Go, Kenzie! GO!

Go, Kenzie! Go!

Today we are celebrating so much more than the first birthday of our daughter, Kensington - we are celebrating The Lord’s providence, grace, and provision in the lives of our little family. While her chubby cheeks and squint-eyed grin depict sweet little girl, she is a fighter who has already seen tremendous highs and lows.

Some of you will know Kenzie’s story, but, for those of you who don’t, we have felt the Lord’s tug for some time now  to share it with you - for no other reason than to boast in Him. Sharing these personal circumstance is not easy, but our hope is that encourages those who have or will face similar circumstances.

A year ago today (on the ultimate Pi Day: 3.14.15), Kenzie made her grand entrance as The Gills and The Lukerts welcomed her into our family. She was a joy and a wonder to her Mommy and Daddy. Her first few hours went by smoothly and all we could do was stare in awe of the precious gift the Lord had given us.

When we got settled in our new room in postpartum, we wanted nothing more than to love on our baby and make sure she ate and slept well. Being new at this whole parenting thing, we were both rightfully nervous and alert.

When it was time for her next feeding, we were forced to stop abruptly a few minutes in. Kenzie seemed to get a little choked and, after a second or two, her face started to turn blue. I called out to Kelly in a panic and firmly patted her back to clear her lungs. Fear set in immediately as he first ran into the hallway and, seeing no-one, sprinted back into the room and fumbled to call the nursery. Shortly thereafter, she recovered and the nurse on call came in to examine her.

After some difficulty regulating her body temperature and a blood test determining her white band count was high, she was admitted to the NICU with an unknown infection. Protocol deemed that she stay a minimum of 7 days and be administered drip antibiotics for the duration of her stay. As you might imagine, as soon as they wheeled her bassinet out of our room, we broke down in tears, fearful of her state and insecure in our ability to care for her well.

That week in the NICU might have been the toughest week of her first year. Neither one of us will forget the first time we saw her under the warmer with IVs running from her hands and an NG tube running down her nose. She nursed every three hours: 9:00, 12:00, 3:00, 6:00… around the clock. Thankfully, we lived only 5 minutes from the hospital. After scrubbing in, feeding Kenzie, doing skin-to-skin, and getting home, we were usually left with about 30 minutes to rest before we had to turn around and head to the hospital to do it all again. After 3 days of doing this, the NICU nurses (who were incredible), insisted we pick a feeding to drop and let them bottle feed our girl instead. We dropped the 3:00 am feeding so that we could get some shut-eye. For those of you who have seen the NICU days, you know how exhausting they can be. This week seemed to last a month.

Finally, we’d come to Kenzie’s last day on the antibiotics and in the NICU. We were excited and relieved to get our girl home, at last. Our families were planning to be at our house to welcome Kenzie to her new home and love on our sweet baby. As we got to the hospital to nurse her one last time before we brought her home, we got some unexpected and dismaying news. During a standard round, the Neonatal Nurse Practitioner happened to hear a heart murmur in her examination of Kenzie. They wanted to perform an echocardiogram to see what exactly was causing the murmur, but tried to reassure us not to worry. They found two small muscular VSDs (holes in her heart) and referred us to a Pediatric Cardiologist for further evaluation. The initial report was that they were small enough that they looked as though they should heal themselves as the musculature of her heart developed. The wind was taken out of our sails and our excitement to bring our daughter home was quickly being replaced by anxiety and fear.

With this new information, we got word that the Neonatologist wanted to have a private meeting with us. We assumed the meeting centered around Kenzie’s newly discovered heart condition, but weren’t really sure what to expect. As soon as she started speaking, we both knew we were about to be given some grave news. She believed that a few small abnormalities in our pregnancy, the infection, and the congenital heart defect could possibly have a singular underlying cause: a syndrome of some sort, possibly Down’s. As the words left her mouth, we felt like we were in a movie or like we were in some sort of slow-motion dream. Our hearts absolutely plummeted and our stomachs turned. To hear that something that substantial might be affecting our child was incomprehensible. With clenched fists, lumps  in our throats, and a hurricane of thoughts and emotions, we managed to keep it together by the grace of God. We were still able to take Kenzie home, but were like zombies as our family passed our sleeping baby around and admired her. We couldn’t bring ourselves to tell them then what we’d learned just moments before.

After a full karyotype, the doctors determined that Kensington did not have Down’s Syndrome - but they found a deletion, or portion of missing genetic material, on the P-arm of her 4th chromosome. We had no idea what that entailed, and neither did they, really. This type of deletion isn’t common enough to be classified into any syndrome, which means there isn’t much information on outcomes of similar cases. After meeting with the Geneticist at Children’s, we came to understand that Kenzie could potentially face cognitive and developmental delays, but that only time would tell if that would be the case and to what extent.

If we think about it long enough, the unknown surrounding her condition can be too much to bear. But we choose to view it as a clear opportunity to watch and expect The Lord to work miraculously. Had she been deemed to have a syndrome, there would immediately have been some adjusted set of expectations for her life based on children with similar genetic conditions. If this were the case and she were a painting, she likely would’ve been viewed as a paint-by-number. However, in His Grace, he’s provided us with a blank canvas upon which we can observe the creativity and blessing He has provided in our daughter. We have no other option than to wait on and hope in The Lord and watch as, day-by-day and month-by-month, he crafts the masterpiece that is Kensington Page. As we’ve waited, hoped, and prayed over the last 12 months, we’ve already been filled with such gratitude and thanksgiving at Kenzie’s development - both cognitively and physically. We’ve learned that comparison is the thief of joy and to always find encouragement in her progress. While, no doubt, Kensington will have to continue to work harder (ask her Physical Therapist) than most to crawl, stand, and, eventually walk, her mommy and daddy will never tire in cheering, “Go, Kenzie! Go!”