Trick or Treat

When Scott woke up this morning, Susanne surprised him by telling him that she and Paxton would be following him down to NC today. He was ecstatic. Susanne couldn't bear the thought of him missing another one of Paxton's "firsts".

They spent most of the morning getting everything packed and ready to go. Scott was shocked with how long it took to get just Paxton's stuff together. By the time they were finished, both cars were fully loaded.

During the trip down, Paxton had a few instances where he got really worked up. He would be crying for a short time before Susanne decided to pull over. It was difficult to know whether he was crying because of something serious or if he was just overtired. At times, it seemed like something was hurting him or he was caught on something, but whenever Susanne pulled over he just appeared to be overheated. He would immediately respond to being taken out of the car seat and held each time. He loved to be snuggled close and tight. If only she could just have him curl up in the passenger seat and sleep the whole way like Maverick used to do, things would go a lot smoother. It was unfortunate that he never slept in his carseat. Usually it was because he could never find a position comfortable enough to be in or he was overheated. This was definitely a recipe for disaster for any long road trip.

Scott and Susanne made sure to pull over for some Five Guys along the way. Gigi and Poppy had made this somewhat of a tradition a while back since they did not have Five Guys in their town. It was only appropriate that they continued this trend in their honor.

They all made it safely to NC and Paxton couldn't wait to get out of the car. He had sweated through his onesie and looked like he had just been sitting in a sauna for hours. He was just plain miserable. When they finally got out of the car, the cool breeze was so refreshing. It was amazing how quickly Paxton recovered when he was cooled off.

Susanne and Scott had to stop by Gigi and Poppy's house first to drop off James before heading over to Aunt Leah and Uncle Wally's house for the Halloween party. They decided to try to surprise them since they didn't know they were coming down. The fact that no one knew that Susanne and Paxton would be there made it extra fun. Their plan didn't work as well as they had hoped. When they arrived at the house, Gigi wasn't even home and Poppy was on the phone. Scott tried to wait and wait until Poppy was off the phone, but it just wouldn't happen. Scott ended up encouraging him to answer the front door despite being preoccupied. He was beyond excited to see Susanne and Paxton standing in the doorway. They were the first trick or treaters of the night and not the kind he was expecting. They didn't get to talk to Poppy much since he was still on an important phone call. They decided to head on over to Aunt Leah's house instead of wait any longer because they wanted to be there in time to go door to door with Parker to get candy. On their way out, Gigi pulled into the driveway. She was confused at first, but quickly realized what was going on. She was so thrilled to see baby Paxton.

Aunt Leah and Uncle Wally, along with their neighbors, had hosted a Halloween party every year for the past few years. The location of the party alternated between their house and their neighbor's house. This year it was scheduled to be at the neighbors'. Everyone would spend all day decorating the entire place with all of the scariest decor. The coolest part was the realistic bats that they somehow strung high in the sky with string you couldn't see. They would activate at random times and scare anyone that was around. Wally's famous trick was to stand completely still in a coffin that was upright and not move until an oblivious victim walked by. He would then move towards them and send fear up their spine. They would immediately regret coming up to the house for candy.

This year was no different. They had gone all out with their spooky set up. When Susanne, Scott, and Paxton arrived, they made sure to park on the side of the house so no one could see them. Scott headed on over to the party since they were expecting him. Susanne and Paxton stayed back to wait for the perfect timing for the surprise. This would be their third surprise of the day. Scott wanted to make sure to get this on the video camera. He pretended to be taping his nephews. He was in the middle of getting a comment from Aunt Leah, when Susanne and Paxton showed up. Her face was priceless. Susanne had been able to surprise her a handful of times over the last few months. She had fallen for each and every one of her master plans. Susanne loved surprising people. It was always so fun to make people smile.

Scott and Susanne changed Paxton into his Halloween costume before they went trick or treating with the gang. Paxton went as a monkey...well because he is one. He looked so adorable. Scott held Paxton the entire time that they walked from house to house. He slept the entire time. Paxton was tuckered out because he didn't sleep at all on the trip down. Parker enjoyed trick or treating. It took him a while to figure out what to do. Everytime Aunt Leah would ask him, "What do you say?", his response was always "Thank you" instead of "Trick or Treat". It was the cutest thing in the entire world. Susanne got creative and came up with a few interesting tricks for Parker to do in between each house. She taught him to shout trick or treat so that everyone could hear him. She dared him to touch a tombstone and skeleton that was in someone's yard. She taught him to hide behind trashcans and cars and then jump out to scare Leah and Scott as they walked by. This was his favorite trick by far. He wanted to continue to do that trick over and over.

Once they were back at the house, they munched on some of the food that they had prepared for the party. Gigi and Poppy came over after handing out all of their candy to help join in on the festivities. Everyone had a great time catching up and watching all of the kids go through their candy bags to see what kind of treats they collected through the night.

All in all, it was an awesome night. It was so worth it to Susanne that she had driven down so that Scott could be a part of Paxton's first Halloween even if it was only for a couple of days. They both enjoyed seeing Parker truly trick or treat for the first time. Lastly, they loved the time they got to spend with their extended family. Hopefully, next year Paxton would get to do this all over again with his cousins.

I'm On a Boat

Susanne and Scott woke up next to each other. It was so nice to be in the comfort of each other's arms again. They planned to get out of the house today. Scott thought that it would be good for both Susanne and Paxton to break away from their daily routine.

It ended up being a beautiful day. They decided to take Paxton to Cox Farms which was right down the road from their house. At this point, it was somewhat of a tradition for them because they had been every year for the last three years. It was the closest thing that they could find that reminded them of the NC State Fair that they loved so much. They loved the live music, the variety of farm animals, the hayride, the slides, and of course, the food. Susanne would wait all year long to get the homemade kettle corn. She was so excited when she found out that it was acutually safe for her to eat. This made her day. Scott's favorite by far was the fresh apple cider. It was delicious. They had fun walking around the farm. Paxton's favorite animals were the little piglets. Susanne was particularly fond of the black ones.

Their time at Cox Farms was limited. Paxton had a meltdown after they had only been there for about an hour. It took them a while to calm him down. They made some final food purchases and picked out some perfect pumpkins before heading home. Hopefully next year Paxton would be interested in going down the slides with his daddy.

Moppy showed up in the afternoon to watch Paxton for the evening so that Scott and Susanne could help Colleen celebrate her 30th birthday. Uncle Looney had a wonderful evening planned for her and her guests. Both of Colleen's sister's, one of their husbands, and her father traveled in to join the party. The first stop was at the Neumann's house where everyone enjoyed a few cocktails and appetizers. Shortly thereafter, they headed out for a dinner cruise. They would be dining and dancing all night long aboard The Odyssey as they cruised by the historic sites of Washington DC. Susanne and Scott had done this one time before aboard The Dandy and had throughly enjoyed themselves. They loved the water and loved any excuse to be out on it. They had a fabulous night together. It was awesome that Scott was able to come up to be with his best friend as she turned another year older.

What a Sweet Potato

Paxton had a therapy session scheduled for this afternoon. He would be working on oral feedings today. Susanne had planned on adding in a new food since he had been doing so well with the apples and bananas. She thought that she should try a vegetable this time. She had plenty of sweet potatoes so it seemed like an appropriate next choice. Susanne loved sweet potatoes and she hoped that Paxton would too. She thought that out of all of her choices that this would be one of the tastiest vegetable since it was naturally sweet. It was also the vegetable with the most bang for its buck as far as nutrition went.

Susanne couldn't wait to use her Beaba Baby Cook Baby Food Maker. She could not only steam the sweet potato, but also puree it when it was fully cooked. It was very easy to use and worked relatively quickly in turning out the finished product. Susanne was shocked with how many servings she got out of cooking just one sweet potato. She could freeze whatever she wasn't going to use over the next few days and thaw it out whenever she was running low. It was all around a great little appliance. Making all of Paxton's food would definitely save her lots of money in the long run.

Paxton's therapy appointment went well. Paxton gagged and vomited with the third taste of bananas. It appeared that bananas were not Paxton's favorite anymore despite him being a monkey. They continued on once Paxton recovered to see if he would do better with a different food. He still seemed to do okay with the apples. They were actually at the top of his list. Closer to the end of the session, Susanne introduced the sweet potatoes for the first time. Initially, the therapist thought that the consistency of the puree was accurate, but Paxton thought otherwise. The sweet potatoes were still a little too thick for his liking. He couldn't quite figure out how to get the new orange goo off of his upper gums. He immediately panicked and started to gag. He tried to help himself recover by placing his hand under his jaw to force it closed. It appeared to help him swallow. Susanne thinned out the sweet potatoes by adding some warm water. Once she did this, he was able to handle them much better.

