"No" Day

Susanne and Paxton spent all day traveling back to North Carolina yesterday. It was so nice to finally be back in Scott's arms.

Today, was Scott's first day of unemployment. They made the executive decision to have a "no" day and take time to just pout. Having a "no" day meant that they were not allowed to do anything that would require them to think. If the opportunity presented itself to do something like that, they were to just say "no"!

In between taking care of Paxton, they slept. They wanted to rest their minds as much as possible.

The First Time

The First Time
by The Script

She's all laid up in bed with a broken heart
While I'm drinking Jack all alone in my local bar and we don't know how
How we got into this mad situation, only doing things out of frustration
Trying to make it work, but, man, these times are hard

She needs me now but I can't seem to find the time
I got a new job now on the unemployment line and we don't know how
How we got into this mess, is it God's test?
Someone help us 'cause we're doing our best
Trying to make things work, but, man, these times are hard

But we're gonna start by drinking old cheap bottles of wine
Sit talking up all night, saying things we haven't for a while, a while, yeah
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

She's in line at the door with her head held high
While I just lost my job but didn't lose my pride, and we both know how
How we're going to make it work when it hurts,
when you pick yourself up you get kicked to the dirt
Tryin' to make it work, but, man, these times are hard

But we're gonna start by drinking old cheap bottles of wine
Sit talking up all night, doing things we haven't for a while, a while, yeah
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

Drinking old cheap bottles of wine
Sit talking up all night, saying things we haven't for a while,
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

For the first time
Oh, for the first time
Yeah, for the first time
We just now got the feeling that we're meeting for the first time

Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby
Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby

Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby
Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby

Panic Attack...Stay Back!

Susanne had a bit of a rough night after the news she had received from Scott. Once she got off of the phone with him, she started to feel odd. Her heart started racing and, at times, she would have heart palpitations. Occasionally, she would feel some tightening in her chest with associated discomfort. Her throat became tight and it seemed like it was closing up on her. She was restless, even shaking some, and she felt sick to her stomach. This scared her. She pulled out her stethoscope to listen to her own heartbeat. She was concerned when she heard an abnormal rhythm. She wasn't sure if she was having a heart attack or something else. She immediately called Scott to tell him her concerns and see what he thought. He knew right away what was going on. He informed her that she was having a panic attack. Without a second thought, he contacted Dr. Aunt Leenie, who was a licensed psychologist, to head over to the house and assess the situation. If needed, she was prepared to take Susanne to the hospital. Scott called Susanne back and had her stay on the phone until Aunt Leenie and Uncle Loonie arrived. Once there, they insisted taking over all of Paxton's care. They made sure that Susanne had nothing to worry about, but herself. Aunt Leenie forced Susanne to drink a tall glass of water, focus on breathing, and choose an activity that was relaxing for her. Of course, she picked laying in her bed snuggled up with both kitties watching trash TV. If anything would help her take her mind off of their current situation, this would do the trick.

Over the next few hours, Aunt Leenie checked in on Susanne periodically. Susanne later found out that she had fallen into a deep sleep within an hour after she had gone upstairs. Even when Aunt Leenie and Uncle Loonie decided to leave for the night, Susanne didn't wake up to Aunt Leenie's voice or touch. She called Scott to give him an update before heading out. He was relieved that Susanne was resting deeply.

Susanne woke up the next morning a little confused. Once she came out of her sleepy haze, she was quickly reminded of the previous night's events. She was pleased to find Paxton still sound asleep in his crib. He looked so peaceful.

Susanne had already made plans a while ago to get out of the house today. She had requested to have Moppy stop by later that afternoon to watch the bug so she could run some errands. She was going to try for the third time to make it to the mall to use the gift cards that she had received for Christmas. The timing of this outing was perfect. She couldn't have planned it better herself. She thought that maybe it was God's way of trying to assist her in forgetting her crappy life for another day. Retail therapy was always helpful.

Thankfully, her attempt to go shopping was a success. She didn't get interrupted, there were no emergencies, none of the stores closed on her, but most importantly, she found lots of good stuff. Mission accomplished.

That evening, Susanne's friend, Thorny, stopped by to visit the little guy before they both headed out for a going away party for someone they had worked with for a long time. The restaurant they were going to was really close to Susanne's house, which was always a plus. It helped to ease Susanne's mind about being able to respond quickly if an emergency came up. Thorny was shocked at how big Paxton had gotten since the last time she saw him. She was tickled pink that he was smiling so much too! She was smitten by his charming ways. Moppy eventually had to kick them out of the house. If she hadn't persuaded them to leave, they would have stayed with Paxton all night.

Thorny and Susanne had a great time out. It was always so awesome for Susanne to be able to catch up with all of her close friends. Susanne tried to block out the events that had occurred within the last 24 hours. It was truly too much to think about with everything she already had on her plate. She found that with the assistance of some alcohol, it was a lot easier to accomplish this.

At the end of the night, Thorny and Susanne took a cab back to Susanne's house. They were pleased to find out that Paxton had a great time with Moppy. She did have some trouble getting him to sleep, but this was almost routine for them. Paxton never wanted to sleep when his Moppy was over. He always had too much fun hanging out with her to want to close his eyes.

Let Go

Paxton had a therapy session scheduled for today. He was going to be working on oral motor skills for the first time since surgery. They decided against offering him any pureed foods to avoid overwhelming him.

Susanne started slowly by working on some intense facial massaging. He didn't appear to be too resistant to the exercises. He even proved that he could still bring his tongue forward when prompted. Susanne showed the therapist how he was interested in the oral swabs that she got from the hospital. She reminded the therapist that Paxton had responded well to them in the past and he responded well to them after this last surgery. Paxton allowed Susanne to place the oral swab into his mouth horizontally. He would open his mouth up to receive the oral swab and place his lips around it. His tongue would move forward to explore the texture of it. He eventually started to suckle around it when he realized that doing so caused it to express small amounts of water. He seemed startled at first, but gradually became accustomed to it. The water appeared to sooth his throat especially since it was so dry from breathing through his mouth and not swallowing much. They decided not to push him too hard today. They wanted to end on a good note so they stopped while they were ahead. Next session, however, they would bring it.

Susanne and Paxton had a pretty low key day. Paxton was still having days where he wanted and needed longer naps. Susanne took this opportunity to try to get adjusted back to real life. She had piles of bills and numerous messages she still needed to sort through.

Susanne was caught off guard by a phone call she received from Scott later that night. He informed her that he was let go from his job at the end of the day. Just when the two of them were beginning to think that things couldn't get worse in their lives, they were proven wrong.

You Got Questions...I Don't Got the Answers

Paxton had a therapy session late in the morning. This was Paxton's first appointment since having his cleft palate repaired. Susanne requested that they work on motor skills today to give Paxton another 24 hours before working on anything dealing with his mouth. She wanted to give him as much time as possible to increase their chances for success. Paxton did well throughout the session. There wasn't much change regarding his skill level, but that was to be expected at this point. Susanne was given goals to work on over the next week before the therapist left.

After a quick nap, Paxton had to be woken up for his next appointment. He had a follow up visit with the pediatrician as well as his next scheduled Synagis vaccine. The appointment went very well. Dr. Lynn was more than impressed with Paxton's weight gain over the last few weeks. He was finally back on track with his own personal bell curve.

Susanne came prepared today with a list of questions for the doctor. First, she had the pediatrician calculate out his current daily caloric intake. For once, it was exactly where she wanted it to be and it didn't need adjusting. The continuous feeding overnight had allowed for this to occur. Susanne was able to add in what would equal an additional feeding without causing fluid overload to his system. It seemed like his body had a sufficient amount of time to digest the additional calories since it was given over such a slow rate. Since he was on strictly formula overnight, there wasn't the same concern about it being out of the refrigerator for the full eight hours like there was with the breastmilk. Overall, this was a better set up for everyone involved. Paxton was gaining weight, the pediatrician was meeting his nutritional requirements, and Susanne was getting a little extra sleep.

Next, Susanne asked about the two new upper pre-molars (or possibly molars) that had erupted right after Paxton's cleft palate repair. Susanne had pictures of the roof of his mouth prior to the surgery and they were not present at that point. She was curious if any of the instruments used during the operation could have forced the teeth to poke through the gums sooner than they would have otherwise. It appeared that the teeth were coming in at an abnormal location. They were visible right on the inside of the upper gumline. The pediatrician confirmed that they were in an odd place, but she couldn't definitively give the reason why. She thought that it may have to do with him having Pierre Robin, but she couldn't be certain. It was just something that Susanne would have to watch for now. There was nothing that anyone could do at this point. It was a known fact that Paxton would eventually be seen by an orthodontist as part of the craniofacial team he was required to be followed by once he turned 18 months. They would just have to wait it out to see if this would cause any long term problems.

Also, Susanne inquired about the shape of Paxton's head. Instead of his forehead being nicely rounded, it had more of a scalloped appearance. There was a slight indention in the middle of his forehead that seemed odd to Susanne. The pediatrician thought that it could just be a result of the bony plates that make up his skull not yet coming together completely. He still had an abnormally large "soft spot" that supported this theory. She wasn't sure if the shape of his forehead would change once the fontanelle closed, but it was something she also wanted to watch for sure.

