When the docs removed Maggie’s breathing tube to her lungs they weren’t sure what she could do without it. She stayed off of it for 12 hours, but in the middle of the night she simply ran out of steam. She couldn’t breathe for herself anymore and they had to intubate again. It was really hard to get the tube back in and there were many reasons for that. The most glaring reason is that her airway is very small.
Doctors are pretty sure she just isn’t built to breathe on her own. According to the doctors we have a few choices, and none of them are easy, but here they are in no particular order.
1) Take her off of life support because there is a very small chance she will have quality life.
2) Give her a tracheotomy. This Is a hole in her throat that would tether her to a respirator most likely for the rest of her life. It’s a dangerous surgery on a baby and it tends to be painful for them in recovery too.
3) Wait. We can wait a little while to see if her airway develops, or maybe they will find something in the x-rays, MRI’s, CT scans, EKG’s, ultrasounds or some other test that explains why there is such an issue.
The neurologist is convinced the breathing problem is not at all neurological. She believes it is a physical issue that needs time to develop. She is still premature after all.
None of these are easy options, and they all mean a great sacrifice. As long as Maggie is in the NICU we are here. Not at home, not working full time and the price of one day in the NICU is crazy. Making the decision to stay for however long it takes, that’s a sacrifice. But that’s the decision we have made. We are going to wait.
I’m ready for this whole thing to be over, but not if it means losing my baby girl. I’m not quitting.
Today Maggie is requiring more oxygen from the ventilator, and her pulse-oxygen is lower that it should be. We are basically just going to wait for a few days before we make any decisions or any big moves. She needs to rest after her marathon battle on Sunday night.
Joy is currently preparing Maggie’s lunch! That’s right, she gets to try milk today! It’s a big day. Thank you God.