A Failed Extubation

From January 10, 2010 -- a failed extubation.

Sunday, January 10, 2010 3:56 PM, EST

Day 11

I went to see Margaret Grace. Her nurse Nadia said she had a rough night, which was news to me as she had been pretty calm up until 10:30PM when David and I went together to see her. Despite this, she was off the vent and onto CPAP at 31%O2. The weekend neonatalogi

st (not on staff at St.V's) was trying her on that because she fought the tube when they tried to change it this morning. This Dr. said it was probably because she needed a large tube that wouldn't get clogged as easily.

I was amazed to see her off the vent when her main Dr. had told me not to expect progress this weekend. And yet, her chest was heaving and her breaths were more labored and the left side of her chest is larger than her right, it was almost harder to see her take this new step, because I could tell it was hard for her. Here, I'd been waiting for this step since day 1 and when it came, I was worried it would be too much for her. They will check her 02 levels and she may very well be back to the vent tonight. And when the nurse sunctioned her, her O2 saturation dropped as low as 60% (90's% are normal) and took a few moments to come back. The nurse even had to call the doctor over but by then they had started to come back up. The nurse told me to expect this back and forth a lot, that's why they call the NICU a "roller coaster."

My reading about RDS is that the lungs take time and all these machines give them that time to mature and heal. It is interesting to think that all this intervention isn't healing her, her own body in its own time is healing her, but they are easing the way for her to do this. How much more out of my hands as a mother could it be? This is not an easy reality to accept. We are visiting her about 4 times a day, but our visits are not always helpful. Sometimes when we speak to her or touch her, her 02 levels drop to more critical levels and we must stop suddenly. On one hand, her medical team encourages parents to comfort MG with our familiar voices and womb-like touch, but on the other hand, she needs to remain stable in her breathing and our presence can be too much. Since she first persisted against the odds after our water broke at 18 weeks, MG has tested our need as parents to intervene on her behalf and try to make it all safe or predictable. We had to trust her and read the signs that she was still fighting and growing in her own time and as best she could. The nurses described the process of not re-intubating her and trying the CPAP as their responding to her cues too. As she describes it, the roller coaster ride of trying to read these signs and deal with the risks and consequences is about to begin.

The doctor said she still hears a murmur which may indicate the PDA is still open, but we won't know how much until Monday.

I caught up with Jayden's father. They still need our strongest prayers as his right lung collapsed and the left threatened to when they tried to help the right. Jayden is on the oscillating vent but slowly coming down in oxygen percentage. His father was touched by Larry's lyrics on MG's isolette. Everyone say a prayer for Jayden tonight as you sing these words: "Breathe on me, breath of God, fill me with life anew. That I may love as thou dost love and do what thou dost do."

After the hospital, I went to pick up James at church so David could lead a mini-retreat. He was talking to his "church friend" as he called her about his "baby sister in the hospital." Her baby sister was in the nursery with them, so I think he made the association better knowing his friends' have sisters too. When we came home, we passed MG's hospital. He was glad to know where his baby sister was sleeping. When we came home and I opened this site, James said, "I want to see my baby." For some reason, he prefers the "blue light" photos. I think the mask reminds him of the "Superhero Kit" that Acadia gave him as a big brother present. I look forward to the day James Love and Margaret Grace can play WonderTwins like Ward and I did.

With Love and Grace,
Beth