First, a little comparison. Timmy as we were getting ready to leave the hospital, weighing about 9 1/2 pounds.
And Timmy this week, weighing in at 12 1/2 pounds.
We have truly been blessed.
A pretty easy week. It seems like it has been a pretty easy week. Until I think back through it. Over the weekend (Yes, Christmas weekend) we experienced some major leakage from the stoma (hole into Timmy's stomach for the g-tube). So much formula/breast milk was leaking out with stomach acid in it that it was causing skin problems and sores on the surface of Timmy's stomach. We have people we can call, but were unsure of who, and didn't want to be a bother unless we needed to. We eventually decided on adjusting Timmy's feed rate so his stomach wasn't so full, and to reduce the amount of gas-x we were giving him. Gas-x seemed to help when we first started giving it, but it now seems like it was part of the problem. The feed rate we changed so that he is getting continuous feeds with no time off the pump, but at a lower rate. It works out to a slight reduction in calories, but he has been gaining half a pound a week, so it isn't harming him. (He is still gaining).
As the g-tube problem was coming to an end, it was hard not to notice Timmy's color was not as good as normal. Blueish fingers, even a bit of blue coloring in his face. We were told that is what a normal child in Timmy's condition looks like, but it is still abnormal for him. We weren't 'worried' about it, but it was another thing to cause concern and to keep an eye on. Happily, his normal coloring returned after a couple of days.
As the g-tube problem was coming to an end, it was hard not to notice Timmy's color was not as good as normal. Blueish fingers, even a bit of blue coloring in his face. We were told that is what a normal child in Timmy's condition looks like, but it is still abnormal for him. We weren't 'worried' about it, but it was another thing to cause concern and to keep an eye on. Happily, his normal coloring returned after a couple of days.
See, an easy week!
He has been reaching out and playing with things more. He loves to sit up and hold up his head himself. And he enjoys 'talking' and 'singing' to let us know how he is doing.
Even as we grow more accustomed to our new normal, it keeps changing. But some things don't change. We all love our little Timmy. We all have to work together to make the days work. And we are all grateful that he continues to grow and develop at his unique pace.
It's good to see he's growing! I remember for a while he was really struggling to gain anything. What has made the difference in his gain? We continue to pray for Timmy and his family.
ReplyDeleteWe're not 100% sure, but we think there are 2 reasons. 1) he is home and getting loved on more. 2) all our kids have gone through cycles of growing and not growing, he may have been at a stage where he just wasn't putting on much weight.
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