Monday, June 29, 2009

Out of surgery and stable

Phoenix got out of surgery at about 9pm-a couple hours sooner than expected. He is stable and resting. They were able to begin the process of covering the spinal cord opening at the base of his back and successfully placed the drainage shunt. Mike saw him afterward and spent some time with him. Meg's getting some much needed sleep...

They are now thinking Phoenix will be at Methodist Hospital for 6-8 weeks as his back heals. Mike's leave from military duty is only 3 weeks at this time...he'll be pursuing a longer leave of absence as soon as tomorrow. This is certainly an area of cocerm and prayers would be much appreciated in this regard as well.

Megan's recovery has begun well...she's been up on her own and although she's doing relatively well, she is in a fair amount of pain (as expected)...

Thanks everyone for all your support, it's being felt tangibly every moment.

Phoenix in Surgery

6:30pm-Phoenix is in surgery now. Mike was able to meet with the new Dr., and hold phoenix's hand and kiss his face. They have told us that the surgery is more risky Now b/c of the abnormal spine curvature and defect bone formation on the lower spine. They have also told us more details about his paralysis. He has little or no muscles in his legs, clubbed feet and malformed hips- that he will never walk, that he will not have bladder/bowel control and that they have no idea about his mental capacities yet...he should be out of surgery around 10:30pm...will update as new info comes to us. Thanks for continuing to pray for us, we feel it!

Phoenix update

Because of the complexities of Phoenix's spinal defect, The neurologist has ordered the transferring of Phoenix to another hospital with a pediatric neurologist more experienced with this level of spinal defect. They will perform the surgical procedure to cover the spinal opening probably tomorrow along with the fluid shunt. He looks good, in fact quite normal and healthy...we'll keep updating as we can. Thanks for all your prayers!
Here's link to new hospital:

Phoenix is here!

Phoenix arrived via c-section around 9:15, 4lbs 8oZ. He is doing well, surgery will be tonight or tomorrow. I am doing well, surrounded by AMazing friends and awesome hubby. We ARe going to get to see Phoenix in the next couple of hours, and know more details. Thank you for all your love support and prayers.
Friday, June 26, 2009

Pre-op fear and Good News, REALLY!!!

Yesterday, I had my pre-op visit, which i guess I did not mentally prepare for, because I was completely on the verge of tears most of the time. I guess it hit hard that I was undergoing this surgery, that has a ton of "possible" complications that are overwhelming !! In my mind the alternative birthing experience worked great and had way fewer complications, but that is just because i did not have to sign a waiver expressing all the statistics... anyway all that to say, I am at peace with this being the BEST way, though I would never chose it. Today after rest and refocusing that I get to meet Phoenix in a couple days, I am feeling much more at peace with the c-section and know that God is with me.

Today was my MRI that would help to confirm or disqualify the possible Holoproencephaly (HPE) diagnosis, which is a "non-viable with life" diagnosis. Our Dr. walked in with great news as she would say, this is one of the first times a Dr. has been able to say that to us, thus far in the journey. Phoenix does not have HPE and he they believe that it is just an extending result of Arnold-Chiari malformation which we knew about and she expressed to us that we should be encouraged because this rules out a lot of the fear of there being chromosomal anomalies, which means most of what is going on within Phoenix little body is treatable in some ways and that he may live a more "normal" life mentally that is. His mental capacity will not be known until later, but we do feel hopeful for that miracle as well.

We are thrilled at this report and are feeling hopeful and confident that we are going to see many more Miracles through Phoenix's life and the fight within him. I have been monitored this week to ensure that his heartbeat was well and that my fluid levels were good and all is well and a go for Monday. Some of our closest friends are coming in to town tomorrow and Sunday to be with us for the weekend and surgery and we are so thankful for all the love, prayers and encouragement from everyone that knows us, we can never understand all that God is doing but we appreciate and feel grateful for the Support we have received from all of you, I know we would not be able to do it without you.

Mike or I will update Monday, soon after my surgery and when we know a little bit more about Phoenix's first surgery and all his evaluations. Please continue to pray, as the days ahead are full of uncertainity and lots of hard decisions.

Love to you all
Friday, June 19, 2009

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!!!
Saturday, June 13, 2009

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!!!