Tuesday, November 30, 2010

Supernanny

For some reason, Paxton slept until 11:00am. He must have been extra tired for some reason. Susanne was hopeful that he would have a gag free morning, but that all changed when Paxton was laid down to get his dirty diaper switched out for a new one. Luckily, he was able to hold it all down. Nothing came up other than sound.

Today, Poppy did the majority of Paxton's care. He did everything from setting up and breaking down his feedings, changing diapers, giving medications, and playing with him. A lot of the day, Poppy did everything without supervision. He had graduated to that level of care for Paxton because he was doing so well. Susanne would only intervene if he had questions. She was very proud of him for mastering everything that went along with taking care of the little guy. This was not an easy challenge to take on. It was truly a huge undertaking, but he was succeeding beautifully.

Poppy also managed to take great care of Susanne as well. It really helped her to have someone to help her with Paxton throughout the day. She was able to focus her energy on other things. Her to do list needed some trimming down. Poppy made both of them his special turkey sandwich for lunch. There wasn't much turkey left so she made sure to savor every bite.

Later in the day, Susanne worked with Paxton on sitting and head control. She was using the little piano that he loved so much to help distract him while she forced him to work. He loved hitting the piano keys and his excitement would escalate the longer he banged around. Seeing him so happy and content always put a smile on her face.

When Gigi got home, she played with Paxton on his play gym. He was really active for a while, but she could tell when he was running out of steam. He ended up taking a four hour nap because he was so exhausted from the activities of the day.

Paxton woke up for a short time at the beginning of his 9:00pm feeding. Susanne took this opportunity to work with him on accepting his pacifier. He was not feeling that whatsoever. Instead of pushing him over the edge, Susanne decided to work on something else. She tried working on motor skills like bringing his hands towards his midline. This would help to strengthen his chest muscles. Right now he still had extremely low tone for multiple reasons. The main reason was that he had two major heart operations where they had to cut into his muscles and sternum. The healing process after those surgeries was a minimum of six to eight weeks. He had also been hospitalized for much of his life where he was confined to a bed. The lack of freedom and movement didn't train his muscles to know what to do. Also, he had a severe heart condition that caused him to fatigue easily. Often, he didn't have the strength to do even the most basic, natural movements that most infants do without thinking about it. Finally, he had developmental delays that resulted in him progressing at a much slower pace than normal. Even though he was almost 11 months, he was only functioning at a four month old level. Susanne was hopeful that all of this would correct itself as he got older. She knew he would be a determined little guy. He had already proven that.

She got a lot of good laughs out of Paxton. He seemed to enjoy that time with his mommy. After about an hour, he was ready to go down for the night. Susanne was so thankful that he was so easy to read. He almost always let her know what he needed.

Monday, November 29, 2010

Extended Holiday

The day started out like most. Paxton had his morning ritual of gagging and vomiting. It happened so often now that it didn't even phase Susanne at this point.

Susanne and Poppy decided to take it easy today. They wanted to extend their holiday as much as possible. They chose to watch a movie after breakfast. Susanne had never seen any of the Harry Potter movies so Poppy thought it was the appropriate choice since he just got the DVD series for his birthday. Susanne wasn't sure if she would like it, but she was pleasantly surprised. It was creatively written and she couldn't wait to watch the next one.

Later, Susanne needed to run a couple of errands. She had been training Poppy on how to care for Paxton so she thought this would be the perfect opportunity to put his skills to the test. Even though this would be Poppy's first time to watch Paxton by himself, he gladly volunteered with no reservations. The funny thing was that Susanne wasn't even gone for more than an hour when she got a phone call. Paxton's pump that administered his feedings was running low on battery and needed to be recharged. The one problem was that Poppy couldn't find the charger. Unfortunately, Paxton's feeding could not be complete without it. Susanne got home as quickly as she could so that Paxton's schedule was not thrown off.

Paxton was really active today. He was eager to play and interact with his surroundings. He got some practice time in on his piano. He was getting quite good at producing quality tunes. He smiled a lot throughout the evening. He even smiled so much that Susanne caught him smiling in his sleep during one of his naps. It was the sweetest thing she had ever seen. When Scott got home, he walked the dogs while Susanne bathed the bug. There was nothing better than the smell of a clean baby.

