Meadow update from 1st Aug: Well where are we... On Tuesday we got rehoused in to a new accommodation where meadows big brother teddy is aloud to stay with us, although he wont talk/touch or do anything with her we can tell she already loves him to pieces everytime she hears his voice she looks around for him and gives a big smile and even though he is nervous around her 1. because he hates hospitals and 2. because he is unsure on all thats going on he still helps out when he can by helping to move the cables when me or her daddy get her out of the cot and by passing us her blankets or toys. All the doctors and nurses are in love with not only meadow but teddy aswell at some points I start to wonder who is the actual patient with some of the head doctors coming to meadows bed just to talk or pick teddy up, which he isnt pleased by even though he loves the attention (very shy). Meadow is continuing to do well with having 12 hourly cpapp breaks everyday, she has managed to stay off of her heart medication and finally got to the big 3.5kg which is all weight no fluid this time. Spoke to the head consultant who told us that we still have a way to go yet but hopefully we will get her home for a while before she goes in for her second surgery (the glenn) although I think all the nurses have now decided that they feel sorry for us when we do eventually get her home as our little star has been spoilt so much getting lots of cuddles love and attention from them all that she hates being put down and crys because she always wants someone to interact with her, think she is definitely going to be a 24 hour attention child lol so could be fun. One of the nurses turned round and said we may need to get a baby sling so we can carry her around whilst still doing the houee work lol the head consultant just looked and laughed as if to say good luck to you both. Meadow is going to be 4 months in a few weeks time and still has never been bottle fed, due to that she is going to have trouble feeding and therefore will be coming home with an ng tube which me and her daddy are going to be trained in how to feed her, its going to be a long slow process and we are going to be in contact with the dietician for her to have a certain feed which will be made up to suit her. I asked the nurse if meadow will at least be home before Christmas she said yeah and looked at me as if to say it will be a good while before then, the only way she will be in hospital at Christmas is if she is to have her glenn procedure but the chances of that happening at the moment isnt likely. Today meadows milk was uped to 20mls per hour and aslong as she tolerates it then it will go up once again to 23mls. We went to see meadow last night from having a visit back to our own home in Hertfordshire and she wasnt in her bed space, we finally found her back in her old bed bed space 12 it felt like being home after she spent 11 weeks in there back to her own bedroom. Its nice to be back close to the doctors space at least we know she is well looked after there not as though we had any concerns in the first place as the nurses at GOSH are so nice its like they have adopted meadow, we have nurses we havent even had before and dont even no there name come to see her and say how well she is doing. Our little star is definitely a fighter she has done so so well and proved so many people wrong. Meadow we love you so much keep doing mummy and daddy proud ☆ xxx
Posted on: Sun, 03 Aug 2014 19:28:22 +0000
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