Tuesday, July 28, 2009

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.
Monday, July 20, 2009

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.
Monday, July 13, 2009

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.
Tuesday, July 7, 2009

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.
Friday, July 3, 2009

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.

Megan, Mike, Rowan and Phoenix
Wednesday, July 1, 2009
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.