By Sharlene T. Smith, Sydney’s mother
Finding out that I was expecting my first child in Summer 2010 was bittersweet & time passed slowly because in February 2010 I suddenly lost my grandmother that had raised me, “My Mom”. It was hard to prepare being a mommy when losing your mother figure. Sydney is named after my grandmother. My family and I were excited but it was something that I wanted to share with the woman who raised me. The news of Sydney continued the cycle of life in our family! I teach college full-time; it was Fall 2010 and I was finishing up the semester and preparing my schedule to be out of work Spring 2011.
My pregnancy was rather uneventful until that time. Being over 30 I had an increased number of doctors appointments and evaluations, but everything was normal. On Saturday, Dec. 11, I had attended my first baby shower on in Atlanta, Ga.
Sunday, December 12 – Returned from Georgia with all her gifts.
Tuesday, December 14 – The semester ended.
Thursday, December 16 – at 3:01 a.m. my water broke at 27 weeks.
We headed to Gaston Memorial where my doctor happened to be the on-call Dr. After running some tests she explained to me it was amniotic fluid and that there was no way to stop it. I would need to be transported to CMC Main because Gaston Memorial only took care of baby’s when they were 29 weeks and they expected delivery 24-48 hours after your water broke. I was confined to the bed from that moment until my delivery time. I was given a steroid to assist with the development of her lungs. My doctor gave me the stats of how strong “little black girls” were when it came to premature birth. None of this was assuring at the time.
It happened to be icy as I was transported. Winter 2010 was a snowy, icy winter for NC.
When I arrived at CMC I was placed in a labor and delivery room and after 8 hours, moved to another room where I stayed for until delivery. My family came in from Atlanta to support me and be by my side as I was poked and prodded. They added the inflatable casts on my legs to help with circulation and I was given another steroid shot to assist in lung development. When the baby’s oxygen level got low, they added an oxygen mask to me. It was uncomfortable but the doctors kept telling me they were going to “keep me pregnant” as long as they could so I was in it for the long haul. Well, I thought I was…
The last test was done about 2:00 a.m. on Dec. 18, 2010. It was the 30 minute test to check for activity. It seemed like it lasted for 3 hours. The test started with one nurse, more nurses began to enter the room, then doctors, then anesthesiologist asking when the last time I ate. Things began to happen fast. I had lost almost all the fluid and she was almost in a vacuum seal and her heart rate was dropping. I was taken for an emergency C-Section STAT!
On December 18, 2010 at 2:32 a.m. Sydney Lucille Alston was born. She was not crying, and I kept asking her why. One of the nurses had the heart to say, “They are working on her,” and then my finance Michael started saying the same thing. I then heard someone say, “We are pronouncing Baby Girl Smith at 2:32 a.m.!” Imagine the dread of hearing that term, the confusion, the pain, the hurt. Later I found out that is how they announced her into the world. YIKES! Someone needs to find another term or a way of doing things. This was not a comforting statement to a mother of 27 weeker.
She was born at 2.0 lbs and 13 inches. We stayed Levine’s Children’s Hospital NICU for approximately 80 days from December 18, 2010 – March 5, 2011.
We spent her first snowy Christmas in NICU, we spent the day as a family at the hospital, she’s our greatest gift. Sydney’s birthday is exactly 7 days before Christmas, and we work really hard to ensure both of those events are distinctly celebrated separately for her.
I got the joy of holding her and providing Kangaroo care on December 31, 2010 – January 1, 2011. What a way to bring in the New Year. She was feisty and developing her personality even then.
I stayed in the hospital until I could, and when I went home I was there everyday for her cares, Kangaroo care, feedings, every chance I got.
The hardest day for our family in NICU was on January 5, 2011 my baby had a major setback, a pulmonary hemorrhage. I went in the West of NICU and saw the light on, which is unusual, continued down the corridor and her isolate was up with 3 nurse practitioners, 2 doctors and 2 respiratory therapists around her. I looked at her little 2 pound body and the sight was not a good one. I was blessed enough to stay at the hospital with her and not leave her side until after surgery.
On Jan. 9, 2011 she underwent a successful surgery at 2.0 lbs. to repair her PDA which controls blood flow from the heart to the rest of the body. I remember when the surgeon explained that he would have to pick her lung up in order to get to the valve in her heart. My knees went weak. I said, “Where are you going to put it, she’s only 2 pounds!”
We learned so much and I am forever thankful for the support group that was provided at the hospital because I didn’t know anyone personally that experience what I had. The NICU staff and doctors were awesome! They made sure we understood everything that went on with our child while she was there and broke things down in terms we could understand. I realized not to take the small things for granted. During her feeding, she had to learn the “suck, swallow, breathe” sequence. I remember thinking, she won’t get it, when will she get it, she got it.
