Code Yellow

Susanne was unable to get ahold of the pediatrician yesterday, but she knew she needed to try again today because Paxton was up all night vomiting. Susanne was thankful that Scott had been there to give her an extra hand. Susanne had decided to give him a dose of Tylenol after the third time he woke up crying, gagging, and vomiting. He just seemed uncomfortable and he couldn't get settled. It seemed to have worked well the night before. He wasn't febrile so she knew she wasn't masking that symptom. She had been encouraged to give him a pain reliever as needed after being discharged from the hospital last month. Both she and Scott did not think that it would hurt anything with giving it another shot. Thankfully, it worked.

Scott and Susanne were both working off of about four hours of sleep. They had to get up relatively early because they still needed to pack the car. It was important to try to get this done in a timely manner because Scott and Poppy had a six hour drive ahead of them. No big breakfast this morning just something quick and easy. Poppy had left over cold pizza which they all agreed was an awesome choice. Poppy then held Paxton while Scott and Susanne shuffled through which clothes and books to bring down to NC with him. Paxton was a lethargic lump in his arms. He sat with Paxton for a little over an hour and the expression on his face never changed. It wasn't like him to not engage with people. He usually would laugh or smile without the person having to work for it.

Susanne finally got in touch with the pediatrician once the gang had left. She thought that it would be best if Susanne took Paxton to the emergency room for an evaluation instead of waiting until tomorrow. Her main concern was the bulging fontanelle, swelling around both eyes, and increased respiration rate. The things she wanted to rule out were primarily meningitis or a complication from the recent surgery. The other things she considered were a blood clot, tumor, and upper respiratory infection. Susanne took care of the animals and gathered a few items before heading out the door.

Susanne called Moppy and Colleen to see if they could meet her over at the hospital for support. She also thought it would be nice to have a second set of ears to pick up on things that she might miss if she became distracted by the situation. Colleen accepted the invitation and thought that she could be there in no time at all. Susanne arrived at the ER and knew exactly where to park because a couple of months prior Paxton was taken to the ER for coughing up blood. Just like always, Susanne had her arms full of stuff she would need for Paxton while they waited. She had his diaper bag, his feeding bag, the medication bag, the bag with his evening feeding, her purse, the car seat and the baby. She was fully loaded and Paxton had never felt as heavy. As she started walking toward the hospital, she saw the shuttle that took patients and their families from the parking lot to the front door of the emergency room within a few feet of her. She was so thankful for a service like this....that was until it pulled away and left her in the dust. Susanne was beyond mad. Despite being angry, she had to push on. She carried Paxton and all of his belongings along the long path that eventually lead her to the ER. By the time that she got there, she thought that she would need to be seen by the doctor as well for overexertion and fatigue.

The ER was hopping for a Sunday night. Thankfully, they did not have to wait too long because he was an infant. Colleen made it just in time to walk back with them to an exam room. Susanne was relieved to have her there. The doctor came in to take a look at Paxton pretty quickly. The nice thing was that the doctor actually knew them from when Paxton was in the hospital the first two months of his life. This made things a lot easier that she was already familiar with Paxton's medical history. Susanne had spent some time over the last week typing out a medical timeline of Paxton's history that included the hospitals he had been to, what services he had received, the duration of his stay, diagnostic tests that were done, and surgeries that had been performed. She also typed out the medications he was on, how much he was getting and how often he was getting them. She had no idea how handy it ended up being in a situation like this. It was definitely time well spent. Now the doctor could spend less time getting a history and focus on figuring out what was wrong with her sweet baby.

