Our world is ever-changing! Since the last update from us, we’ve been back in the NICU for a few days, Abbey turned 3, and now we’re back home and just started part-time, in-home nursing.
In the hospital we addressed Pearl’s breathing troubles a little more in-depth. We talked about the possibility of a tracheostomy and decided against it for now. We got more comfortable using a few “tools” to help her breathe when she has trouble. While there, we also realized she had a virus (fever, snotty nose, upset tummy), so waited until she was over that before coming home.
We also talked more in-depth about our goals for Pearl’s care and developed a team to support her health and us, as caregivers. Her team includes a pediatrician, neonatologist, ear nose & throat specialist, neurologist, and a private-duty nurse. We are pumped! These guys are all great at what they do, and all are willing to help us figure out how to help Pearl live to the fullest. We will never be out of the woods, but our only option is not to sit around and keep her comfortable, as we were first prepared to do. Her team and we are working on a more pro-active and sustainable care plan and that’s so exciting!
Since coming home, Pearl has had several really good days. Her seizures seem to be less frequent, she’s tolerating the nasal stint better, and she’s resting better. It seems that we’ve been on a never-ending roller coaster with her health and our emotions, but this week is going well and we are so thankful!
Our life and Pearl’s story aren’t just about us. It’s a privilege for us to all be a part of God’s bigger story, and thank you for being so supportive with your love, prayers, food, donations towards a van and sweet honest letters to Pearl (golly, these sweet letters mean so much!) It all means so much to us! Thank you for understanding if I don’t return messages promptly and for trying again, because I really do need you in my life.
Little Pearl has gotten a bit of press recently, and that blows me away. Eric and I are not very impressive people, so our lives don’t usually draw much attention. We have made decisions the only way we’ve known how, and we have been carried by the grace of God. We are often tired. Brennan and Abbey sometimes have to miss out on fun things. Sometimes I get so wrapped up in arranging details that I forget to soak up the miracle that is my daughter’s life. Yet we continue to be carried by the grace of God. He is faithful and we are grateful. Thank you for participating in the story God is weaving through our daughter Pearl, our family, and all of you. It is a beautiful thing.
I’ve been trying to go through some of the scriptures from Pearl’s quilt for some meditation lately. I haven’t been so good at just picking up the Word and reading lately, so I figured that the verses you all shared for her quilt was a good place to start. These few have particularly stuck out to me:
Peace I leave with you, my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:27, ESV)
The Spirit of God has made me, and the breath of the Almighty gives me life. (Job 33:4, ESV)
He is before all things, and in him all things hold together. (Colossians 1:17, ESV)
May we continue to be an encouragement to each other!
Many thanks and much love,