If you ever find yourself in the NICU, you need to know one thing: the nurses run this joint. On Saturday, our nurse Lindsay made some things HAPPEN. That day we got an entirely new team of doctors for both cardiology and the NICU which really means we started over at square one. Ugh. Lindsay overheard some conversations we had with these teams, pushed for all these different teams of doctors to meet together daily, and hinted that she'd get the social worker involved if they didn't pull their act together. Now we have one visit of rounds instead of three. Fifteen doctors shuffle in to our tiny room and talk ALL AT ONCE about Emily. Before, I was passing messages between the teams and felt like I was the only one on top of Emily's plan. Now, I actually feel like they're steering the ship. Lindsay, seriously. You saved us.
Last Friday, we found out that Emily also has a significant leaky valve, which is not associated with her heart defect. It may or may not get fixed at her open heart surgery. If it's able to be managed, it sounds like they prefer to wait until kids are fully grown before considering surgery. Ok, now have we found all the heart anomalies?
Over the weekend, I wrote two blog posts and didn't publish them because they were not exactly uplifting. The NICU is tough, people. The doctors start to trickle in around 8 and don't stop until late afternoon. This makes catching up on sleep a joke. Last night the nurse didn't wake me for her 3:30 bottle, so I got to sleep for 4.5 hours straight. I wanted to hug her. I can tell what nurses are also mothers. They understand the grind of waking every 3 hours around the clock to bottle and pump.
Things have been looking more positive the past day or so. Emily is on two doses of lasix a day, and the benefits are showing up - she is finishing more bottles! Yesterday 65% of her total daily intake was by bottle. Our ticket out of here is two straight days with no tube feeding. She's gotta do it all.
Tomorrow marks two weeks in the NICU. Whew. I keep telling myself we won't be here forever even though sometimes it feels like we'll never get home.
In the meantime, Jared and I have been belly laughing a lot at the stupidest things. Maybe it's because of your prayers. Or maybe it's because he threw out his back and took a couple painkillers.
Yeah. Might be that.
Continued praying for Emily for healing and strength. For your rest and sanity and healing for Jared's back!! Glad you are keeping your spirit up with laughter. 😊 And that you are being a fierce momma for Emily. You go girl! - Marie
ReplyDeleteMarie, I love that you're praying for us! I feel like your prayers have a little extra octane in 'em!
DeleteHi Jill & Jared, Jack and I have been following your blog about sweet little Emily. Please know you and little Emily are in our prayers every day. Jill, you are an amazing Mom. The strength you are finding within yourself is incredible. I have no doubt God is right beside you walking with you and Jared through this medical journey Emily has been going through. Your blogs have been full of love, heart ache and your incredible strength to try to deal with the changes that occur daily to your own well being, Jared's and baby Emily's. Please know how special you have always been to Jack and me. We are there for all of you in our hearts and our prayers.
ReplyDeleteThank you so much, Karen!! I can't tell you how much I appreciate you and Jack's thoughts and prayers! It really means a lot. You two will always have a spot in my heart:) :)
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