What a beautiful and inspiring story. Thank you so much Tharen, for sharing this with us. You’ve touched our hearts!
Skylar’s Preemie Journey
It wasn’t supposed to be like this. I had envisioned that one day, my husband and I would welcome a newborn baby together in the hospital, surrounded with friends and family. We would have a cute little nursery set up for her, with a rocking chair to help her get to sleep. I would be HUGE, even after giving birth, and that it would take no time at all for my former gymnast body to get right back into shape.
It wasn’t meant to be.
After accepting that I would be a single mom, I had even more to grapple with. Three days after deciding on her name with her father, I was swollen. My face was noticeably larger, and I couldn’t feel my ankles. I thought it was my pregnancy finally catching up with me, since I was six and half months along. My friend Erin, who I have known since my freshman year of high school, came into work and said I needed to go check my blood pressure. I walked to Giant, and wrote down on a piece of paper what my numbers were, looked at the guide, and saw I was in the range of hypertensive, whatever that meant.
From there, I drove myself to my parents, and in the meantime, I patted my belly, asking my little daughter if she was okay. I got a couple of kicks back, and the worry subsided a bit. While being checked out in the ER, my water broke (thank goodness my mom was with me, or I would not have known what the heck that was.) and I was bleeding. Within the hour, my doctor said “We need to do a C-Section,” and I lost it. I was wheeled into surgery, not knowing what was going on. Another doctor came in, and said there was a 40% chance my little one wouldn’t survive the birth. All I could say was, “Knock me out. There’s nothing I can do about it now.”
My little one DID make it. Skylar Elizabeth was born September 1, 2010 at 11:01 PM, weighing 1 pound, 15 ounces and measured 13.5 inches. I first met her in a transportable isolette, as she was being airlifted to Children’s National Medical Center. I don’t remember the transport team member’s name, but she was somehow able to make me laugh. I knew Skylar was in good hands. 
My blood pressure remained high for days, leaving me at Reston Hospital for three nights. I was very lucky to have a friend, Katie, who happened to be a labor and delivery nurse at Reston, as my nurse the day after Skylar’s birth. She helped keep me sane that day, and gave me hope.
I was finally released and driven to Children’s to see Skylar. She was on an oscillator, and wires running all over her body. 
Skylar was born at 26 weeks and 6 days, gestationally speaking. Even for her age, she was small. Her eyes were still fused shut, and she had not eyelashes. She was jaundice, and she had those funky blue lights on her that look like she was in a Star Wars movie. I couldn’t hold her, and I could barely touch her. Her skin seemed like it was almost wet, and it was translucent.
Holding her for her first kangaroo care, Nurse (and now good friend) Casey asked if I finally felt like a mom, after everything that had happened. I was stunned for a second, because I didn’t know how to answer that question. I didn’t know anything about the baby that lay before me. She hadn’t opened her eyes, or reacted to my voice, or seen me smile. I was barely able to touch her, yet she was mine? In the years after, I realized I had emotionally distanced myself from my daughter. She was on the edge, all the time, one step away from leaving this life. How could I open my heart to her, if I could get a phone call in the middle of the night saying she had passed away? I mumbled something to Nurse Casey, that “Yeah, I feel like a mom,” but I didn’t. Holding her that first time though, helped. 
The months that followed were hard. Sky developed an hole in her intestine that didn’t require surgery, but a strawlike tube that went in one side of her stomach and out the other. It cleared within days. She had two hernias that did require surgery. The night following her surgery, she relapsed, and needed to be intubated. I thought I was going to lose her, within the week that she would end up coming home.
It was about that time that I did feel like a mom, just not any moms that I knew. I was a mom who could sit for hours in a hospital room, pumping breast milk, sleeping with constant beeping in her ears. I could pick up a one and a half pound baby, attached to wires, and put her on my chest. I could drive in Washington DC, one of my most feared places to drive, without directions. I could keep up on doctor rounds, knowing the jargon they used, and what medical terms meant.
