Ramona had a pretty stable night. Her blood gas was down a bit but nothing serious.
During rounds today the doctors were pleased. They continue to lower her Nitric Oxide level and it is now down to 4 from 20.

The big news is that they turned off the paralytic at 9 am. At about 11am she had a little cough and around noon she was twitching her toes a little bit! At about 12:30 little Ramona Mae opened her eyes and hazily looked around before going back to sleep. She is still heavily sedated so she can’t focus on things yet but Jane shared how wonderful it was for her and Andy to get a glimpse of Ramona. What a miracle to see that she is still in there working on getting well. It gives them hope.

The doctors have explained that Ramona won’t have normal wakeful/sleep periods. She will be mostly asleep but it was very encouraging.

Her stats remained good all through the changes they have made so far. Her pressure was up a bit and her oxygen saturation has been hanging out about 84. The rate on her respirator has been turned way down and is at 18. Ramona has taken a few unassisted breaths!

Miraculous baby steps for this little baby girl.

To help understand where she has come from to where she is now, I interpret what Jane has told me this way. During the open heart surgery Ramona was in a tremendous amount of distress. They “pushed the pedal to the metal” so to speak and added all the medical measures they could to do things for her and take off some of the distress. When they took her off bypass she didn’t respond well and the doctors had done everything they could for her. That is why they called Jane and Andy to come down fearing the worst.

Since then they have been removing the extra measures to find out where her threshold is. Every baby has a level where they still need medical help while healing from this kind of surgery. Jane says they are taking things away and waiting for her to say “uncle.” So far Ramona hasn’t hit that spot where she says, “hey wait I still need that.” But she will reach it. She has come a long way in a few days from receiving everything possible and not responding to tolerating the removal of some of those measures.

It is hard for Jane and Andy not to be irrationally exuberant since to them Ramona is a Rock Star! As for me I think she is a rock star too. The doctors are taking more of a relaxed attitude when they come in and make changes rather than being so serious with every change. It is very good for them to see.

She still has a long way to go but today is a day of miracles.