13 days and counting until Lily's cardio consult. Try as I may to bump the date closer, that was a no go. Dr.C is out on vacation until the 4th, and we can not forgo the consult, which to me is beyond frustrating. Especially when we already discussed what was going to be happening last year, right after Lily's 3rd OHS. When we talked we all knew what this 4th surgery would bring, and what would be happening. Even Dr.Rhee said, we know what needs to be done, we just need a date now. Try as I may, I could not get out of the consult, ugh. So like I said, 13 days, 13 days until we sit and discuss the fine details of the surgery, the survival odds, the recovery, what our future will look like afterward. Nothing I haven't already heard, but must hear again in order to get a date. I will be pushing for surgery by the end of that week. I know some may think we are crazy for pushing, but I am a little unsettled up here in Anthem, 30-45 mins away from St.Joes, and if he valve was to blow from the pressure, well, we would have no chance of her making it. So I am not at ease up here. From everything I have read and cross referenced, any gradient over 100 is sever and needs surgery as soon as possible. Her heart is full functioning right now, minus the valve, and I would like to keep it that way. I don't want it working any harder then it needs to.
I am Lily's best advocate, I can start seeing little signs of exhaustion. Where her eyes don't have the twinkle and brilliant sparkle to them. They seem dull, along with her personality when she gets like that. But they are so little, unless you know her, you won't catch it. If I were to take her in for it, they would look at me like I was crazy. But like Chris said, you can tell something is wrong, this isn't how our daughter acts. So I may have to become one of those parents the doctors all hate, the ones where they go, "It's her again." I have been real good about it, up until now. Now mama bear has come out to play and will do anything and everything needed to get this show on the road.
on the upside of all of this chaos....Lily went pee pee in the potty. My 21 month old little girl, came up to me, pointed at her diaper and then pointed to the bathroom. I asked her if she wanted a new diaper and she said no, but she grabbed my hand and took me to the bathroom. Once there I asked her if she needed to go pee pee and she said, "yeah." She lifted her dress so I could take her diaper off. I put her up on the potty and told her this is where big girls go pee pee. She kept pointing towards her's and I told her yes, that was her pee pee. I didn't actually expect anything of it, but just let her sit there. Well, low and behold, i hear, tinkle tinkle tinkle. She looked at me and smiled, but all the while she held onto the potty for dear life. I clapped for her and gave her a hug when I got her down. It is unfortunate she shows interest now, because we will regress because of this surgery. After her second birthday here in Feb, I do plan on getting her, her own little potty. I am determined to have her potty trained by 2 1/2 like I did with the boys....... on can hope!!
Love Hugs and Blessings
Jenna
I am Lily's best advocate, I can start seeing little signs of exhaustion. Where her eyes don't have the twinkle and brilliant sparkle to them. They seem dull, along with her personality when she gets like that. But they are so little, unless you know her, you won't catch it. If I were to take her in for it, they would look at me like I was crazy. But like Chris said, you can tell something is wrong, this isn't how our daughter acts. So I may have to become one of those parents the doctors all hate, the ones where they go, "It's her again." I have been real good about it, up until now. Now mama bear has come out to play and will do anything and everything needed to get this show on the road.
on the upside of all of this chaos....Lily went pee pee in the potty. My 21 month old little girl, came up to me, pointed at her diaper and then pointed to the bathroom. I asked her if she wanted a new diaper and she said no, but she grabbed my hand and took me to the bathroom. Once there I asked her if she needed to go pee pee and she said, "yeah." She lifted her dress so I could take her diaper off. I put her up on the potty and told her this is where big girls go pee pee. She kept pointing towards her's and I told her yes, that was her pee pee. I didn't actually expect anything of it, but just let her sit there. Well, low and behold, i hear, tinkle tinkle tinkle. She looked at me and smiled, but all the while she held onto the potty for dear life. I clapped for her and gave her a hug when I got her down. It is unfortunate she shows interest now, because we will regress because of this surgery. After her second birthday here in Feb, I do plan on getting her, her own little potty. I am determined to have her potty trained by 2 1/2 like I did with the boys....... on can hope!!
Love Hugs and Blessings
Jenna
4 comments:
Oh wow!! go Lily!! that is awesome
Glad to hear about Lily and the potty! It's exciting both for momma and baby I know.
And you don't worry about being annoying to the docs and office staff, your daughters heart and health is on the line, call all you want until you get results. Way to go for being a mama bear for your precious cub. I would be nervous too in your same situation. Praying for you everything turns out great!
thinking about u with the surgery consult coming up.. It'll be a long wait. I hope they listen to you.. you always know best. how's she been lately?
Hi there, you can get those leggings at babylegs.com or etsy. Babylegs.com is a little more expensive, etsy is way cheaper and usually has free shipping. If you can't find them on etsy let me know and I'll search for the link. I know its in one of my old blog posts.
They are a lifesavor for hospital stays, the one place you can put clothes on (usually)
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