Susanne was informed by the therapist that she should take note of the response that Paxton has with every food. She needed to offer him each food at least ten separate times to get a true idea of whether he liked it or not. If he had more negative responses out of the ten attempts, then she should eliminate it from his diet for the time being. This seemed like sage advice.

Susanne decided to clean up the house some while Paxton took his afternoon nap. He slept right through his next two feedings. This actually gave Susanne some time to cook herself some dinner. Susanne had been craving hamburgers for the last few days. She decided to make them despite not being able to add cheese. She tried to spruce them up with lots of different seasonings and add a variety of toppings. Unfortunately, nothing quite made it taste as good as cheese. This had continued to be one of the hardest things that she had eliminated from her diet. It made it extra difficult coming from a family that ate cheese by the block regularly. There was no denying that cheese made everything better.

Susanne had no idea that this had been somewhat of the calm before the storm. Paxton woke up crying right as Susanne sat down to eat her dinner. He always seemed to have perfect timing. For some reason, he had trouble settling down for the rest of the evening. He would sleep for a short time and then wake up uncomfortable. Hopefully, this was just a one time thing. She had a hard enough time getting enough sleep with just his intense feeding schedule. She didn't need anything else added to the mix.

Faux Diaper, Faux Real

Paxton had his first appointment with his pediatrician since his surgery this morning. He had not seen her for eight weeks. This may not sound like a long time for most children, but it was in Paxton's world. Susanne was doing well this morning. She was on top of it. She was able to shower, pump, eat breakfast, feed Paxton, bathe Paxton, take care of the animals, and still manage to get out the door on time. Even with it raining heavily, she was early to his 8:15am appointment.

Paxton weighed 15lbs 9oz today, a little less than his last weigh in due to his having just eaten at that time. His oxygen saturation was 89. This was better than Susanne had been expecting. Paxton's pediatrician thought that he looked incredible. She noticed right away that his respiratory rate was much improved. He seemed more relaxed and comfortable in this environment than he ever had been in the past. She was impressed with how much better his heart sounded. He used to have an extremely loud murmur, but now it was difficult to even detect. This was all due to the newly formed tricuspid valve actually functioning more normally. What an amazing thing!

The pediatrician assessed Paxton's incison to see how well it was healing. Susanne brought it to her attention that part of the sutures that shouldn't be visible were sticking out of the very top of his incision. This was preventing the skin from healing together because it was in the way. The skin around this area was inflamed and irritated. The veterinarian in Susanne wanted to clip the ends off with her suture scissors that she had at home, but the mother in her told her to wait until she spoke with the doctor. Thankfully, the pediatrician was able to remove it. Susanne was so relieved.

At the end of the appointment, Susanne had to break the bad news that they were moving. Scott had found a job in North Carolina. He was already down there getting adjusted and learning the ropes of his new place of employment. They had to cut the conversation short because they both were getting very emotional. Paxton's pediatrician had been the biggest advocate for him since day one. She never gave up on him and fought to get him the care he needed. Susanne was so greatful that she had her in her life. She felt blessed that they had crossed paths. They would definitely keep in touch. Susanne could foresee that they would be lifelong friends.

Paxton decided to clean out his system at the end of the appointment. Susanne went to change his diaper and realized that she did not have any diapers. She was so bummed because she had been doing so well this morning until this bump in the road. She could not believe that she didn't think to refill the diaper bag before she left. For the first time ever, Susanne had to use a burp cloth as a makeshift diaper. She wished that she actually knew how to assemble a cloth diaper because that would have helped her in this situation. Susanne only had a couple errands to run before heading home. Hopefully, the faux diaper would hold up.

Unfortunately, Paxton couldn't hold it until they got home. The faux diaper absorbed what it could, but he did leak a little onto his outfit. Thankfully, it was only a wet diaper and nothing more. After Susanne put him in a real diaper and a different set of clothes, he was ready for a nap. He could hardly keep his eyes open. He ended up sleeping for hours. All of the morning activities had tired him out.

They took it easy for the rest of the afternoon. Susanne worked with Paxton in between naps on some of the new skills that the therapist had shown her. He was doing well overall for just having had heart surgery three weeks ago.

Paxton was falling asleep between 7:00pm and 9:00pm every night. Tonight was no exception. The only difference was that recently he would wake up randomly wailing at the top of his lungs. Susanne was thinking that it had to be secondary to his reflux because of the signs he would show when she would go to scoop him up out of the crib. He would respond well to being held, but sometimes it would take longer for him to settle down enough to go back to bed. No matter what, Susanne could always get him to smile. This was how she knew he was okay.

Trial Run

Paxton's nurse came early today, which was never good for Susanne because she didn't have time to finish getting ready. His nurse would just have to deal with her wet head and unpolished face.

Today, Paxton weighed 15lb 11oz. This was the first time that he had gained weight in over a month. This weight was taken after one of his morning feedings, but the nurse knew that all eight ounces was not from the food. Before Susanne got too excited, the nurse cautioned her to monitor for evidence of edema or fluid build-up. She was worried that the weight gain was more likely from his body adjusting to the decreased dose of diuretic and his body might be retaining the extra fluid. She was going to keep a close eye on him. He still had a nurse coming to the house twice a week for evaluations. Hopefully, they would be able to catch a trend early and address it sooner than later if it were to become a problem. Paxton's G-tube site still appeared irritated. It continued to look inflamed underneath where the MIC-KEY button rested against his skin. This was mainly a result of moisture that would get trapped. Susanne had been religiously cleaning around the site daily. She was thinking that she would need to get creative to address this neverending issue. She did have gauze that was designed to fit well around the G-tube. She would just need to make sure to exchange it out twice daily so that the stuff that was oozing from the stoma wouldn't cause worse irritation or infection.

The nurse was impressed with his activity level. She thought that he was pretty energetic for just having had open heart surgery. This made Susanne's heart warm that he was recovering so well.

Later in the evening, Paxton and Susanne decided to go visit Julie. Susanne wanted to make sure to see the nursery before she had her baby. The special day was approaching and they were all very excited. Paxton couldn't wait to meet his new best friend. They did have to inform him that he would have to wait just a little bit longer because Julie wasn't due until the end of December. Susanne was amazed at how organized Julie was. Everything that she had received from her first baby shower was already put away. She appeared to be trucking right along. During their visit, Julie got to preview what things would be like in the not so distant future. She held Paxton in the chair she would hold her baby in and she placed Paxton on the changing table to try it out. This made it all become more of a reality for her. As a result, she was a little anxious, but she didn't let it overshadow her excitement. Susanne and Paxton definitely approved of the nursery. Julie was set to go...all she needed now was her baby!

Paxton likes to eat, eat, eat...apples and bananas

It had been three days since Paxton had tried his first bite of solid food. Susanne wanted to add in a new food today since he had been doing so well with the bananas. She decided to give him a taste of apples for the first time. It was actually a big hit. He seemed to enjoy them more than the bananas. It was still an extremely slow process. Susanne was only able to get to swallow about a teaspoon of the food. She would offer him a very small spoonful that he would hold in his mouth for minutes at a time before he was forced to swallow it. She knew that they had a long road ahead of them, but she knew that practice makes perfect. She just hoped she was right.

All day Susanne got stuck singing the "Apples and Bananas" song to Paxton. He seemed to enjoy the sheer silliness that came out of her mouth.

I like to eat, eat, eat apples and bananas
I like to eat, eat, eat apples and bananas

I like to ate, ate, ate ay-ples and ba-nay-nays
I like to ate, ate, ate ay-ples and ba-nay-nays

I like to eat, eat, eat ee-ples and bee-nee-nees
I like to eat, eat, eat ee-ples and bee-nee-nees

I like to ite, ite, ite i-ples and by-ny-nys
I like to ite, ite, ite i-ples and by-ny-nys

I like to ote, ote, ote oh-ples and bo-no-nos
I like to ote, ote, ote oh-ples and bo-no-nos

I like to oot, oot, oot oo-ples and boo-noo-noos
I like to oot, oot, oot oo-ples and boo-noo-noos

:)

Last Day of Work

Today was technically Susanne's last day at work. She was sad that she would have to say goodbye to everyone again. By this point, her co-workers were more like family than friends. It made her sad to think that this chapter of her life was coming to an end.

When Susanne arrived at work, her appointment schedule was blocked off. She had no official appointments booked. She still hung around to see if she was needed. It was slow for a Saturday. This was definitely a sign of the season change. Since it was so dead, she was able to tie up a lot of loose ends before heading out. She would miss this place. It was nice to know that she would always be welcomed back with open arms.

