We have been home since wednesday night and are doing well. Just trying to figure out the best ways to give Addie her meds without her spitting them back out at us. She is taking two different meds, one for blood pressure and one for the lasix, which is to help her keep fluid from building up around her lungs and helps her breath easier. We have also been doing tylenol every 4 hours. Today was the first day I tried to see if she could go longer without it and this evening it was evident to me that she was in pain. So she's not ready to quit using the tylenol. But she was able to go 5 or 6 hours between doses, so that's better than 4.
She has been "talking" our ears off, I just can't get enough. She is even laughing out loud at times, although it takes a lot of work to get one of those laughs. Prior to the surgery she was sleeping from 8 pm to 5 or 6 am and that hasn't happened yet. The last couple of nights she goes down between 8 and 9 and sleeps until 3 or 4, last night it was 5, so we're slowly getting to be back to sleeping longer through the night. Which is nice, because I really don't like those middle of the night feedings. It is pretty cute though how happy and talkative she is, even at 4 in the morning. I try not to talk to her during the middle of the night feedings so she doesn't think it is a fun time, but it is so hard not to talk back to her when she is smiling and oohing and ahing at me. It is so cute!
She does not sleep as much as she used to and when she is awake she is ready to go! Prior to the surgery she would be up for about an hour before she would start to get tired and now she is up for about 1 1/2 to 2 hours before she starts showing she is tired. I'm still trying to figure out when the best time is for naps so as to not over stimulate prior to that time.
I had been wanting to use the Baby Wise princples, but didn't stick to them very much prior to the surgery mostly due to the fact that we couldn't let her cry herself to sleep so I was always rocking her to sleep. I have tried to let her have a good cry a couple of times, but I can only take a couple of minutes of her cry before I have to go in and get her and rock her to sleep. I want to give her little heart more time to heal and then we'll try the Baby Wise stuff again....I am using the Baby Wise principles when it comes to eat, awake time, sleep, and that seems to be working pretty well, it's just that when it comes to the sleep part I am rocking her to sleep instead of letting her fall asleep on her own. But we'll get there....
For the month of October I had commited to doing 31 for 21....31 posts for Down syndrome (T21) awareness month. And although my 31 posts didn't happen each day, I did end up having 31 posts, so that is exciting!
We saw Dr. Mark (cardiologist) on Thursday and he was so impressed with how Addie is doing. We see him again this friday and as long as everything looks good, we'll increase the length of time between follow ups.
Addie did break out in a rash on her chest and tummy today, so that makes me a little nervous, but I called and talked to Dr. Mark about it and he didn't seem to concerned, but if it is still there tomorrow to get it checked out. So hopefully Addie will wake up in the am rash free!
Tomorrow we start back with physical therapy at Witwer and it will be good to get some tips on how to keep working on strengthening Addie's neck since she can't be on her tummy. So hopefully Carol will have some good ideas.
We had a pretty low key weekend, the owner of Zac's company had people over to his house so Zac and I did manage to sneak out for a couple of hours and our friends babysat for us....thanks Mark and Molly...and Molly's mom! We are to keep Addie pretty secluded until 2 weeks post op which is this thursday, so we'll slowly be able to start having a life again! They just do not want her to get sick in these next couple of weeks so they don't have to worry about fevers, etc....
Other than that we are doing good other than not being able to get a whole lot of things done around the house. Addie is requiring a lot of holding and rocking, but that's OK. I just want to make sure she is comfortable and not in pain. Hopefully she'll really start to feel better this week and will be needing to be held less and then I can catch up on house work! We have been so blessed by our friends as they have been bringing us meals which has been SO NICE. Not sure if we'd be eating if it wasn't for them doing that for us!
Sorry this got long, but just wanted to get an update!