Baby's first Christmas, 30 days old

Lucas celebrated his first Christmas mostly asleep. This morning I read the story of the Blue Santa to him and daddy read the Christmas Story to him. He got a teddy bear, coloring book, baby book, some ornaments, some Christmas vests and baby food for Christmas. Next year will be much more fun for him I'm sure!

Over the last few days, there have been some changes to decreasing his diuretics to 2 doses, then going back up to three again as the fluids in his lungs have changed. Today his xray looked great (better than recent days) and his ventilator settings were low. Yesterday his heart rate was very high (in the 200s) which the nurses said could indicate he's dehydrated, so they cut back on the diuretics to help him retain more fluid.

He was very touchy yesterday. Daddy & I had to see some more episodes of his heart rate & oxygen dropping really low resulting in the nurses having to "bag him" - meaning using a bag valve mask (BVM) to deliver breaths manually because the baby has spasms in his throat at times that constrict the ventilator tube, preventing enough oxygen from getting through. He has these often, but usually recovers on his own. When they last long enough, the BVM uses more pressure to help the baby recover without losing too much oxygen. This was a bit scary to see, but we knew he was going to be ok. The doctor also said that he was going to try to reduce the Fentanyl pain medication that has a tendency to suppress functions of the respiratory and digestive system in an effort to move towards taking Lucas off the ventilator. However, Lucas hasn't been liking the reduction in pain meds. His heart scan yesterday showed the ductus in his heart isn't any more open or closed than it was. It is of "moderate size" and the blood flow across it is low. Until something changes where it is causing an issue with the lungs or heart, the doctors aren't worried about it or looking at surgery right now.

We got a call about 1 AM letting us know that Lucas had a fever and that his belly was distended a little. A look at his tummy showed that it's filled with gas. The doctors are pretty sure Lucas has an infection, but do not see other signs yet that its in his digestive tract like bleeding. He was placed on broad spectrum antibiotics and they have removed him from any feedings, as well as increased his IV fluids to compensate for not being fed milk. This is our main concern right now. We hope it's not something serious and will be watching this closely. Prayers that he will get over this new trial quickly! Mommy is tired today after all the family stuff and wishes she could curl up with baby for the night... looking forward to that!