As Susanne was finishing up a few things, she got a little concerned because she noticed that there were a few people at work that had been fighting off colds. One person even recently had the flu. The last thing that Susanne wanted to do was to bring any of this home to Paxton. She was under strict orders to avoid taking Paxton any place where there was a large group of people. He would be recovering for another six weeks and she didn't want to compromise his health in any way. From day one, the doctors had highly recommended that Susanne try very hard to prevent Paxton from getting sick. They all felt that if he even got the common cold, then he would more than likely have to be hospitalized. This wasn't an option. Paxton had already been in the hospital plenty in his lifetime thus far. He did not need to add to this by any means.

Susanne decided to run a few errands before heading home since she did not have Paxton with her. It was so much easier to run in and out of places when it was just her. Moppy was watching Paxton. She loved any excuse to get extra time with the bug.

When Susanne got home she thought it would be nice to take Paxton and James on a walk since it was so beautiful outside. She rarely got out of the house unless it was for one of Paxton's appointment so this was much needed. She invited Moppy to go along. They spent time walking around a couple of the lakes that were in the neighborhood. There was nothing quite as wonderful as getting some fresh air. It always put a smile on Susanne's face as well as James'.

I'm Too Excited To Sleep

Paxton was starting to not sleep as long at night as he had when they first got home from the hospital. More recently, he hadn't really been falling asleep until during his midnight feeding. He would toss and turn up until that point. This morning, he woke up around 7:30am. He was bright eyed and bushy tailed and ready to play. This didn't allow for Susanne to put her head back down after his 6:00am feeding. Despite being in a complete daze, she honored his wishes. They were silly all morning.

Susanne had to try to get ready sometime between reading books, squeaking toys, and talking gibberish. Paxton was having another nurse stop by today to check in on him. They wanted to make sure that he was still doing well since the last visit a few days ago. They were most interested in monitoring his weight and his vital signs.

The nurse ended up calling because she was running about an hour behind. By this time, Paxton was tuckered out. He decided to go down for a nap right before she got to the house. In the meantime, Susanne was able to finish getting ready and get a few things done around the house. This was such a relief.

Finally, the nurse showed up. She was able to take Paxton's heart rate, respiration rate, and temperature while he was still sleeping. Shortly after she was finished with his vitals, he woke up. He stared at the new face very intently. He wouldn't break his gaze. She fell immediately in love with Paxton. She thought he was the most beautiful baby she had ever seen. She was very thorough with her evaluation. She not only assessed his vital signs and weight, but she assessed his developmental status. She encouraged him to reach for toys and grab them. She checked to see if he would track a toy that she would move around. She observed his ability to lift his head during tummy time. She tried to get him to reach for his toes and hold them. Also, she checked his G-tube site and the other healing incisions thoroughly. She gave Susanne a lot of pointers to follow when monitoring for proper healing. Almost every one of them was exactly what a veterinarian would tell a client to look for on their pet after an operation of any kind. This made it easy for Susanne to understand what she should look for. It was so wonderful to have a trained professional stop by to check in on Paxton. It gave Susanne peace of mind that he was still recovering as well as could be expected. He was so amazing.

The rest of the day was uneventful. Paxton napped on and off throughout the afternoon. He was gearing up for a special guest.

Chief stopped by in the evening to check in on the bug and bring him his very own copy of "The Berenstain Bears and the Spooky Old Tree". It was quite appropriate for the season. Chief informed Susanne and Paxton that this was a very special book because it was one of Scott's favorites growing up. It was read to Scott throughout his childhood. Whenever it was read to him, he always wanted to be the "one with the light". After Paxton spent some time playing on his play gym, Chief read him the story. Paxton wasn't even scared. It seemed like a big hit. Susanne was definitely looking forward to reading it to him again and again.

That is Bananas...B-A-N-A-N-A-S

Paxton had his first follow-up appointment with his cardiologist this morning. Susanne had to set up his feeding in the car for the ride over and also on the way back. She almost felt out of practice because she had not had to do that in awhile since Paxton had been in the hospital on and off for the last two months. Luckily, she left the house with plenty of time to spare.

Paxton continued to weigh right around 15 lbs, 4 oz. He had not really gained any weight for a few weeks. Susanne was initially concerned, but the cardiologist said that they expect patients who have had recent heart surgery to actually lose weight. She was more than thrilled that he had maintained his weight from before the surgery. His oxygen saturation levels were still within the mid-eighties which was to be expected as well because they had left the hole between the two upper chambers of the heart open. He was still circulating mixed blood throughout his body for the time being. The cardiologist was so relieved that Paxton looked so awesome. She thought that his color looked good. His heart rate and respiration rate were actually within the normal range for an infant his age. This was all so amazing. His new big boy heart was doing well.

During this appointment, Paxton got a follow-up ultrasound of his heart since it was already two weeks post surgery. Overall, the new and improved tricuspid valve was working well. For the first time in Paxton's life, it was doing the job that it was designed to do. Also, the Glenn shunt was intact and helping Paxton out tremendously to get enough blood to his lungs. There was still moderate dysfunction of the right ventricle. It did not seem to be improving much at all. The hope was still that the right ventricle would gain strength and become more normal over time as Paxton got older. There were no guarantees, but Paxton had continued to beat the odds thus far so it wasn't worth giving up hope now.

After two hours, they were finally finished with the appointment. Susanne was able to get Paxton home and down for a nap before his next appointment with his occupational therapist. Susanne was excited for today's session. It would be the first time that they would attempt to offer Paxton solid food by mouth. He had never been able to handle liquids in the past whether it be water or breast milk, but the therapist thought he was ready to try something thicker in consistency. They already knew that he wasn't able to swallow normally, which was why he tended to panic when any fluid was put in his mouth. They were hoping that with the pureed food, he would be able to take more time to figure out what to do with it.

Paxton was so exhausted from the appointment this morning that he was still sleeping when the therapist arrived. Susanne had to wake him up right before they started. She hoped that this would not hinder their plans for Paxton. They started slowly by doing some facial massage first. He was resistant at first and even cried just a little bit. Once he was allowed to wake up some on his play gym, and had cleaned out his system, he was ready to go. The therapist had brought pureed bananas to try as his first solid food. He was more accepting of the food than either of them had anticipated. He seemed curious and would move his tongue forward to taste it. Also, he actually opened his mouth when they would bring the spoon towards his mouth. They gave him about ten tastes of the food before they called it quits for the day. They didn't want to push him too hard especially since it was his first time. They wanted it to be a positive experience so they ended on a good note. The most encouraging part of the entire session was that he didn't gag at all and he actually swallowed the pureed bananas...even if it did take him few minutes. Way to go Paxton!

Things are Looking Up

Paxton was scheduled to have a skilled nurse from a pediatric nursing service stop by the house to evaluate him twice a week for a minimum of three weeks after being discharged from the hospital. The goal was to aid us with the transition from the hospital to the home. Today, the nurse had Susanne fill out a bunch of paperwork before she examined Paxton. She wanted to make sure that he was thriving and recovering well postoperatively. She was impressed with how good he looked. She said that he looked the best out of any of the infants she had ever evaluated after a heart surgery. She thought that it was spectacular that he had maintained his weight. His energy level and attentiveness were very encouraging.

The nurse gave Susanne a lot of pointers on G-tube care and management. She even had some tricks of the trade because her own son had a G-tube for years. It was nice for Susanne to get the inside scoop since the nurses that discharged Paxton after it was placed didn't really know what to tell her to do.

Susanne was thrilled that all of Paxton's vitals were finally within the normal range. She was finally feeling like things were looking up.

Come One, Come All

Paxton had another peaceful night of sleep. He ended up getting a little over fourteen hours of shut eye. He didn't even budge until 12:30pm today. He was catching up from all of the sleep he lost while in the hospital. He was poked and prodded at least every hour during his stay. If it wasn't a temperature, they needed to get a blood pressure. If it wasn't a diaper change, they needed to measure his abdominal circumference. If it wasn't giving medications, it was setting up a feeding. It was common for Susanne to rock him until he was sleepy and then make sure he was snug as a bug in a rug in his hospital bed. She knew that the second that she tucked in the last corner of his blanket, someone would come in and undo it all for some reason or another. If Susanne was sure of one thing, it was that he needed his sleep.

Aunt Julie stopped by to drop off a pumpkin for Paxton later in the day. Julie picked it out just for him because it had a scar on the outside just like Paxton. The pumpkin was just as unique and special as Paxton was. It was such a lovely gift and Paxton loved it. She got to visit with Paxton for a little bit and was able to see all of his new big boy scars. She was shocked to see how well everything was healing. Julie agreed that he seemed more active and alert than before the surgery. She thought he looked like a different baby. Susanne was excited that she came by. It was amazing how good she looked for being in her third trimester. Julie's baby bump had grown significantly since the last time she saw her. It was finally a reality that her time was near. Susanne and Julie couldn't wait for their sons to meet each other. They were going to be the best of friends just like their moms were.

