My Belly Has Two Buttons

The days are long but the years are short. How true this rings to any parent. The days were long and are still long as we continue on. They are grueling. My baby was diagnosed with severe obstructed sleep apnea. Each time she napped, or slept at night she was on oxygen. We strapped a portable oxygen unit to her stroller and we kept going. We planned to show Livi the world, but what would she actually see?

Livi would not consistently track objects. It was time to see the pediatric ophthalmologist. Livi’s eye exam appeared normal, her precious MRI also showed no concerns for vision. After a brief test we were informed she does have some vision, to what extent we would later know. But she could see. She was diagnosed with DVM, delayed visual maturation. Her ophthalmologist wanted to see her in six months for a follow up. This was comforting, delayed. A delay could be overcome, please God give her vision. “God it’s me again, give my heart peace to understand and cope with the baby you have given me.”

With her vision delays, she also had growth concerns. She was not gaining adequate weight. Her pediatrician recommended a G-button feeding tube in her belly. What Livi would not drink by mouth, she would be fed in her belly. Her feeding tube is also described as a button, her tiny body would have a cute belly button and a feeding tube button.

As Liv was also being seen by ENT for the Laryngomalacia concern. This was the underdevelopment of her larynx. There was so much inflammation present in her throat from severe GERD, reflux, that he did not recommend airway surgery. With inflammation comes poor healing. He recommended we see a pediatric surgeon for what is called a nissen fundoplication. This is where the top of one’s stomach is tied around itself, preventing acid reflux. After treating her GERD we would reevaluate for an airway surgery.

We consulted a pediatric surgeon and he recommended we proceed with treatment. Livi would have a nissen fundoplication, usually referred to as a nissen, and g tube placed. The date was set. The Google search for comfort continued.

At this time Livi was almost five months old. She had no head control, she could not reach for toys, was not putting weight on her legs, very very far from sitting unassisted or crawling. She was simply my arm baby, my newborn baby yet five months old. Therapy was recommended by her pediatrician. We had set dates for after her surgery for evaluations in physical therapy, occupational therapy, and speech.

Surgery day was here. A life changing surgery. A surgery that is performed millions of times around the world each day, but to our family and our baby was life changing. There was concern of Livi waking after anesthesia. With her unknown genetic abnormality and airway obstruction there is always concern with what “could happen”. Livi underwent surgery and was out in a short time. She woke up from anesthesia. She was still with us. Several days were spent in the hospital being monitored post operative, each day a new side of Livi came to light. She was more alert, she was moving more. I was in the process of mentally preparing for my baby to never walk. To push her in a wheelchair for my lifetime, would this change?