Good Morning Sunshine!

Scott and Susanne arrived at the hospital around 8:30 am to make sure that they did not miss a thing. Upon arrival, they noticed that the nurses had so kindly swaddled Paxton up nicely in lots of receiving blankets. The problem with this was that Paxton got overheated very easily. Susanne had mentioned this when he was admitted yesterday, but they must have forgotten. Most babies would love to be swaddled all nice and cozy like he was, but for him it made him miserable. Susanne immediately noticed that he was drenched in sweat and he was basically panting. This was not really helping him to gain weight by burning all of those calories. As Paxton was waking up, when Susanne was unswaddling him, he recognized her face and gave her the biggest smile. This was a precious moment.

The speech therapist stopped by Paxton's bedside for his 9:00 am feeding to see if she could get him interested in his bottle. She had some success, but she could definitely see how sensitive he was to anything going into his mouth.

The cardiology team came by to touch base and get a medical history. They discussed their experience with children with Ebstein's anomaly and went over the diagnostic tests that they were interested in performing during Paxton's hospital stay. He would basically get a lot of the same tests repeated that he had already had done by his cardiologist back home. In saying that, the doctors weren't expecting to discover any major change in the status of his heart condition, but it would be a good baseline for them to be able to make their own assessments. After they gathered all of the information that they needed, they planned to discuss Paxton's case at their conference on Friday. Once they got everyone's input, they would be contacting Scott and Susanne with their thoughts and suggestions.

Paxton did well throughout the ultrasound of his heart. They usually have to sedate their patients in order to be able to get the best results, but Paxton slept through most of his ultrasound. The only part that he really disliked was when they put the ultrasound probe on his neck area under his chin. It must have been uncomfortable for him.

Paxton had his barium swallow study scheduled for around 3:00 pm. When they came to take Paxton down for the test, they informed Susanne that the way he would get down to radiology was by her carrying him while they pushed her in a wheelchair. This was Susanne's first time ever in a wheelchair. Both Paxton and Susanne had such a fun ride together. Paxton especially liked the extra breeze that they got from their trip.

Paxton's mommy and daddy were very excited because they got to stay in the room during the procedure. Paxton's daddy ended up vidotaping the entire process, which was really cool. The way that the barium swallow study worked was that they gave Paxton a variety of barium liquids that were different consistencies and took continuous x-rays to get real time moving images. This way they could follow the liquid from the time it entered his mouth to when it emptied into the stomach. The information that they gathered showed that Paxton had difficulties with the oral phase of swallowing. This was the phase where Paxton should be able to voluntarily organize the food to go from the front of the mouth to the back of the mouth in preparation to be swallowed. He was very protective and resistant to any fluid in his mouth. He was very guarded and it was easy to tell that he was anxious during this process. The great news was that once the food reached the back of the mouth, near his pharynx, he was able to swallow the liquid appropriately. This confirmed that the involuntary part of swallowing was intact and he showed no evidence of aspiration of the liquid into his airway or lungs. This made the doctors comfortable with the decision to allow Scott and Susanne to continue to try to feed him by mouth. Once the study was over, Paxton was a hot mess. He looked like he had gotten into a jar of Marshmellow Fluff. What a cute little fluffernutter.

Susanne and Scott stayed well into the evening until Paxton was transported to a different floor for his sleep study. Earlier in the afternoon, the nurses needed to place an IV catheter in one of his arms so he could receive fluids throughout the evening to prevent dehydration. His vessels were so scarred up from all of the poking and proding he endured during his initial hospitalization. They were so bad that the nurses were smart enough not to attempt to do it themselves and instead called in an advanced team of phlebotomists. Luckily, Paxton only had to be poked once. The phlebotomist got the catheter in on her first try. Paxton's mommy comforted him the entire time and he was such a brave, big boy. Right before he was relocated the nurses removed his NG tube. It could not be in during the sleep study because it could cause false positive results for obstructive apnea. No one wanted to risk that.

Once they all arrived in Paxton's new room for the night, the nurses started hooking Paxton up to every wire known to man. He had more wires connected to him for this study than he did after his heart surgery. He looked really pitiful. It was difficult for Susanne and Scott to see him in this state. It definitely took him a while to settle down. Once he finally fell asleep, Susanne and Scott left for the evening. They were hoping to make it to the Mexican Restaurant near their hotel before it closed. Andale, Andale, Arriba, Arriba!

Get Er Done!

Paxton was admitted into the hospital at 9:00am this morning. He had a private room with it's own bathroom which was nice. It was amazing how comfortable Susanne was in the hospital setting. It was not surprising since Paxton had spent the first 8 weeks of his life in that environment. It was definitely a different feeling for Scott and Susanne this go-round. Instead of being worried, anxious, emotional wrecks, they were excited to finally get some answers.

At last, Susanne and Scott got to meet the core set of people that had arranged this meeting of the minds. They were informed that Paxton's primary doctor was going to be a geneticist that was also a licensed pediatrician. Through their department, they would consult with other medical professionals that may have insight on Paxton's health status. After all was said and done, they would meet with them a final time to put all of the puzzle pieces together to see the big picture. This made Susanne and Scott very happy. Why had it been so difficult for everyone to get this concept in VA and DC, but for the team at CCHMC it was a no brainer?

Paxton's day was booked solid with consults and tests. He was first evaluated by the genetics team. They did a thorough job with getting a complete history. Susanne came prepared with an outline of Paxton's history from the day he was born, through his stay at the hospital throughout the first 8 weeks of his life, up until now. She made sure to include the doctors' overall assessments, any tests that were performed, any turn of events, and follow up instructions. When they asked Susanne to recall events that occurred during her pregnancy, she was shocked at how difficult it was to remember those details. She came to the realization that her brain must have been completely overloaded at that point.

The speech therapist stopped by to meet the Padilla family and to do her initial evaluation of Paxton. She started off by working with him on the non-nutritive sucking by using his favorite wubbanub pacifier and a gloved finger. She was pretty impressed with his performance and she thought that he was better off than she had anticipated. Next, she attempted to try an oral feeding by using the Haberman bottle that Susanne had brought from home. She was able to get him to take about two to three mililiters by mouth in the sidelying position. This was pretty impressive especially since he had been refusing the bottle over the last couple of weeks. At the end of the therapy session, the speech therapist informed Scott and Susanne that Paxton was signed up for a barium swallow study the next day. They were hoping to get some good information from that test.

An ears, nose, and throat clinician stopped by Paxton's bedside to examine him and to perform endoscopy of his nasal passage and the back of his throat. Luckily, everything looked normal. This was a huge relief for Scott and Susanne. Before he left, he examined Paxton's ears for any evidence of fluid accumulation. This was typical for children that had Pierre Robin Syndrome. Paxton's ears continued to look healthy and showed no signs of infection. So far, so good.

Scott and Susanne's friend, Kelly, came in on her day off to be there with them to make sure things went smoothly. She made a point to be present during the times that he was being evaluated or receiving therapy. She wanted to be able to advocate for Paxton as much as possible. She also wanted to be able to make her own assessments from what she had seen or heard. Later in the day, she offered to sit with Paxton so that Scott and Susanne could grab something to eat. They had decided to purchase a couple of five dollar coupons to take advantage of a sweet meal deal that the hospital offered. For that low price, you could get an entree, two side items, dessert, and a drink. They went to the cafeteria and carefully made their selections. When they got to the check out line, the cashier informed them that they could only benefit from this deal if they ordered the food from the hospital room. After much discussion, the manager stood by the rules and would not allow them to use their coupons. Instead, Scott and Susanne had to put back over half of their selections. The hot items they did not want anymore were just thrown out, which made no sense to them. In the end, their lunch was twelve dollars for half the items. This kind of stuff always seemed to happen to Scott and Susanne.

