Neural Complications Day - Veyla's Story
When my husband, Kelly, and I started out for our vacation in the Outer Banks of North Carolina, we were looking forward to a week filled with lots of rest, laughs, & family fun. Little did we know we would be a part of something truly incredible. We arrived in the town of Salvo on Saturday, May 11 and met both of our parents, my sister and her family at the beach house. The next day was Mother’s Day and I was surprised to receive my first Mother's Day cards and gifts and made the comment "I haven't even experienced the pain of labor yet!" Be careful what you wish for...an hour or so after dinner, a strange pain started that I couldn't ignore.
At midnight, Kelly and I made the first of two 30 mile drives to the closest hospital, The Outer Banks Hospital in Nags Head. The diagnosis was dehydration (which is a common problem with pregnant women at the beach), so we rested all day Monday, but the pain still persisted. Monday night we went back for a second hospital visit that lasted a bit longer than expected... They kept us overnight and around 9:00am on Tuesday morning we went for an ultrasound, just as a precaution. We had already decided that once they let us leave, we should probably head back to our home in Greensboro, NC, to be on the safe side. No one thought there was anything to worry about, but the ultrasound showed a different story.
In a matter of 10 minutes, we were told the baby would need to be delivered today, but I would first be transferred to Norfolk, VA by ambulance. A few short minutes later, we were told that I would be flown by helicopter. Another minute went by, the doctor did a quick exam, and said the baby would need to be delivered immediately. I was hysterical during this entire time, but Kelly was able to stay strong and keep calm in the center of the storm. He managed to make a quick call to our family who left from the beach house shortly after. Kelly had to say goodbye to me as I was rushed to the operating room. After an emergency C-section, Veyla Laine entered this world at 9:40am, Tuesday, May 14 at15 weeks early. Weighing only 610 grams (1 lb, 5.5 oz) and 12.5 inches long, she immediately won over the hearts of everyone around her. The doctors & nurses that worked on Veyla and I were absolutely amazing. Once I woke up, Veyla, Kelly & I had our first family meeting. I reached into her incubator and touched her tiny foot; I could not believe she was here! Luckily our family made it in time to meet her too. How incredible that we were hours away from home, just delivered our baby 15 weeks early and yet our family was there with us! Within a few short minutes, Veyla was whisked away and I wondered if this was all just a dream.
Veyla spent 4 months and 6 days in the Children’s Hospital of the King’s Daughters (CHKD) NICU in Norfolk, VA. During her time in the NICU, there were many ups and downs – a rollercoaster, as described by many. In her first week of life, we were told her lungs were severely underdeveloped, so she would be on a ventilator for an indefinite period. The traumatic delivery caused bruising from head to toe, as well as a very deep incision around her left wrist. She had a large PDA (opening in her heart) and suffered a collapsed lung that resulted in a chest tube.
The most troubling news we received in that first week was that she had severe brain bleeds (IVH). The bleeds are rated on a scale of 1 to 4, with four being the worst. Her bleeds were bilateral Grade 4, affecting both sides of her brain. The NICU doctor went on to explain this could have a huge impact on her development, depending on the extent of the damage. He said while some preemies have developmental delays in general, they usually catch up around age 2, but in her case she would most likely have severe delays or never catch up at all... We were then presented with a choice that no parent should ever have to think about – do you want to continue her care? Our reaction to this question was one of shock, sadness, and then anger. How do they know what kind of life she could have?! From what we had seen of Veyla so far, she’s a fighter! Every day a nurse talked about her strength and tenacity. We didn’t need to leave and mull over our decision, both Kelly and I were strong in our belief that whatever God wanted would be done and it was not our place to change his plan for Veyla.
After one month of Veyla’s life, she was off the ventilator, the chest tube was removed, the PDA closed, her wrist healed with no seeming impairments, and her bruises faded to show beautiful baby soft skin. She still required supplemental oxygen using a nasal cannula, but we could tell that would eventually be unnecessary as well. The brain bleeds resulted in a condition called “Hydrocephalus” in which she required a VP Shunt to facilitate the flow of cerebral-spinal fluid from her brain throughout her body. This was a major surgery, but nothing our little girl couldn’t handle!
We are forever grateful to the doctors, nurses, and hospital staff at CHKD for helping our tiny angel beat the odds and after 130 days, we finally went home.Today, Veyla is 11 months old (7 ½ months adjusted), weighing in at a whopping 17 pounds! She came home from the NICU with supplemental oxygen, but we’re happy to say she has been breathing on her own for over 3 months. She has many doctors, specialists and therapists (15+) keeping tabs on her, all of which continue to be surprised by her overall health. Her biggest obstacles have been feeding issues with complications made by acid reflux, tightness in her muscles, and a minor hearing loss. Veyla may not be able to sit on her own or hold her bottle, but she wakes up with a smile each and every day. We can see in her eyes that she’s not done fighting yet! We can't believe what an amazing miracle we get to witness in her every day. She is our little princess, our light, our hope, & our love. ~ How wonderful life is, while you're in the world ~