What a difference a week can make

Can't believe a week from today E was born. What a fast week it has been. Didn't write a post last night because we were able to sneak away to the NICU last night after K went to bed (and Grammy Abbey kept a watchful eye). It was nice being there when no one else was really there since it was quiet, dimly lit and somewhat peaceful. I was able to make it for the 8 pm feeding to nurse E which was a nice bonding moment. The NICU is filled with beeping and the buzzing of machines which somewhat lulls you to sleep. Once E comes home she probably won't be able to sleep in complete quiet! In the grand scheme of things, we are so lucky since there are tiny, tiny babies in these incubators struggling for every breath and here we have this healthy, pink cheeked baby who looks so healthy. I just want to scoop her up in my arms and take her home. That is the most heart wrenching part of this entire ordeal is walking away from her crib, going home and leaving her behind.

So for the update. Yesterday we had an appointment with the pediatric endocrinology team at Children's - our first meeting with them face to face. They have been consulting/studying her case since she was at the Women's Hospital with me and have been looking at the result of every blood draw, test and breath she takes basically. We met with them for an hour (total information overload) and in a nutshell they are trying to build a case for a diagnosis by piecing together results from various tests that are coming back from her stay at the Women's Hospital as well as Children's. The round of tests they did at the Women's Hospital when her blood sugar was so low is the only data they currently have from labs (and not just heel pricks from glucose tests which they do every 3 hours before she eats) and they would like to run the exact same series of tests at Children's to compare/contrast information. Yesterday she had a glucose level of 44 (again quite low) and they quickly tried to gather all the necessary samples from E to basically capture that moment but they were unable to do it all through her current IV line through her umbilical cord stump. For that reason, she was scheduled to have a PICC line inserted yesterday to help them be able to act more quickly next time. So frustrating because we've been waiting to lower the glucose solution levels to get a reading at this low level, she goes to the low level on her own (which isn't a good thing) but tried to take advantage of the moment and the moment passed. (Sigh).

Probably the hardest item we had to swallow from yesterday's meeting was that she'll be there for quite a few weeks it sounds like (a month, more than a month? can't really say). I think both D and I were really hoping and expecting to come home much sooner than that and we're trying to recover from that news. It is challenging balancing getting to the hospital and a very active toddler who can come to the NICU with us but for very short periods of time since she isn't very quiet these days and is so active. She hasn't been for a visit yet, but the NICU social worker recommended it so we're working on getting her immunization records sent from our pediatrician so she is cleared for visits.

As I quietly rocked E to sleep last night, I couldn't help notice she was wearing a little green flowered Carter's outfit that her sister K was wearing in this photo:


My cousin Erin Elizabeth cuddled K (at probably one month old in this picture) the weekend of her high school graduation. Unfortunately Erin was taken from us much too early from Ewing's Sarcoma at the tender age of 18. Erin Elizabeth (for whom E was named after) was so strong and independent and I can only hope E has received some of her characteristics to help her (and us!) through this. Interesting and mysterious how interwoven life is at times.