They started with a bunch of different tests. Over the course of a few hours, Paxton had nasal swabs taken, blood drawn, a urine sample collected, x-rays of his chest, and a CT scan of his brain. Unfortunately, Paxton was not happy about any of the above and it didn't help that they had difficulty collecting all of the samples. They collected nasal swabs to rule out the potential for RSV or influenza. They didn't get great samples because his nasal passages were dry. They tried to collect urine by placing a urinary catheter, but his bladder was completely empty. This was definitely a first for Paxton. They ended up placing a sterile bag to collect a sample as soon as he urinated the next time. Paxton had radiographs taken which also weren't pleasant for the little guy. He had seemed painful over the last few days in the neck and shoulder region. He got upset and cried when Susanne had to position his arms above his head for the x-ray. He recovered quickly once Susanne was able to pick him up and comfort him. The worst test by far was the blood collection. Susanne warned the nurses that he had awful veins and that most hospitals had to recruit their most skilled phlebotomist. The nurse tried for what felt like hours. She was unsuccessful with the first two attempts, but finally got it after using a Wee Sight Transilluminator. This was a special light that helped to locate the tiny veins in his arms and assist with the insertion and placement of the needle. Susanne had to hold an oxygen mask over Paxton's face while they attempted to draw blood because his oxygen levels kept dropping into the sixties and seventies from him being so mad. Colleen had to help restrain his legs so that he would be as still as possible. They were all relieved when that was over. Finally, they got a CT scan of his brain. Paxton had to be strapped down so that he would not move while the machine was collecting data. Paxton screamed bloody murder the whole time. He was not thrilled with having to lie still. The only positive thing that came from it was that he finally urinated out of anger so they got their sample.

For the next few hours, Colleen and Susanne waited to hear any news about the test results. During that time, Colleen entertained Paxton and tried to get him to forget about the torture he had just endured. Susanne spent this time snacking on some of the goodies that Colleen had brought for them. She was always so prepared and thoughtful. She had packed chips, strawberries, granola bars, water, and magazines...all of which were within the confines of Susanne's strict diet. This saved Susanne's life because she had not had a chance to eat dinner before she had left for the hospital. What would she do without Aunt Leenie? There was no one quite like her in the world.

Eventually, Colleen had to leave because she had to work early in the morning. By the time she left, the doctor had still not returned with any test results. Right before midnight, Susanne found out that Paxton would be staying the night for observation. She also learned that all of the tests that had come back so far looked good. They were still having difficulty finding a reason for his clinical signs. She was hoping to have more answers by tomorrow.

Something Ain't Right

Paxton got up today around 8:00am which was pretty typical for him. His usual pattern was to wake up for a short time between 6:00am - 9:00am for about an hour and then go back down for a nap. Today, he went back down, but he woke up within an hour from when he shut his eyes. He continued this pattern all day. Susanne had noticed that he was holding his head and neck extremely still. It almost appeared as if he had a stiff neck. He seemed to track his toys just fine and he appeared to have full range of motion. Susanne noticed that he seemed less active, however, which had been somewhat apparent starting on Tuesday. She also thought that the area under both eyes looked more swollen than they had been. She was wondering if something was wrong. He didn't feel febrile or look pale. Even though she couldn't put her finger on it, she was definitely going to keep a close eye on him.

Susanne worked with Paxton on tummy time. He just laid there the entire time. Susanne lightly grasped his head to help support it in extension. He immediately started wailing. He had never had that response before. She decided to take it easy on him for the rest of the day.

He didn't nap well at all. The most he would sleep was an hour before he would start crying. Susanne could not figure out what he was so upset about.

The therapist came over in the afternoon to work on feeding. Susanne had a buffet of food to offer Paxton. Susanne had mentioned to the therapist that over the last two days, Paxton had been gagging and vomiting after about three spoonfuls of food. He would get really worked up. He would start sweating and breathing rapidly. Luckily, as they started this session Paxton handled the little bits of food well. It wasn't until the very end of the session that he lost it. The therapist got to witness the change in his progress. She also commented on his quieter nature and the puffiness under his eyes. Susanne now knew that she wasn't making anything up. The therapist was also concerned. She had given Susanne some advice to see if those changes would improve his status. She wanted Susanne to consult with the nurse that was stopping by tomorrow to see if there was anything that she would suggest. If Paxton did not take a turn for the better within the next 24 hours, she would put in a call to the cardiologist.

