Today was not the sweet sacred day we had hoped for and had shared with Charlotte years ago. Lily spent the day in the NICU with dad by her side, and I spent it itching in bed and decidedly out of it. In fact I am now blogging 20 minutes after taking a sleeping pill so I only have moments of lucidity left.
I was able to pump for her and get out of bed and take a wheelchair ride down to hold her for a few precious minutes. She doesn't look like Charlotte, but there are similar characteristics--I see mischievous pointed eyebrows coming in and although I haven't really seen them in person I hear her chubby little hands bring back sweet memories. Lily had a bath in the NICU and spent her day under the warmer. She is having oxygen forced through her nose via high flow nasal cannula and was still satting low for most of the day.
Our families came up and I was able to see my girls whom I am so grateful for. Ella gave us loves and kisses and ate most of dad's and grandpa's hamburgers. Ava demanded to be held and gave our fingers a squeeze. Zar spent time shuttling different friends and family members to the NICU for a visit.
After one visit this evening he reported that her oxygen had been increased from 34% to 38% and then after the following visit that it was now up to 50% and she still wasn't doing well. We quickly arranged for Zar's brother Weston and his wife Steph to take our girls home to our house where they sleep best so we could stay here and have a "discussion" in the next two hours with the staff about what to do next. We talked about wanting to let my sister Allison see Lily as she jumped in her car today and drove 7 hours with twin babies because she needed to be here. But we didn't want to prolong suffering for Lily or for ourselves. When it's time, it's time. We prayed and decided to get an hour or so of rest before the big decisions came. We are still saying No to intubation.
We woke up at 10:30 with still no word from the NICU team, so Zar went down to check on her. Lily was down to 24% on her oxygen need and was sucking happily on a binky. They have plenty of milk to feed her tonight thanks to my stellar skills and Ava, who provided the crying baby noises which kicked the milk makers into high gear before it was really time. So Zar went home to let Steph and West go home, and I was given an ambien and a chance to pee on my own.
It has been a discouraging day. We are scared and still don't know what to do, what the next step will be. We are trying hard to place it all in God's hands, but sometimes it feels like He is giving it right back saying "No, this one's all you." I am hoping that Joy cometh in the morning. I want to see her eyes, I want to look at her hands, I don't want to be in pain but I don't want to be so groggy. I'm scared, I want to go home, I really need angels standing by tonight. There are so many of you out there, throw me a prayer, not that Lily will be miraculously healed or taken quickly from us, but that we can endure what is right for Lily. This is her turn and I need to stop pushing and just let her be what she needs to be.