Friday, April 26, 2013

We Have a Move Out Date

Day 4

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.


5 comments:

  1. And he is blessed to have parents like you !!

    ReplyDelete
  2. What wonderful news for all of you! Being scared is normal, but I have a feeling you and Karen will do just fine at home with Landon. If it hasn't already been brought up by the NICU staff, ask to "room in" with Landon before bringing him home so you can have the experience of completely caring for him yourselves (but with the comfort of help just around the corner). The most important thing you can do for Landon is to continue to love him, advocate for him, and don't take "no" for an answer! Landon's life is not about what he can't do, but what he can do and as his parents you can help maximize his potential--ask for OT/PT/Speech and Birth to 3 referrals if they have not already been offered, and take advantage of the services available to you to help make Landon's life the very best it can be for however long you are blessed with this handsome little miracle.

    Enough from me for today. I hope that you all have a great weekend and I am keeping your family in my prayers.

    ReplyDelete
  3. Dear Shrader Family, thank you for starting this blog. I was the first nurse you all spoke with upon Landon's admission to the NIC. I have been amazed at your strength since that very first moment. Being understanding of the process and wanting to do the very best for your son. Continue to focus on the positives and cherish every moment with your precious gift. He was given to such wonderful parents for a reason, there is a greater plan for him and your family. Continue to strive for the best for him, as you prepare to leave the security of the NIC and enter the world of appointment after appointment, remember that you are the ones that know him best and you must be the ones to advocate for him. Let us know if you need anything throughout this adventure of yours.

    By the way, I've said it since day one... Landon is super cute!

    ReplyDelete
  4. God has given Landon to you for a very specific reason. I honestly feel He has a HUGE plan for him - and you! There's nothing more important than holding your baby as much and as often as you want to - even when they're "normal". Landon has the VERY best parents and immediate family that any baby could have. I know God doesn't make mistakes and this will be for His Glory! Miracles happen every day!

    Please know, Trent & Karen, the Zeorian family is praying for you and your journey. Landon is one lucky little boy!!

    ReplyDelete