Alone

Alone seems like a word we are all familar with, we all face this feeling, thought or attitude in our heart on many occasions. Whether it be a situation, emotion or just life in general. Some of us know it and its lingering memories so fierce that the faintest implication can bring back its many complexities. For example when Mike was in boot camp my best friend Dana's husband Nate was in boot camp as well. They were not together but both away, everyday Dana and I has survival tactics. They included loading our 1 1/2 yr. olds in the car and indulging some of Wisconsin's finest Luxury excursions. Mainly trips to Starbucks, drive-thru only, we would have to be insane to drag those to any further than the car most days because as much as we were feeling alone, they were in the same boat, yet had no understanding of it all. One of our normal escapades, was McDonald's Play place, which is only a luxury if you are a stay at home Mom with a winter stir crazy child, maybe not, but for most. All of this to say Dana took Olivia there last week and it awakened in her many emotions including aloneness that were rooted in her and I during that season. Olivia, however was more annoyed than anything that there were BIG sweaty kids there playing in her area and running her over.

My point is, this place is a hard and desperate place. An emotion I wish God kept hidden in some place far, far away. It is what I have felt and articulated to God in too many conversations. From the All day Dr. appointments, where I only feel judgement and the deep resolve that I am so Alone, to the everyday realities of living in a World that has no filter on their thoughts being daggers that no one has the right to articulate, all the way to the depth of misguided perception of ourselves.

There are too many stories to tell and example in all that I am saying. I am sure you can reminisce and pull quite a few experiences of your own. For the sake of understanding here's a quick one. One day I was at a store just wasting time between appointments and a Woman comes up to me and asks, "What did you do to your baby's foot?" Phoenix wears a cast on his Club foot to correct it. Of curse being so taken off guard at this implication (as I always am). I politely responded with, "my son was born with a Club foot and the cast is to help correct this". Though inside I wanted to scream and yell at her,"Who are you to insinuate that I am faulted in this and how dare you?" It didn't stop there however, she continued on with a story of one of her children being born with 6 fingers and having to have it surgically removed and assured me that He would be ok and never know the difference. Then again that emotion creeps in ALONE.

What I wanted to explain to her, if she had a moment to listen, was that the Club foot is just the beginning and that Phoenix had been thru multiple surgeries and that Our family has sacrificed hours of energy and Faith into this little boy and that this is the beginning of a long journey not a surgical removal of a 6th finger.

Now don't get me wrong, I appreciated her heart of trying to relate and encourage me, but our problem as people is we just don't always take time to listen or think about what we are about to say. Everyone has a Story and it is ALWAYS more deep and intertwined than what we see. I feel challenged in this daily, to stop and care for someone who is in need or merely reach out to those I am close too. I don't always have to Understand it, because it's their story not mine, but I should ALWAYS be there to listen, encourage and love them the best I can.

This is a middle line story I am telling, there are many more that left wounds deeper and brought tears on my way home from the interaction. The most current one was the situation with our apartment, it is too long to go into. But let me jut say this, Compassion and Understanding are lacking in our day and age and so many unbeautiful characteristics are the driving force behind buisness' and people.

So this is the nutshell version of these weeks and months with Phoenix and they all lead me deeper and deeper into myself, which always has me running into the arms of God. Because when I feel most understood, judged or Alone, I know that He is right there to walk with me through it all. To gently remind me that I am never Alone, that He is always there. The Truth is that we are not Alone in this life, there are many people who pray, love, encourage and support us daily. All of you who love us through it all. Each moment we face this place, aloneness is the moment where God is drawing us, to Him. To Know that He cares, understands and is ALWAYS there. Cause sometimes even with all the love an support we have surrounding us, no one else is walking through it physically beside me, besides him.

Know I am not wallowing in this place and I am annoyed that I will revisit it many more times in my life, as will you. But I come out stronger and more aware of the reality of what I am facing. I become more prepared to address the Thoughts that should not become words and the implications that I am doing anything less than the Best for my family. I am becoming graciously assertive. My desire is that through an interaction with me they will think deeper about what they are about to say and have more compassion before passing a judgement on others, as well as realizing that Our Story, your Story, their Story is not what it appears to be at first glance.

We are doing well and continuing to learn and Grow as a family. Phoenix is doing good, he's progressing and changing daily and we love him so much. Rowan is content an hilarious, he keeps talking about all the people he is going to see after he goes on the Airplane. Mike is doing Awesome in school and is soo looking forward to 2 weeks off. Jon got a new waiting job at a busier restaurant and is doing well. I am learning and growing and becoming. My heart is at peace with the pace we have to keep and this season of Craziness. We are moving when we com back on January 2nd to a 3 bedroom apartment, which is a huge answer to prayer.

Merry Christmas to you all, we love you and are grateful for your love and support in our lives.

UNKNOWN

I am not sure where to start, i have written this post about 10 times now in my head about all the challenges I have been facing and all the up and downs and in and outs of this life I live. It never makes it's way to the blog only stored in the file cabinet in my head. It has been one of the hardest few weeks i have had since Phoenix has been home. In so many ways I can not put into words all the emotions, what triggered it or where to begin. But after a Beautiful time with one of my dearest and deepest friends I see more clearly, maybe that is.



Because I don't even know where to start, I just don't start at all. It all brews within me, taking over my heart, my head, and my daily living. you know that feeking of being lost somewhere in it all. Three weeks ago we had Phoenix's MRI which was the beginning. He had to be intibated(put under with a tube down his throat) for my son to come off a machine and breathe on his own is unexplainably hard. That did not happen this time but has been our experience before. Add to this an Anesthelogist whom on both occassions we worked with him rubbed both Mike ans I the wrong way, not very helpful.

How can I put to words what happens in the time I wait for my baby to come out of surgery or any procedure in which I am waiting in a room. Irrational fears whisper. My whole being waits in this anticipation, everytime the waiting room phone rings I hope it is for us, or a Dr. walks in I pray it is ours. What surfaces in these hours is the memories of Evan our first born, the time when the Dr. told us he had a fatal birth defect to the day he was born not to Earth but only to Death. You see that is our only experience with Children and Birth defects. Every time we wonder are we gonna have to be the parents who are told the Horrible news?? I don't live in this place, I only visit it while waiting for the UNKNOWN.

Truly it is there that anxiety can have its way anyways, for all of us. We can get lost in previous experience or in our minds lurking fears. It is these times that again and again I have to entrust my life and Phoenix's and all the plans for us as a family, to God. He is the only place I know Peace in.

The Mri ripped into depths of me in new ways. It was the beginning of seeing what was lying in the crevices of my heart, questions, fears, doubts and FAITH. In these moments I am overwhelmed that while most children and their families will maybe experience one MRI, Surgery or major medical intervention, or situation where we are completely at the hand of someone else. But Phoenix this is what his and our life will consist of. Not to be dramatic, but truly, we are only on month four of his life. This is when the tears come and the realization that what was once "normal" no longer exists.

