The very first thing we noticed when we arrived today was that Kinley was in a new crib, compliments of Katie (Kinley's nurse today.) This new crib seems massive compared to her previous one. We thought Kinley was in a "big girl" crib last time, so I guess she is in her big "big girl" crib this time. (Sorry, we don't have any pictures of it yet. We will make sure to get some tomorrow.)
Katie let us know that they will not be doing "official" rounds today and we will simply have to wait for her new orders to come through in the computer before we know what changes will be made for Kinley today. She also informed us that Kinley has not thrown up since yesterday and all of her residuals have been pretty good (between 4 and 15 ccs). When the new orders did arrive we found out that no changes would be made to any of her medication. Her continual feed will be increased from 24 ccs per hour to 28 ccs per hour. 28 ccs per hour is considered a full feeding rate for Kinley at this time and this means that they will stop all of Kinley's extra fluids going through her PICC line. Kinley will keep her PICC line (IV) for now in case they need it, but nothing will be flowing through it. All of Kinley nutrition and fluids will now be coming solely from her feedings.
Kathy and Kinley gave breast feeding another try and it went much better than yesterday because Kinley did not get fussy or upset, but she still didn't really get what to do. She latched on a few times, but for the most part she simply licked and that is not going to the job done. OT (occupational therapy) will be back this week and hopefully they will be able to give us some helpful hints. Overall I felt that today's breast feeding attempt went really well and I think that Kinley will simply need a little time to get things figured out. It also probably doesn't help that she is on continual feedings. With continual feedings Kinley never feels hunger so she probably doesn't have much desire to breast feed. When they begin to compress her feedings to smaller amounts of time and she begins to feel hunger then we might have a better shot at a successful breast feeding session.
Kinley got a little bit of tummy time today and she did great. While laying flat on her belly in her crib she lifted her head and turned it once each direction, all by herself. Granted, she did not do either turn very fast or back-to-back, but the point is she did them all on her own. We already knew this about Kinley, from earlier tummy times, but for the most part she really doesn't seem to mind laying on her belly. After her little head turning display she fell fast asleep and we let her lay like that until she woke up.
After shift change we find that George (Georgianna), Kinley's night nurse, is back. During George's last rotation she had to help take care of a baby that was on ECMO. From being on ECMO for 21 days, Kinley knew that the other baby needed George more than she did so she was more than happy to wait and see George tonight.
While George was in working with one of her other babies tonight, Kathy and I decided to work with Kinley on her flexibility exercises that OT showed us. In the middle of stretching out her left leg, Kinley's backside let out a tremendous noise and we knew right away that she had a dirty diaper. Together Kathy and I worked to change Kinley's dirty diaper and clothes. That's right, we had to change her clothes because her diaper could not contain her dirtiness. Our teamwork, as a family, was amazing. We did not get any extra diapers dirty and we got Kinley into her first shirt ever where both arms were in their sleeves. Before today we could not put Kinley's left arm in a sleeve because that arm has her PICC line and it had always been connected to a fluid line.
Kinley ended up sleeping away a good portion of her afternoon so Katie was not able to feed her any bottles. This means that George will need to try and fit in 2 bottle feeds with Kinley before the morning shift change. Unfortunately we had to leave before either bottle feed. We will just have to wait until tomorrow to find out how Kinley does.
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It took my CDH baby a while to get the hang of breastfeeding. I know it is frustrating, but hang in there. It will also be a lot easier to practice once you get home.
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