Susanne was looking forward to dinner. She was going to have some of Poppy's homemade turkey soup, which was only available this time of year. He would use the leftover turkey bones to help make a tasty broth and the turkey meat that would fall off the bones would be added to the actual soup. Every year he found creative ways to use the surplus of food from Thanksgiving day. His famous turkey sandwich was always the biggest hit, but his soup was a close second. Needless to say, she knew it was going to be so delicious and soup always hit the spot.

Sunday, November 28, 2010

A Great Visit with Great Friends

Poppy decided to go all out and make french toast for breakfast. It helped for Susanne and Scott to have full stomachs before they headed out for the day.

Today they were going to visit Aixa and her parents. The added bonus was that they were going to get to meet her relatively new boyfriend for the first time. Susanne had heard a lot about him, but had yet to meet him in person. Aixa and her boyfriend, Anthony, had traveled up early in the week to celebrate Thanksgiving with her parents. Her parents lived in Raleigh, NC which was where Susanne had spent eight years of her life while she was in school. It was exciting to get to visit a place that was so near and dear to her heart. The drive from Susanne's parents house to Aixa's parents house was a little over two hours. In college, this seemed like such a long drive and at times felt unbearable. Now, after living in the DC metropolitian area for the last six years it seemed like no time at all. It was actually sometimes the norm for getting from place to place. It used to take Susanne almost two hours to get home from work if she left during rush hour even though her house was less than 15 miles away. The traffic would truly be so bad at times that she would be at a standstill on I-66 for hours. She did not miss that.

Paxton did well for the ride. It was only within the last 15 minutes of the drive that he started to get overheated and upset. He also had a bowel movement right as they were pulling up. Susanne changed him in the car before they walked up to the door. They were hoping that he had cleaned out his system so they wouldn't have to change too many more dirty diapers while they were out and about. Unfortunately, they were not this lucky. He proceeded to poop two more times during the visit, both of which leaked through the side of his diaper. The first of the two episodes got on his outfit and the second one got on Scott's jeans. Susanne was mortified to find out that she was not prepared for this kind of catastrophe. She couldn't believe that she was prepared for every other kind of disaster except for this. She had brought extra feedings, extra medicine, a cooler to keep it all cold, the charger for his food pump, extra diapers, tons of wipes, burp cloths, receiving blankets, toys, and so on. However, the one thing she forgot was extra clothes. Luckily, Aixa and her parents had bought Paxton a a t-shirt and a couple of NC State bibs. Paxton had to immediately be changed into his new "One Tough Cookie" shirt. Even though it was a size 2T, it would have to suffice.

Scott and Susanne were very excited to finally meet Aixa's boyfriend. They got to know each other throughout their visit. He seemed like a perfect fit for her. It was so heartwarming to see how happy he made her.

They all spent time catching up on time that had passed. Right before dinner, Paxton looked whipped. He ended up taking a nap on Aixa's parent's bed. Scott and Susanne secured him in so that there was no chance for him to move anywhere. Dinner was an assortment of delicious Puerto Rican food. It was so nice to have something so authentic and different from their normal diet.

Before they knew it, the sun had set and it was time to leave. Time flew by too quickly, but the trip was worthwhile. It was fun to reminisce about the past and catch up with great friends. Aixa was one of those people who, no matter how much time had passed, they picked up right where they left off. She would always play an important role in their lives and they were so thankful for that.

Paxton did not enjoy the ride home at all. He cried most of the way. Susanne sat in the back to try to calm him, but nothing really worked. He was overtired and just wanted to be held. Susanne tried to distract him enough to keep him entertained. Once home, they were all relieved. Paxton could finally go night night.

Saturday, November 27, 2010

Oyster Roast

This morning, Aunt Leah told Susanne to be ready by 9:00am because she would be stopping by to pick her up for a morning out. Leah had preplanned some fun activities for them to do together, but did a great job of keeping Susanne out of the loop. Scott was going to be watching Paxton so Susanne didn't have anything to worry about.

To Susanne's surprise, Leah first took her to get a pedicure. This was one of Susanne's guilty pleasures. There was no denying that she loved to be pampered. This was a perfect way to not only achieve that, but also bond with her big sister at the same time. They decided to get wild and pick off the wall colors for their toes. This made them smile.