Paxton took forever to get settled for the night. Right when Susanne thought he was down for the night, he woke up. Susanne tried to rock him and cuddle him, but that did not work. She did hear his stomach gurgle so she decided to vent his G-tube in case he had gas buildup. She did get a lot of gas to escape through the syringe, but he still seemed irritable. He would cry if she laid him down. He would cry if she picked him up. The only thing that calmed him was when she would sing. Susanne decided that she was going to add in Tylenol to his evening medication regimen. After an hour he was sawing logs. Susanne hoped that he could sleep peacefully for the rest of the night.

*Running on Empty

Paxton had a visit this morning from one of his nurses to assess his progress from last week. She was particularly interested to see if he had gained any weight from last week. Also, he had been having issues with some dependent edema. Basically, the side of his face that was down when he was sleeping would accumulate fluid and appear swollen especially around that eye. Once he was up and moving around, it would resolve. Susanne still felt like it was present despite the minor increase in the diuretic. She would let the nurse decide if she thought that it was concerning.

Paxton's vital signs all looked good. Susanne was pleased that his heart rate continued to be within the normal range. The best news was that he had gained weight from last Friday. Today, he was 15lbs 12oz which was four ounces more than what he weighed four days ago. This was relieving because of the scare of his recent weight loss. The increase in his feedings must have helped.

Once the nurse had left, Paxton was completely exhausted. He didn't really get to take his normal morning nap like he was used to. After Susanne put him down, she made some much needed phone calls to try to figure out the answers to her ongoing questions about transition of care for Paxton once they officially moved from Virginia to North Carolina. She had a lot of unanswered questions that both she and Scott had been looking into for weeks now. They kept discovering that nothing was straightforward. This moving process would be much tougher than they had originally suspected.

Paxton's occupational therapist showed up in the afternoon for a therapy session. Today, they worked on motor skills. Paxton had been up for about an hour prior to when she arrived, but Susanne had purposely kept his activity level to a minimum so he wouldn't be exhausted. Unfortunately, he could hardly function the entire time the therapist was there. During tummy time, his face was smothered in the wedge because he didn't have enough energy to lift his head up. He wouldn't attempt to try to sit up even with assistance. He wouldn't even bat at the toys while laying on his play gym. He would lean back on the therapist for support. He kept rubbing his face and moving his head back and forth. These were classic signs for Paxton that he was overtired. He grumbled and grunted. He sat and stared. They were getting nowhere. The therapist said that all patients have better days than others. They decided to cut him some slack today. Susanne put him in his crib and within minutes he was knocked out.

While Paxton rested up, Susanne steamed and pureed different fresh fruits and vegetables to have on hand to use for her daily feeding sessions with the little guy. So far, he had tried bananas, apples, sweet potatoes, and butternut squash. The next item she would offer him would be pears. After tasting the fresh pear puree that she had made, she was confident it would be a big hit. It was actually her favorite so far. Paxton was still not technically eating anything. He would allow her to put a small amount of food in his mouth and when he had no other choice...he would swallow it. Usually it would take a few minutes for him to clear his mouth of the food. As long as he was still receptive to taking it, she was happy. Hopefully, over time he would get the hang of it and retrain his brain to learn how to chew and swallow.

I Hear Ya'

Last night was Daylight Savings and Susanne forgot to reset her alarm clock to the appropriate time. This caused her to be in a complete state of confusion in the morning. All of the clocks showed different times. She wasn't sure which one was right and which one was wrong. Once she figured it all out, she realized that she had gotten up way earlier than she needed to. She thought to herself that it wasn't too late to catch up on a little extra sleep. Having extra time was a problem she wished she had more often.

