Living in Limbo

The past couple of days have been busy for us here at MUSC. I have been posting pictures on Facebook, but haven't had time to write about what is going on. As some of you know, we made the decision for Vince to return to the upstate for a little while to save his time for after Mac's surgery. This was a very difficult decision for both of us, but it seems to be working very well for Harlie especially. She is very happy to have Daddy at home and be able to at least have that sense of normalcy. 

This week my mom is staying with me here in Charleston. It has been nice to have my mom here with me to help me deal with the roller coaster of emotions that are taking place right now in my life. Living in a hospital is not an ideal situation by any means. I am so grateful that we have the security of the nurses and doctors right here, but I long so much to be back in Greenville at home. 

The separation of our family is the most difficult part of this process. We have always been so close that it is breaking my heart to be away for such long periods of time. I know that Harlie understands to a certain extent, but I also know that this is so difficult on her. She doesn't want us to be apart. I keep trying to remind her that this is hurting me just as much as it is hurting her, and it will be over soon. 

The doctors here are very uncertain about the plan for Mac. At this point, they need to see growth before they do anything. They want him as big as possible before doing any kind of surgery. Each time we see the doctor he reminds us that our length of stay and surgery plan are all dependent on his growth. I understand their reasoning, but as a mom, I just want to see them fix the problem. I want my son to be well. I want to take him home and be a family together again. 

Our weekends have become precious time. With both Vince and Harlie in Greenville now, the only time we have as a family are our weekends. It has made things much more complicated because we are trying to pack a week's worth of snuggles, hugs, laughter, and even tears into just a couple of days. We are trying to make the most of this situation and remain positive. That seems to become increasingly more difficult as our length of stay continues to be extended. 

At this time we have some very specific requests for prayer. Please pray these specific things as you lift our family up this week. 

1. We are praying for Mac's body to grow. We need to see his size double before they will consider doing his corrective surgery. He must also grow before they will do the temporary fix with the PA bands. Please pray for growth. 

2. Pray for the fluid on his lungs to be reduced. He has had fluid building up on his lungs. They are giving him medications to reduce the fluid, but the amount of fluid is effecting his breathing and ability to feed orally. 

3. Please pray for increased amounts of oral feeding. In order to grow we must be eating. Mac has struggled over the past week with oral feeding. He is still getting food via his nasal feeding tube, but it is important for him to learn to feed orally and continue to develop those little muscles so that eventually he will be able to do it all on his own. 

4. Our family needs the comfort of the Holy Spirit. Please pray for Harlie. Ask The Lord to be with her and help her understand this situation. Ask Him to help her know that her mommy loves her more than life itself and that she longs to be with her. Ask Him to help her understand that this is only for a season of her life and that normal will return at some point. 

Please pray for VInce. He has been thrown into the role of both parents at home. He is doing both of our jobs as he cares for Harlie, while working full time. I cannot imagine the stress he is feeling. He is trying to be both of us and still has the same emotions and concerns about our precious boy here in Charleston. Please pray that the Holy Spirit will strengthen him at this time. Please pray that he will feel the love and support that I have for him from all the way down here. I know that may sound silly, but I know that he needs that too. 

Please pray for me. I need God's peace and strength as I continue to remain here in limbo. I am beginning my first week on my own here next week. I know that God is here with me and that He is all that I need, but it is a very difficult adjustment for a girl who has never really been away from home. Please pray that each of us will be able to look through the fire and see precious perfect gift that we will have when all of this is complete. 

This journey is a difficult one, but I know that God's plan is perfect. We are watching, waiting, and expecting great things!