One Month Old and Some Reflections

We survived our first week on our own! It was a good week at the NICU and at home. Cora is eating and sleeping, Rose is being a helpful big sister, and Lily is finally gaining some weight. She's up to 4lbs and 13oz now. Almost 5lbs!

As Joe mentioned, the plan is to do Lily's gap study at the end of next week. Thursday or Friday I'm assuming. We have really been looking forward to this procedure because it will hopefully give us an idea of how much longer she's going to be in the NICU. It's not a surgery, no incisions, but she will have general anesthesia.  Dr. Elliot will put contrast down her replogle and contrast through her G tube site and then take xrays. The contrast will show how far apart the two ends of her esophagus are. Then we repeat the procedure in another month to check how much closer the two ends have grown. Once it's 2cm or less apart,  he can do the surgery to connect the two ends.
I talked to a nurse yesterday that took care of another girl just like Lily recently who was discharged home just 2 weeks after the surgery.  She had been in the NICU for 6 months.  It was really nice to hear about someone in the same boat as us, who got through this and is doing well now at home.

The girls celebrated one month on Thursday! I can't believe it's been one month already. It's all kind of a blur to me. I'm just starting to process some of my emotions. I hope you don't mind if I talk (or write) through some of it here.

My faith is really important to me. This last month, I've been in a place spiritually that I've never been before. My faith was never in jeopardy and I never doubted God's love for me, but I had and have some huge questions that I don't have an answer for. In fact, I'm not sure I even want to have an answer right now. I don't want to talk about God's will or His plan. I don't want to talk about how the girls were knit together in my womb. How could His plan include Lily's pain, and how could He have knit Lily together this way? These are too painful to think about, so I cling to simple truths that I do know. I know that God is love and that He loves me and my family. I often think about these statements of faith from a Beth Moore Bible study (hi Tas Philas!).
God is who He says He is. God can do what He says He can do. I am who God says I am. I can do all things through Christ. God's word is alive and active in me.

I don't want to unpack the big questions, like why yet.. or maybe ever. But I do want to remember who God is and spend some time just in His presence. I think that's the way forward. I don't need all the answers. I just need Him.