Friday, 1 April 2011

Friday 1st April 2011

We've just heard from the doctor and its more good news. Adam has not had anymore convulsions, though he is still having jittery tremors (imagine an adult severely shivering with arms and legs tensed up) This is likely to be morphine withdrawals and after effects of illness. They're increasing his feeds again and shortly his arterial line will be coming out. We will also be able to hold him for the first time today.

He is still on many medications and this will still be a very long road. The doctor believes he is very likely to have brain damage and he will be taking MRI's next week to assess the extent of this. At some point over the next few days, they're hoping to take him off the feeding tube to see if he can feed orally.

Later on Friday

I'm feeling pretty fragile right now. I've just been allowed to hold Adam for the first time since he's been ill. That was of course amazing, and he was peacefully still in my arms but just ten minutes later I had to give him back as he needed his milk and has to be propped in a special position to cope with it. As he was taken back he started to cry and shake again...as did I.

Later on

I've had a long cry (which realistically I needed - I've cried a bit up until now but haven't truly broken down, the situation has just been too overwhelming) One of the midwives came just to do a normal check on me, heard the story and ended up weeping with me too, her compassion and empathy was so helpful. I'm calmer now though a bit drained. I will shortly be going back to the unit as we've finally been given permission to introduce George to his brother so expect more tears later!Anna, no I couldn't have held him while feeding, not yet anyway. They had to withdraw his food yesterday morning as he'd been vomiting overnight. They fasted him, then when he seemed ready tilted him so it was more likely to stay in and are currently monitoring his feeds until they're sure he can keep them down. Then I might be able to hold him while feeding.

Its true that he does recognise me and calmed right down in my arms, that's what made it so hard to give him back particularly when it upset him. The recognition is obviously good. I'm concerned though that yesterday when his eyes were open he could fix on things most of the time but today his eyes were rolling back in his head when they were open which is worrying. However in my arms he went straight into a relaxed sleep. Hopefully this is just another temporary symptom but who knows. He's having his first MRI next week to try and assess the extent of any brain damage that may be there.

I should explain that the nurses weren't in any way excluding me and it wasn't that they were feeding him, he needed to be back in his incubator which tilts to the right angle and then holds steady in a way that no one, nurse or parent, could do. He is also then monitored in the incubator electronically while he's feeding. Truly they are doing everything possible to balance his health needs with my cuddling needs, its just a very hard process not to be able to pick up my son whenever I wish. However tonights good news is that he is now stable enough to be picked up and cuddled twice a day so the nurses will set me up with his wires draped around my wheelchair to let us cuddle morning and afternoon from tomorrow. :-)

On his eyes: I did ask his nurse (and yes its a 1:1 ratio) about them and she confirmed that all babies eyes roll back to a point but Adam does so more than is expected. It is possible its a temporary side effect of medication withdrawal just like the shaking so while its upsetting to see, I've just got to wait. The brain assessments will begin later this week as he's stable enough to cope and we should start to have some idea. I can deny that despite the odds against him I'm both hoping and praying that he won't have brain damage. The doctors are doing *everything* they can and I'm truly grateful for their amazing work but I'm still asking the "Great Physician" to lend a hand too.

George was so excited that for once it was no challenge at all for Chris to get him in the shower before he came - only mothers of boys will know just how excited that means!!! He loved meeting Adam even though he kept calling him Speck lol. He was quite content to sit holding hands and gently stroking his head for nearly 2hrs - I don't think he's sat still for that long without getting bored in living memory! I think Adam has a steller big brother and hate to think what would happen in future if anyone picked on him!