Life These Days

The days lately have been strange, to say the least. We never got to learn how to live life with Sawyer at home, but now I am struggling how to learn to live life without him. I am struggling with pretty much anything, from going to eat dinner to cleaning my house. I am CONSTANTLY reminded of Sawyer. This  isn't a bad thing at all, I love thinking about Sawyer and talking about him but I don't like being reminded of all of the things I will never do with him. I know that I am not suffering this alone, in fact since losing Sawyer I have become more aware of how often child loss occurs - much more frequently than ANYONE would like. We all have different amounts of time spent with our little ones and the time was all spent differently, but it doesn't make the pain any different. I read somewhere that losing a child is one of the hardest things anyone has to do in life, I would agree.

Usually I try to avoid being at home alone for extended periods of time, especially with Josh being back at work, but sometimes it is unavoidable. I have spent a lot of time with my mom or other friends, and usually I try to leave the house in the morning and come home when Josh gets home from work or right before. I have spent a lot of time visiting Sawyer's grave, the first few times were very hard. In fact, the first time I went I got "stuck" there and couldn't leave. I eventually pulled myself together and left, but I wish I could describe the pain I felt when I tried to leave. I know Sawyer's spirit isn't there and it is just his body, but I felt like I was leaving him all over again. It has gotten better now, and seems to get better the more often I go. I'm still not sure how to get past all of this, to adjust to life without my baby, and to start moving forward. I don't want to ever forget Sawyer and I know I won't, but I cannot sit out at his grave for hours every day. It wouldn't be feasible once I go back to work, and I know for a fact that Sawyer wants me to be out living life and not stuck. He is having a wonderful life with Jesus and he wants me to continue to be happy until we are reunited again. 

I have decided that I want to do the flower arrangements for his grave. It is something that I can do myself and something that is just for me and him. I am still not sure how often I will change it, but I know that every holiday will have a new arrangement, maybe a different one each month. Sawyer isn't here to celebrate these holidays with us, but this is something that helps me get through the holidays without feeling like absolute crap emotionally. I put this one up a little early, but Sawyer is ready for July 4th! We ordered the headstone last week so it should be coming in within the next 3-4 weeks. I am using this as a part of my healing process, but there are times when it still makes me very sad. I sent a text to a friend today that said "Instead of getting to celebrate the first year "monthly' milestones, I am going to the store to buy flowers for my sons grave because it is the most I will ever be able to do for him the rest of my life." That sums up how I feel about all of this at the moment.

I made this yesterday, thanks to help from my mom!

I really could spend all of my days here.

Sunflowers always remind me of Sawyer. After dinner tonight

 we took one out to the grave site.

I still don't know what I want people to say. I mean, there really isn't anything anyone can say to make this better. People ask how I am doing, and I don't know what to tell them. Every day is SO different and some are better than others, but some are much harder. I still don't think it has gotten any easier at all, but there are the days when I can cope better. Every day opens up a new emotional roller coaster but it has helped me to stay busy and occupied. Nights at home have been especially hard because the loneliness is so loud I can hear it screaming in my hear. Josh and I had to run some errands tonight and we stopped by Chili's for dinner (thanks for wonderful friends for a gift card!). As we sat there I started looking around. Almost EVERY table around us was filled with a family. There were two tables in close vicinity to us that had little babies with them. After trying to keep myself together I just let the tears flow. I felt like I had run right in to a brick wall and I just kept hitting it over and over, I couldn't turn around - I was stuck. I got up and ran to the bathroom to try and collect myself. I was then greeted by another mom and her son as she was taking him to the bathroom. I had just walked in so I was stuck standing in a stall while they had a conversation about his shoes and some other things. By that point I was shaking uncontrollably. Josh and I should be at dinner with Sawyer tonight. I should be taking him to the bathroom to change his diaper. But we aren't doing either of those things. We are sitting behind a table with blank looks on our faces as the world goes by and NO ONE knows what has happened to us. I am almost afraid for the next stranger to ask how my day is because I know they are just trying to be friendly and don't really want me to spill my life story to them. I saw our waitress go from table to table, and make small talk with the families and playfully smile at the babies and ask them silly questions. She gets to our table and is just as friendly, asking "What can I get for you two tonight?" I almost wanted to scream "THERE ARE THREE OF US, CAN'T YOU SEE?" But, just like everyone else in the restaurant they can't see. They can't see the love we have for Sawyer, they can't see the pain we are experiencing deep inside, and they also can't see Sawyer. I know he is with us everywhere we go, but only in our hearts. It isn't his physical being which I desperately long to have with me.

