Thursday, 31 March 2011

Thursday 31st March 2011

Such good news today. Adam is off the ventilator and breathing on his own. He also hasn't had a seizure in 48hrs so is now off the brain monitor (though the long term damage from all the previous ones is yet unknown) The next step is to slowly reduce the salt/sugar/fat solution that's supplementing his milk until he shows he can tolerate full milk. He's also AWAKE and moving all his limbs and looking at us! :-D

It also should be said that we were there when he opened his eyes for the first time so once he could focus on anything, the first was my face and then he looked round to fix on Chris too. A perfect moment...

They will now let down the sides of his bassinet and around the wires we can touch him, hold his hand and in Chris's case tickle his feet (horrible Daddy). From time to time he will grip my finger as he slowly moves his arm immense progress.

Wednesday, 30 March 2011

Wednesday 30th March 2011

Well I've been physio'd and its been confirmed I've got a "full split" not just SPD (which equals pain) not just a partial pelvic split (=pain+slightly separated pelvic bones) but a full split (=agony + is anything connected to anything else in there anymore? no? I thought not) nice to know I've done it in style, no wonder why its crutches and a wheelchair. ::sigh::

About 2 staffers haven't realised how bad it is and tried to get me walking more than I should be but each time another one has rushed over and said, "No! That's a full split there!" At which point looks of horror appear and they back away...

Its been explained to me that all women produce the hormone relaxin during pregnancy to loosen the joints in preparation for labour. When some women produce too much, the joints loosen a bit more, rubbing on each other causing pain when its a bit more the joints loosen yet further resulting in a partial split (few things properly connected) while a full split means virtually nothing is connected. Because this is all related to a hormone, that hormone must recede from the body first so things settle down before any "treatment" can be considered. So in the short term its about helping me cope with mobility aids and eventually once some healing has occurred both the physio and the occupational therapist will work with me and if necessary I'll pursue chiropractic privately.

Later on Wednesday

Had some good news on Adam today. He's responding to treatment and now tests negative for Meningitis so the penicillin is working. The doctors are cautiously confident that he'll live. The sedation is slowly being reduced so at lunchtime we saw him briefly flicker his eyes open for the first time. He might even come off the ventilator by tomorrow. The main huge worry is the level of brain damage - still unknown.

There are two forms of this infection, GBS on its own or the more serious version which is GBS Meningitis which is what Adam has said. The infection itself is very common and 1 in 5 women carry it as just one of the many bugs that live in our bodies but very few babies are susceptible to it so it passes them by. The Consultant explained to us that of the 5000 women who give birth in this hospital every year, 2000 will carry the bug but only 2-3 babies will actually be affected by it and so contract the illness. Adam sadly was one of the 2-3 for this year. 

There are also two ways of getting it - early onset GBS occurs in the first 2 days of life and is contracted from the mother. Late onset is in the following days and may have been contracted in other ways.

One (but only one) of the risk factors is the possibility of ruptured membranes 18-24hrs before delivery, mine ruptured 29hrs before delivery. This is why in the UK if spontaneous contractions start they leave you alone for a while but if your waters break they want you straight into the hospital to be checked for signs of infection. They then leave you alone for .up to 24hrs when they check you again and at at hour 48 if you haven't delivered they induce you (and I had an appointment for Saturday morning but labour started Friday night).

If you're in a risk factor category then antibiotics are started straight away and induction is offered sooner but I wasn't in a risk category so there was no reason to suspect because when tested on Thursday after my waters broke, the result was negative. The doctors do believe it was contracted from me, they just don't understand how, the test might have been a false negative.

Of course I would have taken penicillin during labour if it protected  child. There's no hell on earth worse that sitting in intensive care watching your child on endless monitors and tubes not knowing if he'll live or die and even then not knowing if he'll have life long brain damage.

There's also huge support here for natural unmedicated deliveries so they intervene when they need to but avoid knee jerk reactions.If I ever got pregnant again though I would be both tested ahead of time and treated with penicillin during the whole delivery to try to prevent a recurrence.

However let's get Adam breathing on his own and hopefully without brain damage first...

Later on Wednesday

Adam is being taken off the ventilator tomorrow morning as its believed he can now breathe on his own. This is a huge step forward but also a risky one (and if it doesn't work he'll have to go back on it) Please specifically pray for his safety during this process. Thank you.


One thing that did make me smile today: Adam's sedation is slowly being reduced (he's been in a virtual coma) and he's slowly waking up but the consultant said it was a touch too slow so he needed a stimulant to help him out and ordered a caffeine infusion. Intravenous caffeine in the first week of life (with a milk chaser of course) That's my boy! :-D

Tuesday, 29 March 2011

Tuesday 29th March 2011

Today has been a slightly better day for Adam even though its been very hard for us. Adam is less yellow than he was and some of the drugs he doesn't need have been withdrawn. He's still sedated but not quite so deeply so we could see some gentle movements as he stretched. He's had far fewer fits and tonight he was given his first breast milk through his feeding tube – the first food he's had. Baby steps...

Monday, 28 March 2011

Monday 28th March 2011

Late this afternoon we've had a full diagnosis on Adam. It has been confirmed that he has both a GBS (Group B Streptococcal) Infection and also Meningitis. the good news is that both of these are common and treatable with penicillin and as he's already been on this since Saturday, he's part way there. They can also reduce other drugs he's been on now that they know what's really wrong so can target the treatment.

The other good news is that the cause of his illness is purely infection rather than anything in his body chemistry. So his lungs, heart, kidneys and liver seem fine. However the bad news is that while treatable, both of these infections are incredibly serious and while his life is in less danger than it was on Saturday, it still is significantly in danger.

The other problem is that because both infections hit so severely and so strongly, he is classed as having septicemia because they're in his blood stream and so attacking his brain. If they can save his life (and he will be on penicillin a minimum of 2wks till they know this) then there is a 50/50 chance of brain damage because of the fits. If he is one of the unlucky ones, he may end up with anything from epilepsy to cerebral palsy but that won't be known for a long time to come. Needless to say we'll be praying he's one of the 50% who come out with no complications but the doctors are very concerned.  To all of you who have been in touch expressing love, prayers and concern - thank you. I'm sorry we can't respond to you all personally but please know how much we appreciate your contact. I'm still hospitalised myself, still very very shaky on my feet and needing crutches and a wheelchair to get about but in tiny margins, I'm getting better. Thank you to you all and please keep praying.

Sunday, 27 March 2011

Sunday 27th March 2011

Adam still in intensive care, not yet breathing on his own but they're able to turn down the ventilator in minimal amounts. Still having fits but drugs are reducing them. Still more questions than answers but while he's no better, so far he's no worse. Have been able to see him twice which is better than nothing.