Harper had a pretty rough week and a lot has happened, which is why (once again) we have been so negligent of the blog.
Sunday and Monday were pretty rough days and nights for Harper (and us). Harper seemed to be in pain, was really fussy, and didn't rest well. She wasn't on any scheduled pain medications, so we had to request pain meds for her if we felt like she needed them. My opinion was that we just stay on top of the pain and keep her comfortable, but the nurses were very reluctant to give her anything. It was a constant struggle and they made us feel irresponsible or overreactive if we asked for Tylenol for Harper. It was quite frustrating. In addition to that, Harper didn't sleep much at all at night, making for long nights for Dustin or I, whoever was staying with her that night. On top of that, we had mostly nursing students the last few days who couldn't answer many of our questions and were altogether ineperienced. I know they can't help it and everyone has to start somewhere, but for extremely tired parents whose baby is upset and seemingly in pain most of the time, it was just too much at times. I'm embarrassed to admit that I can be a pretty intolerant person at times and when it comes to my babies...I have no patience for incompetence.
Dr. Robinson mentioned us going home on Tuesday, so when Tuesday arrived, we were anxious to hear from him. He finally came to see us after lunch and wrote the orders for discharge. Harper was definitely not herself still, but she was doing well enough for us to take her home and continue working on her feedings there (she still wasn't eating anything by mouth).
We had a rough night on Tuesday and through the night I noticed that Harper hadn't had a wet diaper, which is quite strange for her. Wednesday morning came and went and still no wet diaper. I finally called Dr. Robinson after lunch when it had been over 12 hours since her last wet diaper. He was concerned, but said he couldn't imagine her having a kidney problem since they had checked her kidney function no less than 30 times over the last 10 days. We also knew that she wasn't dehydrated since we are still tube feeding and know exactly how much fluid she is taking in. At 6:00 p.m. Harper still hadn't peed and I was pretty concerned. I called Dr. Robinson again to let him know. We had an appointment with him on Thursday anyway, so he said to just come in first thing in the morning. At 7:00 p.m., after 20 hours, Harper finally had a wet diaper. It was only a little, but it was a relief. Dr. Robinson called us at 10:00 that night to check on her and was happy to hear the good news. I know this is way too much information, but it's relevant to the next day, so stick with me here :)
Wednesday was rough in other areas as well...Harper cried a lot, still acted like she was in pain, was having reflux issues, and just didn't seem right. We took shifts that night so we both got at least a little sleep (Dustin got way less because he's too sweet and let me sleep).
We spent all day Thursday at Dr. Robinson's office. He did an EKG, echo cardiogram, blood tests, and x-rays to figure out what was going on with Harper. He also kept us there all day to observe her. She seemed to get better throughout the day and all of her labs came back normal, so that was a relief. Her heart looked good as well, so he discontinued one of her medications and reduced the amount of her blood pressure medicine. He offered to keep her in the hospital to observe her longer and he even offered to take us home with us (although he didn't know how his wife would feel about that), but we just opted for going home and keeping an eye on her there, knowing we can call him at any time.
Today has been SO much better. Harper was totally exhausted after our full day yesterday and slept all through the night. It was the first time she has really slept well since her surgery. She has been her happy, smiley self all day and hasn't cried much at all. It is such a huge difference from the past few days. We are so relieved. Relieved that she is obviously feeling better and relieved that she didn't have a big personality change as a result of all of this (which we were beginning to be afraid of). Hopefully we've turned a corner with her recovery and she'll continue to get stronger and feel better each day.
I'm sure you'll notice in the pictures that we are still tube feeding. We could have stayed in the hospital and waited for her to eat there, but that seemed kind of silly. So, we are working on it at home and letting her go at her own pace. She's been doing better today, so I'm hopeful that she'll be taking all of her feedings by mouth very soon.
So that's what we've been up to. I'm thankful that Harper is feeling better, because Eli and Landon are coming home tomorrow. I am over the top excited to hug those boy and bring them home with me for good this time. I'm ready to get back to the business of being a family.
It's way too late, so that's all for now. Thank you for checking in on us. We are very happily at home with our sweet girl and her fixed heart (at least for now that is). Life is so good!