Dear Prayer Warriors,
Loving Anna is hard when two younger siblings are always jockeying for my attention and I like to escape for a scroll on my phone here and there. Before I get to Anna, I need to address the persistent crying from Renee and the repetitive questions of Simon. I wonder if Anna feels like she gets leftovers of my best because she can’t wrap herself around my ankles and demand my attention like my other two can. By God’s grace, I have learned to announce to Renee and Simon that right now I’m going to be spending time with Anna. it’s hard to connect with planet Anna. That sweet girl is always available for me but I am often giving of myself elsewhere. To be clear, I’m talking beyond Anna’s caretaking needs, more like soul care, discovering the personality she has and the things she loves. With Anna the checklist of cares will get done but have I loved her or just served her? I want to make Anna feel listened to.
By God’s grace, there are times that I stop everything (drop the phone), and try to envision life from Anna’s point of view. What is it like to lay on a mat and chew the outer part of the right thumb while looking at the same piece of ceiling for 5, 10, or sometimes 45 minutes, day after day? At times I attempt the art of imitation.
Today, I read the Bible to Anna and had some time with just her and it was blessed. I sat her up and presented the Gospel to her. I remember doing that one other time while she was in the NICU. We marveled at the gift of salvation offered to all sinners, the undeserving, the weary, the brokenhearted. We thought how a Just Father gave His Child for the ransom of many because there is no other way. As Anna and I lingered there, I reminded her what God did for her and how God has given her the choice to hope in Christ for all things including healing. Suddenly, Anna went on and on and on, Oooing and ahhhing making all kinds of vocalizations for a couple of minutes at least. We prayed and thanked God. Anna isn’t overly vocal, she coos and makes noises here and there, so this was exceptional, I looked her in the eye and let her finish.
This week I had a realization of answered prayer! Anna has been showing lots of progress at night. Even as I write this, I remember this was one of my most recent and reoccurring prayer requests. It is exciting to share God’s mercy with you. The saliva and mucus buildups that she deals with about 2-5 times at night have become self-managed. Generally, these episodes included foaming/drool at the mouth, gasping for air, large volumes of spit-up, air swallowing and remaining awake for hours. The more involved occurrences included panicked breathing, aspiration, suctioning, repositioning, and change of clothes. These episodes have gone away. Praise the God who heals.
God has been layering many good things in Anna’s life. We have only had one viral illness lasting less than two weeks all winter. Anna has gained a pound and has had consistent bowel movements. Our night nurse has been helping with blending fresh foods to supplement Anna’s organic formula almost daily. we recently adjusted her saliva-reducing medicine and the new amount seems to have helped as well. Also, Anna has had a deeper sleep; so much so that when we give her medicine and refill her BIPAP machine with water at 3:30 AM she doesn’t even wake.
Beyond all these exterior helps, Anna is showing increased ability to manage the mucus build up herself. She still has bouts during the nights when I hear her chewing and turning her head from side to side, but it isn’t escalating. Generally, those are the red flags for me to hop into action. Lately though, I’ve stayed by the video monitor to see her resolve it and it passes within 5 minutes as she never fully wakes up. We are getting some restful sleep y’all. Go Anna!
Please Pray for:
-A nurse of God’s choosing perfect for Anna, to supplement our overnight care, right now we have three nights covered.
-A greater sensitivity of how to spend time with and engage Anna relationally, as a family and one on one. How can we communicate more effectively with her.
-Continued mercy and healing of Anna, ushering in ability and glory to God.
-New therapies, passionate therapists, and exercises that open doors and unlock greater potential.
-joy and lighthearted laughter to season our days together as a family that we would be caught up in the nearness of the Holy Spirit and love each other well.
-continued equipping by the Holy Spirit to use Anna and my family for the glory of Jesus Christ.
