A Smile For The First Time!

Leah was so kind to help out with the overnight schedule. Susanne set up the feedings and Leah disconnected them. This always helped Susanne out so much. Every little bit counted. Even though Susanne caught up a little on some much needed sleep, they both decided that today needed to be deemed a PJ day. Of course, Paxton never had a problem with this.

When Susanne went downstairs this morning to get everything ready for the six o'clock feeding, she realized that Maverick had urinated on the floor in two different places. This was uncharacteristic of him, but was somewhat expected with the medications he was currently on. Susanne decided to monitor him closely throughout the morning and that was when she realized that he had blood in his urine. Susanne was going to have to take him with her to work to test his urine for an infection. Hopefully, it would be straightforward and respond well to an antibiotic. She felt horrible that Maverick would have to take another medication since he was on five other medications already. He was a walking pharmacy.

Something else that Susanne noticed was that everytime she would sit down and start pumping, the doorbell would ring and this morning was no exception. Go figure. Susanne had an appointment with the coordinator from Early Intervention, which is a service that provides support to children with developmental delays or disabilities in their natural environment. The coordinator wanted to get Paxton in the system to receive home care from an occupational therapist as soon as possible since the discharge nurse at the hospital forgot to set this in place when Paxton was sent home. This mistake had cost Paxton to lose a lot of precious time and decreased his learning window greatly. It takes time for a therapist to become available for care through this program with the average being about a month after the patient signs up. Susanne was promised that everything would be done to get Paxton the help that he needed as quickly as possible. This was much appreciated.

Today, Susanne was back on track. She was energized about learning new techniques to try with Paxton from her sister. Aunt Leah worked with Susanne throughout the day on different approaches for non-nutritive and nutritive sucking. She was very informative and Susanne got a lot out of the time they had together. Susanne felt like Paxton had received a more thorough evaluation and more thorough care from her sister than anyone that she had worked with thus far. Only good things could come from that.

Leah got to witness Paxton smile for the first time. Paxton decided that his mama was finally funny enough to humor her. It was during an intense performance of Waddly-acha that Paxton mustered up the energy to give her a little smile. He did so a couple of times following that, but he was not giving them up freely. Susanne had to work hard for that, but at least she had a witness that it really happened.

Scott was supposed to get home earlier that afternoon to start off his weekend. Unfortunately, God had other plans. Susanne received a phone call from him stating that he was stranded about fifteen minutes from the house. Scott had been driving Susanne's car since the day that Paxton was discharged from the hospital because it just didn't seem right to install a car seat in the back of a two door sports car with bucket seats. This car had always been reliable, but today it decided that it just did not want to cooperate. The car overheated and stopped working. Scott was able to troubleshoot, along with the assistance of Poppy, to get it working just long enough to get it home. This was just what they needed...something else to worry about.

Sounds like Miller Time!

Happy Birthday Gigi!

Don't worry...we won't tell everyone how old you are. We wish we could be there to help celebrate. We love you.

Team Paxton

Timm Time

With Susanne operating on a limited amount of sleep from last night, she quickly realized how this could negatively effect the rest of her day. She was exhausted and having a hard time functioning. She was struggling with keeping organized and focused. Little things would slip her mind. She was thankful to have Leah there to help her out.

Aunt Leah fell in love with Paxton right away just like Susanne had expected. Leah especially liked how much he loved to talk. She could not wait to be able to snuggle with him since he had to go right to bed last night when Susanne and Paxton arrived home.

This morning Paxton had an appointment with the cardiologist. Susanne was always thankful to have an extra pair of hands when she had to leave the house to go anywhere. "Timm time" was at an all time high because there were two Timm girls in the house vs. just the one. For those of you that don't know this, the more Timm girls that you put together, the longer it takes for them to get ready, to get out of the door, and get to their final destination. Susanne was convinced that this was genetic.

Finally, they made it to their appointment. Paxton had an initial blood pressure, SpO2 level, and an ECG done when he arrived, which was what they always did when he saw his cardiologist. Overall, things were looking stable. The SpO2 level was still running high, but the doctor felt that this would change over the next few months. Once it started to drop, Susanne would have to keep an extra eye out for any evidence that Paxton wasn't getting enough oxygen. This was scary to think about. Paxton's cardiologist did a complete physical exam. She thought that he looked good with the exception of his poor weight gain. Just like the pediatrician, she too did not like the trend that was revealing itself. Susanne requested that the cardiologist look into feeding teams that she had used for other patients of hers that were in a similar situation as Paxton. Susanne thought that this would be the best next step since, so far, no one was able or willing to help her tackle the monster known as oral feeding.

Susanne and Leah were able to run a couple of errands before heading home to set up Paxton's next NG feeding. They already had to feed him once in the car on the way to his appointment so they wanted to try to make it home to avoid having to do it again. It was also critical that Susanne utilized her time well with Leah. Leah had a lot of things to teach Susanne, including different techniques that she could try when practicing the oral feedings with Paxton. So far, she showed Susanne different positions to have him in when feeding him and different ways to use the special bottle that Paxton needed. Susanne felt well informed and better equipped for taking on the challenge of oral feedings than she had since Paxton had been home. Hopefully, they would break ground.

Things were going smoothly overall throughout the day with the exception of one little bump in the road. Susanne had been suffering from a blocked mammary duct since the night before. Susanne had first noted the problem when an area on her chest became very painful. The area that was tender was firm and warm to the touch. Susanne was thankful to have Leah around because she had been through this before and her advice was much needed. Susanne started to become concerned about getting mastitis once she noticed a change in her skin color, but after following through with Leah's recommendations, it appeared to clear up within the next 24 hours. Susanne got a kick out of the similarities between her and those of a milking cow. She felt like there were too many to count at this point. Moo!

