Another fairly uneventful week thank goodness. We had a visit Wednesday with an echocardiogram, line dressing change, labs and clinic visit with her doctors. After our most recent cycle Audrey seemed to be nauseated for several days afterwards. We kept her on her anti nausea and fortunately by day 5 she seemed to have regained her appetite quite dramatically. We haven't seen any other visible side effects other than the nausea and possibly a stronger preference in what she eats.
She is still hanging on to a little bit of her hair and we are just going to let it go and look forward to it coming back once she's done. We have tried to get a few more hats as it is getting colder and she is nearly bald but I don't think she lets a hat stay on for longer than 20 seconds. We will just keep trying!

Her echo was probably the toughest we have had so far. We weren't big fans of the tech who performed it. She didn't have a very calm demeanor and I think Audrey picked up on that. Also, Audrey's line is placed right over her heart so it makes getting the images slightly challenging and covers her dressing in the gel. Not fun. We heard back on the same day it was performed and all of the measurements were the same as her previous echo- so it looks like the meds have not affected her heart thus far. Thank The Lord.

She gained weight again! Woo hoo! Not much of a gain but a wins a win! We are continuing to keep focused on what she is eating and trying our best to accommodate what she wants while also getting her to eat what's going to give her the most calories/fat. I am thankful that Audrey is still drinking breast milk. So many stop breast feeing earlier but I am confident that it is incredibly beneficial that she is getting it considering her health.

Our visit with her docs was quick. We just touched base on her levels and what we had been dealing with since cycle 2 was given.

Saturday we went back just for a lab draw to check on all of her levels since we won't see them again until Wednesday. Everything looks good- meaning she doesn't need any transfusions- but she is neutropenic. This means her ability to fight off infection is extremely compromised and at the same time she is more likely to run a fever. So we are keeping a close eye on her temp while her body bounces back up.

I do have to say that we had a less than ideal interaction with our nurse Saturday. She started off asking us why we were in for labs- what we were looking for. Apparently she was helping the person who was supposed to be our nurse (whom we never actually saw). So the whole time she seemed a little inconvenienced and annoyed. At one point my mom asked about why Audrey got a double-line instead of a single. I explained that double lines help if two meds need to be administered simultaneously and also two allows one to be used for draws and the other to give meds. The nurse then says "well we give these lines to babies who are going to be really sick and who will be inpatient a lot." Gee, how sweet. We also mentioned her birthday coming next week to which she asked if we had "big plans." Hmmm, her immune system is incredibly compromised- what do you think? She then told us "well hopefully you aren't inpatient for it." Uh, yeah. Thanks. Our nurses are typically amazing but I have to say, I think she could use a lesson in bedside manner.

So next week we go in again for labs and clinic. Hopefully Audrey's system is recovering as we speak and she can enjoy her birthday week with just the one visit to Children's. I am back to work for a few days before I can start my new leave (very complicated but I have I wait until Audrey's bday so that we have hit when I started leave last year). So she has had some much-needed daddy time instead.

We will continue to update after next week. We know we haven't hit the worst of this process but are taking it day by day and we are so grateful it has been so smooth thus far. Thanks for following our journey.