Monday, May 31, 2010

We've Got Work To Do!


Susanne woke up and decided to make a big breakfast to start off the day. Susanne and Scott had some quality time alone while they ate their pancakes and bacon. Today, Scott's goal was to really focus on working on his dissertation. Susanne tried to stay out of his hair so he could focus. Susanne and Scott made sure to set aside some time for Paxton. They had some very productive playtime mixed in with a little therapy. They were amazed at how well he was reaching for objects on his play gym. He was even successful in grabbing onto one of his toys every so often. They even have the video footage to prove it. Way to go Paxton!!

In the afternoon, the whole family ran some errands. It was so much easier to do this when there was two of them. Right before they headed home, Susanne went to her work to pick up a cat that Scott had rescued from one of the families that he does therapy with. He had rescued this cat, Ashley, a couple of weeks ago. One of Susanne's co-workers was so kind to watch her while they were away in Ohio over the last week. Ashley was accepted into the adoption program through Susanne's work, but she had to wait until there was a spot available. Until that happened, Susanne was going to keep Ashley at the house. She was the sweetest little cat and she had quite the motor on her. This was the second cat that Scott had rescued from one of his clients. The first kitten found a loving home within weeks after being rescued. Hopefully, this would be the case for Ashley. Scott had also rescued a guinea pig from one of his clients at the end of last year. He was immediately accepted as part of the Padilla family and has been a joy to own ever since. Scott felt very fortunate to be married to a vet!

Sunday, May 30, 2010

Paxton Goes To The Pool!











Scott ended up doing all of the overnight feedings for Paxton to allow Susanne to catch up on some much needed sleep. As if only one night was enough.

Scott and Susanne were so excited that the pool had finally opened up for the summer. They were so excited in fact that they decided to take Paxton to the pool for the first time. Scott had picked out some super cute swimming trunks along with some sun protective shirts earlier in the day. He had also intended on purchasing some sunglasses for the little guy, but for some reason they did not make it to the checkout line. While waiting for Scott to return, Susanne lathered Paxton up with sunblock for babies. It was only after she was finished applying it, that she read that she should contact the doctor before using that product on babies less than six months. She felt horrible. Luckily, he did not have any problems. Paxton looked absolutely adorable in his swim gear. Susanne would have mentioned that Paxton also had to wear waterproof underpants, but she didn't want to embarass him. After being at the pool for less than thrity minutes, Scott had surprised Susanne by inviting Aunt Leenie and Uncle Loonie to join in on the festivities. Colleen and Chris brought everyone lunch and refreshing drinks. Paxton had a nice chair that he relaxed in while laying under the umbrella shade. He took a long nap so that he would be ready to play in the pool when the time came.

Finally, they all got into the pool and hung out in the shallow end so that there was no question whether they could touch the bottom or not. At first, Paxton hated the water and he cried in response to how cold it was. Shortly thereafter, he became accustomed to the temperature and thoroughly enjoyed himself. Susanne had brought a variety of squirt toys for Paxton to play with, but they quickly became abused by everyone else. As you might have guessed it, the toys went from innocent squirting sea creatures to weapons of mass destruction. There was full on war in the shallow end of the pool between Scott, Aunt Leenie, and Susanne. Luckily, Uncle Loonie protected Paxton from getting in the line of fire multiple times.

After a long dip in the pool, they all decided to dry off by soaking up some rays. It was shortly thereafter, that they heard the sweet sound of the ice cream truck. Colleen and Susanne ran up to the truck like little children. They were so excited about the sweet treats they were about to get. It was so depressing for Susanne not to be able to get REAL ice cream, but she found a fresh fruit bar that was just as tasty. At least that was what she told herself.

Once the evening approached, they headed back to the house in time for Paxton's next NG feeding. While Susanne pumped and got ready for the evening activities, Aunt Leenie and Uncle Loonie gave Paxton a bath. He was so exhausted from the day that after his bath he was ready for bed.

