Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Monday, December 3, 2012

Busy day

Lincoln has had a busy day - X-ray, Echo ultrasound, and his two pacers, catheter, and central tube all removed. He only has one internal line left! Poor little man is sleeping peacefully finally after a busy morning of interruptions and painful removals. I have held him twice to feed him two bottles and changed his diaper (which is terrifying BTW). He is pretty fussy still from the withdrawal symptoms and probably his surgical wounds. He is very congested with each feeding, which makes it really hard for him to feed. We cannot wait to see him look at us with that big smile and talk in his happy coos. Right now, they sound like he is lamenting or yelling at everyone around him. He glares at the nurses when they come near him now- we joke he is going to be a grudge holder!

Dr. Haw came in again to check in on him between surgeries. He is truly a caring man, and genuinely  shows how sad he is that he could not repair his valve on Thursday. He told us that he normally is calm and collected during surgery, but that in the OR, they have a swear box. He joked that he filled it up on Lincoln's second bypass surgery. I think he is devastated Lincoln ruined his statistics, but had been so compassionate and apologetic (even though there was nothing he could have done).

Dr. Mike stopped by this morning, and gave us his pediatric perspective, which was nice to hear since he will be helping us along the way more than anyone else. He's been such an advocate for Lincoln, and we feel blessed that Lincoln has such an amazing doctor on his side.

Still working on the diet information. Those of you who know me well with laugh because two doctors have called me "meticulous" and are working on finding out how the medication and diet restrictions work with nursing. Usually, this medicine is used on older people, not infants. The pamphlet they gave me on one of his prescriptions is 34 pages long if that gives you an idea of how
serious it is, and how complex the process can be. But, we are trying to take it one day at a time. This Mommy  is just happy that I could hold my baby today. Small blessings. Xoxo


  1. So happy for you and your family!!

  2. SOOO happy things are finally going well!! Love y'all!! Lucy and Lenny