I stopped by Lifeway Christian stores today to try and get some books on how to handle/deal with my grief. There were a few I picked up off the shelf and purchased, but the harsh reality is that there is no "set" way to deal with grief. You just have to do it. You have to go through the hurt, the pain, and everything to get to the other side. The devil is in full force while you are grieving, too. He doesn't let up when you try to push out the negative thoughts and the questioning of God. In fact, I think it fuels his fire when we show weakness. I opened my Bible yesterday and was led to these two verses:


"The Lord gives strength to his people; The Lord blessed his people with peace" Psalm 29:11

"God is our protection and our strength. He always helps in times of trouble. So we will not be afraid even if the earth shakes, or the mountains fall into the sea, even if the oceans roar and foam or the mountains shake at the raging sea." Psalm 46:1-3

Even when I want to scream and yell and be completely pissed off, it is okay. God already knows every emotion I am going to experience, and He is right there to pick me up when I fall. Eventually we will get to the other side of this mountain. We will find peace in the Lord and one day we will understand His reasoning. It may not be here on Earth, but I know when we are reunited with our Savior (and Sawyer) we will be able to ask him just what His grand plans were with this terrible tragedy in our lives. I don't have all the answers, and I won't pretend that I do. I don't know why this happened to us, and I don't feel like it should have happened. What I do know is that God has promised us eternal life with Him and I know Sawyer will be there waiting for us. This life is much shorter than the promise of eternal life, MUCH shorter. Everything in my life has made it easy to praise God until now. I am reading the book "I Will Carry You" by Angie Smith. Here is an excerpt that I read last night:

He gives and takes away. Have I had moments of genuine questioning where I blamed myself and anyone else I could? Yes. But when the thoughts come, and they will, we must make a choice about who we will be from this day forward. Either we will go through life as bitter servants, or we will make Him famous with our love. I want Him to be famous."

This is all too true of my current situation. Angie and her husband lost their fourth daughter as an infant to some severe birth defects. Her words throughout this book have helped me understand my emotions, that they are okay, and how to praise the Lord through this storm. Sawyer was a warrior and I know he was a warrior for the Lord. He would not want Josh and I to sit around and be bitter servants, he would want his life to be used to glorify God. We are working to pick up the pieces right now, but are working towards using Sawyer and his life for the glory of God and to tell more people about the love that God has for us. I have talked to some people who are in awe of our faith and are struggling with their own. How could we not praise the God that was so merciful to our sweet boy? God swept Sawyer up in His arms and took him home to a life of happiness and no more pain. Had Sawyer made it through the surgery and the complications afterwards there is no telling how much of a struggle his life would have been. Now he is happy, healthy and looking down on his mom and dad - and we can praise God for that. It isn't easy at times, because I would much rather have Sawyer here with us, but I know that this life is a season and we will soon be reunited with our sweet baby.   

Psalm 147:3 "He heals the brokenhearted and binds up their wounds."

Love to all,
Ashlyn

P.S. There is a free car wash being put on my our church at the Sam's Club in Snellville, GA tomorrow from 10 AM-6PM! Josh and I will be there from 12PM-2PM and would love to meet some of you who have followed the story of our family. All donations will go to our family to help with medical expenses! 

Father's Day

I have been struggling lately with what to say about Father's Day. It has brought up a lot of emotions, some much harder than others. I kind of wish this wasn't a day we celebrated (thanks, Hallmark) so I could avoid this pain all together. But it's here, and I have to deal with it.  I don't really know where to begin, or where to end so I am just going to start typing. That is how most of my posts work anyways. Happy Father's Day to my dad, Keven, Josh's dad, David, and especially to my sweet husband, Josh. I love all three of you very much!

