Wednesday, May 29, 2013


Tonight was such a sweet blessing. My sweet Sawyer looked like a precious angel and I am so glad we were able to share him with everyone over the last few weeks and tonight especially. I am so touched by everyone who came out to show their love for our family and Sawyer. 

It is easy to get sad and depressed about everything that is going on with our lives. I have felt the hurt and pain and anger and those feelings are still very real. I am choosing to cherish the memories I have of my sweet boy and all the time I was able to spend with him. I am so thankful I was his mommy and that Josh was his daddy. We will see him again and I cannot wait for that day. For now, I will always remember him and make sure his life and story are used for God's glory and to help others. 

I know I can cry out to The Lord with my pain. He knows EXACTLY how we feel. He gave His Son as a sacrifice for us, all of us, and that is the reason we will see Sawyer again. Josh and I have chosen to trust in The Lord and fully commit our lives to Him and know we will spend eternity with Him and our precious Sawyer. God holds every tear we cry in His hand and cries with us. Tomorrow is going to be tough, but we are thankful for everyone planning to be there to support us. 

I wanted so badly to pick Sawyer up out of that casket and bring my baby home. He was so perfect and it is so hard for us to have to bury our baby. Thank you all for your continued prayers. Sawyer has a new healthy heart and is perfect and happy with Jesus. I can't wait to see him again! 

Joshua 1:9 

Remembering our sweet Sawyer

From the Facebook page:

"Many of you have been asking about arrangements for our sweet Sawyer. Please see the details below. All of you are welcome to join us for the visitation and the chapel service. We are thankful for your prayers over the last few weeks and months and would be honored if you would join us in remembering the sweet life of Sawyer. 

Wednesday, May 29, 2013
4-8 PM 
Wages & Sons Funeral Home
1031 Lawrenceville Highway
Lawrenceville, GA 30045

Chapel Service
Thursday, May 30, 2013
2 PM
Wages & Sons Funeral Home
1031 Lawrenceville Highway Lawrenceville, GA 30045

There will be a private graveside service for our families. 

A lot of people have asked about meals for Josh and I. Right now we are asking that we have privacy and we will be leaving town after the services for a few days. If you would like to bring us a meal when we return, someone will be setting that up and you can sign up then. 

Josh and I are so thankful for all of your love, support, donations, and prayers. Sawyer touched our hearts and we will love him forever. He showed us how to be stronger than the battles life gives us, and a love like no other. He touched more lives in the 18 days he was here with us than most people do in their lifetime. I pray that God shows us the reason for all of this, but for now we trust in Him that Sawyer's life has been used and will continue to be used for God's glory. We are extremely heart broken by this whole experience but are resting in the fact that Sawyer is healthy and happy and playing a round of golf with Jesus. We will miss him terribly, but grateful that we can spend eternity with him and our Heavenly Father after our earthly time is over."

Tuesday, May 28, 2013

Sawyer Joshua Murphy - our precious angel

I am sorry I have fallen behind on blog posts, but the Facebook page has been kept pretty up to date. Here is the latest on Sawyer from Facebook and I will be posting more later after the coming days and Josh and I have a moment to collect our thoughts.

"Sawyer Joshua Murphy went to be with his Heavenly Father tonight while we held him in our arms. Josh and I are heartbroken that we had to say goodbye to our sweet baby, but are thanking God for the 18 days we had with him and rejoicing that he is no longer in pain or struggling. 

No parents should ever have to bury their baby. Ever. Please hold your babies close to you tonight and thank God for the time he has given you with them.  

Continue to pray for our family as we deal with this loss of our sweet Sawyer. He was a true fighter and fought until the very end. We aren't sure what God's plan is through Sawyer's short life here on Earth but we pray that He is glorified through all of this."

Thursday, May 23, 2013

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 -

For more information on what ECMO is please visit this website:

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


Wednesday, May 22, 2013

surgery update #3

Today has been the longest day of my whole life. We were up at the hospital at 5:30 AM to take our parents and siblings back to see Sawyer (they are the only ones we have taken back to see Sawyer so far to limit his exposure to outside germs and keep him healthy). Ever since then we have been going, going, going. 

They called at 4:45 to let us know they are winding down. They are slowly taking him off bypass and will be finishing up. We aren't sure when they will be done, or how things went, until they call in an hour. We will also meet with the surgeon to go over the surgery. Because of the swelling they will leave his chest open with a patch over it in order to allow the swelling to go down. Once it's gone down they will close his chest (not another operation just something that will be done in the CICU in the next couple of days). 

Please continue to pray - we are eager to meet with he surgeon to hear how things have gone. We won't really know the prognosis of the lungs until the next few days after he has recovered more from this heart operation. 


surgery update #2

Josh and I walked with Sawyer back to the OR room around 12 PM. We both gave him kisses and told him we loved him. Walking away was probably one of the hardest things we have ever done. No one can prepare you for how it feels to leave your two week old son for open heart surgery. 

After we left him, we headed to the family waiting room where they will call us with updates. The sedation process takes about an hour so we were prepared for a call around one. We both got lunch and settled in with our families to wait for the call. They did call at one and said he had gone to sleep fine and they had just made the incision. We were told the next call would come in an hour to an hour and a half. TWO HOURS LATER at 3 PM- they finally called! They have successfully gotten him on bypass and they are doing the repairs right now. The next call will hopefully come within an hour to an hour and a half. 

