Stepping Stones

Yesterday was our long awaited trip to MUSC to meet the doctors. We have never been to MUSC so this was quite an adventure. I never realized how difficult it is to navigate the streets of Charleston. There are so many one way streets and “no turn” intersections. I must say that overall I was hoping to get more definitive answers to our questions, but I also know that what I want is not always best.

Our first appointment was with the Pediatric Cardiologist for the ultrasound. They worked quickly because Mac was cooperating and we were able to complete the full ultrasound in 30 minutes. We then waited while the doctors talked. We spoke with the cardiologist who confirmed that Mac does have Double Outlet Right Ventricle with Transposition of the Great Arteries (DORV-TGA). He said however that the size of the left side of Mac’s heart did not seem to be an issue. His concern is that the Mitral Valve may not be large enough to handle the amount of necessary blood flow. He told us that at this time he thinks that the onetime DORV-TGA procedure is still a possibility. He would not say that it was a definite at this time though. He told us that what would happen is that we would have another appointment with our Pediatric Cardiologist here in Greenville in 4 weeks to check his growth. We will then have to wait until we go to MUSC for delivery. Our induction date is scheduled for September 3^rd. This is the Tuesday after Labor Day. The doctor said that after delivery Mac will be placed almost immediately in ICU where they will use his umbilical cord as a port for food, medicine, etc. This means that we will not be able to hold him during the time before surgery. During the first few days they will run more tests and meet to decide on a final plan. He told us though that even with all of the tests and planning they still sometimes have to alter those plans when they open the chest and actually see the heart. As long as we continue as planned with the onetime surgery we will be looking at a minimum of 4 weeks at MUSC. He said we could even be looking at as long as 8 weeks with the onetime procedure. The reason for this is that they have to monitor him through the recovery process and then we have to be sure that he is able to do all of the developmental things necessary to be able to eat. He said that we will just have to wait until he is ready.

We then met with the OB and they basically just walked us through how and when we will be induced. I am glad to have a date to look forward to meeting my sweet baby boy.  We will continue all of our normal doctor visits here in the upstate so we won’t have to go back to MUSC until he is delivered.

All of this information was overwhelming. The thing that we are seeing throughout this process is that if we just WAIT on the Lord, He will guide us with each step. We were talking on the way home last night and compared our journey right now to a path of stepping stones. We feel as though we are walking down this road with no vision as to where we will step next, but each time we pick up our foot to place it on the next stepping stone, He places the stone under our feet. My grandmother cross stitched Proverbs 3:5&6 for me when I was a teenager. This verse is the one I am clinging to most these days. “Trust in the Lord with all your heart, and lean not on your own understanding. In all thy ways acknowledge Him and He will direct your paths.” He is doing just that. Our path isn’t laid out for us as clearly as we would like, but each stepping stone is added with each step we take.

One way that God has blessed our family is through the CrossBridge Ministries. This wonderful ministry helps families like ours. They provide housing nearby and many other services to help families when they are away from home and caring for a baby with special needs. After meeting with the doctors we met with Melissa from CrossBridge to discuss our family’s needs and see how they could help us. We are overwhelmed with the amount of support they provide to their families, which we are now one of… PRAISE THE LORD! We are planning to stay in one of their houses near Mount Pleasant during the times when we cannot stay at the hospital. They will also be helping us in other ways. This is one of those times when I look around and know that God placed that stone under our feet just in the nick of time. We no longer have to worry about the stress of finding affordable housing while we are there for our extended stay. We will also be sharing our housing with other families like us, which I believe will be an additional support system during this time.
 

When we take a step back and look at our situation we cannot help but be overwhelmed with the grace of God. He has provided us each and every thing we have needed up to this point and we know that He will continue to guide our steps and provide for our needs. Thank you to each of you who continue to lift our family up daily in your prayers. We feel them. Thank you to my parents who are helping us with one of our greatest concerns, making sure that Harlie has everything she needs to continue to grow into the amazing young lady she is becoming and continues to feel safe, secure, and loved at times when we are not able to be there. We cannot imagine going through the next few months without all you.

We are blessed to be Mac’s family and we ask that you continue to pray that his heart will either be healed completely or continue to develop in a way that makes the DORV-TGA procedure the best option. Please pray specifically that the Mitral Valve will be able to do its job and we will not have to have any other procedures after this one to insure that Mac can testify of how God healed him and fulfill his purpose in this world.