Scott had a little birthday celebration planned for Susanne since they were not at home this past Thursday. He had invited Colleen, Chris, and Moppy over for dinner. Scott prepared steak and shrimp on the grill along with a salad. Scott also served caffeine free Mountain Dew-tinis since they were such a hit the first go round on Mother's Day. They were delicious. Instead of birthday cake, Moppy made yummy brownies. Susanne made sure to make a wish before blowing out her candles. She made sure to make it a good one. Knowing how much Susanne loved ice cream, Scott and Moppy were successful in finding a fruit sorbet that was safe for her to eat. This should not be confused for sherbet, which was also provided. (Speaking of sherbet, there had been a long term discussion on the correct pronunciation of that word. Scott grew up saying "shur-bet" and Susanne grew up saying "shur-bert". Luckily, both pronunciations were found in the dictionary, but the correct way of saying it was just like it's spelled...sherbet.) Once their bellies were full, Susanne got to open her gifts. Colleen and Chris got her a mini-fridge for her bedroom. This was to help store the milk that she pumped overnight as well as to store Paxton's feedings so that she could eliminate having to go up and down the stairs multiple times. This was ingenious. What was even more ingenious than that was how they thought to look for one on a college campus as the students were heading home for the summer. Scott got Susanne a gift certificate to "Charming Charlie's", which is a boutique with endless amounts of women's accessories all separated by color. He also got her a matching pajama set for her and Paxton that said "Dreaming of Baby" and "Dreaming of Mommy" on the front. Paxton got his mommy decals for her car of stick figures that emulate their personal style. It was very cute. Moppy provided the edibles. What a fiesta!

Paxton woke up just in time to watch his mommy open her gifts. Before he went back to bed, Scott and Susanne were able to show everyone how well Paxton was smiling. He was quite the little performer. That was the most rewarding part of Susanne's day, to see her baby smiling. Paxton was a true gift from God and she felt so blessed.

Saturday, May 29, 2010

Car Trouble AGAIN!!!

Susanne was headed out the door to go to work when she ran into a slight problem...her car would not start. She attempted to start it multiple times before giving up. Her Eclipse had been in the shop twice already within the last month. How could it still not work properly? Susanne decided to just take Scott's car to work and they would have to figure the rest out later.

Susanne had a great day at work. It was pretty straightforward and she got to see one of her favorite clients. It was so nice to catch up with her, as well as share motherhood stories. By the end of the day, Susanne felt so tired. She was feeling the onset of exhaustion kick in from her busy week.

When she got home, Scott and Moppy ordered dinner from a new Mexican restaurant up the street called Margaritas. Scott and Susanne were pleasantly surprised with how great the food was, which says a lot since they are Mexican food connoisseurs. Susanne was finally getting a little more used to not having her good friends sour cream and cheese around. It was something she thought would have been near impossible a few months ago, especially since those had been two staples in the Padilla household since they had been together. During dinner, they watched a scary movie. This genre of movies was one of Scott's and Susanne's favorites. Susanne fell asleep, yet again, to the entertainment of the evening. What a party pooper!

Friday, May 28, 2010

Double Down



Scott made Susanne a deal last night before bedtime. He said that if Susanne did all of the overnight shifts for Paxton that he would drive the entire way home. Susanne took hime up on it since she was not fond of driving in the first place.

Scott and Susanne woke up to the wonderful smell of breakfast. Kelly had been slaving away in the kitchen all morning making omelets, bacon, and biscuits. Susanne's omelet had to be special ordered with no cheese. Even though it was missing the main component of an omelet, it was still very tasty. Kelly made sure to stuff it full of other delicious things.

It was hard saying goodbye to the Dreyer family. Even though they had been in Ohio for a week, their time together had been limited. No matter what, anytime with the Dreyer family was better than no time at all.

