The past month has been a roller coaster ride for our family. We celebrated 6 months and 16 pounds with an open heart surgery! When we do things, we do them BIG! As we have walked through this journey with Mac, I have learned so much about God, my family, and myself. I continue each day to learn and grow from this experience, and I am so thankful that God saw fit to place Mac with our family. This entry in our blog will probably be longer than most. I have a lot to share that has happened in such a short period of time.
On the Wednesday before surgery our family loaded up the car and headed for Charleston. We were all anxious to see the surgery completed and begin to move toward a more normal way of life. The trip down was a long one. Mac slept for a while, but then wanted to be out of his car seat and playing for the remainder of the trip. Thankfully he has the most amazing big sister who was great entertainment for the long ride.
When we arrived in Charleston we were greeted by our wonderful friends at CrossBridge. We were able to stay at the same house we were in during our stay in September. It was a comfort to be back in the same CrossBridge house once again. I never dreamed that Charleston would feel like home, but now it does.
We had to be at the hospital Thursday morning for Mac's preop appointment that lasted all day long. Harlie spent the day with Grannie and Papa at their hotel. After a long day of questions, tests, and waiting, we finally got to speak with Mac's surgeon. That was when he told us that he was 95% sure that we were going single ventricle. This was not what we wanted to hear, but we knew that our prayers were for the best decision for Mac's care and not what we wanted. This surgery meant that Mac's heart would become a single pump instead of a double. This isn't a bad thing. It just means that Mac's heart would function differently than ours.
The morning of surgery we had to be at the hospital early. When we arrived we were greeted by one of our awesome pastors. Pastor Danny was able to pray with us before we had to take Mac back to the holding area. It is there that the anesthesiologists have to pry children from anxious mother's arms. I reluctantly released him, only comforted by the fact that I was not releasing him to the arms of some anesthesiologist, but into the arms of God. I have reminded myself a million times that he is not mine. Mac belongs to God. The only way I was able to hand him over that morning was to know that I was giving him back to Him.
The morning of surgery we had to be at the hospital early. When we arrived we were greeted by one of our awesome pastors. Pastor Danny was able to pray with us before we had to take Mac back to the holding area. It is there that the anesthesiologists have to pry children from anxious mother's arms. I reluctantly released him, only comforted by the fact that I was not releasing him to the arms of some anesthesiologist, but into the arms of God. I have reminded myself a million times that he is not mine. Mac belongs to God. The only way I was able to hand him over that morning was to know that I was giving him back to Him.
We were given a pager from the hospital for updates. The operating room sends updates to families every hour. Each hour we received our message and then waited what seemed like an eternity for the next one. Fortunately for us we had lots of entertainment. Those of you who know my family know that there is never a dull moment when my daddy is around. I am so thankful that he was able to be there to keep things light. I can't imagine sitting there for hours in silence waiting.
Mac's surgeon, Dr. Bradley, came to speak with us after the surgery was complete. He said that everything had gone great in the OR and that we would be able to see him soon. He said that as he had suspected, there was no way to do a full repair of Mac's heart. He told us that we will now have one more surgery in a few years and then his surgical plan will be complete. Mac now has half of his blood flow from the body going directly to the lungs and the other half is going into his heart. When the final surgery takes place, all of his blood will bypass his heart and go straight to his lungs to be oxygenated. When we asked about a timeline for the second surgery, Dr. Bradley said that we will plan to have his second surgery when he is 30 - 35 pounds. He also told me not to "overfeed" him. I guess word has gotten around about my ability to make people I love gain weight. ;)
After surgery, Mac was sent to PCICU to recover. We were fortunate enough to be placed in one of the rooms on the back wall this time instead of along the walls as you walk in. This made it possible for Harlie to come in and stay a little longer than she has been able to in the past. It was the most wonderful feeling in the world to have my whole little family together in the same room again after surgery. Over the next few days we enjoyed watching the pumps disappear from his bedside. Any heart family knows that this means that you are getting closer to getting out of PCICU and moved to the recovery floor (8D). On Sunday night I was finally able to hold him in my arms once again. It had only been two days, but it felt like an eternity.
