In the last 18 days, Zoe has been poked 57 times. This includes all of the blood draws and the shots we give her twice daily. She is covered in bruises and scars. The good news is that she doesn't need another blood draw for an entire month, as we have finally found the right Heparin level at 0.35 mls of Enoxaparin per dose.
Last Thursday, we met with Dr. Fridge (Pediatric Gastroenterologist). Zoe's weight was 10lbs. 3oz. and her gastrostomy tube is healing wonderfully. The next step as far as GI goes is to replace her PEG tube with a Mic-Key button. The button is more for convenience, rather than necessity because it won't be a long tube coming out of her belly anymore. The button placement requires sedation, which always poses chance for infection, so we are going to wait until after the Glenn heart surgery.
I also discussed Zoe's nutrition with Dr. Fridge, because it` has become more apparent to me that Zoe will probably not breastfeed anytime soon or possibly at all. I have been pumping for over 3 months, every 3 hours and it is just one more thing on top of everything else. I was feeling guilty for even considering the switch because I would like to believe that my BM has benefited her. But Dr. Fridge put me at ease by telling me that most mom's that don't breastfeed and only pump, usually don't even produce enough to last this long and that the first two months of milk production have the most nutrients and antibodies, which I am already past. She recommended to stop pumping and slowly switch over to formula. Hallelujah! I still struggle with the guilt, but I have to admit not having to pump in the last 7 days has made my life just a little bit easier and less stressful!
Today was Zoe's appointment with Dr. Huffman (Pediatric Neurologist). She weighed in at 10lbs 8.8oz and 22 inches long. Dr. Huffman was impressed with her progress and all of her growth! Zoe does have a new rash forming on her face, all the way down her neck and part of her back. Dr. Huffman wants us to see our pediatrician tomorrow to make sure the rash is not a reaction to the Phenobarbital (anti-seizure medication). She would also like Zoe to have an EEG done soon to look at the health of her brain and then an MRI in the future. As opposed to Dr. King's thoughts on her next surgery being dependent upon the results of an MRI, Dr. Huffman doesn't feel that there is anything that could be seen on an MRI that would keep Zoe from surgery. She is going to talk to Dr. King and come up with a plan. She wants to see us back in 2 months unless we see any more seizure activity.