The genetics team came back after lunch to touch base and to discuss their opinions. They did not want to give many details until all of the tests had been completed and the results were back. The one thing they did mention was that they were really confident that there had to be one underlying genetic disorder that had caused the other conditions to occur. This was confusing to Scott and Susanne especially since all of the genetics tests had come back normal.

Scott and Susanne spent the evening trying to recap everything that had happened that day. They decided to go ahead and use the coupons they had purchased earlier for their dinner. It ended up being perfect because they were able to spend more time with Paxton this way. They ended up leaving just in time for Susanne to make it back to the hotel to catch the first episode of "The Bachelorette". She couldn't wait.

Look Out Ohio...Here We Come!

Scott and Susanne spent most of the morning packing, packing, and more packing. Even though this should not surprise them by now, it was alarming how full the car was when they were all said and done. There wasn't even room for their feet on the floorboard.

Susanne decided to drive most of the way up to Ohio so that Scott could potentially work on his dissertation. This didn't end up happening because it was too difficult to find the space that was needed to lay everything out. Also, as most of you know, it's easy to get car sick when having to read in a moving car. They at least had good intentions.

The entire car ride was quite comical. If it wasn't one thing, it was another. For most of the ride up to Ohio, it rained. In the beginning it was a heavy down pour that made it difficult to see and frustrating to drive. All along the way, Susanne had to pull off at different exit ramps during the trip for Scott to change Paxton's diaper. It's common knowledge that the only time Paxton ever cried was when he had a wet diaper and he did a great job of letting mom and dad know everytime. In West Virginia, a cop pulled up behind them to make sure everything was okay. Once the cop knew that it was just to change a dirty diaper he let them be.

The other challenge that they discovered was trying to set up Paxton's feedings and give him medicine without having to pull over everytime. The limited space complicated the situation. The bottle warmer that Susanne got at one of her baby showers came in very handy on this trip. If they did not have this piece of equipment, then they would have to stop somewhere for hot water to warm the milk at each feeding. That would have been a big pain.

Susanne also had to find time to pump along the way. Oftentimes, when they would pull over to change Paxton's diaper, it would coincide with when Susanne needed to pump. She was doing really well until the end of trip when the batteries died. Luckily, they were a few hours from the hotel at that point.

Moppy had packed Scott and Susanne some lunches to try to help minimize the number of times they might have to stop. Susanne had also prepared some food that they would be able to eat throughout the week to try to help save some money. This was also easier than trying to figure out what was safe and what wasn't safe for Susanne to eat when they were out and about.

Scott decided to drive the last two hours of the trip so Susanne could take a break. Later that night, they arrived in Cincinnati. They were both very excited to be there and very excited to finally get some well sought after answers. Their family friends were so kind to set them up in a hotel that was close to the hospital. It was an Extended Stay Hotel that had a full functioning kitchen. This was a major perk for Susanne because of all of the food she had brought as well as all of the milk she was sure she was going to pump over the next week. The biggest perk was that it was located right next to a Mexican restaurant. SCORE!!!!

When they arrived, they were greeted by a basket full of goodies. The Dreyer family had put together some things that would make their week go a little bit better. There was a variety of fruit, chips, salsa, magazines, soda, and an extra special treat for Scott...Mike and Ikes. Susanne also got a special birthday card from the Dreyer family. It was a nice way to start off the trip. The Dreyer family also set up their pack-n-play in the hotel room for Paxton to use. It was so nice to have this available because there was no way they would have fit Paxton's pack-n-play in the car.

The rest of the evening they spent settling in. Scott and Susanne made time to spend with Paxton. They were both able to get him to smile quite a bit and Paxton almost even laughed for daddy.

Rest was top priority since they had a big day ahead of them. It was hard to achieve this when they had to get up every three hours to feed Paxton and Susanne had to pump, but somehow they made it work.

Moppy Saved The Day...Again!

Scott was able to take off the next week so that he could go with Susanne and Paxton up to CCHMC. He decided to stay in Pennsylvania until this evening so that he could get as much work done as possible before the trip. Moppy ended up coming over last night to help out so that Susanne could get some sleep before heading off to work today. She ended up watching Paxton at the house instead of at Susanne's work because there was no room in the nursery. Susnne was hoping that this would prove to be less stressful for Paxton and less stressful for Moppy.

The day went smoothly for all. Susanne was at work later than expected tying up loose ends. She knew she would be gone for the next week and she didn't want to leave anything behind for someone else to have to take care of. She was a little stressed because she knew that she still had to pack for the big trip. Packing the night before or even the morning of was a common thing for Scott and Susanne because they were procrastinators at heart. This would pose a problem because they didn't just have to pack for them, but for the bug too.

They all ate dinner and watched a little bit of TV before heading off to bed. Scott and Susanne knew they had a big day ahead of them so they wanted to sleep as much as they could. Thankfully, Moppy saved the day again by staying overnight and doing all of the feeding shifts. What would they do without her?

Desperate Times Call For Desperate Measures

Paxton decided that he was going to catch up on sleep today. Susanne was noticing that whenever she had to take him outside of the house for anything, he would spend the next few days recovering from that stressful change. He did a good job of letting his mommy know when he needed to catch more Zs.

During the day, whenever Paxton was awake, Susanne made sure to utilize the time wisely. She worked on many different exercises with him and even practiced some baby massage. She made sure to make plenty of time to be silly. She got him to smile a lot and she almost even made him laugh. She tried to get it all on video, but she quickly realized that this was a bit of a challenge. The reason that it was so difficult was that what Susanne was doing to make him smile so much required two free hands. It was quite comical. Susanne was so excited that Paxton had met this milestone. She could not wait to show Scott how much he was smiling. It was very rewarding.

When Paxton napped in the afternoon, Susanne finished cooking some of the things that she didn't get to finish the other day. She baked two loaves of banana bread which turned out better than expected. Despite having things like applesauce and molasses in it, no one could even tell. This was great news for Susanne.

Susanne spent the rest of the day trying to tie up any loose ends before the whole family headed up to Cincinnati Children's Hospital Medical Center on Sunday. She had been consulting with Kelly, a close family friend that was an occupational therapist at CCHMC, from the day Paxton was discharged from the hospital. She and Leah, Susanne's oldest sister, had been the only therapists willing to work with Paxton and try to find a solution to his oral feeding difficulties. They had lent their expertise and knowledge on multiple occasions and were both getting extremely frustrated with the lack of concern that the other providers were showing. Kelly had been keeping the doctors at CCHMC abreast of Paxton's situation and trying to get any advice she could find on what could be done for the poor guy. She had offered multiple times for Scott and Susanne to bring Paxton up there for an evaluation if they were interested. Finally, Scott and Susanne had reached a breaking point and decided it was time to take matters into their own hands. They desperately wanted a team of medical professionals to take Paxton under their wings and help manage his multiple medical issues. Susanne was tired of everyone just focusing on their specialty and forgetting the other problems that were contributing to Paxton's overall failure to thrive. The team at CCHMC claimed they could do this for Paxton, so it was the only logical next step.