Susanne decided to get up for good with Paxton's first feeding. She had a dentist appointment first thing this morning so she wanted to make sure she had enough time to get ready. She made sure to book the earliest one that they had because she had other appointments scheduled throughout the day. Since some were back to back, she had to prepare in advance anything that she may need while they were out. She needed to pack a couple of Paxton's feedings, his pump, enteral bag, sterile water, extension to his G-tube, his medications, diapers, wipes, syringes, cooler, toys, blankets, an extra outfit, and the emergency supplies for his G-tube. Trying to prepare for the day was a pretty big undertaking. It was more than she had hoped for on an early Monday morning.

She ended up running a little behind, but the dentist was very understanding. She was another medical professional that Susanne felt a deeper connection with than most she had encountered in the past. This dentist really seemed invested in Susanne's family. She cared a lot about how Paxton was doing and made a point to get updates. She had impressed Susanne and Scott from day one and she still continued to surprise them with her kindness years later. She even personally cleaned their teeth which was rare these days to get that much face time with a doctor.

Susanne's teeth looked great. Yay for no cavities! The appointment ended just in time for Susanne to head across town to make it to the next appointment. She had to connect Paxton up to one of his feedings on the way. Paxton would be seen by the otolaryngologist today for a follow up appontment regarding his ear tubes. The doctor wanted to make sure that the ear tubes were still in the appropriate place weeks after the procedure. Susanne was not thrilled to see a room full of sick children congregating around the admissions office. She made sure to try and stay as far away as possible from them all by standing down the hallway until her name was called. After checking in, Paxton and Susanne were instructed to sit in the waiting room down the hall. She was disgusted to find that every child she made eye contact with was picking their nose. They had no shame in their game. They were digging for gold and they were proud of it. It took everything Susanne had to not dry heave. She was afraid to sit in the chairs or touch anything around her. Her blood pressure was rising every second up until she was called back for Paxton to see the doctor. She had never felt so relieved.

Paxton's ear tubes looked great. They were just where they were supposed to be. The otolaryngologist wanted to retest his hearing since he was doing so well. The audiologist started with tympanometry first. This test was performed by inserting a probe into the ear canal to change the pressure in the ears. The purpose of the test was to measure the eardrum's response to the sound at different pressures. Paxton passed with flying colors. The next test was called Visual Reinforcement Audiometry. The audiologist provided some sort of auditory stimulus coming from the left or right side of Paxton. The goal was for him to turn his head towards the sound source. If he did this, then he would be rewarded with an interesting visual stimulus like a toy that lights up. Normally developing infants should be able to do this by six months of age. Even though Paxton was nine months old, his developmental age was around four months. Unfortunately, this meant that Paxton wasn't capable of passing this test. He would need to come back when he was developmentally older.

By the time they got home, both were exhausted. Susanne set up Paxton's next feeding and put him down for a nap. She was hoping to get caught up on a few things, but instead she fell asleep. She ended up taking an unplanned nap. It was funny to her how her body told her what to do sometimes without giving her a say.

Once Paxton had rested up, he was ready to play. After they played for awhile, Susanne needed to put Paxton to work. She attempted to feed Paxton a variety of foods. She started with bananas, followed by sweet potatoes and butternut squash. He gagged a total of two times, but he was able to recover on his own. Against all odds, he held it all down.

Susanne had discovered that Paxton really enjoyed his changing table. She always knew he loved it, but she was starting to realize just how much. Everytime she would place Paxton up there to change his diaper, he would instantly perk up. He would become very active and laugh a lot. He was very entertained with himself. He loved being changed and he loved being naked. Silly boy!

Susanne had a hair appointment scheduled for that evening. She had previously asked Aunt Leenie to babysit Paxton while she was getting pampered. Unfortunately, Leenie had recently been sick and was't feeling any better. They both decided that it was in Paxton's best interest for her not to come over. It was not worth the risk of him catching a cold. Susanne had to change her plans. She decided to take Paxton with her because it was so difficult to get an appointment with her hair dresser due to her popularity. She didn't want to wait any longer since her last hair cut had been well over four months ago. It was getting harder and harder to find time for herself. Paxton did surprisingly well. He didn't make a peep the entire time. Before Susanne's hair dresser was ready for her, one of the massage therapists asked if she could do some Quantum-Touch on Paxton. Quantum-Touch is a method of natural healing working with the flow of energy through light touch. She basically formed a "hand sandwich" on Paxton that was supposed to focus the energy on the specific areas that needed treatment. Whether or not it was a legitimate practice, Susanne would never know. The one thing she was certain of was that Paxton liked it. He was extremely relaxed and content.

