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!!!

A week of sweet surrender.

Last Thursday I had my first Dr. appointment here in Texas, which has taken me a full week of processing and crying and TRUSTING in God. The ultrasound was long per usual and the Doctors report not good, honest and thourough, but not hopeful. Phoenix is a MYSTERY. he has so many different "issues/ anomalies" that they are not sure what the best and right treatments (surgeries) will be, "IF" and she emphasised the if he were to make it through labor and delivery, we would work with many different surgeons and the NiCU would be our home away from home for some time. Now most of this was a reality to us anyway, but with new evidence of Phoenix having a new condition, called HPE, Stillborn to a very short life was a reality that we had not been entertaining and now we are at Peace with it, but are hoping for much more life for him.

This past week has been full of questions, that tend to begin with WHY??? and in the end all those questions have opened the flood gates of understanding; that we'll probably never understand much of this. But do we really understand much in this life, all trials, heartache, and rough roads only make us stronger or weaker. I believe they are full of new discoveries, of who we are, who God is and who the people we surround ourselves with are. I love that aspect, espiecially when it's all said and done, you can see much more clearly. i feel overwhelmed by the Grace of God and the amazingly supportive and encouraging friends and family I am walking this road with, I am rich in this life. All of this to say, letting go of having a plan and realizing that LIFE is LIFE, whether Phoenix's is days or a full life, it has been and will teach us so much of the beauty and fight of living, that we shouldn't take one day for granted or one life. I see all this healthy babies daily and I think, what a blessing and then a moment later can take Rowan for granted, this is the process isn't it? Loveing the ones we have and growing in the Love of God which is deeper and wider than anything we know.

This week is one of great anticipation and preparation for the birth of little Phoenix, we are so excited and elated, for the first time this whole pregnancy. We haven't had a chance between negative reports to really get excited, but as the weeks draw close to an end, and the continual growing of my belly we know the day is near. Tomorrow, we have an appointment to meet with the team of Doctors and surgeons that will be working with us and to hear a "plan of action" after he is born, of course all of that is pending how severe these different issues are. I am suppossed to be induced in the next couple weeks, so they will hopefully set that date as well tomorrow.

Love to you all and will update as soon as I know. Thank you for walking this journey with us!!!

The many roads of my heart and how they all lead back...

It is amazing how in just a moment of humility, my eyes can be lifted and my heart feels lighter in the midst of challenge coming everyday. I am thankful for that. I feel refreshed as Mike and I finished a weekend together, having a husband is a reward that I have felt guilty for needing, yet I know that in this season more than ever I need his support in every moment of the day to day and I realized that is right.

On the note of Mike moving in potentially with us, it has been moving forward on the paperwork side of things. These are emotional times, because as usual I have to deal with Dr.'s and their protocall and the in-betweens, in these moments it is just trying to clearly explain what I need and hoping and praying that it is enough to move the right people to make the best decision for us as a family. The truth in all of this that I cling to is that God is ultimately in control. I have faced more challenges this week emotionally with this Truth.

I met a Mom at the pool the other day and she has 2 children and is a labor and delivery nurse and when we got to talking and I told her about the baby, she had some thoughts that were challenging and caused me to re-evaluate what I KNOW to be Truth. You see in the medical field and actually most people would ask why I would want to continue on with this pregnancy as Phoenix and we will face many challenges on all levels if he is not healed.

She said," do you know how hard this baby's life will be? and your life will be?"

I replied, "yes, I know it will be challenging."

That is all I could muster at this moment, because I never faced a question that directly, only the underlying implications that the decision I was making was wrong or selfish. These are hard thoughts for some, but loads of people think this way toward a life that is not "optimal quality".
When I got back to the apartment I lost it, thinking about what have we come to that we have the ability and control to decide who has the right to live and who doesn't and what an "optimal" life looks like... I believe and stand on that God knit this baby together and there is a purpose and destiny on his life even if it is full of challenge, which of course would break any Mother's heart to know the challenge of just "being different" than all the other kids. It is a mystery to the Doctors why my body continues to grow and nurture babies with these birth defects, when it is a mystery to a dr. I see the fingerprint of God even more clearly.

So many times this week Mike and I have faced the thoughts of the road ahead, we know that God will give to us the Grace we need to face whatever is ahead, yet more than ever we have been pleading with God to heal and restore Phoenix' body. Often times in our heart we feel more prepared for God changing our minds to see as he sees and that this child is Beautiful and Perfect to him in whatever we perceive as lack, amazing how different we see.

Well that is a nutshell of what these days have looked like. I have an appointment next thursday, a level 2 ultrasound which is pretty much routine for me, please pray that the Dr. would be compassionate and respectful of all that we desire for this baby. I am hoping that questions will be answered and the path ahead be clearer. This will be my first meeting with our Doctor and I must admit I am a bit nervous about the whole thing...

On the front of feeling settled and less whirlwindish, I feel encouraged and strong for the Roads ahead and am believing that it can only get better and hopefully a little less bumpy roads.

Love to all and I will update soon I am sure.