When Ramona was on the brink of death last Wednesday, all I wanted was to see her open her eyes one more time. In my grief, I just couldn’t imagine not having a chance to spend one more moment with her.

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When I brought her to the emergency room, I had no idea how sick she was. Usually when you show up to an ER, you can plan on waiting for hours just to see a nurse. When I checked in at triage, the nurse looked at her clipboard and took us immediately back to a room. I said “Maybe I should give her a bottle so she’ll be calm for her exam”. The nurse actually laughed a little and said “Oh honey, she won’t be able to eat for a while”. Within about 3 minutes there were literally 12 people in the room running around, poking Ramona, yelling things out and scaring me half to death. That was when I called Andy and said “You better get down here”.

So, I never really got a chance to sit her down and say “Baby, you’re sick. The doctors are going to do everything they can to help you. Don’t be afraid. Try your best. We’re proud of you no matter what”. When Ramona survived the night I was so relieved just to be able to go to her bedside and tell her how much I love her. In that moment I felt that just seeing her one more time with her eyes open, just to connect with her once more the way we used to would be enough.

Yesterday I was talking with the nurse practitioner about what life might be like for our family if we are able to someday bring Ramona home. She mentioned that she would most likely need a feeding tube that would be through her nose and taped to her face. I’m ashamed to admit that I burst into tears. It’s amazing to me that in the space of a week I’ve gone from crying out to God to save her life, to grieving that she might not be “normal” when we bring her home. I’m trying to rest in the joy of every moment with her and not worry about what the future might hold for our family.

Andy and I think that we do well with big changes. Simon’s overnight adoption has been such an amazing experience. The adjustment to life at home with two small babies was such a challenge and a joy to me. I’m holding on to hope that this new chapter will bless us in ways we just can’t see yet.

Here’s the plan for Ramona today: They are continuing to wean her off the narcotics and sedatives. They give her methadone and ativan to compensate for this change. As she wakes up more they have told us to expect her oxygen saturations to fluctuate more. She had a spell this morning where they came down into the mid 60’s. They said this would be normal for her and as long as she can calm herself down without any drug intervention it’s okay. They are also reducing her ventilator rate little by little. If all goes well they thought they may even be able to extubate her (take the tube out of her throat, for those who don’t watch ER) sometime this week! We are so hoping for that because it will really help her remain calmer and she’ll start to look more like her old self.

On a non-medical note we put a shirt on her today, I’m going to try and post a picture. We had to cut it in the back to accomodate all the tubes, but it’s still pretty cute. Sorry Jen, it was one of your hand-me-downs and the damage was done before I realized it wasn’t mine to mess up. We also brought over her Baby Papasan and if she wakes up and seems stable enough, we might move her into it so she can be a little more cozy.

Thanks for your thoughts and prayers,

Jane