22nd July 2009 – 28th September 2009
Eve was born beautiful and strong, bringing the most amazing joy into our lives.
My pregnancy was faultless and her delivery was a wonderful experience.
For almost four weeks we were in a dream, we could not believe how lucky and blessed we were.
Eve we noticed had stopped putting her hands in her mouth and stopped trying to get her hands out of her blankets at 3 weeks of age.
I remember thinking she seemed lethargic a few days on and off at this time.
On a busy day just before Eve turned 4 weeks old when we went to our first mothers group meeting, which she slept through and then off to an appointment with the health nurse, which she was still sleeping through, the nurse and I both noticed on undressing Eve that she was very flaccid and her arms and legs were limp hanging by her sides.
I began to panic immediately and the nurse sent us off to the hospital emergency telling me she thought Eve may have a bad infection of some sort.
The next hours were terrifying, but we never could have imagined just how bad things were.
Nobody could tell us what was wrong, tests came back negative. Our Paediatrician handed us over to the Neurology department overnight and by 8am the next morning I was face to face with the Head Neurologist and he was telling me that he thought Eve had a genetic condition that I had never heard of and that if he was right Eve would not be with us for long. He was brutally honest and he knew what he was talking about. He knew we needed to hear what he was saying. Eve’s condition was quite severe.
This was the worst day of our lives. We will always carry that hopeless, unendurable pain in our hearts, heavy and constant. It takes my breath away still.
We went home with our precious little girl to await the results of the SMA test .In our hearts we knew she had SMA but we were holding onto a tiny glimmer of hope that there was some mistake. One week later we got the results, by this time the SMA symptoms were very unmistakable. We had read up on every piece of information possible and we were preparing ourselves for the hard road ahead.
Our love got stronger and stronger. We could see her love for us in her eyes and it made our hearts sing and break at the same time.
When Eve was 5 weeks old we had to go to the hospital to see about her feeding difficulty. She was unable to take the fast flow of breast milk and was choking and getting upset as she fed. I had to feed more slowly.
When Eve was 6 weeks old we were back again to the hospital. Eve was not able to feed at all this time and I had been up all night trying to get some milk into her, I knew it was time for the nasal feeding tube. This was another horrible day. We got home with all the equipment and the tube installed. Eve and I both spent a very upsetting few days missing breast feeding. All I wanted to do was feed my baby and calm her down; she couldn’t understand why she couldn’t have what she wanted. We both got used to it somehow.
After Eve got the tube she picked up considerably. This was a great week. She smiled for us, I will never forget Jason and I sitting on the couch together as she grinned away at us, she was enjoying things like her bath and we watched her develop, she also got chubby and so cute.
We had a bitter sweet Fathers Day.
When Eve was 8 weeks old she started to go downhill. We existed in our own world which revolved around her and we miss it so much.
We were able to get a suction machine to help her with the saliva that she was unable to swallow. She was having trouble staying asleep. We had to prop her on her side always so that she didn’t choke on her saliva running down her throat. She wanted her dummy in constantly; I think it helped her feel safe. Our love for each other as a family was stronger and stronger. She was happy as long as we were there.
On a Sunday morning when she was 9 and a half weeks old Eve and I were walking around the house together after Jason and I taking turns sleeping in a bed in her room beside her.
We were talking and enjoying being together in the quiet waiting for Daddy to wake up and do the feed with us. I will never forget this peaceful special moment in time. She had cried so much in the last week, I think she was just uncomfortable and stiff, a bit like an old person as they get closer the end. But this Sunday morning she was content for just a few hours with Mummy. We were spending our last moments at home.
By about 10am we knew she was near the end. We could see it in her face. She was pale and sad. Our hearts were splitting in two; we went to the hospital with Eve on my lap lying on the pillow she had spent the last weeks laying on. She couldn’t go in the capsule, because she would choke on her back, we knew it was our last trip. Heaven help any Policeman if they had tried to pull us over for having her out of her seat.
The next 24 hours we spent with her in hospital. Eve passed away with us holding her tight, we never left her side.
Coming home without her was heartbreaking. Our home and our lives are empty without her.
Jason and I know we very much want to have a brother or sister for Eve, but we also know it will be a hard journey. We are both carrier’s of the SMA gene and this complicates the joy of getting pregnant.
We would never take back a second of what we had with our beautiful daughter and I truly believe she was here for an important reason. We learnt so much from her and even though our memories are tinged with sadness, they are special and wonderful.
Reading the stories from the SMA Websites helped us during this time and is still helping us come to terms now. We will always support the association and live in hope for a cure for SMA sufferers.
Knowing there are many little angels for Eve to be with is a thought that helps us as well as saddens us. SMA is so devastating and so much more common than we knew.
We had amazing care and support from the John Hunter Hospital in Newcastle over these weeks, many of the nurses and Doctors went above and beyond what we ever could have asked for. We are eternally grateful for the respect and love they showed for our little girl and for us. She truly charmed them all and it helps us to know that they will also never forget her.
She will live on always in a special part of our hearts and in our memories, forever a tiny chubby and beautiful angel.
Eve Jasmine 22 July 2009 – 28 September 2009