I have been trying to get this posted since Monday and I can't believe it has taken me almost a week! I have been doing my best to keep the blog updated, but going back to work full-time has really been hard on me, especially the weeks when I work 6 days out of 7, like this one.
On Monday Kinley had another appointment at Children's Mercy. She was seen in the Special Care Clinic and by the occupational therapist. I was pretty disappointed that I had to miss it because of work. We try to get all of Kinley's appointments for times that Kevin and I can both attend, but it doesn't always work out that way.
This is what I was told about her appointments.
During her assessment at the Special Care Clinic, Kinley was weighed and we are happy to report that she has not stopped gaining weight. She was up to 13 pounds and 14 ounces! This continues her trend of 30 grams per day weight gain, so that was great news. The nurse practitioner also mentioned that Kinley is doing really well with her height. She is around the 50% percentile for both height and weight. Kinley also sated (don't really know if that is a word, but everyone always talks like it is) 100% when they measured her oxygen saturation. Kinley's Prilosec dose was increased because of her weight gain, but other than that, no changes to note.
The occupational therapist observed Kevin giving Kinley a bottle. Kinley has been eating very poorly for Kevin and I at home, but she always seems to do better at the clinic with an audience. Show off! Kinley ate a little better at the clinic, but still not great. She ate 55 mls, which is not even 2 oz, or half of what she should be getting at each feed. The occupational therapist was actually pleased with how Kinley ate. I guess Kevin and I just have higher standards for Kinley since we know what she is capable of eating. We know that she can eat 100 mls at a feeding because she has done it before, but lately she has been eating less than 60 mls (2 oz) at each feed. There have even been a few feeds where she will refuse the bottle altogether and has to get the entire feed (120 mls or 4 oz) through her NG tube. I think another reason Kevin and I would like to see her eating more is because we are the ones who have to put her NG tube down whenever she throws up or pulls it out. We really can't wait until she can be NG tube free, but we have a long ways to go before we even start to think about that. I guess it is not as bad as I make it sound though. The occupational therapist was happy with the feed because Kinley is a lot less fussy at the feedings. She screams a lot less and I think she is not as stressed out at her feedings anymore. I think the fact that Kevin and I are not forcing her to eat more and the fact that her milk is thickened is helping a little. I just wish that if feeding is not as unpleasant as it was she would eat more. Oh well, baby steps I guess. The occupational therapist did suggested that we try a nipple with a higher flow on Kinley's bottles so that she gets the milk a little quicker. Our main problem lately has been that Kinley will lose interest in her bottle or fall asleep before she can eat enough. We will see if the higher flow helps or not. (FYI-since I am writing this post almost a week later I can tell you that it doesn't seem to have made a difference. Bummer. Maybe they will have some more suggestions next time.) For the time being Kevin and I will continue to offer Kinley a bottle 5 times a day and give the rest of her food through her NG.
Kevin was able to make Kinley's next appointment on a day where we will both be off and can attend, so I was happy to hear that. I felt so bad, not only did I miss her appointment, but Kevin had to get Kinley ready and down to Children's Mercy all by himself. It is not easy taking care of Kinley by yourself, but Kevin is a great dad and if he had any trouble at all he didn't let me know about it.