Sleep...It Does A Body Good!

Susanne was completely exhausted and it was difficult to function normally in her environment. It was definitely taking a toll on her body to be so sleep deprived.

Susanne had a meeting at work with one of her bosses around 2:00 pm. After the meeting, Paxton got to hang out with some of Susanne's peeps for a little bit. Susanne had been telling some of her co-workers that Paxton had been smiling at her, but primarily when she would make monkey noises. Aunt Julie decided to try this out and it worked. Paxton smiled at Julie for the first time. It was so adorable. Paxton got a lot of snuggle time and he was really well behaved. Susanne decided to weigh him on one of the baby scales at work before they left. He weighed a total of 9 lb. 14 oz.. How awesome was that!

Once Susanne and Paxton left her place of work, Susanne decided to run a couple of errands. Before leaving the parking lot, Susanne had to set up Paxton's NG feeding. After that was set up, Susanne and Paxton left to run a couple of errands. As always, they did not get as much done as they had hoped. Susanne had found that it was so difficult to continue to take Paxton in and out of the car to
just quickly run in somewhere especially when he was connected to his feeding.

Susanne had run out of breastmilk bags that she used to pump directly into for fast, easy storage. She decided to pick some more up on her way home. In the store, she selected a different brand of bag because it was so much cheaper. Susanne later realized the reason behind this price difference.

When Susanne got home, she went upstairs to pump. She started using the new bags. Susanne was bummed when she found out that the new type of bags did not have a self stick strap that attached to the breastshield so that she could pump directily into the bag. Instead she was supposed to pump into bottles and then dump the milk into the bags for storage. This was not going to last long because Susanne didn't need to add anything else, like washing more dishes, to her day to day. Susanne had already attempted to use the bags when she realized the difference so she decided to just use them this one time. Halfway during the pumping, Susanne watched Paxton reach for his NG tube and give it a few tugs. Susanne tried to talk him out of it, but she got nowhere with that. Susanne simply stood up to try to turn off the pump and set everything down so she would have a free hand. Then, disaster happened. One of the bags fell off and the entire 4 oz. of breastmilk spilled all over the bed and comforter. This wouldn't be as tragic as it sounds if she had a functioning washing machine. Why can't anything just be straightforward and simple?

Colleen came over for "Pajama Party Thursday". Susanne was very excited to see her. Paxton was a little fussy throughout the earlier part of the evening, which was unlike him. No matter what they did to try to calm him, he would get agitated shortly after they left his room. Finally, they got him to fall asleep. Colleen and Susanne caught up with each other and discussed what had been going on in their lives. Shortly thereafter, they were off to bed. Susanne was so relieved to have someone over to help with the feedings. Sleep was underrated.

Disaster

Susanne had decided to tough it out and do all of Paxton's overnight care by herself. She thought that going to pick up Moppy last night just to head back out in that direction this morning would have been counterproductive. Susanne was curious to see how this would affect her day at work.

Susanne was having a great day until her last appointment. She was technically finished for the day, but she decided to take one more appointment to try to help out another doctor that was behind. It was supposed to be straightforward and routine. When Susanne entered the exam room, the patient was very anxious and panting frantically. This dog was extremely stressed with just being in the veterinary clinic. Susanne did the physical exam and gave some vaccinations. Shortly after the vaccinations were given, the dog's breathing changed a little. Susanne sent the owner outside with the dog to see if taking her out of the stressful environment would help to calm her down. After finishing the medical notes and getting everything in the computer for check-out, Susanne went outside to check on the situation. The dog was still anxious and panting, but the owner felt like this was normal for her. They indicated that sometimes it would take anywhere from three to twelve hours to recover from a visit to the veterinary office. Susanne offered to keep the dog for observation or for the owner to take the dog home for monitoring. The owner decided to do the latter because she worried that leaving her at the veterinary clinic would exacerbate the problem or make the stress level rise even more. Not even twenty minutes later, Susanne received a phone call from the owner saying that the dog was now vomiting in the car. This had now turned into an emergency situation. The owner was instructed to bring her back in immediately. By the time they had arrived, the dog was turning blue. A team of five doctors, including Susanne, intervened. They started CPR and gave a variety of drugs that should help jump start the heart. Unfortunately, it was a little too late. The patient passed away on the table after working on her for at least twenty minutes. Susanne was devastated and mortified. It appeared to be a case of anaphylaxsis associated with the vaccinations that had been given earlier in the evening. The patient had no history of any vaccine reactions. If only we could have a crystal ball that would allow us to predict awful events like this before they happen. Susanne's heart ached for the owners. She knew exactly what they were going through because of the recent unexpected loss of Maverick. She was still affected by the loss of such a loyal companion...a family member.

Susanne had to write an incident report about the entire situation. The plan for tomorrow was to contact the pharmaceutical companies that manufacture the vaccinations for them to review the case.

Finally, Susanne finished all of the paperwork. She ended up not getting home until close to 1:00 am. She was again by herself for Paxton's overnight care. She wasn't sure how she was going to manage this. What a crappy ending to her day.

Iron Chef America

Susanne decided that today was the day she would get back in the kitchen and cook it up. She had always had a passion for cooking, but recently she could not find the time to dedicate to it. She had previously picked out a few things that she wanted to make. She had spent some time looking through different cookbooks to find diet friendly recipes. She wanted to find some that were dairy free and soy free, but still tasty. It was much easier than she had expected.

Susanne had picked out a few recipes to try. One recipe was a pasta dish with pancetta, asparagus, and roasted pine nuts. Another one ended up being a beef pot roast with vegetables that could be set up in the slow cooker. Finally, Susanne needed something sweet to go along with everything so she was going to make some banana bread. It was surprising to her the things that were recommended as substitutions for the dairy and soy products in the recipes. It was even more amazing that it was difficult to tell the difference. Her favorite part about cooking was that she could be creative. Even though she would use a recipe some of the time, she always made adjustments and tweaked it to her liking. Susanne knew that she might have bitten off more than she could chew, but this realization came a little too late. The prep time took much longer than she had expected. This posed a problem because Paxton was on such a strict schedule. Even though Susanne didn't have one secret ingredient to work with, she still felt like she was on Iron Chef America racing the clock. She was juggling multiple tasks at once. Stirring this, chopping that. You get the idea. It truly felt like she was in Kitchen Stadium...allez cuisine!

Even though she tried so hard, she did not get to the banana bread. She would have to save this for another day.

Always Looking Over My Shoulder

This morning, Susanne and Paxton had to drop Moppy off at the Metro so she could get to work. She took the Metro everyday to work, but she usually drove herself. Unfortunately, with all of the car trouble Scott and Susanne were having, she had to adjust her routine. On a positive note, this meant that she got to be chauffeured around and dropped off at the "kiss and ride". Susanne and Paxton waved good-bye to Moppy and she was well on her way.

From there, they headed off to Paxton's cardiology appointment. Overall, the cardiologist thought that Paxton looked stable. His oxygen saturation levels were about the same as the last time and his ECG looked comparable as well. At this visit, he was scheduled for a follow up heart ultrasound. This always made the appointment last extra long. The last one had been over a month ago so he was well overdue for a recheck. Paxton got a little agitated this time when they were scanning his heart. It was a little uncomfortable for him when they had to place the probe up near his neck. The nurse was getting frustrated and could not quite understand why Susanne just couldn't give him a bottle or pacifier. Susanne tried to remind her of his other medical conditions and inform her of his aversion to anything in his mouth at this time. For most babies, a bottle or pacifier would calm them down, but for Paxton it would elicit the opposite response. Paxton always went against the grain.

