But the past few days had really shattered my confidence. I just really didn't know if I even wanted to take her home, because she was still kind of borderline on her "sats" and it just makes me so nervous. So, they suggested that we "room-in" last night to prepare to go home today. So we packed up all of Harper's stuff and moved into the mini hotel type room to be on our own with Harper all night...kind of a trial run, with a lot of support near by if we needed it.
Harper has been getting a little more difficult to feed the past two days. We have to pretty much force her to finish her bottle. Well...last night, it just wasn't happening. No matter what we did, she was NOT going to eat. We tried for longer than we should be allowed to make her eat and when she wouldn't, they had to put the feeding tube back in and tube feed about 3/4 of her bottle. It was very discouraging. It happened again early this morning, so once again...we stay.
I'm disappointed, but much more than that, I'm relieved. I'm so glad that Harper decides to act her worst when the cardiologist is around or when we are about to go home. It just seems like things keep happening, at just the right time, to keep us here longer. There has to be a reason for that. I'm very thankful that we didn't go home on Thursday only for Harper to shut down and not eat for us. She's so tiny and she needs those calories so badly.
So her oxygen saturation is finally looking good, but now she's not eating, which is another symptom of the large hole in her heart. She is just too tired - her heart is working too hard.
You might have noticed that our plans are constantly changing and evolving based on what Harper needs at the moment. So after talking with Dr. Robinson this morning, here is our new plan:
Lab work was done this morning to check for infection and give us an idea of her general well-being. Everything came back normal. Dr. Robinson ordered another echo cardiogram for tomorrow to check and see if that PDA has opened back up, causing more stress on her heart. He also wants to make sure there isn't any back flow through her valves and see if everything else is working as it should. He also started her on another medication to help her heart pump more efficiently. She will keep her feeding tube in and we will continue to bottle feed her as much as she'll take, and then tube feed the rest to ensure that she's getting everything she needs. And we'll just watch her.
As Harper becomes more symptomatic, there is more talk of the PA band surgery which would be an intermediate step to help her heart not be under so much stress as we wait for her to get big enough for the patch surgery. If she has to have the PA Band, we want to wait at least 2 to 3 more weeks. She really needs to get a little stronger.
The good news is: none of this is putting a damper on Harper's fun!
This was Harper's sweet nurse the past three days. Her name is Lin and we all loved her. Lin, if you're reading this...looks like we'll be seeing you again this week.