Afterwards, Leah took Susanne shopping. Susanne rarely had time or the ability to get out of the house to do this. Susanne thoroughly enjoyed taking her time walking around and looking in different stores. The best part of the morning was that she also got to spend some leisurely time in the grocery store which she almost loved more than shopping. Food had always been a passion of hers so this was exciting for her. They finished up by going to lunch together. They had definitely worked up an appetite. Overall, it was a fabulous morning. Leah knew exactly what Susanne needed and intervened at such a perfect time.

Everyone wore their Team Paxton shirts today. It seemed like such an appropriate time to represent Team Paxon since it was a time of thanks. It was such a wonderful way to remember their roller coaster ride of a journey and how far they had come. The shirts looked great and the meaning behind them was incredible.

The holidays were all about traditions and Susanne's family had a lot of them. Growing up, the traditions that everyone looked forward to each year included a pinata, roasting marshmallows, and going to Sonic. As the years passed, they added an oyster roast to the list as a way to celebrate Poppy's birthday each year. It had been a few years since they had done a pinata since they weren't kids anymore. This year they finally felt like Parker was old enough to enjoy it so they added it back into the mix. It was so heartwarming to see his face light up as he was showered with a variety of candy when he finally broke it open. He thought it was the coolest thing. Parker also got to jump into a heap of leaves that Poppy had raked up the day before. Everyone took turns diving into the pile, which brought back fond memories of their own childhood. Once it turned dark out, the oyster roast began. The spread for tonight's dinner was just as exciting as yesterday's Thanksgiving meal. Poppy loved oysters so he could not wait to dig in. After an awesome dinner, it was time for dessert. They started with s'mores. Most everyone had spent years perfecting the art of roasting marshmallows, but now it had evolved into making the perfect s'more. Wally won the competition this year with switching out regular chocolate with Reese's peanut butter cups. Luckily, Susanne got to partake in the s'mores. She just had to use the Ghiradelli 72% cacao dark chocolate because it didn't have any dairy or soy in it. It was actually quite delicious and a nice change from the old school approach. Susanne found out that Parker had never made s'mores before. Susanne decided to take this opportunity to show him how to do it. He caught on quickly and boy did he love them. Afterwards, everyone went inside so Poppy could open his gifts. He loved his NC State Snuggie and Harry Potter Blu-Ray DVD gift set. He was an avid Harry Potter fan so he could not wait to hang out on the couch with his new blanket and watch movies all day. He had already seen them all numerous times, but they never got old to him. They celebrated some more with....yes more food. It was tradition that Poppy always got a cherry pie as his birthday cake. It was his favorite dessert by far. Once again, the evening ended with full bellies. Let the holiday overeating begin!

Friday, November 26, 2010

Happy Birthday Poppy!

Susanne decided to wake Scott up with Paxton laying next to him once again. Susanne wanted to make sure that he remembered that he had a lot of snuggle time to catch up on. It felt nice that they didn't have to wake up and rush to go anywhere today. They had made the wise decision NOT to participate in Black Friday. There was nothing that they needed that badly to leave the house.

Moppy, Susanne, and Scott were looking forward to Poppy's famous "day after Thanksgiving sandwich". This was a meal that was almost more exciting than the Thanksgiving meal itself. All three of them always looked forward to this special treat all year long.

Throughout the day, Susanne had been training Poppy on how to care for Paxton. He had shown interest since Susanne and Paxton first came down. She thought that it was such a nice gesture and it would definitely help her out in the long run.

The most important part of the day was that it was Poppy's birthday. It didn't look like he had aged a bit. For his birthday, it had been a tradition for them to have an Oyster Roast and Cherry Pie. Since Leah and her family were out of town, it had been postponed until tomorrow. Instead, they had pizza for dinner...that is everyone except Susanne. Paxton got to join in the festivities. He played in his bouncer that lit up and played music when he kicked around. He loved it. It was amazing how long everyone could just sit and watch Paxton. He was a constant source of entertainment.

The rest of the evening was filled with fun and games. It was always a nice way to end a day.

Thursday, November 25, 2010

Operation Grub

Thanksgiving has always been one of Susanne's favorite holidays because it revolves around family and, of course, food. She loves when everyone can get together to spend time with each other. It reminded her of where she came from and who had been with her through all of the ups and downs of life.

