(Sorry I'm rambling on in this post...there is just so much on my mind and i wanted to let everyone know what was happening...so we could all continue to pray)Still at the hospital..
My MIL volunteered to stay tonight for me, so i could get things together for the upcoming surgery (we might be transferred to Dallas on Monday--we are at our local hospital) and to get out of the hospital to get some rest...and they might move up her surgery date if Lily's weight doesn't improve...she had lost weight--she was 8 lbs 14 oz at check in at the hospital..she is back up to her 9 lbs 3 oz when they weighed her again today. she still isn't eating that well. We found out from a swallow test, that she has reflux which is causing her to not want to eat...so she is on more meds for that (prevacid, which she was on before, just twice daily instead of once daily)...
I did find out that her hole is in the top of her ventricle wall...near the valves...and it is 5-6mm in size. they have her on Similac Alimentum...and she seems to be taking it okay just not fast enough...so i am preparing myself for the feeding tube to be put in soon.IMO--Lily hasn't done well since they took her IV out...or unhooked her...they didn't take it all out, in case she needs to be hooked up for fluids again. She isn't eating as well..it is taking her longer to eat the 2 oz...and she seems more tired...we'll see how she is doing when i go back at 5am.
I just have to tell you..... i really don't know how I'm going to be able to handle all this ( tears will definitely be shed in the coming weeks) ...I nearly broke down crying while they were trying to put her IV in yesterday...But if Lily can be strong, then this mommy has got to be strong too.
Love ya and i will try to keep y'all updated. Continue to pray!! and Thank you for your prayers.
My MIL volunteered to stay tonight for me, so i could get things together for the upcoming surgery (we might be transferred to Dallas on Monday--we are at our local hospital) and to get out of the hospital to get some rest...and they might move up her surgery date if Lily's weight doesn't improve...she had lost weight--she was 8 lbs 14 oz at check in at the hospital..she is back up to her 9 lbs 3 oz when they weighed her again today. she still isn't eating that well. We found out from a swallow test, that she has reflux which is causing her to not want to eat...so she is on more meds for that (prevacid, which she was on before, just twice daily instead of once daily)...
I did find out that her hole is in the top of her ventricle wall...near the valves...and it is 5-6mm in size. they have her on Similac Alimentum...and she seems to be taking it okay just not fast enough...so i am preparing myself for the feeding tube to be put in soon.IMO--Lily hasn't done well since they took her IV out...or unhooked her...they didn't take it all out, in case she needs to be hooked up for fluids again. She isn't eating as well..it is taking her longer to eat the 2 oz...and she seems more tired...we'll see how she is doing when i go back at 5am.
I just have to tell you..... i really don't know how I'm going to be able to handle all this ( tears will definitely be shed in the coming weeks) ...I nearly broke down crying while they were trying to put her IV in yesterday...But if Lily can be strong, then this mommy has got to be strong too.
Love ya and i will try to keep y'all updated. Continue to pray!! and Thank you for your prayers.
1 comment:
We continue to pray for Lily...as well as Jed, Joy, and family, and doctors, and nurses!!! I know this is so very difficult to see your sweet baby girl like this. But prayers are answered with Lily's medical care. And once her heart is fixed I pray you will see amazing progress in her recovery and growth!! Oh the blessing to watch two happy healthy children playing together!*!* Things to look forward to! We continue to send our (((hugs))) and **kisses** to your family.
...Aunt Sue and Uncle Millard...
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