We're Still Here...

Hi all! Sorry it has been so long since my last post. It seems like we never have time to sit down long enough to write. We have been busy busy busy between doctors, nurses, specialists, and visitors. We are still waiting for more information from the doctors about their plan for surgery. The plan has already changed about 4 times since my last post. 

I will spare you all the details but tell you the most important information. On my birthday Mac began having some problems with arhythmia. He was started on a new medication to help keep his heart rhythms normal. This medication is working perfectly so far.

Last week they began to discuss placing a more permanent feeding tube in his side so that we could begin to look at going home. This was evidently exactly what Mac needed to hear. From the day the doctor mentioned this surgery his oral intake began to increase. We are continuing to see increases in the amount of food he is taking orally. This means that we may not have to have the G-tube. The doctor said this morning that if we continue to see this we might take out the nasal g-tube and see how he does with three hour feedings. If he takes in enough orally we could cancel his procedure! 

He is also doing much better at keeping his bottles down. 

While the continued good feedings looked like we could potentially begin to plan a homecoming, we received the news that his heart is changing those plans. He had another echo on Thursday that showed increased pressure again on the upper VSD. This is the hole that is allowing blood flow from the left to the right side of the heart. This VSD is the one that the doctors are planning to use to do the repair surgery. If this hole is closing up, then we will be forced to do something in the near future.

The doctors are telling us that either the surgeons will plan a staged surgery and do something to keep that hole open temporarily until he grows, or they may decide that it is better to go ahead and do the full repair. The good thing about the staged surgery is that it buys us time for him to grow. The good thing about doing the full repair now is that we only have to have him on the heart/lung machine one time instead of multiple times. Either way, we are looking at a surgery in the near future according to the cardiologist. 

Please pray that his oral feeds will continue to increase, and that he will continue to gain weight.  Please pray for wisdom for the doctors as they make decisions for our next steps.  Also, please continue to pray for our family as we continue to be separated throughout this time.  

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!

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.

The Big Move

Today was a very eventful day for Mac. We began our morning with a trip to the PCICU to visit and catch the doctors during their rounds. We were enjoying talking with Mac and sneaking a kiss or two until the doctors got there. After quite a wait one of the doctors came by to apologize for our wait and told us that a baby had gotten sick in surgery and that they were having to step down to the operating room. We waited and enjoyed our sweet boy a bit longer. Finally, the doctors returned with some unexpected news. With the situation in the operating room and additional babies being added to the unit there was not enough space for all of the babies in PCICU. When this occurs the healthiest baby on the floor is moved to NICU. Guess who has the healthiest baby on the PCICU floor....

Why that sweet Wilson boy of course! While we were ecstatic that our son has the distinct honor of being the healthiest baby in the PCICU, we were also very concerned about him leaving the unit. We had just gotten settled in and "comfortable" with the PCICU and their procedures.

We left the PCICU and went to get lunch while Mac was transferred. When we returned to our room, the lactation consultant stopped by to check on us. Thank goodness she did. She was able to give us a bit of a heads up about the NICU. She told us to be prepared because there was far less space and that it was a bit hectic compared to PCICU. Boy, was she right! It was quite a shock when I first walked into the NICU. The setup and rules are very different from PCICU. 

After a day of changes, I was so overwhelmed with the NICU that all I could do was cry. The nurses and doctors were fantastic as usual. They spent several minutes reassuring me about the changes and making sure that we were comfortable with our new surroundings. Then I received the BEST news of the day. The attending physician looked me in the eyes and said, "Would you like to hold your baby?" 

In a state of shock, I looked at her and asked if that was possible. She said, "Of course! Up here in NICU we hold!" 

This made every doubt and fear about our move to NICU vanish. I was going to get to hold my son! Vince being the amazing husband he is told me to go ahead and hold him first even though he still had not had the chance to hold him. I am truly blessed to have him as my husband. We decided that after a little while we would switch off and he would take his turn next. Our nurse told us that she needed to do an admissions assessment of him, so we decided that we would make the swap after she assessed him. When she started her assessment I stepped down the hall. When I returned, I was stopped at the door by our nurse. She told me that one of the lines in his umbilical cord had been cut during the assessment and that he was stabilized now, but she wanted to warn me before I walked in. When I turned the corner, all I could see was my precious husband who had obviously been crying standing there looking at me with a dazed look on his face. 