Scott's idea of waking Paxton up at the 6:00am feeding and switching the side that he was laying on to see if that would help decrease the gagging episodes appeared to be working. They could only suspect that this allowed him to wake up slowly and give his brain time to process what to do with all of the saliva that had accumulated in his mouth overnight. Since he had such trouble swallowing, they were looking for any way to help prevent him from drowning or aspirating on his own spit. Scott and Susanne were able to lay their head back down for a little while longer before they had to get up for the day. Susanne decided to put Paxton in the bed next to Scott when it was time to get a move on. This was Scott's favorite way to wake up.

Susanne enjoyed cooking. She loved being in the kitchen, especially with her mother. Gigi was the reason behind Susanne's passion for food. There was a long history of cooking in the kitchen together. A lot of Susanne's fondest memories were cooking along side her mom and sisters. They had always bonded over the dinner table. She hoped to share these special moments with Paxton.

Needless to say, they spent all morning cooking. It took much longer than they had expected because of a little problem. The turkey was so huge that it took up the entire oven. There was not much room at all for any of the other dishes. They ended up having to cook some of the other items one at a time in the oven with the large bird. Some of the other dishes had to wait until the turkey was completely finished to begin their cooking process. It was times like these that Susanne wished she was back at her house in Virginia where she had a double oven. This would be the perfect set up for a large Thanksgiving spread like what they were having today.

Throughout the day, different people started showing up. Moppy arrived first. She had driven the six hour drive that Susanne was all too familiar with to be able to be with everyone for the holiday. She had brought an appetizer which was a life saver for those who were already starving to death. Susanne was more excited that Moppy had made some adjustments to her famous salad so that Susanne could eat some of it. This salad was Susanne's one request from Moppy for any holiday. She was looking forward to continuing the tradition. Aunt Leah, Uncle Wally, Parker, and Cole came shortly thereafter. They brought more food including Leah's homemade bread. Since Susanne wouldn't be able to eat that, Leah was so kind to bring a different bread that was safe for Susanne's dietary restrictions. Susanne decided to try a new mashed sweet potato recipe since she wouldn't be able to eat the traditional mashed potatoes. She was getting pretty creative with her Thanksgiving meal.

As they waited and waited and waited for everything to finish cooking, they all caught up on each other's lives. It was so good to spend time with everyone. Finally at the end of the day, the meal was ready for enjoyment. Thankfully, it was well worth the wait. They were all very happy that Paxton was actually awake for the Thanksgiving dinner. It was so special that he was there. He even dressed up for the occasion. He decided that it would be super cute to dress like his daddy. They both looked adorable.

Since they ate way too much, there was no room for dessert. This was unheard of, especially in this household, but they literally were about to pop. Dessert would just have to wait for another day.

With bellies full of food and hearts full of thanks, they had a wonderful Thanksgiving.

Happy Thanksgiving

Happy Thanksgiving to all! We have a lot to be thankful for this year. Even though we have had the roughest year of our lives, we are so grateful for what we have. Paxton's entrance into the world may have been less than perfect, but he himself is perfect. He has taught Scott and I a lot about patience, love, and the beauty that can come from tragedy. We have a miracle in our lives that reminds us daily about what is truly important in this world. Without the support and encouragement from our wonderful family and friends, we would not have made it to this point. There were times that we weren't sure that we would make it through the rough patches, but we never gave up. Even though there are a lot more challenges ahead, we are beside ourselves with joy that Paxton has made it this far. He keeps us fighting, he keeps us strong. Today, we celebrate him. We love you little guy.

Wednesday, November 24, 2010

Getting Back On Track

Susanne was hoping that the third time was a charm. She had not been able to get any extra sleep the past two mornings despite Scott taking over the early morning feeding. Paxton had been having issues with gagging and vomiting. Susanne quickly realized that today was no different. While Scott was taking care of James, Susanne woke up to the sound of gagging. She immediately jumped out of bed to rescue him and hopefully prevent him from tossing his cookies. He was actually able to hold it together. Scott ended up staying up with the two of them until he had to start getting ready for work. Once Paxton settled down, Susanne set Paxton up next to her in the bed to keep a close eye on him. He ended up doing well and falling asleep for an hour.

