We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
Saturday, August 7, 2010
Quick weight loss!
Lilly's weight has dropped very quickly in the last few days from 7.79 kilos to 7.1 kilos in 2 days! i finally found a nutritionist that would listen to my concerns and we are starting her on Canola oil with her bottles, 1cc per 2 oz. We are also going to try mixing the Pediasure with some Coconut milk to see if this helps at all. Wish us luck! I will keep you posted as the weekend goes on.
Thursday, August 5, 2010
What a Month!
July was absolutely crazy! We have now moved to our new home across the field as of last weekend. From a 3 bedroom to a 5 bedroom plus 2 office rooms, yeah now I need to go shopping to fill this house!
Our new address is: E7601 1400th Ave
New Auburn, WI 54757.
Thank you to Paul's parents who has stuck by us and finished the house! We have had many nights with few hours of sleep, while visions of trim guns danced in our heads! Dylan helped us paint the new house and is continuing to help us put up the tin on the "old house" shed.
The kids are enjoying the room and I find it amusing when Dylan chases Lilly around downstairs and then Paul chases Dylan upstairs. Lilly really is putting on the miles walking back and forth across the house. Her balance is much better every day.
We have had a big scare this past Sunday. We had laid the kids down for bed and sat down to watch a movie. Around 11pm Lilly was screaming and Paul had gone up to find a nuk for her. She had the feeding bag tube wrapped around her neck three times and also around her leg. Needless to say, We have not used the G-tube since.
I have talked with Lilly's GI doctor who is giving her 6 weeks to get her weight in control otherwise we will go back to the g-tube. Our neighbors have suggested coconut milk, as if is high in good fats and other vitamins and minerals as well. Pedisure also has a 1.5 calorie drink coming out in a couple weeks. So instead of 1 calorie per cc it will be 1.5 per cc; we are not sure where to get it yet but this is another option.
August will be a busy month as well for us. In two weeks we have a Herma Heart Picnic at the Milwaukee Zoo. We are looking forward to seeing all of our heart friends and to visit at the zoo.
Then towards the end of the month, we are making another trip to Nebraska for my brother-in-laws wedding. Paul and Dylan are so excited to see Chris and Brandi. Me, well, I am too, but I am not looking forward to to long drive!
My job is going wonderful and we are possibly having people work from home starting next month. This means I wouldn't need to drive an hour to work and back.
Other than that things are great. Pray for our heart families, and a special prayer for Caden and his baby sibling coming soon- don't scare Mom and Dad too much Caden!!
Thank you for stopping to check in on us! Have a great day!
Our new address is: E7601 1400th Ave
New Auburn, WI 54757.
Thank you to Paul's parents who has stuck by us and finished the house! We have had many nights with few hours of sleep, while visions of trim guns danced in our heads! Dylan helped us paint the new house and is continuing to help us put up the tin on the "old house" shed.
The kids are enjoying the room and I find it amusing when Dylan chases Lilly around downstairs and then Paul chases Dylan upstairs. Lilly really is putting on the miles walking back and forth across the house. Her balance is much better every day.
We have had a big scare this past Sunday. We had laid the kids down for bed and sat down to watch a movie. Around 11pm Lilly was screaming and Paul had gone up to find a nuk for her. She had the feeding bag tube wrapped around her neck three times and also around her leg. Needless to say, We have not used the G-tube since.
I have talked with Lilly's GI doctor who is giving her 6 weeks to get her weight in control otherwise we will go back to the g-tube. Our neighbors have suggested coconut milk, as if is high in good fats and other vitamins and minerals as well. Pedisure also has a 1.5 calorie drink coming out in a couple weeks. So instead of 1 calorie per cc it will be 1.5 per cc; we are not sure where to get it yet but this is another option.
August will be a busy month as well for us. In two weeks we have a Herma Heart Picnic at the Milwaukee Zoo. We are looking forward to seeing all of our heart friends and to visit at the zoo.
Then towards the end of the month, we are making another trip to Nebraska for my brother-in-laws wedding. Paul and Dylan are so excited to see Chris and Brandi. Me, well, I am too, but I am not looking forward to to long drive!
My job is going wonderful and we are possibly having people work from home starting next month. This means I wouldn't need to drive an hour to work and back.
Other than that things are great. Pray for our heart families, and a special prayer for Caden and his baby sibling coming soon- don't scare Mom and Dad too much Caden!!
Thank you for stopping to check in on us! Have a great day!
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