Belle’s Story
We are HOME!!!
We found out officially on December 18th that Belle would need major surgery to correct her spinal curve. I didn’t want to talk about it. I told the doctor he didn’t understand and that she could not have surgery. “She doesn’t even wear Band-Aids,” I told him. I was in denial. I couldn’t imagine her going through surgery.
We tried bracing. We saw two specialists regularly with appointments that had to be within a week of each other every time. X-rays and then adjust the brace. We asked for prayer.
Scoliosis Progression
Her scoliosis progressed quickly despite those things, from a 49.9 to a 63. Beyond a 70 and adolescence, the surgery that she needed is no longer an option. We were running out of time. The orthotist told us that for the type of scoliosis she has, 20% of cases do not improve with bracing and no one knows why.
We thought the surgery would be in the summer but because of the progression the surgeon wanted it in February. The clock was ticking. April was the fastest all 3 of the surgeons involved could come together to complete the procedure.
She had Vertebral body tethering last Wednesday. At one time there were 14 people in her operating room – a large team to support her and witness the first person in Virginia getting a tether surgery with the company her doctor advocated for (more expensive but better quality because we need this to last). Tethering is still relatively new here, but much more popular in places like Philadelphia and our surgeon discussed her case with colleagues there before making the decision on which was best for Belle. Her orthotist asked if we wanted to travel to Philadelphia for her surgery but we felt confident with her doctor here and thought it would be even more difficult to be farther away from home.
Surgery and Complications
The surgery went really well and OT and PT had Belle up the very next day. She was in a lot of pain from a chest tube but otherwise was okay. She was sitting in a chair, opening gifts, watching a movie, and visiting with family.
The next day things changed suddenly. We found out she had Rhabdomyolysis. Her oxygen started dropping and they tried three different types of oxygen with no luck. She was on a ventilator and stayed on it for days. She was partially sedated for this because she was fighting against the oxygen when all of this happened. One of her lungs had collapsed. Her right and left lung each had unique problems that had to be solved.
This week has been a roller coaster.
Special Thanks
Our Village
We are so, so grateful for every prayer that was sent up for our girl. A special thanks to Lizzy, Susy, and Anna for looking out for our other girls at the last minute when my dad became sick. You guys made it possible for Nathan and I to both be at the hospital with Belle. My sister was originally planning to come help us but needed to stay in N.C. To my siblings and their spouses for handling things at home for my dad and all the family and friends who have visited both my parents in recent weeks.
To my parent’s caregivers who make all of our lives better and have become more than just a job title, but friends and a part of our family. You never forget people who treat your parents well. To those who offered to drop everything to help if needed. All those who checked on me (I still haven’t gotten to all the messages but I do appreciate them). To my neighbors who were on standby for the girls when there were some gaps I didn’t have filled. For the snacks, gifts, and flowers brought to the hospital by my sister and her family, and by my sister-cousin. There were even two surprise Amazon packages waiting on our steps from my cousin Kristen and her family and our dear friend Naomi (AKA Dr. Howard) and her husband when we got here.
To the prayer teams at Happy Home Pentecostal Church in Tyner, N.C. and Destination Church in Hopewell, V.A. – we are forever thankful to all of you.
My Little Family
For our oldest, who had to hold things down when we needed her to and for our youngest who took it all in stride but missed us very much. For my husband, who was fantastic, the very best helper in the absolute worst week. When you can look at someone and know that they love the person you love so overwhelmingly too, you are just filled with thankfulness for who you have been blessed with. Belle’s doctor said to me, “I don’t think I’ve seen you leave the room since Wednesday,” and I hadn’t but I was able to stay beside Belle because my husband brought me food and coffee and did whatever we needed. He also tried to get me to take a break. He slept on a mattress on the floor in Belle’s room last night so that I could get some sleep without worrying about her.
Children’s Hospital of Richmond at VCU
And finally for the doctors, nurses, therapists, and volunteers at the Children’s Hospital of Richmond at VCU. They were a blessing. They supported Belle, and us, through a nightmare. I can’t say enough good things about them. Every morning she had an X-ray by 5:30 and soon after all of the doctors were coming around. There were so many teams of people checking on her every day, often multiple times in a day. They included us in their rounds each morning, and occasionally at night too.
When Belle first arrived, they had her bed filled with gifts. A handmade quilt and pillowcase, a silly cat squishy, coloring sheets and markers, a journal, a large Squishmallow, and a large craft set. They asked her what her favorite music was to drift off to sleep for surgery, and she introduced them to Forrest Frank. The Ronald McDonald cart showed up with toys once she was settled in her room. A golden retriever named Homer came to see her.
A Difficult Week
Belle did so many incredibly difficult things this week. From major spinal surgery, IVs, daily X-rays and blood draws, having a chest tube and more removed while she was awake, moving through major pain to regain her strength with therapy, numerous sessions of chest percussion, two types of spirometers, and one entire night of choking and coughing up mucus while having a ventilator on with high pressure air coming through a tight fitting mask which terrified me. I stood next to her and watched. I pulled the mask off only after she started to spit up because if I took it off too long there was the risk that her progress would go backward and her lung would not be restored.
This particular night I was alone with Belle because my husband had to go home to check on our other girls and get them to school. I made it through with the support of the VCU team. I will never forget hearing “life saving measures are at the door” when her lung first collapsed and “if things are still the same tomorrow, we will discuss a feeding tube.”
Continued Prayers
Please keep us in prayer for the days ahead. We have wound care and bandage changes for multiple incisions, physical therapy, checkup appointments, and homebound school for Belle to finish out the year. Her recovery time is 4-6 weeks.
Many of you prayed who don’t even know us. Many of you prayed without even knowing why we were there. We thank you, and we thank God. It feels good to bring our girl home.
I love you all ❤️.