Susanne knew a lot of the employees at the salon that she went to because Scott used to work there. In addition to his many degrees, he was a licensed massage therapist. He worked at this salon for years before he left for his internship. It was so nice that all of his previous co-workers got to meet Paxton. Some of them had been a great sense of support for Scott and Susanne throughout their journey thus far. They were thrilled to meet the living miracle. Paxton was nothing less than perfect.

Baby Showers of Tears

Susanne got up early this morning to prepare for the day. Moppy came over mid-morning to watch Paxton while Susanne headed over to Cory's to help decorate for the party. They had decided early on to have the gathering at her house just in case something came up with Paxton that would cause Susanne to be unavailable. It was not always predictable to know when Paxton needed to go to the hospital.

Susanne couldn't wait to see how much Julie's belly had grown since the last time they saw one another. It was amazing how even just a few days could cause her to change so much. Susanne missed seeing Julie almost everyday. They had become somewhat accustomed to spending a lot of time together over the last few years at work. Once Julie had her baby sometime in the middle of December, Susanne knew that their time would be even more limited.

Julie's mother, Cory, and Susanne spent the rest of the morning sprucing up the place and preparing some last minute food items. They had set out a few fun games for guests to participate in as the shower took place. One of the games was for the guests to cut a piece of ribbon the approximate size of Julie's belly. Even though Susanne had played this game multiple times before, she still failed miserably. Another game was to try to guess which baby picture went with which guest. This was a lot of fun getting to see what everyone looked like as an infant. Finally, they had a Scrabble board sitting out for guests to try to come up with boy's names that would result in the highest point value. People were very creative and came up with names that Julie might actually be able to use. Susanne took a picture of the final product so she could see if Julie took any of their suggestions when the big day came. There were a few other things laid out for the guests to do for Julie. There was a book that people could write any important advice for a first time mother. Also, they could come up with silly names that went along with her last name, Hart. The one with the most votes was "Achy Breaky" Hart.

All in all, it was a beautiful shower. The food was delicious and the cupcakes were a hit. Julie got her own special stash for her to take home to have all to herself. She got a lot of wonderful gifts, including a lot of the big items like the stroller and the car seat. This gave her a major sense of relief. Finally, she felt like her list had been completed. She was now officially ready to have this baby at anytime.

When Susanne got home, she was feeling odd. She wasn't sure why, when she had just come from celebrating the impending arrival of Julie's baby. This was such an exciting, life changing moment for everyone to look forward to, but for some reason Susanne felt apprehensive. When Susanne walked through the door, Moppy asked how everything went. Susanne immediately burst into tears. It caught Susanne off guard because she wasn't expecting this response. Moppy sat with her on the stairs as she relived some of the events from the past year. She remembered how excited she was during her own baby shower a year ago. She remembered the joy it brought to her to set up Paxton's nursery. She loved figuring out how to use all of the new baby gear. She remembered the eager anticipation Scott and she felt days before Paxton's arrival. All of those wonderful emotions were shattered in one second. Susanne delivered a baby that she didn't get to hold. He was taken from her immediately without her understanding why right away. Paxton was in the hospital for two months before he could come home for the first time. Susanne had to go home night after night to an empty nursery. Most of those nights, her bed was empty too because her husband was away on an internship. Her car had a car seat in it with no baby. She had a stroller without anyone to push around. It was shocking to her that these emotions were still so fresh...so raw. She was even more surprised how easily she was shaken. She was truly happy for her good friend and the beautiful experience she was about to go through, but no matter how wonderful it all was she was haunted by her own experience. She didn't wish her journey upon anyone. It was unbearable to have a child that was so sick with no cure. The best had already been done for Paxton and that may not have even been enough. Susanne feared the future. Susanne feared the unknown. She had mastered living in the moment so well to avoid thinking about any of that. In these dark moments, she had to constantly remind herself that she should rejoice in the fact that Paxton was even here at all. That was a miracle in and of itself. Also, she had to believe that he had a greater purpose for being here on this earth. He had touched so many lives already in the short time he had been living. She knew he had many more to go.

