Day 43: Still doing well!

Another good one! Lily has been around 30% oxygen on her ventilator for most of the day, and her lungs are showing improvement relative to yesterday with less severe desat's... more like quick dips in blood oxygen saturation than a real "desat"... Which is below 83% blood oxygen saturation for a period of more than five seconds. We can now notice when her blood oxygen dips before it shows on the monitors... her skin briefly gets dark, similar to its hue when she was first born.

A lot of people have asked how Sara and Addie are doing. They're doing well! Addie seems pretty unphased... might think that this is how all babies start out. She's adapted to my nightly visits to the hospital. I miss putting her to bed, but that's the trick- balancing time with the kids! Sara is doing well, she really is such a strong woman. We have a lot to be positive about, and are focusing on those things. Are there ups and downs? Of course. When we get down, though, we remind ourselves of something that happened recently. It reminds us how incredibly fortunate we are. Even though the path is long... it is a path, and the road goes on.

It was the day we found out that Lily's second brain scan came back clear - I was on cloud 9. I remember telling Sara I felt so elated I could run around and hug strangers. That evening, I was in the NICU - must have been around 9pm. There's no easy way to write about this this... but I noticed that another family was in the room - dozens of people, behind a curtain. Usually, only two people are allowed bedsite at a time. Their entire family was there with their priest, praying, singing hymns and holding their baby girl while she went to God. It was absolutely heart breaking. I had to leave. Couldn't do it. Before leaving, I asked the nurse to offer them some of the Holy Water from Lourdes to bless their baby, which they did later that evening. On the way out I crossed paths with the grandfather - told him I'd be praying for his family's strength and courage. I ended up hugging a stranger that day, but not for the reason that had crossed my mind that afternoon. 

When I went to visit Lily the following day, the baby's incubator was empty. Sterility had returned to the previously darkened corner of the room. Every time I'm in the NICU, that corner is a poignant reminder of how fortunate we are. It is a poignant reminder not to take a moment for granted... not to take any healthy baby for granted. I hate to post such a sad story - but it's reality. Some babies can't be saved. Every single one that is - is a pure miracle!

We're so, so grateful to have Lily, so grateful that she is still fighting. We're also praying for that family, for their strength, and for their courage.