We’ve just been to the hospital for Seabass to get his wounds checked etc.
All is going well. They said the shunt is doing its job and his head measurements and weight are going in the right direction. Huge relief. Now we can relax a little, I hope, and enjoy ourselves.
It’s now a case of seeing how he progresses. We’ve been told he probably won’t attend mainstream school, but who cares?! He’s here and such a cutie, that’s all that matters. No matter how he develops, he has so much love around him that he’ll be a happy little boy – I’ll make sure of that.
Keep checking the blog to see how he’s getting on. I’d love to carry on sharing his journey with you.
Massive hugs to everyone from all of us.
Seabass must be feeling a lot better, he was wide awake all night – kicking, looking around, feeding and gurgling. I hope this new, more awake, baby is a sign of things to come (just not at night).
He is looking around more, seems more alert, is crying less as the hours go by, and seems to be trying to smile.
Although we were told before he was born that he wouldn’t be able to feel the cyst, I can’t help but think that maybe that was said to stop us worrying. If he had a large pressure build up, he must have had headaches. Hopefully this shunt has brought and end to those now.
We’re meant to be getting sent home today. It’ll be nice to try and get on with things now.
Seabass has been back all afternoon following his op. All went well as far as we know. Apparently there was a lot of pressure in his head so it was good the shunt was fitted today.
He has been a little cranky – but who wouldn’t be after anaesthetic and 3 holes cut in them?! He is moving his eyes and looking around a lot better due to the relief in pressure. Hopefully once all the drugs wear off, he’ll feel a lot better in himself.
The staff here have been brilliant. They can’t do enough for you and they’re all so friendly. I’m thinking of moving in.
Hopefully we’ll be leaving tomorrow, then we’ll come back next week for a check up.
After our 20 week scan we were asked if we would consider a termination, I’m so glad we were dead against it. Our little man has been such a fighter and so much stronger than we thought he’d be. He’s done us all proud and hopefully will continue to keep being our little miracle.
We love him and Tinkerbell lots and can’t wait until they can play together. She’s so good at trying to help look after him. She’s a little superstar.
I’m glad we have our Little Miracle and Little Superstar.
The little man has been fed and washed, so he’s ready for Theatre in an hour’s time.
He looks so little and helpless lying in his theatre gown. It seems a little too big for him, as if it shouldn’t be him that’s wearing it – he’s too small for surgery.
I’ll be keeping away from the Theatre this time, I found it too distressing watching them put him to sleep. I wanted to push them off him. He’ll be going down with his dad, hopefully he’ll be less wimpy than me.
Fingers crossed for Seabass please xx
After yesterday’s check up at the hospital, we found out that Seabass’ surgery hasn’t worked. Although the cyst has decreased a few millimetres, his head circumference has increased another centimetre. He now needs to have a shunt fitted, which is getting done tomorrow. We are off to hospital again today to check in and sort out all the paperwork.
Hopefully this will be the last time our little man’s head needs to be cut open xx
We had an appointment with the Prof again on 3rd June. We’d been told on the phone it was an appointment to “plan the birth” and there was a possibility that he could decide to deliver on that day – clearly that didn’t happen because I’m writing this.
We were told (again, on the phone) that they were expecting there to be no complications with the birth and that Seabass would get to spend at least one night with me in the hospital before being transferred to the children’s one. There he would be monitored and what happens after that we just really don’t know.
When we went for the appointment on 3rd, we took all our hospital stuff with us. The whole time we’ve been told that delivery could be any time from 34 weeks. When the Prof did our scan and said there’d not been much change again and the Caesarian would be booked for 1st July, my heart sank. I know it’s better for Seabass, but I’d had it planned in my head that he’d be here by next week really and I just want him to get here so I know what we’re dealing with. I’m also quite possibly the most uncomfortable I’ve ever been (selfish to think of that I know). I can’t sleep, I have horrible backache and I get tired so quickly it’s just stupid. Poor Tinkerbell has got a pretty cr*p mum at the moment.
We were told the baby doctors would be present at the birth and, assuming there’s nothing majorly wrong, we would get to say hello and give him cuddles but then he’d be taken for assessment. It was unclear as to whether he would spend the night on the neonatal unit or would come back to be with me. The OH gets to stay with him though 24/7 whilst he’s on neonatal and will be able to go with him to the children’s hospital, which I’m glad about. I was worried Seabass would be on his own as I know I have to spend at least 2 nights in the hospital, so didn’t know how manoeuvrable I would be.
I can’t actually see myself making it until 1st July, Seabass feels pretty low down and I keep getting lots of twinges, I was also two weeks early with Tinkerbell.
So the update so far is we have a pre-op on 28th June and Seabass will be here by 1st July. It’s taken me a while to write this as thinking about him being taken away from me (again, I know it’s for the best) just upsets me too much. Our baby should be in a cot next to me until its time for us to go home. Not attached to tubes waiting for brain surgery x
Had the appointment with the professor today.
Got to have another MRI early next week, then a possible meeting with the neurosurgeon again the week after. If we don’t have to attend that, the professor and neurosurgeon will discuss our case again and then we will meet with the professor after that.
So basically, we don’t know anything else and I don’t much feel like trying to make this post longer.
Will let you know updates next week.