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