Thank you for continuing to pray for our family and sweet Sawyer!
Here are some more pictures!


surgery update #1

Hi everyone! Just wanted to let those know who follow our blog but not necessarily our Facebook page that surgery has been delayed to closer to 12 PM. Sawyer was second case, so he had to wait for the first surgery to be completed. I am happy to say that Josh and I were finally able to hold him - check out the pictures! I can't describe how amazing this feeling was to finally hold my son after 13 long drawn out days!

Please continue to pray for Sawyer and all doctors/surgeons involved in the surgery!


Tuesday, May 21, 2013

Surgery is scheduled!

Today was quite the day. I posted yesterday about Josh and I's frustration levels with the lack of communication and plans being made for Sawyer. We planned to attend morning rounds and voice exactly how we were feeling to try and make some progress. We also planned to request a consultation with the surgeon if we didn't get any answers from the doctors at rounds.

We showed up to the hospital at 6:45 AM to see Sawyer and sign up for rounds. You have to sign up and then they call you back once they get to your baby and you are able to go in to the CICU (Cardiac ICU). Rounds typically don't start until 8 AM so we went to the cafeteria to eat breakfast and wait. They called us back around 8:30 and the whole time we were walking back there I was praying that God would allow me to speak with intelligence and keep my cool, but also that we would have some answers. I don't think I was really prepared for how things were going to work out. 

Upon entering we were explained what was going on and how his x-rays were looking. They didn't waste much time before telling us that another surgeon (other than the one we were originally using) had offered to do the surgery TOMORROW. Our original surgeon, Dr. Kanter, has been booked up and could *possibly* do the surgery Friday, but it wasn't anything they could guarantee. The other surgeon, Dr. Alsoufi, offered to do the surgery for us tomorrow and all of the doctors in rounds highly recommended him and told us they would NEVER offer another surgeon if they didn't have confidence in his ability to do the surgery. We discussed some of our other questions and set up a meeting with Dr. Alsoufi to discuss the surgery and meet him BEFORE we made any decisions.

We left rounds a little confused. We had planned to go in there and either get a plan of action for Thursday, or to really give them a piece of our mind (as respectfully as possible) about how they were handling the treatment of surgery. I know this isn't the case, but it really felt like we just kept getting pushed back. As serious as they made his condition sound it bothered us that they weren't acting sooner and it appeared that they ONLY reason they hadn't done the surgery was because Dr. Kanter was busy and backed up. Dr. Kanter is one of the best in the United States so we would have loved to have him do the surgery, but it was becoming more and more evident that we were going to have to consider other options to help Sawyer and help get this taken care of as soon as possible. I called the pediatric cardiologist that had done the pre-natal care, and will continue Sawyer's care after Egleston, to get his opinion. He said he did not know the doctor personally so he couldn't recommend him based on his opinion, but he did call the doctor at Egleston that was a part of our rounds this morning and got his opinion. He told us that at this point it wasn't about the surgeon, but more about the fact that Sawyer needs surgery and needs it soon. Dr. Alsoufi is relatively new to Egleston, but his background and experience is EXTENSIVE, and we know they would not have hired him if he wasn't held up to their standards.

We met with Dr. Alsoufi and he explained that he would make the pulmonary arteries smaller, close the hole in his heart, and also add the missing pulmonary valve. He explained that the surgery would be about 4-5 hours long and Sawyer would need another valve replacement at about 3-4 years and then another at around 14-15 years. Sawyer's condition is VERY rare. Egleston only sees about 3 cases a year. The operations they will be performing are ones they do regularly, it is just the combination of them all that is the rareness. After meeting with Dr. Alsoufi we left to eat lunch and make our decision. Both of us agreed that we had an overwhelming sense of peace about using this surgeon and also that Sawyer would benefit from having this surgery sooner rather than later. With all that being said - Dr. Alsoufi will be doing the operation tomorrow at 10 AM. Sawyer is his second case, so if the first surgery runs over it may get pushed back slightly. Also, the nurses have told me I will get to hold Sawyer before surgery. The concern so far has been his breathing tube and the chance of it coming out, but since he will be headed to the OR tomorrow, they are more comfortable with me holding him then. He was on his back today for almost 6 hours and did GREAT! So, I don't think this will be a problem, but I am also not letting them change their mind. I will be holding my baby before they take him for open heart surgery. 

There are a few things I want to make everyone aware of in regards to surgery. This surgery is going to fix his heart issue and help alleviate the pressure off of his lungs BUT our road is FAR from over. Sawyer has serious lung issues and breathing problems that will have to be diagnosed AFTER they move the pulmonary arteries. They have to alleviate this pressure in order to see how affected his lungs are and also how they can function. He will probably need to be on the ventilator for another week after surgery, and there may have to be some additional intervention in regards to breathing. None of this will be known until after surgery tomorrow. We are closing one door of unknowns only to walk through another. I wish this one surgery would make everything better and we would be able to go home as soon as he has recovered, but his lungs have been compressed for so long through the development in utero. The doctors have prepared us for this from the beginning (ha, I have lost the meaning of prepared) and have told us that for the first year of his life we will need to be on the safe side because even a common cold could collapse his lungs again. The first year is when the lungs are continuing to develop and is really a key time.