The cardiologist evaluated the heart ultrasound before Susanne and Paxton left the office. The good news was that his heart was looking stable. The BT shunt that was surgically put in place was still wide open. Over time, Paxton would outgrow this shunt. It would be at that time that the cardiologist would decide what the next step would be. Susanne had already been prepared that it would be a surgery of some sort, but they just did not know what the best approach would be quite yet. The cardiologist also thought that she saw some evidence of blood flow through his pulmonary artery, which had not been present before. This was a positive sign that the right ventricle was functioning a little bit better than before and starting to do it's job. Also, the abnormal hole between the right and left atrium was showing blood flow in two directions instead of just one. The cardiologist also thought that this may be a positive change. Unfortunately, neither of these findings would change the plan of action or course of treatment at this time. The idea was that he would still need his first reconstructive heart surgery around six months of age.

After the appointment, Paxton was behind on his feeding schedule and Susanne was behind with her pumping. Once Susanne got Paxton out of the pouring rain and situated in the car, she decided she needed to address both issues as soon as possible. Susanne ended up moving the car to a more private area of the parking lot. In addition to it taking a lot of time to complete both tasks, there was also a lot of prep work that went into setting up for both things. She wasn't sure why but, she always felt like she was doing something illegal when she had to do this. There was this sense of paranoia like she was going to be caught in action doing something wrong. She was always looking over her shoulder to see if anyone was around or watching. She kept an eye out for onlookers and tried to remain very hidden from plain sight. Even with Paxton's feeding she felt on guard. She was sure people would question why she had a stethoscope, syringes, and other equipment. She chuckled at the thought of someone trying to figure it all out. No matter what, a mom's got to do what a mom's got to do, right?

Once they finally got home, they both spent the rest of the day trying to get back on schedule. If time allowed, Susanne was hoping to catch up on a few things as well. Good luck with that...Susanne should have known better.

Paxton's First Babysitters

Scott spent most of the day working more on his dissertation. Susanne tried her hardest to stay out of his way. She ended up doing a lot of exercises and playtime with Paxton. It was easy for her to see that he was doing much better with his ability to lift his head. He was getting stronger each and every day.

As a birthday gift to Scott, Aunt Leenie and Uncle Loonie had offered to babysit Paxton whenever he needed them to. This worked out perfectly because Scott and Susanne had a couple's massage scheduled for this evening so they took them up on it. When they returned from their peaceful oasis, they were ready to eat. Susanne and Scott invited the Neumann's to stay for dinner. They ended up grilling up some hotdogs and serving them with chips and watermelon. Susanne was in heaven. She had been craving hotdogs throughout her entire pregnancy, but she could not have them due to the concern for Listeriosis. Now that she could have them, she just had to make sure to find ones that were dairy free and soy free. This ended up not being as hard as she thought. Susanne hearts hotdogs.

As the evening progressed, Scott had to start thinking about heading back to his apartment, but there was one problem...the car that was in the shop was still not ready. This meant that Moppy had to come over so that Scott could take her car to Pennsylvania. This left Moppy without a car at all until the car was finished. For now, the solution was for Susanne to take Moppy to the Metro Station tomorrow morning and they would figure out the rest later.

Oh, Charlie!

Susanne headed off to work early in the morning. She was hoping that the day would go by quickly because Paxton was going to have his first playdate that evening. Susanne had a great day. One of the clients that Susanne saw today gave her a wonderful compliment. The client was pleased with how Susanne interacted with her cat and told her that she definitely got into the right profession. This meant a lot to Susanne because she was so passionate about her job and she was just glad that someone noticed that. Susanne was excited because she finished her paperwork in time to be able to go to lunch with her good friend Cory. This was a common practice for the ladies to do every Saturday that they worked together. They had not done this since Susanne had left on maternity leave. It felt good to be able to start this tradition back up again. Susanne always enjoyed her time with Cory. They were never at a loss for words.

Susanne finished up in a timely manner. She got home shortly after the Downes family had arrived. Susanne could not wait to meet Charlie, who was the new addition to their family. Once she saw him, she immediately fell in love. He was exactly two weeks younger than Paxton and was as cute as ever. Also, it was so awesome to see Scott and CJ, who were childhood friends, go through another life changing experience together. They had already been through so much together so to be able to see them share the joys of fatherhood was very touching. Charlie slept through the first part of the playdate, but later he was wide awake. They even got to hear him laugh for the first time at one of Paxton's toys, which was a bug that jitters. Once the babies were sleeping, they were able to celebrate Scott's birthday with some apple pie and ice cream...that is everyone, but Susanne. She had some mango sorbet that she bought specifically for herself. It was delicious. Scott and CJ wanted to prove that they were still youthful by knocking back a tequila shot. They took it like true fraternity guys would. All in all, it was a wonderful evening. The Padillas loved anytime they had with the Downes family. They hoped that this would become more of a routine occurrence.

Happy Birthday Daddy!

Paxton was excited that his daddy was coming home tonight because he had picked out a very special gift for him. To help pass the time, Susanne and Paxton ran some errands. Susanne tried to time it so that she would not have to feed Paxton in the car, but that didn't work out so well. Susanne quickly realized that running errands with a baby took three times longer than when she was by herself. Not only did she have to take him in and out of the car at every stop, whether it was quick or not, but she also had to deal with spit up and multiple dirty diapers. Susanne wasn't joking about the whole car seat thing being a trigger for all bodily fluids to exit whatever orifice they could find! To make matters worse, it was extremely hot out. It was a challenge to try to keep Paxton cool enough and to keep the sun out of his eyes. Susanne decided to postpone some of the errands on her list. It had proved to be much more of a challenge than she had energy for.

Susanne was excited to celebrate Scott's birthday. She had the entire weekend planned. Over the last few years, Susanne had tried to come up with a theme for Scott's birthday. This year's theme was rest and relaxation. She started off the weekend by taking Scott to dinner. Moppy came over to babysit. It didn't exactly work out as planned, because Scott got caught in a hail storm. This caused him to run so behind that they were going to miss their reservation. They decided at the last minute to meet each other at the restaurant instead of Susanne waiting for Scott to get home. It wasn't ideal, but they made it work. Susanne took Scott to a modern american restaurant in downtown Leesburg called Lightfoot. It used to be a bank that was built in 1888. It was fully restored to be the restaurant that it is today. There was a vault door in the restaurant that was part of the original vault. Scott and Susanne had such a great time reconnecting. They ended up staying at the restaurant until it closed.

At the end of the night, they had to drop off the car that just got fixed at the repair shop again. Over the last week, the car did not start at one point and it seemed extra noisy. Hopefully, it would be finished by Sunday night when Scott had to head back to Pennsylvania.

Before bedtime, Scott opened his gifts. To be consistent with the theme, Susanne got Scott an alarm clock that had an iPOD docking station. In addition to that, it had an option to wake up or fall asleep to nature sounds. He loved it. His next gift was a couple's massage that was scheduled for Sunday afternoon right before he would have to head back to Pennsylvania. This was something that they both desperately needed, especially with the amount of stress they had both been under recently. Susanne had also set it up so that Moppy could watch Paxton all day Saturday while she was at work so that Scott could have time to work on his dissertation without any interruptions. Paxton got his daddy some stickers of motorcycles because he knew how much his daddy liked them. Paxton also knew that his daddy was bummed about missing the unveiling of the new Ducati that evening so he thought these would help make him feel better. Paxton was so thoughtful.