Happy Birthday Julie!

Today was Julie's birthday. She was one of Susanne's closest friends since moving to the Virginia area years ago. Julie would be taking it easy since she was eight months pregnant. Julie's mother had arrived in town a couple of days prior so she could spend the weekend with her. She had also been helping Susanne and another friend, Cory, plan Julie's Baby Shower that was scheduled for tomorrow. Her mother wanted to make herself available if they needed any extra help tying up loose ends.

Susanne needed to run a few errands today. She decided to take Paxton along for the ride instead of calling Moppy to watch him. She thought that if he went with her for the quick trip out, then maybe it would desensitize him to the whole idea of loathing the car so much. Unfortunately, this didn't work out so well. Just like so many times before, Paxton became hot and miserable within a short time. He started crying beyond repair. The best cure for this was always for her to stop what she was doing and just take him home.

Once he was home, he calmed down. She was able to cool him off and get him settled. After an episode like that, he always needed a long, hard nap to help him recover. Susanne had hopefully learned her lesson.

Susanne spent most of the evening baking Julie some of her special cupcakes that she loved so much. She decided to make chocolate cupcakes because that was Julie's favorite flavor. Susanne got creative with the toppings. She wanted to make some of the cupcakes for her birthday and she wanted the rest of them to be for the baby shower. Julie was having a baby boy so it was a no brainer to make the icing baby blue. Susanne added some edible pearls to the tops of them to give them an extra zing. The birthday cupcakes were much more festive. They had a vanilla flavored icing on top with a cherry gel swirl mixed in. To finish them off, Susanne covered them with multi-colored sprinkles, also known as jimmies. Susanne couldn't wait to see Julie tomorrow. She really hoped that Julie would enjoy the cupcakes. Until then, it was sweet dreams of confectionery clouds and jimmie rainbows.

Tweaking

Paxton had another follow up visit with his nurse today. When she saw him, she had an immediate concern regarding his fluid retention. She noticed evidence of swelling on the side of his face that he was most recently laying down on. This was called dependent edema, which was an accumulation of fluid underneath the skin that caused the appearance of swelling. Usually, the areas where the fluid gathered the most was in the places where gravity was the pulling the strongest. The other concern that the nurse had was that he had lost weight since the last time he was weighed. She was worried that his heart might be working too hard, which was causing him to burn too many calories. She encouraged Susanne to contact his pediatrician and cardiologist for advice.

She got in touch with his pediatrician first. She was able to advise Susanne on how much to increase Paxton's feedings by to increase his daily caloric intake. She wasn't comfortable with adjusting the medications without the approval from the cardiologist. Luckily, Susanne was able to get in touch with her before the end of the day. She decided to switch Paxton's diuretic dose from 7mg once daily to 4mg twice daily. It wasn't much of an increase, but hopefully it would make a difference.

Susanne knew that it was a fine line between how much fluid his body required to grow and how much his heart could handle. She was given the clinical signs to look for if Paxton wasn't responding well to the changes.

Later, Paxton had a therapy appointment. They worked on oral feedings with the variety of foods that he was already familiar with. Currently his menu consisted of a sweet potato puree, butternut squash puree, apple puree, and banana puree. Paxton started to seem less interested in the food at each session, but he still managed to get it down. He almost seemed aggravated today with the whole concept. He was still only being offered a minute amount in each spoonful. It would take him more than just a few minutes to figure out what to do with it all and swallow it down. Most of the time, Susanne would think that he was finished with the food in his mouth ready for the next bite, but then he would spit some out of his mouth. He was like a little chipmunk that would store his food in his cheek pouch until he was ready for it. Susanne was only able to get around 10 to 15 tiny spoonfuls in before his hour session was over each time. They didn't want to push him much more than that. Susanne was excited because she walked away with a new trick today. She was shown how to flip the spoon over when giving him his food so that his tongue would taste the food first instead of it sitting on his upper gums while he got the courage to move his tongue forward to try it. Hopefully this would contribute to future oral feeding success!

