Sunday, September 21, 2008

Another update


His eyes say it all, the hand is comforting but not comforting enough.
Another weekend has passed and other chance to catch up on the 'Joel Chronicles'. He is a rascal! Last night he pulled his NG tube out so we ended up at the hospital today for a new one. Unfortunately the silk one hadn't arrived so he has another pvc one. New tube on the other cheek They did all the things they were going to do tomorrow. He is now 8 lb 3 oz but sadly he has only put on 2 oz in a whole week which is not good enough and he is moving further away from the acceptable line on the graph. So, we now have to double the amount of calorie rich milk he is getting through his tube. I also may need to breast feed him every 2 hours and express in between, ( I may not go out much!) His respiration rate is back up at the high end of the acceptable boundary which again is not great! The plan now is to see how he goes with this and review next Monday when he will get the silk tube. ( We don't want to go back again tomorrow for the the tube as he had to have a new one today and we don't want to hassle Joel two days on the trot!) We have to monitor his nappies as he is weeing a lot as part of his treatment for the heart condition ( medicine to reduce fluid,) but this causes his bowels to struggle.


We really do love him... he is such a great kid!

He has found his voice and his smiles (ish)

Not brilliant news all round. We were told today that it looks like the hole is not closing so surgery seems to be the only option. We don't have that from the cardiologist and he needs the echo scan to clarify, but on face value looking at the factors we have, it looks like surgery! Sad.On a happier note Joel is doing lots of cool things. Smiles, talking/noise making, moving his arms and generally being a great baby. He is loosing his hair and getting strange tufts here and there. What a cool cookie. On the whole it's all smiles here and Emily sends smiles to you all. (her teeth are all through!)


And one from Joel too!

2 comments:

hendricks said...

Joel and Emily are looking great. Soren is praying for baby Joel every night and asking about him. Thinking about all four of you lots!

Sara

esty said...

Thanks for all the updates. Joel looks so cute and Emily is such a loving sister! You are all in our thoughts and prayers. Much love E & E x