The Road ahead...

I am not sure where to start. I will start with our Dr. appointment, it went exceptionally well, a ton of new and reinstated information, but we are both thankful and impressed with the staff and care we will receive. I am scheduled to deliver via c-section on Monday June 29th, they feel that this is the BEST for Phoenix and I. Phoenix is not growing, he has only gained ounces since 2 weeks ago, which weakens his chances at survival these next 10 days, we need a miracle here. He is currently a little over 4 lbs.

The Neurologist who will be operating on Phoenix is the second in command over the whole hospital and he took time out of his day to sit with us and answer the questions that he could. At this point without the MRI (which is scheduled for next friday), the only sure operation we could talk about was the covering of the exposed spine and spinal chords and the shunt that will have to be put in the head, both of these surgeries will happen within 24-48 hrs. of Phoenix's delivery. These are the details we were wanting to hear, we also had to discuss to what lengths we are willing to go to sustain life, should his diagnosis be "non-viable" with life. They will take cord blood and have it sent for analysis right after birth, within 24 hours they will be able to tell us if his birth defect is one that exists or a genetic defect that they do not know of. These are major decisions that we need serious wisdom to make and peace to move forward with all the other details.

After meeting with the Neurologist we met with the Social worker over the NiCu and who works directly as a liason between all the different programs and people that we will be working with. She was a great help in answering loads of practical questions, as well as preparing us for the realities of what lies ahead. Let me just say this FIGHT is not over. Phoenix will be shown to us quickly after they deliver him, we will not be able to hold him as their priority is to assess him and get him the proper support his body needs immediately. A team and by team I mean (2o plus) doctors, specialists, NICU nurses and student doctors will analyze and care for Phoenix, asess all that they can to come up with the plan for Phoenix in the hours and days and weeks to come. This process takes about 2 hours, which during I will be in post opt. After they bring up to the room i will be staying in, we will be able to see Phoenix, we will not be able to hold him still, until they feel he is strong enough to exert this energy. I know this sounds insane and over the top, but these hours are delicate and they have to take every precaution to enable him to be strong enough for surgery, we will be able to touch him through the bed he'll be in. Even in the days following, holding him will be based on His strength day to day.

Mike is still not living with us, but as of monday afternoon, he is just going to come home during the day, since he has to restart class if he takes more than 24 hours off of school anyway. He feels that it is right for him to be home these next days in preparation for Phoenix, I whole heartedly AGREE. I will be at the hospital all afternoon for Pre-op and a NICU tour. Also on friday morning I have my MRI and afterwards we will meet with Dr. Shields and possibly the neurologist again.

That is all the details. As for Mike and I we are just Trusting that the road ahead is paved with God's grace, kindness and FAITHFULNESS. We will get through this and Phoenix's life however long or short, will teach us, all of us the beauty of FIGHTING>>> amongst many other beautiful truths.

Thank you for loving us and walking through this time with us!!!