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I just got another couple of pics uploaded, and as you can see, she is apparantly thriving - but she is still not gaining weight! And until she starts gaining, she can't go home.


Alicia, have they considered that as her hydrocephalus decreases (and it is, you can see the loose skin on her head) she will lose fluid weight as she gains body weight? She may be doing just fine on both counts!

Trust me, we have tried to point that out, as well as some of the other factors (surgery intervening unnecessarily and cutting her feeds back before she was at goal, causing her to get less calories and fluids than she needed, etc). Some of the Neonatal nurse practioners and the nurses understand that we are dealing with a multi-factoral situation, but the surgeons and the neonatologists are much more numbers/outcome based. They have to have quantifiable numbers in front of them. And, when you look at the numbers only, she had a drastic decrease (.14 kg) when she was taken off the TPN fluids, and then has stayed "stable" for over 7 days. It's incredibly frustrating, as she is otherwise a very healthy and active (and hungry and peeing and pooping) baby. At this point, she is simply a normal, average sized baby (still well on the charts for a 5-6 week old) with a shunt. So, every day I say to her, eat baby eat and grow baby grow! Heck, the nurses (who LOVE her) keep on telling her they don't want to see her by their next shift.

Thanks for the clarification, Jess.

Yes, grow Emma, grow! Prayers continue!

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About this Entry

This page contains a single entry by alicia published on July 29, 2007 12:28 PM.

Mom, here you are was the previous entry in this blog.

great news!! and thanks for all the prayers is the next entry in this blog.

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