Susanne's most important question was about Paxton's never-ending diaper rash. She wanted to know what else it could be since it wasn't clearing up. Susanne was worried about food intolerance or a food allergy. The pediatrician wasn't convinced. Since it improved somewhat in the hospital while Paxton was on antibiotics, the pediatrician thought that it was more likely to be bacterial in nature. They knew it was less likely to be yeast because Susanne had already treated him with a long course of antifungal cream. Before the pediatrician started switching a lot of things in Paxton's world like using different diapers, changing his food, or putting him on antibiotics, she wanted Susanne to let Paxton sit without a diaper on as often as possible for a week or so to dry him out. If this resolved the issue, then they would not have to go to any further extreme. If not, then they would start changing things up. Susanne knew that this would result in long days of endless laundry, but Paxton was well worth it.

All in all, Paxton looked great. Dr. Lynn couldn't be any happier with his progress. She couldn't wait to see him in a month once he was completely healed from surgery. She had high hopes for this kid. She didn't expect any less.

Cinderella Hard at Work

Today was a messy day. Paxton had multiple episodes of projectile vomiting on and off all day. Everytime she thought he was finished, he would start up again. Susanne had managed to do four loads of laundry and change Paxton's outfit four times all before lunch. He sure kept her busy!

By early afternoon, Susanne elected to give Paxton a bath. His neck had managed to cling onto the awful smell of the recycled formula. It was the gift that kept on giving. It was pretty humorous by the end of it all, but gross nonetheless.

The most difficult part about the morning was that Paxton sounded congested, especially after everything had come back up a few times. His breathing was noisy and at times sounded like he was snorting. Since he had just had his cleft palate repaired, Susanne was not allowed to suction him with the bulb syringe unless it was life or death. She tried other approaches to try to clear his nasal passages and the back of his throat. These methods were definitely safter, but not as effective.

Susanne's good friend, Cory, stopped by later in the day for a visit. She had to work the day of Paxton's birthday party so she wanted to make sure to find a different time to come over to help celebrate. Her timing ended up being perfect. Paxton was awake when she arrived. He smiled a lot and was extremely interactive. Cory was impressed with the positive changes that had occurred since the last time she saw him.

Paxton opened his gift from Cory, which included a fun toy that had lots of bright colors and high contrast patterns. It was the perfect choice to provide visual and auditory stimulation. He also received a book called, "Oh, the Pets You Can Get!". Paxton sat in his high chair playing with his new toy while they ate their dinner. He was very interested in all that it had to offer. It was an instant hit. Susanne and Cory sat and enjoyed watching him.

Shortly after dinner, Paxton was ready for bed. Cory got to observe their usual nightly routine. Once Paxton was out cold, the ladies had the opportunity to catch up. It wasn't until hours later that they realized how quickly time had passed them by. Susanne was excited that Cory was feeling so well, heading into her third and final trimester of pregnancy. It was so funny that just the sight of her made Susanne want to do it all over again.

Wake Up Sleepy Head

Paxton slept from the time they arrived home yesterday around 1:00pm until 7:00am this morning. Susanne kept going into his room to check on him to make sure he was okay. He would stir occassionally crying and moaning, but he would never open his eyes. Usually it was because he was due for his next dose of pain medication or because he had a wet diaper.

Susanne was curious to see if Paxton's gagging episodes would resolve after his cleft palate repair. She thought that she would be able to determine this best once he was back at home on his normal schedule. Unfortunately, his first morning back began with some difficulty. He spent time trying to figure out what to do with all of his saliva, followed by gagging, and finished off with vomiting a few times. It was comparable to how every other morning started out before the surgery, except that now nothing came out of his nose. Hopefully, his ability to swallow would take a dramatic upswing over the next few months. Susanne knew it would still be an uphill battle, but she was ready for the hike.

Once Paxton recovered from this episode, he was ready to fall back to sleep. Susanne was shocked that he wanted to close his eyes again after he had just been sleeping for 18 hours. Susanne knew he was tired, but not this tired. She followed his cues and tucked him back in. He was out within minutes. It wasn't until 9:00am that he was ready to play. He woke up bright-eyed and bushy-tailed. He looked refreshed and renewed. Susanne was happy to see him acting like his old self again. He was smiling and laughing. He was clapping and kicking. He even managed to coo a little bit.

Susanne played with Paxton on his play gym. This was the first time they had done this for almost two weeks and it felt good. Susanne wasn't sure if she was dreaming, but she was almost positive that Paxton seemed stronger. He was grabbing and holding his toys better than she had ever seen him do in the past. He was so deliberate with his actions. Susanne was so proud of the little guy. It hadn't even been a complete hour before he was rubbing his eyes and yawning again. She had never had surgery, but she imagind that it must take a lot out of a person. Back to bed he went.

Susanne was prepared to slowly work Paxton into his regular schedule. She didn't want to push him too hard too quickly. She was going to take it one day at a time just like she had been doing every day since he was born. That had proven to be the best approach.

Skin of Your Teeth

Susanne and Moppy didn't get to bed until around 1:30am. They were hoping to be able to sleep at least until 4:30am, but that didn't happen. Paxton woke up just shy of 3:30am. Like clockwork, he would wake up right before his next dose of pain medication was due. He had been doing this everyday since he had his surgery. Susanne knew that the discomfort would lessen over the next few days, but she hated the thought of her baby being in pain at all.

Paxton had become accustomed to his mommy coming to his rescue anytime he cried. She had never let him just "cry it out". She knew if there were tears, then something was truly wrong. He was such a mild mannered, happy-go-lucky baby. Crying was not his go-to emotion. He only ever did it if there was an actual reason. Also, she was hypersensitive about him getting upset because his oxygen saturation level would drop drastically if he did. She knew from past episodes that his oxygen levels could drop into the low sixties. Unfortunately, this still occurred even after his two heart procedures. This was dangerous and it wasn't worth the risk!

Moppy and Susanne had checked out the night before. This was necessary because they had to be at the airport around 6:30am in order to have enough time to check their luggage and get through security. They left later than they would have liked, but still felt that they would make it on time. It didn't help that it had started to snow AGAIN. It seemed like the snow followed Paxton wherever he went. He had experienced more snowstorms in his one year of life than Susanne had her entire life before he was born.

When they finally arrived at the airport, it was packed. The line for checking bags was endless. They stood in line for well over an hour before they got to the front. They knew they were pushing it to make it to the gate on time. Thankfully, it wasn't their first rodeo. They made sure to be extra prepared when they got to the security check. Once they were through the first portion of the security process, Susanne encouraged Moppy to go ahead so she could try to have them hold the plane for them. After every possible liquid was checked, Susanne ran to try and make it. She was more than relieved to find out that the plane was running behind. This gave her a chance to catch her breath and recuperate. She also had time to pull up and administer Paxton's medications. He was also due for his next feeding, but Susanne made the executive decision to skip it to maintain her sanity.

When they were finally called to load the plan, they were shocked that they didn't provide time for parents that had children. This was standard for any airline, but they must have forgotten to call it. This meant that Susanne, Moppy, and Paxton had to fight against the crowd. It was not an easy feat.

Paxton slept most of the flight. He only got upset at the end of it. He was restless and ready to be home already. As they were landing, Paxton thought that it was the appropriate time to have an explosion in his pants. The word explosion was actually an understatement. It had become somewhat of a tradition for Paxton to do this. Susanne couldn't remember any flight where Paxton hadn't left his mark. She had to invariably change his outfit upon arrival to their destination. It constantly shocked her how he continued to one-up himself with the degree of disaster that he'd create. What a messy boy!

They caught a taxi back to Susanne's house, which ended up being about a thirty minute ride. After geting all of their luggage into the house, Susanne immediately put Paxton down for a nap. He had been going strong since early in the morning and she knew he was exhausted. She sure was too! She knew that it would take forever before she could sit down because there was so much to unpack. It was in that moment that she decided to leave it for later and take a nap herself. This was the best decision she could have made. Any sleep was a bonus for her. She would take it any way it came.

Insomnia

Paxton didn't sleep well at all today. He woke up early in the morning crying and uncomfortable. He was due for his next dose of Tylenol and Oxycodone so Susanne originally thought that this was the problem. She would hold him until he would settle down and close his eyes. The second she would try to lay him back down, he would start crying again. She decided to sit with him while he fell back asleep. She held him for at least an hour and a half. By the time he opened his eyes again, it was time to set him up with his next feeding.

All day, he fought going to bed. He just couldn't get comfortable. He had a very sensitive stomach and ended up vomiting at least five times within the course of the day. It was a new experience for both Susanne and Paxton. They were used to the vomit coming out of both his nose and mouth. Now, the vomit just came straight out of his mouth and she meant literally straight out of his mouth. The amount of force that was behind it, seemed unnatural. It was projectile and there was a lot of it. It almost seemed fake. It reminded Susanne of the pie eating contest scene from "Stand By Me" when Lardass initiated the start of the Barf-o-rama. Yucko! Luckily, Paxton didn't seem to too bothered by the disturbing episodes as much as he used to be. Susanne could only guess that it was because he didn't have the burning sensation from the vomit going up into his nose. There always seemed to be a positive side to every situation...no matter how bad.