Happy Birthday Daddy!

Pajama Party

Susanne had started to notice a trend with Paxton when they had to leave to go somewhere. It seemed like whenever Paxton was placed in his car seat, he would either spit up, make a dirty diaper, or both. Today on the way to his appointment with his pediatrician, he decided to make quite the mess. By the time Susanne got him into the exam room, he had managed to soil through his diaper, which then leaked onto his outfit, and even onto his car seat. Gross! He hadn't even been in that outfit for longer than thirty minutes. Boys are so smelly.

Paxton weighed 9 lbs. 9 oz. today. His impressive weight gain from the week before seemed to have subsided. Susanne thought maybe Paxton should just hit the gym and pump some iron. She thought Gigi could teach him a thing or two. His oxygen saturation levels continued to be between 85 to 90. Paxton was looking good overall with the exception of his stress level when he was outside of his normal environment. He got so worked up at this appointment that his pediatrician wanted him to be evaluated by the cardiologist if he did not improve once he was home. When he stressed out he would show a variety of clinical symptoms. Most commonly his respiration rate would increase and he would have chest retractions. Chest retractions indicated that there was an increased use of the chest muscles for breathing. The biggest difference today was that there were other signs of respiratory distress which included head bobbing and nasal flaring. Susanne had never seen him this out of sorts.

Luckily, once he was home, he improved and most of the clinical signs resolved. One of Susanne's favorite friends, Cory, came to visit for the afternoon. They all had a great time together. Paxton had to take it easy for the afternoon so Susanne and Cory spent a lot of the time catching up with each other.

After Cory left, Aunt Leenie came over for a pajama party. She brought Susanne dinner from one of her favorite places, Panera. It was actually easy for Susanne to decide what she wanted from there because they had such an awesome website that provided all of the necessary information she needed to determine what she could eat. This was such a nice change from what she had experienced with other places. Susanne quickly realized that this could be dangerous because now she knew exactly what she could safely eat from there. They spent most of the night talking about the events that occurred over the last week. Colleen surprised Susanne because she wanted to learn how to set up Paxton's NG feedings. The purpose of this was so she could take over the overnight shifts for Susanne. She had only ever taken the feeds down, but she was ready to do more. She thought that this would give Susanne more of an opportunity to catch up on some sleep. She always knew exactly what Susanne needed. Colleen caught on very quickly and Susanne was confident that she could handle this. They didn't call her Dr. Neumann for nothing. At the end of the night, they decided that they had such a great time together that they wanted to have pajama parties every Thursday night. Susanne and Paxton looked forward to this.

Everything Falls

you said
you'd never leave or foresake me
when you said,
this life is gonna shake me
you said
this world is gonna bring trouble on my soul
this i know

when everything falls apart
your arms hold me together
when everything falls apart
you're the only hope for this heart
when everything falls apart
and my strength is gone
i find you mighty and strong
you keep holding on
you keep holding on

when i see
the darkness all around me
when i see
the tragedy has found me
i still believe
your faithful arms will never let me go
and still i know

when everything falls apart
your arms hold me together
when everything falls apart
you're the only hope for this heart
when everything falls apart
and my strength is gone
i find you mighty and strong
you keep holding on
you keep holding on

sorrow willl last for the night
but hope is rising with the sun
(its rising with the sun)
there will be storms in this life
but i know you will overcome
but i know you will overcome

when everything falls apart
your arms hold me together
when everything falls apart
your the only hope for this heart
when everything falls apart
and my strength is gone
i find you mighty and strong
you keep holding on

when everything falls apart
your arms hold me together
when everything falls apart
you're the only hope for this heart
when everything falls apart
and my strength is gone
i find you mighty and strong
you keep holding on
you keep holding on

~by Fee

Late Night With Susanne Padilla

Susanne's morning started extra early today. She had to be dressed and ready to go for the day by 8:00 am because someone was going to stop by and take a look at the washing machine. She was hoping that the problem would be solved and that it would be up and running by the end of the day. After the technician made his assessment, he noted that it was a problem with the control panel. Unfortunately, he would not be able to just replace the control panel by itself. He said that he would have to replace the entire motor. The cost for this was close to what it would cost to buy a new washing machine. It was shocking to Susanne that this washing machine was barely three years old and already needed to be reaplaced. Ridiculous.

After the technician left, Susanne had to prepare for the next appointment that was at 9:00 am. Paxton was finally going to have an evaluation done by an occupational therapist and a physical therapist from Early Intervention. Susanne was hoping that they would be able to help Paxton since no one else had been able to thus far. The therapists spent over an hour getting a complete medical history and working with Paxton. They assessed his developmental status and observed his oral motor skills. They were very knowledgeable and they had a wonderful way with Paxton. At the end of the appointment, they gave Susanne a lot of helpful tips to use over the next two weeks until the next follow up appointment. Susanne was relieved. They were finally getting somewhere.

As soon as the therapists left, Moppy, Susanne, and Paxton had to get on the road so that Susanne would make it to work on time. They got Paxton situated in the nursery and then Susanne started her day. Little did she know that she would not be finishing up until after 11:00 pm. This was frustrating because she needed to pump, she was hungry, Paxton was hungry, her pets were hungry, and she still had to drive home before any of these needs could be met. After a day like today, Susanne really needed only one thing...sleep. She knew that this was not going to be a possibility, but it was nice to think about. A girl can dream, can't she?

As I Watch You Sleeping

As I watch you sleeping,
my problems seem so small.
The rewards you have to offer me,
are so big and so tall.

As I watch you sleeping,
I realize just how great your accomplishments are.
I know how much you struggle
to have made it this far.

As I watch you sleeping,
I can't imagine how my life would be without you.
Even through the hard times
I'd be lost without you.

As I watch you sleeping,
I see just how much you have brought into my life.
All the joys and happiness,
all the wonder and excitement.

As I watch you sleeping,
I am overcome with such love.
Your sweetness and happiness,
are something I can't get enough of.

As I watch you sleeping,
I think just how lucky I am.
To be the mother of such
a beautiful little boy.

As I watch you sleeping,
all of my worries seem to melt away.
I know that no matter what happens,
together we can make it through another day.



Written by: Sheryl Trowbridge

Phone Calls, Phone Calls, and More Phone Calls

Today, Susanne spent the entire day making one phone call after another. She was still trying to iron out the multiple problems that she was having with her health insurance company. One would think that after more than ten phone calls to the company, someone would have been able to help solve the issues that Susanne was having. It sure did not seem that way. Susanne also continued on her search for a feeding team to help Paxton, whether it be a speech therapist, occupational therapist, or someone else. She even went to the extreme of calling Children's Hospital of Philadelphia to talk with someone from the department that deals soley with children that have something called velo-cardio-facial syndrome. This is a genetic disorder that is related to DiGeorge's syndrome, which was what they originally thought Paxton had. Luckily, the genetics testing had been within normal limits. These children typically have a congenital heart defect, facial developmental issues such as a cleft palate or lip, and an underdeveloped thymus and parathyroid gland. Paxton's pediatrician thought that this would be a good path to take since these children deal with similar challenges that Paxton was dealing with. Unfortunately, she still came up short. The woman she spoke with indicated that they usually refer these patients to a clinic in New Jersey. Once again, no one was capable of helping Paxton. After all of the phone calls that Susanne made today, she was left with a new list of phone numbers to call. She would have to do these another day.