No one can prepare you for having to take your two-week old son back for open heart surgery. No one can prepare you for not being able to hold him for two weeks. No one can prepare you for the emotional roller coaster you will ride. I tried to prepare myself before birth but I honestly failed miserably. I am thankful we found out before birth so I knew that the road ahead would be hard, but I never knew how hard it would be. I am learning every day to rely more on the Lord and the blessing He has already shown us through the two short weeks of Sawyers life. 

Please pray for Sawyer tomorrow and that he continues to be a fighter. 

Please pray for Josh and I to continue to remain strong.

Please pray for our families.

Please pray for the surgeons and doctors that will be involved in this operation and that God will guide their hands.

We are so thankful for the outpouring of love we have received from friends, family, and those we do not even know. Words will never be adequate for what that means to us, but it really does mean a lot. All of the prayers, words of encouragement, and donations have been one of the big blessings we have received. Thank you all so much!

Here is the link to buy tshirts and keychains - Enter the website WITHOUT www in order to get to the correct site for ordering! The proceeds from these orders also go directly to our family to help offset costs, and they are both really awesome!

There are two other fundraisers going on right now:
The first is through our friend, Harriett Brawner and Lia Sophia jewelry, . You can order anything from the catalog, you just have to enter Ashlyn Murphy as the hostess. If you have any questions - let me know and I can pass them along to her! All proceeds from this also go to Josh, Sawyer, and myself.

The second is through a friend of a friend, Danielle and Origami Owl jewelry. The website is and you can order anything from the website. At the checkout screen, select "Fundraiser for baby Sawyer Murphy" in the Jewelry Bar Information section. All proceeds will be donated to our family!


Monday, May 20, 2013

through the roof...

That about explains my frustration levels... through the roof. There has been a severe lack of communication between the doctors and Josh and I and it is to the point of being ridiculous, even the nurses have started to pick up on it. Most of you probably remember the blog post from last Wednesday that indicated that we would be having surgery Monday or Tuesday, but unfortunately that is not the case. I wish I could tell you why they haven't scheduled it before now, but I really don't know why they are waiting to get things done. 

Sawyer is becoming more and more alert, which in turn means he is trying to fight the tube more and more and he becomes more and more agitated as time goes by. They were giving him doses of morphine and versed when he would get really upset (heart rate increases and saturation level decreases) and the amount of doses has been increasing over the last few days so now he is on a constant drip of versed to keep him comfortable and also keep his saturation levels high. They thought this would be a better way of giving him the medication than having to run it through his PICC line. This all is pretty upsetting to me as well because I can see my baby getting upset and there is really nothing I can do for him. We met with one of the 'fellows' this afternoon to discuss some more of our frustrations and concerns and also try to get an answer on surgery. He told us the word is Thursday, but not to get our  hopes up. And if there is one thing this stay at Egleston has taught us, it is to not ever get our hopes up so we aren't. It would be nice if the surgery was Thursday, but I just can't get my hopes up and I will have to wait and see. 

We also discussed the issue with the lack of communication from the doctors. They are all very well aware of how we feel and are making an effort to better communicate. He did discuss the fact that the lung issues won't go away after the surgery and they will most likely have to do something to correct and/or help them. We aren't sure what that means and he couldn't give us clear answers but he did say that the ENT doctors would be reviewing the case tomorrow and make a decision on what they felt was necessary. They may try to talk with the surgeon and see if they can do something at the same time, or they may have to do something at a later date (obviously sooner than later). This is all still up in the air but I will keep everyone updated as time goes on. He explained that they have been adjusting his ventilator settings because they are trying to prevent any lung damage to his right lung. They can force air in, but then because of the compression, the air cannot come back out which can result in lung damage.

We are going to rounds in the morning to see if there is a chance the surgery has been scheduled. We are also going to discuss the issues we have of the almost two weeks he has been on the ventilator. Josh and I are the advocates for sweet Sawyer and we plan to fight just as hard as he is to get this all behind us. We are extremely concerned about lung trauma and would really like to get things taken care of and looked at so that Sawyer can be on his way to recovery. If surgery has not been scheduled by rounds tomorrow, Josh and I will be requesting an immediate meeting with the heart surgeon. We understand that the heart is of concern, but so are his lungs and we don't like putting off one surgery to risk the development and health of another organ. 

Please pray surgery is scheduled tomorrow, and if it isn't that we are able to meet with the heart surgeon as soon as possible.

Please pray I keep my sanity through rounds in the morning and am able to explain myself and all of our concerns without getting too angry or upset.

Please pray for Sawyer, our little fighter, that he continues to be a heart warrior and fighter.

Please pray for discernment for the doctors and that they make the best possible decisions for Sawyer and the surgery.

Please pray for Josh and I as we continue to WAIT as we have for almost two weeks. 

Please pray that the ENT doctors feel it will be a 'simple' fix to help him breath on his own and that we will be home sooner than later with a happy, healthy baby.


Saturday, May 18, 2013

Joshua 1:9

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." 