Now if you know us, you will know that my life, our families life has never been "normal" and most days I am ok or really appreciate that. But in those moments all I want is for my baby, for him to be able to have it all in the way we see "it all".

These times take me hours, days, sometimes weeks to unravel. What I am feeling, what i need to SEE and who and where GOd is in the midst of it all. Not that God ever changes, but His heart is that we know him in all these times hard and easy, know who he is and what he desires us to grab a hold of. That is where and when my Faith stands Strong on God.

Here I am three weeks later, to report that I have faced many more obstacles of my mind. The ones that come in the form of self-pity, comparison and feelings of failure. In this moment as I write and just coming out of a great time with one of my dearest friends, I realize that so much of what we give our thoughts over to is not the TRUTH.

Because most would look at my life and say I am doing a great job, but I would look at the day to day of my life and think I am lacking. My house is a mess, my son watches too much T.v., I am never on top of the weekly to do list and... Well let me just say.... I never feel ahead. I know all this is not the TRUTH. Because if any one of my friends was living in these thoughts or feeling this overwhelmed, I would tell them that what matters, what really matters is, LOVE.

Loving your husband, children, friends and family. My Mom taught me that one. The day to day is always there and we are our own worst critics. My life is not measured by my accomplishments of cleaning, but by where I invested my time, heart and love. That I can say with all my heart is in God and those I love, at this time mainly my family.

So all of this to say, here is a little window into all that I am processing through and how it can take me a LOOOOONG time to come back to the simplest Truth. Thanks for listening and caring and I hope you receive God's grace thru it all.

The GREATEST news is that Phoenix's Optical Nerves are NOT premature, so now we meet with the Opthamologist on Dec. 1st for his recommendations, whether it be therapy and glasses or what??? This is a Miracle and answer to prayer, I know that with all my heart. He is doing well, the greatest determent to him at this point is how well and how far or near he can see, hopefully we will get answers. Otherwise his Plastic Surgeoun is thrilled with his back and the Neurosurgeoun reported that all is well with his shunt. So he is growing and developing daily and a ccomplete JOY to have.

Rowan is Hilarious, everyday he says new things and they have us rolling in laughter. He does this new thing, when he gets his feelings hurt. He'll walk over to a corner and put his head down and lip out and pout, it really is adorable and his way of communicating with us. I love who he is becoming daily and enjoy our times together.

Currently, we are looking for a house to rent, we have outgrown a 2 bedroom apartment and are hoping to move into a house after Christmas for the remaining 7 months we are here. So please pray for that, it is really challenging to find a house in a neighborhood that is close to Ft. Sam and the hospitals, within our price range. I know that God has something in store and maybe it is to just stay put, either way we appreciate your prayers for all the details.

Thank you for all your love, encouragement and prayers. WE love and feel honired to have each and everyone of you with us in this journey of Faith and fighting.

Everyday, Every Moment Miracles...

My Aunt Tricia gave me this onesie for Phoenix, it is my most favorite to date. It reads MIRACLE on the front and has angel wings buttoned on the back. As I was spending time with a dear friend of mine this weekend in the thickness of conversation about all the hard trials we face in life. I would look over at this onesie and think about all the Miracles we do get to see and how sometimes they are just right there in our face and we take them for granted daily. How my heart can ache so deeply with a friends, how my son who along with so many other complications had legs that were stuck straight out with no ability to even be bent, now bend and have layers of chubbiness, how my husband is my best friend and greatest advocate of my dreams in this life, how Rowan changes and loves more deeply daily, how my brother in law stopped his life to help us and be apart of this journey, how so many love and fight and believe with us for all our dreams, and .... So much more, I could just keep going.

But my point is for you to stop and think and thank God for all the day to day miracles you over look and to appreciate the trials as gifts that inspire us to love deeper and judge less. Judging less is the greatest mountain to climb I feel, but I feel so amazed when I am able to do that and the beauty of embracing a person where they are, as they are is exactly how Jesus lived daily. Been thinking about all the judgements, maybe just in my heart that I pass and that I feel passed, how hurtful they are and how I have no right, because if I really knew the depths of what they are facing i would find myself crying with them rather than judging them. Being able to be the Miracle that they need that day, maybe just the miracle of kindness. Simple but beautiful!!

We had a good week and a GREAT weekend with my friend Katie and her daughter Kayla, Rowan and her hit it off instantly and really enjoyed there time together. Katie is one of my dearest friends from Cosmetology School, we became friends the first week of school. Pretty much were inseperable for the rest of our year. She is one of the kindest, most sincere and generous in giving of herself that I have known and I feel blown away by her continually. So glad that she came and we were able to have a chunk of time doing life together, it was too quick, but so refreshing.

Phoenix did not have his Mri or Opthamologist appointment as he was congested and had a cold. He has to be sedated for the Mri so they rescheduled for November 2nd. That was a relief to me. This week we have follow-up with plastic surgeoun, neurosurgeoun, and physical therapy. Mike is doing great in school, he has 92% average and really is enjoying it. We went out with some of his fellow classmates on friday night to celebrate a big test being over. It was really great for us to have people to connect with. Rowan is growing up everyday and he is funnier every sentence, I am so in love with all that he is becoming. Finally me, while I guess the first two paragraphs sum up me, but I am doing well and learning daily about the beauty and fight of life and Love that God walks beside me in it all.

Love to you all and i count each one of you a Miracle in our lives, thank you.

One little life= IMPACTING

Just returned to Texas on Wednesday, Chicago was a much needed time of encouragement, love and blessing on so many levels. Though I am thankful for our season here, with very little on our plate outside of the day to day Dr. appointments and family. I realized what a difference family and friends make, and left me longing for HOME.

We did not STOP while we were home, but every minute and every conversation brought life to my heart. I realized to some extent the impact Phoenix' life has had and it was so eye opening to watch and hear as people told me what his little life has changed in their lives, and those were the ones that could put words to his impact. There were so many who could not but I knew they have been changed. Everytime I was moved deeply and found myself thanking God for all that he was and is doing through our family's life.

You see sometimes when we walk through hard things or make a hard decision we have no idea the ripple affect of that one trial. We sometimes are blessed enough to get a glimpse and it is then that we are blown away, let me say, "I am BLOWN AWAY." Friends of mine from growing up hosted a Benefit for our family and it was a HIT, they raised money to help us care for Phoenix and his road ahead and it ahs lifted a huge burden. So many people I haven't seen in years came to support us and love us and so many friends came together to plan it all and make it a success. We are loved and love that everyone Celebrates and Fight for his life with us.

Rowan needed this trip as well and his very demeanor is Full of life and joy again, I love that!! Even though he returned home with a cold, he is more content and growing up so quickly. Mike loved seeing his friends and meet some of mine. Phoenix was a doll the whole time, he's such a easy baby.

Well that is what has filling my heart and THANK YOU to all of you that are walking this road with us and for all your help through prayer, finances and friendship. We could not do it without you all.