Susanne planned to continue working with Poppy on how to care for Paxton. He had been observing Susanne over the last few days and he finally felt comfortable enough to try to do some of it himself. Susanne would definitely be checking him each step of the way until they were both confident that he had mastered the skills. Susanne believed in the motto "see one, do one, teach one". She felt like this approach really helped to commit it to memory.

While Paxton napped in the afternoon, Susanne and Poppy worked on clearing out one of the bedrooms so they could transform it into Paxton's nursery. It came together nicely. They knew Paxton would love his new digs.

At one point during the day, Paxton woke up crying. Susanne wanted Poppy to try to see if he could figure out what the problem was and try to comfort him. After a few minutes, Poppy was able to settle him down and get him to fall back asleep. His experience with four daughters had paid off for sure.

Susanne and Paxton were excited that Scott had the next four days off. They couldn't wait for him to get home to get the party started. Once Scott arrived, Paxton showed off his new room. Scott was more than impressed. Scott got to play with Paxton for a short time before Susanne worked on feeding Paxton by mouth. Scott and Gigi were both very interested in watching how to do this. They also couldn't wait to see Paxton's response. Paxton did very well with tasting apples, pears, and bananas. He took about ten spoonfuls before he vomited everywhere. Susanne truly felt that the reason this happened was that the last spoonful of bananas was thicker in consistency than the other ones. Paxton was very sensitive to this and didn't quite know how to figure out what to do with the food.

Susanne cleaned up the aftermath while Scott bathed Paxton. Paxton loved bathtime and he felt much better once he was clean. By the time he was all finished, he was ready for another feeding. Scott really got to see how time flew by when they followed Paxton's regular schedule. He loved every minute and was glad that he could finally be included in their routine.

Tuesday, November 23, 2010

Rough Morning...Rough Night

Susanne thought that she would be able to get a little more sleep this morning since Scott was able to set up and break down Paxton's feeding without him waking up. Within thirty minutes of Scott leaving for work, the chaos began. Paxton woke up as he had over the last week by gagging. He didn't always spit up or vomit, but this time there was no mistaking it. Once the vomiting started, it didn't end. It took Susanne almost an hour to settle him down. He was crying so violently that it even woke up Poppy in the next room. Susanne did her usual routine to try to comfort him. She held him and talked to him softly. She sat him up to see if gravity would help. She tried to burp him to help release any trapped air in his stomach. She checked his diaper to make sure it was clean. She rocked him and sang sweet songs in his ear. She rubbed his back and his head to help distract him. Since she heard his stomach making noises, she decided to vent him as she had done so many times before to help relieve him. She definitely had to pull out the nasal aspirator to suction out his nose and mouth. His saliva was so thick and stringy that he almost seemed to choke on it. The scariest part during these moments was that he would turn blue. This was strictly a result of his oxygen levels being too low. He would hold his breath and pull his entire upper body backwards with a lot of force. If the person holding him was not paying attention, he could easily aspirate the fluid that was in his mouth down into his lungs or injure himself by pushing himself out of their arms. It was times like these that Susanne knew that she had made the right choice to be with Paxton full time. She didn't know anyone that she would feel comfortable handling him when he was having his vomiting episodes. It was scary enough for her and she knew what to do. She was so thankful that she was there for him and she didn't let him go until he recovered. She ended up sitting on the bathroom floor with him so that she could have enough space and access to what she needed. She remembered this floor all to well because as a child she would lay on the very same floor when she was sick. Her parents would set it up nice with blankets and pillows. If she was really sick, Poppy would even hook it up with a TV. The standard menu for her when she was not feeling well was cheese toast, sprite, and popsicles. This always made her feel much better. If only Paxton could eat by mouth, he could benefit from its magical powers.

By the time Paxton recovered, it was time to feed him again. He had finally settled down enough to close his eyes for a short time. Since he usually only had episodes like these first thing in the morning, she felt comfortable enough to feed him.

After a much needed nap, Paxton looked pretty bright and alert. Susanne decided that he looked good enough to take him into Scott's work to meet the other half of the crew. Some of the ladies in his office were dying to meet the little guy. Scott ended up having a client during half of his lunch break so Susanne spent that time getting to know everyone. Paxton was a flirt as always. He was such a ladies' man.

