Hospital Ping Pong

This weekend was one more wild ride. I am a planner and like routine. Change is not something that I do well. I never realized until this weekend how much my steady routine means to me. As I shared in my last post, Mac was moved to NICU because he was the healthiest baby on the floor.

This weekend proved to be even more hectic than last week. We were anxiously awaiting the arrival of Harlie, Grannie, and Papa, when we received a call that we were having a few more visitors. Grammie, Aunt Nancy, Zach, and Evan were on their way down. While we were waiting on their arrival, we were able to find out a little more from the doctors about what they are working on. They decided to go back and do more ultrasound images to check on his heart anatomy again. This meant that we would have to wait until today to hopefully find out more information. 

When Grammie and Nancy arrived they were able to see him briefly before the nurses had shift change. At shift change we cannot have any visitors due to patient information being exchanged. We left after their visit to meet my parents and Harlie for dinner. Friday has become my favorite day of the week. Seeing her climb out of that car brings me so much joy!

After dinner we had a big surprise planned for our favorite big sister. We had spoken with Mac's nurse for the night about a late night visit. We gave Harlie a special big sister t-shirt that is for the upcoming MUSC Heart Walk. She of course had to change into it immediately. Then we headed to the hospital. When we got there I went back to make sure we were still on for the big surprise. Mr. Drew, Mac's nurse, was such a blessing. We planned for me to hold Mac and then ask Harlie if she would like to hold him. She was so excited about being able to go back into the NICU to see him. She had no idea that she would be able to actually hold him. When I asked her, her face lit up. This was a moment that she had been dreaming of as a big sister. We sat her down and let her hold him. She was so careful and took extra care with him. Mr. Drew even let her help him change out some of the monitoring pads on his chest. She was so proud to be able to help in such a special way. It was such a special time for our family. I will never forget the smile on her face when she held him in her arms for that first time. She kissed, snuggled, and petted him for several minutes before it was time for us to go. That was a night I will never forget. 

The next morning was spent with the three of us in NICU together. Harlie didn't get to hold Mac, but he sure did get a lot of kisses. Then just before lunch, Vince went to the rounds meeting with the doctors. That was where we got the news that we would be going back to PCICU. They had room for us, so they wanted us to move back down. We were nervous because we liked the family friendliness of NICU and how they encouraged us to hold and do for Mac. We were concerned that moving back to PCICU meant that Harlie wouldn't even be able to go in to see him. Their minimum age for visitors is 12. We were all on such a high from the night before, but came crashing down at the possibility of this. 

We then talked to the doctors in NICU and they told us that they had talked to the doctor about Harlie being granted visiting privileges. She had permission to visit him in PCICU! 

When we returned to PCICU we found things to be a lot different. First let me say that the nurses are amazing there. When Nancy was in for her visit the nurse told them that they could hold Mac. Nancy and June both got to hold and love on him. We went in after their visit and said goodnight. He spent the night in PCICU with the same nurse who had him the night he was born. 

When we got to the hospital yesterday morning for rounds, we received the news that we were being moved AGAIN! This time they needed our space and were moving us to a place called 8D. It is a very nice area of the Pediatric Cardiology unit that is mostly used for recovery. In our situation they are using it for monitoring Mac's development. The best part of 8D is that we get to stay with Mac 24/7! We are able to be REAL parents. We feed him, change his diapers, and as I type right now he is curled up asleep in my lap! He is still being monitored but they are using the mobile kind that allows him to move freely in our room. 

When we arrived yesterday, we all piled into the tiny room, but were so grateful for the place we could stay together we didn't care about the size of the room. This morning, the doctors came in for rounds. They talked with us a little more about the timeline.

Right now we are in a holding pattern because they are trying to decide between three options. The first would be to send us on home to wait for a little while before surgery. We don't think that this is our  best plan though at this time because of his oxygen saturation levels. They are extremely high because he is a "mixer." His blood mixes in the heart and some blood that is already oxygenated is being reoxygenated again. 

Our second option is to have what they call PA Bands placed on his heart as a temporary fix to allow his heart more time to grow. The pulmonary artery is under a great deal of pressure at this time, which can do long term damage to his lungs if not repaired. The doctors would go in and place a band around the pulmonary artery and adjust it so that his oxygen saturation would stay within normal range.  This will hold off his major surgery until he is a little bigger making the surgery a little easier. The only concern that they have is whether or not the VSD (hole) is large enough for the surgery, or if it might grow smaller over the time we wait to allow him to grow. 

Our third option is to go ahead and have the full surgery to correct it all at one time.

We were told that we would hear from the cardiologists today. Last week they just kept putting off the decision because they are trying to get all of the images of his heart to be sure that we have the right plan in place before they open him up. It is difficult to wait, but we know that the team here is doing everything they can to be sure that they do what is best for our little man. 

They told us that we would be staying in 8D for the next 2 weeks for them to monitor Mac's growth and development. They said that sometime next week we should have a little better idea of what to expect. They are leaning toward option 2 though with the PA bands and full surgery a few months later.