This coming Monday is Phoenix MRI for his eyes, please pray as they will have to sedate him and that is so hard for me. As well we are HOPING and Praying for a miracle with his optic nerves. They are saying that they did not develop while he was in utero. I know that many of you are in agreement that Phoenix will be able to see and I know that it will take a Miracle, since currently that is not the case. I have seen improvement on his focusing since our trip home, many prayed for him. We are hoping for only more and more.

Emotional days...

Summing up the last 10 or so days, the details of Phoenix's issues are too complex and even if I launch into them it is nearly impossible to understand the magnitude of it. That is ok, I understand that this would/ has been the same for me in similar situations for people I love, watching them walk through complex medical issues. It jsut gets difficult at times to never have answers you really want and desperately need.



But the Truth is life is full of unknowns for all of us and we need to focus on the knowns and do our best to Trust God with the unknowns. It has been a challenging time, I have just come out of an emotional few days and every little thing, set back would break me into a sobbing mess. I can't explain it, which is probably the hardest part. Not knowing all that I am feeling, but feeling it immensely is hard for me.



In a nut shell Phoenix back was flaring up and we got a hard report from the ophthamologist. Phoenix's optical nerves are premature, that means they will not mature, so we know that he see's, just not how well. Since they didn't develop correctly, outside a miracle, these nerves will only continue to deteriorate. These are moments when I feel the most blindsided and heartbroken for him, not only will he already not have a normal life, of walking and running and all the many many life passions that are associated with this, but he will always have issues with his spine and now his eyes. As a Mother, I feel like I can handle a lot, but these things sometimes just knock the wind out of me and I feel broken for him. Then I come back to the question of what will normal look like for him and what if our definition of normal is wrong?



God knit him together just as he is and I don't believe he makes mistakes, so he must have so much to teach me through his life. Already I have seen and understood so much, and this journey has only begun. It is lifelong for us as a family, you as my friends and for strangers as onlookers. Amazing that one life can affect so many others with such magnitude. It is these truths that I have to find rest in or the road is too challenging to walk.



I am feeling better these last few days and the emotions that I was so intensely feeling have passed, yet the heartache as I write remains. I continue to ask, seek and knock, hoping that I can continue to see God in each of these times and know what he is saying and doing.



Mike is doing great in school, and we as a family are falling into a groove for the most part. Rowan has the hardest time with my 5 appointment weeks, which I understand, because they are hard on me as well. He is growing so much in his vocabulary and adorableness, we are enjoying him. We are looking forward to the Fighting For Phoenix benefit that my friends in Chicago have been planning, it is only less than 2 weeks away. Mike is thrilled that he gets to see all of his friends as he has not seen many of them for 10 months now. I am thrilled to see everyone, celebrate Phoenix, watch Rowan and Olivia see eachother again, and have a break from specialist appointments.



Love to you all and thank you for staying a part of our lives.your love and prayers give us strength daily.

Triumphant

Since last time, we had an intense couple of weeks. 5 appointments 2 weeks ago and 5 new specialists added to our life. I was tightly wond that week between the mess of our house, appointments, Rowan's melt down's and the anticipation/fear and many emotions with Mike returning to school.These times are revealing , about how and what I turn to in stress filled times. I wish that it was God more and outward controls less, but we are always learning and growing aren't we??? Needlesss to say come to the end of the weekend, our house was in order, Rowan was/ is more adjusted, he staerted to request to hold his baby brother, appointments were full of purpose and I was beginning to feel encouraged and ready for the week ahead. Thank God for Labor day =)

Phoenix had his first Dr. appointment at the military hospital, since we've been using the hospital that he was transferred to after birth. OVERWHELMING, but super helpful and efficient use of three and a half hours. Basically we met with a head Dr. who overlooks all his care and all his needs and he connects us with the right specialists and gets the appointments set up. So in addition to our Neurosurgeoun, Plastic surgeoun, Occupational therapist and physical therapists, is a neonatologist (oversees hois development beyond a peditrician's care, looking for all the problems related to Phoenix's diagnosis and the fact that he was a preemie), Opthamologist ( children with Mylemogincele tend to have issues with their eyes), Genecist (which we already saw and cleared him of any genetic/ chromosomal issues, thank God!!!), Peditrician, Urologist (they are re-evaluating Phoenix beginning to be catheridized, he has developed a kidney infection, which is a sign of him needing help draining his bladder sooner than his body is naturally)and a pediatric orthopedic ( to over see his progression of his feet and hips.

Phoenix encourages me daily at these appointments, he is so content and flexible. Making it so much easier and peace filled for me. We also had an ultra sound on his kidneys and hips two weeks ago, which is how they found out about the kidney infection. No news on whether his hips are still bilaterally dislocated still or not, the orthopedic doctor will go over that with me.

This past week was surprisingly great, it was the first week of me being a full time Momma without the stress of Mike being gone (boot camp) and me being pregnant. Let me say I LOVE being a Momma. It has been FULL of the Grace of God, I know that. And I am amazed at the fruti of all the prayers invested in our family. I have been able to enjoy the boys and feel on top of the house, which is a miracle for me, seriously. Pregnancy took a toll on me being the best me and once again I am left soooooo thankful for Grace and God's timing being perfect. I feared this past week and realized that we often fear the new seasons of life, but God is never too eartly or late when he releases a fresh ability to walk that new season out Triumphantly. I feel so triumphant and I love it. The challenges that I am facing on a daily basis become more a part of my life and less a stressful mountain to climb.

Rowan and I played in the rain, three days in a row and he loves it, so do I. Also I found an Elmo doll at a rummage sale and that is his new best friend, he treats him like Phoenix, laying him doen and covering him up as we do with phoenix and feeding him a bottle and snuggling with him, it's so endearing. He is a joy. These are the pictures I included.

In the moments this week that have felt like i just can't do it, I step back and ask for help. Help always comes, whether it is just a change in my selfish thinking or a readjustment of my heart, to remembering that Mothering and taking care of a home is a gift. Challenging as it is, I can still find joy and triump in every day if I chose to. My fondest memories of childhood were just being at home with my brothers and My mom being there, playing with us and overseeing life with us. Just the simple day to day that I can get so bogged down by, relationship is always the priority, not busyness. I want my kids to feel that way when they look back on their childhoods.

Love to you all and thank you for journeying with us in love, prayers and encouragement. It is an immeasurable gift to us.

If you are interested in coming to the benefit for Phoenix or would like to donate, here is the link with all the information. We will be there, which we are sooo excited about.

http://fightingforphoenix.giving.officelive.com/

Life and LOVE, fitting them together...

Last week went by too FAST as they all do, and left me wondering how on earth me and the boys are gonna do the day to day without Mike around all day. We had five appointments this past week, all which were good reports but put a huge strain on Rowan and my relationship. He is having a hard time adjusting to all the changes that come with a new baby and one that requires so much of his Momma. We are experiencing multiple emotional meltdowns and covet your prayers, I find myself grasping for some Wisdom during all these outbursts and wonder how to meet his needs and still "do" all there is to "do".

