I wasn't allowed to stay the night with Harper Tuesday night, which I was pretty sad about. They don't want parents staying until 24 hours after extubation and since Harper had just gone off the ventilator that morning, I had to leave her. We got here Wednesday morning and Harper had been off the pacemaker for an hour and a half already. We were beyond thrilled. Dr. Robinson had just told Dustin the day before that he was about 95% certain that she would have to have a permanent pacemaker put in. He was VERY shocked when he took her off and her heart took right over. Dr. Harrell came in about 10 a.m., figured out that she was out of heart block, and literally did a happy dance...as in he actually danced all over Harper's hospital room. I'm relieved, for Harper's sake, that she won't have to deal with that for the rest of her life. And more immediately, I'm thankful that they don't have to open her back up this week.
Since she's been off the pacemaker, she's had a little harder time eating. She did really well Tuesday night and part of Wednesday, but by Wednesday afternoon, we were having to force her milk down and it was really wearing on all of us. She didn't have a great night (eating wise) last night, so this morning, they went ahead and dropped a feeding tube so that we make sure she's getting everything she needs. We offer her the bottle and when she's done, we just put the rest down her tube...just like we were doing before surgery. I know she's just weak and needs to build up some strength.
This morning, Harper had two of the three tubes coming out of her chest removed. This is a huge relief for her and for me...I almost couldn't stand to see those things pulling on her skin. It looked SO painful. They left one drainage tube in around her heart and will probably take that out tomorrow. Since she got those tubes out, I could finally hold her. You can't imagine how it felt to hold her in my arms again. I missed her so, so much.
Harper had an echo cardiogram done this morning and although we haven't had a chance to discuss the results with Dr. Robinson, we do know that there is a small leak in the patch between the lower two chambers of her heart. Keep in mind that this hole and the patch material are HUGE and Dr. Harrell had a lot of difficulty sewing the patch in. He even had to do some stitches completely blind because of where the hole was located. The leak is small enough that we can manage it medically for right now, and it should eventually close up on it's own.
While Dustin was holding Harper today, he noticed that one eye was dialated more than the other and her eyes were just altogether looking strange. Because this can be an indicator of pressure on the brain, the doctor ordered a head ultrasound to check for bleeding. This was done and everything looked normal, so we are thankful for that. We'll just keep a close watch on her eyes.
Other than those things...we've just been hanging out and sitting by Harper's bed.
All of a sudden last night, it just seemed like Harper was herself again. It was so weird....one minute she was spaced out, groggy, and quite sad looking, and the next thing I know, she's wide awake, alert, and making facial expressions that are so "Harper." It's so wonderful to have her back!
So all in all, the last two days have been great for Harper! She's made a ton of progress and Dr. Harrell said she was right on track and even a little ahead for her recovery. I think she's done great. She is certainly a tough little thing!