Mac's Milestones

Mac is growing so fast! He is enjoying trying new foods and now feels that every meal for us means solids for him as well. His favorite food so far is bananas. He also likes sweet potatoes and oatmeal. Green beans and rice cereal were not hits. He is becoming more and more vocal. I am just waiting for him to utter that first, "Mama!" any day... ;)

This week he rolled over for the first time. He now rolls to his tummy and gets mad because he is there. He forgets that he can just roll back onto his back. Each of these accomplishments is a major celebration for our family. We are so thankful for each and every milestone. The next one on the list is Mac's half birthday! One week from tomorrow he will be 6 months old! I cannot believe it.

In less than two weeks we will be back at MUSC awaiting surgery! I cannot believe that the time has already come! Mac's surgery date is March 7th. This means that we have to be down there on the 6th for his pre-op work up.

We have been anxious to find out what procedure will be done. We have been told by the doctors at MUSC that the goal is do to a full repair, but they are not sure exactly what they will find when they get inside of his heart. Yesterday a letter arrived from our insurance company. This letter was to let us know that the hospital had notified them of Mac's upcoming procedure. The notes on the letter said that he is scheduled for, "Repair of double outlet right ventricle with intraventricular tunnel repair!" This sounds like they are pretty confident that a full repair surgery is possible! The other procedure is called the Bi-directional Glenn. I am so excited at this new hope of a full repair! We understand that there is still a chance that when they go in the Glenn may be the final decision, but there is still a strong chance that he will get a FULL REPAIR!!!! The full repair means no more surgeries and no restrictions! He would be "fixed!" Please help us pray that this procedure will be possible.


Harlie is doing fantastic in school. She has her 3rd grade play this Tuesday night. We are so proud that she has a solo and a speaking part! Not only is she an excellent student, but she is an awesome big sister! Mac loves to watch her sing and dance. He lights up whenever she is around. We are so proud of this amazing little lady. She brings so much joy into our home. Please keep her in your prayers as she prepares for some quality time with G&P while Mommy and Daddy are in Charleston. She is such a trooper!

Harlie and Vince were able to enjoy an evening of fun this Friday at the WES Daddy/Daughter Dance. She was absolutely breathtaking in her Mardi Gras attire!

As you pray for our family, please pray for the following things...

• Safe travels for our family to and from Charleston over the next few weeks.
• Mac's surgeon and every other person who is in ANY way connected to this procedure to be anointed by the Holy Spirit.
• That ALL decisions made in Mac's care are best for Mac.
• Strength for Mac's little body as he fights back after surgery.
• Peace for all of our family. (We are all anxious about this procedure.)
• Physical, mental, and emotional strength for Grannie & Papa as they step back into a parenting role for the next couple of weeks while we are in Charleston.
• Strength for the BEST BIG SIS EVER! This will be hard on her because she is going to be away from us again.

Thank you to each of you who pray for our family. I know it may not feel like a big thing to you, but it is the greatest gift you can give to our family. Many of your prayers have already been answered and we give all praise and glory to God for those blessings.

Hearts for Mac

On Friday when I went to pick Harlie up from school, I was greeted at the door with smiling faces that held wonderful surprises for our family. They led me to the cafeteria. I was reduced to tears when I rounded the corner to see photographs of our family displayed above each grade level. The entire wall was decorated for Hearts for Mac! Words cannot express the love and support I felt at that moment.
My wonderful Wren family had planned a fundraiser to help our family with Mac's medical expenses. Starting tomorrow, students will have the opportunity to purchase hearts to be decorated and placed on the wall with their grade level. Many times I have assisted with fundraisers for various causes or other families in our community. I never dreamed that the love would be returned to our family in this situation. We are so blessed to be a part of this school and community. Thank you Wren family.