Mike's parents were in town and they were great to be with and so helpful. Mike and I got much needed time together and attempted to gear up for this last week before he returns on Tuesday the 8th. Deep Breath, I do not know how it will all pan out, but I know the Grace of God covers me every moment of every day. That is Amazing!!!!

Phoenix's appointments went well, the biggest one was with the plastic surgeoun and much to my joy, we no longer have to bandage his back, fully closed and healed over. He still can not be on his back because of the risk of the bone breaking down the skin and coming through, which will always be a risk that we will have to monitor. We are working with our awesome Physical Therapist to figure out the right pillows and donuts to support him. Our boppy is working to prop him out without putting pressure on it for now. His feet are responding well to Physical therapy, I only have to tape and splint his right foot at night and his left (his club foot) is slowly progressing. And his shunt looks good, he'll have a head ultrasound in 3 weeks to confirm all the excess fluid is still draining correctly and their is no infection. He is slowly becoming a better sleeper, but I am amazed with how much he faces everyday and how well he does it, such a sweet and strong disposition.

This past week left me feeling overwhelmed and grasping for control by planning. That works for
people, but it always seems to be the unreachable for me, causing more stress in my heart and mind. God knows me sooo well and amidst all this I kept being reminded in my heart to take it one day at time and sometimes, one moment at a time. On sunday we were reminded by our Pastor, that life's one priority is LOVE and if we are living in love. Loving God first is our number one priority and everyone and everything else will be an overflow of that love. It seems too easy but it is sooo easy to get caught up in so many other "priorities" which only cause me stress. So taking a step back and focusing on what is important in this life one day at a time, LOVE.


Thank you for all your prayers, love and encouragement. We feel it everyday and thrive because of it.

I wonder so many times a day, how Mom's do this. So many of my friends have multiple children and a lot of them make it look easy most days that is. Here it is one crazy moment after another and most days I am amazed that the day is over. Today. I feel like I can't believe it, this is our life, FULL to the top with LIFE, that most days, doesn't even make sense. If you asked me what I accomplished with my day my answer would be a dumbstruck and exhausted stare, somewhere between a 2yr. old, sleepless night infant and dinner, I think I accomplished reading a book to Rowan maybe put a dish or two in the dishwasher. I know, I know, it slows down, OK maybe not it at least starts to find a rhythm, that works within your house. I constantly find myself reaching for that, and know that it is just around the corner in so many ways.
I mean already in just this last week i have become so much less intimidated by Phoenix's wound and his Physical therapy and 2 trips to the hospital with him has become minimal and ordinary. That is a gift. So many gifts daily are poured out on us and I am sooo thankful for that. This week we met many new people from our church they have begun bringing us meals which I am so amazed by this kindness. We met with our friends Mel and Wendy at the Church's coffee shop and met so many others, it was great to hear them say they are reading about our lives and praying for us. Astounded that our life has become something to read....Then I am brought to the bigger picture of Raising boys to become great men and this plan that God has interwoven so intricately to make it a Great Story full of His Character. He amazes me, with his grace, strength and view of this life we live. I am taken back that he chose us and that really it has only begun for us. Phoenix is only 7 weeks old and Rowan two and there are UN named children of ours and unseen paths for us. Embracing this day is what I must always find my place in, this one day and these fast FULL days.
Ok, enough of my tangents, on to the updates. Rowan had a rollercoaster of a week as most 2 yr. olds do, we are learning how to help him through all the transitions. He is doing great for the most part and like every child consistency and schedule are everything to him, security that is. I lack in those areas and am thankful for Mike's touch and the Grace of God.He is adorable and so endearing that even in a moment you can forget the nightmare of a scene he caused moments ago. It goes without saying that Mike and I are learning to not allow ourselves to fray under staring eyes in public places.
Phoenix is healing well and hopefully this week will be the undoing of Wound covering, it looks great and has healed well. I don't know what that will mean, if he'll still be unable to be on his back or if there will be set amount of times he'll be allowed to lay on it. We got a great stroller this week that has a bassinet so he can lay down on his tummy or side in it and I can be hands free for appointments, which is a gift in every length of the word. He sleeps like a newborn and does not believe night is for bed time. Our weeks consist of 2-4 trips to the different doctors and Physical Therapy. We are only currently seeing 3 or the 6 Doctors he'll be dealing with on a regular basis because some we have to switch over to military doctors for insurance reasons. This week at Physical therapy I learned how to tape his right foot to help reshape, and reposition it. I am learning to fit his exercises on his feet into our day to day. Great progress has already happened in these weeks and we are hoping and praying that will continue to avoid surgery.His shunt is doing well and this week we will meet with the Neurosurgeon again to look him over. We also will start Occupational therapy, which will help with his development, and give me at home exercises to do to help loosen his upper body, he tends to overcompensate because of not using his legs. His demeanor is sweet and strong and I am enjoying his intense stares and chubbiness. He is a doll, such a sweet and strong spirit.
Mike and I are not looking forward to his return to school in a couple of weeks, but know that it is worth it and will be great for us. We are doing well, looking forward to a much needed date night this week, his brother will be back from vacation and Mike's Mom and Dad are in town, so maybe we'll get more than one. YAY!

That's it. Love to you all and thank you for all your love, prayers and support.

Phoenix is home!!!

