The whole thing was bigger than Ben Hur! I became very grateful that I live in Australia, where the type of care that was offered to Georgia was available to her. As she was still a patient of the SCN, she had to be transported from Frankston to RCH (about an hours drive) by ambulance, and she had to have a dedicated SCN nurse with her.
How to transport her was also a concern. It was quite funny, as we waited to go the next morning, to see two ambulances officers walk into the nursery with a gurney, and an infant car seat. We strapped her into the seat, and then the seat was secured to the gurney. It looked very funny, and very cute (if I could work out how to get photo's into a blog post, I would put a pic in..). Off we went to the hospital, accompanied by Barbie, our special care nurse that had been bought in for the day.
It struck me how quickly things can start to seem normal. Only a few days into the journey, I felt pretty much ok, the tears had dried up to a degree (though there were of course to be many more), and I had totally forgotten a time that I ever expected to have a normal baby. Barbie was an American, and absolutely hilarious, and the two ambo's were great fun too. We laughed, all the way down to the hospital. Yes, LAUGHED.
As Georgie was wheeled into the eye clinic, I saw there were what seemed to be hundreds of people there. I thought we must be in for the long haul, but as we had come by ambulance, we managed to bypass all of this. I can't tell you how many times over the years that have followed that I wish I could magically bypass that two to three hour wait, again!
They put us in an examination room, and lots of people came parading through to see Georgia. Obviously it was a case like some of them had not seen before. Cataracts are something that can occur in children and babies with Down syndrome, but to be born with a set this bad occurs in less than 1% of kids with Downs.
Finally the chief arrived to examine her, and tell us the plan. By this stage, Gaz had arrived with the girls, and it was a regular Watson family outing. Our eye doctor, Mr Elder, took one look at the scene, and called for someone to take the other girls to the Starlight Room. They thought it was Christmas (hey, having a disabled sister is not going to be so bad, we get to to the Starlight Room, and get to have Macca's for lunch!)
Despite our unexpected cheerful moods, what he had to tell us was sobering. He said the optimum time for cataract surgery was at 6 weeks or age, but gestation played a part in this, so as Georgia had been born late, he would do the operation at 5 weeks old. He told us that in her left eye, he could see behind the cataract, and the eye structure looked healthy, so he felt reasonably confident that she would have vision out of that eye once the cataract was removed. The right eye was another matter, he said that the cataract was so thick that he was unable to see the eye behind it, and therefore did not know whether there would be vision out of that eye at all. Nothing scarier than the great unknown.
The surgery date was made, and we returned to the SCN, where I said a fond farewell to Barbie. She said that she didn't expect that when she got called in for the shift that day that it was going to be the funnest day ever, and I said it was rather un-expected for me, too. She was ace. Right after she left, one of the nurses came over and asked me what did I think of Bobbie? "Who's Bobbie?" I asked, confused. That's right, Barbie was actually Bobbie, and I had called her Barbie all day. She didn't seem to mind, and never corrected me. I guess she is used to it, as Bobbie really does sound like Barbie when said with a thick American accent!
A few days later, when Georgie was 10 days old, we were released from the SCN. Melbourne was in the grip of a heatwave, and even being mid March. the day she was released was 40- degrees. I'll never forget what a happy day it was, though, finally we were taking her home. When we got home, we did the Watson tradition, of taking her to all the rooms in the house, and introducing her to them. She didn't see any of them of course, but she seemed well pleased to be there, and settled in happily. She was a very relaxed, cruisy little baby, so easy to look after, so very easy to love. I think the first night home was the best nights sleep I ever had, with her in the bassinette beside me, where she belonged.
The weeks that followed were....ok. Nice even. Kind of normal, but with constant reminders that things were not. There was an appointment to have a heart echo done, to find the cause of the murmur (it was found to be pulmonary stenosis - a narrowing of the pipe between the heart and lungs, I think.....? But a mild case, and one that she was expected to grow out of my age 5, without any problems at all). Another trip to RCH to see an oncologist with regards to the platelets, which were at this stage on the rise. He confirmed that she did not have leukaemia, and I just looked at him in astonishment. Of course she doesn't have leukaemia, I said, it was never in question? He said that I was there as he was the one that liaised with the SCN during Georgia's stay there, with regard to the platelets, and because there were one or two blood tests where her white cells also showed some abnormalities, they did indeed think that she had leukaemia! No one had told me that, they told me not to worry that I was seeing an oncologist, a TERRIFYING word, as they were also blood specialists and didn't just deal in cancer, but also blood disorders. To this day, I don't know whether to be glad, or angry that I didn't know...but it was certainly a great relief. On the way out, we ran into one of Gaz's old fishing mates, coming in. His 3yo son HAD been diagnosed with leukaemia the week before, and they were there to discuss chemo. Nothing like that sort of thing to put everything into perspective.