When Josh and I found out about Sawyer's condition we still had not decided on a baby name. Knowing all that he would have to face at such a young age I wanted his name to mean something. Sawyer is a name that Josh and I both love, and most people probably think that his middle name is Joshua after his dad but that is not necessarily true. Joshua 1:9 is a verse that I have read over and over throughout these last few months and it has really been a source of encouragement. Sawyer is one strong boy and I hope he can cling to this verse throughout the rest of his life. A lot of people have commented on how strong I am through all of this, but this strength is not my own. It comes from the Lord and He has blessed me with a strength that is nothing I can achieve on my own. The Lord knows exactly what I need and when I need it and He has held me together when I literally feel like I am falling apart. I am human and I have my flaws but I am actively working on my relationship with the Lord and learning to depend on Him for all of my needs. With that being said, there are days when I feel so alone and afraid of everything that is going on that I am a bottomless pit of tears and emotions, but every night I am reminded of the Lord and His blessings for me and my family. Here are a few verses that have stood out the last week:

"Wait for the Lord; be strong and take heart and wait for the Lord." Psalm 27:14

 "So we say with confidence, 'The Lord is my helper, I will not be afraid. What can mere mortals do to me.' " Hebrews 13:6

"Be strong and take heart, all you who hope in the Lord." Psalm 31:24

The Lord is always on our side and will always reveal His plan in His time, NOT mine. Those of you who know me you know that I am hard-headed and a control freak. Not something I am entirely proud of, but it is the truth. The experience has taught me to rely on the Lord and the strongholds of his grace over my life. He will never forsake me, no matter how angry I get and how often I question His plan, He still loves me and is still the rock in which I can place my faith. Also, Josh is named after the verse Joshua 24:15 "But as for me and my household, we will serve the Lord." Josh and I have only been married a little over a year, and when we found out we were expecting we NEVER thought that the pregnancy would take a twist and we would spend the first few weeks of our baby's life at Egleston, but we are here. We have grown closer as a couple and family, and learned to rely more on the Lord and His plan.

When I first started this blog I wasn't sure where it would take me. I wanted an outlet for my emotions and a way to share the updates of our sweet Sawyer with our rather large family. I now have over 300 page views daily and most are from people I have never even met but know of our story one way or another. I am choosing to glorify God through this experience and I hope that it makes an impact on at least one other person. We all have daily struggles, some that seem heart-wrenching and too much for us to handle, and in reality, they are too much for us to handle alone. But the Lord has promised to NEVER forsake His people and I am so thankful for the personal relationship I have with him because I would never be able to make it through this.

Here are some blessings that are arising amidst the struggle:

1. Sawyer- He is a such a miracle and blessing and makes my heart complete. The Lord has blessed me with a perfect son and I am so thankful. The doctors knew exactly what was going on and were prepared so we weren't taken by surprise.

2. Josh - He is an AMAZING father and husband and I wouldn't want to walk this path with anyone else. We met over 5 years ago and I had no idea where life would take us, but God knew. And He brought us together knowing that we would walk this path together and I am SO thankful!

3. Family - Our families have been such a support system through all of this and I am so glad that they all live relatively close. Josh and I have needed many shoulders to cry on and they have always been there. 

4. Community - I am so thankful for the community of followers that have committed to pray for us and our baby every day. Through prayer, words of encouragement, and donations you all have been a wonderful support system. 

I hope this post offers someone a glimpse of hope. There is a light at the end of our tunnel, and at the end of yours too. God is not going to let you walk this path alone, you just have to put your trust in Him. He knows the plans for your life, and they are great! Everything does happen for a reason and I am choosing to use this circumstance to glorify Him and try my hardest to praise Him in the midst of a hurricane.


** I know there are many people who read the blog who may not be aware of the facebook page. I post A LOT of updates there, more frequently than here. There are also a lot of pictures of Sweet Sawyer :) Please head on over to and "like" the page so you can get the most recent updates and pictures!


Wednesday, May 15, 2013

finally... A PLAN!

After thinking we would get some answers Monday, I am very happy to say that we finally have some answers today! Let me start with where we left off yesterday.

We attended rounds yesterday and were told that they would make a decision about the plan of action in regards to surgery and that we would know something by today at the latest. I wasn't holding my breath though because they have said that before (Monday) and we didn't get any information. Last night we headed home to our house for the first time in 7 days to sleep in our own bed and because we want to save money to afford the hotel for the days he has surgery and is in the CICU for recovery. Although I hated leaving my baby earlier than usual, I was happy to put my feet on my own floor, love on my animals, and take a shower in my own shower. It was pretty hard knowing we aren't bringing my baby home, but I think I did pretty well. My parents made us dinner and have been taking care of our dog, Dixie. Dixie was SO excited to see us! We "slept" in this morning and made a plan to be down after rounds so we could get an update.

When I walked in our nurse said that he had a great night and that rounds went well. The plan is surgery Monday or Tuesday! They have a very full schedule this week, so they are trying to get him in as soon as they have an opening. I am so relieved. I don't want my baby to have surgery, but he needs it and this is the best option so I am so relieved that they have finally realized this! We have only been trying to tell them this since we got here. After surgery he will still have significant breathing issues because of how the pressure has affected his bronchi and lungs. This will be something that we work on and see how things are after surgery. He also is on a feeding tube right now and it is my hope they will try to wean him off, but his heart issue combined with the breathing issue may make that a long process. Either way he will be getting his feeds so that is okay with me! We will continue to stay at home for the next few nights until Sunday night when we will stay in a hotel so we can be close by for the surgery and recovery. We have no idea how long he will be in the CICU for recovery, but we plan to stay in a hotel as long as he is working on getting better after surgery. I want to be really close by so that if anything happens, and it could, we can be here in the blink of an eye. It scares me to be so far away at home if something might happen.