He then described to me how the line was cut. He said that PCICU and NICU do not use the same procedures for securing their umbilical lines. He told me that the nurse was being extremely cautious while removing the tape, but she could not see the line and accidentally cut it. He said that as soon as the line was cut it began to bleed. I cannot imagine standing by helplessly watching this happen. By the time I returned all was well and we found out that the cardiologists in PCICU said that he was doing so well that we didn't even have to replace the line. Mac now has one line running through his umbilical cord. 

After such a traumatic moment came a wonderful one. After all of that Vince finally got to hold his son in his arms for the first time. I will never forget the look in his eye when he looked up at me with Mac in his arms. We are both so grateful for that moment. 

The two of them enjoyed quite a bit of time together and then I got to enjoy a special moment of my own. When she had everything cleaned up and back in place she asked me to change his diaper. This is another special privilege of being in NICU, and YES it is a PRIVILEGE. So many times I complained about having to change diapers. After not being allowed to, this simple act has taken on new meaning. It was a special moment. One that I will not forget. Then I got to check his temperature. This was a night of many firsts for our family. 

We then had to wait for the cardiac team to meet and share with us the results of their discussion. We first met with the NICU cardiologist. She shared with us that they would be doing additional ultrasound images of his heart tomorrow afternoon and giving him a PIC line. (I think that is the correct abbreviation.)

This is a port where they can draw blood or administer medication without having to do multiple sticks.Then his PCICU cardiologist met to tell us more about next week. 

We learned a lot but still know nothing. That seems to be the trend with our conversations with our doctors. Don't get me wrong. This is not a negative thing.  I just like definitive answers and we don't have any at this time. The doctors are taking their time in making a diagnosis to be sure that they get it right. They know what his defect is, but they are looking at the intricacies of the heart. They are trying to explore every possible solution for correcting his defect. The latest news today is that we may be looking at two separate procedures. The reason for this is to allow him time to grow and give the doctors a little more to work with when they do his most invasive surgery. 

We are not sure of anything at this point, so we are just praying and waiting to find out the details. Please pray with us for his team of doctors as they continue to seek the best care for him. 

Quick Update

We just came up from the PCICU after being with Mac. The doctors took forever to do rounds, because a baby got sick in surgery. We are still waiting for the surgeons to put their heads together this afternoon to find out a plan for Mac's surgery, but I did want to send out a quick update and let you know our other latest development. 

As I type this, Mac is in the process of being moved to the NICU. This sounds bad but is really a good thing. The only reason he is being moved is because he is the HEALTHIEST baby on the PCICU floor right now. They will be moving him to NICU for at least today, maybe a couple of days. I don't want to leave PCICU because everyone has been AMAZING there, but I am sure that NICU is going to be a great place for Mac too. 

He is the sweetest baby! Oh my word! He has me wrapped around his little finger already. Today while they were doing another ultrasound for more images of his heart he would cry, but as soon as MOMMY held his hand, touched his head, and talked to him he immediately calmed down. (As I type this my head swells with pride...) Seriously, he is such a sweet boy and already has me right where he wants me. I think this was an answer to prayers though to remind me of how much Mac needs me too. I have been struggling with not being there for Harlie, but I feel that nudge from the Holy Spirit that I am where I need to be right now. 

Please continue to pray for our family. We love you all and will update again as soon as we have more info. 

Mac is here!

Mac Taylor Wilson has arrived! Yesterday was a very long day as we waited for him to make his grand appearance. We started our day at 5:30am when we checked into MUSC. Eighteen hours and two epidurals later Mac finally decided it was time. Mac was born at 11:34pm last night. We had been prepared that we would not be able to hold him after delivery, but the nurses who were working on the stabilization team made it happen. They brought Mac into the OR where we delivered and allowed me to hold him for about 5 minutes. Vince was so gracious and allowed me to take up all of his time. We were able to touch his face, kiss his cheeks, and spend a few precious moments just the three of us before we had to let him go back. 

