3 Months With Our Miracle

On December 3rd we celebrated 3 months with our little miracle. We continue to see God's blessings in his life. Today we had two doctor appointments. The first was for Mac's Synagis shot. This is the shot to prevent him from getting RSV. Then we had another appointment with his cardiologist. These appointments are quite long. Today's visit was 3 hours! I will begin with our doctors appointment and then update you on a few other blessings that we have seen lately with our little man.

Last week the cardiologist did a 24 hour EKG. Today we found out that the results of this EKG were NORMAL!!! Something normal is hard to come by these days, so we are very excited about this news. We had seen several symptoms that could have meant that there were changes taking place in his heart. He did not have any incidences of tachycardia or irregular rhythms of the heart. He also had another echo of his heart today which showed no changes. Dr. Horne told me that if we see changes they would be gradual and we are to continue to just keep an eye on things to be sure we notice any changes that are taking place. We continue to track his feedings, output, weight, and oxygen saturations. We are also cutting back on one of his medications! That means that some days he will only have to take one med!!! Right now, he says we are doing exactly what we need to do. Mac is eating and gaining weight. He is growing stronger every day! God is blessing him so much!

Lately life at the Wilson house has begun to find a rhythm. Not our usual hustle and bustle, but a slow steady rhythm. Day by day we are finding our new normal. Harlie is very happy at school. She is loving her days filled with learning and fun. She looks forward to horseback riding lessons and PE on Wednesday and Launch on Thursday. Those are the highlights of her week. She has found a new series of books that has her hooked. That girl is such a reader. She is becoming an even better big sister than we ever imagined. She is learning to comfort and soothe her baby brother instead of getting frustrated with him. She is an expert on making him smile and coo. She touches my heart with her prayers for Mac and all of our other <3 friends. She prays for each of them by name daily. Not to mention her excellent grades in school. I am so proud of the amazing little young lady that she has become.

Mac is growing and developing such a wonderful little personality. He is such a great baby. He is now sleeping 7 to 8 hours most nights. He is eating like a horse! The child that we thought would have to have a G-tube to get home is now taking as much as 5 ounces in some feeds. Last night he weighed in at 12 pounds 3 ounces. This is a huge accomplishment for a heart baby. So many of the children at MUSC end up leaving the hospital with a G-tube because they cannot consume enough nutrition orally and often have difficulty gaining weight. We give ALL thanks and praise to the Lord for the way that our son is growing and thriving here at home. I have enjoyed my days at home cuddling and talking with Mac. His smile lights up my soul. When I am feeling down and wondering how we will make it through all of this, I just look at him. His joyful spirit strengthens me. He is stronger than any of us. He as been through so much, but he knows nothing of his struggles. He only knows that he is home with his Mommy, Daddy, and Big Sister who love him. He knows that he is warm and safe. He knows that all he has to do is cry and one of us will rescue him with a nice warm bottle, dry diaper, or snuggle. I am so blessed to be his mom. I am blessed to be able to hold him in my arms. I am blessed to know that he is God's child, and He somehow loves him even more than I do.

As you pray for our precious boy we ask you to help us pray for these specific things.
1. Mac's continued growth and success at feeding here at home.
2. A miraculous healing of his heart or that he will be able to have a full repair instead of the other surgeries. We do not want to bypass the left side of his heart if at all possible. God put it there for a reason. We believe that it was so Mac could have normal heart function.
3. The doctors will be able to see all of the details they need during his heart cath in March.
4. Wisdom and discernment for doctors in decision making as to where to go from here.

Thank you for your continued prayers. We love you all and pray that you have a MERRY CHRISTMAS!!!

Mac @ 3 Months Old

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!

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!

Anointed and Blessed

When my parents arrived with Harlie last night I received several precious things. 1. Hugs and kisses from my precious girl. (It doesn't get any better than that!) 2. Hugs and kisses from my Mommy & Daddy. (Yes, I still need them so much!) 3. Encouragement from my HPC family in the form of a precious prayer cloth.
Right now our family is fighting one of the most difficult battles we have ever faced and the battle is just beginning. We are standing firm in our faith that God is in control. Tonight when I opened the bag with the prayer cloth Vince and I both felt the Spirit and anointing that was there.
We are so blessed to receive a gift like this from our church family. This morning when I woke and couldn't sleep, I began to read the promises in Romans 8. What a powerful chapter start to finish!  When I finished with that chapter I was led to Psalm 139. This is the scripture embroidered on Mac's prayer cloth. Talk about reassuring to a mom who is totally out of control with the situation I am in and leaning on the Lord every step of the way...that is some powerful stuff! I have been praying for this sweet boy for years. Now my prayers are more specific. 
This morning as I sit here in silence praying and believing I want to say thank you to each of you who has already lifted him up in your prayers. Thank you for your words of encouragement. Thank you for standing beside us in believing that ALL things are possible with God. Our son is fearfully and wonderfully made. We rejoice in the blessing that he already is to us and those around us. We can't wait to share the testimony of his healing and rejoice with our healthy baby boy back in the upstate.