Thank you for all your prayers, support and donations. They mean a lot and have really helped to alleviate the stress of the financial bills, hotel expenses, and also gas. Some of you have asked me for the link for donations. Our dear friend, Kelly Ford, has set up the link on her blog: The link is on the top right of her blog under "Baby Murphy Fund". I am so thankful for her doing this for us and any amount has really helped us throughout this incredibly stressful time. These donations go through paypal and Sawyer is considered a non-profit so there are no fees associated with the donations and it all goes straight to Josh and I! 

Please continue to pray for the next few days as we wait for this surgery. I think that right now I am okay with everything but as the days go by I am sure I will get more and more worried and stressed. I don't want my baby boy to have open heart surgery, but I know he is a fighter and the surgeon is WONDERFUL! God has his arms wrapped around Sawyer and I know he will protect my baby and also Josh and I. Next week will probably be very rough. Once I know the specific day and time I will let you all know so you can pray with us at that time. Please also pray for Josh as he has to go back to work tomorrow and Friday to save up time to take off for the surgery :( I will be coming to the hospital to spend time with Sawyer. 

Today has been a good day and he has been opening his eyes a lot more! His condition makes him retain fluid and his eyes are puffy so it is difficult for him to open his eyes. He tries really hard! Thank you again for all the thoughts, prayers, and donations. Words can't describe how thankful we are for all of you.


Monday, May 13, 2013

a better day...

After last night I prayed that God would open my eyes to the little blessings He is giving us through this struggle. I prayed that He would help me be thankful and rely more on His strength when I am weak. God knows the plan He has for Sawyer, Josh and I and I am working so hard to trust that plan and know that it will be the best. 

I want to start by thanking everyone for reaching out to me, offering encouragement, and especially those of you who have sent donations to help us off-set costs during this time. We are so appreciative because these times are definitely costly and very expensive, but we are making it work because there is no amount of money that matters when it comes to our baby. Thank you again and I promise to keep you updated as much as I can!

We headed to the hospital this morning around 11:30 AM to see Sawyer for the morning. Today was Emory's graduation and I was so worried that they would have used the parking deck and we wouldn't be able to find parking. I prayed that God would allow us to find a spot so I could go see my baby. We pulled in and the lot was unfortunately full. They even made the car in front of us turn around. We asked the attendant if we could just try to find something and she started to say no when another attendant came running over and said, "Let them in, they can park in the oversized vehicles spot!" - I was so happy! When we got to Sawyers bed he was laying on his back! We got an update from his day nurse Mallory who said that they were going to continue to leave him on his back because his numbers looked good and they would continue to adjust the ventilator settings. He is up to full feeds now - 20 mL! Most of his feeds are coming from me and they supplement with formula when they don't have any of my milk to give him. Josh and I were able to catch a time when he needed a diaper change and I was able to do the honors! I almost got pooped and peed on, but he was just successful with the pee - so happy to be peed on :) We noticed he was having to breath pretty hard even though his numbers looked good. I made a comment to the nurse just so she knew how we felt about the fact that he looked like he was struggling.We left then and went to lunch.
Love me some baby feet!

Diaper Change!

After lunch we went back and he was still on his back! He was still breathing pretty hard but his numbers looked good. I noticed that the bedside next to us had a good amount of doctors and the mom and dad were standing near their daughter. Our nurse told us that they would be doing a surgical procedure later and our pod would be closed down until they were finished so we wouldn't be able to see Sawyer. I desperately wanted to reach out to the family because they had been upset earlier in the hall, I just didn't know what to say. We left to meet with the Social Worker and that took about an hour. We were going to go back afterwards but we noticed that they were getting ready to shut the pod down. I saw two "biker men" in the lobby area and they were pretty upset (they were with the family of the little girl in the bed next to Sawyer). I went up to them and told them I was sorry for all they were dealing with and that we were praying for them. He then told me that the little girl, I believe her name was Chesney, was going to be with Jesus later that evening. I totally lost it. He then prayed over me and Sawyer and prayed for healing. It was so amazing to have someone dealing with that to pray over me. Josh and I couldn't see Sawyer so we headed back to the waiting room where we hung out with my parents and also sat near the family of Chesney. I was so upset for them. That was probably one of the hardest things to sit and watch them grieve. 

The unit shuts down at 7AM - 10 AM (doctors do rounds) and then from 7 PM - 8:30 PM (nurse shift change) every day. At 8:30 we were able to go back and see Sawyer again. It was upsetting to see the empty bed next to him when we walked in. He was laying on his tummy and seemed to be breathing fine. His night nurse was Patrycja (I think that is how it is spelled!) and she gave us an update. They have been taking blood gas levels to see how he is responding to the ventilator changes and they were the same and there had been no changes in ventilator settings. Josh and I stepped out and let his parents and my parents have a turn and then I took his sister back to visit! Josh came back to switch with his sister and the fellow cardiologist was doing rounds. He didn't really offer his opinion but told us basically the same thing - they would like to wean him off the ventilator and send him home to grow before surgery but they know it might not be possible. They will spend the next few days trying to do that and see how things going. I asked how long they would keep him on the ventilator before they realized weaning just wouldn't work but he didn't give me an answer :( His left lung has some fluid on it and I can feel it on his back while he is breathing and they have had to suction him a lot. While we were back there Sawyer opened his eyes! This was another blessing! I have been wanting to see him open his eyes for so long. Sometimes they have to give him some sedation and he is usually sleeping every time we are there, but not tonight! He was looking all around at Josh and I and my heart was so so happy :) I love that little boy and I know he was recognizing his mommy and daddy's voice.
My mom made this adorable pillow for him!