Later in the day, Paxton had some more visitors. Some of Scott's closest friends from high school, Anne Marie and Vince, were in town and were able to stop by to meet the little guy. They currently lived in Arizona and were hardly ever out this way. It was such a treat to see them and catch up. They were so honored to finally get to meet Paxton. They had been following his journey since day one. Both of them thought he looked amazing for what he had just been through. Paxton was very social during their visit. He carried on multiple conversations with them.

Susanne loved having all of these visitors stop by to see Paxton, but she wished that Scott could be here too.

Sleepy Head

Paxton slept from 11:30pm last night until 1:30pm today....enough said!

Leaving on a Jet Plane

Paxton was being discharged today. YAAAAAYYYYYY! Against all odds, Paxton was recovering beautifully. He had stumped all of the doctors and nurses with how well he was doing. Susanne couldn't wait to get him home.

Moppy refused to let Susanne attempt her journey home by herself. Moppy gave her a good talking to before she left on Tuesday. She made sure to make it clear that even though Susanne had proven to be Superwoman many times in the past, Moppy would have a bone to pick with her if she did not allow her to help with the travels home. Susanne followed her strict orders. Moppy ended up flying back up to Boston this morning. She arrived at the hospital relatively early. She got to be present for the impressive reviews that Paxton was getting from the cardiologist. They were ecstatic with his progress thus far.

Once Paxton was at home, he would need to have a follow up appointment with his local cardiologist within the first week and his local pediatrician within two weeks. He would also be scheduled to have a private duty nurse make home visits twice a week for at least three weeks to monitor his progress. This would allow for a medical professional to be able to pick up on any subtle signs that there had been a change in his status. Paxton would also start his in home therapy sessions twice a week. Paxton would pretty much have some sort of appointment every day of the week. It was back to the same old, same old.

After the nurse went over all of the discharge instructions and gathered all of his medications, they were free to go. Moppy and Susanne had lunch before they headed over to the airport. They got out of there around 3:00pm. This gave them plenty of time to get to their gate. Susanne was hoping that the check-in process and getting through security would be a smoother process this time because they had a special letter. This letter of medical necessity had been written by Paxton's doctor informing the airline that he had just had open heart surgery and had increased medical needs. They requested their cooperation to allow for an expedited security check for the family. Susanne was pleasantly surprised with their response. They were met by an official from the airport whom escorted them to the airline counter. He explained their specific needs to the airline employee and requested specific seats for them so that they could get on and off of the plane a lot easier. He assisted them with their luggage and he escorted them down to the security gate. He had them close off an entire section for them to give them sufficient time for the baggage and passenger security screening. This helped them out tremendously. In the past, Susanne had done this entire process by herself multiple times. The TSA employees generally had zero patience for the time it would take Susanne to get through security even though she had an obvious reason for it, like having an infant with special needs. She was relieved this time because she had extra hands and the gentleman that had helped them through the whole process kept reiterating to take their time. She was extremely thankful that he was so helpful. They were at their gate in no time. Success!

They were supposed to board the plane at 5:00pm, but that time came and went. They waited and waited and waited. It wasn't soon after that when they overheard that there was a two hour delay with their flight. This was not what they wanted to hear. They finally boarded the plane thirty minutes after they were already supposed to be home. Once they got on the plane, they sat for another hour before they took flight. By this time, everyone was fit to be tied. Not only were the surrounding passengers sassy, but the flight attendant had a little attitude herself as well. Susanne and Moppy found it entertaining. Paxton did a phenomenal job especially with how tired he was. He didn't cry the entire flight home. This would be his fourth flight where he was quiet and cooperative the whole time.

Finally, they landed safely at BWI. This was their final destination because this was the only airport near the Washington D.C. area that had flights coming from Boston that were a reasonable price. Still having at least an hour long drive home would typically not be a big deal, but they had already had such a long day. They got on the road and were looking forward to getting in their own beds, especially Susanne who had the permanent marks on her back from the springs in the hospital bed. They quickly found out that their beds would have to wait a little longer. Moppy accidently took the wrong turn. She had admitted that she continually made the same mistake over and over when coming from BWI. It was confusing to know which way to go on the Capital Beltway. It took them a while to figure out how to renavigate their path, but they soon found their way. When they only had about ten minutes left in their drive, Paxton started wailing. He was drenched in sweat from being overheated. Nothing that Susanne did seemed to comfort him. She wished that she could pick him up and hold him, but that was unsafe as well as illegal. Once at home, Susanne took Paxton right up to bed. He fell asleep within minutes of his head touching his mattress. He was going to sleep well for sure!

Looking Good

When Paxton was moved to the intermediate care unit, he went from having an entire room to himself to having to share the space with another patient. Susanne was used to this because four out of the five times Paxton had been hospitalized, he had to share his hospital room with someone else at some point. This time Paxton's roommate was one month old. He had a congenital heart defect that had required surgery pretty soon after he was born. He was recovering well, so much so that the plan was for him to be discharged tomorrow. The mother of the child had been staying in the room with the baby every night just like Susanne. Over the last few days, Susanne got to know more about this family. Unfortunately, the mother had been deemed unfit to be a parent and would be going home today without her baby. The boy would be transferred to a foster home tomorrow with minimal visitation rights until the mother cleaned up her act. The father in the situation was also deemed unfit. He was currently on probation for a misdemeanor of some sort. He was only allowed to visit once with his child and he had to be supervised by a police officer the entire time. Susanne gathered that they both appeared to genuinely care for their baby, but they didn't have the innate ability to read his cues. Throughout the last few days, Susanne noticed other problems as well, like the fact that the mother would not even wake up when her baby would cry overnight. Her baby would cry one to two times a night and no matter how long or how loud he cried, his mother would not budge. The nurses ended up setting up a deal with Susanne. They requested that she page for them when he would cry so that they could take care of his needs. They were all continually shocked that the mother never did wake up anytime the baby cried. How sad! What was even sadder was that Susanne couldn't sleep because the other mother snored so loudly! Susanne didn't have ear plugs so she resorted to putting cotton in her ears that the nurse provided, using headphones that she got from her flight, and covering her head with a fleece. Nothing seemed to help. Could someone please get a Breathe Right Strip...STAT!

Paxton had multiple doctors stop by his bedside to evaluate his progress. Today was the first time they had mentioned that he may be able and ready to be discharged tomorrow. Susanne was in disbelief. She had been told many times before that Paxton would need to stay in the hospital a minimum of two weeks with the potential of it being closer to a month. Since Paxton was recovering so well, the doctors could not think of any reason to keep him longer. This was awesome news, but she needed to start looking for flights ASAP.

Susanne got to bathe Paxton for the first time since his surgery. His nurse helped her to make sure she didn't get his incision or catheter wet. He seemed to feel much better. After his bath, he got a new hospital gown...or as they call them in Boston, a Johnny. Paxton always looked super cute in his Johnny.

Susanne had to take Paxton down to radiology for another chest x-ray. It was a good excuse to take Paxton for a walk in one of the hospital strollers. Paxton had a grand old time. He was smiling the entire way down to the second floor. After the cardiologist had a chance to review the radiographs, he informed Susanne that they were looking markedly improved. There was only mild edema present. The diuretic was doing a good job of removing this excess fluid out of his lungs. The heart size looked tremendously better, which was a result of the recent surgery. What wonderful news.

A pediatric psychologist through the cardiac neurodevelopmental program stopped by to do an assessment on Paxton. She spent an hour interacting with him trying to get a reliable picture of his developmental status. She showed him a variety of toys and evaluated his ability to track their movement. She read him a book to see if he was processing what was on each page. She revealed a series of pictures and would rotate which images she would show him to see how long it would take before he lost interest. She observed Paxton's movements when he was trying to play. She noted his ability to grab, reach, and swat at toys. She had Susanne try to elicit a smile and even a laugh. Luckily, she was successful. Paxton also participated in a conversation of cooing with Susanne. He was such a ham. He did his best to show off his skills. Hopefully, by the time Paxton came back in for the next assessment, he would have continued to improve greatly. The reason that this program even existed was that over time they had found that infants born with congenital heart disease that were hospitalized in the cardiac ICU at birth were at greater risk for developmental delays or deviations. Their end goal was to be able to detect these issues early and address them to try to prevent negative long term effects.

Susanne was excited that she would possibly be taking Paxton home tomorrow. This would be such a huge milestone in his journey. Now she just needed to get to bed so that the big day would come sooner than later.

