Kinley (and her dad and I) had a very busy week last week. First of all I tried out a new work schedule. I worked the overnight shift from 10 PM to 8 AM for 7 nights in a row. That meant that I worked 70 hours last week! The good news is that I get this whole week off, 7 days in a row. Yea! It is especially nice since it is a holiday week. With me being gone every night last week, and having to sleep some during the day, Kevin had extra Kinley duty. As always, he did a great job picking up the slack and took excellent care of Kinley.
There was one little change to Kinley's care last week that made it a little easier on Kevin. Kinley went NG tube free! Well, for a few days that is. If she was off the NG for good you could have bet that would have been the title for this post. Anyway, Kinley was doing very good (for her) on her oral intake, so we decided to leave the NG out for a few days to see if she could keep up the good intake and even increase it without that pesky night time tube feed running. Kinley was at the point where she was eating anywhere between 500 and 600 mls from her bottles during the day. If you remember, her minimum oral intake to meet her hydration needs is 600mls, but we would like her to get closer to 800mls for weight gain. Kinley has been eating this much from her bottles for some time now and we can't seem to get her to eat anymore. We thought this was as good a time as any to pull the tube and she what she could do. The first couple of days she did pretty good, but her oral intake didn't really increase much even without that night tube feed. By the third day she was not eating as much and she had not had a poopy diaper for 2 days. Not a good sign. This brings us to Wednesday.
Last Wednesday Kinley had 3 appointments, and I made it to all of them thanks to my overnight schedule.
The day started out with a home visit from her occupational therapist. We told Kinley's occupational therapist about how we were trying Kinley off the NG and she thought Kinley was doing pretty good. She said that we might put some prune juice in one of her bottles since she was most likely getting constipated from a little dehydration. The constipation was probably causing the slight decrease in appetite for the day. After we talked about bottle feeds for Kinley the occupational therapist watched me feed Kinley some rice cereal. She gave me tips on how to make it more fun and interactive for Kinley and Kinley liked spoon feeding much better after that. The occupational therapist gave us the ok to continue to exclusively bottle feed, but said that we needed to watch out for more signs of dehydration.
Next up was a home visit from Kinley's friend at Parents as Teachers. Kinley liked playing with the new toys that Bridgett brought and she even left a little bag of goodies for Kinley to continue to play with. Bridgett still said that Kinley is looking good and gave us some new ideas for toys that would stimulate Kinley's learning and development. I am always looking for a good excuse to buy Kinley new toys.
The third appointment of the day was at Children's Mercy. We packed a cranky Kinley in the car and headed off to the Special Care Clinic for Kinley to meet with a child development specialist. The appointment was later in the afternoon and Kinley had really been eating poorly that day. I think the constipation was making her not want to eat, but she was still hungry, and she had not taken a nap since she had so many appointments, so like I said before, she was just cranky! The visit at Children's Mercy did not help matters at all. Kevin tried to feed Kinley while she was in at her appointment and the developmental specialist kept asking Kevin and I what we were doing and why. It was like she was judging everything that we were doing. We explained that we were trying to wean Kinley's NG and that the last couple of days went pretty well, but she really had not eaten much today and we thought she was getting a little "backed up". Plus she had not had a nap. The developmental specialist told Kevin and I that she thought we were pretty educated and we should start a log to track Kinley's eating because it probably wasn't as bad as we thought it was. To which Kevin and I stated that we had a fairly large spreadsheet to track what time Kinley started a bottle, what time she finished the bottle, how much she took, if any drugs were given with the bottle, if there was any throw up, if the NG tube was in or out for the feed, etc, etc, you get the point. We then told the developmental specialist that if she wanted to know exactly how bad Kinley was eating for the day she had eaten 85 mls total, and it was after 3 PM by this time. She was a little shocked that Kevin and I knew the exact amount that Kinley had eaten and told us we should go home and give Kinley some prune juice to try and help her out. That was exactly what Kevin and I had just said we were going to do. Anyway, after that was all out in the air, the developmental specialist tried to get Kinley to play with her, but with Kinley not being in a good mood to start with coupled with the fact that she cries for all strangers anyway, it did not go well. We were told that she could not do her assessment on Kinley and that she would like to see Kinley back in when she is a year old. As we were leaving the room the developmental specialist told us not to make the next appointment though, she would call us.
After that fiasco we took Kinley home and tried to give her a bottle with some milk and prune juice, but Kiney didn't want anything to do with it. We ended up having to put the NG back in and start a tube feed. As soon as Kinley had some food in her belly she slept for hours. It was a little disappointing that the trial off the NG did not go as well as we hoped, but now we know she is not quite ready yet. We are back to feeding her bottles during the day, around 500mls, and then a 200-300ml tube feed at night. We will continue to do this for a while and maybe try to wean in another month or so. We will see what Kinley wants.
Last Thursday Kinley had yet another appointment. She went to Dr S's office, her pediatrician, for her first RSV shot! Yes, they were approved! Well Kevin and I were happy, not so sure about Kinley. She did pretty well though. She had to have the shot broken up into two injections because of her dose, so she got one in each leg. As soon as it was over Kinley calmed down pretty quickly and we were on our way. Dr S's office let us bring Kinley in over their lunch break so no other kids were there. That way Kinley was exposed to as few germs as possible. That was so nice of them!
Now for the fun news. Kinley turned 6 months old on Tuesday!! Since I worked 7 days in a row, I got 7 days off in a row, so I was home all day to help Kinley celebrate. We didn't really do much, just hung out at home, but after last week with me working so much and having all those appointments it was nice to stay home and relax and play.