Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Wednesday, December 5, 2012

Small steps

Another long day at the hospital, but we are getting closer to our checkout - I can feel it (not really, but a Mom can hope, right?!). Poor little guy still won't eat, but is tolerating the feeding tube and digestion well, so I really think it is nausea from the weaning medication. Hoping to see a change tomorrow. He perked up a lot today, but is still really grumpy. I have a plan to bring up to rounds tomorrow morning and hoping it will work. His heart meds are getting closer to therapeutic levels, which is good. He cannot come home until they are consistent and more precise.

What many may not understand is that last Thursday, Lincoln's life changed forever. I am forever thankful that he survived his second surgery, but it was the worst day of our lives in many ways. His heart was fixed, but in a way none of us had hoped for, but dreaded. It is clear when we talk to the pharmacists, the cardiologists, the heart surgeons, the PA's, and the nurses, that this will be a difficult path for Lincoln. And for the next eighteen years, Murph and I. The medications he is taking have huge risks and side effects that we will have to watch every day for his safety and well-being.  His valve replacement means a unique life path that will make him different from his brothers, cousins, friends, and peers. It means we will be back in the OR at least one more time to replace his valve again. So we are sad, and we are overwhelmed by what this means for our family. And we understand now more than ever, just how important the core circle of friends and family are in our lives. This is yet another thunderstorm in our sweet Lincoln's journey, and we are humbled that God chose us to be his parents. What an overwhelming blessing.  Xoxo


  1. Lincoln is so very lucky to have you as his mommy!!! You, like no other i know, will be able to take care of him and give him the best life possible. Praying that he will soon be able to cuddle and nurse like he has in the past but with a better beating heart that will not cause him pain. No baby deserves this pain but we have to remember that it is happening for some reason that we may never know. The good thing is is that he will never remember any of this. It's sad that you will remember this forever but when we spoke earlier it gets less painful remembering. Praying for your continued strength and patience. Also praying for the family of 5 to be together at Christmas!!! It was so nice seeing and talking with you today. And getting a little peak at that sweet little boy of yours. XOXOXOXOX

    1. Xoxo Thank you again for everything :) we really appreciate your help and support! LP

  2. Lisa -
    I am a friend of Kara Scranton's and just read your entire blog and it brought tears to my eyes and graditude to my heart. Thank you for sharing your personal story with everyone. I am a nurse and I see sick people all of the time, however I feel like I often take my own health and the health of my children for granted. Thank you for putting things into perspective for me. Reading your blog just reinforces the little things in life and really celebrating every day. I will forever keep you and your family especially little Lincoln in my thoughts and most importantly my prayers.
    God bless you!! Sincerely, Amy Brown