Monday, April 22, 2013

An Adventure with Landon

Day 1

Six days ago, April 16, 2013, Landon James Shrader took his first breath and changed my life forever. Everything else in the world fades to insignificance with the birth of your first child. He changed my definition of love, joy, and exhilaration just by existing. Born at 7:07 pm and weighing 7 pounds and 1 ounce, he was the vision of perfection. Already handsome (obviously from his mother's side), my world has revolved around him from minute 1. I had often imagined all the exciting times we would have together but unfortunately our big adventure started far too soon.

Early in the afternoon of April 17, Landon had his first seizure. By 4 o'clock he had suffered 4 and Mercy Regional was unprepared to deal with such an emergency. Due to severe storms, a transfer by helicopter was impossible and we waited 2 agonizing hours for an ambulance to arrive from Topeka. By 9 o'clock we were in the waiting room of the Stormont-Vail Neonatal Intensive Care Unit (NICU), anxiously awaiting word on his condition. An hour later we were finally allowed to see him and were informed that his seizures were under control through chemical intervention with Phenobarbital. Further tests would wait until morning. Karen and I slept in fitful bursts that night.

Thursday morning had many tests in store for Landon. Before noon he had undergone an MRI, blood draws, skin scrapings, lumbar punctures (5 times), EEGs, aEEGs, and a CT scan. He was placed on ampicillin, gentimicin, acyclovir, furosemide, D10, and was given a naso-gastric tube to allow for feeding. At approximately 4 p.m., only two days after the happiest moment of our lives, we were given heavy news. Landon's brain is only 1/3 the size it should be, its growth restricted by a 6 mm thick layer of fluid around his brain. The damage was permanent but the severity of the lesion was still unknown. It wasn't until 10 pm, when a neonatal neurologist was brought in, did we discover that he would probably have trouble breathing, eating, and regulating his own temperature. Further tests were needed. No sleep again that night. Karen and I had barely eaten in 48 hours as well.

Following a CT scan, Friday night brought the lowest moment of Karen and my lives. Consultation with a neonatologist revealed that Landon is unlikely to reach his first birthday due to complication that often coincide with babies that struggle to eat and maintain their own temperature. Despair can hardly describe our emotions. Our 3 day old, perfect, beautiful, intensively loved son was given a deadline that neither of us thought we could cope with. It felt like the world was crashing down around us.

And yet, for some reason, we kept breathing. Inevitably, another second ticked off the clock. This was real and we were going to have to deal with it. Landon's condition scared and intimidated us (it still does), but if anything it only made us desperate to love him more. We need to fit an entire lifetime of love into such an an abbreviated dash of life and that can only be done by special parents sacrificing for their precious gift. And so we made a conscious decision to 1.) Thank God for this gift of life and beauty that we'd been given and 2.) To cherish every single moment we had with our "Little Goat." With the love, support, and compassion of our friends, families, classmates, coworkers, and community we made it through that night and began our adventure with Landon.

Our goal is to find and celebrate one victory each and every day of Landon's life. Saturday, Landon was able to make it through the day with only 1 seizure and sucked on his pacifier twice. Sunday was a huge day with lots of improvement! He began centering his arms, regulated his own temperature for over 20 hours, lowered his dose of Phenobarbital, and was able to wear pajamas for the first time. Monday showed great improvement as well. With a lower level of phenobarb in his system, Landon was breathing smoothly, regulating his own temperature, and finally off his antibiotics. The nurses took one of his IV lines out and Landon was able to suck on the back of his hand.

When you have a blessing like Landon in your life, smiles and happiness come easily. We are determined to stay positive and make his time with us as exciting and filled with love as we can. With our amazing support system (and a bit of stubbornness), we are confident we can take a difficult situation and turn our time with Landon into a celebration of his life. We're excited to have you join us on our adventure with Landon.


