11:55PM: just held a very fussy Nora for about 1.5 hours or so--I'm worried about her--she's usually not this fussy, though she's had a rough day with all the pokes and tests and the ambulance ride and all. her belly is definately bigger and of course, with her being so fussy I wonder if her belly is bothering her. she's still breathing without any assistance at all. They are giving Ryan additional fluid to help keep his blood pressure up. We are sleeping, literally directly across the hall from the babies (I use the term "sleeping" loosely here). I am going to try to get some rest. I miss being at the other hospital--I know this is where the babies need to be right now, but the other hospital is better for me emotionally. but, whatever, my emotions are the last thing I am thinking of, really. I appreciate the comments and prayers. I'll post an update sometime in the morning or sooner if things change.
8:30PM: just went and checked in on them. Ryan's blood pressure is dropping and they are now giving him meds to help keep it up---please pray--this part really scares me.
Nora is settled in, sleeping peacefully. I noticed that she is breathing completely independently--no cannula, no oxygen, no nothing. She looks great still. I'm going to go kangaroo with her.
8PM: sorry for the late update. lots has happened. Ryan had surgery, an exploratory laparotomy, and survived, which I am so thankful for. He had about 1/2 of his intestines removed--it was "liquefied" according to the surgeon, so we are thankful he got his surgery when he did. He is now back on the conventional ventilator. Some of his IV lines are now out b/c they put in a central line. He looks better to me. He has a large horizontal incision across his abdomen and two ostomys (ies?) where the open ends of his intestines are--he will be on bowel rest for 4-6 weeks, then they will try to reattach the two ends of his intestine. fortunately, he looks pretty good. unfortunately, he lost a lot of his bowel--including the ileocecal (sp?) valve--this could pose some problems with him being able to eat and digest normally in the longrun, but it's hard for them to predict how much. He is having another head ultrasound to check for bleeding and PVL tomorrow, which he is at increased risk for now with all of this going on. He is very puffy looking because he's so sick....it doesn't really look like him right now. We are at his bedside holding his hand and touching him as much as possible. He was given paralyzing meds, so he's not moving now--he'll probably start to clear those meds tomorrow and then they might be able to back off on the sedatives.
Now for the other news---Nora is here to rule out necrotizing enterocolitis--this was what I was hoping and praying to avoid. Her belly was a bit bigger today than usual according to her docs--no other symptoms. They stopped her oral/n-g feeds at St Joes and started antibiotics just in case. They said they wouldn't have done it if Ryan wasn't so ill--they are being more cautious than usual. We requested they look in to transfering her to the university hospital now, while she's still doing well in case she deteriorates and needs surgery quickly, like Ryan did--they were able to transport her and now she is next to Ryan in the NICU here. So far, her demeanor is good, she doesn't look sick--she was really angry about all the tests they ran today. Her spinal tap and cultures are fine so far. If she still looks good in 3 days, they will probably stop the antibiotics and start feeding her by mouth again. Let's pray that she just has regular old gas in her belly like the rest of us. I'm going to go hold her tonight. I'm thankful she was able to be transported here--now we at least have 2 of our kids in the same place again. Her head ultrasound to check for PVL has been moved up to tomorrow just because they do things differently here, i guess. please pray that this ultrasound is very boring and that they see nothing abnormal. i don't know if we can handle more bad news.
1:30PM: Ryan was examined by the UM surgeons and they decided it best to operate now instead of waiting for him to get worse. We spent some time with him while they were getting him stabilized here at the U. He is in surgery now--they took him at noon and it's now 1:30. They said it would take about 2 hours but they had a lot to do in that short time. I called to find out how Nora is doing and she's still healthy, thankfully.
AM: So far, Nora is OK. I'm worried about her, of course, since Ryan seemed wonderful until 8am yesterday morning. Any hope I had about their previous trajectory is now gone--I see how quickly things have changed. She is staying here.
Ryan has just been switched to the regular ventilator at about 6:30am this morning--they needed to do this to transport him and he finally looked good enough to try that. his blood gasses are actually better on this ventilator now. his belly looks better, less distended this morning, to me and his color is much better. he is still very sick. he is going to the University now (at about 9am) and will have surgery sometime this week most likely--we will know more once the University surgeons see him (they are at this hospital too and have already seen him here)--it is very likely that he will need multiple surgeries to remove the dead part of his intestines. John and I stayed here overnight. We are going to the University with him after we change our clothes quickly.
thanks for your prayers for Ryans healing and that Nora stays healthy.