It has been way too long again, sitting at Starbucks on my break time, before picking up dinner. I compose my blog entries in my head and then when I get the free moment, my fingers are off and racing. Phoenix came home last week on Thursday, it has been Wonderful, complicated, revealing and stressful in moments. It’s crazy to me how I forgot what it’s like to have a newborn and how quickly all that I thought I would naturally love to do, becomes overwhelming. I mean the simple things like holding and nursing, seem all consuming. Rowan was an intense and needy baby and Phoenix’ demeanor is much more content. But like all premature/ sick babies who spend time at the hospital, they are desperate for physical touch and time with their parents, as we were to be able to give that to him. It is however an adjustment, I guess I was thinking that life would be somewhat normal when I was done being pregnant , with Mike and got to bring Phoenix home, but instead I have felt all those “new MOM” emotions and thoughts of failing at this hard and beautiful work of Motherhood. Phoenix is all new in so many ways, and keeping up with the demands of his day to day are an insecure place to me. Yet I remind myself and know God has given me the strength, grace and hand picked Mike and I for this journey, which still perplexes me. SOOOOOO all that to say, I am learning all over again and asking God to teach me how to do it all.
Today, we had follow up appointments with Dr. Wang (plastic surgeoun) and Dr. Gennusso (neurosurgeoun). Mike and Rowan came with for the sake of helping me with paper work and support. Thank God they did. Phoenix doesn’t have a carseat ( he has a special car bed, which he lays on his side on in the car) and because of his fresh wound he can’t be in a carrier/ sling, so no free arms for me. AHHH, all the many luxuries I took for granted with Rowan. Therefore Mike had to fill out all the initial paperwork.
Good news from both visits , his shunt looks good, no more signs of leakage and it seems to be draining correctly, they removed the stitches from that. His Skin grapht is healing well, there is one area, that Dr. Wang is concerned with, but he said it will heal “eventually”. Let’s pray for speedy healing, little miracles in the day to day. Phoenix dressing/ bandage on his back has to be changed multiple times a day, because it is close to his bum and because he has no bum muscle, flat bottom, the poop tends to come up his back and get on the dressing, so with every few diaper changes we have to redo that, which honestly is a headache. Can’t wait to be done with that, about 2 more weeks, HOPEFULLY!!! Tomorrow is our first out patient physical therapy session, he has outgrown his soft casts in a week, he loves to eat and is growing amazingly well. He gained 10 oz. since last week. You can all pray that I continue to feel more confident in the exercises and eventually the taping of his little feet, that is intimidating to me. I love our Physical therapist though.
We found a church that we feel a part of, thank God. We’ve only been a couple of times but already many people have come around us and they will be bringing us meals which is incredible, because we are really out of the way. Our friends Wendy and Mel that we met at the NICU have been so fantastic at encouraging us and connecting people within the church to us. Hopefully will return in another couple weeks. Currently we are on “house arrest” because Phoenix risk of infection is still high until his back is fully healed. That is hard for the Reuwer family personality as we love to be out and about and socialize, however trying to enjoy it and Mike gets out in the morning with Ro and I get out alone in the late afternoon, good time to call if anyone wants to chat.

All and all we feel that God’s timing could not be more perfect for us, we have three more weeks till Mike returns to school and he has only had to go in the mornings for exercise and then returns home for so shut eye before he gets up with Ro. He has been so great, feeling the stress of balancing it all, but we are learning together to not take eachothers roles for granted. Why do we have to relearn these same things over and over again, like a child I swear. Jon is on a much deserved vacation, boy do we miss him, how we would do this life without him I am not sure. He is such a great brother, uncle and friend. We are so thankful again and again for all the support, prayers and love that is covering and carrying us through. Thank you friends and family, we are richly blessed. My heart is full of gratefulness and strengthened by each one of you.

On a closing note, friends and family of mine from home (Chicago) are having a benefit for Phoenix to help cover all the overflow and future costs of surgery and care for him, (So AMAZING!!!) . You can read more about it as well if you would like to attend or become involved in any way, I know they are doing raffle tickets and looking for raffle gift donations.

Here’s the link:
http://fightingforphoenix.giving.officelive.com

Phoenix is coming HOME!!!!!

This week has been yet another whirlwind, and as I was getting to my end, we heard the fantastic news this Monday that if the wound on his back looked good he could come home as soon as Thursday!!! I pretty much wanted to start bawling right then, but there was no time for that and the timing was pendding on multiple doctors approval. The Plastic Surgeons approval being the top priority. He came Early evening monday and gave the thumbs up saying the skin graph looked good and that we could go home with the approval of the Neonatologist Dr. Ortiz and the NeuroSurgeoun Dr. Ginnusso, both of which were more than excited to say yes. Everyone is amazed at how well he is doing and that the wound is healing. Also, the fact that he has had no breathing issues outside of bottle feeds, which is normal, we know that it is a MIRACLE, thanks to all your prayers.

These last three days have been preparation time at the hospital and home, it is full of a flood of emotions from elation to overwhelming. We have learned everything from Wound care/ dressing to physical therapy and have had to set appointments and figure out insurance and home health care and the list goes on and on. No complaints though because he is sooooooo worth it!!! Thankfully we have the help of professionals. All our amazing nurses and doctors and Pam our personal hospital liason. Know how it works is pending the trial ovenight (tonight) at the hospital (they have hotel like rooms I'll stay in with Phoenix)if all goes well, no breathing issues or anything else, then tomorrow we are discharged. So Amazing, I can't even believe how crazy excited I am, who looks forward to all night nursing and sleepless and all the challenges that come packaged with a newborn, perspective sure changes with trial. I sure am looking forward to all of these things. The day to day is a bit intimidating but we will have a home health nurse coming three days a week for the next 2 weeks, which will be helpful with any questions, complications or fears we face.

On a daily basis we will have to do wound care for his back and Shunt in his head, watching for infection and ensuring that he is not on his back at all. Physical therapy on his feet and knees at all diaper changes, which I know will become second nature over time, a little intimidating right now. As well as paying attention to his breathing and administering meds and the likes. Seems less overwhelming when typing it out, but it is a lot of attention to him and all the signs of possible "issues".I will also do physical therapy 3 times a week and follow up appointment with specialists every week or so. All of that to say, continue to pray for the grace to care for our little man.

Mike and I are continuing to balance eachother out and learning to encourage and strengthen one another in this new season. He is home for four more weeks which is the amazing provision of God, his timing is always perfect. I am thrilled to get to be a Momma at home and to learn all that is to come to care for him and Rowan. Rowan is getting excited as we have set things up for Phoenix, we've explained that he has ouwies and that we have to be very gentle and he said he wants to hug and kiss him. SOOOO cute, I am looking forward to there first meeting, I know after the initial adjusting they will have a very special bond. We went out to dinner last night and there was two brothers sitting next to us the younger one was mentally slow and the older brother handled him so well and lovingly, not even noticing that so many were effected by his love. I felt like it was a gift and picture of the dynamic of Ro and Phoenix together, even though Phoenix's handicap is physical and not mental.

Thank you all for your prayers, love and support we are amazed and thanful for your continual walking with us in this journe, we love you all. I will write again when we are home.

HOPE, it is good for my heart, challenging for my head!!!

I know this update is later than most, but I have been waiting for things to steady out a bit. Last week was FULL of it's ups and downs and my heart clung to Hope, but my head was uncertain of what to hold to, it questioned so much of this process and resigned to a less abundant place. Not Hope, but uncertainity. God as always showed up in my life and realigned TRUTH in there. God never fails to amaze and provide and I want to thank all of my friends and family that have been an extension of that in providing financially this last week for us, thank you!!! To all of our friends and family that are praying and continuing to walk this road with us, thank you for your faithful and fervent love. Hope comes in these times because of all of you!!!

Let me begin with updating you on Mike and flow down the list, Mike had to return last week, just in the mornings, but we were uncertain what they were going to expect of him. His Sergeant has shown great favor on him and has just as of today allowed him to only come for the morning exercise and call to check in twice a day, which is AMAZINGLY kind of her. He will hopefully be able to begin school agin in September and finish around September of next year, this is all pending on the length of Phoenix's recovery. He is able to be here with me and right now we are able to go to the hospital once a day together. He is handling life well, he misses his friends and home. He is Superman I swear, he does a great job of balancing all that is on his plate. I am so thankful for his love, friendship and strength in my life.

