Thursday, May 2, 2013

Learning the Ropes

Day 11

It's always easier to make plans than to keep them. As expected, Karen and I had a fantastic night with Landon. His monitors never went off, he slept very well, and he maintained his temperature like a champ. Unexpectedly, Karen and I struggled to sleep much of the night. The mixture of excitement and anxiety we felt made us jump at every sound he made. Eventually fatigue did take effect after his 3 am feeding. I took the 6 and 9 am feedings while Karen slept and she took the noon feeding for me. On the whole this seems like a good system that we will probably keep up until some schedule changes require an adjustment.

Much of the two hours we salvaged from commute time was spent running errands for items we hadn't even realized we needed. Because Landon doesn't suckle, his lips get particularly dry and cracked. This is understandably uncomfortable and leads to a very fussy baby. The lip moisturizer we needed is specifically designed for babies by Aquafor and required a bit of looking around before we finally found it at Target. With visitors coming to see Landon frequently, we also needed an industrial size bottle of hand sanitizer to help prevent him from picking up germs. His umbilical cord needed alcohol wipes and we had to find an extra-wide crib to accommodate his Tucker Sling, an inclined wedge and body harness specially designed for babies who need to be elevated for various reasons. Being inclined helps Landon maintain his airway and may help him digest his food.

Besides assembling the crib and doing the endless syringe cleaning, milk warming, diaper changing and cataloging, I was able to catch up on some studying and Karen napped to prepare for tonight's feedings and changings. As far as Landon goes, he seems the happiest and healthiest that I've seen him. His breathing is easy and even, his bowl movements are regular (and getting bigger with every diaper it seems), and we haven't seen any seizure activity since Saturday. It's great to see how well he is doing, particularly with all the traveling we will be doing soon. Karen and I were a bit concerned about his ability to handle riding in a carseat for the amount of time he will have to but his apparent stability is reassuring.

Landon's schedule in the near future is beyond busy. We are still awaiting test results for genetics and blood metals, both of which should arrive in the next week or so. We have an appointment with a geneticist Monday, audiologist Wednesday, pediatricians later in the week and pediatric neurologists the week after. We will bounce around between Topeka, Manhattan, Lincoln, Omaha, and eventually I'm sure we will see specialists in cities around the country. Landon's cranial ultrasound yesterday showed, in my uneducated opinion, a slight improvement in the amount of fluid in his subdural space and in the ventricles of his brain. It will be interesting to hear the interpretation by our neurologist when he has had the opportunity to fully review the film.Ultimately, our treatment plan for now is to provide supportive care until we can hammer down a more definite etiology (initial cause of the disease).

Our good friend Cameron has been an immense blessing in our lives. He has been anxious to help us in any way he can and has learned how to slow-push Landon's feedings so that if Karen or I ever had another task to work on, Landon would still be fed on time and correctly. Even though our families have returned to Nebraska, I know we both feel as though we're surrounded by loved ones every day. I'm sure as fatigue begins to take a greater toll on our bodies we will appreciate a few watchful eyes to supervise Little Goat while we nap or shower, etc. As we begin to further understand his condition, having good friends around to help us make changes in his environment and treatment plan is a huge reassurance.

Despite his condition, when we are home it is easy to think that Landon's prognosis is wrong. Outside the hospital we are relieved of the feeling of waiting for the ball to drop. It no longer feels like an emergency is waiting around the corner but more like we are making slow progress up this mountain of a challenge. I know that it is important to stay realistic but optimism abounds in our house now. The rarity of his condition aside, Goat has proven that he is unique in other ways. His spirit and will to thrive are evident and are a ceaseless well of heartwarming moments.

As you will learn if you continue to read what I write, Gandhi is one of my favorite people in the history of time. His love for people and his wisdom inspire me. Gandhi believed that no matter where you start in this world or what people expect of you, you can always be a catalyst of goodness. He famously said, "First they will ignore you, then they will laugh at you, then they will fight you, then you will win." He was referring to the British occupation of India at the time but his determination and fortitude are characteristics I strive to apply in my daily life. Landon's great progress and strong spirit, even at his young age, have shown me that even the littlest of bodies can have the most powerful of souls. I pray we all embrace the lessons we can learn from a child and be in the world as they are: unprejudiced, with open hearts and arms, full of love.

"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi


  1. So thankful that Landon is doing well at home, and that you both are doing such a great job of taking shifts and helping one another. Please know that our small group {which has Amy Jones in it} continues to pray for you all, and would love to help in any way we can, even if it's errands to find things like Aquafor ;).

  2. Just now finding the time to read this entry and I am so glad I did. I have been praying not only for Landon, but for your's and Karen's strength as well. I can see that you guys will all make it through just fine. However, I won't stop praying. I wish there was someway I could help, but the most I can do is pray.