Monday, August 18th - Pediatrician visit

Last night went better than the first night at home. I think spreading out 2 feedings into 1 really helped everyone. Kinley was able to sleep through the night and Kevin and I were able to get about 4 hours of sleep in a row. Not too bad.

We had to wake Kinley up at 5 am for her bottle and she did pretty well. We still had to use the NG tube for about half of her feeding. She was still pretty tired and took a nap while the NG feed was going. In fact, at 8 am she was still sleeping and we had to wake her up again for her 8 am bottle. Kevin and I are pretty jealous of the amount of sleep Kinley is getting.

I was really afraid that Kinley would throw up after her 8 am bottle, because we were supposed to leave the house around 9 am for her doctor's appointment at 9:30 am. To my great surprise Kinley did not throw up and we finished her 8 am feeding (bottle plus NG) right about 9 am Since everything was already packed to go, we were on our way to Kinley's first pediatrician visit.

Kinley loves to take car rides we figured out. She falls asleep when the car is moving and wakes up and cries when we are stuck at a red light. It is pretty cute. It makes all the effort of packing up her stuff worth it to see her so happy and content in her car seat.

We pulled into the parking lot of the doctor's office at 9:35 am. Not to shabby for our first trip out of the house with Kinley. I went to check in while Kevin looked after Kinley. I appoligized for being a little late. (I forgot to mention earlier that we were actually supposed to be 15 minutes early since it was our very first appointment and there was paperwork to be done, but I knew that would never happen.) The nurse looked for Kinley's chart and for some reason it had not been pulled out yet, so she had to go look for it. That was odd, I thought. When the nurse came back she told me that I was not late at all, in fact we were about 24 hours early! For some reason I thought our appointment was on Monday all this time, but apparently it was on Tuesday. What an idiot I felt like. The doctor's office was really nice and said that they would get us in today since we were there already. We didn't even have to wait all that long before getting in to see the doctor. I was very impressed.

Kinley's appointment went well. She is 95% for length, 50% for weight and 40% for head circumference. The head circumference measurement was a little concerning for Kevin and I, especially after her abnormal head MRI, but the Dr. S didn't seem too concerned. This was just something to keep and eye on. Other than the NG tube and "battle wounds" that Kinley has, Dr. S said she looks like a normal 2 1/2 month old. That was great news.

Kevin and I have been trying to get some errands run since we brought Kinley home, but just can't seem to get them done. We thought maybe we could stop on the way home from the doctor's appointment, but by the time we left it was time to feed Kinley again, so we went straight home to do just that.

Kinley's 11 am feed started off great, but then ended with a crash and burn. After taking about 60 ccs from the bottle Kinley threw up again and out came the NG again. This is getting a little ridiculous. Kevin and I can't think of anything we are doing differently from when she was in the hospital and we were feeding her, but for some reason she is not keeping her food down well at all. I think we are going to try and step back a little. Maybe only feed her one ounce by bottle and tube feed the rest for now until we all get settled into being at home. If that doesn't work then we will have to come up with another plan. It is all trial and error at this point, but we are not giving up. One thing is for sure, Kevin is becoming an expert at putting NG tubes down. I bet he could do it in his sleep (if he ever got any sleep that is).

Kinley's 2 pm feed and 5 pm feed went better after Kevin and I regrouped and decided not to try and push Kinley to take most of her bottles. She didn't even take 3o ccs at her 2 pm feed, but her 5 pm feed she took about half. The good news is that when all was said and done (bottle plus NG) Kinley did not throw up either time.

Rounds for Kinley today were pretty late. Yes, I know that she is not in the hospital anymore, but around late afternoon we received a follow up call from some of Kinley's favorite nurses at Children's Mercy. They were just checking to see how we were doing and if we had any questions. Kevin and I knew what great care Kinley received while at Children's Mercy Hospital, but to get this much support after being discharged is above and beyond. Words can't express how grateful we are.

Around 6:30 pm Kevin and I found ourselves in a unique situation, we had finished Kinley's 5 pm bottle and it was not quite time for her 8 pm bottle. We actually had some down time. So what did we do with that time? Took Kinley on her first walk. Since Kinley really likes riding in her car seat we thought she might like a walk. Plus this was something that we could include Kobi, our dog in, so that is what we did. It was a really nice evening and everyone enjoyed getting outside for a little while.

After our walk it was time to feed Kinley her 8 pm bottle. Kevin and I did not do a very good job sticking with our new game plan of not pushing Kinley to eat her full bottle. She was doing so well and even smiling during her feeding that we let her keep going. She took about 70 ccs before throwing up, NG and all. I guess that is what we get for trusting a 2 1/2 month old. For her 11 pm feeding we tried a bottle again since she was still awake, but made sure this time to stop her before throwing up.

For Kinley's overnight feeds we are back to waking up every 3 hours during the night to set up new tube feeds. We were told that we should not do a 4 hour feed unless Kiley is hooked up to various monitors. Had we know this before hand we would not have done it last night, but no one mentioned that to us. We had even talked about possibly doing an even longer overnight feed while in the hospital. I am going to check with the discharge planner tomorrow to see if we can get he needed monitors through Apria, the home health equipment supplier, because I think it will end up being better for everyone.

I wil try to get some pics posted of Kinley's firsts today, but it is hard work just keeping up the blog. Hopefully I can get Kevin to help with the pics tomorrow.