Jon is still living with us and was working 40 hours a week while my Mom was here and is preparing for a two week vacation with some great friends, he deserves it, he has been such a blessing to us. Mike and I are constantly amazed by his love and ability to care for Rowan and help us through this season with all his serving, what a treasure he is to us as a family. Good old uncle Jon!!!

Rowan is a super star, last week was one of his hardest, we are breaking him of some temper tantrums and learning to move into a new stage of redirection and firmness with him. Even in his hard moments he is a complete JOY and gift to us. We feel so thankful and honored that God entrusted such a strong and compassionate little boy to us and amazed at how much he grows daily.He loves book, wiggles, the pool, granny time (he would wake her up every morning around 8 to hang out), he doesn't wake up for us until 930 or 10, hanging with his papa and uncle Jon, the park, five guys french fries only, we haven't recruited his taste buds to cheeseburgers yet =)and procrastinating bedtime by asking to snuggle ("which we love as much as him).

As for me, I am doing one day at a time, these days all run together. Between 2 trips a day to the hospital and planning my day around pumping and phoenix's feeding times,dr.'s bedside appointments and time for Rowan and Mike, the days fly by. My Mom left on Monday, having her was wonderful and seemed unnatural to say goodbye, as if she was meant to be here forever. It was hard for both of us to say goodbye and we miss her deeply already,she is such an amazing, grannie, friend, housekeeper and shield of hope and faith for us. That has meant trips alone at night to the hospital which has been fine for now, just a new experience, as for the last three weeks her or mike have been with me for each trip.

A couple weeks back we met another couple here at the hospital whose baby was in the NICU as well, and they have quickly become astrong part of our life and a gift from God. Their names are Mel and Wendy, they have been a rich blessing to us and we have become fast friends with them, the type that you feel you've known all your life. They introduced us to their church and we love it, met with the pastor this week he came to the hospital to meet and pray for Phoenix and we spent a couple hours together, he is a strong,passionate and encouraging mand and we feel so thankful to have found a place among these people, the timing of God is perfect for us, eventhough it doesn't look it all the time. I am thankful that slowly life seems to be taking a more consistent shape,I find myself grasping for control or some semblance of a normal life and then again come back to a place of relinquishing control and TRUSTING and HOPING in God alone and his plan. His Plans look nothing like mine would and so it takes looking to him and not at these circumstances to stand daily and face it all.

Phoenix, as I write this is in surgery, hopefully this will be the last one for a few months. It is to cover over the opening in his back, a skin graphing, though it is an easier surgery than the last it has been so heartwrenching for me. I love and ache for him more and more each day, it seems so impossible all that he has to face in this life, but I am so thankful that he is here and we will walk beside him through it all. Knowing and clinging to all these roads having great purpose in all that his life is about and the strength it will bring to us as a family. He is so strong and beautiful, I have learned so much from his little life already. I find myself praying for specific issues, that I would never think about with a healthy baby. Phoenix little knees were locked when born since he has no use of his legs, they have loosened with phyical therapy, but the are still straight and stiff and we so desire for them to have movement and bend with time, so that he can sit like a regular child. Also, his hips are dislocated and they as well have loosened but the surgery to help with this has little to no lasting results because he can't use them, so they tend to return to the dislocated position, please pray that we would see change and progress here, they believe there is little to no pain for him in his hips, which seriously is my saving grace. Physical therapists and DR.s do continue to say what great progress he is making and that they are impressed with his great disposition and strength through it all. Our Little Trooper!!!

We have been told at this point in best case scenario, if all goes well, Phoenix culd come home with us as early as 2 weeks from now. We have learned not to cling to these things since everyday it can change. Two major areas that would prolong the process is infection and /or his breathing issues, they are hoping they will resolve themselves with time and him being moved from the "special bed" he is currently in. Last week his shunt, in his head sprung a little leak and they restiched it and are hoping that all was resealed with that. On Mondays he has a head ulrtrasound and many other labs and everything looked great, that was so encouraging after a hard weekend.

Alright that is all for now. Love to you all and thank you for all your love, support, prayers and encouragement, we could not make it through this without you all by our side.

Ups and Downs, Life as a parent, friend and everyother Role I play

This past week has been full of Bad news, then some good news.Phoenix had many downs, for about four days straight, breathing episodes, wound on his back not healing, they had to scrape skin away,and a blood transfusion. On the side of life, our house is up in the air and sorting through the day to day finances, schedule and life of a baby with special needs is intense.

Good news came, and we are still waiting for more, miracles please. Friends of mine in Chicago are having a benefit for us to help cover costs that we are unable to cover, amazingly kind and generous!!! As well as Phoenix's back was looking better later this past week, his breathing is sorting itself out, hopefully without surgery and continual oxygen. He is an absolute favorite in the NICU, every nurse that works with him loves his disposition, he is sweet and so content. He loves people though, he will not sleep if we are there, because he wants to be with us. The Doctor gave orders so that I could nurse 2x a day which has been such a great time of bonding and really good for him to learn how to breath and pace himself while eating, he is a little chugger. He has less wires, so it is getting a little easier and though the beeping is obnoxious we are learning to tune it out. We still have at least 4 more weeks to go.

We made new friends at the NICU support night whom invited us to their church, which we really loved. Enjoyed lunch with them on Sunday and it is so nice to be an encouragement to others going through difficult times, we feel reminded of God's faithfulness and love for us and others.

My eyes have been openend to sooo many things and I feel aware that there is always room for change in me.I felt aware of my lack as a friend to many of my closest friends, that have faced really tough times, I felt challenged to grow and become more consistent in loving and practically caring for them. Mike and I have been amazed and disappointed in the love and generosity we have seen, felt and known in these weeks and months. We are amazed at the sincerity of all your prayers and encouragement as well of the many ways you have helped with the practical day to day needs. I know that God has and is caring for us and walking through this journey with us and though each day holds it's share of mountains, Phoenix is teaching me so much of remaining content through it all. Incredible that a little baby can teach me and change me so much.

I have been reminded again and again of the miracle that he is, here with us and I look forward to all that is to come, thank you for staying with us and loving and supporting us on so many levels, we love and cherish you all.

Hard Road

Today is two weeks since Phoenix is born and it seems much longer in so many ways. This road has been rough the last few days, I have a hard time saying that out loud and even allowing myself to think it, because essentially there is so much to be thankful for. I am discovering however good and right it is for us to just allow ourselves to feel and say this is HARD!!! Life is hard, in different seasons, days or hours and we each have our way of dealing with it, I think I rise to the occasion and deal, but when it all hits me, then I just have a nice break down, and can usually bounce back shortly after.

