Meet the Graham Family

By SUSAN GRAHAM

Paisley was 1 pound 12 ounces when she was born. As a 24-week micro preemie, the medical staff who delivered her explained to her birth mom that she likely wouldn’t cry, but she did. Paisley was life-flighted to the closest Level 4 NICU, which was at Arkansas Children’s Hospital. While she was there, she suffered a grade 3 and 4 intraventricular hemorrhage (IVH), which is a brain bleed.

Three hours away, her recovering birth mom called every day for updates and checked the live feed the NICU provided. Because of the brain bleeds, Paisley developed hydrocephalus and needed a shunt in addition to airway intubation and a feeding tube. Her birth parents visited her whenever they could but they decided they were not ready to parent a second child and made an adoption plan.

In October of 2015, we received an email from Paisley’s birth mom telling us about her beautiful daughter. She explained that Paisley would need brain surgeries throughout her life because of the hydrocephalus. The doctors were also telling her that Paisley could develop cerebral palsy, and may never walk, talk, eat, play, or go to school. As we read her emails, Matthew and I felt a powerful peace that this was our daughter. Her diagnosis was scary but we knew that Paisley was supposed to be part of our family, too.

On November 30, 2015, we met Paisley for the first time. Arkansas Children’s Hospital has a ward-style NICU with 6-8 babies in each room. The nurse leading us through the NICU didn’t know which one Paisley was in and we had to walk through a few rooms before we found her. She was tiny. Our older two children were over eight pounds when they were born but Paisley was only four pounds when we met her. Arkansas Children’s Hospital didn’t have enough warming beds so she was swaddled, wearing a hat because she couldn’t stay warm. We were told to bring her clothes because the hospital didn’t have enough for her.

Our adoption lawyer wanted to come with us that day but we said no. Having a lawyer present when meeting your child for the first time felt cold. We wanted to count her toes and ask her if we could be her parents. Nurses and doctors came through, telling us about her medical condition. We sang to her and Matthew told her she needed some more sass. After two days of visits, she started turning her head to look at us when we walked into the room.

On December 3, 2015, we stood before a judge and vowed to love her for the rest of our lives. If you’ve never been to an adoption proceeding, they can be fairly dry. The judge asks some questions and then says something like “The minor child formerly known as Paisley ___ _____ will now be known as Paisley June Graham. Her records are now sealed.” We prefer something more personal and make this promise to her each year: “We, Matthew and Susan, take you, Paisley, to be our daughter. To hold from this day forward. We’ll rock you through the night and kiss every ouchie. For better or worse, we know that things won’t always be great, but we will always be here for you. For richer or poorer, you might not always have the coolest item, but you will always have a warm, safe bed, plenty of food, and lots of love. In sickness and in health. Oh baby. We know that there is going to be a lot of sickness with you. We are going to hand you over to far too many surgeons and sit in waiting rooms, anxious for news. But we are going to be your advocate. We are going to make sure you have every chance to live this amazing life, no matter the diagnosis. We will fight for you the rest of our lives.”

We needed a way to transfer Paisley from Arkansas to Riley Children’s Hospital in Indianapolis, but our insurance denied an air ambulance. While we were trying to find a way to bring her north, her shunt failed. We needed a miracle to get her to Riley so she could receive life-saving brain surgery. Our miracle came from an organization called Grace on Wings. They are based at the old Indianapolis Airport and are a charity air ambulance service. They only charge for fuel and maintenance. The $30,000 flight our insurance company was quoting would only be $5,000 with Grace on Wings. Their staff are medical volunteers from Indianapolis hospitals and are chosen based on the patient’s needs.

Paisley arrived on December 18, 2015, and received her shunt revision surgery on December 20. She spent the next two months fighting for her life before she was discharged on February 23, 2016, after 154 days in two NICU’s. The next few years were a jumble of First Steps therapists, specialist appointments, and emergency rooms. Paisley’s list of diagnoses included spastic diplegia cerebral palsy, hydrocephalus, chronic lung disease, a g-tube, cortical vision impairment, a large atrial-septal defect that required heart surgery, and pulmonary hypertension. I started singing “head, shoulders, knees and toes” in my head whenever doctors asked for her diagnoses. Paisley missed official milestones but created her own. She started rolling so she could chase the cat and take ornaments off the Christmas tree. The speech centers of her brain had been damaged by her brain bleeds but she started signing “music” and “more”. Signing turned into speaking and rolling turned into crawling. At three, Paisley took her first steps. We threw a party. When COVID hit, we decided to keep Paisley home to protect her. She loved preschool and making friends but we knew her lungs wouldn’t do well if she got sick.

When she turned 5, we were able to enroll her in a private kindergarten program to let her catch up a bit before public school. She made friends, came home singing songs, and got an occasional time out for playing bumper cars with the indoor recess equipment. That was also the year she needed two shunt revisions. The first was the day before Thanksgiving and the second was the week before school started. Three days after that revision, she developed epilepsy. Paisley experienced a 30-45 minute grand mal seizure and started to desat, with oxygen levels in the 80s.

There have been a lot of highs and lows over the past couple of years. Dashing to the elementary school in my jammies because Paisley has had another seizure is always a hard day. But, there are a lot of bright spots too. Paisley started writing her name, recognizes letters, and can tell you the sounds they make. She is excited to get her first self-powered wheelchair, which glows in the dark. Our older two children have nursing skills many veteran nurses struggle with. They know how to replace a g-tube, can handle a feeding pump by themselves, and are able to explain seizure safety to their peers. Most kids don’t have an IV pole in their living room but they generally roll with it, explaining it to their friends. Our lives look different sometimes but we don’t view that as a negative.

Paisley qualified for the Aged and Disabled waiver as a baby. It helped us pay for her feeding supplies, therapies, and hospital visits over the years. However, because of her medical needs, I couldn’t work. Making sure your medically complex child receives all of her needed therapies, feeds, and doctor’s appointments is more than a full-time job. When we heard about parent-attendant care, I was ecstatic. Matthew is an engineering manager and while he makes a good income, there were things we wanted to do and couldn’t afford. Paisley threw up every feed for the first 9 months of her life. The carpet has been cleaned multiple times but builder-grade carpet doesn’t hold up to that kind of use and needs to be replaced. While Paisley has hydrocephalus, a life-threatening condition, she was denied a Wish. There are trips we want to take her on and things we want to experience as a family. All of these things take money. We were going to sign up with a home health company but felt uncomfortable with them. They didn’t want to meet Paisley, were not clear about how charting worked, and didn’t have in person staff to answer questions. We did some digging and found Healing Hands Personal Services. Their in person staff answered our questions, wanted to meet her, and the president, Tim Paul, called us to give us his cell phone number. I love working with Lydia, the Medically Complex Warrior Coordinator. She’s always ready to help when our schedule changes or we forget to clock in for charting. The income we receive from parent-attendant care is life-changing. We’ve been able to take our kids to Disney World, make updates around the house, and save for some bigger dreams we’ve put off. Paisley has a better quality of life because of what we can provide through parent-attendant care and Healing Hands. The Christmas season is always an emotional time for us but we are grateful for wonderful Indiana groups like Grace on Wings and Healing Hands Personal Services for helping us give Paisley the best life possible.