Susanne and Moppy were hoping to lounge around all day. They thought that they would have plenty of time to relax, but that was not the case with Paxton being out of sorts like he was. They were kept busy with the multiple loads of laundry that needed to be done. Susanne honestly spent most of her day holding Paxton. Not that she minded holding her sweet boy, but she was concerned that he was so uncomfortable and wasn't getting any sleep. She tried everything from burping him, elevating his pack-n-play more, switching the side he was laying on, and trying to tire him out by playing with him for longer periods of time. Nothing worked! She couldn't even finish getting ready for the day because he required her total and complete attention. There was one point during the day when he was so restless in his bed that she had to go over to check up on him to make sure he was okay. She said in a low voice, "What are you doing?". He immediately turned to her and laughed. He continued to laugh anytime she said anything to him. He was being so silly, but just not able to get settled.

The other time-consuming part of the day was the endless amount of diaper changes that occurred. Paxton probably held a world record today for the highest number of dirty pampers. He had so many that the wipes almost ran out. By the end of the night, they were having to be rationed out.

During the down times, Moppy and Susanne tried to prepare for tomorrow's departure back to Virginia. It was always difficult to pack too early because they usually needed most of the stuff right up until the minute they were walking out of the door. Hopefully, they would get it together. Having an 8:30am flight would sure make this more difficult. Good Luck Ladies!

Hello! Goodbye! Hello! Goodbye!

Paxton definitely did not sleep through the entire night. The poor guy was up multiple times due to pain. He would start to become restless about an hour before his next dose of pain medication was due. Each time he made even the slightest peep, Susanne was up within seconds to settle him down. Scott, however, slept right through the commotion. He had a gift for sleeping through the loudest of noises. He had not quite figured out how to fine tune his "mom ears". Luckily for Paxton and Susanne, Moppy had experienced "mom ears". She woke up with Paxton's every move as well. This was helpful to Susanne because while she was holding Paxton to comfort him, Moppy could pull up the next dose of medication or retrieve anything else he may need like a receiving blanket, water to flush his tube, or a clean diaper. Susanne had managed for over a year to be able to multi-task and do all of this by herself. Now, she was realizing how awesome it was to have an extra pair of hands.

Once they were up and at em', Moppy spent the rest of the day working on stuff for her job. She worked downstairs in the kitchen so that Scott, Susanne, and Paxton could have some alone time. She felt that it was important for them to have a chance to be a family again. Susanne and Paxton were very sad about Scott leaving today. Even though had a great time together, the thought of him going was always looming over their heads.

Paxton had more energy today than he had over the last few days and he was actually interested in playing for a bit. He was interactive and even laughed for the first time since the surgery. It was the sweetest sound they had heard in a long time. Children were always so amazing. Even through the pain and the suffering, they always managed to muster up a smile or a laugh. This was by far what all parents of ill children depended on to be reassured that things were going to be okay. It was the only thing that provided comfort to them and gave them the strength to continue the fight.

After a full morning of play, Paxton eventually fell asleep on Scott's leg like he had become accustomed to lately. He fit perfectly in the space it created just like a missing puzzle piece. This was Scott's secret weapon if Paxton was ever upset. It was an instant pacifier for him for some reason.

After spending all day together, it was time for Scott to leave. It caused all of the old emotions they were so familiar with to resurface. They hated leaving each other. It was painful to always have to say goodbye just as they were getting used to each other again. They were familiar with the roller coaster ride of emotions, but they were ready for it to end. The empty feeling that arose in the pit of their stomachs was not a pleasant one, but they had to put their game faces on just like always.

It was a sad goodbye. Once Scott was gone, Moppy tried her best to distract Susanne. No matter what she tried, she could still sense her desolation. The only thing that could possibly do the trick was food. If this didn't cheer her up, then there was no hope left. They had been looking forward to ordering specialty hotdogs since the day they arrived in Boston. This was a must have for this evening. Unfortunately, the restaurant that served them was closed. This was the second failed attempt to get these tasty treats. It appeared that it was just not meant to be. Maybe the third time would be the charm.

Instead, they ordered food from Bertucci's again. They were pleased with the spaghetti and meatballs that they had ordered on the last trip up so they thought it would be a good choice. They learned from their previous mistake and decided to split one order of pasta this time. The portions they offered for one person could literally feed an army.

On their way back up to the room, they had to take the elevator because Paxton was in his stroller. They loved any opportunity to go up and down the elevator because of the response they would get from Paxton. He would laugh everytime the elevator would beep to indicate they had moved up a floor. It didn't even matter if he was tired or painful, he still managed to squeak out a little laugh. Priceless!

While they waited for their food to be delivered, they bathed Paxton. He had spit up a few times. He even had an episode of projectile vomiting, which made the cut for longest distance in the Guiness Book of World Records. Susanne thought that a warm bath would not only clean him up, but it had to be soothing. Hopefully, this would help him sleep better.

Paxton was ready for bed right away. He went down with no difficulties. Susanne and Moppy joined forces for his 9:00pm feeding. Now that he was on more medications, it took extra time to get everything set up. Susanne was shocked to see the cocktail of drugs that Paxton was on. He required seven different medications, six of which were due again at that feeding. She was worried that his stomach would already be too full by the time they were finished giving them and there would be no room for food. Poor guy!

After Susanne and Moppy finished taking care of Paxton and finished their dinner, they were both full, tired, and warm. This was the perfect combination to fall asleep. Susanne just had to fight the urge until she was able to set Paxton up with his continuous feeding for the night. She would need to try everything to stay awake for just a little bit longer.

Moebius Schmoebius

The first thing that Scott and Susanne learned when they got to the hospital this morning was that Paxton was being discharged today. YAY! Both the cardiology team and the craniofacial team thought that Paxton looked fantastic. The doctors had transitioned him over to all of his normal medications this morning and he was tolerating his feedings well.

Paxton had already had a busy morning. The suture that was attached to his tongue was removed and they repeated the bloodwork from yesterday to make sure everything still looked good. Their main interest was the electrolytes, which could be abnormal from the high doses of intravenous diuretic that he had been given. Susanne and Scott hated the thought of him having to get his blood taken again because it was such an ordeal. It was difficult to get a sample due to the awful state of his veins from overuse. Even though it pained them to think about it, they knew the importance of the information and that always outweighed everything. This was in Paxton's best interest even though he didn't view it that way. Luckily, all of his values were within normal limits.

Paxton was ready for a nap shortly after Susanne and Scott had arrived. This seemed to be his pattern this week. While Paxton was sleeping, the nurse spent time preparing Paxton's discharge instructions and gathering the appropriate items he needed to go home. Susanne and Scott had been given some things to do as well before he could go. They had to go to the pharmacy to fill his prescription for pain medication. This was definitely at the top of their list because they didn't want him to be in any discomfort. They also inquired about getting a copy of Paxton's most recent heart ultrasound. Lastly, they went to grab some lunch to bring back to the room because even though Paxton had been cleared to go home, it always took the medical team a few hours to get everything ready for him to leave.

As they were waiting, someone approached them about doing another research study. This time the study was attempting to find a genetic link to congenial heart defects. There were two groups performing similar research that wanted to have access to Paxton's information. The requirements were simple...they just needed blood from all three of them. Since Paxton had already been poked earlier that morning, they decided against getting another sample from him. Instead, they took multiple swabs of Paxton's mouth to evaluate his DNA that way. Susanne and Scott were escorted to a different part of the hospital to get their blood taken. Susanne had no problem doing this anymore. She had to get over this fear during pregnancy when she had to get it taken so many times. Scott, on the other hand, still hated the thought of it. It was the process of the blood actually being drained or pulled from his body that grossed him out. Even though he was apprehensive, he decided that he would do anything for his baby boy.

Later that day, Susanne checked her e-mail account. She was beside herself with what she found. She received a message from the neuro-ophthalmologist who Paxton saw in January. She had been investigating whether or not Paxton could still be considered a candidate for Moebius syndrome. Susanne and Scott were pleased to read this e-mail:

"Hi Mrs. Padilla,

I did hear back from Dr. Engle, one of the nation's experts on Moebius syndrome. She reviewed Paxton's pictures (including the ones that you had sent to me in email), my findings, neurology findings, and MRI findings.

Dr. Engle agreed with the conclusion that Paxton does not have the features of Moebius syndrome and would not pursue any further work up towards this diagnosis. For this reason, she would not recommend a more detailed MRI to be done to look for MRI related changes that can be seen in Moebius syndrome. Thanks for your patience. I hope that this is helpful to you.

Sincerely,

Gena Heidary, M.D., Ph.D."

Moebius syndrome had been one of the potential clinical diagnoses that Paxton received from the genetics team at Cincinnati Children's Hospital Medical Center back in May of 2010. They mentioned that if Paxton didn't end up having this syndrome, then he would likely be displaying features of a syndrome that had not yet been discovered. In turn, they would just have to name it Paxton's syndrome for the time being. So it looked like Paxton had "Paxton's Syndrome". Paxton really knew how to get himself noticed.

Just before they were about to walk out of the hospital, Paxton had an episode of respiratory distress. His tongue seemed to continually get stuck on the roof of his mouth, which made it challenging for him to breathe. It almost sounded like he couldn't get enough air when he would breathe in. His breathing was very noisy. He was crying and sweating. He turned blue and couldn't catch his breath. Susanne got nervous and paged the nurse. After the nurse evaluated Paxton, she contacted the doctor on call to assess the situation. The doctor felt that he looked okay. She was certain that these episodes would lessen over the next few days as Paxton adjusted to the new structure of his mouth. Even though it was scary to watch, Paxton recovered well on his own.