This break down came after feeling so frustrated with the realities of my baby in the NICU. Everyday you hold your newborn multiple times a day to feed,comfort, cuddle or just get things done. Well holding Phoenix includes a 10 minute process of untangling his 20+ cords while finding the best placement for him in my arms so that none of his vitals dip and I am not interfering with oxygen or his wound and so many other things. While attempting to bottle feed, which Phoenix loves to chug so he forgets to breath, nurses try to offer suggestions and help, but every nurse says something different. All the while machines are beeping at you and I feel like a new and insecure, massively insecure Mom all over again, just wanting to scream let me just be a Mom and hold and love my baby. On top of this there have been some issues with Phoenix's breathing, he has been stopping and has to be manually reminded to breathe,scary to see, which may be related to his Chiardi diagnosis, I am awaiting a phone call from the Neurologist.

So after my cry session, I am refocusing on all the benefits of the NICU for Phoenix and us, it has given us time to adjust and learn more about the day to day of caring for him. Which will include many new things that I did not have to do with Rowan, such as physical theray, wound care, catheterising, and other day to day realities. These daily become less overwhelming and more of a reality to me, and he still has a long road ahead, as do we, full of growing and learning. Most of all the level of care here is AMAZING, each nurse loves and cares for Phoenix like we would and I feel able to leave every night fully trusting them, which is a gift from God. Above all else Phoenix is here against all odds and fighting for his life and healing from his first surgery. He is beautiful and sweet, content as can be even with all these machines and different peole caring for him. I am thankful for this MIRACLE and for all of your prayers support and friendship, as I know we would haave way more of these moments without all of this love and prayers.

My Mom has been here and enjoying her every moment of Grannie time with both Rowan and Phoenix, she is an ANGEl, she accomplishes so much in a day that I can't even begin to keep up. I am amazed and so thankful for her love, time and friendship in my life, it is a great strength and gift to me.

Quick update!!!

Just wanted to update and post some pics quick. Life is one day at a time, and if we look or think to far in afvance then it is completely overwhelming. We are in need of your continued prayers as each day gets harder for me to leave my baby boy. There are sooo many emotions, I can not even begin to express the depths or width of. But please don't take this life for granted, the ability to walk, sit and live without assistance, that is a gift from God!!

My brother John was in from Montana, and the NICU has some really strict rules when it comes to visitors. Parents and Grandparents only, so we had Phoenix baptised to allow John and Jon (my brother in law) the chance to meet Phoenix in person. It was actually great and we are thankful that there is a little loop hole. Phoenix was wide awake and content.

Monday, was a big day, BUSY for him. A ton of doctors looking him over and doing things to his little body. I got to hold him for the first time and that was wonderful and I am able to hold him daily, but it is exhausting for him so i am trying not to overwhelm him. He is doing great all the nurses and Doctors call him a Trooper, which he amazes me. Everyday is a little progress and we are hoping and praying for continually more. I spoke with his Neurosurgeon and the Plastic Surgeon yesterday and they are estimating in about four more weeks he'll undergo a skin graphing surgery and then we will still have a long haul in the NICU after that. It seems so long until I get to have him near me and my heart aches that he has to go through all that he does. I pray every morning for the Grace for that day and to just walk one step at a time and enjoy every precious moment, I am so thankful that he is here.

We need your prayers, there are many decisions up ahead for us and we are financially praying for God's provision. Everyday there are costs involved that we didn't anticipate and we ahve always known the provision of God, so we trust that it will continue. We are going through a tank of gas in 2-3 days and parking fees at the hospital are 5Dollars a day and .... Please pray for Phoenix strength to improve and that we would continue to see Miracles.

Thank you for your prayers, we feel them everyday and for all your love and encouragement, we are so thankful to be surrounded by love.

Five days since Phoenix's debut...

Today was my second full day at home. Our days have been FULL. Yesterday (thursday)Mike began his day at 4:45 and went to the NICU with his Mom before he had to take her to the airport, it is sad to not have her here, it was so great for all of us to have her extra set of hands and the little time we got with her. She sure loves her grandsons. He came home and picked me up and then took me to the NICU at 7am and I pumped and ate breakfast there, before visitor hours started, we had to meet with the Social Security office, and a line of other therapists and specialists visit us at the bed side to explain their role and help us with all our questions. Our nurse yesterday was Jennifer and she was sweet as can be. We were alone for awhile since Mike had to go sort the last of the details out back at the base.

It was a good morning I am continually amazed and thankful for the passion and love of these people for the work they do. Phoenix would not be living the life he will outside of all these peoples love and care. He had to have his wound care visit yesterday which is them changing the bandage and cleaning it, it was incredibly painful for him and hard to watch, my heart breaks for the amount of pain he has already endured and all that is yet to come. My hope is in that he will have a life FULL of happiness and love that will far outway these days. He is growing new skin already, that is great news, as they are hoping for that to grow and fullly cover over his wound, with the help of his platic surgeoun (crazy). It is really large, as everyone as continually stated, but after seeing it and talking with so many dr.'s I am understanding the rarity of this.

My Pain is decreasing daily and each night I am able to get more sleep, which truly makes all the difference in the world. Our dear friends Jamie and Gabe came in yesterday afternoon and they have been a blessing and encouragement in everyway, I love the provision of God even in friendship, it is so refreshing.

Mike and I spent the afternoon there yesterday and returned early this morning, yesterday afternoon Phoenix had to have a pic line and art line, put in, which are bascically very intense iv's that are threaded underneath your skin to your heart, it is the most efficent way to get Iv to him, it was a 4 hour process, because he can not lay on his back, it makes all of these process's much more difficult for everyone, including him. Needless to say, yesterday was an exhausting day and we left in time for dinner so that he could get some rest.

We returned this morning and he was bright eyed, they took him of the pain killer drip today and are slowly weaning him from the oxygen, so that he can be off some machines and they are trying to prepare him for his new bed, because it is a slow moving hydraulic bed, they are trying to limit the lines in him. He was doing great, lifting his head and responding to Mike and I's voice, these are the moments we wish we could hold him. I realize all that we take for granted on a daily basis, not just with babies but with those we love and with those who need to be loved. I know this, when we can hold him,when he's home with us, we'll probably never put him down, even in these heart aching moments agaon I turn my eyes to God holding him.

We came back home to spend sometime with Rowan and Jamie and Gabe. Then I took a nap and they all went to the pool. We returned to the hospital at Rowan's nap time. Phoenix was under a light with these adorable goggles on, his billyruben is a little high and so they are trying to get rid of the jaundice, he has been on a feeding tube with my milk for almost a full day know and they are hoping the combination will bring his numbers down. Also we got to meet his Urologist, whom is the Dr. that will help us learn how to cather him multiple times a day. Children with meningomyelocele (spina bifida) have little control or feeling of there bladder and bowels and basically need assistance and surgery to help them with these functions. He was telling us that 50 years ago most children with spina bifida died of kidney failure because of the failure if the bladder to function, but today that doesn't happen. That is a incredible to me!!!

Rowan has been AMAZING, Mike and I want to thank everyone for praying for him and wanted to update you on him. He has become more and more content daily and is very gentle and nurturing towards me since being home. He turns 2 tomorrow and I feel like God has placed such amazing strength in him and am so excited for him to be a big brother. We are consistenly blown away by his responsiveness to the friends and us eachday he becomes more of his own little person. It is wonderful to watch him grow up and appreciate the miracle that he is.