Sawyer has open eyes and Mommy has a happy heart!
I think he was in the middle of a yawn :)

Tomorrow is going to be a long day! Every day you can request to be included in rounds, but you have to be there at 6:45 AM to sign up :/ Rounds are where the doctors and nurses will discuss the goals for treatment for the day and we can ask questions. We will sign up and then go to the waiting room and they will call when it is our turn. It could be early or it could be later (all the way til 10 PM). They had a cath conference today with the surgeons and we know they discussed Sawyer so hopefully we will get more updates on their goals and I can get answers to my questions. I don't care if I have to ask the same question 45 times I will get answers. I will also express my concern of his labored breathing and other things. Hopefully we will get answers, if not I will keep asking! 

Please continue to pray that the doctors make the BEST decision and that Sawyer continues to fight. I tell him everyday how many people are praying for him and how much everyone loves him. 


Sunday, May 12, 2013

I hate this part right here...

These past four days have probably been the hardest days of my whole entire life. When we received the diagnosis back in January I really thought that getting all the information would make this process a little bit easier and I could plan for what was going to happen. That could not be farther from the truth; I am not prepared, there are still so many unanswered questions, and I have never felt more frustrated in my whole entire life. I am not sure how long this post will be, but I am in desperate need of writing because my feelings are overwhelming. I apologize for the rawness of my emotions, but I am really struggling.

Thursday and Friday (May 9 and 10) - These two days were rough for both Josh and I. I had Sawyer via c-section and then he was whisked away. They took me to the NICU to see him once, but other than that I was in my hospital room. When they brought him by before transporting him to Egleston I was able to hold him, thank God. I think this has really helped me get by lately. Josh was torn because he wanted to be with me as I healed, but he also wanted to be with our son and he had to chose one over the other. He did come back and spend the nights with me in the hospital. Friday I was finally released (I say finally but really it was super quick). I was able to go see my baby that night and then we headed to our hotel. 

Saturday May 11 - We rested in the hotel, but headed to the hospital as soon as we could to see Sawyer. We came back and forth a few times to rest and have me put my feet up but we tried to see Sawyer as much as possible. We got some cute pictures and were able to tell him all about his family and how much we loved him.

Sunday May 12 - Well, this was my first Mother's Day, and it was so hard. I just wanted to scoop my baby up and snuggle and love him, but I couldn't. Josh gave me a gift he had picked out for Sawyer and we had lunch with my parents and brother. We also gave my mom and his mom a picture frame for some pictures of Sawyer. Sawyer got pretty upset a few times today and had to have some sedation medicine so he was kind of out of it :/ I am hoping he opens his eyes tomorrow so he can look at Josh and I.  We also met with the Fellow Cardiologist to discuss what tomorrow would hold and it didn't go as I expected.

He said that they would try weaning Sawyer off the ventilator to see how he does, and they may remove the tube if he does well enough. He is doing really well, but usually when he is on his stomach. Their ideal goal would be to send him home to get bigger before the surgery if at all possible. Josh and I don't think this is possible because he doesn't tolerate laying on his back for very long at all. The pressure on his lungs from the pulmonary arteries is so intense and he really struggles. Right now he lays on his tummy all day and is only on his back for one hour at a time, two separate times in 24 hours. We think this may be reason for them to do a surgery earlier than later but we won't be getting the answer to this tomorrow. It is kind of a "wait and see" process (another stupid phrase that also means "it depends"). After we talked to Dr. Nicholson (fellow cardiologist) we told Sawyer goodnight and headed out to update my parents. As soon as we left I literally felt like I was going to vomit.

We have so many decisions to make. Do we keep staying in a hotel, and how do we pay for that? Does Josh go back to work or does he keep using his little remaining time? How long will Sawyer be at the hospital? How are we going to make all this work? We are going to do whatever possible for our sweet baby, but it is so tough. I want to pick him up. I want to hold him. I want to be able to nurse. I want to be able to give him kisses on his sweet little lips. There is something that a lot of people don't understand about the ventilator. He has a tube in his mouth, and when he cries there is no sound. You can see him getting upset but you can't hear any cries at all and it is one of the most terrible things I have ever experienced. I can't even pick my baby up to comfort him. As I write these words I am sobbing. I am so frustrated and pissed off. This is not how it should be at all and I want to be home with my new baby doing all of the 'newborn' things but I am not. I haven't given my baby a bath, haven't changed his diaper, haven't given him a bottle, nothing. My heart hurts so bad and I want all of this to just go away. I wish I could trade places with him but I can't. I don't understand why this is happening and I feel like I am losing strength. 

I hope he knows how much his mommy and daddy love him. He is such a fighter and I know he will pull through all of this. I know that God has a plan, I do. I am struggling to hold on to His promises. I wish I could help people understand what I am going through but I can't. I feel like a terrible mom for not being by my baby's side 24/7. I am not posting this as a woe is me, but I have to get these feelings out. I have to write them down and not keep them inside. 

