Well-
Today is not much different from yesterday - We did get her renal panel back- BUN is down to 24, Createnine is 4.2 (so it is up from 3.9 :( ) - I clarified with the Dr. and he explained that the BUN indicates how well the body is processing the protein- However Creatinine is the waste product made by the metabolism of creatine (which is what is made when your body converts food into energy). If the creatinine is high, then the waste product is not getting out of the system. So the more concerning part is the Creatinine at this point in time.
Madeline also lost weight last night- She went down to 4.120 from 4.130 from last night- so she lost 10 g. This is not a huge weight loss, but a steady one as she was at 4.2 the beginning of this week.
We talked to the nutritionist yesterday and she explained that they want to supplement her with a carbohydrate mixed with vegetable oil. The vegetable oil supplies the fats, the supplement ( Polycose) would supply the carbohydrate. This item is derived from cornstarch basically. We would not be able to use enfamil fortifier which would have been preferable to us *(thanks for the lead on that)- because it contains protein, and her body cannot handle anymore protein it has had a hard enough time breaking that down. I also asked about using coconut, sunflower, or olive oil instead of vegetable or canola oil and the Dr. said we could not do that. When I asked why he said 'because we don't do that here.' He told me it's not like they can just go to a grocery store , buy some coconut oil and use it- it has to be processed in a way that's safe for the baby. The nurse said they are likely weary of using it because they have to go by what they have research on and there is not enough research on the effects of using the alternatives to vegetable or canola. It sounds like our only choice here is to do or not do. We have not made a decision yet. The doctor said we would talk more about it on Monday. She has not gotten up to full feeds yet so I would be interested to see the impact that has on her. PLEASE pray that she would gain weight so that we would not have to make this decision.
They are unable to wean her down more on her blood pressure meds that she receives through her broviac line because her blood pressure has been elevated again. They are going to increase her dose of her oral bp med (enderol) and see how things go. :(
Please please please keep praying for Maddie that things would get better, she would gain weight, her numbers would improve, and that she would be able to stay off dialysis. Thank you God for all the improvements she has made so far. We put her in your hands!
Have not had a chance to speak to Everett's mom and get an update- hope to soon-
Adalee's parents told us last night that despite their not wanting to that if she did not gain weight by this morning they would probably have to put her on the formula supplement as well. We will see how things go/if we can catch up with them..
Thanks everyone - We are encouraged by all of your support!
That is too bad that the doctors are unwilling to work with you on this. :( I disagree that the other oils aren't safe; I'd personally be much more comfortable using organic, unrefined coconut oil than highly processed, GMO soybean oil. (As I'm sure you would be, if possible.)
ReplyDeleteAnother alternative is to focus on consuming more of these oils, especially olive and coconut oil, yourself. It will increase the fat content of your milk, and should work pretty quickly. You might notice that she would poop more and it would be "seedier" if she were getting more fat. Perhaps you could try this and just wait a day or two and see if there's any change, before having to make a decision on the fortifier?
I hope you can make something work. :( It's not an easy situation at all.
One of my blog readers has an interesting idea -- she says with her baby (who was in the hospital and not gaining weight too), she pumped, then skimmed the fat off the milk and fed only that for awhile. She saved the rest in the freezer for when the baby was older, to mix into solid foods. Her baby gained weight when fed only the cream for awhile. I wonder if this would be possible for you, especially if you were able to up the fat content of your milk?
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