Let me start of by saying what I am thankful for this weekend. I am so thankful for my dad and the influence he has had on my life up until now, and the influence I know he will continue to have throughout the years. His support (and my mom's) throughout this terribly tragedy has meant more to Josh and I than words could ever convey, ever. I remember a lot about my childhood, but several things stick out. When my dad would tuck me in he would tell me about how things were made. He told me about everything from ceiling fans to ice cream. As I got older we became closer and there were nights we would stay up until 5 am talking about anything and everything, but especially how we were really the only normal people in the world. He taught me to be confident in myself and to do whatever I have set my mind to do in life. I'll never forget the night Sawyer had his surgery and he had to be put on ECMO. We came out of the consultation room and I basically fell apart telling my parents what happened and my dad was the only holding me together and telling me to be strong. Dad - I am so thankful for you and everything you have done for not only me, but also Josh and Sawyer. Thank you for being the Godly influence in our home and teaching me about Christ's love for me through your actions. I know Sawyer loved his Otter Pop. I love you dad!

I am also very thankful for Josh's dad (and mom). Without either one of them I wouldn't have my wonderful husband. I know Josh's dad raised him to be a wonderful Christian man and also taught him a lot about love. I am also thankful for the relationship we have. I wasn't sure when I met him how that would work out because we literally have the same personality (loud, outspoken, and silly) but it really has been a blessing. Now when I make smart-butt comments he laughs and says "I think she likes me". It's true - I love both David and Marla more than words can convey and also am so thankful for the support they have given and continue to give through this trial in our life. David, thank you for raising such a godly man who loves me with all of his heart and teaching him to be a great father. I am so thankful for your humor and that we can be silly and cut up with each other. Thank you for being the Godly influence for Josh and showing him Christ's love through your love for him. I love you! 

Now for the hard part. This is Josh's first Father's Day, and also his first without Sawyer. I am so so so sad that this is how our life turned out like this. We go out to restaurants and no one knows that we are parents. I just want to run around screaming telling everyone what happened so they understand. No father should ever celebrate his first Father's Day while grieving the loss of the son that is no longer with him. Josh and I grieve differently - as many men and women. He is a silent griever while I like to just let all my emotions out, hence the blog. I have struggled with what to do for Father's Day. I know Josh deserves to be recognized because he is an amazing father to Sawyer, I just didn't want it to be something that made him more sad. Many of you who were at the funeral remember the words he said - the words that broke everyone's heart. I am so sad that Josh will never get to teach Sawyer to play golf, go hunting, or play baseball. These are things that some fathers take for granted - but please don't, appreciate it because some fathers, like Josh, never have the chance when they would desperately love to do those things. Josh loves Sawyer and the way he cares about him and fought for him made me love him even more. I know Sawyer knows how much his daddy loves him. I also know that Sawyer wouldn't want either of us to be sad all the time, but it is a struggle because not only am I missing the memories I will never be able to make, I am missing the ones that Josh won't be able to make either. Josh, you are an amazing husband and father. I am thankful that we have grown even closer through the midst of something that probably tears most couples apart. We will see Sawyer again and he will be his daddy's best bud. I've said it before, but I'm pretty sure there is a golf course in Heaven and Jesus is teaching Sawyer how to play right now so you can play with him once we are reunited. I love you, and Sawyer does too. 

"Happy Father's Day, daddy. I love you very much!" - Sawyer

 

my precious, precious family

what a wonderful memory

I have to thank my Heavenly Father for his love and mercy. It's not just this day He should be celebrated and praised, but if we are celebrating our fathers, he needs to be included. A lot of people have told me how strong we are, but this is far from the truth. The only strength we have is from Christ. We have received comfort in knowing that Sawyer and us will have eternal life with Him, which means we will see him again! This doesn't always make the pain here on Earth easier, but it helps at times. Sawyer was very, very sick and God knew it was time to take him home, to give him complete healing. We prayed for God to heal our baby, and He did. I will be the first to tell you that it was NOT the way I wanted, but it was the way God designed. God knew our lives before we were ever thought of by our parents, and He knows what the future holds for us (Jeremiah 29:11).  I am thankful for Him teaching both Josh and I more about this life we were given, and for being there for both of us through this unimaginable loss. He has never left our side, and never will - for that I am grateful.

Nothing will change what happened. I wish it would, but Sawyer is gone and we can't bring him back to earth to be here with us. I am choosing to use this trial to praise Him and try to be a source of encouragement to those who may be struggling with something similar. "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5 NIV)" We may never understand the ways of The Lord and the plans He has for us here on Earth, but we are called to live by His word. It's been a struggle to trust Him, especially when I feel like Sawyer was literally ripped away from us. God has a plan, that is what I cling to for our lives. I hate when people say "you can try again" or "you will have more children" - thanks, I know that. What people don't seem to get is it doesn't matter how many more children we have, Sawyer was our first baby boy and he always will be and no future children will take away this pain or be some kind of "replacement", that isn't how it works. I know that people don't know what to say, and that whenever someone says something it is usually with the best intentions, but that is a hard one to hear because it just isn't comforting at all. I saw a quote the other day that said grief is almost like drowning, everyone else around you is continuing to breath while you are struggling for air. This is so true, it seems like everyone else has just picked up and moved on with life and we are just stuck here. We struggle through each day, especially these painful holidays, trying to figure out what "normal" even is anymore. The pain will never go away, we will just learn how to live with it. I know that all of this is being used for His glory and I am trying to keep my head up. My friend sent me this verse the other day:

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
2 Corinthians 4:16-18"

This is the promise we have from Christ, that because of our personal relationship with Him and believing in Him, we will see Him, and our sweet Sawyer again because what is unseen is ETERNAL. Sawyer isn't struggling anymore, God was merciful and called him home because his life here on Earth probably would have been one of suffering. Thank goodness for this promise of eternal life ("For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." John 3:16) we will see our sweet baby boy again. The days will turn to weeks that will turn to years, all time passing by putting us closer to the moment we will see him again. God loves us, and you, more than anyone could EVER imagine. Romans 5:8  says "But God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us." We have done nothing to deserve this love, yet He has given us everything. Thanking God and praising Him for all of His blessings and comfort through this trial.

Happy Father's Day to you, fathers. Be a Godly influence in your home and teach your children the love of God and show them that love through your actions. Love your wife the way God loves us, it will be the way your children treat other people. You are one of the main influences in your children's lives - teach them how to love and be loved. Be silly, be serious, be encouraging, be everything for your children and cherish those precious moments!

With love,
Ashlyn

forever in our hearts, we love you Sawyer!

Heartache

It's been a while since I have written; but I really need to write something. I have so many feelings swirling around that it's time. Warning; lots of raw emotions in this post. I appreciate those of you who have followed our journey and are continuing to do so, and thank you for praying for us. This blog has been an outlet that has really helped me deal with this situation and I hope it will be able to help someone else in the future. I never would wish this to happen to anyone, but the truth is that this happens more than I would ever care to think. 

I am up late with a broken heart. This weekend has been rough, and tonight has especially hit me hard. 

Today is June 9. 

Today Sawyer would have been a month old. 

Today should be a happy time in life. 

Instead of taking lots of pictures to document the changes of Sawyers life and even using those "monthly" stickers on his outfits to track his month by month changes, I am laying in bed crying. I miss my baby so much, and tomorrow will mark two weeks since we had to say "see you later" to Sawyer. I am so thankful for the 18 days we had with Sawyer, but I desperately wish for more. I long to hold my baby in my arms in the rocking chair in his nursery. It hurts to do "normal" things because I am constantly thinking 'Sawyer should be here,' and the hard truth is that he isn't, and nothing will change that. I am struggling with missing the memories that we will never have with Sawyer. I won't lie- it is hard seeing others make these memories with their children. It is hard seeing people announce pregnancies. I miss that time I had with Sawyer, and it's just a reminder of how that time is now a memory. A memory I will hold on to forever. It's hard seeing little boys and their mamas out in public - it reminds me of all the things I wanted to do with Sawyer and won't have the chance to do. It's all just really hard. I want to be that mom posting tons of pictures, but I can't. I won't ever plan a birthday party for Sawyer, take him to the beach, or teach him to ride his bike. I don't say this to make you feel sorry for me - I really say it to get my emotions out and also urge you to spend time with your little ones and love them like crazy. I know I said this in my last blog post but it is still true - life is short, so cherish the memories and make lots of them. 

God blessed Josh and I with Sawyer, and for that I will praise Him. I will be honest - my human nature is pretty irritated that this had happened to us, well lets be even more honest - I'm mad, furious, hurt, etc. Have you ever experienced the heartache and pain that is so intense you can feel it crawling up your throat? I hope you haven't, and that you never will. It sucks. I wouldn't wish this on anyone. I hope and pray none of you experience anything like this, but if you do I also pray that our story was able to help you in some way. A promise from The Lord that I have had to desperately cling to lately:

Blessed are those who mourn, for they will be comforted. (Matthew 5:4 NIV)

And another:

My comfort in my suffering is this: Your promise preserves my life. (Psalm 119:50 NIV)

I think it's natural to question God in any hard life circumstance, no matter the severity. There are times when I have been so broken I couldn't understand why God would let this happen to us. 

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11 NIV) 

I don't have to understand His plan - but I do know his promises for our lives based on Jeremiah 29:11. He has a plan for this, and His plans will continue. Sawyer's life and story have already brought people closer the The Lord. Maybe that was the plan? Sawyer was an inspiration to Josh and I, as well as many others. I can only hope his story continues to touch people, and I believe will. One thing I learned was to love deeper. No one is promised tomorrow. If the deeper love I learned to have through Sawyers life touches just one other person - that is another way his story will continue to have an impact. 

I know that no one knows what to say, and that is okay. Sometimes it is better to just listen or not say anything. Many of you have told Josh and I that you are continuing to pray for us - that itself means more than you will ever know. Please continue praying for peace and strength as we adjust to life without Sawyer, a life we never wanted to experience. Josh and I are also very thankful for the financial support many of you have given us recently. I am trying to get thank you cards out but I wanted to publicly thank you all, it has helped tremendously with medical bills and funeral costs. 

Have you heard the song Praise You in This Storm by Casting Crowns? I have heard it before, but when I heard it tonight it held much more meaning than it ever had before. If you haven't listened to it - go check it out. Here are some of the lyrics - 

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen", and it's still raining

As the thunder rolls

I barely hear Your whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

God is with us through this storm (I feel like it's a combo of a tornado, hurricane, monsoon, etc). He has never left us, and never will. I will continue to praise Him for the blessing that my beautiful Sawyer was, regardless of the short time we had with him. God will continue blessing us, and we will continue praising Him. 

I am so hurt and broken right now, but I am trying to remind myself as much as possible that my sweet angel will be waiting on me in Heaven and I know I will see him again! I rest in the fact that he is with Jesus having a grand time watching over his mommy and daddy. He will forever be in our hearts and forever be our guardian angel. 

Praising God for this amazing blessing. 

My word I love this beautiful baby boy. I cannot wait to see his precious face again. Mommy loves you so so much Sawyer!

one week.

It has been one week since we lost our sweet Sawyer. I haven't written much on the blog because, to be honest, I don't even know what to say. One week, 7 days, has felt like an eternity of pain and heartache to both Josh and I. This nightmare we have been living is not getting easier, it is almost getting harder. I never thought we would be in this place, and I never wanted to be here, ever. My mom said it great the other day on her Facebook page -

 "I do not know how anyone can make through a day like this without the saving grace of the Father.

"Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God, he is my mighty rock, my refuge. Trust in Him at all times, O people; pour out your hearts to Him, for God is our refuge. ".
Psalm 62: 5-8"

She posted this the day of the funeral, but it is true for this whole entire experience. If it wasn't for the hope I have of one day being reunited with my son and my Heavenly Father, this would bring more heartache than I have already experienced. If I didn't know my son was completely happy AND healthy, the sadness would probably cripple me. Don't get me wrong, I am still very sad and completely heartbroken, but it has been part of the healing to remember how happy Sawyer is and that we will one day get to love on our sweet baby. God has a plan for all of this, despite whether we can see it now or in forty years. My human nature would prefer he just shows me the plan already. And maybe he has? Maybe the plan was to bring me closer to God in a way I never imagined and maybe part of the plan was to use Sawyer and his story to bring people from ALL over closer to God, that part of the plan I have already seen. Maybe the plan was for one of Sawyer's useful organs (we decided to let him be an organ donor) to save another baby's life. If that was part of the plan I hope we can meet that family one day. Although he was only with us for a short time, 18 days, his life has made more of an impact on me and many others than most will in their ENTIRE lifetime. Someone shared this verse with us at Sawyer's service: "I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." Psalm 27:13-14. We have already seen some of the goodness of the Lord through this circumstance, and I am sure there is more to come.

Everything reminds me of Sawyer. Everything. We went in to an ice cream shop yesterday where a dad bought his daughter some ice cream - something we will never do with Sawyer. This whole trip reminds me of Sawyer because I desperately wish he was here with us, and we were making memories with him, but we aren't. The pain I feel is a combination of missing Sawyer and missing the memories we will never be able to make with him. I said some of this at the funeral, but I am going to post it here again. I will never take Sawyer to preschool, I will never plan a first birthday party for him, I will never take him to the beach, and I will never watch him graduate high school. I will never hear him say "mommy" or "I love you", which completely breaks my heart. It has been one week since I held Sawyer, and the time will just keep increasing. Whenever I get sad, Josh reminds me that Sawyer is here with us in our hearts, and that is SO true. I found this "poem" that has helped me find joy in all of the things that bring my heart pain:

"Daddy please don't look so sad, momma please don't cry. 

  Cause I'm in the arms of Jesus, and he sings me lullabies. 

  Please try not to question God, don't think he is unkind.

  Don't think he sent me to you and then changed his mind. 

  You see I'm a special child, I am needed up above. 

  I'm the special gift you gave Him, a product of your love. 

  I'll always be there with you, so watch the sky at night. 

  Look for the brightest star and know that's my halo's brilliant light. 

  You'll see me in the morning frost that mists your window pane. 

  That's me in the summer showers, I'll be dancing in the rain. 

  When you feel a gentle breeze from a gentle wind that blows. 

  Know that it's me planting a kiss upon your nose. 

  When you see a child playing and your heart feels a tug, 

  Don't be sad mommy, that's just me giving your heart a hug. 

  So daddy don't looks so sad and momma please don't cry. 

  I'm in the arms of Jesus and he sings me lullabies!"

Luckily the wind has been blowing a good bit around here and I have been getting lots of kisses upon my nose :) Sawyer was a sweetheart and I know he is looking down on Josh and I and watching over us. I miss being able to see him every day, but I am waiting until that day when I can see him again. I am SO thankful for the sacrifice that Christ made for all of us so that we can spend eternity with Him and Sawyer. It will take time, but I hope these things that make me so sad now will eventually be a reminder of the deep, deep love we have for Sawyer and the love we know he has for us. God blessed us with a special little boy, that I know for sure. 

If there is one thing that all of this has taught me it is to cherish the little things. I cherish every time he looked around at Josh and I, every smile, every dirty diaper, and every time he grabbed my finger. Life is short, this one extremely short. Please cherish these moments with your little ones, and all of the times you feel exhausted and overwhelmed, just praise the Lord he has blessed you with another day. Praise the Lord when they draw on the walls or pitch a fit over a toy at the store - both of these things, and many more, Josh and I will never experience with Sawyer. Love your little ones.

Sawyer was our little heart warrior. He will forever be in our hearts. 

rock bottom

The past 24 hours have probably been the most trying times of our whole entire lives. I realize that after the third surgery update yesterday I haven't updated the blog with any details, but we have been faced with more challenges than we could have ever imagined. Yesterday morning we arrived at the hospital at 5:30 AM to take our family back to see Sawyer before shift change and then got ready to head back to the CICU to hold our sweet baby. Around 9:30 we were able to head back and see him and also hold him. We also walked him down to the OR and leaving him there was one of the most difficult things I had to do yesterday. I posted regular updates about the surgery and you can read those in the previous posts. This post is going to basically pick up where I left off. What happened last night is anything but great so please be prepared when getting ready to read the details of our experience.

We got the call around 6 PM that surgery was coming to a close and Dr. Alsoufi would be out to speak with us in a few minutes. If you remember they told us from start to finish the surgery would last 4-5 hours, including anesthesia. We took Sawyer down to the OR at 12 PM, so the surgery was actually 6 hours total. Dr. Alsoufi came and met with Josh and I in a seperate room from our families to let us know how surgery went. He said that once he opened him up to perform surgery he realized just how sick Sawyer really was. His lungs are a lot worse than he had thought, and his pulmonary arteries were also much larger than anyone had expected. He told us that Sawyer was really struggling. The heart operation went great and the echocardiogram showed that his function was really good as well, but they just could not get him to stabilize. In fact, the surgery was actually over at 3 PM and it took them 3 hours to get him stable enough to feel comfortable moving him back to the CICU for recovery. With open heart surgeries on babies they sometimes have to leave the chest open because of swelling. They cover it with a patch and will go in and close it a few days later once the swelling has gone down. Everytime Dr. Alsoufi had tried to close his chest his numbers would drop so he had to leave the chest open and covered with a patch. By the time Dr. Alsoufi was talking with us Sawyer had been stable for about 45 minutes and he was comfortable with them transporting him back to the CICU. This is where things took a turn for the worse.

