On the Floor

We've been on the floor for 2 days now, and it's a different beast than the NICU. We are hoping that Lucas can go home soon. But we are constantly waiting for him to tell us when he's ready to go. He's still having difficulty with his 'force' feeds of 2 oz of high calorie food (they are supplementing my breast milk with powered formula--something I'm questioning) over 1.5 hours, every 3 hours. I'm wondering if the food is too rich for his tummy, and he's refluxing. He's on a reflux wedge, and because he's essentially vomiting every so often after his feeds, he breathes faster. So last night the nurses and on call docs were concerned enough after one of his feeds (which he eventually vomited up) that they took an x-ray of his lungs and turned his oxygen level up to .2 (from .1). He's not fighting to breathe as much as a consequence, and the plan is to let him settle into this level and see how he responds to the lower setting in a day or so.

He's also being tested for the alpha 1 trypsin disorder (mentioned in a previous post), and a common virus called cytomegalovirus. These tests will take a few weeks for any results. In the mean time, we're still waiting for any ideas or suggestions from the GI consult, and now the team is recommending that a liver specialist come on board to keep an eye on Lucas's liver. The bilirubin level is about 8 now, about the same as his previous test, but the liver enzymes are still rising, with a steeper slope. This is not a life threatening issue, but one that they want to keep an eye on as it may indicate a chronic disorder. But we don't know. Nor do the doctors at the point.

Oral feeds are going well, with a steady small increase in the amount he can take at a time and the length of time he's suckling. Yesterday, we breastfed, and today we tried a very slow flow bottle (with a premie nipple). He's doing well, according to the therapist who is working with us. He does get tired after 7 or so minutes, and then it's time for his 'force feeds'. I know he has to eat and grow. But it's frustrating to see that he's not that hungry since the food is being delivered to his stomach without much effort on his part. It's a fine balance of feeding him orally and using the feeding tube.

So, my my parents leave tomorrow afternoon, after 3.5 weeks of helping out with all this crazy stressful stuff after Lucas was born. They've been such great help and we will miss them dearly. My mother in law will be arriving on Tuesday. So my husband and I will be flying solo with our daughter and Lucas -- taking turns with each of them for the next 3-4 days. The transition will be difficult. But we'll manage.

I'll leave off here with a few images of my parents with Lucas, and finally a moment when both Lucas was awake and big sister was available to interact with him.

Here is my dad with Lucas:



My mom with Lucas:



Our family: