We had another family conference today.
We asked to hear the general plan for Karsie and (as we suspected) there isn't a set plan because right now everything is trial and error with her. The goal is growth. The only real plan is for the doctors/dietitian to come up with some kind of regiment that will get Karsie to grow and keep most of her food down... That is, at this point, the last hurdle. Karsie will most likely come home with the feeding tube and some meds and we will tend to those things at home and with her pediatrician. So the big goal for the hospital care is to get her to grow. She is still on 24cal/oz and tolerating it well (again). It is possible, but unlikely, that she will grow with the 24cal. If she doesn't grow, there will be another attempt to give more calories (and some extra nutrition) in a format she can tolerate. So our huge prayer at this point is that she will either grow with the current recipe, or the doctors/dietitian will be able to come up with a recipe that will help her grow... and also that we would have patience as the process goes on.
As for her daily update, she has only had 2 spit-ups since last night. One was a fair amount (20mL-ish) and the other was more of a wet-burp of 3mL. She is stooling better and appears to be much more comfortable than when she was on the 25cal/oz. We are hoping that we will start to see some weight gain now since she is spitting up less!
The hospital is preparing to shut-down (on Wednesday) to all visitors due to the H1N1 flu, the RSV flu, and the seasonal flu (the flu trifecta). This means that Grandpa will no longer be able to visit Karsie until she comes home. Nana will be able to go in on evenings with Michelle while Kevin is out of town, but when Kevin is in town she will not be allowed in either. We are glad that it has been put off this far, but we are even more anxious for her to get home with the new policy.... and the fact that it means flu season is fast approaching, and we want her out of the germ-infested hospital.
Thanks for the continued prayers and support!
Sunday, October 4, 2009
One Step Back
Friday:
The doctors agreed to take the extra calorie out of Karsie's food. She is back on 24 calorie and doing slightly better. Her stooling pattern has returned to her normal and her spit-ups have gone down considerably in volume. Friday, she was also taken off the multi-vitamins and the reglan (med for helping with reflux). She got a transfusion of Grandpa's blood Friday evening to help with her energy. She took 28mL breastfeeding and around 20 from the bottle.
Saturday:
Saturday her feeding was left alone but she was put back on the reglan to try to help with the spit-ups. She had fewer spit-ups and the volume was still low! She is also continuing to have a more regular stooling pattern. She didn't do as well feeding orally as she can, but we didn't push her either. We are trying to make every oral/eating experience positive... so if she shows us she isn't interested, we try to let her be the boss with it. If she eats and then throws up, she didn't get the nutrients anyway and she then begins to associate eating with bad feelings. Pinky still looks amazing. It is over halfway covered with real skin, and the rest is good granulation tissue. Still no growth.
We are hoping that Karsie will be able to grow on the 24 calorie food and begin to take bigger feeds by mouth. She will have to show a good amount of growth before she will be able to come home (even if she has the feeding tube still). Hopefully this week we will see a few steps forward.
The doctors agreed to take the extra calorie out of Karsie's food. She is back on 24 calorie and doing slightly better. Her stooling pattern has returned to her normal and her spit-ups have gone down considerably in volume. Friday, she was also taken off the multi-vitamins and the reglan (med for helping with reflux). She got a transfusion of Grandpa's blood Friday evening to help with her energy. She took 28mL breastfeeding and around 20 from the bottle.
Saturday:
Saturday her feeding was left alone but she was put back on the reglan to try to help with the spit-ups. She had fewer spit-ups and the volume was still low! She is also continuing to have a more regular stooling pattern. She didn't do as well feeding orally as she can, but we didn't push her either. We are trying to make every oral/eating experience positive... so if she shows us she isn't interested, we try to let her be the boss with it. If she eats and then throws up, she didn't get the nutrients anyway and she then begins to associate eating with bad feelings. Pinky still looks amazing. It is over halfway covered with real skin, and the rest is good granulation tissue. Still no growth.
We are hoping that Karsie will be able to grow on the 24 calorie food and begin to take bigger feeds by mouth. She will have to show a good amount of growth before she will be able to come home (even if she has the feeding tube still). Hopefully this week we will see a few steps forward.
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