Then they told us that they would finish stabilization and bring him by our room so that his big sister could see him. He was in an incubator so we weren't expecting to get to touch him after our brief time in the OR. Yet again, the nurses made it happen! Harlie got to reach into the incubator and hold Mac's hand. When she did he smiled at her. She is so proud of her baby brother. I can't say that I blame her though. He is a perfect gift from God. 

My parents were also able to hold his little hand and touch him. It was such a wonderful experience for all of us. 

They then took Mac to PCICU. This is good news because it means that he was having no other complications other than his heart related issues. When they got him settled into the PCICU, Vince was able to go down and see him. Harlie and I enjoyed a little snuggle time while he was out of the room. The nurses were kind enough to let her spend the night here at the hospital with us instead of having to go to the hotel with Grannie and Papa as planned. She was very excited about that. 

This morning I was up bright and early to go down and visit with my little fella! I went down around 5:00 to see him and had a chance to chat with his nurse in PCICU. She was able to answer a lot of my questions about his stay there. We found out when the doctors make rounds so that we can be a part of it and find out more about the next steps in this process. After grabbing a  bite to eat, I headed back down to the PCICU for the rounds meeting while Harlie & Vince got a little more rest. At the meeting, they told me that they had done a few ultrasound images last night of his heart and confirmed the diagnosis DORV-TGA. They told me that today they would be doing more tests and taking more images to hopefully get a timeline in place for his surgery. When I went back down a few hours later the nurse told me that these tests had been postponed until tomorrow. We are now waiting until then to find out more information. 

One change  in his condition from the time I was there at 5:00 to when I returned at 8:00 was that he had some vomiting. The nurse said that this is common. This was the result of him swallowing amniotic  fluid. He now has a tube in his nose that runs to his stomach to allow the nurse to suction air from his stomach. 

Please pray for wisdom as our doctors make decisions about the next steps tomorrow and in the days ahead. Please pray for us as we just told Harlie goodbye again for a few days. It is breaking our hearts to see her go. She wants to be here with us so bad. We want her here, but we know that she needs to be at school. We also know that she would be going crazy here because she can only visit PCICU on weekends. We are torn between the two precious gifts God has given us. We love them both so much, and are trying to make the right decisions for them. 

Please pray for Harlie and my parents as they continue to adjust to the role of primary caregivers. I cannot imagine how difficult this is on them. They are used to being fun G&P and now they are having to do all the not so fun stuff, with a little girl who misses her mommy and daddy and longs to be 3 hours away. 

With all of that said we are feeling blessed to have such a handsome son. He looks so much like his big sister. We are blessed to be able to take the time and be here with him when and where he needs us. Thank you for your continued support and prayers. We love you all! 

Twas the Night Before Mac...

Tonight is the last night of The Three Bears. Tomorrow we officially become Mama Bear, Papa Bear, Sister Bear, and Brother Bear. I cannot believe that this day is finally here. This pregnancy has been a roller coaster ride from day one, but we are so anxious to meet sweet Baby Mac tomorrow, September 3, 2013!

As you can see from the photo above we are prepared for his arrival with the many special gifts from our friends and family. I am so grateful to each of you who have showered us with gifts for Baby Mac along the way. Many of you have even made special items for him. These are so dear to my heart!

Most of all we appreciate your continued prayer and encouragement. I have received so many calls, texts, e-mails, and Facebook messages today. I am overwhelmed with the prayer warriors we have behind us all the way. 

Tonight before I lay down to sleep, I feel the peace of the Holy Spirit. He brings me comfort, and I know that it is because so many of you are praying and lifting us up. My next blog will be to announce the arrival of our precious boy. Please continue to pray for all of our family. We can't wait to share Baby Mac with all of you!