The following day we were moved from PCICU to 8D. When we arrived on 8D we were greeted by many familiar faces and friendly hugs. Mac was back on 8D where he had spent most of his time before his first surgery. We were able to take him out of the room and visit the atrium to play and even go outside.
On Tuesday morning the doctors came in for rounds. The doctor for the week was one that we had not met before. He told us that if we really pushed, he would probably let us go home that day, but if we wanted to stay one more night, he would rather us do that. I wanted to get out of there, but I also knew that we were facing a 4 hour drive with a 6 month old baby who had just had open heart surgery FOUR days prior. We told the doctor that we were fine with staying one more night and that we would leave the next day. We were also told by the cardiology team that after his healing time Mac will be a "normal" little boy. We no longer obsess over food, weight gain, and sats. We even had to turn in our scale and pulse oximeter. That has been very difficult. After spending 6 weeks in Charleston, being trained to track and document every move Mac makes, they tell me to stop cold turkey. I still feel like he is the same boy that needs to be followed so closely, but they assure me that he is not.
The following morning we were packed and ready when the doctors did rounds. We signed the discharge paperwork and left the hospital FIVE days post op!!! This is two days faster than their most optimistic goal of 7 - 10 days. We were able to make it home in time to surprise Harlie and pick her up from horseback riding lessons! I wish I had a picture of the smile on her face when she came around the ring and saw us standing there. It filled my heart with so much joy.
The next day we had an appointment with the cardiologist in Greenville. Two of the MUSC cardiologists had flown up for a clinic there at GHS and we were able to visit with them for a moment before heading to our room to wait. One of our cardiologists that had been with us for an unusually long 2 week stretch on 8D was amazed at how quickly Mac had been able to return home. He kept telling me that he thought we were messing with him. He looked too good to have been just SIX days post op! Of course we all know why Mac looked so good and recovered so well. He had the healing touch of the Father. I always love to see the doctors amazed by his progress. It reminds me that God is in control and that He has His hand on our son. It reminds me that no matter what the doctors may tell us, He decides Mac's future.
During that visit Dr. Horne made the decision to place Mac on a heart monitor for the next 30 days. They removed one of his medications in Charleston and this monitor will be sure that he can discontinue the medication safely. I am always happy to see a medication go, so the 30 days of monitoring are a welcome aggravation to ensure that Mac is safe.
The next week we had a follow up appointment with Dr. Horne. It was at this visit that we found out that there have been some changes in Mac's heart function post op. They are not major concerns, but we are always cautious with any changes. We will have another echocardiogram at his appointment next week to determine if another medication is necessary. Please pray that the changes they saw were just a result of his heart recovering from surgery and that all has returned to normal. We also had a long talk with Dr. Horne about when Mac will be ready to begin attending a day care. After hearing all of the pros and cons, Dr. Horne said it was his recommendation for me to return to work in the fall. This means that we have the all clear for Mac to start going to day care once or twice a week in July to transition. I am so excited about the possibility of returning to the classroom for the 2014-2015 school year. Now the search begins for a new teaching position. While I would love to return to Wren, I am not sure if there will be a place for me there. Please pray that God will open the door and place me where He wants me.
Most importantly, we are celebrating the answers to our prayers for a successful surgery and a speedy recovery. As you pray for our family this month, please thank God for all that He has done. We know that the doctors at MUSC are the best, but we give God all the praise and glory for our answered prayers. Thank you for praying for our family.