Drug Induced Sleep...Again

Paxton had a rough night last night. He would wake up from a dead sleep wailing in pain. He was uncomfortable, but it was hard to exactly tell from what. Susanne had been noticing that his stomach had been more distended recently and he was more flatulent than he had ever been before in his life. Over the last few days, the nurses had been giving him glycerin suppositories, stool softeners, and Mylicon to try to alleviate the problem. Unfortunately, it did not seem to regulate itself out. Even though this was one of the major issues that had developed over the last few days, Susanne did not think that this was the reason that he was waking up randomly in the middle of the night. Susanne's suspicion was that it had more to do with the discomfort from the headaches he was experiencing and also the pain from the surgical site itself. Susanne had to keep reminding herself that his sternum was broken to gain access to his chest cavity. A broken bone of any kind could not be a pleasant feeling.

Paxton calmed down everytime that Susanne would hold him. This made Susanne so happy that she had decided to stay in his hospital room with him. She was still amazed that some mothers could sleep right through their baby screaming their head off. Last night was the second time that Susanne had to page for a nurse to come and comfort Paxton's neighbor because his mother slept right through his cries. It was all so very sad.

Paxton last went to bed around 2:45am. Susanne was hoping that both her and Paxton would be able to catch some sleep before they had to relocate for his tests this morning. Susanne had set her alarm for 7:00am so that she could ensure that she would be ready to go with Paxton for his procedures. She always had to add in a sufficient amount of time for pumping. This always took anywhere from twenty to thrity minutes from the beginning to the end. Overall, Susanne still felt that it was all worth it so that Paxton could receive the best possible nutrition available. She had been reminded of this since the first day they got to the hospital. Most of the doctors and nurses commented on how awesome it was that Susanne was still pumping and how it would pay off for Paxton in the long run. They all gave her kudos for keeping up with it since Paxton didn't take anything by mouth and he was still being feed strictly fortified breast milk as an eight month old. This made her even more motivated to continue on.

Almost exactly at 8:00am on the nose, the nurse came in to transport Paxton to a different floor. Surprisingly, Susanne was ready to go. She had to sign a couple of consent forms for the anesthesia and then they were on their way. Paxton was fit to be tied because he was woken up out of the deep sleep that he had tried so hard to get. He had his gagging and retching routine, which scared everyone, but Susanne. Once they were in the room where he would be anesthetized, Susanne worked hard to comfort him and finally got him to settle. Shortly thereafter, Paxton was given sedation to take the edge off before he would be put under. He always looked so peaceful after they gave him those drugs.

Susanne sat in the waiting room for about four hours. Unfortunately, this time she was alone. The waiting was always the hardest part. Once Paxton was back in the recovery room, they called Susanne to come back to be with the little guy. She was able to hold him and comfort him as he was waking up. She rocked him in the rocking chair for almost an hour before the anesthesiologist allowed him to be transported back upstairs to his hospital room. He was quite happy once he woke up completely. He was talking a lot and Susanne was even able to get him to laugh some.

When they got back to his room, Susanne changed his diaper and put him to bed. He took a long, peaceful nap for at least a couple of hours. After he opened his eyes, Susanne spent some time playing with Paxton. She sang to him, played peek-a-boo, gave him a baby massage, and made him giggle a lot. Once he started showing signs that he was getting tired again, she read him a couple of books. She was able to halfway lay in the bed with him. He loved for his mommy to be so close by.

He had a pretty low key afternoon. Susanne was able to get him back on somewhat of a schedule. The nurse even transitioned him over to his normal bolus feedings, which was another step in the right direction. Paxton was recovering like a rockstar. What a superman he was!

How Does One Deal With the Loss of a Child?

Never in a million years did Susanne ever think that she would be writing a sympathy card for someone that had lost a child. There couldn't possibly be anything more devastating in the world. Susanne stumbled upon this awful news on accident when she went to drop something off for the parents of a sweet baby boy named Sam Oliver.

She had met his lovely parents last week when she was up in Boston for Paxton's pre-op work up for his heart surgery. They were staying at the same house that Leah and Susanne were at. Surprisingly, they were the first people that Susanne had spent time talking to that were going through a similar experience as her. It was actually very comforting to hear that she wasn't alone in this world. It was also nice to have her feelings and emotions validated. She often questioned whether her thought process was appropriate at times. She found it difficult to always be positive about her situation, which often lead her to be very hard on herself during those weaker moments. It broke her heart to know that there were others out there experiencing the same struggles and challenges that she was. She got to learn a lot about Sam over the course of the week. She even saw pictures of their sweet angel. He was about as old as Paxton and had been on a similar journey as well. She was hoping nothing but the best for their whole family.

Everyone got to meet Sam's parents when they came back up with Susanne and Paxton for his cardiac surgery. Their story hit a little too close to home for all. Without a question, they were all put on the evergrowing prayer list. Scott and Susanne kept crossing their path throughout the week. It was almost as if God purposefully put them in each other's lives for some reason. They were able to lend each other as much support as they possible could, given their individual circumstances. In talking with the parents, they got to learn even more about little Sam. He was so strong and had been through quite a bit for such a young guy. He was almost three weeks out from his latest heart surgery, but still required the assistance of a heart and lung bypass machine. It was something called ECMO, extracorporeal membrane oxygenation, which pumped his blood out of his body through a membrane that removed the carbon dioxide and then added oxygen. The oxygenated blood would then be returned to him. Unfortunately, without this machines assistance, he would not survive on his own. The hope was that eventually he would be strong enough to not need it, but at this time...his life depended on it. As the weeks went on, his kidneys began to fail and one of his lung lobes became consolidated. He was truly fighting for his life. Throughout this entire time, the parents never left his bedside. They would read to him and hold his hand. They would kiss him and talk to him to give him comfort. It was so unbelievable that he was now no longer with us. Susanne just prayed that they would be able to dig deep to continue to fight through the pain. She knew that the heartache would be overwhelming, but hopefully the fond memories of sweet Sam Oliver would get them through.

All By Myself

Paxton was up every three hours last night. He had difficulty getting comfortable and falling asleep despite being given oxycodone. The solution to the problem was Susanne holding him in her arms for hours on end. He always seemed to feel right at home in the crease of her arm. They rocked the night away together.

Moppy headed over to the hospital in the morning. She watched all of Susanne's belongings while she took Paxton to get an x-ray of his chest. Since he was a patient that was in the hospital, they got in and out of there. Susanne had to constantly request the appropriate amount of personal protective equipment for herself during the x-rays. It was amazing how they didn't follow the same standards of care that was required in veterinary medicine. As long as Susanne could remember, she had never been offered anything more than the lead apron. In reality, she should also have a thyroid shield and lead gloves. She felt bad for all of those parents who routinely assisted with their child getting radiographs taken that had not been properly educated on what really happened when one was being taken. Radiation accumulates over time and if their child needed as many radiographs as Paxton had in his lifetime thus far...there was enough room for concern.

Paxton had a consult with a neurologist today. The doctor wanted to assess him so that the neurology team could put the clinical picture together and try to interpret the brain MRI results from a couple of weeks ago. After they had time to put all of the information together, they reiterated their concern for an underlying genetic problem. They were aware that all of the previous genetics tests had come back within normal limits, but they were almost certain that there was something that had caused both the Pierre Robin Sequence and Ebstein's Anomaly to occur simultaneously...they just couldn't put their finger on it. The likelihood that two rare conditions were isolated events was difficult for them to believe. They could not think of any other diagnostic test to run to try to determine what the cause might be. They even mentioned that it might be a genetic problem that hadn't been discovered yet. So it wasn't too far fetched to think that there may actually be something called Paxton syndrome in the future. Needless to say, the results from the brain MRI revealed that he had thinning of the tissue that connects the right and left side of the brain which allows them to communicate and coordinate together. Also, there was a marked loss of white matter, which was one of the tissues that compose the central nervous system that was responsible for the communication between the grey matter regions of the brain and the rest of the body. They even noticed evidence of previous hemorrhage. The thought was that this may have occurred during his previous heart surgery when he was one month old, but they couldn't confirm it. All in all, they did not know what these results would mean for his future. They could not confirm whether he would have developmental issues as an adult or if he would be able to catch up at some point. It was so frustrating that there were still so many unanswered questions whether it had to do with his brain, his heart, or even whether he had a genetic disorder or not.

Moppy got to hold Paxton one more time before she had to head over to the airport. Her flight was later that evening, which was nice becaue she got to visit with Paxton all day. After today, Susanne would be all by herself until Paxton was discharged. Everyone would be missed greatly.

Moving On to Bigger and Better Things

Yay! Paxton was moving to a new room today. Susanne and Moppy made a breakfast to go so that they could get to the hospital as soon as possible. Paxton had a pretty uneventful night, but he was still battling occasional episodes of discomfort. All of the nurses made sure to monitor him closely. If there were any signs that he was in pain, they would give him medication that would provide some relief.