There was a day when I was home, where I was just sitting there crying. I saw myself in the mirror, and I looked bloody awful. So I wiped the tears away, and said to myself, “You have a choice. You can be sad for all the things that have happened, for what’s not fair, and for the fear of what you can lose. Or, you can smile.” I chose to smile. I had and still have every reason in the world to pity myself, and what Skylar has been through, but that’s no fun. I’m not saying every day is the best day ever, but overall, it’s great.
Skylar came home on Black Friday of 2010, 86 days after her birth. She came home unaided, no oxygen or monitors. She had numerous follow up appointments, but that was just to monitor all that had happened to her, and to prevent anything from derailing out of control.
One of her follow up appointments included a hearing test. Skylar, like so many other preemies, had failed her hearing test. I was unable to make the appointment. It was Show Week at my work, a week to showcase all the awesome skills my little gymnasts had learned. When I called my mom to see how it had gone, my mom paused. My mom doesn’t pause unless she is trying hard to no insult me. She said that the audiologist would be calling me. No matter what I said, she wouldn’t tell me anything.
The audiologist informed me that Skylar was deaf. After all she had fought to endure in the NICU, she did have a life altering effect from the battle. I was stunned. When you come home from the hospital, it’s supposed to be done. I was unhappy that day, I will admit it. Thank goodness for the amazing people I saw that day, the parents of the children I teach, my mom, my dad, Sky’s adoptive Aunt Jackie, and my boss, Chad. His reaction that day and the words he spoke, have remained ingrained in my head and heart. And it was the first time I felt tough, and that other people meant the words they spoke in how much they admired me for keeping it all together. 
Skylar grew into a very happy baby. She wasn’t a real fan of the hearing aids, which in time would become cochlear implants anyways. She hit milestones. She started smiling, laughing, eating foods. She was sleeping through the night within a month of coming home. Her teeth started to pop through. Her first birthday came and went. She started to babble after her cochlear activation. She started saying “Elm” for her favorite Elmo character. She started signing. She started to run. She started to hug, and now can kiss (sometimes) on demand.
When you have a preemie, your whole life goes on hold. You don’t make plans for the future, because you don’t know if there is going to be a future to plan for. You make deals with God. You grieve, you pity, you are jealous.
When you have a little one in the NICU, there is one goal, one purpose to it all – to get them home. But when the storm passes, when the battle is won, you have to be prepared for the small sneak attacks. The lingering things that become question marks. ADHD, or just from being a preemie? ROP or just bad eyes? In the end, it was the hearing loss that snuck up on us, and changed our lives forever.
A lot of people say, “I don’t know how you do it.” My determination through everything, the surgeries, the long hours driving to DC, the late night when she doesn’t want to go to sleep, the speech therapies, taping of the cochlear processors onto Sky’s head, comes from my friend Karen. Karen’s little preemie, Simon went to heaven mere days before Skylar was born. Karen was one of the first people to post on my Facebook statuses, to message me about keeping hope. For everything that I have been through, Skylar is here. The day that I found out Skylar was deaf, Karen was one of the first people I thought of, and it took all the pain away from me. I could do this.
Yes, it’s hard sometimes. Sometimes I want to give the pregnant mom complaining about how big she is a great big lesson on why she should keep her mouth shut. To tell the parents that are in the NICU together how lucky they are to have someone to cry on, and hold at night, and to know each other well enough to be at your worst with. To tell the stay at home moms how lucky they are that they don’t have to work to keep their child on health insurance. To tell all the people who give me dirty looks when I use coupons, “My daughter is literally worth a million dollars, that’s why I coupon.” Instead, I just keep a smile on my face, and try and help those around me as best I can. 
Years before Skylar was born, I had gotten a tattoo that would turn out almost prophetic. I am an avid quote collector, and this one seemed to resonate with me, since I am petite. But it was a smaller girl that would make it ring true,
“Even the smallest person can change the course of the future.”
~ Lord of the Rings, The Fellowship of the Ring 
~Tharen