Scott and Susanne got on the road around lunch time. They had to make a few stops first before getting on the highway. It was really important to find a way to keep all of the milk cold that Susanne pumped over the last week. She did not want any of her hard work to go to waste. Whoever invented ice was a smart person. Once they were on the road, it was smooth sailing. Paxton did a great job of letting them know when he had a wet diaper, but other than that he slept for the most part. Scott and Susanne had to stop for food along the way because they had gone through all of the food that they had brought up to OH with them. Susanne was so thankful for modern technology. She was able to use her laptop in the car to look at the ingredients lists from different fast food places so she would know what was safe to eat. Most fast food restaurants had it nicely laid out which made it easy. Susanne was very limited with what see could eat, but Scott had unlimited options. Even though Scott had endless choices for food selection, he knew exactly what he wanted. He wanted to have the "Double Down" sandwich from KFC, which Susanne would describe as a heart attack waiting to happen. It was composed of slices of bacon and cheese smothered in some sort of sauce, which was then sandwiched between two fried chicken breasts. Scott loved it. He was in a state of artery clogging bliss. Susanne, on the otherhand, had a salad from Wendy's. Somehow this did not seem as exciting.

Paxton smiled a lot during the trip home. Anytime Susanne had to change his diaper or when they would get him out of his carseat for some fresh air, his face would just light up. He had done surprisingly well for such a long trip. It was only the last thrity minutes that Susanne had to jump in the backseat to sit with Paxton because he was fussy. Scott and Susanne decided that they would be too if they had to be confined for that length of time.

Finally, they arrived home. It felt so good to walk through the front door and even better knowing that in a short time they would be sound asleep in their Tempurpedic bed. They still felt that this was the best purchase they had ever made together.

They tried to get into bed a soon as possible because Susanne had a long day tomorrow at work.

Thursday, May 27, 2010

Happy Birthday Mommy!














Susanne's birthday started early because Paxton woke up around 3:00 am very unhappy. She had a hard time getting him comfortable so she had to wake up Scott to see if he could do any better. Apparently, sometimes Paxton just needed Daddy's touch. Both nights Paxton had to sleep in the hotel, he did not seem to adjust well. It was hard to figure out why. He did end up developing a rash on one of his ears after the first night he stayed there, but he only slept on things that were brought from home.

The morning came too soon for everyone. They all had to be back at the hospital for an eight o'clock appointment with the two geneticists that had been the head of Paxton's case so they could discuss a plan for after returning home. Susanne and Scott decided at the last minute to come back to the hotel after the appointment to pack up the car. If they had tried to do it beforehand, there was no way they would have made it on time, especially because it would be rush hour when they left.

Once they arrived at the hospital, Paxton wanted to make things interesting by having two dirty diapers right before his appointment. Susanne was really concerned because the second one had small ammounts of fresh blood present. She had not seen this since he was in the NICU long ago. When the doctors finally came in, Susanne mentioned this to them right away. They did not seem too concerned because he had recently had a barium swallow done and his NG tube was replaced yesterday. She was advised that if this persisted, then she should contact her pediatrician.

The geneticists got right down to business. They started off by stated that they strongly felt that Paxton had one underlying condition that had caused the other conditions. They could only think of two differentials which included Moebius syndrome or something specific to Paxton that had not been discovered yet. They tended to call the latter, Paxton syndrome. The good news was that Paxton had previously had extensive genetics testing done, which all had come up normal. Unfortunately, for a diagnosis such as Moebius syndrome, there was no specific test for that disease process. It was more of a wait and see approach. This new consideration as to what Paxton may have came as a surprise to Scott and Susanne. The geneticists were noticing evidence of neuromuscular issues that had not been noted before. Their suspicion for Moebius syndrome stemmed from the physical exam findings that they noted on the first day. They felt like he had a lack of facial expression, difficulty with lateral eye movement, motor delays due to upper body weakness, feeding and swallowing problems, drooling, high arched hard palate, and tapered fingers. Moebius syndrome was an extremely rare congenital neurological disorder caused by the underdevelopment of the facial nerves. They could definitely make a case for Paxton, but it wasn't something they could prove. Their recommendations at this point were to hit him hard with therapy. They wanted Paxton to not only receive treatment from an speech therapist, but also an occupational therapist and physical therapist as well. They felt that Paxton should be treated multiple times per week to give him the best chance of improving. They felt that Paxton would need a G tube placed instead of continuing on with the NG tube because of his lack of progress thus far with the oral feedings. This was a surgical procedure that would require anesthesia. Scott and Susanne would have to consult with Paxton's cardiologist to discuss setting this up before they proceeded forward. Next on the list of things that they suggested was a brain MRI. This was the last diagnostic test that was recommended because they just wanted to be completely thorough and they wanted to make sure that everything looked normal. Somewhere around six to seven months of age, Paxton would need his next heart surgery. The exact surgical procedure that was going to be done was still undetermined at this time. Finally, around one year of age Paxton would need his cleft palate repaired. This would hopefully help with his speech development and with oral feedings. Optimistically, each step would give Paxton a better chance of living a more normal, longer, healthier life.