Since being switched from intravenous nutrition over to continuous feedings of breast milk through his G tube, Paxton seemed to be uncomfortable. He was experiencing something called ileus, which was a disruption and slowing down in the normal movement of the gastrointestinal tract. The decrease in motility caused him to digest his food less quickly, which resulted in him having some difficulty passing stool. He had a very serious, concerned look on his face and he would actually grunt as he tried. He really seemed to have to focus on the task at hand. These were all new behaviors that Susanne had never seen before. It was all quite funny to witness.

Moppy bought Paxton two new books to read. He immediately fell in love with one called "Sheep in a Jeep". He loved the pictures and thought the story was so silly. He was very engaged the entire time. He couldn't get enough of it.

Paxton had difficulty getting comfortable. It was hard to know exactly what was causing the main problem. He was irritable and needed a lot of consoling. Thankfully, he had awesome nurses. They didn't give up until they solved the problem.

Moppy and Susanne decided to bring over all of Susanne's belongings from the Devon Nicole House to the hospital. Now that he was out of the CICU, she wanted to stay with Paxton in his room. It was such a relief that she would be able to get back to more of their normal routine. She would be able to hold him when she wanted, change his diaper if it needed to be done, and most importantly, comfort him the way he knew so well when he cried. The freedoms that came along with moving out of the intensive care unit were always a sign that things were heading in the right direction. It was one step closer to being able to go home. Susanne made sure to make up all of the lost time that had occurred over the last few days. Paxton didn't seem to oppose. It looked like they were back to being peas and carrots.

Safe In Mommy's Arms Again

Moppy and Susanne headed over to see Paxton early in the morning so that they could be present for the wire study that he was having done. Before the doctors would even consider taking out Paxton's pacing wires, they wanted to make sure that his heart could handle functioning under normal conditions without them. The doctor came in and used the external pacemaker to increase Paxton's heart rate. At first it was to a level that it would usually be at without any medications on board. Then, he increased the heart rate to a level that one might see if Paxton was under stress. Thankfully, his heart handled the increased rate and the doctor was unable to induce any abnormal rhythms. This gave them enough evidence that Paxton was stable enough to move to the intermediate care unit. This was exciting news. All of the doctors, especially Paxton's primary cardiologist and his surgeon, were beyond shocked with how well he was recovering. They could tell that he was a strong boy with a killer instinct to fight.

Susanne was dying to hold Paxton. She had given up her opportunity to hold him yesterday so that everyone that was heading home could get a chance to snuggle with him before they left. It took everything in her to wait as long as she had. Finally, her time came. The nurse set her up in a rocking chair and handed him over. She loved talking to him, holding his hand, rocking him to sleep, but most of all kissing his sweet face. There was nothing more perfect in the world than holding her baby boy in her arms.

Later in the day, Moppy got to hold Paxton as well. She sang him all of his favorite lullabies. He would usually fall right asleep in her arms, but he just couldn't get comfortable. She ended up putting him back in his bed to see if she could get him to settle some.

The nurse informed Susanne that the milk supply that she had brought with her from home was running low. Paxton had been recently started on continuous feedings and the milk was going like hot cakes. Susanne knew that she would have to increase the frequency of how often she was pumping to try to keep up. Supply and demand baby!

All day, Moppy and Susanne kept missing the cut off for the cafeteria. They ended up eating dinner at Au Bon Pain, which was the Boston version of Panera Bread. They are really everywhere across the United States, but it just seemed to be overrepresented in this area. They decided to build their own salad, which was surprisingly delightful.

After dinner, they wanted to spend a little more time with Paxton before they headed back to the Devon Nicole House to do some laundry. Susanne got to hold him one last time before he went down for the night. It was such a relief that Paxton had the same handful of nurses for the most part throughout his time in the cardiac ICU. This definitely made it a lot better for everyone. It was nice that Susanne was starting to get to know them personally and gaining their trust. The nurses were also able to give him better quality of care because they were already well informed about his medical history and the tentative plan of action.

Sad Goodbyes

Scott and Susanne had a wonderful night together. It was so nice of Moppy to let them stay in her hotel room while she stayed with Poppy and Gigi at the Devon Nicole House. It definitely gave them time for some closure and much needed quality time. They were able to snuggle and watch a couple of movies before they passed out for the evening.

After they finished getting ready for the day, they headed over to the Devon Nicole House to meet up with the grandparents. When they arrived, breakfast was waiting for them and everyone was pretty much ready to go. They were all anxious to get over to the hospital because they knew that Paxton would be extubated today. This was exciting and scary all at the same time.

Within the first hour that they were at the hospital, the doctors gave permission to remove Paxton's endotracheal tube. They felt comfortable with this decision because he had been breathing well on his own overnight when they would back down on the ventilator. Susanne and Scott were allowed to be present for the extubation process. Scott was even given permission to videotape it. Paxton did extremely well throughout the whole thing. He definitely seemed relieved to have the endotracheal tube out of there. Thankfully, he did not have any complications after it was removed. Paxton received oxygen through a mask that was placed around his face for about an hour afterwards. He tolerated it well.

Paxton's nurse during the day decided to be super sweet and break the visiting rules of the cardiac ICU. She allowed all of the grandparents to be in his room with him at the same time that Scott and Susanne were in. Usually, only two people at a time were allowed to visit with Paxton and one of them had to be a parent. She decided to lift the restriction because she knew that Scott, Gigi, and Poppy had to leave today. This was very special.

Since Paxton was doing so well after he was extubated, the nurse felt comfortable enough to let Scott hold him for the first time since surgery. The most important thing to remember was the appropriate way to pick Paxton up and hold him. It was critical to take this seriously because it could cause him major discomfort, but even worse, destroy the handiwork of the surgeon.

Scott was elated to hold his baby boy. It was such a touching moment to watch Paxton stare at his daddy, but even more so when he reached out to touch his face. After a short while, Gigi and Poppy both had a chance to snuggle with the bug before they had to head out. Susanne was really sad that they all had to leave to go home. It had been so nice to have everyone there especially on the big surgery day. Their love and support was much needed and appreciated. Before they headed out, Gigi and Poppy gave Susanne a necklace with an infinity circle that had the word "FAMILY" written on it. She was instructed to wear it around her neck as a reminder that even if they could not be with her physically, they would always be with her in spirit. This was exactly what she needed to push through their departure. The hardest goodbye for sure was Scott. It seemed to happen all to often that Scott and Susanne had to part ways. They could not wait for the day when they could be with each other endlessly. They did not want to let go of their tight embrace and their sweet gentle farewell kiss was over way too quickly. They could only think of it like removing a band-aid...do it as quick as possible to lessen the pain. Nevertheless, it was a sad moment for all when they drove away in the cab.

After they left, Moppy and Susanne decided to spend more time with Paxton. Even though it was a difficult decision, they decided not to hold him since he had such a busy day. They wanted him to rest up as much as possible to help with his recuperation process.

When they finally decided to head back to the house, it was pretty late. They had not had a chance to have dinner yet, so they were on the look out for something to eat. The cafeteria in the hospital was already closed, so they thought they should check out the food court up the road. Much to their chagrin, every place had closed up shop with the exception of Sbarro, which Susanne could not eat. They were a little disappointed that the food vendors had all put everything away even though they technically had about ten minutes before they were actually supposed to be closed. Susanne's only saving grace was that she had leftovers back at the house.

A Little Faith Goes a Long Way

Paxton grabbed Susanne's finger for the first time last night since his surgery. It warmed her heart to know that even though he didn't have his eyes open, he knew that his parents were there.

Today, Chief had to leave early in the morning to head back home. The rest of the gang went to the hospital to visit with the bug. They did their normal routine of alternating turns with who would sit with Paxton.

Susanne and Scott were excited to see that Paxton was trying to open his eyes a little bit today. He was still heavily sedated and intubated so if he started to look the least bit agitated or too awake, then the nurse would give him more medication. Susanne and Scott could see that he was more uncomfortable. This was probably because the amount of pain medications he was being given was being adjusted so that he could start the process of slowly waking up by the time the doctors were ready to wean him off of the ventilator. It was so difficult to see him get out of sorts, especially since they could not hold him to comfort him.

Scott always reminded Susanne of a story he once heard in reference to suffering. In the story, a bear was minding his own business walking in the woods and then out of nowhere he got stuck in a trap. A hunter came along and saw the bear and felt horrible. Out of sympathy, the hunter wanted to attempt to free the bear from his situation. In order to free the bear from the trap, the hunter had to press the bear’s foot deeper into the trap in order to release the tension in the spring. The bear wasn't able to understand why the hunter was causing him more pain. The bear assumed that the hunter was cruel and that he intentionally wanted to hurt him. The bear just couldn’t understand that the hunter was actually trying to help him. He couldn't see past what he was going through in the moment. Suffering, in general, was usually like that. Susanne and Scott discovered that they could even apply this story to their entire journey thus far with Paxton. The thing to remember was that suffering was almost always temporary, although in the moment it felt otherwise. That was where faith came in. Just a little faith would go a long way and eventually the reason for the suffering would reveal itself.

