Next steps

We were at the hospital until 2am last night and then up all night trying to find answers. Emma seems to be responding to the antibiotics they have her on, but she is the sickest she's ever been thus far. She sleeps mostly, her bodies way of trying to protect itself and heal. She weighs 3 pounds 2 ounces. Lucian is not being fed by bottle at all because he seems to have reflux, and they want his saturation to be consistent rather than dipping into the 70s. Feeding him by gavage rather than bottle hasn't changed that as far as I can tell, but what do I know after all, I'm only his mother. Last night Emma's breathing was labored and strained, her chest sucking in to the point of being able to see her rib cage, her stomach inflating. We told the doctor she's NEVER breathed like that... and the response was, "well maybe you've never seen her do it... she's in a very deep sleep..." I have been there at all times of day, for 8+ hours straight some days and I'm telling you she doesn't breathe this way. Her resps were over 50 when normally the alarm goes off that she takes so few breaths and yet can maintain a perfect pulseox. I'm beyond frustrated, I am done with the usual pleasantries and small talk with any of the staff there, except for maybe 2-4 nurses that have been great, always. Even the doctors we once had faith in seem like adversaries rather than partners in the best care of our children.

We are physically, emotionally and mentally drained, and Adam's been sick on top of it all. My to do list only grows each day. The nursery is no where near being ready and I'm not talking about the cute and fluffy things you'd like to have - we don't have the basics yet, there's not a single diaper in the house, maybe a handful of bottles. We have one crib and no mattresses. And the house itself is not close to where it should be, we JUST put blinds up a few days ago... the neighbors have seen more of me than they ever needed to I can assure you. The garage is full, the office is a mess and I can't be here to do anything about it because I have to literally BE at the hospital to make sure nothing more happens. I'm exhausted... it's nearly 11 and I'm just making something to eat NOW.

I'm not sure how this will all play out and nothing is in my control. I am achy and more tired than I ever thought was possible but I've also never known what it's like to love someone the way you love your children, so or that I am thankful. Also thank you so much to Dianne who has St. Patrick's church praying for the babies each week. It means so much to us.