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.