Alfie was diagnosed at my 24 week scan with a hypoplastic right ventrical,asd,vsd and critical pulmonary stenosis, because of this Alfie was going to be born early in St. Thomas's Hospital in london.
Alfie had his own plans and I went in to labour at 36 weeks, Alfie was born blue and not very well. They had to give him a drug to keep a duct in the heart open called a PDA. If the child needs too much then it can affect their breathing and Alfie had to have a lot to keep this duct open so was put on a ventilator before we could see him.
Alfie first operation was at 8 days old he was not coping so well - he had a lot of the side effects from being on the drug. The doc decided to have a PDA stent put in and he had his pulmonary artery ballooned. Alfie lost a lot of weight after the op and dropped to 4lb 8oz that is when Alfie showed the signs of feeding problems. He had an NG tube since birth it took till Alfie was 7 weeks old and about 5lb 8oz when he got out of hospital.
Alfie went home on the NG tube and he was OK (what me and my huband called OK) till he was just over 3 months old and he got a cold and ended up an oxygen for a week. We now started to have more and more people come and see him as he was very small and not gaining weight well. He was also not hitting the developmental milestones or feeding.
We got used to the fact Alfie was special and he had an MRI at 8 months old and the neurologist told us Alfie had microcephaly, he said this could mean he could be developmentally delayed and have fits (to date no fits). We thought, just add it to the pile of problems! Genetics have tested him for sydoms and genetic problems but as of yet none has been found so he is Alfie and we cope.
Alfie has been in and out of our local hospital more times then I can count: colds,virus ,oxygen, SATS sitting to low, even an ear infection and many more. When Alfie was just over 1 he had his PEG put in: it was a god send but Alfie was determined to do things his way so a few hiccups along the way entailed again. For another year his heart deteriorated and his oxygen levels got lower. He got bluer and was a real trooper, even the doctors said, how does he have so much energy with such low oxygen levels? They were sitting in the 70s and again and again Alfie ended up in our local hospital.
Two months before his 2nd birthday he had his first open heart operation he was in and out within a week. We were told though that things did not look simple for Alfie's heart and that he would need more operations. I thought things had gone too smoothly, 2 weeks after we were released and at home we took Alfie for a routine ECHO at Evelina Children's Hospital and it showed 1.6cm of fluid around his heart. So we did not go home from the ECHO. He was not showing any signs of distres until 3 days after: we were taken in and after 5 days he had to be taken as an emergency to have the 50ml of fluid drained from around his heart. We spent 10 days in Evelina, but when we were there Alfie started having shivering episodes. They are not fits but he will need an MRI again as it could be something to do with the blood flow to his brain. Alfie today has an ear infection in both ears and we are trying to deal with it at home hope it works.
Alfie can't sit, crawl, walk or talk, he can't feed himself but does eat pureed foods. He does not drink the milk. He is a happy little thing and I thank God every morning when I see his bright little face.