Standstill

Nothing too exciting happened today. It was a bunch of the same old, same old. Paxton had a therapy session today. Susanne and the therapist worked on improving his motor skills. It appeared that Paxton was sort of at a standstill for the moment. Susanne wasn't given any new skills to work on. The therapist wanted her to concentrate on some of the basic techniques that she had been shown a long time ago. The fact that he wasn't progressing at a faster pace wasn't all that surprising since he had just undergone a major operation. Susanne had been informed early on that he most likely would regress developmentally and lose weight after this last procedure.

During Paxton's naps throughout the day Susanne used that opportunity to catch up on some phone calls. This seemed to be all that she did during the week days. She was hoping it would all die down again soon.

Can You Pay My Bills...Can You Pay My Medical Bills

Paxton slept really well last night. He usually woke up between 6:00am and 9:00am for a short time before he would go back down for his mid-morning nap, but not today. Today, he slept right up until the time that he had an appointment with one of his in-home nurses. The nurse had to wake him up to get a true assessment on how he was doing. Overall, she thought Paxton was looking great.

Susanne caught up on some much needed phone calls. She came across a few bills that seemed a little fishy. One was from her OBGYN's office from February. Susanne was not sure why there was still an outstanding balance when she had just spent the last seven months proving to her insurance company that they should be responsible for the cost of any charges associated with labor and delivery because she had met her deductible. When she called to inquire about this bill, they said that it was a fee for them to fill out the one page short term disability form. Seriously....they charge for someone to fill out a one page form. They claimed it was a law. Even though Susanne was infuriated at the situation, she decided it wasn't worth the fight and she got stuck paying this ridiculous fee. Next, she called the billing department at Children's Hospital Boston for a bill she received for a service date of 07-12-10. Susanne informed the woman that she was speaking with that the first time Paxton had been to their hospital was at the end of October. This clearly had to be a mistake. She was getting charged for an ultrasound of Paxton's heart, which was never done. If she wasn't paying attention, she would have been short a lot of money. Susanne was informed that the charge was for the cardiologist at their hospital reviewing an echocardiogram that was sent to them by Paxton's cardiologist. Susanne was confused that she would get charged for something that she did not give consent for. She also was quite upset that she was paying twice for the same test. In her profession, veterinarians constantly consulted with specialists about the more challenging cases. They were never charged and they definitely didn't charge the client. Susanne was just appalled.

Paxton's therapy appointment was cancelled today. Despite this, Susanne still stuck with the scheduled plan. It was a day that they were supposed to work on oral motor skills. Susanne decided to offer Paxton a new food. Today's featured menu item would be pureed butternut squash. Surprisingly enough, he enjoyed it. Even though he significantly struggled to swallow anything by mouth, he eventually got a little of it down. Baby steps were better than no steps at all. Slow and steady would win the race.

Breaking the Law...and She Didn't Even Know It

Susanne and Paxton finally made it home after the sun had set for the night. Susanne was trying to avoid driving in the dark, but she was not successful. She had forgotten how long it took to pack the car when she was flying solo with Paxton. After three hours of getting everything ready to go, they finally got on the road.

Paxton had become less of a fan of traveling these days. He had always hated being in his carseat, but it was getting worse. It seemed like he could last about two hours before he would start wailing. Susanne would give him about five minutes to see if he would settle down. If he had not within that amount of time, then Susanne would pull over to comfort him. Everytime she had to stop, she noticed that he was drenched in sweat from the waist up. She was hoping that this would have resolved after his last heart surgery, but this was not the case. She still thought that she should invent some sort of cooling blanket to line the backside of his carseat. This seemed like an odd thing to be thinking about when it was so cold outside.