Everyone left the hospital in time for them to go to the grocery store before dinner. Gigi and Poppy had wanted to buy Susanne some food that would tide her over while she stayed in the hospital with Paxton after they left Boston. They were always so thoughtful.

After a successful trip, they all went to dinner. They originally sought out a Mexican restaurant because that was always Susanne and Scott's first choice. The place that they found seemed like a good idea until the waiter couldn't even tell them what a fajita was or what it came with. He was also uncomfortable with Susanne's dietary restrictions and didn't seem confident that he knew what she meant when she requested her meal to be dairy and soy free. They all made the executive decision that it was best to leave and go somewhere else. Luckily, they found a local bar and grill just down the road that was perfect. Susanne ended up getting some dairy and soy free fajitas and they were delicious. Also, Poppy got to try Stella Artois for the first time and even went home with a souvenir beer glass.

Once again, Susanne and Scott made their final visit in with Paxton before heading back to the house for bed. It was confirmed that tomorrow would be the day to try taking him off of the ventilator. They would all be saying some extra prayers before bed.

There's Cause for Celebration

Paxton did well overnight. He was kept unconscious with the assitance of some good medications. The surgeon wanted to make sure that there was no possible way for him to pull out any of the numerous tubes or wires that were attached to him. Even moreso, they did not want him to reach a level of stress that may compromise the delicate surgery that had just been done the day before.

Scott and Susanne visited with Paxton for the better part of the morning. They made sure to bring him all of his lucky charms that they had with them during his surgery. Some were lucky charms that Paxton had with him since his very first surgery such as his Lucky Bear. Others were lucky charms that were given to Paxton from different people specifically for this heart surgery. He received an "angel of heart" pin from Gigi and Poppy. It was to be worn as a reminder that his heart was safe wherever he may go. Thorny gave Paxton a special shark's tooth that she had found on a beach. It was big and beautiful. It symbolized strength and power. She also gave him a necklace that she had found in Central Park that came with a note that indicated that whoever carried it would have a guardian angel watching over them. Lastly, Uncle Loonie gave Paxton a smurf figurine that had personal significance. He wasn't going to tell anyone what the meaning of it was until after Paxton came home. Scott also bought Paxton a new stuffed monkey for his collection. It had what looked like replacement parts for one of his arms, a leg, and his ears. It resembled Paxton somewhat because he had a makeshift heart. Now Paxton's bed was covered in luck.

Only two people were allowed in Paxton's room at a time, one of which had to be either Scott or Susanne. Throughout the day, they alternated with one another and took each of the grandparents to visit with him. Everyone was pleasantly surprised with how good he looked. Susanne had prepped them for the worst. She based her information on what her colleague had told her about her own experience with her child that had the Glenn procedure along with another type of heart procedure previously. This definitely helped them to be better prepared with what the expectation was postoperatively. The most beneficial piece of information that they were given was that Paxton would have severe migraines for a minimum of two weeks after the operation. The reason for this was because the blood that usually came from the head and upper extremities and entered the right side of the heart was rerouted to empty directly into the vessel that would take it immediately to the lungs. As the body tried to adjust to the new pathway for the blood, the patient would get those intolerable headaches. They were even told that despite Paxton being on strong pain medications, he would still be uncomfortable. Thankfully, he seemed peaceful at the moment.

The family was encouraged to get out of the hospital and enjoy the sites of Boston while Paxton was still out of it. Susanne and Scott had previously been to Boston and toured the city in its entirety. They thought that with their limited time the Duck Tour would be the best way for everyone to get the most out of Boston. The last tour was scheduled for 5:00pm. The tour was going to depart near the Prudential Center which was approximately one mile from the hospital. The crew left the hospital with what they thought was plenty of time. It was halfway through the walk that they realized that they would be cutting it pretty close. Scott's Droid indicated that the walk was going to take about 40 minutes. This was unbelievable to them. They all walked briskly to try to make it on time. Susanne even verged on a slow jog at one point. Unfortunately, by the time they made it to the ticket booth, it was too late. It was exactly 5:00pm and they had sold out of tickets. As always, they turned the pile of lemons into lemonade. They decided to take a nice walk through the public gardens and admire the beautiful landscape. They also visited the original pub that the show Cheers was based off of. As the sun set, they headed back to the Prudential Center where they went to the Top of the Hub restaurant on the 52nd floor to enjoy a few cocktails. It was a perfect place to see all of the city lights and the beautiful skyline. They spent a couple of hours reflecting back on the last few days. They were all so proud of Paxton for being so strong. They couldn't believe that the biggest surgery of his life thus far was actually over.

Later, Aunt Leenie's sister, Kathleen, and her boyfriend met up with everybody to help celebrate. Everyone then decided to relocate and grab a bite to eat at a restaurant called Stephanie's. They were well known for serving "sophisticated comfort food". They also had an exectutive chef that had previously won the Food Network's show CHOPPED. This was very exciting for Susanne since she was a Food Network junkie. The food was delicious, but the company was what made the evening so special.

Before heading back to the Devon Nicole House for the night, Scott and Susanne decided to visit with Paxton for a little bit. It was so comforting to see him resting peacefully even if it was because of medication. What an amazing day.

Paxton Finally Gets a Big Boy Heart

Susanne and Scott could not believe that the BIG day was finally here. It had taken the team of doctors so long to even decide what surgery Paxton would be having done. Now there was no turning back. The surgeon had an idea of what he wanted to do, but it would all depend on what Paxton's heart actually looked like once he got in there. Paxton had the most severe form of Ebstein's Anomaly. It was still unknown if he would even be a good candidate for the specific heart surgery known as the cone procedure. If he did end up qualifying for it, Paxton would only be the second child EVER with his type of Ebstein's to get it done. Dr. Del Nido was definitely the man of the hour. It was his time to shine. His masterful hands would hopefully change Paxton's life forever.

Susanne and Scott actually made it to the hospital on time today. They made sure to set three alarms to make sure that what happened yesterday did not happen again this morning. They had to be at the hospital by 7:00am to check in. Moppy and Chief came along for that part of the process. It actually worked in their favor because they were able to spend some extra time with Paxton before he had to head up to the surgery ward. The tentative plan was for the surgery to start somewhere around 8:30am. They knew this would be a long day.

After they checked in, everyone was relocated to the surgery department. Gigi and Poppy met up with them there once Paxton was assigned a bed space. The anesthesiologists stopped by to go over the plan with Scott and Susanne one more time and make sure they did not have any questions. After everyone got to hold Paxton and give him a few words of encouragement, a sedative was given through his G-tube. This made him really sleepy within about ten minutes. Shortly thereafter, Paxton was taken away. Everyone said their goodbyes and off he went. Scott and Susanne had a hard time letting go. They both made sure to hold him extra tight and made sure he knew he was loved. Even though it was painful to hand him over, they knew this was the best decision for Paxton and the appropriate next step in his journey. Nevertheless, they were still scared to death of just the thought of the complexity of the surgery he was about to undergo and the possibility of losing him. All they could do was pray and be hopeful.

After Paxton was out of their sight, everyone was escorted to the family waiting area. They were informed that they would be given updates hourly. This time they did not have a pager with a number to call back to get those reports. Instead, there was a liason between the surgery team and the families who would deliver the updates in person. This sounded better than what they had done in the past for previous surgeries and diagnostic procedures, but it actually made the anxiety level much worse. There were multiple other families waiting in this section of the floor. These families had children that were having surgery as well, but not necessarily heart surgery. Everytime a doctor, nurse, or pretty much anyone that looked official walked by...Scott 's and Susanne 's hearts stopped. They constantly wondered if the person walking by was looking for them to give them news. More times than not, a member from the staff would look in on them and then walk away after realizing they were trying to find someone else. The anticipation and suspense was unbearable.

Susanne had decided to pick a section of the waiting area that had a television because she needed background noise to try to help distract her brain. She remembered all too vividly the first heart surgery when Scott and Susanne were almost driven to the point of insanity with the waiting. Nothing could keep their minds off of Paxton. During the wait, Gigi and Chief took little cat naps, Moppy and Poppy read, but Scott and Susanne were just restless. They couldn't focus on any one thing for too long. The only thing that kept them positive and comforted was the presence of each other.

