Thursday, August 21 - What goes in must come out

No problems to mention as far as overnight feeds go. Kinley woke up at 8 am for her bottle, so I took her downstairs and started feeding her. I wanted to let Kevin sleep since he was up really late last night with Kinley while I slept. Kinley had other plans though. She was super fussy for her 8 am bottle and about halfway through her feeding I found out why. She was working on a pooh the whole time. When she was finally able to go, it went everywhere, except in her diaper. We have not had any problems with her diapers before this incident, so I will just chalk this up to bad luck. Unfortunately, I had to wake Kevin up to help me clean up since it was all over Kinley, me and the area that I was feeding Kinley. After that mess was taken care of, Kevin took over feeding Kinley since I was not getting anywhere. Kevin was able to get Kinley to take about 2 oz, so we just gave about 40 mls through her tube. Everything was fine until about 10:00 am when Kinley threw up, and it was quite a bit I must add. Time to get out the bath tub and put her NG tube back in. If only Kinley knew that if she didn't throw up she wouldn't have to have her NG tube replaced all the time.

Kinley also happened to have a huge pooh during her 11 am bottle. Not quite as bad as last time. This episode only required a new outfit, not a full blown bath. Other than that, we laid her down in her Boppy (so her head would be elevated) to take a nap while her NG tube feed was going and that seemed to help her keep her food down.

All the other bottles for today have been pretty consistent. Kinley has been fussy for all feedings, but has taken about half of the 100 mls that are in each bottle. The rest was given through her tube. Kinley has also not vomited anymore today. YEA!!

Angela, Kinley's home health nurse came by for a visit this afternoon. I was anxious to see what Kinley's weight was since she has been throwing up so much lately. While we were in the hospital we were told that Kinley should gain about 30 grams per day. Angela said that anywhere between 18 and 30 grams is good though. After getting Kinley's current weight we calculated that Kinley had gained an average of 25 grams per day since Sunday, which was Angela's first visit. I was pretty happy with her weight gain, I thought it would be much worse with how much she has been throwing up lately. Everything eles looked good, so Angela will be back again on Monday to re-check Kinley.

Yesterday I was pretty stressed out with Kinley's feedings. After getting some much needed rest I was able to step back and look at everything in perspective. When Kinley was on ECMO and the ventilator I told myself that I would be happy to hear Kinley cry. (Not that I wanted her to be unhappy, but at least it meant that she was healthy enough to cry.) I also said that I would be happy when Kinley was able to eat orally, and at that point I would have been happy with 5 mls orally. I guess what I am trying to say is that Kinley has come a long way and she is one tough little girl. If she needs more time to get the bottle feeds down, then we will give her the time she needs. She deserves that after all she has been through. I am sure that with time and encouragement she will eventually prevail and we can take the NG tube out for good.

I also wanted to thank everyone for being so supportive of Kinley, Kevin and I during this difficult time. The thoughts, prayers and gestures have all been greatly appreciated. When Kinley does have one of her bad days, that we all have once in a while, it is so nice to know that there are so many people out there, family, friends and the community, encouraging her. I may have been focusing on the negative the past couple of days, but Kinley, Kevin and I are actually pretty lucky to have such support. Thank you, it really does mean so much!