Primary Children’s is the great equalizer. It is a place where perspective is not only gained…it is forced into the minds of those who happen to find that their trials and challenges have led them there. It is very easy at times to feel sorry for one’s self. It is very easy to look around you and be jealous of those who find themselves on perceptually greener grass. Not at Primary’s. This place will humble even the most scarred hearts and minds. Just when you think your situation is beyond your ability to endure, you look to your right or to your left…and you see other parents just as in love with their children as you are…looking as beat down and broken as you feel. You learn very quickly that you MUST, when taking inventory of your life, count the “haves” and never the “have nots”. You realize that, though your challenges are not small and the road ahead is riddled with trials, there is always someone else traveling a far more difficult path…one that may not end with them taking their child home to enjoy a productive and joyful life. Their path may start and end in that hospital…and these parents are heroes for being willing to walk with and even carry their little ones every step of the way…even if it’s only a few terribly short steps.
We are so blessed. Our little Lily is home. She is doing very well. Will she ever walk? We hope so but are prepared to walk for her if needs be. It’s amazing how long you wait to see a face you’ve been imagining forever...wondering what she looks like. Then, when you see her for the first time…you realize…it was ALWAYS her…a baby girl with a face you always knew. Of course it’s you Lily…it was always you. We aren’t seeing her or feeling her for the first time…we’ve been here before…and it’s more a wonderful reunion than a first time introduction. She is and always was going to be ours.
I have to admit…there is nothing special or unique about me as a father…at least not yet. But I am working on becoming worthy of this little gift. The line between her belonging to me…and me belonging to her is extremely cloudy…as it is with each of my kids. They teach me more than I could ever hope to teach them…this fact forever changing my perspective about God’s plan for families. We do not save our kids…our kids save us. Though I always knew the type of woman my wife is…I am in awe of McKenzie every day…at how absolutely perfect she is as a wife and mother. In my opinion, every other kid alive should be jealous of my children…who will live their lives under the wings of such an incredible woman. I will forever try to deserve being her husband. What an honor to walk this life beside her. God is very clear about how important His sweet daughters are to Him…and my wife helps me understand why our Father in Heaven is so protective of her. She exemplifies charity, love, and kindness…attributes God’s mortal sons sometimes fail to embrace…but should always strive to emulate through the examples of these strong and powerful women who adopt their true nature and become examples of goodness and light.
We are fighting the fight. Together, we are doing for her what every parent would do for their child. We will love her and cherish her and provide her every opportunity possible. She, like Wyatt and Skylar, is a piece of our lives. We are not and would never be complete as a family without her.
To catch you up.
We only had Lily home for a few days after she was born before we were back in for emergency surgery. We were desperately hoping that Lily would be one of the few kids with SB who wouldn’t require a shunt to address issues with hydrocephalus (fluid on the brain). Sadly, we weren’t that lucky. Shortly after coming home, we began to notice that here head was swelling and her fontanels were feeling increasingly full. The surgery was scheduled to take place at Primary Children’s Hospital early the following morning. Needless to say…it was a sleepless night for both Kenz and myself.
We arrived at Primary’s and were immediately taken to CT. Our Neurosurgeon was hopeful that Lily’s anatomy would allow for the performance of a relatively new but effective procedure known as an Endoscopic Third Ventriculostomy or ETV. In simple terms, this procedure would allow a hole to be opened up inside the brain, which would provide an alternative route through which cerebral spinal fluid could flow effectively. The advantages are clear…no foreign object in the body…decreased chances for infection…no “equipment” in the brain that could fail…fewer incisions…lower long term complication rate when compared to a shunt. It seemed like a great option for Lily…and we were optimistic about the chances of qualifying. However, it was not to be. Sadly, the potential risks outweighed the possible benefits due to the fact that little Lily’s anatomy would not accommodate the tools needed to perform the surgery. It was just too risky…and the doctor felt that attempting an ETV could seriously harm or even take Lily’s life due to the close proximity of the incision area to major parts and vessels of the brain. In a nutshell…there wasn’t enough room to work without risking her life. The correct and ONLY reasonable decision was made…and a shunt was placed in Lily’s head, which would allow the CSF to drain from her head into her peritoneal cavity where it could be reabsorbed. It was a VERY hard day. Handing her to the nurse just before surgery was like giving a fragile piece of our hearts to a stranger with a smile. There was no way she knew who she held in her arms or what she meant to us. We made them promise to be gentle with her…and to do for her as they would their own children were they charged with their care. It was an incredibly emotional time. I felt so blessed in that moment for a few very obvious things. First, my sweet wife…who could not be with me for Lily’s first surgery because of her own challenging recovery. Being together for this second surgery made a difficult situation…not only bearable…but a blessing as we felt the binding forces of adversity pull us even closer together and further solidify our union. Second, the AMAZING doctors, PA’s, NP’s, nurses, and techs who took care of our little angel. Without them, our baby’s challenged and broken little body would have been uninhabitable for her soul…and we would have lost her multiple times over. Third, the incredible facility that is Primary Children’s…where parents like us can retreat to when we feel overrun and on the verge of defeat brought on by the complications our children face.
I have to take this time to also thank dear friends. I had to take time off work so that I could be with Lily at the hospital. Some of my dearest buddies, Derek and Norm, took my place at work and ensured our duties as paramedics to care for our clients were fulfilled in every way. As if that wasn’t enough…while Kenz and I were waiting in the cafeteria for Lily to get out of surgery, I suddenly felt a hand on my shoulder. I looked up…and there was my dear friend and co-worker Thomas standing above me. I broke down and hugged him. I couldn’t even talk. He didn’t tell me he was coming, he didn’t even know if he could find us…but he came anyway. It touched our hearts more than he could ever know and I am eternally grateful for friends like Thomas, Derek, and Norm. It could have been any number of people that day…as so many have helped us and supported us when we needed them most. I apologize I can’t name them all in this post…but as updates continue…I will do my best to give credit where it is so fully due. Thomas, Derek, and Norm represented all of our friends in that moment. Thomas could only stay for a few minutes…but those few minutes influenced us so much that day…and changed the mood for the better. God bless all my friends who have supported us in any way. We feel your collective strength...and the load had been made lighter…and at times…hardly a noticeable burden at all. Thank you for carrying us Thomas, Derek, Norm…and the rest of you.
Lily came out of surgery with her new shunt in place, and in every respect…it was a great success. Our prayers that the medical providers attending to her would be blessed to perform their duties beyond their normal capacity and potential were answered. Lily was left to recover with mom and dad by her side all along the way. Kenz only had to endure one uncomfortable and sleepless night lying on a “chair-bed” next to Lily while I had the luxury of sleeping at home with our other two kids. To our surprise and much to the surprise of the medical staff, Lily was released to our care and came home after only one night in the hospital. It was wonderful. Since the surgery, Lily’s shunt has held up strong and hydrocephalus has not been an issue. The scars on her head, behind her ear, and to the right of her naval have healed magnificently well. Infection associated with the shunt itself and the incision sites is always a concern, but it becomes less and less likely as time goes on. To date, there have been absolutely no problems or complications associated with the shunt placement. Time will tell if we can continue to brag of its success. We hope she enjoys a long and healthy life where her shunt remains in its proper place…as a cool conversation piece when showing off for friends.