Everyone had to eventually get back to work so Susanne and Paxton left. Susanne had to drop off some of Scott's clothes to be dry cleaned. She was pleasantly surprised to find out that there was a drive through where she could drop off the items without having to get out of the car. This was the kind of news that mothers loved to hear. It made things a lot easier when she didn't have to disturb Paxton by taking him in and out of the car especially for quick errands like dropping something off. How genius!

Scott got home at a reasonable hour. He played with Paxton while Susanne cooked dinner. Susanne loved the feeling of being a real family again. After Paxton went off to bed, they watched a movie. They were finished in time for Scott to get a sufficient amount of sleep before work. As they were getting ready for bed, Paxton woke up upset. Scott comforted Paxton and they fell asleep in each other's arms. It was such a precious sight to see.

Monday, November 22, 2010

Milkshakes...With a Twist!

Scott and Susanne had decided to split up Paxton's feedings so that Scott could get more comfortable with Paxton's routine and help Susanne out a little. During the week, Susanne would still do the majority of the care since Scott was working throughout the day.

This morning, Scott was in the process of preparing Paxton's first feeding of the day when Susanne was woken up from a deep sleep to the sweet sound of gagging. It was programmed in her head to jump right out of bed to come to his rescue. Luckily, she caught it just in time before he spit up. When Scott returned upstairs, he was confused why Susanne was up helping when the whole point of him taking the early morning shift was so that she could get some sleep. It definitely took a lot longer to get Paxton set up because he wasn't in his normal setting and Scott was still somewhat of a "beginner" at all of this. The speed would come with time. Susanne had no doubts.

Paxton ended up falling right back asleep until his next feeding at 9:00am. Susanne played with Paxton while he dined on the bed. At the end of the feeding, he was definitely showing signs that he was tired. It was typical for him to fall back asleep midmorning for another nap. For some reason, Paxton was not thrilled with his set up in a pack-n-play. He would just stare, smile, and sometimes laugh at himself. He didn't close his eyes for even a second.

At lunchtime, Poppy decided to help Susanne surprise Aunt Leah. Leah was still under the assumption that Susanne and Paxton would be coming down on Wednesday. Poppy didn't have to teach today so he took the opportunity to use that as their way to see her. He called to tell her that he was bored and would like to bring her lunch. She totally fell for it. She had already eaten lunch so instead she got a sweet treat. Poppy called Leah when they arrived at her work. She came out the front door to find Susanne and Paxton standing there with a milkshake in hand. She was speechless. She couldn't believe that Susanne had been able to surprise her so many times in such a short time frame. Leah got to have some snuggle time with the bug and even got to take Paxton around to meet all of her co-workers that had been praying so hard for him. The time went by too quickly. Before they knew it, she had to get back to work.

Susanne, Poppy, and Paxton ran a few errands. Susanne was relieved to have an extra pair of hands. It made all of the difference in the world. While Paxton was being fed through his G-tube, Poppy carried him in his arms. The biggest thing that Susanne was able to cross off of her to do list was grocery shopping for the items that she was preparing for Thanksgiving day. She knew the earlier she could get this done, the better.

Once they got home, it was well past Paxton's naptime. He had slept some in Poppy's arms as they walked around, but nothing more than about fifteen minutes. Susanne took Paxton right up to bed and started preparing for his next feeding. The time always felt like it went by much faster when they were out of the house. Susanne noticed that even though Paxton was exhausted he wouldn't fall asleep. She watched him for at least thirty minutes smiling, laughing, and kicking around. He was having a grand old time. Susanne got tickled at how amused he was at nothing. Finally, he decided to close his eyes and rest. She was hoping he would sleep for a long time because he surely needed it.

Sunday, November 21, 2010

Road Trip

Susanne was so excited for the trip today. She and the bug were going to surprise his daddy. Scott thought that they were coming down on Wednesday. She had not set an exact date in mind since Paxton was recently released from the hospital. She wanted to make sure that he was completely recovered before they traveled six hours away from his doctors and the hospital that knew him so well. Now that Paxton was close to normal, she was ready to head south. She had done something totally different this time than she had in the past. She actually tried to pack ahead of time instead of the evening before her trip. She was always so last minute and such a procrastinator with everything. She decided to try a new approach to see if she could tell the difference.