Getting Nowhere Quickly!

Susanne made Scott a hearty breakfast before he got on the road this morning. She also packed him a lunch to make sure he would have something to eat later. On Scott's way back to Pennsylvania, he had to make a pit stop in Maryland first. He had to go to court today to discuss the speeding ticket he had received a few weeks earlier. Scott was the only one in line to stand before the judge. This was nice because he was in and out of there in no time. The best part about the whole process was when the judge asked the officer if there was anything unusual or noteworthy about pulling Scott over. The officer replied only that Scott was so polite. This made everyone laugh including the judge. Susanne hoped that Scott had learned his lesson. She was also hoping that in the future he would remember the Padilla rule to always drive slow and safe.

Paxton had an appointment with the feeding team from Children's National Medical Center of D.C., but it was luckily scheduled at the Fairfax office. This was such a relief for Susanne because she did not have to drive all the way to D.C. and deal with the traffic like the last time. Susanne was hoping that this appointment would be the breakthrough that they both needed. She had been so upset with the regression of Paxton's oral motor skills over the last week. He had become so adverse to anything coming in and around his mouth that Susanne was limited to what she could do. She was basically doing little to nothing as far as oral feedings go. She did not want to push him too hard because that would only make things worse. She needed help in a desperate way. Susanne made sure to give the speech therapist a complete and thorough history. Susanne kept reiterating the importance of using a gentle approach with Paxton when it came to anything near his mouth. She repeated over and over her frustrations with the lack of assistance she had received thus far regarding his oral feedings. She felt helpless. After the speech therapist evaluated Paxton, she looked at Susanne and said that she was sorry that she could not help them. The doctor actually touched Susanne on the shoulder and told her good luck with everything. She wasn't sad or upset at this point, she was just straight up angry. Susanne could not believe that Paxton could be the only patient in the Northern Virginia/Washington D.C. area that needed this type of assistance. She also did not understand how, out of all of the specialists that he had been seeing, not one of them could find an appropriate person to refer them to. The only recommendation that she left with today was that they felt like Paxton needed to be seen by a gastroenterologist again. There was also some discussion about switching him from a NG tube to a G tube. This would require anesthesia because the tube goes through a small incision in the abdomen and then directly into the stomach instead of down through the nose. Susanne was not opposed to this idea, but she did not think that it was fair to jump directly to this decision because no one had consistently worked with him on oral feedings yet. Susanne was tired of driving all over creation to make an appointment with someone that was supposed to make things better, but leave the appointment with no more information than what she showed up with. She had left the house around 2:45 pm and arrived back home around 6:30 pm. This was getting ridiculous. She was hoping that her evening would be better. She would have to wait and see.

First Mother's Day

Today was a monumental day for Susanne. She was celebrating her first Mother's Day. She had so many emotions running through her throughout the day. Scott and Susanne spent a lot of time reflecting on the past few months of their lives and the road that it took to get them to where they were today. Looking back, they could see that they had come such a long way. In the beginning, it took them such a long time for them to even get pregnant that they did not even know if they would ever be able to celebrate being parents at all. During the pregnancy, there were a lot of ups and downs, however, they remained strong through it all. Once Paxton was born, their whole world was turned upside down. They could have never predicted the rough start to parenthood. They had never worried so much about one thing in their lives like they had about Paxton. Everyday he was alive was a small victory for them. Paxton fought for his life and proved to everyone that he had a will to live. The happiest day, by far, was when Paxton got to finally come home. This was when Susanne really started feeling like a real mother. Since Scott was still away on his internship, Susanne and Paxton were left to fend for themselves. They developed quite a deep bond during that time. Susanne was with Paxton every second of every day watching his every move...his every breath. She never took one moment for granted. Throughout the last few months, she had been able to experience what it meant to be a mother. She now knew what it felt like to protect and provide for her young. She would stand in harm's way if anyone threatened her baby. Her mother's instinct was impeccable. Her only wish was that someone could guarantee that Paxton would beat the odds and live a long, happy life. People always say that parents do not want to outlive their children and this, Susanne knew was true. Paxton was the light of Susanne's life and the star in her sky. He was so amazing already even with only being three months old. Susanne could not think of a more precious gift on mother's day than having her sweet precious baby boy at home with her to help celebrate. He was a miracle from God and she felt blessed to call him her own.

In celebration of Susanne's motherhood, Scott made her a special dinner. He made Susanne her favorite meal with some minor adjustments, of course, to fit her diet restrictions. He made chicken quesadillas on the grill without the queso. He made homemade guacamole without too much spice. They had Mountain Dew-tini's without the caffeine and best of all, dairy free and soy free brownies for dessert. What a special treat. Susanne got a beautiful rose with a touching card. It was a perfect end to a perfect evening. To top it all off, he also decided to take all of Paxton's overnight feedings so Susanne could get some rest. Yippee!

A Mother's Love

Author unknown

A Mother's Love is like an island
In life's ocean vast and wide,
A peaceful, quiet shelter
From the restless, rising tide ...

A Mother's Love is like a fortress
And we seek protection there
When the waves of tribulation
Seem to drown us in despair ...

A Mother's Love's a sanctuary
Where our souls can find sweet rest
From the struggle and the tension
Of life's fast and futile quest ...

A Mother's Love is like a tower
Rising far above the crowd,
And her smile is like the sunshine
Breaking through a threatening cloud ...

A Mother's Love is like a beacon
Burning bright with Faith and Prayer,
And through the changing scenes of life
We can find a Haven There ...

For A Mother's Love is fashioned
After God's enduring love,
It is endless and unfailing
Like the love of Him above ...

For God knew in His great wisdom
That He couldn't be Everywhere,
So He put His Little Children
In a Loving Mother's Care.

Happy Mother's Day!

Ma,

Happy Mother's Day to the most wonderful mother a child could ever dream of. I hope that one day I become half the mother that you are to me. You have continued to be such an inspiration and an incredible role model throughout the years. Your dedication to your children is nothing less than impressive. I depend on you so much for your words of encouragement and support. I go to you for advice that only you would know how to give. You have always known how to make light of a situation and make me laugh when all I wanted to do was cry. You have been the one true thing through all of my ups and downs. I appreciate all that you do and all that you are. I think it is so important for there to be people like you in this world. You have taught me to be the strong, independent woman I am today. Thank you for always being there. I love you a million times over. Have a wonderful day.

Love,

Susie
xoxo

Lift Your Head Up!

Today was Susanne's first Saturday off since starting back at work. She decided to take care of Paxton and his rigorous feeding schedule all day so that Scott could work on his dissertation. The deadline for completion was coming up soon so he needed to crank it out. Susanne and Paxton had some good quality time together and they thoroughly enjoyed each other's company. Paxton seemed more interested in the bottle today, which was a huge relief for Susanne. He also had another major breakthrough...he lifted his head for the first time. It was so cute to see him muster up the strength to finally do it. Susanne knew that all of that time she had spent with him doing tummy time paid off. Paxton's mama was so proud.

