Sorry for the lack of an update. I tried posting on the ride up here, but couldn't connect via phone for some reason. Gotta figure that out.
The lifeflight team called me about 3:40 today and said that they had safely landed at Duke about 1/2 hour prior and that the ICN (Intensive Care Nursery) was checking Riley in and evaluating him then and that Riley did excellent on the flight.
We got to Duke about 5:45 and by the time we found where we needed to go (long awful story that ended up being a LOT of walking for me), it was 6:30pm by the time we walked into teh reception area of the ICN where we were greeted with "no going back between 6:30am-7:30am or 6:30pm to 7:30pm". had i not been in a wheelchair and in fear of busting open stitches I probably would have snatched the weave off that womans head. Told her we just drove up from Wilmington and son had been lifeflighted.....no change. (she did redeem herself later, but I still give her dirty looks). A doctor came out shortly after and asked the receptionist if Riley's parents had been seen/heard from and she said we were in the waiting area and the doctor seemed shocked we were out there (as in....why aren't they back here with baby, etc). Anyway....doctor came out, told us he had NEC which we already knew, and that the surgeons had been by to evaluate him already. They believe we need to take a "wait and watch" approach. Keep him on the antibiotics (several of them) to combat the infection in his "gut" as they say and take xrays every few hours to check on condition of his intestines and any sign of a perforation. No feeds for at LEAST 7-10 days (and that is if he maintains current status), and any change whatsoever could see him whisked off to surgery to remove the diseased bowel. He is still ventilated (machine breathing for him) but is comfortable and all his breathing/heartrate/BP are good. Later, they switched to a different type of ventilator to help lower his carbon dioxide number. We actually got REALLY scared prior to this because his breathing was SO slow, that it seemed like if he wasn't on the vent, he would stop breathing. Turned out, since we have only seen him breath really fast and ABnormally since birth, this NORMAL breathing rate looked alarmingly too little. Needless to say, when i finally got up the nerve to ask about his breathing rate and found out THIS is how he SHOULD look when breathing, we felt much better about that.
We are staying AT Duke tonight, in a special parent room. A Social Worker will come see us tomorrow as they do all ICN parents and since we live so far away, we may be given accomodations at the Ronald McDonald house (if there is room). Otherwise, we will be given help finding a hotel or something. Not sure yet. This room has chairs in it, and very uncomfortable ones but i am just thankful to be able to sit down for a while and rest. Jay is in the ICN as we are wating to hear back from most recent stuff, but I had to get somewhere and sit. I'm right outside the ICN. It's a room with a door though so at least it's private and there are chairs and a bathroom and I can pump in peace overnight. They will store what I pump in freezer here so WHEN his belly is doing better, he can be started eating that.
After about 5 minutes in this NICU or ICN whatever they call it here....we were VERY much missing our NICU back home. While I know that ours is brand new and is unlike other in our state with each baby in it's own room, I still was not prepared for the way things were up here. 4 babies per room, and the room isn't MUCH bigger than Riley's room was at home. So it's snug. And LOUD. SOOO loud. I had to ask Dr's and Nurses to repeat things several times because so loud in there with different machines ringing and alarming that I couldn't hear them. So the environment alone is upsetting. But he is surrounded by some of the best doctor's in this field so trying to remind myself that CONSTANTLY.
Travis doesn't know about this yet. I will be calling him tomorrow morning to tell him. I expect him to be pretty upset. It's hard being up here, several hours away from him as well. We know Riley will be here at the ABSOLUTE, EVERYTHING GOES PERFECT scenario, 1 week. That is being SUPER optimistic. So not sure if Jay will go home and just me stay up here (which would have to be a hotel right across the street cause I can't drive or anything), or what we are going to do. We can't abandon Travis, that is for sure. He needs us too. Such a bad day. One never saw coming.
So that is the latest as of right now.
Oh, and I will NEVER EVER look at the lifeflight helicopters landing or taking off from work without wanting to throw up again. EVER. I thought I had experienced pain in my life before but watching a crew load up your baby in the back of one and take off and fly away....there are just NO words and I keep hoping and praying that I'll just wake up from that nightmare.
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Lindsey
Lindsey
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