Coming home.

After a five week stay in hospital, it felt very scary to take this little bundle home. We had found out that same day that because of the problems with the delivery, Zak had a condition called Hypoxic Ischemic Encephalopathy stage II, or HIE. Of course, as a Mother, you want to find out as much about a diagnosis as possible, so with a hot cup of tea I went in to the conservatory and loaded up the computer. Google became enemy and best friend all in one. I needed to learn about this thing, but what I was reading filled me with fear.

HIE in blonde terms means brain damage caused by lack of oxygen. The extent of this damage was still to unfold. We constantly heard phrases like "we don't have a chrystal ball" or "no-one knows how this will affect him until he is older", and my favourite "suck it and see".

We knew quite quickly that Zak was no average baby. At 2 months old, he still hadn't managed to smile. He never looked at things and his eyes often wandered up to the top of his head. His hands were permanently fisted like he was holding a secret that in time he might choose to share. His legs would do circles like he was riding a bike, and his arms paddled.

Zak had problems with his food too. There was no way he could manage a bottle. Every meal would take 2 hours to complete, by which time it was time to start again. He vomited in dramatic style with every feed, and even stranger, he would suddenly, with no warning, throw himself backwards. You really had to be on the ball to catch him.

If he was sitting on your knee, he would be ok. He would be quiet, and between the back arching, he would be quite content. Then there was the other side to Zak. Prams, seats, beds, carseat, especially carseats, were like the electric chair to him. Just to travel 5 minutes in a car would result in this wreck of a child, covered in sweat, drool, and often blood from biting his tongue. He would arch constantly, turning redder and redder in the face, so much so that if we reached our destination, the relief of all that pressure would result in a vomit decorated car. We never thought it would end. We tried everything but could see no end to this despare.

All of these things seemed to be pointing us in a very frighteneing direction. Then one morning our fears were realised. One of Zaks letters from the consultant he now saw regularly, had a short list of 'problems'. It seemed to jump off the page and slap us square on the face, 'evolving Cerebral Palsy'.

Suddenly things started to piece together. All his funny movements, his struggling with food, no eye contact and the distinct lack of a smile.

We fought for what seemed like a life time to get food in him, but with every success came the inevitable vomit. Nothing would stay down. Doctors said he has GORG or gastro osophageal reflux disease. We spent a few weeks in hospital trying to figure out what to do, and somewhere along the way my hubby came up with the idea that it might have more to do with his milk than the reflux. We changed to a dairy free milk, and withing 3 days Zak went from vomiting every half hour, to just once or twice a day. We left hospital feeling that we had conquered our first major hurdle, it was great!

After a few weeks on this new milk, we really felt like we were seeing some success, so it was baffling to realise that Zak had stopped gaining weight. He was eating better, even trying little bits of food from a spoon, which infact he managed better than the bottles. It didn't make any sense.

We were introduced to some more people, who in time would become a huge, permanent part of our lives. We met Evelyn, our physiotherapist, and Elspeth out Community Care Nurse. They are two of the nicest people you could meet. Physio explained that Zaks muscles are very stiff and are on the go 24 hours a day. We imagined how difficult it must be to hold a tensed muscle for any length of time, with no option to relax. The amount of calories it would take to sustain that amount of muscle stiffness was way more than we could get in him. But we were not going to give up and tried everything we could to help him.