Prayers for Lydia

Here at the house we have made several new friends. One of our friends is a young lady who is 7 months younger than Harlie. She has recently had a bone marrow transplant here at MUSC. She has been staying at the house and going for her doctor's visits several times a week. Yesterday she was not feeling well, but today when they took her to the doctor they had to admit her. Please pray for strength and healing for this precious little girl. She has been such a blessing to us already. Her strength and beautiful spirit just light up a room. Her name is Lydia Hand. I asked her mom's permission before posting this just to be sure she didn't mind. Please add Lydia to your prayer list. 

We love you all! 

Doctor's Visit

We just got in from the doctor's appointment with Prenatal Wellness. We saw a doctor and were able to get all of our questions answered. Our doctor was very understanding and was able to give us a little more peace about how everything will happen on Tuesday morning.

After my check up he said that I have not progressed any, so we should be on schedule for the induction on Tuesday. He did give me numbers to call if I do go into labor over the weekend, but he seems to think that we are safe to plan on Tuesday morning at this point. 

We found out a little more about delivery and the process that Mac will go through for stabilization. He said that I should get to hold him briefly while they clean him up and cut the cord. Then he will be whisked into the room next door where we can watch through the window as they get him stabilized. After he is stabilized, mom, dad, and Harlie will get their first look at him as he is taken to PCICU. The plan is PCICU unless he has any other unexpected complications. Vince will get to travel with him wherever he goes in the beginning. I am sure he will be keeping us updated and taking lots of pictures. 

I am so glad that we were able to come on down and meet with a doctor down here one more time before our induction. I am feeling much more prepared and at peace about the entire situation. 

Our focus now is to just rest and wait for Tuesday morning. Please pray for our family as we try to wait patiently for the next 4 days to pass. Please pray for a healthy baby and mom at that time. Please pray for the rest of our family as we are all under tremendous stress in this situation. Please pray for all of the doctors, nurses, residents, and interns that we encounter along the way. There are many important decisions to be made and we are praying that all of those involved we be making decisions under the Lord's anointing. We trust that God is in control and that his plan is perfect. We appreciate your continued prayers and support. We love you all! 

Waiting on Mac!

This afternoon I am appreciating the time that we have had to get better acquainted with our new surroundings. Vince and I have never spent any time in this area, so we are having to learn our way around. We have spent the last two days resting and doing a little exploration. Wednesday our mission was to find our way back to the hospital and locate a grocery store that would be close by if we needed anything. Our trip to the hospital was quite interesting. We made several additional loops around one way streets and eventually made it. We noted our errors in preparation for another practice run today. We also found out that we are one block from Target and Piggly Wiggly. I am so glad that we have somewhere so close to the house.

Today's mission was to navigate our way directly to the hospital without any additional turns or loops. We did it! We were able to drive directly from the CrossBridge house to the hospital and never made a wrong turn! This may sound like a small victory, but we felt very proud when all was said and done. We also found a better route to get home. 

Tomorrow morning we have our first Maternal Fetal Medicine appointment here in Charleston. We will be meeting with a doctor to have a final NST/BPP and discuss final plans for Tuesday. I will update after the appointment to let everyone know if anything changes. Our current plan is still to wait and see if Mac decides to make his entrance before induction on Tuesday morning. 

I am most anxious to get Harlie down here tomorrow! I miss her kisses, hugs, and constant chatter. She is very excited about meeting the girls who are staying in the house with us. Please pray for both of the families that are staying here at the house. It has been a blessing to be able to talk with them about their experiences, but it also breaks my heart to see other families dealing with sick children. Please lift them up along with our sweet baby boy. 

We Are Here!

Last night I did the most difficult thing I have ever done in my life. Getting into my car and smiling as I waved goodbye to Harlie broke my heart. We no sooner made it out of the driveway, and the sobbing began. Poor Vince. I know he is just as broken as I am, but he is the glue that God uses to hold me together at times like this. I know that we are doing what is best for her. I know that she is far better off in the upstate and that Grannie, Papa, my Wren Family, friends, and neighbors will take excellent care of her. I know that she will be loved. I know that she will be happy. I still fight the part of me that selfishly wants her here with us.

