” Confidence comes not from always being right, but from not fearing to be wrong.” – Peter T. Mcintyre

Five for Fighting- The Riddle

Today, they announced that they were going to take steps in weaning her off from the liquid caffeine used to jump-start her central nervous system. This order was passed down from the same neonatologist who was adamant about pulling Gracie off the ventilator. You have to admire this doctor’s aggressiveness in order to trust him.  He wasn’t wrong about the ventilator and we have no reason to not trust him this go around. After all, he is a pro at what he does and I have watched him work on a weekend with a stained waffle knit shirt and some jeans  in a room full of critical care preemies with billilights and staff members tripping and falling over each other trying to deliver test results to him.  He is a doctor who realized and knew his potential and purpose in this world.

During this time, he not once became stressed or flustered due to his calm and cool demeanor. He always wore a smile and listened to the people around him and is open for discussion and suggestions, when a better alternative is presented to him he tells them to go for it. Being able to have that much faith in your team when it comes to dealing with delicate lives is his progressive approach. The approach is fueled by confidence in his experience along with his staff’s. Although initially I had more confidence in Gracie than anyone when she was first-born, he has always said that Gracie was the star of the NICU because she was the smallest.

This neonatologist has become a man whom Ashleigh admires when it comes to the health of Gracie and  in my opinion between him and Ashleigh’s favorite doctor, they are the one- two punch of the NICU when it comes to saving and preserving  preemie lives. There are certainly not enough thank you’s in the world we could ever give these two men. 

Caffeine is used in the NICU as a stimulant; it is also a diuretic. The coffee I drink every morning is rich in antioxidants, but in this case it is Gracie’s lifeline for breathing. Taking away her caffeine can carry serious repercussions such as her forgetting to breathe on her own. I have never witnessed this in real life, but I know that I do not want it to be showcased to me by Gracie. Unfortunately, Ashleigh witnessed this several times while Gracie was being weaned from the ventilator. In this case, the theory is once they pull her off the caffeine, her body’s programming will kick in and get her lungs to work on their own. Now, we only have to have a little faith in Gracie’s fragile body. During these times you can only wonder the power of the human spirit.

The fear is that she may forget because the programming isn’t there. If that happens, then she will be more than likely re-intubated. Intubation for a baby is not only traumatic, but the word painful doesn’t cover it. You wonder as a parent if she will have enough strength to recover and keep fighting or will she just quit. intubation also creates long-term damage in the larynx or the human voice box along with asymmetrical palates. Mentally and emotionally it would also mean that we were backpedaling on progress.  I hope that in Gracie’s interest we will never have to revisit intubation ever again.

It has become harder and harder for us to see who she has become and instead always see her as the small fragile being she once was. From day one, they always tell you that she will always be behind in size and development until the age of two. From that point on, it will be up to us for her to catch up with the rest of her peers. I welcome the challenge because raising a normal  baby right now would be so much less of a challenge.

I now understand why “preemie mother syndrome” is such a hard habit to kick. It is just like that Subaru commercial where the father sees his little daughter in the driver’s seat as she prepares to drive off.  You can never escape the initial impression a child leaves on you no matter how hard you try to wipe it off.


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