Late at night, when the whole house is quiet, I think of all Louis has been through. Maybe that's just how I process; slowly and in bite size pieces.
It doesn't feel a whole lot like Christmas this year. Though I am grateful to have my sweet baby home and healthy, I am missing my family and all of our traditions. We decided to stay home, as I am not ready to be far away from Louis' doctors and I don't want to risk any sickness for Louis during flu season.[...]

Louis had his check-up at the cardiologist today. They did an echo-cardiogram (ultrasound of his heart), an EKG, and they did some testing on his pacing device. His cardiologist says everything looks good. His heart function is great, and they would like to start weening him from the blood pressure medications he is on. The electro-physiologist said Louis' device says it has 8 years of battery remaining. Pacemakers are unique because their longevity depends on how much power is used. Louis' pacer could need to be replaced anywhere from 5-8 years. After about 8 years they will want to replace it regardless because he will be so much bigger. I am still half hoping his heart electricity will return. We'll see. [...]

I am sitting on the couch in my pajamas. Louis is taking a nap next to me and Dan and I are toasting to Helen DeVos Children's Hospital, the incredible staff in the Pediatric ICU, the skill of Dr Haw, Dr Hillman, and Dr Giedruis, Louis' surgeons. [...]

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. [...]