One thing I am glad of is that we made the decision to give Harlie her own special phone for calling us whenever she wanted to talk. She and I spoke about 10 or 15 times during our drive down. Yes, we had to discuss very important issues like packing lunch and going to sleep with her hair wet. I listened to her work on her homework and it did make things a little easier. Being able to answer questions and hear her doing her thing helped me realize that she is nowhere near as broken by this as I am. She is confident and amazingly understands, by the grace of God, that we do not want to be doing this. 

We are so blessed to have such a wonderful support system in place. I cannot imagine what it would be like if we did not have the family and friends we do praying and offering support from every area of our lives. 

When we arrived here we were greeted with smiles and hugs by our new "Charleston Family." Dossie and several of the house guests were here and ready to lend a hand getting our things unloaded and into our room. The house we are staying in is very nice. We are here with two other families who have children receiving treatment at MUSC. I don't want to share much about their situations because I respect their privacy. I will say though that it is amazing to be able to walk into a situation like this and be surrounded by people who know the emotions that you are feeling. We bonded immediately. I feel like I have known our new friends for years and we have only spoken for a few minutes. 

An added bonus was the giant Clemson Tiger paw and GO TIGERS! painted on the wall of our room. It brought smiles and laughs when Dossie uncovered it. Evidently some of the practical jokers from her church who did the painting in our room are Clemson fans and enjoyed a little extra fun in adding this piece of art to our room, which is otherwise "Charleston" themed. They had no idea that we are Tiger fans and that even my classroom decor is Clemson. Some may see this as silly, but I see it as a small way that God is reminding me that He is in control of even the most minor details of this whole situation. Can you imagine if we had walked in to a giant Gamecock on the wall? Boy, wouldn't that have been a let down... ;) I am just kidding Gamecock fans. You know I love you! I am just glad to find some lighthearted fun in the midst of such a difficult time in our life.

I am so grateful to the volunteers at CrossBridge for their support. Having a place to go and people to pray and support us down here is amazing!

This morning, as I have for the past few weeks, I cannot sleep. I am sure Mac is preparing me for his early morning times that we are going to share together. I can't wait! I look forward to those precious moments when the two of us get to snuggle up together and rock. I can't wait to hold him in my arms and touch his sweet little face. The anticipation of his arrival has been somewhat clouded with the prospect of surgery, but I know that God is in control, so I wait with anticipation for my prayers and the prayers of many of you to be answered. I wait to be able to share his story of how God healed this precious baby boy. I wait to be able to take him home and be a family of four! 

Please continue to pray for our family's spiritual, emotional, mental, and physical health as we continue to walk in faith. Please pray specifically for Mac's healing and that we will be able to take our healthy baby boy home from Charleston soon so that he can meet all of you! We appreciate all of the prayers more than you know. We feel the peace of the Holy Spirit as we are lifted up by each of you. Your words of encouragement also mean so much. We love you all and are praying for you too. 

Change of Plans

As with everything in life, we are keeping things interesting at the Wilson house. Today I went for my final NST at Highlands expecting to be sent home as usual and return on Thursday for our final BPP. When Mac did a fantastic job during the NST with his movements and heart rate the doctor and nurse were impressed. When the doctor came in the room to listen one more time to his heart rate she had a change of heart. She said that his heart rate had slowed considerably and she wanted to have me head over to the hospital for about an hour of monitoring. His heart rate looked great and he was responding well, but because I have begun the process of labor the doctors said that it is time for us to head to Charleston. 

We are not wanting to go early, but respect what the doctors are telling us and want to be sure that we are doing everything possible to ensure that Mac is safe on delivery. I will be seeing my MFM specialist one more time tomorrow morning after taking Harlie to school. We will then determine if we need to leave immediately for Charleston or head down after dinner. We have already spoken with Crossbridge and have a place to stay when we arrive. We are so grateful for their flexibility. They are such a blessing. 

With all of that said, we ask for your prayers for our entire family. My parents are being thrown into action almost a week sooner than planned, and Harlie is not very excited about the fact that she is being left behind. Our plan had included her being down there with us our first few nights. We have assured her that we will find a way for her to make it down this Friday. Vince and I are struggling with leaving her behind while feeling like we are making the right decision to go ahead and get down there. We also ask that you pray most of all for Mac's healing. We believe that God has a plan for this precious baby boy and we can't wait to see what he has in store. 

