May 26 - 30

She's been so sleepy all week! I suspect she's been in a growth spurt. Our babies usually have had one at three weeks old, but since she has been getting more milk her growth has really taken off! Dr Black stopped her at just over half milk feedings to protect her surgical site, so she is still on the TPN (intravenous nutrition) but only about half the amount for a baby her size. They're planning an x-ray next week to check the growth of her esophagus, our first chance to see if she is growing in that way. Hope hope hope!!

I haven't mentioned her wound progress in a long time, but the wide blistery IV burn on the back of her hand from the calcium citrate fiasco is nearly to the point that it can begin to scab over; you can see it healing from the deepest layers underneath the wound, and in the past two weeks it has turned from dark purple to red, to a reddish white.

 The best thing about it by far is that she is now using her left hand normally again; except for the huge band-aid, she doesn't seem bothered by it any more and freely uses whichever hand is closest to gleefully pull out her suction tube whenever we turn our backs. Her nose is now handling the Replogle really well too, on either side. She's definitely feeling much better, and we've enjoyed a relatively normal "cute baby" time with her this week--on Monday she'll be one month old! Her surgical wound on her side is still open from when they took out the sutures to clean an infection, but it too is closing in and getting smaller. Ironic to think, but I'm sure it will be beautifully healed in plenty of time for them to cut it back open, you know? Thankful as I am for the things I am learning through this experience, I can't wait until this is all behind us. I want so badly to teach her that basic trust-- that when people touch you it is a nice thing, they are not going to hurt you.

To finally get there, and then to need to return to those difficult days after she has her second surgery, and then to have the prospect of future problems (such as strictures, tightenings in the esophagus at the site of the reconnection that can make it really hard for her to swallow, which are treated a bit like an angioplasty with an expanding balloon) that could bring us back to the hospital-- sometimes it makes me hurt for her. My friend Tabatha had a really good idea, to talk to her and explain to her what we are doing when we touch her, so that as she develops an understanding of language, it can help her with that trust issue.

After a very sleepy day on Thursday, she woke up after evening cares and spent a happy hour with us. She was "rooting" a lot and we decided to give another try to the non-nutritive breastfeeding. To our amazement she latched right on as though she'd been doing it all along! I had just pumped, which is how we need to do things for now, so of course she wasn't really drinking, but it was adorable, her little sighs showed how comforted she was by it. At one point she did get a couple of drops of milk and was surprised and quietly thought about that for a while. If we can get her to associate nice feelings with her mouth, and pleasant tastes with swallowing, it will help tremendously to avoid the oral aversion that is usually a big problem for these babies as a result of so much medical trauma. Even better, if she can start learning how to breastfeed now and to like the taste of milk, she will be all the more prepared to start really eating when the time comes. Justin has been giving her tastes of milk on her pacifier sometimes, and the nurses and I have sometimes been giving her tastes of sucrose "SweetEase" on her pacifier too. It's really cute to see her wheels turning as she considers these tastes.

She loves her pacifier!! That's actually a pretty big deal in the NICU. Lots of babies have to re-learn how to suck and swallow without gagging, due to oral aversion. So far, Audrey only gags on it once in a while. We're thankful to our EA friend Vanessa for the suggestion to put the Replogle (suction tube) in the nose instead of the mouth so that she enjoys her "passie" much more than before when it was through her mouth.

On Friday morning we headed home to swap back with Mom and Dad and attend the last day of school festivities for our older three children. Baby Gideon was so happy to see us! Needing to be in two places at once for these kids is definitely the hardest part of this whole thing. We are still trying to figure out what to do when Justin's parents go home on June 10. My mom can come help during Father's Day week, but the rest of her summer is booked, so by the end of June we need to have some other plans in place. How can I leave Audrey up there? And yet, how can I leave four kids who need me at home? Who *I* need too. We all need each other so much. We all get a bit grouchy with each other too, as we deal with the emotional fallout of everything, the mixed up routines, the changes, the stress. Having Grandma and Grandpa live with us has been a nearly ideal solution for the time being, but after spending a generous six weeks with us, they have their life in California to return to. Justin and I are trying to figure out what would be the healthiest thing for our family-- we don't know if we can afford a nanny while paying rent up at Ronald McDonald too, but that is what would probably work the best. We're hoping to start getting something figured out this weekend.