There's No Place Like Home

Harlie's Wilson Ohana Painting
Harlie painted this in the atrium for patients and their siblings.

I would like to begin by apologizing for taking so long to update our blog. Things have been very busy over the past couple of weeks. I didn't realize until today that I left all of our blog followers hanging on the night before surgery. Many of you follow on Facebook and have been seeing pictures and receiving updates. This blog will be a little longer than usual so that I can catch everyone up on what is going on right now.
Mac's surgery was very successful. He went through surgery like a champ. This surgery was the first surgery to apply the pulmonary artery band. This band reduces the pressure of blood flow going into his lungs. After surgery,  Mac had difficulty coming off the ventilator his first try. They had to reinsert the breathing tube and tried again the next day. The second time was the charm. He came off the ventilator without any trouble. They made us wait several hours before trying to feed him. After
weeks of working on feeding orally, I was extremely nervous about how his first feed would go post op. Our little champ ate a 50 mL bottle the first time after surgery! This was only a few mL short of his pre op goal! We were so excited and relieved to know that all of our hard work before surgery was paying off. The doctors told us that the thing that keeps babies at MUSC is their feeding. They told us that most babies go home with a G-tube in order to be able to get the necessary nutrition. What they didn't know is that our baby had prayer warriors petitioning on his behalf to keep that from happening.
When Mac continued to improve and all of his lines and tubes were pulled, they allowed us to move back up to 8D.  This is the unit we had spent a month in before surgery. We were so glad to be back upstairs with all of our friends! Mac was happy to see all of his nurses, especially Ms. Corrie! She is his favorite... ;)
After a night in 8D, the doctors told us that we were ready to go home!!! I could not believe that only a few days after his surgery they felt we were ready to go home. After months of praying and dreaming of going home, I suddenly became nervous. When I thought of taking by sweet boy 3 1/2 hours away from these doctors and nurses, I started to panic. Were we really ready to go home? Would he be safe so far away from the doctors and nurses so skilled at caring for his needs? Would we be able to provide for him the way he was cared for there at MUSC?
The next day we loaded up the car, said our goodbyes to our MUSC family, and headed home. It felt like a dream as we walked down the hallway with our baby, walked through the doors, and put him in the car to leave. I felt like they were going to come running down the hallway and tell us to bring him back that there had been a mistake.
When we got home, it was such a wonderful moment.  My parents were there with Harlie. One of my dear friends had done a little surprise welcome home decorating in our front yard. It was quite a welcome sight! I was able to snuggle up in the big brown chair with both of my babies and enjoy some quality time with the two of them where we belong.
Since our return home we have spent a lot of time in doctors offices. We had to make our first visits to the Pediatrician, Cardiologist, and Pulmonologist. We also had to get Vince his vaccinations, and Harlie and I had to make appointments for our Flu shots. These visits ranged anywhere from 30 minutes to 4 hours.
For the next few months we must continue to wait. We received a letter in the mail this week that said that he will have his 1st heart catheterization in March. Until then we will not know which surgery path the doctors will take. The most likely route is the single ventricle surgeries. These are the two surgeries the doctors spoke of called the Glenn and Fontan. The next surgery is supposed to take place when Mac is around 9 months old. Then the final surgery would take place when he is 3 or 4. This being said, we do not know for sure that this is the plan. The doctors told us that there is still a chance that they would decide to do a full repair surgery. This is ideal if the surgeon feels that he can perform this surgery without causing any damage to other parts of the heart. We believe that we should find out more about this decision after his catheterization in March. We have learned though that nothing is a sure bet with Mac. His complicated heart anatomy have stumped the doctors down there.
 The doctors have told us that he cannot be placed in a daycare setting due to his increased risk of illness. He is not to be around other children for the same reason. They did approve of healthy adult visitors, and I know that many of you are dying to meet our little guy. We would love for you to meet him, but please call and let us know when you plan to visit so that we don't miss you. As I said before, we are on the road visiting doctors quite often.
I have included some of my favorite pictures taken over the past month. I have written about several of these moments in the blog, but never posted pictures to go with them. If you follow me on Facebook you have probably seen most of them already, but I wanted to include them so that everyone could see.
Please continue to pray for our family during this time. We are still learning to function in our new "normal." We are praying for Mac to continue to eat well and grow strong and healthy. We are praying for wisdom and discernment as we care for Mac here at home over the next few months. We also pray for the doctors and nurses who care for Mac both here in Greenville and Charleston. We appreciate your prayers more than you know!