Time seemed to stand still. It was not going by fast enough. By the time the surgeon made the initial incision, it had been two hours already. What could be taking so long?! Even with Susanne having a deeper understanding of what truly goes on behind the surgery doors, it still felt like it was taking forever. She knew people weren't animals, but she was pretty sure that the set up for surgery had to be comparable. After about another hour and a half later, the surgeon was just getting ready to start the actual open heart surgery. Susanne and Scott appreciated the meticulous nature of the surgeon when it came to gaining access into the chest, but the suspense was unbearable. Right before the surgeon started the procedure, Paxton was placed on a heart and lung bypass machine to externally oxygenate his blood and help keep it flowing through his body while the surgeon worked on his heart. This was the moment Scott and Susanne had to just put their complete trust in God.

After about four hours of actual reconstructive heart surgery, the surgeon was ready to take Paxton off of the bypass machine and see if his heart could function on it's own. This was the moment of truth. Thankfully, all went well. Paxton's new and improved heart was kicking butt so far. Postoperatively, the cardiologist did an ultrasound of Paxton's heart by using a probe that went down his esophagus. This allowed him to get a closer look at how his heart was functioning and to assess how it was handling the changes thus far. The whole cardiology team was more than impressed by what they were able to accomplish. Before surgery, the outlook for what they would be able to do for Paxton was grim. Now, there was more than just a glimmer of hope.

The surgeon ended up doing a multitude of procedures on Paxton's heart.

First, he took down the BT shunt that was placed when Paxton was a month of age, which allowed him to survive up until this point. This procedure was temporarily used to transfer some of the blood going to the body and direct it to the lungs for oxygenation. This was what the cardiology team was waiting for Paxton to outgrow before moving on to the more long term corrective and palliative heart surgery.

Next, they performed the bidirectional Glenn procedure. This was a more permanent type of shunt than what Paxton previously had. In this procedure, the surgeon disconnected the superior vena cava, which was the vessel that carried blood returning from the upper part of the body to the right side of the heart. Then, he redirected its blood flow directly into the pulmonary artery, which takes the blood to the lungs. The inferior vena cava, which was the vessel that carried blood returning from the lower part of the body, was left alone. This portion of blood would still be pushed through the right side of the heart and then out to the lungs through the pulmonary artery to become oxygenated. In essence, this procedure allowed half of the blood to flow through the right side of the heart normally while the other half bypassed the right side of the heart altogether. This was why this procedure was referred to as the one and a half ventricle repair because the left ventricle was functioning normally and doing 100% of its job, but the right ventricle was only doing half of the work of a normal right ventricle.

The third procedure was the most involved. This was called the cone procedure, which had only been performed by three surgeons in the entire world. Dr. Del Nido was one of them. It was the procedure that was specifically designed for people with Ebstein's anomaly. After reviewing Paxton's results from the pre-op tests, the surgeon wasn't sure if he would even be able to perform this surgery on him because his form of Ebstein's was so severe. Basically, the three flaps that were supposed to form Paxton's tricuspid valve never peeled away from the inside lining of the right ventricle during development. As a result, Paxton's right ventircle was small and underdeveloped, whereas the right atrium was enlarged. Due to the lack of a properly functioning valve, Paxton's blood freely flowed back and forth between the two chambers of the right side of the heart. All of these issues combined, prevented any blood from getting to the lungs. This specific surgery was designed to make a functional tricuspid valve using the patient's own tissues. The surgeon's hope was to be able to dissect each individual flap away from the inside wall of the right ventricle. If this was successful, then he would try to suture them together in a way that it would form a cone-like shape. As a result, it would become a functional tricuspid valve. Luckily, his attempts were a success. This was truly amazing given the severity of Paxton's heart condition.

After he tackled the cone procedure, he then decided to remove the portion of the right ventricle that was currently functioning as right atrial tissue. This helped to reduce the heart size greatly.

Lastly, he partially closed the hole that was between the right and left atria, which are the upper chambers of the heart. He left a small portion open to function as a pop off valve to reduce any pressure build up from all of the reconstruction that was done to Paxton's heart.

The end result was miraculous. They were shocked to find that on the postoperative heart ultrasound there was only very mild backflow of the blood through the newly designed tricuspid valve. All in all, Paxton's heart was looking markedly better. Paxton now had a big boy heart.

Later in the evening, everyone was relocated to the waiting room outside of the cardiac intensive care unit. Unfortunately, they had to wait some more before they could see the little guy. The surgeon had talked to them briefly with his assessment. He was beyond pleased with how everything turned out. They were informed that he would be heavily sedated and on a ventilator for the next few days. Trying to wean him off of the ventilator would be the next challenge. All Susanne and Scott cared about at that moment was seeing him. That time finally came and they could finally breathe.

By Popular Demand...

We have received a number of requests from people interested in donating money, rather than or in addition to buying a t-shirt. There is now a button to the right specifically for donating money. Thank you so much to everyone who has already ordered t-shirts. We truly have amazing family and friends who continue to support us and Paxton as he continues to fight.

We're Late, We're Late...For a Very Important Date

Scott and Susanne were supposed to be at the hospital at 7:30am for Paxton to check in for his final day of pre-op tests. Scott had set his alarm the night before for 6:00am so that there would be no question about whether everyone would be able to make it on time for his appointment. Unfortunately, the alarm never went off. Luckily, Susanne's eyes popped open around 7:20am. She woke up because she knew she had been asleep for too long. It was rare that she got more than four to five hours of sleep at a time so she knew something was up. Once her brain registered what time it was, she jumped out of bed in a panic. She then woke up Scott. He was in a state of confusion as well. As he was rushing around to get ready, he was trying to figure out why his alarm did not go off. All he could gather was that when he woke up at 1:00am to turn off Paxton's feeding, he must have accidentally turned off the other alarm he had set for 6:00am as well. It was very difficult to try to get it together when they both had not had enough time to fully wake up yet. Scott managed to be ready to leave before Susanne, so he offered to get a head start to the hospital. Even though it was Scott's first time at Children's Hospital in Boston, he felt confident that he would be able to find the check-in desk at the admitting office with no difficulty. Susanne took him up on this so that she could finish getting ready. To try to help expedite the process, Gigi and Poppy offered to bring over the remainder of Paxton's bags and some breakfast so that Susanne could get over to the hospital as soon as possible. Scott quickly discovered that finding the admitting office proved to be more of a challenge than anticipated. He went up and down elevators, through hallways, and around corners searching for where he was supposed to be. Finally, Scott's cell phone rang. It was Susanne calling from the check-in desk. She had been waiting for them and was wondering where they were. He was clearly lost. She explained to him how to get to where he needed to go. After about another five minutes, they finally showed up. Susanne was relieved. So much for getting a head start...

Their day started similar to last week's day of pre-op tests. They were first sent to radiology for a chest x-ray to evaluate the heart and lungs. Afterwards, they were sent to an exam room so a nurse could get Paxton's height, weight, and vital signs. In addition, they got a current blood pressure, ECG, and oxygen saturation level. Paxton's oxygen saturation level was reading in the mid-seventies. This was a little bit of a concern for the cardiologist, but somewhat to be expected as he continued to outgrow his shunt. The biggest question of the day was whether Paxton should be admitted to the hospital for monitoring overnight or to just be admitted tomorrow morning before the major procedure. Luckily, his oxygen saturation levels looked more stable later in the day and he didn't have to stay.

Throughout the day, they met with each member of Paxton's team of doctors. Scott got to meet the anethesiologist, cardiologist, and cardiac surgeon. He, along with Gigi and Poppy, had the opportunity to ask any questions that they had about the upcoming procedure and post-op care. Everyone felt more at ease after the multiple discussions they had with each of them. Their day was so jammed packed full of appointments that Scott and Susanne didn't even have time to sit down to eat their lunch. They actually had to eat in one of the exam rooms during one of Paxton's appointments.

At the end of the day, a research team met with Scott and Susanne to see if they would be interested in volunteering Paxton for a study on stress hyperglycemia after major surgery and the effects it has on healing time. Of course with their science backgrounds, they supported this because it could help advance medicine in the future. It felt like their own little way to give back to the medical team that had done such an amazing job thus far with Paxton's care.

After they wrapped up for the day, they met up with Chief J and Moppy at the nearby hotel. They all spent some time talking about the expectations for the big surgery day and the state that Paxton would be in afterwards.

They all decided to go out to dinner before turning in for the night. Susanne made sure to let the waitress know about her dietary restrictions before ordering her dinner. She always presented as if she had the true dairy and soy allergy so that they would take it seriously. Surprisingly enough, they still messed up. Even though she had made it clear to the waitress and the chef prior to placing her order about her special needs and the chef picked out the dish that would be safe for her to eat, the chef still served her a dish covered in cheese. Thankfully, Susanne caught it before she took the first bite. Susanne and Scott made sure to express their concerns to the manager because if Susanne truly had an allergy, it could have been a fatal mistake.