Aunt Leenie and Uncle Loonie stopped by and brought lunch. Scott took a much needed break and they all got to catch up on the past week's events. After lunch, Colleen, Chris, and Susanne took Paxton on a walk. It was a beautiful day and they did not want to miss out. They walked for about an hour strolling around one of the many lakes that are in the community. James even got to come along and he met some friends along the way.

After they returned back to the house, Moppy arrived. She came bearing gifts. She was so kind to wash some of the dirty laundry that had accumulated since the washing machine broke. She also stopped by the grocery store to pick up a few things for Susanne so she wouldn't have to worry about having to stress out Paxton with the change in routine. This would also allow Scott and Susanne some extra time to be together. Aunt Leenie and Uncle Loonie volunteered to put Paxton to bed before they left for the evening. They continued to impress Susanne with their comfort level around Paxton, in addition to their excellent care.

Susanne and Scott had a late dinner and they ended up watching a movie like they did most Saturday nights. Susanne continued to add to her long list of movies that she had fallen asleep to. No matter what she did or how hard she tried, she just could not stay awake to save her life. Susanne probably held a world record by now for seeing the most beginnings and endings of movies, but missing the meat of the story.

I can't think of a title.

Susanne was hoping to use today to recuperate from the last two days and get back on schedule. She wanted to really take the time to focus on working with Paxton on his oral feeding skills. She was frustrated because when she would sit down to work with Paxton on oral feedings, he was not interested at all. Susanne tried a variety of shapes and textures to see if he had a preference for one over the other. She had tried everything from a gloved finger, to the pacifier, to the Haberman bottle, to even straight up nursing. He was onto Susanne. Unfortunately, he hated it all. He was smart enough to anticipate what Susanne was going to do next and boy did he put up a good fight. Susanne was fearing that Paxton was backsliding. This was going to be a long road ahead for both of them.

Susanne was pleasantly surprised when the doorbell rang and it was the delivery man with an arrangement of flowers from some of Susanne's close friends at work. They were so kind to send their deepest sympathies for the loss of Maverick. Everyone knew what a special part of the family he was and it made it a little easier for Susanne to know that they were thinking of her during this difficult time. They, more than anyone, knew how hard it was to lose a loyal companion that was part of the family. Thanks guys.

Susanne was excited that Scott was coming home this evening. She had planned on having a meal that someone had already so kindly prepared for them so that there would not be any wasted time together. This made Susanne's world much easier because this was one last thing to worry about. Thank you Dunlap family. The meal was delicious...especially dessert. Yummy!

Chill Out Paxton

Paxton had an appointment with his pediatrician this morning. He had gained so much weight since the last time he was in. Today, he weighed 9 lb. 6 oz. This was impressive to the pediatrician. He was going to continue to be closely monitored just in case this uphill trend with his weight seizes. Paxton's doctor wanted to increase his feedings by a little bit. If he could tolerate this change, then they might be able to switch him to gavage feeding.

Susanne had to work again today. Every three weeks she would be working Wednesday and Thursday instead of Wednesday and Saturday so that she could have an entire weekend off. It was nice to come in back to back days because it made follow up with her clients from the day before much easier. Susanne got to see one of her favorite clients today along with one of her sweet dogs. The timing was perfect and Susanne was able to bring Paxton down from the nursery to meet her. It was perfect.

Paxton did well throughout the day. Moppy had noticed that Paxton seemed to do much better in a much colder environment than what his bedroom had been at home. It had been difficult to try to regulate the temperature in the Padilla household because there were three levels to cool with only one compressor. The biggest challenge was that Paxton's nursery was on the top level. Heat rises you know. In order for his room to be at a cooler temperature, the thermostat needed to be kept really low. This was not looking good from an electric bill standpoint. The sad thing was that it was only May. The heat of the summer has yet to even show it's face yet. The Padillas would just have to invest in a fan and hope that this would help some. If not, Susanne might have to resort to personally fanning Paxton and feeding him grapes as needed.

Susanne was finished with work around 8:30pm. This was a frustrating time to finish because Paxton was due for his next round of medications and his next NG feeding at 9:00pm. To add to the to do list, Susanne also needed to pump before leaving. Finally, they were packed and ready to go. After all was said and done, she did not even sit down to have dinner until closer to 11:30pm. By this point, was it even worth eating. Susanne's answer was yes...it was always worth eating.

Our Life Is Like A Country Song

Scott and Susanne were starting to feel like their life was like a country song. The washing machine doesn't work, their car broke down, their dog is dead, their baby is sick, and the husband is away. They didn't think they could handle anymore bad luck. They had enough stress on their plate to go around. Scott continued to repeat that it was situations like these that cause people to have a mental breakdown. They decided if they were going to go crazy, then at least they had each other.

Susanne had a rough time going to work today. When she arrived at the veterinary hospital, it made her very sad. She cried walking through the parking lot because the recent loss of Maverick was still so fresh in her head. She missed him so much.

The one thing that Susanne was excited about was that Paxton was going to be in the actual nursery for the first time since she started back. This was wonderful news for all. It made everything so much easier to have what we needed in one room and the best part was that there was space!!

Susanne usually pumped right before her shift so that she could stay on somewhat of a schedule. The frustrating thing about today was that she quickly realized that she had forgotten an important accessory that was needed in order for it to function properly. This was going to be a big problem.

The solution that Susanne came up with was to go get the missing piece when she went home on her break. She usually did not go home because of limited time, but she needed to let James out anyway. Aunt Leenie usually let James out on Wednesday evenings, but Susanne did not want her to have to worry about this the day before her big test, the Examination for Professional Practice in Psychology. She called Colleen to let her know not to worry about James, but she was too sneaky and she was already at the house. Susanne had thought she had plenty of time to let her know of the change in plans because she usually came in the evening, but she did not go to work today so she was there a lot earlier.

Susanne and Colleen got to catch up a little bit before Susanne had to go back to work. Susanne knew that there would be heavy traffic coming from the opposite direction, but she had no idea that it would be the same situation with the direction she was headed. It ended up taking her a little over an hour to get back to work instead of thirty minutes like she was used to. Luckily her first appointment slot after her break never filled up. It's funny how God works sometimes.

At the end of her shift, she was so excited to see Paxton. Moppy was pleased to inform Susanne that he did extremely well in his new room. Paxton loved the nursery...and so did Moppy.

Goodbye Maverick

Susanne was so thankful that Scott was home when they had to say goodbye to Maverick. It would have made a tragic situation even more difficult. They could not get over how many things reminded them of Maverick and how deeply he was already missed. Their house was so empty without him and they started to really feel the effects of the grieving process. All throughout the day, they waited to see his happy face come around the corner or be greeted by him at the door with a carefully selected toy in his mouth. They missed his wagging tail when he saw them, which let's be honest was really him wagging his whole backend because his tail would not go fast enough. Scott and Susanne had actually named this the "happy butt dance". It was sad to see an empty bowl, a lonely toy, a hollow collar, a vacant bed, and even his medications on the counter. When Susanne would cook she missed seeing him sit next to her lifting his paw for the off chance that she would share. Sitting on the couch was not the same because he usually sat there right along beside you... literally. This was definitely his trademark, ask anyyone who knew him well. The one thing that they missed the most was sleeping to the sound of his monsterous snore. It was too quiet in the house and they hated it. Maverick was not a dog, he was a person. He never did the typical dog-like behaviors or get into dog-like trouble. He was their first son and it killed them to let him go. It would have been too easy to be selfish in a situation like this. Susanne had seen it all too often. They did what was best for him and now he can rest in peace. Unfortunately knowing this did not make it any easier. There was nothing greater than that dog's love. It was unconditional and unselfish. It was so honest and dependable. No one could have ever had a more loving, loyal, companion then the Mav.