God has blessed me with a wonderful husband. I love him so much and am so thankful for all he has done throughout this situation we are in. He is taking such great care of me making sure I heal so I can be there for our baby. My parents and in-laws and just my whole family are such a blessing as well. They have been a great support for both of us throughout everything. I pray that God gives me the strength to get through these days and to hold on. Sawyer needs me to be strong like he is so we can get to the other side. 

I apologize for all the negativity. Please pray for Josh and I throughout these next few days and that we can start to get some answers and timelines for surgery. We are so thankful for the support from everyone. I know I say it a lot but it really does mean so much. It is one of the things helping us get through.


Friday, May 10, 2013

how can you ever really prepare?

   What a week this has been! I wanted to write a post about my birthing story so everyone knows kind of how it happened. This post will be relatively long but I want to make sure I don't forget anything and writing has really been helping me with dealing with my emotions.

   We scheduled the induction check-in for 9 PM Tuesday at my last appointment with Dr. Pohl. Josh took the day off so we could run some errands and get the house ready for baby! We had instructions to call at 8 PM to see if the bed was ready and if we could still arrive at 9. I thought 8 would never arrive! I called and was told that they were full and were trying to get me a room so they would have to call me back with a time :/ talk about a long wait! Josh and I stayed at home for a little bit, but the car was already packed and I was antsy. We went to Target to get some last minute things and then headed to Dunkin Donuts and McDonalds (one for donut holes, the other for a mango smoothie!). They finally called at 10:15 and said we could come in at 11. 

   Once we arrived, they got me all hooked up and asked a bunch of questions. They also gave me the cervadil which was going to stay in for 12 hours and help soften my cervix. They had to order this from the pharmacy and it took until about 12:30 AM to get it all done. This meant that I would at least be waiting until 12:30 PM the next day. Cervadil doesn't put you in to labor, so to speak, but I actually started having contractions when I walked in the hospital door (funny timing) and cervadil certainly helped intensify those. I had two doses of Fentanyl to help me sleep and when I got up Wednesday morning the labor pains had set in full force. Back labor is no joke! I tried moving around to try and get comfortable but it just wasn't working. Dr. Pohl came in around 10 AM to see how things were going and I let him know how uncomfortable my contractions were. He suggested I get the epidural BEFORE he broke my water. He was planning on breaking my water at 12:30 when the cervadil could be removed. I went ahead and got the epidural and waited for Dr. Pohl to come back - thank God for epidurals because I felt like a whole new person! I started to realize that it was only taking effect on the right side of my body, and I mentioned it to the nurses but they said it could take a while to go all over. Dr. Pohl came in the room and broke my water (remember how they told me I had extra fluid - they weren't kidding!) and about 30 minutes later the contractions were so intense on my left side I was crying from the pain. I told my cousin and best friend (who were visiting) to PLEASE go get the nurse or someone. The anesthesiologist came in and told me he could try to move it around but he really thought a whole new epidural would be better, so we went ahead with that and it worked wonders!
   After the epidural I felt much better and had some visitors and then I was able to take a nap. At 5 PM I felt some pressure so I had the nurse check me and I was at 4 cm, I had been at 2 cm almost since the time I was checked-in. This is also when they started the pitocin. I took another nap after that and woke up at 7 because Dr. Pohl had come to check me again and I had jumped to 9 cm! I was thrilled because I seriously thought the baby was NEVER going to make his grand entrance... Luckily, that was quite a bit of progress and Dr. Pohl said he would come back at 9 to check again. At some point they gave me a button to increase the epidural at my own pace (yay!) and I was using that when I felt more pressure or it was becoming uncomfortable. When he checked me at 9 I was still 9 cm. He told me a story of one mom that stayed at 9 for EIGHT HOURS and then finally delivered, but obviously that would not be the case for me. He did say he would come back in 2 hours to try and let my body progress to 10 cm. Around 10:30 I felt immense pressure and told my nurse to call Dr. Pohl. He came in and checked me and I was still at 9 cm :( He wanted me to try pushing to see if that would help dilate the rest of the way and get the baby's head lower. I pushed 4 or 5 times over 10 minutes but it just wasn't working. Dr. Pohl seemed upset but recommended a c-section, he knew how much I had really wanted to delivery vaginally. He told me that it just wasn't going to work at all. I had already come to peace with the decision of a c-section because I had a feeling it would happen that way all along regardless.
    I was prepped and taken back for the c-section in a matter of 30 minutes. When we got in to the operating room there were about 14 people - some for me and a lot for the baby. They had upped my dosage of the epidural and it gave me a bad case of the shakes. My arms were practically jumping off the tables and it didn't help I was so nervous. I don't know how long the c-section lasted but it felt like an eternity. One of my fears from the beginning was that the baby would be born and wouldn't be crying, but when they pulled Sawyer out he let out a few good cries :) He was also able to breath on his own before they had to intubate him, breathing was just making him too tired. He was born at 12:09 AM on May 9, 2013 weighing in at 8 pounds and 21 & 3/4 inches long! After I went to the recovery room for the mandated 2 hours I was able to go to the NICU around 3 AM to see my precious baby. I only got to stay for a few minutes because I could hardly hold my eyes open at all. I was able to go back to the room at 3:30 AM and rest off an on for the night. My mom and dad went home to sleep but came back the next morning. At 8 AM I text my mom to get a fruit bowl for me (apparently that is what I was craving). Dr. Pohl came in to check and see how I was doing. He told me that it was so much better for me to have a c-section because the baby's head was too big and would have probably just gotten stuck.
First picture of my sweet baby!