After talking to the doctor, we decided that we should probably go eat because we wouldn't be able to see Sawyer for another hour and a half. There is a restaurant near the hospital, literally like 4-5 minutes, that we decided we would go to eat and then we would head back ASAP. I was having a hard time dealing with the fact that Sawyer was struggling, but I wasn't going to be able to see him any time soon and there was nothing that I could do so we made the decision that we really needed some fresh air and some dinner. As we pulled in to the parking lot of the restaurant my phone started ringing. It was the nurse that works with Dr. Alsoufi calling to say that Sawyer wasn't doing well and we needed to head back ASAP. The surgeon was in the CICU having to open his chest back up to perform more surgery. We called our families (who were already inside the restaurant) and told them to leave now and head back. I don't think Josh has ever driven so fast in his whole entire life, the whole time we were both crying out to God to please save our baby and guide the surgeons to make the right decisions that would help save his life. We really didn't know what was going on and wouldn't until we could get back and meet with Tracy, the nurse who had called us to come back. I literally thought we were going to lose him.

As soon as we got back we ran to the CICU and found Tracy. She took us to a small conference room and sat us both down to tell us what had happened. As soon as they got back to the CICU his numbers started going crazy. His blood pressure was all over the place and his heart rate was in the 200's (WAY too high). When he left surgery he was on a lot of medication to keep things regulated, so they gave more medicine and when that wasn't working they knew they had to do something. About that time he went in the cardiac arrest and his heart stopped beating so they had to do compressions. After about four minutes his pressure went back up, but Dr. Alsoufi made the decision that in order to save his life he would need to be put on the ECMO machine. The ECMO machine is a heart and lung bypass that takes all of the blood out of the body, oxygenates it, and then puts it back. It allows the heart to rest and recover without making the other organs of the body, such as the brain and kidneys, suffer from the heart not working properly. His right ventricle is VERY thick. The heart is a muscle so since it has been having to work SO hard in and out of the womb it became thick. His heart was also very tired from the combination of working before surgery and also the significant surgery he just went through. ECMO allows his heart to rest and recover and in about 2-3 days they will start the process of weaning him off. This is VERY serious and right now is the only thing keeping Sawyer alive. We are thankful that the nurses and doctors knew the right things to do and the right time to intervene, a blessing that we can only thank God for right now. Josh and I have hit rock bottom. I NEVER imagined that this is how things would turn out and I am falling apart. Sawyer is such a fighter and I know he will make it through this, I know he will. The waiting and making sure everything goes as well as they would like in order to transition him off the machine is the hardest part. We have been able to see him and that wasn't easy. He is connected to so many wires and tube and it is just so different from how he looked before surgery.

Sawyer will still need lung intervention after they can get him off of ECMO. Right now we are taking this stage by stage and his heart is the MOST important thing. I know that he was just tired from the surgery and how hard his heart was working before so I am hoping that we will only have the minimal days of ECMO and he proves to be improving. Just to give you all an idea on how large his pulmonary arteries were - they should measure 5-6 mm, they could only reduce them to 9 mm so they are still large but the orginal size was 24 mm.... They were HUGE. With that being said, his lungs are severely affected. We stayed at the hospital last night and called to check on him pretty regular. All of the nurses and doctors have told us how impressed they are with how he is doing. We know God's hand is in this and that he is taking care of our sweet Sawyer. They will continue to monitor him on ECMO until at least Saturday before they make any decisions. He needs time to rest and they don't want to rush that, and neither do we...

We are so thankful for your prayers. I have read all of your comments and messages, I just can't respond to them all individually. Our families have been a huge support and I honestly don't know where we would be without them. Josh and I are clinging to God's promises and crying out to him that he will protect Sawyer and help the surgeon and doctors continue to make the right decisions. Please continue to pray for Sawyer and I will update as I can. Majority of the updates will be on the facebook page - www.facebook.com/BabyMurphyUpdates.com

For more information on what ECMO is please visit this website: http://www.mch.com/page/EN/2052/Extra-Corporeal-Membrane-Oxygenation/What-is-ECMO?.aspx

He will continue to have two nurses, one to monitor his numbers and one to monitor the ECMO machine.

Ashlyn