Louis comes home today!

He still had his feeding tube, which we are hoping to get rid of by the new year. And we will have weekly home visits from nurses to be sure he is eating well and gaining weight. But Louis is home!![...]

Dan and I put Louis' room together in hopes of him coming home soon. I am so pleased with how nicely everything came together. The rug is so soft. I can't wait to read book and play in his room. We still have to hang a few frames on the wall and put his fish mobile over his crib, and I have this teepee idea I'm still convincing Dan to help me on. [...]

I'm a mom. I'm a mom and today my baby is three months old. We are in love and we call our love Louis. [...]

Louis has started taking most of his feeds orally (75% by mouth, nursing or breast milk bottle, as opposed to the feeding tube). For part of the day today we were able to remove the feeding tube and see his beautiful face without the tube and tape. He's so precious! I think he has Dan's eyes and my Polish nose. He's the perfect mix of the two of us. [...]

We are over this feeding tube. Today the nurses showed Dan and I how to remove and replace the feeding tube. It's something that will have to be done by one of us, once a week, if they decide we need to go home with it. I hate it so much. We are over the hospital and done with the cords and tubes and constant interruptions. This mama and baby need sleep and sustenance, on our own time and schedule. Everything is hard and frustrating in a completely different way than it was one, two, three weeks ago. It feels like our life is on hold and I do sincerely appreciate how far we have come. This is the most minor and final hurdle in an Olympic record of hurdles (I'm being a drama queen, I know) and I am over it. [...]

We were allowed to take Louis for a walk through the hospital on Friday. Our first stop was to show him the giant Christmas tree, then we window shopped through the gift store, and finally got some well deserved ice cream. Louis slept the entire time.  But it was a nice break from his hospital room. [...]

It's somewhere around 3am and I am wide awake. We have been in the hospital just shy of one month this time. Dan and I decided we should start taking shifts so Louis has one of us there for him 24/7. That way, we can provide consistency for him as we all work to get him through this hurdle and back home with us. [...]

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![...]