15 comments:

  1. Your son is so blessed to have such fantastic and loving parents. You never know, he might beat the odds. I will keep him in my thoughts and prayers. Can't wait to see what other strides he will make. Keep up the faith!

    ReplyDelete
  2. your strength and bravery is inspiring....truly
    i look forward to reading more updates about Landon

    ReplyDelete
  3. Praying for you both and your beautiful little boy. Will keep you on our minds in the coming days!

    ReplyDelete
  4. Lovely post Trent. Landon is a blessing and in turn is blessed to have such wonderful and caring parents. I can tell already that he is a fighter and will give you plenty of victorys to celebrate each and every day. Prayers for you all!

    ReplyDelete
  5. OK, So I already love you little man Landon. Can't wait to meet you! You have been sent for a very special purpose. You have much to teach us all!

    ReplyDelete
  6. Your friend, Leslie Engelman, shared Landon's story with me...I will be praying for you and your wife, and your amazing little boy. May you sense God's immense love for you as you walk through the days ahead, celebrating each and every part of Landon's life!

    Tracy Emery

    ReplyDelete
  7. Karen and Trent, You have an amazingly beautiful baby boy in Landon! I have been getting updates from Denise on Facebook (we used to work together, and I am retired pediatric & neonatal ICU nurse) and I am so excited to hear all the wonderful progress Landon has made in this short first week of life. I believe that children born with challenges have some of the most amazing parents, and that God blesses them for a reason. I really look forward to following Landon's Amazing Adventure--my gut tells me it is going to be a great one, filled with love and happiness for you all!

    ReplyDelete
  8. What an inspiration you three are. God gives us our children and sometimes we have to give them back for awhile. in the end we will finally see the big picture. enjoy with lots of hugs n kisses.

    ReplyDelete
  9. Trent and Karen,
    Your loving tribut is a testimony of your strength. Everyday will be cherished and treasured with your precious gift. Remember the Lord our God has big shoulders and will lovingly accept whatever you take to him, he will listen. Stay strong for each other. Your family is in our prayers.

    ReplyDelete
  10. He is a doll. Sorry to hear all this. Mirecles do happen, nd is one. He made it off yhe antibiotics, thats a start. I have faith in your little bundle of joy god gave him the perfect two. Keep your head up. Ill keep u all in mu prayers.

    ReplyDelete
  11. As the mother of a child who wasn't supposed to live to 1 yr. old whose now 10 (of course now they say she won't live to 20, we'll see), I feel your pain of not knowing. I like things in black and white, my daughter has definitely challenged me to live in the gray. Often say that even my worst days are blessed days because my daughter is here. And I'll be blessed forever for having known and loved her even after she leaves. Every day is a gift well beyond what was promised. Take care of yourselves. Don't feel guilty if you need to take a break. This a marathon, the better you take care of yourselves the more you can be there for your beautiful boy.

    ReplyDelete
  12. Your friends from vet school, Amy Jones and Mark Brunson, have shared your story with us so that we can be praying. He is a sweet and precious baby boy! Please know we will hold you guys up in prayer as you celebrate each moment of his life.

    ReplyDelete
  13. I am Aidan Wolfe's mom. She came into the world 9 weeks early, weighing 1 lb. 14.2 oz. The doctors aren't sure why... somehow she thrived and is now one of your veterinary school classmates. Miracles do happen. Landon is a beautiful and I thank you for sharing your blessing. Prayers and joy to you all.
    -sandy lowe

    ReplyDelete
  14. I heard about you through a friend at work and just wanted to take the time to read your blog and tell you that I wish you much strength and love during this time of struggles. I wanted to share a blog with you that I came across that might help you not feel so alone. Its called Little Seal Ronan's Blog www.ourlittleseal.wordpress.com. They also were blessed with a beautiful baby who would only be in their lives for a short time also. Maybe you can get strength from their journey too.

    ReplyDelete
  15. Praying for you with love and hope.

    ReplyDelete