Saturday, August 13
Wren's doctors consulted and decided that they weren't ready to recommend heart surgery for her PDA (murmur) yet. It is causing issues for her, but they'd like to give her another round of neoprofin before they decide to do surgery. We hope that the issue resolves itself quickly so that she can get back to eating food and growing. Wren is also back on phototherapy today after being off it for a few. It's not surprising that so many things in the body have difficulty becoming regulated in a 26 week baby, after all she wasn't supposed to be fully ready for another 10 weeks or so, and we are basically trying to kick start all of her body systems that would otherwise be basically nonfunctional at this point like the digestive system.
Avery's heart murmur is being watched and she is now on her first round of neoprofin, so between her stomach issues last week and the medicine treatment now which slows blood to her gut, she won't be getting food for a while either. Avery finally got off phototherapy for the first time today and was swaddled. Like her sister, she was loving it and was incredibly relaxed. She did keep peeking her eyes open at us while we talked to her today which was nice. I am told that the blood in her brain has likely done the bulk of its damage by this point. Another head ultrasound will be done for her tomorrow to ensure that things haven't gotten worse or changed in any other ways. The big things they will be watching for are whether the bleeding turns into a stage 4 on her left hemisphere where it was a 3, and whether she is showing any signs of hydrocephalus. That last one would be pretty scary, it would mean that there's fluid building up in her brain that is potentially not moving like it should due to the blood, and would potentially need to be treated with a surgically inserted shunt that could physically get fluid removed before she would start to have any other adverse symptoms.
I don't know what else to write today, other than thanks to everyone out there for being there for us. You people are legit.
Avery and Wren - A blog about our twin girls during their time in the NICU.
I am glad to hear they are going to wait on surgery. We will keep praying for the girls. We love you guys
ReplyDeleteKevin- thank you for doing this blog to keep us all posted on your beautiful girls. You are all in my prayers. It brings back so many memories for Paul and I. Two of our triplets required PDA ligations after not responding to the medication. Both improved greatly afterwards. Having babies in the NICU is such an emotional rollercoaster.... the doctors and nurses are amazing but I remember how the atmosphere changed when any baby was doing poorly- even when it wasn't one of ours it was emotional and hard. Focus on the positives- even those tiny improvements are important. Every day in the NICU is one day closer to discharge! Take breaks and enjoy your kids at home. I remember feeling so torn between wanting to be home and wanting to be at the hospital. But some home time gave me balance and charged me up emotionally. The nurses can watch over those little girls and let you have a breather now and then, especially while you are waiting to be able to hold them. I think about you and Shannon every day! Miracles abound in the NICU!
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