Outside of all these appointments, I carried on as normal. I took the kids to daycare, and kinder, drank coffee with friends, drank wine with friends, laughed, cooked, cleaned and bottle washed. Came to grips with strapping 4 kids into the car, and taking them to the shops. Gaz and I both cried a lot in the first 10 days, but I can honestly say that was pretty much it. Not much more time, or heartbreak was lost on the fact that she had Down syndrome (some tears were spilled about things related to it, of course, but not the actual DS itself).
Quite a few friends said to me in the first weeks that I just looked so...normal. Like a happy, if somewhat frazzled mother of four would look. There was quite a lot of concern expressed that I was internalising it somehow, and it was all going to come out in some big rush, a breakdown. I said that I didn't think so, I wasn't in any kind of denial, and crazy as it might sound, I used to shrug, and say, "it's just Down syndrome". I know it is not a trivial thing, and I didn't want to seem flippant, but at the same time, that is how I felt. So many worse things could have happened. I could have lost her at birth, she could have cancer, so many terrible things, so much more terrible than this could have happened. To me, she was a baby, there to be enjoyed, my very last baby, and I didn't want to lose any of her babyhood grieving, as it was time that I would never get back. And to lose it to something that could not be changed..would have been such a waste. Soon, everyone accepted that this was just....me. Being who I am.
Finally the morning of her eye surgery was upon us. As you would imagine, not much sleep was had by either of us the night before. We left the other kids with family, and checked in at the hospital at 7am. Georgie was the youngest patient, and they usually do them in order of age, so there was very little delay, we saw the nurse and anaesthetic doctor and then they were wheeling us into the little room beside the operating theatre. Mr Elder came out to talk to us, and I was scared then, very scared, and I did cry. Georgie was dressed in a tiny hospital gown, and she looked adorable, and I just loved her SO MUCH. How could I hand my five week baby, little bigger than a newborn, over for a surgeon to operate on her EYES?
I asked Mr Elder whether we would be able to tell straight away if she could see? He said that she would not be able to see a lot anyway, as she would not no lenses (they would come away in the operation as the cataracts were stuck to them), and she would be left with a big vision impairment, but he said yes, we might see some difference in the way she used her eyes, which up to this point had just floated around, obviously not fixing on anything, as there was nothing to see. To this day, she had never looked at me, and that was one lingering sadness that I hoped desperately to see change.
Despite how scary it was, the operation was quite simple, and not expected to take long. We should be able to see her in 1.5 to 2 hours. It seemed like a lifetime, but we learned while sitting in the waiting room just off the operating theatre, reserved for parents waiting for their kids to come out of surgery, that it was not. We met other parents who were waiting for kids to have tumours removed, open heart surgery, for intestines that had sitting outside their children's bellies when they were born, to be put back inside. Operations that would take hours, and hours, sometimes whole days. I don't know how you would cope with that :-(
We were paged after just over two hours, to go to recovery to see her. I don't think I have ever sprung out of a chair that quickly. We walked (ran!) into recovery, and saw that her eyes were patched, as Mr Elder said they might be initially. The nurses re-assured us that the patches would not need to be on for long, and we were sent up to a ward to spend the night.
There, I gained a little more perspective, if I needed it. We were just in a general ward, not a specialised eye ward. We shared with two other patients, one a nine year old girl who was incapable of doing anything for herself, blind, unable to walk, needing to be fed. She had severe epilepsy, but her mother insisted that she had been born normal, and something had happened to her during her first immunisations...like a light had gone out, she said. The other was a little boy of 11 who had been riding his skateboard in the street outside his home, when a car had knocked him over, and he had a severe brain injury that would see him require care for the rest of his life. You can't look at what these parents were going through, and see Down syndrome for any more than what it is. Georgia's life ahead was filled with potential. Everything was going to be delayed, but nothing was deemed impossible. She would walk, talk, toilet train, feed herself, and have a really good quality of life. This other little girls brain was so damaged from hundreds of epileptic seizures a day that little more was possible for her than what had already been achieved. And this little boy, 11 years of learning, achieving, potential, all stolen in a split second.
The rest of the day was very peaceful. Georgie didn't seem in any particular discomfort, though she didn't like them putting the drops in. As they peeled back the patches I could see that her eyes looked pretty rough, like she had a bad case of conjunctivitis.
The next day we sat around waiting for news about whether we could be discharged as expected, as that day was my nieces wedding, and my eldest daughter was going to be flower girl! Mr Elder had already cleared us to go as long as there were no complications, and we kept her away from dust and out of direct sunlight. I was terrified something was going to happen to delay us - it was very nerve-wracking! Finally we were cleared to go, and as she was due for a feed, the nurse said she would get her a bottle, as we had a long drive ahead of us. In the meantime, she took off the patches, and washed her eyes in a little saline.
When she returned with the bottle, I picked up Georgie, and sat down to feed her. As I put the bottle into her mouth, she looked at me, almost as though she was locking eyes with me, and stayed that way through the whole bottle. I burst into tears, and said she can see, she can SEE. I didn't take my eyes off her the whole time, and my tears fell onto her face while she was drinking. There was not a dry eye in the ward, not a nurse, not another parent, all crowded round, watching a baby, see her mother for the very first time.