Wilson's Surgery Update
Mac's surgeon, Dr. Bradley, came to speak with us after the surgery was complete. He said that everything had gone great in the OR and that we would be able to see him soon. He said that as he had suspected, there was no way to do a full repair of Mac's heart. He told us that we will now have one more surgery in a few years and then his surgical plan will be complete. Mac now has half of his blood flow from the body going directly to the lungs and the other half is going into his heart. When the final surgery takes place, all of his blood will bypass his heart and go straight to his lungs to be oxygenated. When we asked about a timeline for the second surgery, Dr. Bradley said that we will plan to have his second surgery when he is 30 - 35 pounds. He also told me not to "overfeed" him. I guess word has gotten around about my ability to make people I love gain weight. ;)
After surgery, Mac was sent to PCICU to recover. We were fortunate enough to be placed in one of the rooms on the back wall this time instead of along the walls as you walk in. This made it possible for Harlie to come in and stay a little longer than she has been able to in the past. It was the most wonderful feeling in the world to have my whole little family together in the same room again after surgery. Over the next few days we enjoyed watching the pumps disappear from his bedside. Any heart family knows that this means that you are getting closer to getting out of PCICU and moved to the recovery floor (8D). On Sunday night I was finally able to hold him in my arms once again. It had only been two days, but it felt like an eternity. The following day we were moved from PCICU to 8D. When we arrived on 8D we were greeted by many familiar faces and friendly hugs. Mac was back on 8D where he had spent most of his time before his first surgery. We were able to take him out of the room and visit the atrium to play and even go outside.
On Tuesday morning the doctors came in for rounds. The doctor for the week was one that we had not met before. He told us that if we really pushed, he would probably let us go home that day, but if we wanted to stay one more night, he would rather us do that. I wanted to get out of there, but I also knew that we were facing a 4 hour drive with a 6 month old baby who had just had open heart surgery FOUR days prior. We told the doctor that we were fine with staying one more night and that we would leave the next day. We were also told by the cardiology team that after his healing time Mac will be a "normal" little boy. We no longer obsess over food, weight gain, and sats. We even had to turn in our scale and pulse oximeter. That has been very difficult. After spending 6 weeks in Charleston, being trained to track and document every move Mac makes, they tell me to stop cold turkey. I still feel like he is the same boy that needs to be followed so closely, but they assure me that he is not.
The following morning we were packed and ready when the doctors did rounds. We signed the discharge paperwork and left the hospital FIVE days post op!!! This is two days faster than their most optimistic goal of 7 - 10 days. We were able to make it home in time to surprise Harlie and pick her up from horseback riding lessons! I wish I had a picture of the smile on her face when she came around the ring and saw us standing there. It filled my heart with so much joy.
 |
| The picture on the right was taken 5 days after the one on the left. God has truly blessed our little Miracle Mac! |
During that visit Dr. Horne made the decision to place Mac on a heart monitor for the next 30 days. They removed one of his medications in Charleston and this monitor will be sure that he can discontinue the medication safely. I am always happy to see a medication go, so the 30 days of monitoring are a welcome aggravation to ensure that Mac is safe.
The next week we had a follow up appointment with Dr. Horne. It was at this visit that we found out that there have been some changes in Mac's heart function post op. They are not major concerns, but we are always cautious with any changes. We will have another echocardiogram at his appointment next week to determine if another medication is necessary. Please pray that the changes they saw were just a result of his heart recovering from surgery and that all has returned to normal. We also had a long talk with Dr. Horne about when Mac will be ready to begin attending a day care. After hearing all of the pros and cons, Dr. Horne said it was his recommendation for me to return to work in the fall. This means that we have the all clear for Mac to start going to day care once or twice a week in July to transition. I am so excited about the possibility of returning to the classroom for the 2014-2015 school year. Now the search begins for a new teaching position. While I would love to return to Wren, I am not sure if there will be a place for me there. Please pray that God will open the door and place me where He wants me.
Most importantly, we are celebrating the answers to our prayers for a successful surgery and a speedy recovery. As you pray for our family this month, please thank God for all that He has done. We know that the doctors at MUSC are the best, but we give God all the praise and glory for our answered prayers. Thank you for praying for our family.
Wilson's Surgery Update
Just weeks before surgery, Mac was chosen to have a "friend" undergo an open heart surgery of his own. An organization on Facebook called BooBoo Buddies takes stuffed animals and gives them a zipper to match their child. When Mac was confirmed to receive a buddy we thought long and hard about which animal should have surgery. After Mac was born, Harlie's friend Milla gave him a special bear named Wilson. After much discussion it was decided that this special bear should be the buddy to have surgery. Mac gave Wilson extra love and we sent him off the Monday before Mac's surgery on Friday. This week we finally got a picture and word from BooBoo Buddies that Wilson came through his surgery strong and healthy, just like Mac! 
