and he seems to be tolerating it well. Well done Max!

Justin learned to suction Max’s trachy tube this evening and did it extremely well. It’ll be my turn tomorrow. This will be something that J & I will have to do regularly for Max as long as he has the tracheostomy.

It is now 2 days before Max’s actual due date and for all intents and purposes he is now a ‘term’ baby. His current weight is 2.8 kgs (6 lbs 5oz) – which is a respectable weight for a newborn! Grandpa is clearly impressed!

We got verbal MRI scan results on Friday from the doctor. As far as the fluid levels are concerned, they cannot see what caused the increase and therefore we really know no more than we did before. The situation will have to be closely monitored. Three things could happen: the brain size could catch up with the fluid levels, the fluid levels could remain abnormally large but not increase the pressure on the brain, the fluid levels could increase and put more pressure on the brain causing severe brain damage. Only time will tell, however the growth of the fluid levels seems to have stabilised in the last week.
Continue reading “MRI results”

As you can tell by my news becoming further and further apart, things with Massimo have, on the whole, settled. However, last weekend, Max had a bit of a bad time. On Saturday morning when Max’s oxygen levels dropped badly the nurse cleaned/suctioned his trachy tube and found that there was a lot of fresh blood. Max was immediately taken back into the Intesive Care Unit and they contacted the ENT department to try to discover where the blood came from and what had caused it. Apparently granulated tissue forms along the bottom of a trachy tube once it has been on site for a while. When suctioning his tube this tissue must have been touched/knocked causing the bleeding, which of course went straight into his lungs and caused his drop in oxygen levels. Max was extremely unwell for a period of time and he was put back on the ventilator and suctioned regularly to remove the blood which he was coughing up. Whilst all this was happening his trachy tube then got knocked out of place and the nurses kept him going with the ventilator tube going straight into his lungs whilst they waited for the ENT surgeon to come down and put a new tube in.
Continue reading “Backwards step”

The weekly update is due and there is some good news and some bad news. We had a meeting with the Doctor in charge on Friday and it was really good to have a thorough update from her. The nurses do try to keep us abreast of what is going on but as they change twice daily it is easy for things to be missed.

Firstly, we were told that a neurologist was coming to see Max on Thursday. However it wasn’t until Thursday that the nurse told us that the neurologist was coming because they felt that Max was “a quiet baby”. This was explained further by the doc on Friday. She explained that although Max’s muscle tone in his arms and legs was good, he was a little floppy in his torso/back area.

Along with this they had also spotted, again on Thursday, that Max’s head, which had been growing steadily and normally, had suddenly grown too much, and also that they had not done a head ultrasound on him for a while. The head measuring and head ultrasound and things done to all babies in the Neonatal Unit as a matter of course. The ultrasound has shown that the bits in the brain which are filled with fluid are too large and are out of proportion with the rest of his head.
Continue reading “Good & bad news”

Not much has changed since my last email last Tuesday. Max now weighs 2.154 kg (4lb 12oz) he was born at 1.556 kg (3lb 7oz) and is beginning to look chubby cheeked and healthy. The doctors and nurses on the unit are very complimentary about him, one of the doctors said “he is very beautiful, and we see a lot of babies in here!” So I know I’m biased but other people seem to agree too!

He is very settled and happy and growing. His oxygen levels still drop periodically but these seem to be getting fewer and further apart and although he continues to have lots of secretions he has learnt to dribble a lot of them out (not very pretty but useful for him at the moment!) and he seems to need suctioning less often than before.
Continue reading “General update”