Finally, it was time for Paxton to be discharged. They were instructed that Paxton would need to be seen within four to six weeks for follow up from his cleft palate repair. If all looked well, then Paxton would need to come back again at 18 months to be seen in the craniofacial clinic. Paxton would be followed by this team for the rest of his life. Depending on his age and his progress, this would change how often he was seen and by whom after the initial appointment. The cardiology department wanted to see Paxton back in eight to ten weeks. This would put him six months out from his last major reconstructive heart surgery. Paxton would be sedated at that time to get a second MRI of his heart. This would give the doctors more specific information on the state of Paxton's condition. While he was under sedation, they would also perform another echocardiogram. Hopefully, his heart will have had time to grow more. Susanne and Scott thought that it would be ideal to just combine the appointments. It looked like they would be heading back up to Boston at the end of April.

After they got appropriate instruction for Paxton's post-op care, they broke free. It was nice to have Paxton back under their care. They knew he would be exhausted from his stay in the hospital. They were hoping that he would just sleep right through the night.

Once Paxton was settled in, Susanne and Scott went out to have one last date night before Scott had to leave to go home tomorrow. They decided to be a little more low key this evening and go to the food court that was on the way to the hospital. They had a lot of different food options and it was much cheaper. It was so nice that Scott was able to be there from start to finish this time. Usually, he was only able to be present for Paxton's actual surgery day and a few days afterwards. This time, he was able to be there before Paxton was admitted, for the surgical procedure, the hospitalization, and discharge. This was not only great for Paxton, but Susanne as well.

Nothing Will Stand In My Way

When Scott and Susanne arrived at the hospital this morning, Paxton was awake staring at his "Happy Valentine's Day" balloon. Paxton was enamored with its movement and shine.

Compared to yesterday, Paxton looked so much better. He seemed more comfortable and the generalized swelling had markedly improved. He actually looked like himself again. This gave Susanne and Scott a great sense of relief. Susanne's persistence for a cardiology consult and intravenous diuretics yesterday sure paid off.

Within moments of them being at the hospital, Paxton fell back asleep. It seemed like he had almost waited for them to arrive before closing his eyes. He wanted to make sure that they knew he was okay. Scott and Susanne watched Paxton sleep for hours. They couldn't believe that he was out for so long. It was important that he rest as much as possible especially since he had be up on and off over the last two nights battling pain from his recent procedure. It was nice to know that he was almost out of the 72 hour window of maximum discomfort.

When the nurse came by to give them an update, she informed them that Paxton had developed stridorous breathing overnight. It became so much of a concern that they had to intervene. The doctors were worried that his airway was becoming almost completely obstructed from all of the swelling that had occurred secondary to the surgery. They had to give him Dexamethasone, which is a steroid that aids in decreasing inflammation. They also had to provide him with supplemental oxygen so that his oxygen saturation levels would remain stable for him. Lastly, they tried positioning his head at a certain angle to optimize his ability to breathe. Since their medical intervention, Paxton seemed much more relaxed. The nurse did mention that Paxton had started his morning with an episode of gagging and ended up vomiting twice. Susanne wasn't shocked by this at all because this had been his morning ritual for as long as she could remember. Also, he had a huge bowel movement that migrated up his back and soiled his bed. The nurse had to give him a mini-bath. This was also not surprising because this was a definite Paxton trademark. Why else would he have been given the nickname "Poo Panny"?

The craniofacial team stopped by after lunch and informed them that they thought Paxton was looking good overall. The doctors wanted to postpone removing the suture that was connected to his tongue because of the concerning respiratory episode that occurred within the last twelve hours. They wanted to make sure to have a way to pull his tongue out of the way if he got into a critical situation. Also, they wanted to give the medication sufficient time to take effect.

Later in the day, Scott and Susanne got to hold the little guy. They took turns rocking him and comforting him. He was yawning quite a bit and even sneezed a few times, which appeared to be uncomfortable for him. Even through the pain, he managed to give them a smile for the first time since the surgery. This warmed their hearts and made everything all better.

Paxton was finally officially transferred over to the cardiology service, which is where he should have been the entire time. It was so important that Paxton's primary care be supervised by them instead of the craniofacial team because they didn't know the intricacy of Paxton's cardiac condition and how to manage it. They could only evaluate his progress as far as the cleft palate repair went. They wouldn't be able to adjust any of his cardiac medications or change the overall plan without talking to the cardiologist first anyway. It just made more sense this way.

Dr. Marx, Paxton's primary cardiologist at Children's Hospital Boston, stopped by again today to check in on him. He also wanted to make sure to talk with Susanne personally since he had missed her the day before. He spent a good bit of time going back over the most recent findings from Paxton's sedated heart ultrasound. He was more than impressed. He was actually surprised at the differences he was able to see with the sedated echocardiogram vs. the unsedated echocardiogram. Before, he didn't think that Paxton's right vetricle was growing or functioning at all. He had mentioned that Paxton would probably need his next heart surgery within the next year. Paxton would get the heart procedure that would be one step away from needing a complete heart transplant. This was scary news. Now, he thought that the right ventricle was growing. He witnessed it working well enough to pump some blood up through the pulmonary artery out to the lungs. This was confirmed with Paxton's oxygen saturation levels. His oxygen levels had been running above 85. This alone supported the idea that more than just the Glenn shunt was supplying blood to the lungs. This was fabulous news, especially to come from the horse's mouth. He mentioned that the goal for Paxton at this point was to switch back over to getting all of his medications through his G-tube instead of through his intravenous catheter. If he remained stable on that for over 24 hours and continued to tolerate his feedings well, then he could be discharged from the hospital. They were hoping that this would occur before Scott had to leave on Saturday.

Susanne and Scott thought that this great news was worth celebrating. They decided to have a do-over second attempt at Valentine's Day. They walked a few blocks to a different Mexican restaurant. They decided to switch up their cocktails this time. Instead of their usual margaritas, Susanne got a Corona and Scott got the house Sangria. They decided to be adventurous and try the cactus appetizer. It was better than they had anticipated, but it did have a weird aftertaste. Their meals were delicious. They had a wonderful time rejoicing in Paxton's overcoming another obstacle in his life. They were constantly inspired by his will to live and his refusal to stop fighting no matter what it took. His perseverance was remarkable.

Pain, Pain Go Away...

Susanne, Scott, and Moppy tried to get as much sleep as possible last night. They wanted to try to rest up for a long day at the hospital. All of them had been so anxious and worried about the surgery yesterday that they had not rested easily the few nights before.

Paxton looked agitated today when they arrived. He was kicking and thrashing around out of frustration. He had no understanding of what was going on, he just knew he didn't like it at all.

Paxton had done so well overnight, that he was approved to be transferred to the step-down unit on the same floor. The doctor that evaluated him this morning thought that he was right on track. Susanne and Scott thought that although that may be true, he surely looked swollen. Some of the swelling was expected after any surgery, but it just seemed to be excessive. The previously loose identity band on his leg was now cutting off his circulation. His face kept getting puffier and puffier by the hour like a tick. His soft spot on the top of his head was as firm as a rock. Susanne knew these symptoms all too well. This was exactly what put Paxton in the emergency room in November. He had to be experiencing fluid overload.

Susanne inquired about his medications. She was primarily interested in when he would be started back on his diuretic. It was in this moment that she realized that they had made a mistake and had him down to receive his Lasix only twice daily. He was supposed to have it every eight hours instead of every 12 hours. In his world, this was a big deal. Susanne reminded the nurse of his accurate medication regimen. Also, she requested to speak with a cardiologist to discuss his current status. After their assessment, they decided to switch him to intravenous Lasix instead of giving it through his G-tube. The good news was that Paxton's lungs sounded clear and his heart sounded good. Sometimes when the heart was overloaded with fluid, it could exacerbate the murmur. The nurse gave Paxton a dose of the diuretic immediately. They all were relieved that they didn't wait to start the medication until that evening like they had previously planned. Susanne and Scott were hoping that once the medications had time to take effect, it would alleviate the pressure that had built up in his head. This would hopefully help decrease the pain associated with that.

Scott was able to hold the little guy in attempt to help to settle him down. He still couldn't seem to get comfortable. Susanne held him a little while later and had the same issue. Luckily, she found a position that he thought was comfortable. He ended up sleeping in her arms for a couple of hours. She couldn't take her eyes off of him. This was the best feeling in the world.

Scott got Paxton transferred back into his bed when they were ready to go get some lunch. He changed his diaper and snuggled him in. This was the most comfortable Paxton had looked all day. He slept so soundly for hours. His daddy did such a great job.

The second they returned from getting their lunch. One of the doctors from the craniofacial team stopped by to give them an update. If they had decided to actually eat their lunch in the cafeteria, they would have missed her for sure. It was funny how it never failed that the moment Susanne started pumping or they left the room for anything, someone of importance would show up. Overall, the doctors thought that Paxton looked stable. She educated them on the timeline for his full recovery. Susanne was given specific details about what therapy skills were acceptable and not acceptable to work on with Paxton over the next six weeks. She would not be able to work with the pacifiers at all, but she could still offer him pureed foods on a rubber tipped spoon as long as he didn't chew on the spoon itself. The facial massage would still be acceptable, but she would have to minimize the exercises she did inside his mouth. The doctor was hopeful that the suture attached to his tongue would come out tomorrow. Once his generalized swelling was controlled, they would start talking about sending him home. This was music to their ears.