Before heading out, Scott and Susanne had to set up a NG feeding for Paxton. Susanne realized that everything went a lot faster and smoother when there was an extra pair of hands. They got back to the hotel and started packing up their belongings. It took a lot longer than they had expected. By the time they were finished, it was an hour and a half past the check out time. The gentleman that was working at the front desk was very understanding and nice about the whole situation. It was still shocking how much stuff they had once it was all in the car. How do people do it when they have more than one child?

For Susanne's birthday, they decided to go to the Cinncinati Zoo. Even though Scott and Susanne had been to more zoos than they could count, this was Paxton's first time. Everyone was really excited. As Paxton's mommy and daddy suspected, his favorite animal was the monkey. Susanne and Paxton had already perfected the sound that they make and the monkeys were very impressed. Of course, every time Susanne made that noise, Paxton responded with a smile.

Somehow they were able to walk around the entire zoo within three hours. This was definitely impressive. Next stop...the Dreyer house. Scott and Susanne decided to stay with Kelly and her family for their last night in Ohio. They wanted to take advantage of the opportunity to catch up with everyone since at the beginning of the week they had to put all of their time and energy towards Paxton.

Once they got to the Dreyer's house, they had to leave shortly thereafter to meet Kelly's extended family for dinner at a local restaurant. They ate at the Montgomery Inn which was well known for their ribs. Susanne had called the night before to see what she could eat from their menu and luckily she could have the ribs. Dinner was very delicious and the company was even better. Everyone really made Susanne's birthday one to remember. She was showered with lots of gifts and cards. Since there was no "naked dessert" on the menu, Susanne had a bowl of strawberries with a candle presented to her while everyone sang "Happy Birthday". Best of all, she had her sweet baby boy in her arms. She couldn't ask for anything more.

When they got back to the house, Kelly's son, Will, wanted to desperately play Star Wars on the Wii with Scott. While they were preoccupied, Susanne put Paxton to bed. Once all of the kids were sleeping, the adults finished the night by watching "So You Think You Can Dance". Susanne fell asleep thirty minutes into the show, which was not surprising to anyone.

Wednesday, May 26, 2010

Another Busy Day






Scott and Susanne made it just by the skin of their teeth to get a wonderful dinner at El Pueblo's last night. Scott ended up getting a chimichanga and washed it down with a nice, refreshing margarita. As painful as it was, Susanne had to special order dairy and soy free fajitas, also known as "naked" fajitas. Even with no cheese and no sour cream, they were still delicious.

This morning, Scott and Susanne made it in time for the doctor's rounds. They all flooded into every corner of the room and each specialist spent time reviewing their assessments and any test results that they had. Susanne felt like she was a part of an episode of Grey's Anatomy. She was just waiting to see a familiar face. The best part of rounds was that they informed Scott and Susanne that Paxton was going to be discharged today. How exciting!

Paxton had another NG tube placed today. The nurses decided to try a different type of tape for his face. Scott and Susanne felt that it caused more irritation because, by the end of the day, there was a rash developing around the edges of the tape. They elected not to say anything and just fix it when they got back to the hotel.

