Rose newborn and transferred
to hospital nr 2.
... not much hope for our girl. For the many. By looking at how severely injured her brain must be. To us she was absolutley showing in every way that she was here to live her life, from the beginning. Despite what happened and the very bad condition she was in. We felt totally trusting and resting with her in what was. What she needed to go through was painful to watch, and he longing for her close all the time was immeasurable. But we were held firmly and lovingly in the warm arms of life. We still are.
When Ros was 5 hours old she was transferred to her 2nd hospital to undergo hypothermia.
And much else. Ros was in a coma.
Stringed to cabels and needels and monitors and beepers and medications she was almost impossible to move to my arms after the three-day hypothermia. But we did it. She was warmed up in my arms, gradually to 37'C from 33'C on her 4th night in life. What a gift! To finally sit with our babygirl close to my heart.
After 6 days she needed no more oxygen-help. She could manage on her own. Miracle-girl. For the first time we could see her whole face since the first dramatic seconds at birth, as the last little mask over her nose was taken away. Pretty baby... Our hearts singing the sweetest songs and celebrating her coming closer and closer to us.
The next day we had to swap hospitals again, just as she was 'getting better'and gaining trust in being here and overcoming the greatest threats. It was promised that it would be very much better for her. Even though every one knew how extremely sensitive this 1 week old baby was right then...
She had difficult seizures on the way in the ambulance that again, we were not allowed to join.
What a chaos for her and us to change places and people. Not many days went by until we were more or less told that a child does not survive this a severe injury of the brain.
And even without saying it we felt noone could understand our immense love and happiness for our child. Our miracle-girl! The lack of comprehension from the doctors giving the doom that we should not expect so much and the absolute thick darkness covering our meetings, from their part was impossible to understand.
I felt like a prisoner and thought that maybe they would never give me 'my baby' back, but lock her up as a national belonging, as she was not a real being needing to be with her mummy, so hurt as she was... Anyways who really thinks that such a hurt child does have any joy or comprehension? Don't they all become dumb? (The most common belief...)
With all examinations done, all money they could get used and all diagnoses made we could suddenly go home. No problem. I thought it had all been a bad joke. What was the total change from one day to another? Didn't she require all the surveillance now suddenly? It had sounded like an uthopia to leave the hospital the very day before we were 'given freedom'. That's how I felt.
~~Home again at last!!~~
It took another 6 months until I dared to really start working' with Ros. Until then she was far to ill. Difficult seizures and a very vulnerable state in every way. But such a joy to be with this sweet and brave girl.
My investigations for alternative anti-epileptic medication started almost at once. Trying to find rainforest-remedies is not an easy task and probably very forbidden. I read all and more about the life-threatening medications she was on, and felt then helpless as I knew how adictive they were and how dangerous it would be to take her off them. Trapped in medications, that according to what I felt and understood (and could see, as she was endlessly tired and could not take in life around her, being so sedated) would rather make her state worse. She was still not so conscious. Sleeping, sleeping, sleeping. And when awake in seizures. Lots of seizures.
We were told to give her a third kind of anti-cunvulsant, to take the 'dangerous seizures' away. We said nonono. Not another one, and knowing that it was a kind that often gave visual problems and blindness. We were knowing something else.
When Ros was one year old I had taken off one of her anti-convulsant medications with a very gradual detoxification proposed by her doctor, as the seizures were so aggressive and conected to the times when medication given.
That medication was suggested more than twenty years ago not being given to young children due to the increased mortality in the group of children taking it, and some other nasty side-effects. I still can not understand how it could have been suggested for anything other than very short term use.
The medication Ros is still on is on its way out too. We are seeing a growing in her alertness already and have bigger contact over all.
Blessings. The mama.
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