When Paxton woke up, he seemed uncomfortable again. His nurse had done a great job of keeping up with his pain medications, but he still seemed restless. Susanne and Scott requested some oral swabs to see if wetting his mouth a little bit would help. Paxton was unsure about it at first, but then accepted it willingly. He felt much better after all of the bloody build up was removed. It was easy to tell that it soothed the back of his mouth. The short drips of water he was able to get out by mouthing the oral swab helped to lubricate his throat. They were so proud of him for pushing through the pain.

Paxton had much better mobility of his mouth afterwards. He was actually able to put his lips together and occasionally opened his mouth up to yawn. They were able to get a good look at the surgery site. There was definitely not an opening to his nasal passages anymore. It looked well sutured. He still had the stay suture intact for the doctor or nurse to be able to pull his tongue forward if it retracted too far backwards. They had not had to use it yet, despite his tongue being far back in his mouth. As a result of this, he sounded like Darth Vadar. He had difficulty breathing at times, but he would eventually self-correct the problem every time.

While Susanne was pumping, Paxton's primary cardiologist stopped by to discuss the results of the sedated echo from yesterday. She could have called that one. They had to repeat the echocardiogram from January because they had difficulty assessing the right ventricle and pulmonary artery with him awake. Now, they had a much better idea of what was going on. Scott and Moppy were ecstatic to hear that the right ventricle had mildly improved in size and function. There was actually also some blood that was being pumped up through the pulmonary artery to the lungs. This was a remarkable finding. Hopefully with time, this would continue to improve. There was some regurgitation of his tricuspid valve, but that was to be expected. This was more positive than they had expected. This was a nice change for them.

The rest of the evening was spent taking turns holding Paxton, sitting with him while he was entertained by Baby Einstein DVDs, and watching over him as he slept. Once they got him settled in for the night, they left to head back to the house. Tomorrow seemed promising for continued improvement. They were so pleased that he was starting to become more alert. They wanted their old Paxton back ASAP.

Hooray for Surgery Day...NOT!

Susanne called the surgery department the night before to get the official time of Paxton's surgery. He was scheduled to go under the knife around 11:00am. He was required to arrive an hour and a half before the procedure for Susanne and Scott to complete the necessary paperwork. It was a nice change not to have to get up super early to be at the hospital by 5:00am for his surgery like they had in the past. They weren't sure if it was the type of surgery or his age that changed when it was scheduled, but it really didn't matter to them. The extra sleep would be welcomed either way.

After filling out the initial paperwork, they had to meet with a nurse to double check Paxton's history, discuss his feeding schedule and medication schedule over the last 24 hours, and document his vital signs. Along with that, Paxton always got an ECG, blood pressure, and oxygen saturation level as part of his basic status check. The nurse originally had some difficulties with getting his oxygen level to reach 100%. It was only after Susanne and Scott mentioned that his level was currently in the high eighties or low nineties that she felt relief. After they finished everything they needed to do, Paxton got clearance for surgery that day.

Unfortunately, they had to hurry up and wait. After the initial assessment, they were sent back to the waiting room. They were informed that the surgeon was running behind by about an hour. It was suggested that they grab a bite to eat since it would be a long day. They were given a "lob-stah" pager so they would know when to return to the front desk in the admitting office.

They barely finished their lunch when they were summoned. The pager went off three times and Susanne got called once. There wasn't much time given for them to get upstairs. Once there, they were immediately taken up to the surgery prep area. This was where Moppy had to split ways. She was escorted to the waiting area while Susanne and Scott got to stay with Paxton right up until the minute he was taken into the OR. It appeared that Paxton was in good spirits. He was laughing and smiling quite a bit for what was about to happen. The fact that Paxton wasn't aware of what was going on and he wouldn't remember any part of the entire process was what kept their heads held high. The nurse switched him into his Johnnie before he was taken back. Susanne and Scott kissed Paxton goodbye. Susanne got teary eyed for the first time this morning as the nurse walked away with him in her arms. Letting him go was the hardest part of the whole process.

Waiting, waiting, and more waiting. They set up shop in the same area that they were in for Paxton's last surgery. Just like last time, they continued to be faked out by the nurses and doctors that would walk by. They thought that anyone that even looked their way had to be coming to give them an update. This was extremely nerve-racking. It was about four hours later before they were told he was waking up from anesthesia. This entire process took much longer than they had expected. They were transferred to the cardiac ICU waiting room while he finished waking up and got settled into his hospital bed. After an hour of more waiting, Susanne couldn't take it any longer. She had to see her little monkey. She was so anxious and nervous and restless....she couldn't stand it anymore. She thought she would explode if she didn't see Paxton in the flesh pronto. She just wanted to know for sure he was alright. She wanted to talk to him, touch him, kiss him, hold his hand, smell him, and comfort him. She wasn't asking much.

Finally, they allowed Scott and Susanne to go back. Paxton looked rough, but was at least sleeping when they walked into his room. He was doped up on some good drugs, which helped. They hadn't even been there for more than five minutes before he had a meltdown. He was dysphoric and unhappy. The nurse had swaddled him nicely in a big blanket, but this was a recipe for disaster for Paxton. He got overheated very quickly. Susanne unwrapped him while Scott fanned him. Susanne talked to him softly and tried to calm him down. It was difficult for her because she wasn't allowed to hold him. She had to comfort him from afar. His oxygen levels were dropping rapidly. The nurse had Susanne hold an oxygen mask close to his face. Paxton eventually recovered and fell back asleep. Scott snuggled him in and Susanne rubbed his head so he would know she was there.

While he was in la la land, they decorated his bed with all of his lucky charms. The most important one was his "Lucky Bear", which had been with Paxton since the very beginning. He also had some new faces. Jill had given Paxton a monkey for his birthday. Before they left for Boston, Paxton requested that he be able to take it with him on the trip. It was a perfect fit because he always got a stuffed monkey anytime he was admitted into the hospital. Susanne and Moppy also got him one. They had been eyeballing the Curious George Doctor from the gift shop since January. They couldn't pass it up and got it for him for today's surgery. It was amazing the following he attracted. He had a lot of support wherever he went. This had to aid in the recovery process...right?

Love Is In the Air

Today was Valentine's Day. Unfortunately, this morning was no different from any other morning. Paxton was up on and off between 7:30am to 9:00am with his usual gagging fit. Most recently, he would wake up crying, but not open his eyes. It seemed like he was still be in a light state of sleep. Susanne found that if she could actually wake him up and get him to open his eyes, then he recovered faster.

To celebrate the special day, Scott and Susanne went to get massages. Since it was a last minute decision, the spa didn't have a slot for them to get a couple's massage. Instead, they had one back to back. It wasn't ideal, but it would get the job done. Susanne went first because she was the lady. Scott took this opportunity to take a cat nap. As Susanne suspected, the massage therapist commented on her "mom shoulders". He said she had a bad case of it. If he only knew...Susanne had to carry around at least 18lbs of cuteness everyday. Scott went next. He had been wanting a massage for months now. He had chronic back pain, which was alleviated somewhat after deep tissue therapy.

Susanne tried to take a cat nap like Scott had done, but her cell phone wouldn't leave her alone. She received a call from Paxton's medical supply company. They called every month to double check which items needed to be included in their shipment. Even though the majority of the time nothing would change, she appreciated them being so involved. The problem that she was having was that the last few shipments either contained the wrong items or they were missing some items all together. She had not changed the order since September when Paxton had his G-tube placed so she was confused who was switcing it up on her. She would go through the list of medical supplies every month and would double check the order, but somewhere there was some sort of miscommunication. She was getting frustrated with the gentleman that she was speaking with. First, she had difficulty understanding him. Second, he wasn't listening to a word she was saying. He just kept repeating himself instead of addressing her concerns. During their conversation, someone beeped in. She answered the call and it was another person from the medical supply company calling to double check which items she needed for the next shipment. This sent her through the roof. It just seemed like they were so disorganized. They sure messed up a lot for a company that was relied upon to deliver the appropriate critical medical supplies to patients. After she hung up with the second guy, she requested to speak with a manager. It took multiple failed attempts to get anywhere before she hung up on the guy. She knew that someone would have to call her back. When a manager finally called her back, she was informed that her account would be marked from now on to never receive a call from INDIA again. Seriously! It was pretty scary that the people who were making the majority of these phone calls had no idea what products they were talking about.

After the massages were finished, they walked around downtown Brookline. It was fun for them to take a nice leisurely stroll together hand in hand. They stopped by a local deli and split a sandwich as an afternoon snack. This was one of Susanne's favorite types of food. True delis were hard to come by where they lived. She always seized the chance to grab a bite to eat at one if the opportunity presented itself.

Paxton was up when they returned from their morning out. It was nice for them to get a chance to hang out with the little monkey before they headed back out for their special evening together. Paxton loved all of the attention and laughed a lot. Scott and Susanne sat with Moppy while she ate dinner. They didn't want to isolate her completely on Valentine's Day.

