Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Sunday, December 16, 2012

First weekend home

Our new life. I feel like we are bringing Lincoln home for the first time, again. Starting over with a new baby. And it has been joyful, exhausting, stressful, and soulful. It has been eye-opening and God-filling. I am thrilled to have him home and watch the big boys worship him in small moments and big ways. We are blessed. And he is readjusting to his new life, new heart, new medications, and a loud house :) The cardiologists call the PICU  "Vegas" because of its fast pace and the lights are always on. Lincoln's nights and days are all discombobulated, but that will work itself soon I'm sure.

This experience has taught me so many lessons. I knew I had amazing family members, friends, and colleagues before, but I now truly understand the powerful, unconditional compassion, concern, and love that exists there. And it has made me a stronger, better person. Thank you to all of you who have shown us the power of prayer. People who don't even know us have written thoughtful posts and prayed for our baby boy- that to me, is true humanity.

Teri Harmon came down to the hospital to teach me a stress-relieving TRE session -that is an altruistic gift that has helped me to deal with all of the stress and trauma. Tuesday after the first surgery, I joked with her that I hadn't lived trauma like most. Little did I know, a few days later I ate my words! Since my first two sessions, I have been using that technique to relieve my stress and pain. I highly recommend it for everyone and everyday stress.  Teri, you are the best!

This upcoming week begins our new marathon of appointments, education, and lab work.  It is a lot to digest, and pretty scary. The INR levels are so important in a little man of eleven pounds, so we will have to monitor him very closely. Every time he grows, takes medicine, starts food, or gets sick, his levels fluctuate. And each extreme is serious. If it is too low, he runs the risk of a stroke. If it is too high, we have to have him admitted into the PICU, reverse his INR levels, and hope there is no internal bleeding. But he will be ok. We trust and have faith that we can get through this, and it is a much better world than our prior situation of heart failure. We just keep thanking God that he is here with us.

And to all of you who have been "walking in our shoes" (thank you Atticus Finch) and have been there for us - thank you! Never did we imagine we would be in the hospital just shy of three weeks! We so appreciate the meals, treats, shopping, errands, decorating, laundry, visits, and offers to help. And we are forever indebted to the staff at Big Steps. The big boys have so much fun there, that it was an amazing diversion from the disconnect at home.  In Jackson's language, " Big Steps. Fun. Friends." We are blessed with a loving circle of friends and family. Thank you so much!


5 comments:

  1. Another journey beginning and you walk it with such courage. Thank you for sharing on this blog: it helps us to see our prayers at work. It also encourages us in our own lives to see the beauty of your spirit and that of your family. Know that you do not walk alone.

    ReplyDelete
  2. So glad to hear you're OK. We continue to pray. Love to you all!

    ReplyDelete
  3. Praying for your adjustment to home and for the ability to still follow your "Mommy instincts" as you move into this next stage. - Kristin C.

    ReplyDelete
  4. Lisa, I am so thankful that TRE has been helping you. It is truly an amazing therapy. I am continuing to lift up Lincoln in prayer, as well as the rest of you! Please let me know if there is anything else I can do. I'd be happy to make a complimentary house call and include a little massage at the end of a TRE session. Just let me know. May God continue to comfort, guide and direct you as you rest in His care. Merry Christmas....... Peace on earth. Teri

    ReplyDelete
  5. I've been thinking about you guys a lot. Praying things are going well with managing Lincoln's care and meds and praying that you guys were able to have a wonderful Christmas together.
    Nikki Hein

    ReplyDelete