Best Dog Ever

Susanne brought Maverick to her clinic on Saturday for him to undergo his second round of chemotherapy. He had seemed to respond so well to the first round that hopes were high that this round would be just as successful. Maverick spent the night at the hospital on Saturday night so he could be monitored and cared for while Scott and Susanne spent the evening celebrating their 6 year anniversary. They had an amazing time together, reconnecting and remembering why they loved each other so much. Aunt Leah and Moppy stayed with Paxton overnight so that he would have extra love while his mom and dad were away from him for the first night since his leaving the hospital.
Scott and Susanne came home Sunday morning and planned to go and pick up Maverick in the evening after Aunt Leah and Moppy had left. In the meantime, they worked with Paxton on his bottle feeds and exercises. It was a really good day and Scott and Susanne were especially grateful for Aunt Leah coming to visit, bringing with her all of her priceless OT experience and advice to help The Bug.
When it was time to go and pick up Maverick, Scott and Susanne made sure to time the trip right so that they would not throw Paxton off of his feeding schedule, and also so that they would be able to pick up the food from The Cheescake Factory that one of Susanne's good friends in Georgia had ordered for them (Thanks Brandy!). The timing was perfect, the food was delicious, and it looked as though there would still be time in the night for a stop at Blockbuster for a movie.
Susanne ran in to pick up Mav while Scott and Paxton waited out in the car. It wasn't long before Scott's cell phone rang. It was Susanne telling him to come inside, that something was wrong with Maverick.
Susanne noticed right away that Mav's stomach was large and inflated. He was drooling and had rubbed his nose raw on the cage door. He looked very stressed out and uncomfortable. Susanne knew right away that this indicated what they call "bloat".
X-rays confirmed what Susanne had feared and the options from that point were limited to only one humane choice. Maverick would have to be put to sleep.
Scott and Susanne spent time with Mav on a blanket in the clinic loving on him and telling him that it was alright. Susanne called Aunt Julie to let her know what was going on. She was at the clinic within minutes.
Maverick was Scott's best friend for the past 11 years. They had been through a lot together in that time. He was a member of the Padilla family and Paxton's big brother. He had fought and beaten so many ailments and conditions and seemed to be doing it again with his recently diagnosed lymphoma. No one could have predicted that his stomach would have done what it did, when it did. It is certain, however, that if he could have fought this condition, he would have beaten it too.
Maverick was the best dog ever and will be incredibly missed.
We love you Maverick.

Please Don't Go Girl!

Susanne and Scott called home to check in on the bug sometime mid-morning. Moppy and Aunt Leah had mentioned that they had an uneventful night until right before they had called. They said that Paxton's NG tube had just come out when he had sneezed. This was definitely becoming a trend. It seemed like it was getting harder and harder to keep that thing in no matter what they did to prevent it. After getting off the phone, Susanne and Scott had to hurry up and get on the road so that they would make it home in time to replace Paxton's NG tube before his next feeding. Susanne couldn't wait. Sarcasm. Sarcasm.

Everyone was sad that Aunt Leah had to head home today. They all wished she could have stayed just a little bit longer. Hopefully next time she visited, Paxton would get to meet his cousins Parker and Cole.

Susanne and Scott planned on spending the rest of the day working on all of the new techniques that Aunt Leah had taught them about feeding Paxton. Later, they planned to go pick up the Mav from Susanne's veterinary hospital and maybe some dinner from somewhere. Who knows...maybe they would be able to squeeze in a movie before bedtime.

Pump and Dump, Baby!

Susanne had to work today. She was hoping that the time would fly by because she had a lot to look forward too. Scott and Susanne were going to spend their first night away from Paxton since he was home from the hospital. That, of course, was not the exciting part...it was actually a little bit scary. The exciting part was getting to actually go out for a nice dinner, stay at a nice resort, and escape from the real world for a bit. They both desperately needed an escape.

While Susanne was at work, Leah showed Scott some of the same techniques that she had shown Susanne the day prior in regards to Paxton's oral feedings. They had some positive responses from the little guy. They were all hoping that this was a step in the right direction.

Susanne got home later than she would have liked, but this was not a new development. She quickly got dressed and packed for the fun evening ahead. She had decided to leave Maverick at the veterinary hospital because he had just received his second dose of chemotherapy. She did not want to burden Moppy and Aunt Leah with the responsibility of all of the precautions that come along with those medications that were given, in addition to it being the first night they had to look after Paxton alone without his parents there.

Susanne and Scott ate at a restaurant called Mariachi's. This was a restaurant near and dear to their heart. They had eaten there many times for other special occasions. It was an easy decision especially since their favorite food was Mexican. Susanne thought that the dairy free and soy free diet would pose a major problem with what she would be allowed to eat. As most of you know, the staples of any good Mexican dish include tortillas, cheese, and sour cream. Susanne was impressed with the waiter's knowledge on her specific diet restrictions. He helped her to select a perfect choice for dinner. Susanne had decided early on that she was going to enjoy a drink or two with her meal. This would mean that she would have to pump and dump. Now this may sound easy to most, but with as much hard work as she had put in to keeping up with the pumping, she knew that it would be difficult to let go of any valuable milk.

Both of their meals were fantastic. Add a tasty margarita, outdoor seating, and a violinist to the picture and you have yourself a perfect night. They felt reconnected and they remembered why they had commited their lives to each other six years ago.

After dinner, they headed to the resort. They decided to exchange gifts before heading down to the bar. Scott got Susanne an Eee PC, which is a netbook computer. This was the perfect gift for Susanne. His gifts were always so practical. Susanne got Scott a selection of Mexican beers along with a little cookbook that had selected dishes that went well with each type. Susanne could not wait to give Scott the other gift. She had been keeping this one a secret for a few weeks now. She was about to pop! Finally, Scott opened the long-awaited present. It was a framed picture of Susanne looking at Paxton with an overlay of her holding his tiny little feet in one corner. Scott was so moved. He may or may not have even shed a tear or two. Some would say it was just dusty in the room. Paxton had his picture taken when Jill was down visiting. Susanne had decided to take his NG tube out to have these portraits done. She planned this so that she would have an extra set of hands the first time she would have to replace his NG tube. It worked out so well.

After taking a moment to awe over their gifts, they headed to the bar. They had a couple of drinks as they reminisced on days past. They had some good quality conversations. They were so rejuvenated after their wonderful evening together. It felt awesome to reconnect.

Throughout the night, Susanne had to pump, but quickly realized that Scott had to be the one to dump. It was too difficult for Susanne, silly as it seemed. Luckily, one of Susanne's friends had given her test strips to test her milk for its alcohol content. It was nice to have some sort of guideline to follow so that Susanne could guarantee that Paxton was not going to be accused of underage drinking.

Happy Six Year Anniversary!

Six years ago today, Susanne said "I Do" to her best friend and true companion. She could never think of a better decision than the one she made that day. Their kind of love was rare and amazingly strong. With the hand they had recently been dealt, they knew that they could get through anything as long as it was together. Their love only seemed to get deeper with time. Even though the years kept on passing, they still felt like newlyweds. They could not think of two other people that had been through as much as they had in the nine years that they had been together. No matter what, true love prevails.