She thought that with her being so organized this time before she traveled that she would be able to leave a lot earlier to get on the road. Her goal time was 9:00am because she wanted to make it to her destination with plenty of daylight left. If there was one thing that she knew, it was that she did not like to drive at night. Unfortunately, even though she had packed as much stuff as she could in the car the day before, there was still a thousand other things she had to get done. She had to set up the cats for a few days, pack enough breast milk for the trip, prepare enough of a feeding for Paxton to last half of the trip, ransack the refrigerator and pantry for any items that she may need for the food she was making for Thanksgiving, pack his medications, shower, pump, and put together the last little odds and ends. Even though she had been up since 6:00am, she still didn't get on the road until 11:00am. What took her FIVE HOURS???? She tried not to stress about it. She tried to think positively. She thought about how much later she would have been on the road if she had not packed the other stuff in the car yesterday.

Not even thirty minutes into the drive, Paxton started to cry. He absolutely hated being in the car and even moreso his car seat. Susanne knew he would probably settle down once he exhausted himself out. Her limit for this car trip was the same as the last. If he didn't let up after five to ten minutes, then she would pull over. It still broke her heart that she couldn't do anything about his unhappiness. She tried talking to him, stroking his hair while the other hand was on the wheel, turning the radio on, singing to him, and even making silly sounds. Nothing worked. Luckily, he settled down within a reasonable amount of time. He slept for just a short time before the cycle started all over.

When she got halfway through her trip, she decided to pull off at an exit that she thought had a lot of options for food. She had only had a handful of chips, an apple, and water thus far. She was starving. Unfortunately, she must have pulled off on the wrong exit because the only places she saw were a couple of gas stations. This meant no lunch for her, but she decided to stop anyway. She needed to walk James, change Paxton, and give him a little TLC. She also had to go to the bathroom herself, but she was disgusted at the thought of putting Paxton's car seat on the floor in a gas station bathroom. She decided that she would just hold him and leave the car seat in the car. She did everything else one handed so why would this be any different? At the end of it all, it was the better choice. She was even able to wash her one free hand. This might top the chart as far as her talents went.

The pit stop went by too quickly for Paxton. She hated the thought of putting him back in the car seat because he hated it so much. If he only knew that the faster they got back on the road, the faster he would be able to get out of the car for good. She set him up with the next half of his continuous feeding for the trip and gave him the medication that was due. He slept for most of the rest of the trip. It was only when they were about forty five minutes away from the destination that he really let Susanne know what he thought about the six hour drive. If only there had been a direct flight from Virginia to North Carolina, it would have made things a lot easier.

Susanne eventually made it in one piece. She could not believe that with as many times as she had traveled this way, that it was not second nature by now. She was so thankful for her GPS. It may not take her the fastest, most direct way, but it would get her to where she needed to go even if she made a wrong turn.

Susanne called Poppy thirty minutes before she got to the house. He was an important piece to the surprise. Scott and Poppy walked Jack, Susanne's parents' dog, together everynight. He left for the walk so that Susanne would have enough time to get there and in the driveway before they returned. Susanne called Poppy once she was in position so he would know it was safe to turn around. He didn't pick up the phone, but the vibration from the call was the secret code. Once Scott got to the top of the driveway, he noticed Susanne and Paxton waiting anxiously for his arrival. He was beyond shocked. He couldn't believe that they had come three days earlier than they were supposed to. After the shock wore off, he was able to express how happy he was to have his family back together again. It just felt right.

The night ended with a movie. Scott and Susanne were out of practice with their old routine so they decided to dive right in and end the night with snuggling on the couch in front of the TV together.

Friday, November 19, 2010

One Man Show

Susanne's morning began with a serenade of gagging, followed by vomiting. The vomiting went on for upwards of an hour. Susanne could hear Paxton's stomach making some crazy noises during this time, so she decided to burp him. When this wasn't sufficient, she decided to vent him to relieve him of any gas that had built up in his stomach that could not escape. The gas was mainly from him breathing with his mouth open. As a result, he swallowed a lot of air on a daily basis causing his stomach to become bloated at times. When it became bloated, it caused a lot of discomfort and pain. The magic combination of him not feeling well and having so much air trapped in his stomach caused him to vomit. At the end of this long episode, he had a bowel movement. This plus the combination of treatments seemed to provide some relief. She was always amazed at how she could juggle so many things at once. She was an impressive one man show. After all was said and done, she was left with a large heap of dirty laundry.

