The tube came out about 10 am, and it was a little bit of an adjustment for Mallorie at first, and people (doctors) kept coming by for awhile, checking, saying things like, "It could be awhile," and "It could be a process; she might need some support for awhile like BIPAP," etc. But Mallorie flew! Initially she required some suctioning, a couple of breathing treatments, more suctioning ... but eventually, after I had a chance to sing in her ear, stroke her head, and just trusted God with her, she breathed more and more easily, and mostly has been breathing easily all day. She has only a face mask with some oxygen and cool mist on her face.
I think I was the only one who felt (after my initial moments of panic) that she would continue to do well. Sometimes I wanted to tell a doctor to step outside the room if they had only reservations to speak around her, but that's only because of the recent conversations with my friend Rhonda, who told me to counter any negative conversations around her by speaking God's word into Mallorie's ear. I did my best - I couldn't think of verses, but I did remember songs from scripture, and they absolutely calmed Mallorie.
She's still running fevers, and will continue on antibiotics for awhile, but her blood gases (tests which show how well her body is responding to coming off the vent) looked good. I had to smile when I overheard the attending saying he was going to postpone the post-extubation chest x-ray, because he didn't want to mess with her once she had gotten to such a comfortable state. I was smiling, because the nurse and I had already moved her around, changed her diaper and the soaking pad beneath her, and suddenly it struck me that I could pick her up in my arms (!), so I went ahead and snuck in a big snuggle. It did good for Mallorie AND for me! And she kept right on breathing well, and when we had diapered her, she turned herself as much to her side as she could, and relaxed some more. So I'm saying, he probably could've gotten that chest x-ray with no problem, but I didn't speak up. I had already told God I was leaving all the decisions surrounding her extubation in the hands of the people He had put there to care for her. So that meant I restrained myself as they did some "aggressive" (my mommy persepective only) deep suctioning, even when I saw blood, and out-loud talked myself through the process. Good thing Vera's mommy had already spoken on this topic, because it helped me to remember.
She is right now looking like she is working a little harder at breathing than she was before, and has been suctioned a couple of times and the cool mist was started, so please pray for a good night with easy breathing.
The girls at the top with Mallorie were the Kangaroo Crew that brought Mallorie from Beaumont to Houston 2 weeks ago. Whenever they are on, they check in on her, and today both came by for their Photo Op. Thank you Christine and Lisa. You gave me such confidence in your ability to keep her safe, so I was able to let you fly with Mallorie and John, and drive separately in peace that night. I will always be grateful.
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”