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. 

Hooray!!!

I have been looking for the feature that allows me to e-mail my posts to our family. I think I found it! A few people have asked if I could e-mail the posts like the ones from Hayes and Hayne. If you are receiving this post as an e-mail it is because I have added you as one of our 10 e-mail contacts to receive updates. If you prefer not to receive updates via e-mail, please just e-mail me and I will be glad to remove you. I understand how full our inboxes can get and will not have any hard feelings if you would rather just check our blog at your convenience.

Putting, Planning, Peeking, & Praying

Things have been very busy around the Wilson house these past couple of weeks. Last week Harlie attended golf camp at Furman. While Harlie improved her skills on the course I worked on lesson plans for the upcoming school year. Each day we enjoyed lunch with my sweet daddy afterward.
On Tuesday night we had another doctor's appointment and then we went to Baby Impressions for a fun ultrasound to see Baby Mac. At the doctor's office I was reading through my records that I am taking to MUSC tomorrow and noticed that they had my umbilical cord listed as "abnormal." I asked the doctor about this and he said that this is fairly common in conjunction with heart and lung defects. he also said that the only changes they would make in my care is more intensive growth monitoring, which they are already doing now with Mac's heart.
After our doctor's appointment we were able to go straight to Baby Impressions. When we go for ultrasounds at the doctor's office we spend hours looking at his heart beating and measuring everything to be sure that growth is on target. Sometimes our ultrasound ladies will try to sneak a peek at his face before we wrap up. Usually our little guy has his hands covering his face or is tucked in behind the cord. This means no good pictures of our precious little boy's face. After talking with the lady who did our ultrasound about this she worked very hard to catch some beautiful photos of his face. I am so pleased with the images she got. The only bad thing about getting such beautiful images is that they make me long to hold him in my arms even more. I am so ready to bring him home. I know that I must be patient and wait for him to be ready, but it is so difficult to see him and not be able to hold him.
 Tomorrow is our first trip to MUSC. We have an appointment to do another ultrasound to measure and evaluate growth. We will also have a pediatric cardiologist determining our next steps. After the ultrasound we will meet with the pediatric cardiologist to find out what they are seeing and hopefully get more information about when we will need to go back down. We will then meet with the ob doctors down there to establish me as a patient to make things easier when I go back for delivery. After our doctor's appointments we will be meeting with an angel from CrossBridge Family Ministries. This ministry is a ministry that provides the needs of families with children at MUSC. They will be helping our family with housing while we are in Charleston. I am not sure exactly what all this will entail, but it is a huge relief to know that they are there to help us. We look forward to how we will be able to help this ministry in the future.
 We are continuing to pray for healing. I believe that our God can do anything. He created this heart and he knows what it needs better than anyone else. I am anxious about our visit and want to hear what these doctors have to say.
Vince and I both have a peace about this situation that could only come from the Lord. We are also comforted by the many prayers of family, friends, and even strangers. It is a wonderful feeling when I open the mailbox and find a card, note, or letter from someone I don't even know who is lifting Mac and our family up in prayer.
 I will be posting an update tomorrow or Wednesday to share more information about how our visit goes. Thank you for your prayers. We feel them and they are a most precious gift.

He is already sticking his tongue out at us! Boy are we in trouble.

I love this beautiful smile.

The hands are up guarding his face in this one.

 

Look at that foot up there in his face.

That sweet little hand covering his face again!

This little smirk makes me laugh!

Amazing Accomplishments

While our world seems to have been spinning around our preparations for Baby Mac, I wanted to devote a special post to the amazing accomplishments of our girl! On Tuesday Harlie had her second grade awards day. We were extremely proud of all of the awards she received. At the grade level awards ceremony she received All A Honor Roll, the award for highest Math average in her class, Library, and P.E. awards.

 

 

When we got to the classroom she  received the award for earning more Scholastic reading points than anyone else. This award included a $10 gift card for Barnes & Noble. She was also voted "Smartest Kid in the Class" by her peers. It is hard to believe that next year she will be going into third grade.  

 

 

The icing on the cake was the letter that we received in the mail when we arrived home from school on Thursday afternoon. This letter was from the district office and stated that Harlie qualified for the ASD1 Gifted and Talented program! This means that throughout the rest of her elementary school years she will be able to participate in additional enrichment activities and field trips. We are so very proud of our girl!

 
 

Today we took her shopping and she was able to spend her report card/birthday money on a big item that she has been wanting for some time. She chose to purchase a pink razor scooter and a new set of knee and elbow pads. She also got a new Iron Patriot action figure.   

  

Heart Update

Tonight we are continuing to praise the Lord for the blessings in this situation. We met with the pediatric cardiologist, Dr. Horne. He looked at ultrasound images to try and distinguish what is actually taking place in our sweet boys little heart. After looking at every angle possible he determined that Mac has “Double Outlet Right Ventricle with Transposition of the Great Arteries.”  He said that the left side of Mac’s heart is significantly smaller, but that it is considered within normal range at this time. He said that as long as that side continues to grow and strengthen and the Mitral Valve allows enough blood flow through we will should be able to fix this with one surgery. PRAISE THE LORD!!!

We are currently planning to watch the growth of the left side and plan accordingly. Our current plan is to visit MUSC in 4 weeks to meet with doctors down there. We will then see Dr. Horne again in 8 weeks then plan to induce around week 39 at MUSC. He said that they usually perform this procedure within the first week. We asked about recovery time and he said to plan for 2 weeks. That would mean that we could be back in Greenville within 3 weeks!!! AGAIN PAISE THE LORD!!!

If the left side does not continue to grow we are facing an even more serious series of surgeries. We ask that you pray specifically that the left side of Mac’s heart grow and stay within the normal range or that God heal him completely in the womb. We know that ALL THINGS are possible with God.