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! 
Firstly my apologies for not writing for such a long time. I hope you have all assumed that no news is good news!
The news from the hospital is very positive. On Friday morning we had an appointment to see the doctor who has been looking after Massimo over the last 2 weeks. She wanted a chat with us as she was handing over to another doctor for the next 2 weeks.
Just a quick update to let you know that I didn’t get my cuddle yesterday but am hoping to get one tomorrow, however Massimo is VERY happy indeed in his new heated cot and is waking up nicely. The doctors said it would take some time for all the drugs to work their way out of his body, but he moves a little more every day. He is beginning to really grip when you give him your finger to hold and he seems to respond to my voice and touch as well as J’s voice and touch, which is very satisfying. All in all, the progress is good. What the future will hold, we don’t know as yet, but for the moment every step forward is a positive thing. I am attaching a picture of the little chap in his new bed with tracheostomy in place. As you can see the ventilator (big clear tube going to his neck, with 2 blue and one clear tube coming off it) looks quite daunting but once he learns to breathe on his own this will go and he will be left with a small plastic circle round the hole in his neck – still not nice but necessary. 
Sorry it has been so long since my last update, but we seemed to have been really busy and by the time I was ready to send an update it was gone 6pm on Friday and most of you will have left work for the weekend, so I decided to postpone.
We were woken at 2am by the Neonatal Unit asking us to come in as they were going to perform the tracheostomy on Max as a matter of urgency. When we got there the ENT surgeon was there and discussing things with the various doctors and nurses and they decided that their primary concern wasn’t the tube in his throat, as it was in the correct position, but the fact that the hole in his lungs was seeping air into his body and that the drains were failing to get rid of it. They inserted a new drain and got it draining some of the air, but his breathing was still not settling well. He seemed stable so we left at around 4.30 am. We came home and tried to sleep only to be woken at 6 am asking us to go in to talk to the doctors. The decision was made to perform the tracheotomy as his breathing was too unstable to maintain properly.
This afternoon, when I went to the hospital I was told that the ENT consultant was coming to see Max at 5pm and that they would operate. Well, I nearly fainted! J had been to see him earlier in the day, and been told that the ENT consultant would be there tomorrow, so in anticipation, J went off to get some work done so he and I could spend the day at the hospital tomorrow, so I had to call him back.
Massimo (Max) David Hope-Mason …. was born on Friday 31st January 2003 at 9.55 am weighing 1.556 kilos (3 lbs 6 oz) – his gestational age was 32 weeks and 2 day – so 8 weeks early. He is in St George’s neonatal unit, which is the best in the South East and is being well looked after.