Shortly thereafter, Susanne and Scott hopped on the T and headed to a popular Mexican Restaurant in the area. Susanne's experience on the subway this time was much more positive. It literally took them less than fifteen minutes from start to finish to get to their destination. They started off their romantic dinner with some homemade guacomole and margaritas. Susanne chose a yummy mango margarita while Scott chose their house margarita. Both were quite delicious. As the evening progressed, the conversation got deeper and more serious than they had hoped. Their stresses and concerns about the upcoming surgery got a hold of them. It spiraled into a discussion about their currrent situation, which was less than ideal. Even though they saw each other more often, they still weren't together as much as they thought they would have been at this point. The distance was killing them. They both lost their appetite rather quickly. They just wanted to get back and be with Paxton before the big day.

On their way back, they ended up accidentally getting off at the wrong stop. It was very similar to what happened to Moppy and Susanne a couple of days prior. Luckily, with the assistance of Scott's phone, they got back to the house safe and sound.

Scott and Susanne wanted to regroup before heading upstairs. They slipped into a dark room on the main floor. They sat in silence and just held each other tightly. It was their only way to escape the real world for a short moment. They didn't want to let go of their embrace. They didn't want to move at all. They just wanted time to standstill. They wanted to remain in the still of the night forever.

Daddy Arrives In Boston

Paxton woke up before his continuous feeding was finished. He was gagging and seemed uncomfortable. It appeared that he was dealing with thicker secretions again. Susanne felt that he was a little stuffed up as well. Susanne had to suction him multiple times and rock him back and forth. After about an hour, she finally got him to fall back asleep.

Susannne laid back down until his next feeding. Interrupted sleep was not ideal, but it had become her lifestyle for so long that she didn't know any different.

Moppy had agreed to watch Paxton so that Susanne could surprise Scott at the airport. She got ready and was out the door with plenty of time to get there. She didn't want to risk showing up too late because timing was everything. Scott texted Susanne when he landed to let her know that he got there safely. This gave Susanne appropriate heads up for her perfect execution. She was hiding behind the carousel when she spotted him in the distance. Her excitement took over. She couldn't wait to see the expression on his face when he realized that she was there. He went around one side of the carousel and she went around the other. She had managed to stay out of his line of vision. He sat down to wait for his suitcase to circle around the conveyor belt. She walked up unnoticed and sat down beside him. He casually looked up and did a double take. He knew she looked familiar. It finally registered that it was Susanne. He was so thrilled to see her. Susanne took Scott to the restaurant in the airport that she had eaten at almost everytime she arrived in Boston. They had a wonderful lunch together and spent the time talking. It was nice for them to be able to forget the world for a moment and focus on each other.

Scott was so eager to see Paxton that as soon as they were finished eating they headed over to the Yawkey House. He was sleeping when they arrived. He looked so sweet and angelic. Not too long after they had been there, he started to stir. Susanne and Scott were curious to see what Paxton would do when he saw his daddy's face. He was just waking up when his eyes locked onto Scott's. It was a priceless moment to watch him light up at his daddy's presence. Scott got to play with Paxton for a while. Paxton loved his daddy time.

Tonight they went down to participate in the monthly trivia night to try to keep their mind off of the upcoming surgery. It was a nice way for them to meet the other families that were staying at the house. The gentleman that led the group reminded them of the remarkable generosity that existed in this world. He spent well over an hour making sure that everyone went home with something. He made sure to find out where people were from and gear his questions towards things that they could relate to. For example, the couple from Iceland could participate because he asked them specific things about the region they were from. It was a perfect way to break up the redundancy of their schedule. The most touching part of the evening was watching one of the children that had a terminal illness choose prizes for her three siblings and her father that could not be there with her. She even chose a prize for a little newborn baby that was a spectator. Susanne decided to use her own last win to have the young girl make sure to pick out something for herself. She was very excited to pick out a new pair of flip flops. She hoped she could feel the effects of paying it forward.

After trivia, they all moved into the kitchen to enjoy a home cooked meal made by one of the employee's mothers. She had prepared barbecued chicken, broccoli, homemade maccaroni and cheese, and homemade chocolate cake. Susanne was weak and took a spoonful of the maccaroni and cheese. It looked too good to pass up. Once their bellies were full, they called it a night. They all retired to their room and most would probably finish the night out by watching the grammies.

Susanne went back downstairs to make more formula. She walked into one of the families discussing their situation with another family. Susanne was sad to hear that they had a child that had already had five operations and was currently waiting for a heart to become available for a transplant. The child was only three years old and had been in the hospital for two months. He had been on the transplant list for over four months now. She was praying that it would all work out for them, but she knew that it meant that someone else would have to lose a child. This mother brought out a scrapbook that was in the main room of the house. It featured pictures of all of the children that had stayed at the house. She encouraged Susanne to make one for Paxton. As she was flipping through the album, she came across pictures of Sam Oliver. This was the child that had passed away when they were in Boston the last time for Paxton's major heart surgery. Susanne was brought to tears the moment she saw his precious face. It was another trigger for her that she wasn't aware of until that moment. It just made her so deeply sad for Sam's family. She couldn't bear thinking about the fact that they had lost a child. He would have turned a year old at the end of this month. She knew that it would be a difficult time for the family and she was only hoping that they knew they were loved. She made sure to say a prayer for Sam and his family. She was reminded of the reality of the unfortunate circumstances that each family was facing that was staying in this house.

"The T", Stinky, and Me

Paxton's feeding went off around 7:30am. After Susanne had disconnected him, she was hoping to fall back asleep until around 9:00am when he was due for his next feeding. Paxton had other plans. He had managed to poop everywhere. Susanne changed him on the bed so she could air him out a little bit. Even though she thought she had him well covered, he managed to, once again, pull one over on her. He peed everywhere. It seemed inevitable that they would have to do laundry everyday.

Moppy and Susanne were glad that they had picked up a few items from CVS yesterday. It helped to have some food on hand to eat for breakfast without having to leave their room. They had so many other things that they needed to focus on...like cleaning up after the messy monster named Paxton.

While Susanne got ready for the day, Moppy played with Paxton. She worked on range of motion of all of his extremities. She focused on trying to get him to sit with minimal support to try to help strengthen his core. He tracked his toys from left to right and up and down. He even practiced grasping those same toys and holding on to them with all his might. Lastly, Moppy made sure to work on making him smile and laugh. She achieved both by pushing his tickle button. He fell for it everytime.

Susanne and Moppy felt bold today. They decided to get out of the house and explore a little bit of Boston. They had a few errands to run so they thought the best way to get it all done was to go to the closest mall. This way it would minimize them running around like crazy. They noticed that there was a stop to the local subway system close to where they were staying. They felt comfortable with this mode of transportation because of their vast experience with the D.C. Metro. It ended up taking much longer than they had anticipated. It wasn't as straight forward as they would have hoped. It also didn't make things any easier that they had a stroller to push around. Boston's subway system, "The T", was much smaller than the Metro. There wasn't nearly as much room on the actual individual cars as they were used to. The limited space, plus the fact that it was the weekend, complicated things.

They finally arrived at their final destination. They chose to eat first since they had skipped lunch. By the time they got to the closest restaurant, it was mid afternoon. Once they were settled in a booth, Susanne hooked Paxton up to his feeding. They enjoyed an elaborate meal while recovering from their recent adventure to get there. Paxton had time to recover too and took a short nap. It was nice to have some time to relax and not feel cooped up.

After they were done dining, they walked around the mall. They accomplished everything on their list. Paxton decided to spruce things up a bit when they were in the last store. He had a "SBD", silent but deadly, diaper. He usually had no shame in his game and announced his dirty diapers by introducing them with lots of sound. This one was different. This one was silent and unexpected. The smell that came from Paxton was shocking. It almost didn't seem possible that it had come from something so cute and tiny. Susanne and Moppy knew that if they were having difficulty being around Paxton, then everyone else must be struggling even more. Susanne actually dry heaved once early on until her nose became slightly desensitized to the putrid odor. They couldn't wait to get out of there. One so they could get some fresher air and two so other shoppers would quit looking at them funny as if they were the cause of the smell. This was the closest that Paxton had ever come to clearing out a room.

On their way home, they thought they had "The T" figured out. The trip back to the house should have been very straightforward. Unfortunately, they didn't realize that there were multiple lines that had stops all along the road they needed to get to. They got off at the wrong stop. They were much farther away from the house than they had planned. They had to walk multiple more blocks to get back. The positive side to this was that now they would pass the CVS so Susanne stopped for a sweet treat. Also, the extra walking helped to burn off some of the calories they had ingested at dinner.

They got back to the room around 8:00pm. They were not thrilled that it had taken them so long to do what they had done. Instead of dwelling on it, they pushed forward. They had a lot to do. It was pretty much the usual, like doing laundry, making more formula, pumping, pulling up medications, preparing Paxton's feeding, giving medications, setting up his feeding, and so forth and so on. They did not get done until around 10:30pm. Right as Susanne sat down, Paxton's enteral pump beeped. His feeding was completed. All she could do was laugh because this was a typical scenario she found herself in far too often.

She struggled to keep her eyes open after she actually got to sit down. It took all that she had in her to stay awake long enough to pump one more time before bed.