I will be updating our blog as often as possible from this point forward. I will have Vince post pics as soon as we have them. Please feel free to share our link with anyone who will be praying for Mac. We need all the prayers we can get. 

We love you all and will update you soon!

The Verdict Is In!

Today we had our final appointment with our maternal fetal medicine and pediatric cardiologist. We have been anxiously awaiting this visit because there has been some confusion based on our OB visits. Being in a rotation with so many different OBs, who are not planning to deliver our baby, has become very complicated. I am now going twice a week for a biophysical profile and non stress test. At each visit I see a different doctor, and varied opinions about what our family should do. Several doctors felt that we should be down at MUSC a week or two early, while others said we would be fine to stay in the upstate and go down on August 30th. Being more emotional than usual and hearing such a varied pool of advice has really increased anxiety over the past couple of weeks.
Vince and I have been trying to make sense of this situation and figure out what to do with all of this advice. We decided to wait until today and talk with Dr. Greig and Dr. Horne. We decided that whatever they suggested would be the plan we would follow.
During the ultrasound we found out that Mac has FINALLY turned. He was breech as of last week when we had our BPP. I was concerned because if he is breech, then we will automatically have to have a c-section. This is something we are hoping to avoid. We also got a chance to see how he is measuring up. Overall, he is in the 80th percentile for size and has continued to grow consistently. He is already a whopping 7 pounds 3 ounces. Our doctors hope that his size will equate to strength as he recovers from surgery.
Dr. Horne was pleased with the growth of the left side of the heart. He said that he is not seeing any turbulence from the mitral valve which is a good sign that the valve is growing and is big enough. He also said that he is seeing good strong pumping and flow. He said it sounds good too. He told us that he is 75% sure that we are looking at the one time surgery for DORV-TGA. We were not happy to hear that the arteries did look transposed again today. He said that they are side by side which usually means transposition. We are praying that they will be able to patch directly from the aorta to the left ventricle. If they can, then we will not have to do the arterial switch procedure!
After the ultrasound, we proceeded to barrage the doctors with all of our questions. They both told us that our plan to stay in Greenville until the 30th was the best plan for our family. Dr. Horne told us that Mac's defect is not one that would require immediate action at MUSC so we would be fine to stabilize him here in Greenville, and when we BOTH are ready we could be transported TOGETHER to MUSC!!! This relieved so much stress about the possibility of delivering in Greenville.
So the plan is now official. Our bags are packed and we are planning to enjoy the next 2 1/2 weeks here at home with our family, friends, and my fantastic first graders! We will then enjoy one more weekend as a family of 3 in Charleston before Baby Mac makes his appearance on September 3rd.

Precious Moments

Each night bedtime is a special time at our house. Unlike many families we choose to  snuggle our girl to sleep at night. Those times lying there after bedtime prayers are often filled with some of the best conversations with her. I had to share last night's conversation if for no other reason than to help myself remember. 

One of the biggest struggles I am having as we prepare for our trip to MUSC is leaving Harlie behind. I know that this is the best situation for her, and I am so grateful that my parents are turning their lives upside down to be there for her when she needs them most. I know that my WES family will take extra good care of her at school, and she will be able to continue her life as much like normal as possible. I just think of the little things like our times talking at bedtime and it breaks my heart. 

Last night as we were lying there I told her that I sure was going to miss these times while we were in Charleston. She told me that she was going to miss it to. I reminded her that Grannie would be taking over my snuggling duties. She said, "If I change my sheets I think Papa will like my bed." I asked her were she was going to sleep, and she replied, "I will sleep in your bed with Grannie. It won't smell like you guys though." Our daughter has a nose like no other. She is always telling us about the smells she connects with places and people. We talked for a few minutes about our plan for her to be traveling down for the important days like the day he is born and his surgery. We then talked a little abut her weekend visits after surgery. She seemed to be ok with a few days here and a few days there.

Then she said, "Mommy I am nervous." I was expecting her to tell me that she didn't want us to leave her and that she was nervous about staying here with Grannie and Papa. I was not prepared for what she said next. "I am nervous that I won't get to see and hold my baby brother. I want to see him and hold him." 

I reminded her that we are going to do everything in our power to see to it that she gets to see Mac as soon as he is born and that we will do our best to get the nurses to let her hold him. We reminded her that it is out of our control because the nurses have to do what is best for Mac.

