Today we had two appointments: The first was with pediatric surgery to discuss our options for a G-Tube, and the second was with the Hummingbird Program to discuss comfort care.
We are being forced to make decisions that no parent should ever have to make; and, without God’s miraculous intervention, this is far from the end of those decisions.
I know that Tori is not the first child to need feeding tubes, and I know that the G-Tube will greatly improve her comfort and it will reduce the stress around NG tube feedings when I am by myself with her again. But, these are not decisions that we want to be making. I just want her to be whole again, to be healthy and growing and normal.
I found myself feeling paralyzed in a way as the surgeon discussed our options – keep the NG tube since her life expectancy is so short, have a G-Tube (“Mickey Button”) inserted surgically, or do the G-Tube along with a Nissen (See details here), which is what was recommended by Dr. Escolar, but is also a major surgery.
They offered a great deal of information and asked us to think about it at home and let them know. We decided that we will do the G-Tube but will wait for the Nissen since it can be done later. We will see how she does with just the G-Tube for now.
We then headed over to our Hummingbird Program appointment.
Essentially, the Hummingbird Program is for children who have chronic or terminal illnesses. They provide support to the entire family as well as the child. This was our first meeting with them, and it lasted two hours.
We discussed comfort care for Tori and pain management. We were given a prescription for morphine and Valium to use if she is in terrible pain that the other meds aren’t relieving.
In that moment, I was forced to re-enter the reality that our daughter is dying. There is a fine line between living in hope for a miracle and living in the reality that our baby girl has a terminal illness…that her life expectancy can likely be counted in months, not years.
The pain we are experiencing as her parents is palpable at times. My heart hurts like never before. Yesterday we began discussing what we want to do if God chooses to take her home – a discussion we never finished because it was too difficult. No parent should ever have to plan their baby’s funeral.
We are waiting to hear when her surgery will be so that we can plan a trip to California to see my side of the family.
And we are still praying, along with thousands of others, that God is waiting for the perfect moment to heal her.
Some of the best Bible moments are the impossible situations that are followed by the words, “but God…” We are praying that this is one of those times.
Even So, Joy 
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