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July 29, 2007
more pix below
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.
Posted by alicia at July 29, 2007 12:28 PM
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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!
Posted by: Salome Ellen at July 30, 2007 7:56 AM
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.
Posted by: jess at July 30, 2007 8:53 AM
Thanks for the clarification, Jess.
Yes, grow Emma, grow! Prayers continue!
Posted by: Mimi at July 30, 2007 12:40 PM