First of all, Judson and I deeply apologize that we haven’t posted an update since leaving the hospital in February! I know many of you have been wanting to hear how sweet Junia is doing. We can’t emphasize enough how it was only through the communal care we received that we have been able to manage any of the last year: we have been flooded with love and will be forever grateful to each of you. 

The short answer to how Junia is faring is that she’s really doing so beautifully and so much prayer has been answered. The last 8 months have been an amazing season of healing and growth for all of us. Junia has been transformed from a tiny premie baby to hearty, happy and very chubby 19 lb baby! She’s got the sweetest temperament and has the biggest and quickest dimply grin—and big blue eyes. She has a resilience of spirit that is already very apparent. She has undergone so much in her young life already and yet she seems so unruffled and content. She has had more doctors appointments in the last eight months than I had in the first few decades of my life, yet she spends most of them just smiling at doctors and nurses. Right now, her great loves are being held and interacting with the people she loves, being outside, chomping on fingers (teething!) and getting lickdowns by Jayber, our pup. She is on breast milk and her first solid foods and seems to have an amazing appetite and a great immune system: she’s evaded all the many bugs Lily brings home from church nursery! 

Medically, there has been so much good news (and answer to prayer): she does not yet have hydrocephalus (fluid on the brain), after several more MRI checks since birth, which we are thrilled about. So she has not needed a shunt or ETV brain surgery. We will continue to monitor until she’s two, so every check we have as she grows is a victory. And even if she does develop it, it’s much better if it develops when she’s older and it’s easier to operate. But we continue to pray for no fluid on the brain! 

Urologically, we have had several diagnostic procedures done on her bladder and kidneys and while she does have a neurogenic bladder (the nerves that control the bladder and bowel are damaged), she has not needed to be catheterized in order to pee and her kidney health seems good. She is quite incontinent, but this is the easy season since she’s just a babe in diapers. As she grows that will be more complicated. One specific thing you can be praying for is that she would no develop something called “tethered cord” (when the spinal cord gets stuck to her scar tissue) which could cause greater damage as she grows. 

We qualified for free at-home physical therapy and occupational therapy through the state (a program called early intervention) and so she’s had wonderful therapists start to come three times a week to help her learn to roll over, sit up, crawl, and (hopefully!!) walk with assistance. We are also planning the laborious process of applying for disability-based Medicaid for her, which is a bear to get, but once we do, she’ll have it for life. Please pray we are accepted the first time we apply. 

Lily loves “her baby Junia” and has been adjusting to be a big sister, though sometimes the jealousy monster rears her head. She’s been a trooper through all of this and we are so proud of her. On our weekly trips to Duke, she gets to visit with her grandparents and loves that time. She starts preschool in a few weeks and we are hoping that gives her a fun outlet for her very active little mind. 

Thank you for all of you who have prayed for my body and recovery as well. I’m happy to report that after a lot of help from friends, a therapist, a psychiatrist, doctors, a pelvic PT, a nutritionist, and an acupuncturist (truly takes a village), I’m feeling almost back to 100% in both body and spirit. I underwent 12 weeks of intensive trauma therapy through UNC’s amazing clinic for perinatal and postpartum mental health and it made such a difference, even though it was a lot of work. I’m particularly grateful to a friend who came over every week and held Junia for me so I could do my  sessions. My GI system is not all the way back to normal but it’s getting there and eating normal food again has been truly a joy. 

One of the most poignant moments for me was at the Easter vigil service, when we baptized Junia, the liturgy was taking us through the whole story of scripture using creative dance and music— and as we recited the story about the Israelites going through the Red Sea, we were encouraged to run through the deep waters made by the liturgical dance team holding big, waving pieces of blue fabric. As I ran through that with Junia in my arms, I burst into tears (which haven’t come easily in this season), thinking of the ways God got us through the very deep waters of that pregnancy and led us to safe shores at last. It was such an incredible gift for Judson and I to witness her baptized that night. She is such a miracle.  

Judson has been the rock, provider and wonderful father of our family, continuing to work and labor so that I can stay home. He continues to be Junia’s fierce advocate and best bud. In July, we were gifted with time in the mountains near Blowing Rock at a friend’s lovely house and had 12 glorious days of uninterrupted family time in our favorite Blue Ridge. It was a time to really move out of “emergency mode” into this new season of rebuilding and just delighting in our daughters and looking forward to what is next for us as a family. I’m attaching pictures from that trip. 

Tomorrow marks one year since the first 19-week ultrasound where we were first told she had a mass on her spine. Grieved and shocked that day, unsure what her diagnosis would be or whether she would even live, it’s amazing one year later to behold her smiling, radiant face giggle at her big sister. So many prayers have been answered. Thank you for praying with us and for us!