Zebra Boy 13 months old

Love the new Zebra suit? comes with matching nappy. OH SO CUTE!

1 year since coming home

25th May 2010 1 year since Noah came home from hospital and ironically we were back again today to see his pediatrician Dr Conway. His kidney scan from last week had come back clear. His brain scan had showed increase swelling of the ventricles and lining. Diagnosing him with periventricular leukomalacia or PVT in other words brain injury of prem babies. His head has swollen to double his size and is now a worry about needing a shunt to decrease the fluid on the brain before is causes more damage. He is due for another scan in 3 months and head measurements. With his fontanel open will mean the brain can swell more and not make huge problems but once that is shut can be life threatening so need to follow it up. The scan showed increase ventricle size and extra ventricle swelling and ‘white matter’ dead spot lining. Also that this is not related to PPS is a prem baby thing. That makes me feel worse! Due to the structure of the brain and Noah's PPS means could be due to structural abnormalities which I kind of hope. Its suppose to affect his learning but his motor skills seem fine so far but I guess it is just a waiting game. Conway also referred Noah onto respiratory clinic for his breathing issues. They will check his adenoids and might refer to CPAP for sleeping to help with his breathing at night and snoring. Another referral also went out to Endocrine. They will look into hormones and see if growth hormones will help Noah. Genetic saw hi yesterday and for him to be diagnosed the blood test causes 1400Euro or $2000AUD we can pay for it ourselves or apply for a grant to get the WCH to pay. This would mean tho if I was to fall pregnant again we would test the baby to see if it had PPS too. This would also confirm both Aaron and I are carries of the syndrome. Not sure what were going to do have till next week to work it out. He has also been seen by speech pathology this week to help with his eating. Her ideas seem pretty straight forward so will try them. As for his lack of talking I swear he said ‘Mum’ today. They think the brain injury might affect his speech so got games and songs to sing to him. I don’t think the lady got the fact there are 4 kids in the house he is very stimulated with noise. He is going to have another hearing test later. So lots more happening really hoping all works out. The idea my baby has a brain injury scares me even more that the fluid isn’t reducing but increasing.

ANZAC #1

Noah was named after his Great Great Grandfather Charles Joseph Crabb. Every ANZAC since 1998 with his Grandfather Medals Aaron has marched. For Noahs 1st birthday Nan bought him his own set (in minis) Noah walked his 1st march this year with his medals worn proud.

Noahs 1st birthday

12 months tomorrow

April 20th 2010 I cant believe tomorrow my man by turns 1, the little hairy, skinny wombat who changed every bodies life he comes into contact with. I cant believe 12 months ago I was in labour and getting ready to have a baby. So much has happened in the past 12 months. So many good times and so many bad. For us has been 18 months of crap time. Were hoping tomorrow is the start of a new year and new life. Noah will be 1. What a goal to get too. What a goal for me to get too without loosing my mind. When I reflect on the time I think of seeing him in that humid crib in SCBU 3 and how he was so tiny and so many cords on such a tiny child. I remember the hours sitting by the crib in the hospital. Meeting so many other people and their babies and their journeys and how now they are so rude Noah isn’t allowed to attend their playgroup cause he isn’t suited. Bitch! I remember the call from the NICU nurse saying Noah had stopped breathing and needed to go back on CPAP. Was a horrid day for us even worse when friends who baby was born after Noah came over with their baby. Aaron had a tutty frutty at them how could they bring their baby over when mine was in hospital struggling to live. I don’t think they will ever know that pain, but they do have a cute girl so made it easier it wasn’t a boy. I remember coming home with Noah. I refused to take photos cause I didn’t want to see the horrid feeling I had as a failure of him being away from me for 5 weeks. He was so tiny all his clothes were so huge. Was just the day before we left hospital we found out he had corneas which were not developed. We were told her had Peters Anomaly and he would be vision impaired. Was very hard to hear and took lots to get use too especially cause we could see his white eyes. But he was so perfect even tho he was so small and his eyes so imperfect. We were so lucky he was alive, we hated the tube in his nose and looked forward to showing him off like a normal baby. We would take him to the shops and die for someone to comment on him being cute not asking about the tube or his size. At this time a friend told me about Can do 4 kids an organization for VIP kids. Was great we sorced sponsorship for a fundrasiser and met Julie from Wendys. She was the only one who looked at him as a beautiful baby not a freak. He wasn’t even 2kg and she treated him like a grandson. At home we had so much fun watching him grunt and sleep. Was so special when he finally breastfed. I was pumping, breastfeeding and gavaging him every 3 hours. Was so exhausting especially as the other kids were home too Rachel was school and Jake was at child care. Noah was slow to develop and we ended up requesting more tests the found then he had more issues with his heart, brain and growth they ended up diagnosing him with Peter Plus a rare disorder with bad outcomes. Was hard to deal with especially as we saw Noah starting to develop he was feeding without the breast shield and starting to smile. We were so proud we stopped looking at him for his developmental delays but for who he was. We were so proud for each milestone. After this I started to notice my back was causing so much pain. Ended up being I had severe sciatica and needed surgery in Feb 09 and then again in March wasn’t the ideal situation and has bad side effects. Noah started to crawl and stand up by Christmas was such a goal as the brain scan showed he might have issues with his motor skills. His fine motor skills are still not fantastic but that could be from his eyes too. The anomaly started to shrink from the start and has now almost totally gone. Although his eyes look so normal he still does the freaky eyes to look over the top. Shocking for us, he can pick up a small item on the floor even find an ant but then crawls into things constantly. We wont know the degree of his loss till he is older. When Noah was 6 months old his NG tube came out was a great day for us no more pumping and no more gavage feeds. Best bit was he looked normal. We were so proud. From there he came in leaps in bounds moving around the room and interacting with us. At this time Aaron, Geoff, Mike and Paul competed in a fundraiser and raised money for Noah's charity. They met so many wonderful people. Although wasn’t the best time for me at home with Noah and alone they did have fun. In November 09 Keeley came to live with us full time. I wont go into details as is legal but since then our family has been complete. So today we sit here and remember the wonderful people who we have met and have helped us. People we never knew existed have becomes our friends. We have met other special needs children and came accept the differences of everyone and be so proud for everything. Although the year has been tough didn’t mention the car breaking at costing $6000 and the TV catching on fire nor did I mention the TV we got for Xmas or the grants we have had from charities to help us. So has been a hard year but over all we are happy and so proud of out little Man. He may not ever grow but he is our a fighting wombat