3 week update

I never expected that Everly would still be in NICU 3 weeks after being born. I guess I was a bit oblivious, or maybe just hopeful, that her condition wasn't so serious.  But the good news is that Everly is doing much better than her first week in NICU and is making strides each day. Since coming off of ivs and oxygen, we can tell that Everly feels more comfortable. Her tone, color, and manner has drastically improved.  This past week we got confirmation that Everly has congenital pseudoarthrosis of the clavicle. We can opt to do surgery or just let it be. The condition is not painful nor does it giver her much physical limitations, unless she is very active. If she is anything like me and loves to be active and play sports than we will most likely do the surgery. Feedings continue to be a challenge. Speech therapy attempts to bottle feed her once per day. Everly has become quite content with tube feedings and does not like the idea of having to work for her food. In fact, she purely despises the milk the instant it hits her tongue. She has maxed out at 10mls through the bottle and her feedings are 75mls so there is a lot of work to do before she can come home. Regular feedings (both with frequency and volume) are critical to maintaining Everly's blood sugars so we have temporarily ommitted breast feeding until she is more stable.  I am glad she still gets my breast milk through the tube feedings though. The endocrinologist saw Everly on Wednesday and placed her on diazoxide, which is a temporary 3 week dose of medicine, that is intended to regulate insulin production. Everly cannot come home until she completes her dose. Although we are very anxious to have her home and to get into a regular routine we are ok with whatever time she needs in the NICU to be healthy. I don't want to have any scares when we have her home.