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.



  1. To read your post just makes my heart hurt. As bad as Eli got, he was never put on ECMO. I can't imagine the pain you were feeling inside. Please know I will continue to pray for Sawyer. My two older girls and I said a special prayer for him last night. We have spread the word on your sweet baby as well. He has a lot of prayer warriors in ME Indiana! I will be checking throughout the day for updates on FB. Lots of love and prayers being sent to you and Josh and of course, for Sawyer.

  2. His mercies are new every morning. Praying for you Josh and Sawyer. I cried out begging God to save your baby. I know He has a plan. Stand firm in your faith. We love your family.
    Darlene and Rick Carlisle

    1. "Trust in the Lord with all your heart
      and lean not on your own understanding;
      in all your ways submit to him,
      and he will make your paths straight"
      Remain strong and courageous in your faith. He never abandons you even in the darkest hour. We continue to pray for your family

  3. The Norton Family (including Matty Matt) have been in prayer for you and your family ... for your sweet baby ... for the doctors and nurses ... and for God's will.

    We love you!

  4. I cry for you and Josh, but know that the Lord does hear you when you call to Him. He knows your pain better than any of us can and He does see. I know He's wrapping His arms around you both right now and Sawyer, even if it's hard to see. I read something in "Streams of the Desert" this morning and felt like it was for you both.

    "They were at their wits' end. Then they cried out to the Lord in their trouble, and he brought them out of their distress." Ps. 107:27-28

    "Are you standing at 'Wits' End Corner,'
    Christian, with troubled brow?
    Are you thinking of what is before you,
    And all you are bearing now?
    Does all the world seem against you,
    And you in the battle alone?
    Remember at 'Wits' End Corner'
    Is just where God's power is shown.

    Are you standing at 'Wits End Corner,"
    Blinded with wearying pain,
    Feeling you cannot endure it,
    You cannot bear the strain,
    Bruised through the constant suffering,
    Dizzy, and dazed and numb?
    Remember - at 'Wits' End Corner'
    Is where Jesus loves to come.

    Are you standing at 'Wits End Corner'?
    Your work before you spread,
    All lying begun, unfinished,
    And pressing on heart and head,
    Longing for strength to do it,
    Stretching out trembling hands?
    Remember - at 'Wits End Corner'
    The Burden-Bearer stands.

    Are you standing at 'Wits' End Corner'?
    Then you're just in the very spot
    To learn the wondrous resources
    Of Him who fails you not:
    No doubt to a brighter pathway
    Your footsteps will soon be moved,
    But only at 'Wits' End Corner'
    Is the 'God who is able' proved."

    ~ Antoinette Wilson

    And today in Day 4 of "Draw the Circle" by Mark Batterson, the verse was, "This happened so that the works of God might be displayed in him." John 9:3

  5. I know when we were in NICU and CICU with our son the prayers lifted up were many, I also know the strength it takes to endure the *ICU's. As strange as it sounds and as much as I didn't follow the advice I am about to give you, take care of yourselves. Sawyer is in God's hands. We will continue to pray for guidance for the care giver's which I know are in the multitudes for knowledge and courage for for your family. When our son was in the different icu's I drew name tags that hung on his ventilators, or issolets, or cribs. It gave me something to do to keep my hands busy in between pumpings. Knowing there is nothing I can say to ease your suffering and mixture of feelings you and Josh are experiencing know that there is a world of prayer going up in your families name and that the Lord knows every struggle every set back and every glorious achievement you and little Sawyer will make in the coming weeks. lisa (a friend of the Davenports from Pine Lake)