Better for Knowing Her

by Adriane of Our Story.


Greetings! My name is Adriane, and I am married to a wonderful guy, Nathan, who serves our country as a pilot in the Marine Corps. We have been married 8 years and lived in 5 different states during that time; we're currently calling the tar-heel state of North Carolina our home-sweet-home.

I was 26 years old when we found out that a second child would come into our family. Our first was 5 months old at that time; a pretty little baby named Sade. We were very excited at the prospect of having two little girls causing chaos and stealing hearts together. Our first daughter had been a very uncomplicated, run-of-the-mill pregnancy and delivery. I had lost a child from a previous marriage, so we felt very blessed to have her. We also foolishly thought that since I had previously undergone that painful loss, we were "in the clear", heartache-wise. I paid my life-lesson dues, right? No more sessions needed.

Although we had no reason to suspect a problem with this second pregnancy, I found myself feeling more anxious about this child's well-being. Just an under-the-surface uneasiness, so subconscious that although my husband felt the same thing, we never even brought it up. But I had a handful of sonograms done just to "make sure" that she was fine. And aside from my little peanut girl being in breech position, everything was.

Near the end of my pregnancy, we decided to have a procedure done to turn our baby - newly named Kylee - into the correct position. I was hesitant about it, but after repeated reassurances by my OB and with the thought of a dreaded c-section looming in my mind, we agreed to the plan. The version was done so quickly and seemingly-effortlessly that I laughed at myself for being so foolishly nervous.

I went into labor at 3 am on February 25, 2006. Nathan and I relaxed as the epidural took effect, chatting and dozing while we waited. We believed the labor was progressing like clockwork. Finally it was time; I cheerfully started pushing Kylee, eager to see her beautiful face for the first time. Looking back I realize that those were the last moments of what we refer to as our "former life"; a peaceful, carefree stroll through sunshine-filled days and sleep-filled nights. In an instant, everything changed. There was my OB, placing and internal monitor, pushing my bed out into the hall and shouting at nurses to prepare the OR. There were the nurses, scrambling to prep trays and equipment. There was the anesthesiologist, pushing meds and placing an oxygen mask. And there was the most horrible sensation of being ripped in half. Finally, there was Nathan, mirroring my look of shock and confusion.

"Come here, little girl" the OB said, and I expected to see a squirmy pink baby placed on the infant warmer to my right. Instead, I saw a tiny, lifeless, blue body. No, this can't be right. I watched as the pediatrician resuscitated Kylee, intubating her, and whisking her away to the NICU.



An hour or more later, when my involuntary, pain-induced tremors had stopped and I realized that indeed I would live, I visited my Kylee. My "NICU baby". As a nurse, the sight of monitors, IV's, tubes, etc was old hat. As a mother, I had also seen this before, and it wasn't a memory I had intended to relive. "She'll be fine" I told myself, although she also was racked with tremors - seizures, per the nurses.

Kylee was flown to another NICU, and stayed there for nearly 8 weeks. There we learned of the pervasive hypoxic-induced brain injury, labeled "moderately severe". More diagnoses followed shortly thereafter: hypoxic-ischemic encephalopathy, laryngomalacia, GERD, seizure disorder, dysphagia, cortical vision impairment... Still, we didn't understand the enormity of our situation. Denial, I guess. Kylee never demonstrated a suck or swallow reflex, and so had a g-tube placed along with a nissen fundoplication to stop the refluxing formula cascade from her nose and mouth. The official cause of her traumatic birth was ruled to be cord compression, although no visible evidence (knots, nuchal looping) was apparent.

We spent five days at home - five sleepless days setting up equipment (feeding pump, suction equipment, apnea monitor), meds, schedules, and moving her "room" to the living room, because there was no way she could share her older sister's bedroom now. We watched as her pale skin grew paler, and as her labored breathing grew shallower. Finally we rushed her back to the hospital to note an oxygen saturation rate of 50%, where she stopped breathing altogether and was again resuscitated by the same pediatrician that saved her life on d-day. She spent another month in yet another hospital, and was eventually released with home oxygen, an oxygen saturation monitor to replace the apnea one, and in-home nursing at night.