Breath of Fresh Air

Last night was the first night that Susanne got to try out her new dual bottle warmer and bottle cooler. It was specifically designed to make nighttime feedings easier. She knew it would be more convenient, but she didn't know that it would change her life. Gigi was introduced to this phenomenal invention at the last baby shower she attended. She decided to get it for Susanne for this trip to Boston to hopefully make her life easier. She knew that everytime that Paxton needed a feeding, Susanne had to go from the third floor to the first floor to get the enteral bag and formula from the refrigerator. In order to heat the formula up, she would have to either run it under warm water or place it in a cup of warm water and wait until it reached the appropriate temperature. If Paxton was due for any medications, then Susanne would have to go down to the basement to retrieve the medication bag, pull up the medications, and bring the bag back down to the appropriate refrigerator. During the day, this wasn't such a big deal, but late at night was a different story. Now she could keep Paxton's enteral bag and evening feedings cold until it was time for them. When she needed to warm them, she just had to add water to the warmer and it would steam the bottle within seconds. It was brillant!

Susanne had to get up at 6:00am because she knew it would take her close to two hours to get everything ready and packed for the trip over to the hospital for Paxton's day of pre-op workup. She had to keep in mind that it was also a fifteen minute walk from the Yawkey House to Children's Hospital Boston. Susanne pumped first and then was going to hit the shower next. Unfortunately, both showers on their floor were occupied. She had to wait for over ten minutes before one became available. When she returned, she went to put on her makeup and remembered that she had run out of foundation the day before. Susanne didn't fear because she knew that Moppy had stopped by the mall yesterday to pick her up a new supply. When she asked Moppy for it, Moppy couldn't find it. She looked high and low for the foundation, but it was nowhere to be found. Now Susanne had to move into emergency mode. There was no way she could go an entire day without makeup...that was just a sin. They would ABSOLUTELY have to stop by CVS on their way to the hospital to find a substitute.

They were about five minutes late, which was mainly due to the difficulties they had with navigating the stroller through the ice and snow on their way to the hospital. Susanne had to first register Paxton for outpatient services in the admitting office. Luckily, this was the only appointment she had to go to without makeup on. Even though it was difficult, she survived. While they waited to be called back for their first appointment, Susanne had a chance to get dolled up. She felt much better after that.

At their next appointment, they were required to review Paxton's history in its entirety. This was no small feat. Susanne had to recall all of the details by memory because she didn't bring any of Paxton's medical histroy with her this time. It took her brain a few minutes to warm up, but then she was back on track.

Next, the nurse assessed Paxton. He weighed in at 18lb 1oz with his height being 29 inches. His oxygen saturation levels averaged around 92, but it went up as high as 96. He usually averaged in the high eighties, so this was impressive. His ECG looked comparable to what it had been in the past. Everything else checked out well, so he got clearance for the next phase of the pre-op workup.

While Moppy and Susanne waited to meet with the anesthesiologist, Susanne colored a picture for Paxton for Valentine's Day. It was a page of small hearts. She decided to go with a color scheme of reds except for the center heart, which she colored bright yellow. This was symbolized Paxton. It not only stood for his unique heart, but him as a whole. He stood out like a bright, shining star in a sea of others. His warmth emanating from deep within in him. Susanne was so proud of her sweet, baby boy. She was so blessed to have him as her special Valentine.

They met with the anesthesiologist and discussed in detail the plan for Paxton's surgery day. Susanne was able to ask questions and remind them of Paxton's medical issues. She made sure to request that they watch him extra closely after he was extubated because he couldn't swallow. Paxton didn't have a normal oral phase to his swallowing. He could only swallow as a reflexive response. There were definite times where he would panic and almost seem like he was drowning in his own saliva. This was by far Susanne's biggest concern this go-round. She wasn't sure how Paxton would respond to having his cleft palate closed, and still have to deal with the secretions in the back of his mouth with no escape route. She was sure that he would have even more saliva and some blood to handle after surgery because the surgery site was in his mouth. She was praying that his recovery from anesthesia would be uneventful. The doctor appreciated the reminders about Paxton's unique situation because not all children that had Pierre Robin Sequence had difficulty swallowing and definitely very few had additional heart disease.

After they were finished with the anesthesiologist, Moppy and Susanne were sent back out to the waiting room. This time it felt like they waited a lifetime for the next appointment. They were verbally informed of the plan for the actual procedure. They were given specific instructions about when to discontinue his normal feedings, when to discontinue his medications, when to feed him Pedialyte, and where to show up. Susanne was familiar with this whole process so it wasn't anything new.

Around 3:00pm, they were finished with all of the appointments. Moppy and Susanne finally got to eat some lunch. Susanne set Paxton up with his next feeding and he ended up falling asleep in his stoller. He had such a long day and was tuckered out. Even though he was all covered up, everyone seemed so interested in him. Some people even requested to see what was underneath the shade so they could sneak a peek. Everyone's response was always the same. They were all caught off guard by his cuteness. He was becoming a lady's man and he didn't even have to try.

Paxton didn't stay asleep long in his stroller because he could never get comfortable in that thing. Once he was back to the room, however, he fell asleep right away and napped the rest of the afternoon.

Moppy and Susanne decided to order in so they wouldn't have to take Paxton back out in the cold weather. The one place that they chose, wasn't delivering that night. This hardly ever happened, per the person that answered the phone, but it was just their luck. When they thought there was no hope for dinner that night, someone made a delivery of turkey wraps as a donation to the house. It couldn't have come at a more perfect time.

During dinner, Susanne and Moppy met a family that had been there for a couple of months. The daughter was suffering with something known as a neurogenic bladder and bowel. Usually, it was something seen in patients with spina bifida, but she didn't suffer from that condition. The doctors really couldn't find a reason for her to have the problems she had. The problem wasn't discovered until she was six years old. She was now eleven and had undergone numerous procedures to help her try to manage her bladder and bowel dysfunction. Unfortunately, the doctors had to resort to placing a colostomy bag and urine bag. She also had a G-tube, much like Paxton's, in order to be able to receive enough nutrition on a daily basis to maintain her weight. She had an amazing presence about her. She was very outgoing and precocious. She had an extremely positive outlook on life even though she had every reason not to. It was like a breath of fresh air that came at a perfect time in Susanne's life. God had such a funny way of working at times and Susanne was thankful for that.

My Funny Valentine!

Boston Bound...Again

It was warm and cozy when Susanne woke up. It was a nice change from the night before. She was so comfortable that she didn't want to get out of bed, especially since the cats were so snuggly. The morning came too quickly, but there was nothing she could do about it. There was no time for her to mess around. She had a lot of packing to do before she flew out this afternoon.

Luckily, the continuous feeding overnight helped her out some because she didn't have to get up at 6:00am. It gave her a little extra time to sleep even though his feeding finished around 7:30am. Paxton was sleeping heavily when she went in to disconnect his feed. He was out cold and didn't budge one bit. At least one of them was getting some rest.

Susanne tried to finish packing, but it was challenging. She found that it was hard to consolidate all of the items that were necessary for the trip. For some reason, she kept getting interrupted. In particular, the telephone would not stop ringing. Susanne had thought about not answering any of the calls, but she knew they were all important in their own right. One of the phone calls was from the pharmacy where Moppy was trying to pick up Paxton's prescriptions. Susanne had been going to the same place over the last year for all of his medications. For some reason, on the day they were flying out to Boston there was a problem. They were having issues with the insurance that they had on file. Susanne made sure that they had the correct information before getting worked up. The pharmacy technician tried to resubmit the request, but it was denied a second time. By this point, the girl was not interested in helping Susanne out any longer. She just wanted her to pay the full cost of the drugs so that she could move on with her day. Unfortunately, she didn't know who she was messing with. Susanne stuck to her guns. She knew something was amiss. Susanne requested to speak with someone else. Within a minute of the new person investigating the problem, it was resolved. Susanne was beyond frustrated with the entire situation. To make it worse, Moppy told Susanne that the original person helping her didn't want to dispense the aspirin because she said that Paxton was too young for that medication. Was she a doctor? Did she not she the prescription request for that medication from Paxton's cardiologist? Paxton was required to be on that medication. It didn't matter what she thought, it wasn't her choice.

Moppy finally arrived at Susanne's house. It was much later than both of them had expected. She stepped up right away with helping Susanne sort through everything. She was able to finish taking care of the little odds and ends while Susanne moved things from suitcase to suitcase until it all fit. Julie showed up right on time to take them to the airport. Everything was ready to be loaded in the car with the exception of Paxton. Susanne just had to change his outfit and strap him into the car seat before they headed out. They were so thankful that Julie was available to transport them. It helped them out tremendously. Caleb came along for the ride, but was sound asleep the whole way there. Paxton enjoyed his company nonetheless.

They got to the airport and checked in right away. It was pretty vacant so they knew they would have plenty of time to get to the gate. They were flying JetBlue again because it was one of the few airlines that flew direct to Boston. It was also the cheapest option in most situations.

Paxton was fighting falling asleep the entire flight. It was the first time that he didn't sleep a wink in the air. She was hoping that once he was back in his stroller he would settle. He didn't cry or scream at all. It was so nice that she hadn't been "that girl" with the baby that made the flight unbearable.

Right on cue, Paxton graced them with a dirty diaper as they were landing in Boston. Susanne remembered the mess he had made every time before so she was cognizant of her every move. When she finally got to a restroom, she realized her efforts were futile. Paxton had managed to explode out of his diaper and up his back just like last time. It was so bad that it even soaked through his outfit onto his car seat lining and even the straps. It was a given that they would have to do a load of laundry tonight.

Moppy and Susanne took time to grab a bite to eat at the airport before jumping in a cab to get to their final destination. It was nice to finally take a moment to regroup and relax. They met some very nice people while eating dinner. Everyone was in awe of what Paxton had been through. They took note of Paxton's incredible strength and, of course, good looks.

