Martha isn't even 14 weeks old and I can count 6 days which I have said at the time "This is the worst day of my life!" Each one always seems to be worse than it's predecessor.
I've waited all last week for Martha to have a Pacemaker fitted and yesterday that day finally came yesterday. She was in theatre for a little over 2 hours; but as any parent who's ever waited to hear if their child has come out of surgery will tell you - time has the clever ability to stand still.
When we finally got to see her I could have collapsed with relief.
She wasn't on Adrenaline and they hadn't increased her Millrinone or her Morphine, she was basicallysleeping off the Anesthetic.
But a few hours later we encountered the first problem. High levels of Blood Sugars. Normally they should be 4 or 5. Martha Grace's was 32. Apparently it's a common response to the stress of surgery. But after a course of insulin infusion she was perfect again by this morning.
In fact she was doing so well this morning that they decided today was the day to extubate. I was sceptical this would actually happen, they've tried twice over the weekend but by the time they actually got around to doing it - she was far too tired to cope.
We popped down to the Lagoon for a Panad at lunch time, even stopped to buy a few books from their Book People book sale. We arrived back on the ward to find her already extubated.
Then...I had another "Worst day of my life".
She became unsettled, arms and legs thrashing everywhere, crying - completely distressed.
Before I knew what was happening there was a Doctor at the top of her bed holding a mask over her nose and mouth manually pumping air in to her lungs - telling me my Baby isn't breathing and she needed to be intubated.
Suddenly the room was full of people working on her, staring at her monitor, staring at Martha.
I'd only just sent a group message to my friends that she had come off the ventilator and now I was facing telling them that she's in trouble again.
Worst of all I had to tell Mark how drastically serious things had suddenly gotten.
After a while they established what the problem was. It isn't respiratory - it's circulatory. Martha's Atrium is fluttering at 300bpm, it isn't having enough time to fill with any decent amount of blood to pump down in to her Ventricle. Meanwhile the Ventricle down below is completely unaware of what's going on because their signal to each other has been lost (which is why she has a pacemaker) and so it's happily pacing away at 120bpm. But because it isn't getting much blood from the Atrium above - there isn't much blood to send around her body.
They've given her a drug to try to slow down her heart, but this can't be given too fast a dose because it can have an adverse effect. They then hope to be able to override the rate of the Atrium and shock it to stun it - then re-set. But so far, even after 4hrs on the infusion the rate is still the same and the portable machine can't even catch up with Martha's heart, let alone override it.
She's much more settled on CPAP now and her blood gasses have almost returned to normal. They are happy at the moment to leave her over night and hope that by the morning the Drug has slowed her heart down enough to override it.
The consultant is adamant that I shouldn't consider today as a set back. He believes that her coming off the ventilator is a huge step in the right direction and her pacing is something we have to tweak and get right for her.
But she's not his Daughter.