This episode was scarier than most. It not only felt like it was never going to end, but Paxton turned really pale. Susanne remembered from the most recent hospital stay that when Paxton got upset, his oxygen levels would drop pretty significantly. His color didn't return back to normal for quite awhile. Even by the time of his therapy session, the therapist commented on his pale appearance. He still seemed lethargic to the two of them. Susanne had decided that if he did not perk up by the end of his appointment, she was going to take him into the pediatrician's office for an evaluation. It was times like these that she wished for a pulse oximeter to be able to measure his oxygen levels. They decided to work on motor skills instead of oral feedings due to the kind of morning he was having. He did relatively well for having such a rough start to his day. He was successful with assisted sitting and lifting his head during tummy time. He still pushed through even though he didn't have to.

Later in the evening, Cory stopped by for a visit. She brought dinner for Susanne, which was always appreciated. Susanne was so excited that Cory was actually starting to show. Her baby bump was coming out and it was super cute. After the delicious meal, Cory helped Susanne give Paxton a bath and get ready for bed. She even read him a few stories before he was ready to close his eyes. The rest of the night was spent catching up with one another. Susanne sure missed spending time with her. They were going to have to do this more often.

Susanne decided to try to get a head start on packing for her upcoming road trip to NC instead of relaxing. She was hoping her hardwork would pay off.

Thursday, November 18, 2010

Head and Shoulders

Paxton slept well overnight. It was easy to tell that he was completely exhausted from his last few days in the hospital. He loved that no one was waking him up every three to four hours to take his vital signs and blood pressure. Susanne loved this as well. They were both so thrilled to be back in their own beds. There was nothing like the comfort of our own mattress, our own sheets, and especially our own pillow. It was a little slice of heaven.

Paxton played for a short time on his play gym before he was ready for his morning nap. It was a quick one because he had a therapy session scheduled before noon. Today the therapist focused on working his neck, shoulders, and arms. She agreed with Susanne that he seemed tight in this region and even appeared uncomfortable. He had been crying whenever Susanne would extend his left arm over his head. He usually loved this especially when she would show him that he was SOOOOO BIG. Unfortunately, he didn't care too much for this recently. The therapist felt lots of resistance with any kind of manipulation of the shoulders. She worked on shoulder depression, shoulder extension, shoulder retraction, and general range of motion. She felt that he also had tight muscles at the base of his neck. She taught Susanne how to do different massage techniques to loosen them up. It was amazing the improvement that had occurred by the end of the appointment. He was much more relaxed and the mobility of his arms was so much better. The therapist thought that some of this discomfort could actually be from a strained chest muscle. The location of this discomfort could just be referred pain. Since he did not have much strength in his head and neck, it affected the rest of his body negatively. Hopefully with the new techniques, he would continue to improve and feel better.

Paxton slept most of the afternoon. When he was awake, he would only play for a limited amount of time. This was his typical routine after any kind of stress inducing experience. It was times like these that Susanne made sure to follow Paxton's cues and let him dictate what he needed. Since he napped so much today, Susanne was able to catch up on multiple things that had to be put on the back burner while Paxton was in the hospital. She felt very productive.

Susanne put Paxton down for the night. It was shortly thereafter that she heard a scratch at his door. She quickly realized that Figaro had accidentally gotten shut in the nursery. He was a master of flying under the radar. He often got himself into trouble because he was so sneaky. Susanne finished up what she was working on and then went to rescue the feline in distress. When she opened the door, she could not find him. She first thought that maybe she was hearing things and he wasn't really in the room. Just as she was about to leave, she noticed a furry kitten sleeping on the changing table pad. At least he made the most of being locked away.

Sunday, November 14, 2010

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.

Friday, November 12, 2010

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.

Wednesday, November 10, 2010

*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.

Monday, November 8, 2010

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.

Sunday, November 7, 2010

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.

Saturday, November 6, 2010

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.

Friday, November 5, 2010

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!

Thursday, November 4, 2010

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.

Wednesday, November 3, 2010

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.

Tuesday, November 2, 2010

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.

Monday, November 1, 2010

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.