Harlie holding Mac for the first time!

Precious Moments in 8D

My greatest birthday gift ever!

My Miracle
This boy is definitely "fearfully and wonderfully made!"

 

So Serious!

Sophie Love

No more NG Tube!!!

Our MUSC Family Picnic

Moments Before Surgery

 

Just Out of the OR

Miracle Mac

Grannie Heaven

 

First picture with NO WIRES, TUBES, OR PORTS!!!

 

Going Home!!!

 

Where we belong!

Sleeping at home!

First trip to drop Harlie off at school

1st Trip to Pediatric Cardiology

• Meeting Pa

Mac's Beads of Courage
Each bead represents a procedure or experience at MUSC.

I love that sweet face!

My Most Thankful Things!

Starting to smile!

Watching Big Sis!

 

Surgery

Mac is definitely having surgery tomorrow. We do not have a time, but we do know that he will go on clear liquids at midnight. He then can't have anything after 4am.
I am so ready to get this behind us, but also nervous about handing my precious boy off to the nurse tomorrow. Please pray for Mac, the entire surgical team, and our family. We are blessed to have all of us here including my parents. I know I am a grown woman but I can't imagine going through this without my mom and dad.
So tomorrow is the day we have all been waiting for. Then we will begin his healing journey so that we can go home!
We love you all and appreciate your continued prayers and support.

The Game Plan

Four weeks ago I was welcoming our precious baby boy into this world. I was anxious to find out God's plan for his life. I was worried about how his little heart would handle being on it's own in this world. Four weeks later I find myself still waiting for more answers, but grateful for the four weeks I have spent snuggling and loving on my little miracle. 

Today I met with Dr. Atz. He is one of the cardiologists here. He said that yesterday during their meeting they finally decided on a plan. This is the consensus of the surgeons and cardiologists who put their heads together to determine the best plan.

I spent yesterday in prayer and preparing for what the potential plans could be. I was not at all ready for what he had to share. Early on one of the options for surgery was the hypo plastic surgery series. We thought that these procedures had been ruled out, so I had forgotten about them and focused on the plan for repair. Needless to say my own heart skipped a beat when he told me that we are planning to go the single ventrical route. This was our worst case scenario plan, so I was not happy to hear this news. 

After an afternoon to digest this information I am beginning to see the blessings that lie in this situation. This plan is a 3 phase plan. We will have the first surgery very soon. Our first surgery will not be the traditional hypo plastic surgery. We will be able to skip that one. The second and third are described below. Our first surgery will be the PA Band procedure they had discussed before. 

Please pray that Mac continues to take his food orally and gains weight. We also ask for God's hand to guide the surgeons, and for rapid healing after surgery. We also ask you to pray for the rest of our family as we adjust to our new normal. 

Surgical Summary

The Norwood procedure makes the artery to the body bigger and moves it to the right side.  Mac's heart already has this done, which is kind of a blessing. 
The 2nd surgery takes the upper main vessel coming into the heart (from the body)  and attaches it to the arteries going to the lungs, and opens a hole between the two upper chambers. 
The final surgery takes the lower main vessel coming into the heart (from the body) and attaches it to the arteries going to the lungs, thus blood coming from the body goes straight to the lungs and not into the heart at all.  The heart only pumps from the lungs out into the body. 

Thank you for your continued prayers. We need them and feel them! We love you all!