We were given hopeless prognoses and told to enjoy our life with our baby as long as we could. But what followed was not death, it was a new life. A life of doctors' visits, therapy schedules, and hospital stays - 20, to date - and of more diagnoses; chronic pneumonia, infantile spasms, hip dysplasia, osteopenia, reactive airway disease. A life of learning about cerebral palsy - Kylee's "umbrella" diagnosis, about what kind of child she would be, and about the new world we had joined. Many had joined it before, and it helped to know that although this place was less populated, there were still friends there.

After Kylee's birth, we felt like we had literally fallen into a black hole; the deepest abyss on Earth. I prayed but felt nothing but sadness and despair, and I wondered why Heavenly Father had left us.

On one occasion, I found myself sitting alone in my car. I had just kissed Kylee goodbye in the large Children's hospital where she was staying, and prepared to pick up Sade from her Grandma's house. Nathan was in our hometown as he had to return to work and school. I realized as I sat there, that each of us had been separated by this event, and that the attempts to be with my two girls in their two separate places was killing me. This wasn't how families were supposed to be. I admittedly cried - that kind of heart-broken, unrestrained cry that comes from weeks of suffering.

No sooner had my emotions overcome me than I instantly felt at peace. I felt like some unseen force had practically touched me and taken away my sadness, bringing me instant comfort and drying my tears. I realized that this was Heavenly Father's comfort, and that He was indeed with us. He hadn't left; I just hadn't been able to see Him from where I was standing. Slowly our understanding grew, as well as our ability to acclimate to our new life. We realized that our daughter was injured very severely - unable to reach out even one arm, unable to play with a toy, unable to hold up her own head. I admit that ever milestone she missed, every evaluation that ranked her as a "newborn" despite her progressing age, was very hard to note. But I also started to see Kylee for who she really was - not a medical creature to be diagnosed and tested and treated, but a perfect, innocent, angelic spirit. My frequent prayers that she be able to communicate were answered, as Kylee can express herself in her own ways - smiling, crying, making some verbal sounds, and providing minute changes in facial expression or posture that let us glimpse into her thoughts.

Kylee loves being held. She loves being snuggled and kissed. She adores watching other kids - most especially her older sister, who enjoys a very typical affectionate/jealous relationship with her younger sibling.



Kylee demands attention and entertainment; boring as easily as any other four year old. Swimming, swinging in the hammock, going to special-ed preschool, listening to favorite songs, getting tickled, bath time, and bedtime massages are favored activities. Yes, she is a lot of work. But we realize that "where much is given, much is required" - and that in order to be blessed with such a beautiful, beloved child we have to put in a little more effort for the privilege.



Life is "normal" for us now. I really don't even remember what life in that former world was like. I know I wouldn't trade Kylee for it; I wouldn't trade her for anything in existence. I think of what happened in comparison to riding on a train. We had been quietly riding along on our passenger train of life, taking in the scenery, when BAM! The whole darn thing derailed. That train received some significant damage, and the repairs took some time. But month by month, and year by year, it again started to head for the previous destination. And pretty soon, the people on board were chatting and carrying on nearly as before, practically as if they had forgotten the mishap. Except for the fact that they were all wearing bandages. And that this time, we refused to ride. We drove.

I will never know if I could have prevented her injury by having a scheduled c-section instead of a version. I will never know if her cord was pinched by her shoulder, squeezed by her fist, or pinned somewhere else by her body. I will never know if turning Kylee moved that cord into a compromising position or set up the chain of future events that unfolded. I will never know if having a different medical course early on - infant cooling, cord blood reinfusion, or earlier at-
home oxygen - would have caused a more favorable outcome in her abilities today. But I do know without one shred of doubt, that Kylee is living the life that was intended for her, that I love her more than could be imagined, that we are blessed to have her, and that she is making each of us, individually, a better person for knowing her.