As much as I try to prepare her and ensure that she is comfortable with the arrangements we are making, she never ceases to amaze me with the things that matter most to her. I am so proud of the young lady that she is. Mac is blessed to have a big sister who is already in love with him. A big sister who prays for his healing multiple times throughout the day every day. Vince and I are so blessed to have such a thoughtful caring little lady. 

I love that beautiful girl! 

Harlie's Ears

On the heels of yesterday's wonderful news I must ask you to lift up our sweet girl in prayer. This morning she had an ENT appointment to follow up on a ruptured eardrum this spring. Dr. Brown said her right ear looked, "Happy, Happy, Happy." The left ear though was not. He said that at some point Harlie's left eardrum had been infected by a specific bacteria that eats away at the eardrum. He told us that the hole was so large that it probably would not heal in it's own. He told us we would need to schedule an appointment with their ear specialist to talk about repairing the damage. After sharing with him about our very unpredictable fall schedule, he was kind enough to go and talk with the specialist to see If he could go ahead and see us today. To my surprise the specialist came right to our room so that we were able to take care of the planning in one quick visit. 

Dr. Rampey took a look at her ear and said that 45% of her left eardrum is missing. He told us that surgery was necessary and that he would have his scheduler call me ASAP to get her in before we have to go to MUSC. The blessing in all of this is that the hole is on the back of her eardrum. This was a good thing because he said that he could do the surgery within the ear canal. Otherwise they would have had to lift the ear from the back and then reattach it. The only incision they have to make now is a small one just above her hairline to take a small bit of tissue for the patch they will be pacing on the eardrum.  

Please pray for Harlie. She is handling the news like a champ. We explained that she will be asleep the whole time, and that we will be there when she wakes up. She seems to be a little nervous but otherwise she hasn't let it get her down. We a blessed to have such an amazing daughter!

Keep Praying, God is Working!

Today we met with our pediatric cardiologist and our maternal fetal medicine specialist to check Mac's growth and take another look at that precious little heart. Today's visit was filled with lots of wonderful news of the ways that God is healing our baby boy.
So far God has answered many prayers for this little guy. Our first prayers were that he have all four chambers of the heart. That prayer was answered. The second was that the left side of his heart continue to grow and develop to "catch up" with the right. The doctors at MUSC said that the left side was only slightly smaller than the right. We have been praying that the Mitral Valve continue to grow and develop making it possible to have the one time surgery and for God to touch his heart with His healing hand. Today when we met with Dr. Horne he told us that the left side is looking promising for that one time surgery and that there is even a possibility that the main arteries may be "malpositioned" vs. "transposed." This is WONDERFUL news! He told us that he cannot be sure because we are trying to see something so small and our angles are limited trying to see using ultrasound. I am praising God for the work He is doing in this little heart. God told me to wait, we are waiting, and He is working!
This boy has been in His hands from the very beginning, and I am just so grateful to be able to see how God is going to use him. Please continue to pray for healing. Please continue to pray that the doctors will be able to do a one time surgery IF they have to do surgery.
On another note, I am grateful that we received confirmation that I do not need to travel to MUSC early. We were concerned when one of our OB doctors suggested that we go down 2 or 3 weeks early to be in Charleston if I went into labor. After talking with Dr. Horne today he assured us that if I do go into labor in Greenville that there is no need for alarm. He said that Mac would still be flown to MUSC before me and that it would mean a brief separation, but that he was not at risk being born here. He also told me that the ECMO, which was mentioned by one of the OB doctors, was not in the plans for Mac. This means one less machine for him to be dependent on. They said that Mac's oxygen levels would be monitored and that if necessary they would just put him on oxygen to ensure his safety while preparing for surgery.
After he is born they will do their tests and determine the final plan for how to proceed. We are just keeping a very close eye on his development at this point. I will be increasing my OB visits and go back one more time to MFM to do another full ultrasound.
We continue to Praise the Lord that other than his heart, all other development seems to be right on track. Today Dr. Grieg told us that he is a "stocky" little fella. He is currently just short of 5 lbs. This is a little larger than average for this point in my pregnancy, but they tell us that they want him to be a big healthy boy. This is a good thing with him facing surgery so soon after his arrival.
With all of the challenges ahead for this little guy, I still stand firm in my faith that he is in the hand of the Great Physician! Thank you for each of you who continue to lift Mac and our family up in your prayers. We are so grateful to be surrounded by people who love us enough to pray without ceasing on our behalf. Keep praying, God is working!