Click below to view the Hearts for Mac video.
Miracle Mac's Video

Mac's Heart Cath

Last Wednesday morning we arrived at the hospital at 6:00am for Mac's first heart catheterization. I was nervous for many reasons. First, my son was about to undergo a procedure where catheter lines were run directly into his heart to take measurements and images of his anatomy for diagnostic purposes. Second, there was a chance that the doctors could decide that he needed stints or a balloon procedure depending on what they saw. Third, this procedure brought us one step closer to Mac's first open heart surgery.
They took him from my arms at 7:30 and told me we would hear from them every hour. We waited anxiously for our first update. The first call told us that he was sedated and had an iv in each hand. They told us that they were beginning his echo. The second hour mark let us know that his echo was complete, they were inserting the catheter lines, and they would begin with measuring pressures and oxygen saturations. Our third update said that the lines were in place and they were taking images of his heart.  The fourth call said that he was finished and we would be able to see him in 30 minutes. As soon as we got the OK to return we rushed down to his room.
When we walked through the door, I heard the cry I hate most. If you have ever had to have a breathing tube you probably remember the raw feeling that the tube causes. For an infant, this horrible tube leaves their cry sounding deep and raspy. I knew, even though it sounded nothing like him, that the cry filling the same day room was the sound of my precious boy. We rushed to his side and tried to calm him. He was afraid and in pain. Vince had the horrible job of holding his leg still (to prevent the cath holes from bleeding) for the next 30 minutes while our precious boy laid there confused and in pain crying out for us to hold him.
As soon as the nurse gave the OK, Mac was in my arms. We had him, but this boy was not the one we brought in that morning. He was scared, in pain, confused, and having trouble breathing. For the next 4 hours we held him. Trying to hold him still. Trying to keep him calm. Trying to bring him comfort. During this time he would sleep for a few minutes and then wake screaming out in pain.
When Mac is at his best his oxygen saturations stay in the range of 75 - 85. This is much lower than a "healthy" child. His heart rate is usually around 135. During this recovery time his saturations were not rising above 70. When he would cry out his sats would drop down into the 50's and his heart rate would spike over 200. They gave me an oxygen mask to keep blowing on him while he rested, but that didn't do much to help. When the nurse started looking nervous, I began to get even more anxious. I asked when they would make the decision to do something. They told me that they would wait until closer to time to go home to make a decision and give him a chance to pull out of this on his own. Just before 4:00 pm they made the decision to admit him for the night.
When we arrived on 8D, we were greeted by many familiar faces. The first of which was Mac's favorite nurse, Mrs. Corrie! It was such a relief to be surrounded by so many wonderful people that we know and love. Mrs. Mary was the next face I saw and she greeted me with a HUGE hug! I am so grateful that God has placed these people in our lives. They are such blessings when we need them most!
Once we were settled in the room, the doctor came in and told us that they thought the reason Mac was having difficulty keeping his sats up was because he had too much fluid. This was such a reasonable explanation. He looked so swollen that I was sure that this was the reason. I was so glad to hear that the fix would be LASIX. We are very familiar with Lasix from our previous trip to MUSC. They started him on Lasix early in the evening. He immediately began to pass the fluid. As he received Lasix throughout the night they were able to wean him off of his oxygen. Around 3:30 when I woke to the horrible sounds of our heat unit (see post on FB) they turned the oxygen off. He maintained his sats and we were able to remove the oxygen tube around 7am.
Around 8am they came in and told us we were going home! We had to go through the discharge paperwork and pack up. We were walking out the doors by 10:30.
With all of that said , we don't have a lot of information in the way of results.
While we were in same day holding him down, the doctor came in to tell us what she saw. She said that his PA band is SUPER tight. This means that he is now ready for his next surgery! It usually takes about a month to get on Dr. Bradley's schedule. We are hoping to hear from MUSC early this week with a date for surgery.
Your next question is, "Are they going to be able to do the repair?"
The answer, "We don't know..."
Honestly, I am really not worrying about which procedure they decide on. We have come to the place in this journey where I understand that this decision is out of my hands. Either way this surgery will require Mac to be placed on the heart lung bypass machine. The surgeon will actually have to stop his heart and open it to repair or bypass. I have been praying for the surgeon and the others involved in making this decision. I am trusting that God is going to guide their decision making. We may not know what that decision is for a few more weeks. As soon as I know I will update you all.
Please continue to pray for all of those involved in the decision making process and the actual procedures ahead.