On Saturday we moved out of the PICU and onto a regular pediatric floor. The rooms are a bit more private, and the nurses have more patients. Louis' goals now are to gain weight, take all his feedings by mouth, and to ween off the sedation medications. After a heart surgery and prolonged recovery, babies have a hard time taking full feeds by mouth because they get tired very easily. This is normal. One of the doctors made the comparison that eating to Louis is as if you or I just had open heart surgery and then decided to go for a run. It's hard. It takes a lot of work. Mostly, he is just too tired half way through and he falls asleep. We give him time to make his best effort and then the rest goes down his feeding tube. [...]

I have never known such gratitude for life's simple pleasures like holding a sleeping baby. I also have never known what great strength I possessed until I was forced to use it. And I have never known such selfless care that I have witnessed everyday; from my parents, from Dan, and from Louis' team of doctors and nurses. Truly a sincere and abundant thanksgiving. [...]

All of my defeat from yesterday melted away when Louis' team decided, after some tests and tweaks to his medications, to remove his breathing tube. Dan and I heard our sweet baby boy cry for the first time in two weeks![...]

Yesterday, I got to clip Louis' finger nails and change his diaper. Funny how those chores are usually dreaded but in my current reality, they're a treat. Things seemed to be on track. Louis had his chest tube drain removed and stitched up. His arterial IV was also removed, which means he's on lower medications. But I'm really frustrated today. There's no where to put my frustration, and no one to blame it on or anything to take it out on, so bear with me.[...]

It's so difficult to sit in a waiting room. There's a tv screen that shows patient numbers and what part of the procedure they're in; "in pre-op, surgery, to post-op recovery" etc. It's agony watching the screen, so today Dan and I decided not to look at what number Louis was. [...]

Today was a good day. The last few days have been long and hard. Louis was put on the bypass machine (ECMO). Don't google it. The google definition is scary. Let me tell you it's specific purpose in our case. Louis' heart had a lot of stress this week so to help him rest and heal better, they used the ECMO to oxygenate his blood for him. This allowed both his heart and lungs to rest and recharge after a busy week of invasive procedures (though, his lungs are in great shape and we aren't concerned with their ability to get oxygen to his blood). [...]

Today, our team of doctors decided to adjust Louis' heart rate with temporary pacing wires. This is to improve the synchronicity of his ventricular contractions (allows his heart to squeeze all over at the same time). It's working well.[...]

The doctors intended to resect Louis' left coronary artery and shift the position a bit to improve blood flow. Once in surgery, they found the position of the artery was good, but there was some tissue pushing on it which was restricting the blood flow. [...]

Louis is currently undergoing an additional open heart surgery to resect a coronary artery. 

If you pray, please keep praying. [...]

Louis is two months old today. 

Dan and I stepped away from the hospital so we could go vote. I forgot to change my address after I moved in with Dan so I am waiting in line, alone. The line isn't too long. I see a mother in front of me toting her child in a stroller, and one behind me wearing her newborn. Everyone is coo-ing over their new babies.[...]