Mike and I have realized over and over again the miracles in medicine and that Phoenix would not have much of a shot at a life outside of all this intervention and speciality care that he is receiving. We are consistently amazed by the hand of God in all this and are beginning to see some of the cries of our heart being answered. We are soooooo in love with Phoenix and feel overwhelmed with joy for the life he will have!!! We continue to take it one day at a time and chose to see the blessing in each day and enjoy his every sweet movement.

There are so many things that we are praying continuosly for. We really desire to see God move in Phoenix's little body. Still we do not know what his mental capacity is like, and though we are prepared and grateful for anything we are asking God that he would be as brillant as the next child and able to experience learning and growing with other children, Mike has a picture in his head of him being quite witty. We are also praying for his bladder and bowels that we will see healing and improvement there and that his wound would heal without complications and quickly, his feet would take on better shape and loosening would happen in his legs as the physical therapists work with him. Also, there are a few differnet programs that we are in the process of waiting on to cover the excess financial strain (such as gas, parking, medical equipment...) that come with having a baby in the NICU,that all those process' would move smoothly and quickly is our prayer.

Ok that was 2 days off of blogging, I know the details will get less daily and we will try and update as much as possible. Thank you all for your love and support and encouragement and prayers, they are the breath that we breathe some days and the strength of our fight, we love you and are amazed by your kindness. We are reaping everyday the benefits of your love and prayers and these miracles that we have seen and will continue to see are because of your FAithfulness.

love.
Megan, Mike, Rowan and Phoenix

He is so beautiful. Doing well today, they put soft casts on his feet, to help shape them and begin working on helpoing with all the stiffness of his legs. He is still hooked up to oxygen and they are hoping to take him off of that in the next few days, as well as they are trying to see if he'll be able to maintain his body temp. They just received his special bed and it is not a warming bed, but it moves him automatically and will keep him from getting bed sores and stiffer than he already is. His hips are dislocated from the positioning in my belly and lack of muscle in his lower body, so the physical therapists are trying to best approach positioning him and how to handle all this. Our nurse today was awesome, she let us know that the NICU life, is full of ups and downs, that he may be soing well for a few days and then not so great, two steps forward one step back. I am praying that we'll only see forward, but one day at a time.

Tomorrow, we will be meeting with other doctors that we haven't met. Phoenix has a whole team of specialists that are working with him, it is Amazing the detail of which they are able to treat and care for his needs.

Our prayers today are for him to be able to maintain his own temperature and breath well on his own and that infection would not invade his body, that his wound would heal well and new skin would develop to begin the process of covering. That my body would heal quickly and that my pain would decrease, as it has been really hard. Tonight I would get sleep and feel refreshed, we have a FULL day tomorrow.

Love to you all.

My first day at the NICU...

Facebook | Joe Shelly Snyder's Photos - Mobile Uploads

Facebook | Joe Shelly Snyder's Photos - Mobile Uploads

I am home!!!

Hard to believe that Phoenix is here and that he is doing well. There is so many roads ahead and we will continue to walk forward and keep you up to date. Mike and I have felt overwhelmed with the love and friendship extended to us this whole process and these last days and weeks we haven’t felt alone and are amazed at God’s love extended to us through our friends and family.

It started with our close friends Nate and Dana with Olivia ( who is Rowan’s best friend). Dana and I experienced many similar seasons in the couple years we’ve been together, pregnancies, newborns, new marriage years, boot camp with our husbands gone, we spent many hours together and I have been continually amazed how beautiful her friendship is in my life and Nate and Mike have been best friends for many years,he is such source of strength and encouragement to Mike and I. Our time with them was easy and refreshing, they are like family. It was so great to see there newest addition Luca and for Rowan and Olivia to have a reunion, they had a blast together. Next, Joe and Shelly came into town on Saturday, they felt that they had to be here and since they have walked through every major season of life with us these last years, we of course couldn’t resist. Joe and Shell, have been our friends for 6 years, they were one of the first couples that I connected with when I moved to Wisconsin and they loved and invested in me so much in those first years. Shelly and I shared many nights of rich time together and Joe became a quick and loving big brother in my life. They are such treasured friends and a huge source of love and encouragement to us, Mike and I feel constantly amazed by the generous love and fellowship they extend to us. We were able to have a couple of days together before my surgery on Monday and we went on our first date in many months, it was so wonderful to share that night with them. As well as the time we had together to just enjoy eachother’s company and they encouraged both Mike and I with just loving and great converstions. On Sunday, Mike’s Mom (Amy ) arrived and she has been a blessing to have, Rowan has espiecially gotten to enjoy her. He loves his Mimi and I love having her support and friendhsip. On Sunday night another dear dear friend of mine came in to be here for the delivery and next day, Tracey. There are no words to actually explain her friendship in my life, except that it is constant and deeper than what we have built, God told her to be here to pray for us through this and it was soooo nice to have her as well. We all had a chance to spend some time praying before my surgery and it was an encouragement and brought great peace to Mike and I. We have friends coming this weekend and My Mom and a surprise visit from my brother all the way from Montana for a couple days, I am so excited to see him.
It has been so kind of God to surround us and we both know strength through our friendships.

Needless to say, I have not done a great job at getting sleep and that has made these last couple of days, extremely hard, I am not able to sleep well and am experiencing a high level of pain. Please pray for my body to respond better and recover quickly in the days to come.

Phoenix is doing well and we are sooo in love with him, he looks like Mike as all our boys do. He is strong, I guess that goes without saying, but his upper body strength is really good. After he woke up from his surgery he was looking and Mike and moving his head and body around quite strongly to try and remove some of the tubing, little fighter.He was transferred to a different hospital for his surgery so, I have not been able to see him since monday afternoon. Mike was with him before and after surgery and is fully in love with his little man. He was doing well yeaterday and had a nice visit with Mike and his Mimi.

Today, I will be released and able to spend some time near him, we will be able to hold him next week, which I am looking forward too. We have been encouraged to take it one day at a time, by friends and God, both throughout this last season and now, because each day will hold tons of new decisions and I want to just enjoy what eachone holds and not get overwhelmed by tomorrow’s, because of course we don’t even know what it all looks like. I know this is what so much of Phoenix’s life has taught me, to enjoy what I can and let go of the planning and the knowing part of life that we all want to have. We can miss out on so much if we are so caught up in what tomorrow holds.

Everyday I am learning to have a good moment of tears and to believe that all that is to come and the fact that we have Phoenix are in God’s hands and he will give to us all we need. I am sooooooo thrilled that he is here and that each day to come is full of the richness of his life and the way that we are changed heart and soul through this little child’s life.

We love you all and will update and post pictures as the days and week move forward.

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: mh.sahealth.com/

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.

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

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.