After the most grueling week of our lives, Karen and I took time this morning to sleep in, eat lunch with my mother, and visited a local flower market to shop. Most importantly, we embraced normalcy for a bit and stepped away from the constant worry and fear that sits in your chest every moment we're in the hospital. We didn't try to forget about Landon (we picked out a flowering ornamental pear tree and planted it in the backyard for him), but we tried to have a day more like what "normal" moms and dads know. While my body certainly appreciated the break, I was surprised by the growing amount of guilt I felt as the day went on. I can't speak for Karen but I definitely felt negligent for taking time for myself when my son was an hour away in intensive care. I suppose that's a normal for any parent with a sick child but it makes physical and emotion recuperation difficult.
We got back to the hospital at 6 o'clock tonight and the sight of Landon in his monitors was both a relief and huge stressor. Trying to understand Landon's condition and our circumstances has been a lesson in mixed emotions. I guess part of the challenge is living in the moment but still being unsatisfied, hoping and praying for improvement. I still don't understand how those mindsets can coexist but it's something I'm working on. Success would be a small step in the right direction of the overall goal: letting this experience change us for the better.
Landon's resilience and progress has made this process manageable for all of us. Today was another example of how even tiny achievements can really raise our spirits and make the fight worth fighting. An eye exam this morning revealed that Landon has vision and the ability to track moving objects in both eyes. We were concerned that he may have been deficient in his right eye but our fears were unfounded. Landon will be able to see his mom and dad! It is a huge relief to know that your son will be able to know your face and voice (he has full hearing in his right ear and at least partial hearing in his left). As long as he can hear, see, and feel how much I love him, I am content for now.
Landon also had his last big blood draws today and had his PICC line removed! We should know the results of his genetic tests they are running on this blood late next week or early the week after. The only tubes and wire still connects to Little Goat are his feeding tube, EKG, and SP02 foot probe (measures blood oxygen levels).
Finally, the biggest news we've gotten since Landon's admission to the NICU. The doctors have tentatively given us "early next week" as a date for Landon to come home! They've decided that there is very little they can do at the hospital that Karen and I can't do at home and want to give us the opportunity to spend as much time as possible with him. They will be begin training us to change his feeding tube, read his monitors, and perform emergency care tomorrow. The day we have been praying for all week as finally arrived but, again, there are definitely mixed emotions.
Karen and I are scared. I know that every first time parent is scared to have their child at home alone but for us to be faced with the added challenges of Landon's condition is extremely daunting. He is coming to our humble home from a facility where he is given 24 hour care by highly trained, experienced staff with state-of-the-art equipment. How can we possibly provide him with that level of protection and management? The circumstances of his discharge have caused me concern as well. If they can do nothing else to improve his condition, how can I? We will be working closely with neurologists, neonatologist, pediatricians, and geneticists from around the country on an appointment basis but there is probably very little that any of us can do.
No matter how scared I am, I am reassured by one thing. It isn't me or Karen or any doctor who is in control of Landon's progress. Landon himself will determine the quality of his own life by how much he is able to learn and how hard he is willing to fight. He has already shown me that he is a warrior and I could not ask for a tougher little boy. He will be surrounded by love and support every step of his journey and we will lift him up in prayer daily. If he has shown me anything already it is that he will always exceed my expectations. We are so blessed to have him in our lives.