Susanne hated putting Paxton back into the very thing that made him so upset, but she was also anxious to get home. She thought that she was making good time considering how many times she had to pull over for the bug. Susanne was cruising along I-95 minding her own business. She had the cruise control set so that she wouldn't get the urge to speed. Out of nowhere, she saw a state trooper pull up right behind her. She switched lanes thinking that he needed to get around her. He immediately followed her and proceeded to ride up close on her bumper. She pulled over without knowing what she had done. The officer told her that she was speeding. Supposedly, she was going 75mph in a 65mph zone. She had not seen the change in the speed limit so she thought she was within the acceptable range. He admitted that the area he pulled her over in was right after the speed limit had changed. He said that this happened all of the time. People made this mistake often. Susanne was hoping for a warning, but she was not so lucky. She could not believe that she had gotten her first speeding ticket...IN HER LIFE...and she didn't even know she was breaking the law. It would at least have been well deserved if she was driving recklessly or going 90mph with no care in the world. She guessed rules were rules, but she didn't have to like them. It still didn't seem fair. She drove the rest of the way home with her tail tucked between her legs.

Susanne took Paxton right up to bed when they got home. He had no problems going to bed. It was so nice to see him comfortable for the first time today. Susanne was looking forward to going to bed herself, but with all of the things she had to do to get settled back in would postpone this for quite a bit. Her pillow would be waiting when she was ready.

It Feels Like We're a Family Again

Susanne was looking forward to having help with some of Paxton's feedings. She had been looking forward to this for a long time. Scott was willing to set up Paxton's 6:00am feedings during the week since he had to get up for work anyway. She had done the midnight feeding so she was hoping to catch up on some sleep.

Unfortunately, Scott didn't get up with the sound of the alarm. It was more difficult than he had originally thought. By the time he had set everything up, Paxton was behind by about an hour. Susanne was sure that he would get the hang of it in no time.

Susanne planned to take Paxton into Scott's work today to meet his co-workers. She was almost sure that Paxton would be finished with his morning nap by lunchtime, however, he was not. One of Susanne's least favorite things was waking Paxton up from a deep sleep. She waited as long as she could before disturbing him.

All of Scott's co-workers instantly fell in love with the little guy. They had heard so much about his brave journey. They couldn't believe how great he looked. The time flew by. Before Susanne knew it, Scott's lunch break was over and he had to get back to work.

Susanne decided to try to take Paxton with her to run a few errands. Even though the places she needed to go to were much closer in distance to each other than in Virginia, it was still a challenge. The close proximity didn't change the fact that Paxton hated being in his car seat. It didn't change the fact that lugging Paxton around and taking him in and out of stores was a workout. This made her trip very short.

Susanne set Paxton up for his next feeding and put him down for a nap. He ended up sleeping for about five hours. The recent travel must have really exhausted him. Susanne took this opportunity to enjoy the beautiful day. She sat outside on the porch and watched the dogs play. It was always so fun to see James run around Gigi and Poppy's big backyard. He was not used to this at all. It was fenced in so he could roam around as he pleased. Gigi and Poppy's dog, Jack, loved to try to instigate a game of tug of war with James. The funniest part was that he wouldn't use the typical toy for this competitive sport. Instead, he would find the largest stick or branch in the yard to play with. It was amazing to witness the strength of the jaw of a dog.

Susanne really enjoyed her time outside. Susanne could not remember the last time that she just sat and did nothing. It was a great time for her to try to relax and clear her mind. This was hard for her to do, but it helped when she was removed from her "home office".

Once Scott got home, they took Paxton and the two dogs on an evening walk. The weather was still warm enough to enjoy. When they returned, Susanne made dinner while Scott took care of Paxton. Before they knew it, it was time for Scott to go to bed. There never seemed to be enough time in the day.

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.