Update... finally

I've wanted to write for days but have been completely overwhelmed. Everyday things like eating and showering have become luxuries. I'm not even sure where to start... I think the last time I wrote we suspected that Emma-Sky might have an infection. Then I got a phone call at 7:30am asking for permission to do a spinal tap to check for meningitis. How we went from not noticing her stomach looking like she swallowed a tennis ball to waking me up asking me to authorize a spinal tap I'll never know. They started her on broad spectrum antibiotics and then came the unbearable waiting for the results of all the tests they ran. Yesterday they said all of her cultures came back negative and they stopped antibiotics but couldn't start her on breastmilk again because she still had green bile in her stomach. She was pretty pale yesterday and will need another transfusion soon. When we got there today she was much more pink and alert and active. Quite a few times when we're talking to her she will smile this tiny, open-mouthed little smile and it almost makes me cry. The nurse that had her yesterday let me reach in and hold her for the first time, her head and shoulders resting in the palm of my left hand, her back and legs in my right hand with her feet just dangling a bit over my wrist. I didn't want to put her down. She started on 1.5 ccs of breastmilk at 3pm today and should continue at 6pm if she tolerates it. *fingers crossed*

Lucian has been doing pretty well for the past few days and is up to one pound 12 ounces. When I got there yesterday afternoon, he was intubated again and his septum has suffered so badly from the type of oxygen masks he's had since extubation. I was and still am completely furious because his nose should be checked every 12 hours (which the attending doctor confirmed when I was demanding an explanation as to how this could have happened) to see if it's sore or any changes need to be made. This definitely was a problem for days for it to be a bad as it is. I literally thought his septum was not there, that's how pushed back it is and red and just awful. I explained that it is completely unacceptable that it could have gotten this bad. I came home and began looking up alternative hospitals if need be, even in New Jersey because we will not accept anything less than the best care for them, period.

The doctor that will be there on days for the next 2 weeks is one we trust and love. He was the doctor who came to see us when I was on bed rest and was right there in the delivery room when they were born. He's patient and thorough and gives us real answers. At least that eases our minds somewhat.

There are many phone calls I haven't been able to make or return so thank you to my cousins - Linda, Stephen, Melissa and Tami for sending the most adorable preemie baby clothes and a letter I will keep and cherish forever, to my Aunt and Uncle who also sent preemie clothes that we love :), to everyone at school who was so generous, taking up a collection for us - we are planning to buy the babies' first crosses so that they have something forever, from all of you. To anyone who thinks of us, prays for us, or offers a helping hand. We are forever grateful to you.