We then found out he would be going to Egleston and had our parents and siblings rush here because they had not been able to see him yet and we didn't know what would happen at Egleston. I was a mess and wanted to make sure I could see my baby before he left, especially since I didn't know when I would see him again. That was the hardest part about the c-section decision was that I would bed-ridden for longer than if I had him vaginally. My aunt and the NICU staff surprised me because they brought him to the room and told me I would be able to hold him! It was the best moment and best feeling ever! I hated saying goodbye to my sweet baby :( Josh stayed for a few minutes and we actually heard the ambulance taking him from the hospital. He and his parents and sisters then left to go be with Sawyer and get some updates and my parents stayed here with me.
I am so in love with this sweet baby!

First family picture :) PERFECTION
Whew, that was a lot! I just wanted to get everything down so I don't forget and also wanted to share it with you all. Sawyer is our gift from God and no matter how frustrated or upset I get, I have to remember that God loves all of us and has already wrapped his hands around us. I will update more about my time in the hospital and continue to keep you all posted on how Sawyer is doing. I am blown AWAY by all the people praying for us and following our story. I hope we are able to bless you all in the ways you have blessed us. I am so thankful that God has placed you all in our lives for support, because that is what we need most right now.

Joshua 1:9 -- "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.


Monday, May 6, 2013

this is it...

   Tomorrow I will be heading in to the hospital to start the process of induction. I have spent the last few days just enjoying time with Josh, before we add our new addition to the family, and also reminiscing on the whole pregnancy. Our lives are about to change forever, and I still don't think I am ready for it!
   When we first found out we were pregnant back in September we were both so excited! We immediately told our parents, but waited for our first appointment to tell the rest of our families and also our friends. I really wanted to tell everyone as soon as the test was positive, but I also wanted to have our first appointment just so we could "see" that everything was okay and we were in fact having a baby! The first five months started out pretty typical (based on what I had seen in the movies/TV/books) and I had terrible morning sickness. It was so bad I could hardly even eat and had to get a prescription from my doctor to help with the nausea. I remember people saying "it just means you have a healthy pregnancy!" - looking back I wish that was the truth. What I wouldn't trade to go back to the time when my only worry was the fact that I was so sick and couldn't eat nor keep anything down. We found out on December 4 that we were having a little boy! I had secretly been hoping for a girl, but was just as excited that we would be welcoming a son in to the world in a few more months. Our feelings of joy and excitement were quickly set aside by the feelings of fear and worry from our appointment on January 3 when our lives and the pregnancy changed forever.
   I remember heading in to the anatomy scan for our 20 week appointment after having several nightmares the week before that something was wrong. To be honest, I can't even remember what I dreamed was wrong, but I know they woke me up every night for five or so nights before the appointment. We headed in for the appointment with feelings of excitement, and left feeling like we had been punched in the face. I am thankful that God chose Josh and I to be together because his sense of calmness and reasoning is really what got me through the next few weeks until we really found out what was going on. No one ever wants to hear that anything is wrong with their child, and it certainly doesn't feel good when the doctor says that they don't even really know what is going on and sends you to a specialist. I started looking at everything differently. What if I had not complained about being so tired? What if I had just sucked up that I was sick and stopped complaining? I know none of this was my fault, or anyone else, but it is such a natural feeling to try and blame yourself. I did get some reassurance from the cardiologist who told us that heart conditions like this usually develop in the first few WEEKS of pregnancy, so there really was NOTHING I could have done. I didn't even know I was pregnant when this was all happening. 
   As the months went on we were faced with more trials and it brought us closer together all the while I felt like I was falling apart. I am thankful for my relationship with Jesus Christ, because without my faith I honestly don't know where I would be today. Through these trials, He has never left our side and has continued to bless us in ways that we couldn't have imagined. The month of April was pretty 'relaxing' compared to the previous months, but as the month came to an end the feelings and emotions associated with the birth and what we are facing afterwards started to resurface. Pregnancy and birth and a new baby all bring fears of their own, but once you add in a lot of unknowns it really amps up the fears, at least that is what it seems like to me. I am so excited to meet baby M but I am so fearful of what is to come after he is born, because we really just don't know. We know that he will need immediate attention after his is born to stabilize him and also to figure out what all is going on, but other than that we don't really know what to expect. A lot of people have been saying "don't worry, everything is going to be okay", but in all reality that is not comforting at all. I am trusting that whatever happens is all in God's hands and a part of His plan, but that does not mean everything is just going to be okay after he is born.
   We are heading to the hospital tomorrow evening and baby M should make his grand entrance sometime on Wednesday. I know we have a lot of people that are excited to see him and hear his name, but we won't be posting anything until Josh and I are able to see him and also let our families know that he is here and also what all is going on. I promise we will update you once we are able to - just understand it may not be right away! We are so thankful for all of your prayers throughout this journey, and it is far from over. God has taken care of us up until now, and I have no doubt he will be with us tomorrow and the next days following baby M's birth!

Please pray that the induction process goes smoothly and does not have to end in a c-section. 
Please pray for our nerves throughout the next few days.
Please pray for all of the doctors and nurses involved in the delivery and after care of baby M.

Excited to be able to introduce our baby boy to the world!