Paxton had an occupational therapist evaluate him before he was discharged. She was actually an OT from the Regional Center for Newborn Intensive Care (RCNIC) and not from the floor that Paxton was staying on. The Padilla's friend, Kelly, made special arrangements for this specific OT to be able to be the one to evaluate Paxton. Kelly thought that Paxton would be better served by having someone who worked with all newborns evaluate him instead of an OT who worked with a variety of ages on the pediatric floor. Scott and Susanne loved this OT. She was very knowledgeable and informative. She made them realize that Paxton wouldn't focus on his toys in front of him if he could still see his parent's faces because he was so interested at staring at his mommy and daddy. It was amazing to see the difference when Scott moved out of his line of vision. The OT made a point to encourage Scott and Susanne to not to feel pressured to be in his face and talking to him at every play session. It was important for him to discover his environment some on his own as well. She gave them different approaches to try and other options for him to make his learning time as non stressful as possible. It was important for Scott and Susanne to also support his major joints and muscle groups during these sessions. This way he would feel supported and more comfortable.

Immediately following his OT session, the speech therapist stopped by to work with him one last time. Unfortunately, he was all tuckered out from the previous appointment that he did not have the energy to try to accept an oral feeding. They all had to say goodbye to the speech therapist since this was the last time Paxton would meet with her. She had been so incredible and supportive since day one. Paxton really seemed to like her a lot, as did his parents. If only Susanne could find this caliber of therapist where they lived, it would make everyone's life so much easier. The most important information they gathered from the speech therapist was that it was safe to keep trying to offer oral feedings. The studies proved that he was not aspirating his oral secretions or the milk that had been offered. She encouraged them to try feeding him in different positions so that he did not become position dependent when being fed. It was super important to give him positive experiences and have a very gentle approach. This was going to be easy because this was exactly what Susanne had been practicing all along.

The pulmonary team stopped by with the results from the sleep study. The good news was that there was no evidence of obstructive apnea throughout the entire night. This was a huge relief because of the concern for obstruction due to the retraction of his tongue secondary to the Pierre Robin Sequence. They did, however, notice very mild central apnea where the brain forgets to send the appropriate signals to the muscles that control breathing. In an ideal world, they would put Paxton on a trial of caffeine to see if that would improve the situation, but with his underlying heart condition, it would be too risky. They did mention that Paxton could have an apnea monitor if Scott and Susanne were interested. The cardiologist felt that it wasn't necessary and might be more of a source of frustration since the alarm tended to go off when it did not need to.

Scott and Susanne decided to take a nap while they were waiting for Paxton to be discharged. By the time everything was ready to go, Paxton was due for his next feeding. They decided not to throw him off of his schedule, so they had the nurse's set up his NG feeding before they headed out. Once they were ready to go, the nurse called for transport. It just so happened that the same lady that transported Paxton and Susanne yesterday was the one who showed up to take them to the car. They got to have one final joyride in the wheelchair. Scott had a wheelchair as well, but it was for all of the stuff that we accumulated while Paxton was in the hospital. Paxton's souvenir for his stay was a different animal wubbanub pacifier for each day he was there. The monkey will always be his ultimate favorite, but now they had additional buddies that Paxton could love on. The new additions included a red dog, a yellow duck, and a green frog. They were all super cute.

On the way back to the hotel, Scott and Susanne decided to pick up something quick for dinner. Scott spent the rest of the evening working on his dissertation. He was hoping to knock it out by the end of the week.

Tuesday, May 25, 2010

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!

Monday, May 24, 2010

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.

Sunday, May 23, 2010

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.

Saturday, May 22, 2010

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?

Friday, May 21, 2010

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.

Thursday, May 20, 2010

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.

Wednesday, May 19, 2010

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.

Tuesday, May 18, 2010

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.

Monday, May 17, 2010

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.

Sunday, May 16, 2010

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.