After dinner, they headed straight over to the Yawkey House. Once they checked in, they had to get right to work. They had to get Paxton set up with his next feeding and administer his next set of medications. He was due for another diaper change, but thankfully didn't need an outfit change again. Doing a load of laundry was a must. They had to include the car seat cover as well. They could only hope that it would be dry by the morning before they had to head out for his 8:00am appointment. By the end of it all, it took them almost three full hours to get to a point where they could sit down. It had been a long day. They couldn't wait for their heads to hit their pillows.

Brrrrrrrrrrrrrrrrrrrrrrrrrr!

Susanne worked half of a day at work today. She had to head back to VA tonight because she was flying out tomorrow to head up to Boston for Paxton's next surgery. She didn't end up getting home until around 1:30pm. Poppy helped Susanne try to expedite the process of getting on the road so that she could get home as quickly as possible.

Even with help, Susanne didn't get on the road until 4:00pm. It was always such a production to go anywhere. She was getting tired of living out of a suitcase, but she didn't have much choice. Since she had been doing it for so long, she thought that the process would be shortened....obviously not.

She decided to pack a bag of tasty treats for the trip. She didn't take the time to eat lunch when she got home because she just wanted to get on the road. She made sure to take enough to tide her over for the whole way. After filling her tank up with gas, she decided to get a large sweet tea from Bojangles as the last addition to her collection of treats. She hadn't had sweet tea in so long and was looking forward to it.

Just like always, she had a six hour drive to get through. She did surprisingly well for not getting a lot of sleep and working half of a day. The frustrating part of the drive was that she was on the phone the entire time. She usually enjoyed this, but not when the phone calls were mainly focused on the recent water heater issues. She went back and forth between the home warranty company, the insurance company, the claims adjuster, the water mitigation company, and the heating and plumbing company. She was trying to figure out who was going to cover the water heater pan that was damaged. The home warranty company said that they would cover the water heater after the deductible was met, but not the pan. The insurance company said they would not cover the water heater after the deductible was met, but only the water damage that occurred from the water heater. If the pan was cracked due to wear and tear, then it would not be covered. Everyone was throwing their hands up and no one wanted to take responsibility for it. It made it difficult to get in touch with people because it was after hours for most people. The main problem was that the gentleman that was replacing the water heater was at the rental property and needed to know what to do. In addition to all of the chaos, Paxton was crying in the back seat. Susanne could feel her blood pressure rising out of frustration and had to pull over. Her temper was getting short with people that were not being helpful. She took a moment to breathe deeply and take care of Paxton. He always made everything better. She changed his diaper and held him for a few minutes. Once he was settled, she strapped him in and got back on the road.

When Susanne finally arrived home, she immediately noticed that it was colder in the house than usual. She had purposely turned the heat down while she was away, but this was way too cold for what she had set it at. She checked the thermostat right away. It read 42 degrees. She checked the setting, which was still reading 60. For some reason, the heat wasn't working. Could it be broken? She noticed that the sign for low batteries was blinking. She was hoping this was a quick fix. She switched the batteries out for new batteries that she had found in a drawer. Unfortunately, nothing changed. She called Scott to get some advice. It was way too cold for her, let alone Paxton. She decided to leave him in the warm car until she figured things out. She tried probably five sets of batteries from other functioning electronic devices and other batteries that were from a previously opened pack. She tried messing with the day and time on the thermostat. She tried adjusting the programmed heating schedule. She even tried to look in the basement at the furnace to see if the pilot light was on. No matter what she tried, nothing worked. After an hour and a half of trying to figure things out, Susanne was frozen to the core. She could no longer feel her feet and she was shivering. She could tell the cats were not happy either because they were balled up as tight as they possibly could be and didn't budge from their chosen spot. Susanne called the emergency number to the gas company to see what she should do. They informed her that they could not help her and she would need to call a HVAC company for assistance. Susanne tried calling Moppy and Chief to see if they could come over so a second pair of eyes could glance at things. Eventually, she couldn't stand it anymore. She had to get out of the house. She was going to have to ride around in the heated car until she figured out what to do. If the heat was truly broken, she would have to find somewhere else to stay tonight. This was not in the plans. It put a major damper on things especially since she still needed to pack for her trip to Boston. Packing for a week and a half for anywhere was a big undertaking. To do this for not only herself, but a child whom had medical issues on the actual day of travel would be a nightmare.

As she was driving, she thought that she might as well go to the grocery store and purchase a fresh set of batteries that were UNOPENED just for the heck of it so she could truly say she tried everything. Out of the two grocery stores that were close-by, she happened to choose the one that was closed. Luckily, the other one was open 24 hours, but now she had to drive out of her way to get there. By the time she got home it was now close to midnight. She prayed that this would solve the problem. Once she inserted the batteries into the thermostat, the flashing low battery sign stopped. Hallelujah! Praise the Lord! The heat kicked on immediately. She didn't understand why the multiple sets of other batteries didn't work, but at this point, she didn't care. The thermostat now read 40 degrees. She couldn't wait to get warm.

She started her unpacking process by bringing Paxton in first. She got him squared away in his bed before moving on. He actually appreciated his cold bed. She prepped his next feeding and caught him up on his missed medications. Next, she turned on the heating pad to warm up a spot on her bed for the cats. They caught on quickly and planted themselves right in the middle of it. It was easy to tell that they were ready to cuddle. She was shocked to discover how hard her Tempurpedic was due to the temperature. It was as solid as a rock. She was hoping it would soften up some before she had to climb in. She knew that wouldn't be for a while so she wasn't worried.

A load of laundry was started and the cat litter was scooped. She listened to the eleven messages that were on the answering machine. After one hour of the heat starting up again, it had only warmed up by five degrees. It was going to be a while before the place truly warmed up. Somewhere in the middle of all of this, Susanne scarfed down some dinner. She pumped to try to stay on somewhat of a schedule and then the packing began. She had to unpack just to repack for the next trip. She had to call it quits by 3:00am or she wouldn't survive tomorrow. Hopefully, she would get it all done.

On The Night You Were Born

One of Susanne's dearest friends gave Paxton a special book for his birthday that was worth sharing with everyone. The moment Susanne read it, she knew that it had been written just for him. It really grabbed her in a way that no other book had since he was born.

"On The Night You Were Born"
By: Nancy Tillman

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, "Life will never be the same." Because there had never been anyone like you...ever in the world. So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name. The sound of your name is a magical one. Let's say it out loud before we go on. It sailed through the farmland high on the breeze...over the ocean and through the trees...Until everyone heard it and everyone knew of the one and only ever you. Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes. In fact, I think I'll count to three so you can wiggle your toes for me. When the polar bears heard, they danced until dawn. From faraway places, the geese flew home. The moon stayed up until morning next day and none of the ladybugs flew away. So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for geese honking high in the sky. (They're singing a song to remember you by.) Or notice the bears asleep at the zoo. (It's because they've been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely...it's whispering your name again!) If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it's because they're all hoping to see you smile...For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again...Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

Bacon Cheeseburger with Fries Oh Me Oh My!

Everyone started stirring a little after 8:00am. Susanne had been the only one that had been up prior to that to feed Paxton. Aunt Leah, Parker, and Gigi helped Susanne and Scott clean up the house a little bit before getting on the road. Scott and Susanne knew that they would be far behind them. They had so much to do before they could even consider heading out.

Paxton had a low key day. He played on his play gym while Susanne and Scott packed. Susanne had to go through stacks and stacks of papers to make sure that she did not overlook any bills or items that needed addressing this week. Also, she spent some of her time trying to get in touch with the heating company that was supposed to call her yesterday to address the leaking water heater at their rental property. This was the second time that this had occurred in less than one month. Everything always seemed to pile up at one time. It was a lot for her to worry about especially with the week she had in front of her. She was driving back to NC today. She would be working Tuesday and Wednesday. Then, she would have to drive back to VA on Wednesday night just to turn around and fly out to Boston on Thursday for about two weeks. The stress of dealing with anything outside of her norm was difficult for her. She wanted to be able to focus on Paxton and his upcoming surgery. She wanted the rest of the world to just stop for a moment.

Susanne and Scott finally got on the road almost five hours after Leah, Parker, and Gigi left. The only hold up at this point was that they still had to get gas, eat some dinner, and stop by the townhouse to take pictures of the water damage before they could start their journey back to NC. Susanne had decided to finish out the week celebrating Paxton turning one by continuing her dairy and soy filled binge marathon. Her request for her first meal out that had no dietary restrictions was her favorite bacon cheeseburger and fries from TGIFriday's. Susanne and Scott had done years of research on who made the best bacon cheeseburger. Time after time, they always seemed to pick this one. Susanne was so excited for the first bite. When it finally came, she was in heaven. Oh, how she had missed cheese.

Susanne was driving in hopes that Scott could get some work done during the drive. This didn't last long. Recently, anytime Susanne drove she would start to fall asleep. It was like a Pavlov's response. Within the first two hours of the drive, they had to switch. Scott encouraged her to take a nap for the rest of the trip. After a delicious treat of ice cream, she closed her eyes. Susanne had not had ice cream for far too long. This was probably her favorite thing in the whole world. She was enjoying her reintroduction to dairy and soy all too much. She just hoped that Paxton would enjoy it as well. She would know soon enough.