Dealing with family in friends outside of the NICU was more exhausting than individuals can imagine. It’s hard to update people and explain things when you are just gaining an understanding yourself. I would get excited when she gained a few ounces, only to be deflated by the never-ending question “How much does she have to weigh to come home?” It’s not about weight, it’s about milestones. But then you would have to explain what you meant by milestones. I started a website to update people but then would be too mentally burnt out to update it. I later asked my family to provide updates on major items when people called.
We stayed in the hospital until March 5 which was 10 days before her due date of Mach 15. We have had our ups and down since she came home and we are as sensitive as any other parents that have spent any time in NICU. We are pleased to say we have not been hospitalized since she has been home. We do have regular visits at multiple specialists, but after the doctor’s appointment, we head home!
Even though we went through so much with our Sydney Lucille, I never thought we were going to lose her. I felt like God brought her to us early for a reason. I believe my reason was for my Faith to come full-circle. When I lost my Grandmother, Lucille King Smith, suddenly in February of 2010 my faith came into question. But the same God I questioned was the same God I had to rely on to bring me through. He placed the right people in my life for the right reasons. My family was there the entire time offering help and support and remain there celebrating her life, accomplishments and all her milestones!
Since Sydney has been home, everyday has been a challenge. My largest challenge has been communication. Sydney was non-verbal until almost 5 years old. The hardest part was her being sick and not being able to tell me or her doctors what hurt. Or her starting daycare and not being able to articulate she is hungry. To this day it’s still a challenge to communicate her needs being on the spectrum. It’s rare that anyone takes the time to realize that she has a neurological disease. I sometimes like we’d get more understanding if her disability was visible.
Sydney has received therapies from the time she left the hospital. We started with Early Intervention after leaving the hospital; where we received physical and play therapy in-home. Based on recommendations from Early Intervention we started the process of getting her “evaluated” through Gaston County Schools at the age of 3. Medically she was a walking miracle and my medical doctors were saying she would catch up.
I understood Sydney would need extra therapies when I realized as an educator, something was different. Things that would cause other kids exhaustion, jumping up and down all day, seemed to provide her more energy. I would later find out that was stimming. She was not verbal at the time. After evaluation process from Gaston County Schools we received a diagnosis of Autism Spectrum Disorder and Developmental Delays. They stop “adjusting age” for preemies at 2 years old, but that doesn’t make them any less preemie.
I believe all her therapies are essential to her growth & success. She started receiving Speech Therapy and other therapies through Gaston County Schools at 3 years old & they went to her daycare to provide services. We received occupational therapy at Compleat Kids in Gastonia. Sydney attends TEACCH (UNC autism program) she has received equestrian therapy through Bit of Hope Ranch that has an Autism Specific Program. There I learned from other parent about a Developmental Pediatrician, we visit a pediatric neurologist, pediatric sleep specialist. In her current school Hawks Nest STEAM Academy, she receives speech, occupational therapy and a support person that guides her through her day. We found a wonderful Therapeutic program through the Charlotte Mecklenburg Parks & rec system where we attended summer camp Summer 2019 & just finished her first-round cheering on the Pep Squad for the Carolina Panthers sponsored Therapeutic flag football team. If we know about it, we participate.
I heard about Bee Mighty from a colleague and mentor Jamie Conrad. Jamie has twin boys and although they are not on the Autism Spectrum, they were premature. Her experience, support and encouragement helped me to navigate the “preemie” system of things. I applied because although we work and have insurance, the copays, deductibles, and co-insurance from all her therapies were causing a strain to our household and we needed help to be able to provide her the help she needed. Bee Mighty was instrumental in providing that help. We could not have continued our therapies without their financial assistance. The process was not challenging and they even communicated directly with the providers to provide payment.
A typical day for Sydney is extremely structured with routine. If there are any variations from the routine we attempt prepare her for it by conversation, social story, procedures, etc. We give her responsibilities to ensure she is self-sufficient but all of her tasks are supervised. She’s intelligent and determined. I often tell people “All the fight she had to make it out of NICU is still in her!” She wants to do well and works really hard. She likes what she likes not what you want her to like, she eats the same thing for lunch daily. She’s verbal now and using her words in the right context and she’s our Ausome Sydney.
Advice for parents: In transparency, I have shared our good, because I don’t like to relive our bad situations. We have been alienated from daycares. Boys N Girls Clubs, Summer Camps, YMCA Warlick Swim lessons, a charter school and a number of other places because “she needs more support than we can provide.” It hurts, its unfair and unjustified in many cases. I would tell parents continue to fight for your child, be their voice, ensure they are getting what they need, seek out resources, try everything to see what is a good fit for your child. Appreciate, capture and celebrate EVERY milestone. No one knows your child better than you, trust your medical professionals but also trust your gut instinct. If something doesn’t feel right, say so. It might be uncomfortable in the moment, but it’s more uncomfortable to go through months of therapies that don’t produce results for your child. Hold your kids accountable, don’t take anything for granted, be involved and engaged with their needs and milestones, treat them as neurotypical as reasonable, protect them & don’t apologize for protecting them!