Susanne and Leah spent a lot of time working on a summary of Paxton's history. This proved to be a bit more challenging than they had originally thought. Even though they stayed up really late until it was completed, they were sure this would benefit Paxton and his doctors greatly in the long run.

Goodnight all!

Aunt Leah's Coming

Susanne was informed before arriving at work today that Moppy and Paxton would be in the manager's office again instead of being able to use the nursery. Susanne thought that this was a temporary set up, but quickly realized that that was not the case. There had been some discussion on what they could do to rearrange her office to make it more comfortable and maximize space. Susanne raised the concern that she was offered the use of the nursery prior to Paxton's arrival and she would like to be able to utilize that space. She was also concerned that the manager had way more traffic going in and out of her office compared to the nursery, which would decrease the risk of Paxton getting sick. Also, the nursery had a refrigerator in it which was much needed for Paxton's medicines, milk, and enteral pump delivery set. After much discussion, Susanne made it known that she would be using the nursery in the weeks to follow.

Moppy felt like Paxton had a difficult day. He seemed a little more irritable than normal and he did not sleep well. The office space they were using was small which made it hard to move around in. Paxton was confined to his pack 'n' play due to the circumstances, which caused him to be restless. The room tended to get overheated, which made it all the more uncomfortable. It was a huge relief to know that this was the last time they would have to use that office. The most frustrating thing that Moppy discovered throughout the day was that when she went into the nursery to use the refrigerator, there was not anyone in there the entire day. This would have been nice to know.

Overall, Susanne had a good day at work. She had thus far enjoyed getting back into the swing of things. She loved being a veterinarian and getting to see some of her long-term clients.

Maverick had come to work with them this morning because he was on a medication that caused him to drink more and urinate more. Susanne hated the thought of him being at home all day with no one to let him out. He was always such a good boy and he easily adjusted to the new scenery. It didn't hurt either that one of his favorite things in the whole world was car rides.

Susanne got finished later than expected. This was frustrating because Susanne's oldest sister, Leah, had arrived into town this evening. Susanne got very angry with the amount of time that it took them to break everything down and to pack everything up. The time that Susanne had been finishing since starting back at work just so happened to be the time that she needed to pump again and set up Paxton for his next NG feeding. It had been averaging about an hour from the time that Susanne finished work to the time that they were on the road.

Finally, they were out of there. Susanne was so excited to see her sister. This would be the first time that Aunt Leah had met baby Paxton. Susanne was sure it would be love at first sight.

Frustration

Susanne and Scott had to get up extra early this morning to make sure they were out of the house on time. They were both going in different directions, but they needed to leave around the same time. Susanne had to get Paxton to an appointment in D.C. by 10:00am and Scott had an interview to be at by 9:00am. Once again, the biggest issue was rush hour traffic. It was starting to seem like there was no way around it.

Susanne got to Children's National Medical Center on time, however, it took a small miracle to transport everything into the building which included Paxton, his NG feeding, stroller, diaper bag, purse, and pump. Susanne continued to feel like a three ring circus wherever she went.

They finally made it to their appointment. All present and accounted for. Once they were in the exam room, a resident came in to get an initial history. It appeared to Susanne that they were really unsure why she was there. She tried to explain that they were there for a second opinion and were really interested in getting a feeding team involved to help Paxton progress. It had been somewhat of an uphill battle with Paxton's oral feedings since he was discharged from the hospital. Susanne had been desperately seeking assistance, but came up empty handed each time she contacted one facility or another. She was hoping that the doctors at Children's would see her need and get something set in place. Paxton was losing precious time. Finally, the craniofacial surgeon came in to evaluate Paxton. He, too, seemed clueless as to why Susanne was there. No one seemed to understand, with the exception of Susanne's pediatrician, the importance of having Paxton closely followed by a team of people that could work with him on his oral feedings. People either wanted to approach the feeding issue from a cardiac stand point or a Pierre Robin stand point, but no one was taking both into consideration. Each diagnosis posed its own set of problems, all of which needed special attention and a keen eye. Susanne felt like she was getting more help from her sister and family friend who were both pediatric occupational therapists. They both had felt that Paxton had been released from the hospital too early and that there was a lack of concern on the doctors' part about his poor success with oral feedings. This was definitely frustrating.

The craniofacial surgeon thought that Paxton may not need the jaw distraction surgery, but only time would tell. He mentioned that his team of people would not need to evaluate Paxton again until he was seven months old. The cleft repair would soon follow between nine to twelve months of age. The doctor thought that Paxton's cleft was minor compared to the ones that he had evaluated before and that he should have no problems with advancing in his ability to handle oral feedings. The thing that he kept forgetting was the fact that the cardiac issue was the bigger challenge with successful feeding.

Once again, Susanne had to pump in the car. This time it was in the parking garage of the hospital. This was getting pretty ridiculous. Before heading out, Susanne set up Paxton's NG feeding. It was going smoothly until Susanne looked back at Paxton in the mirror and saw that he had pulled out his NG tube halfway. Susanne had to pull over to put it back in place. He was getting better and better at figuring out ways to remove his NG tube. What a stinker!

They finally got home two hours later. They were excited because Auntie Ann was coming to visit. She came bearing gifts. Susanne was given a beautiful necklace and Paxton was given a super cute bear named Carmel and a book that Susanne had been wanting to get him for a while. They had a fun afternoon full of playtime and laughter. Time seemed to fly by and then Ann had to go. This made Paxton very sad. He hoped that she would be able to come over again sometime.

Susanne waited around for Moppy to arrive. They prepared for their day tomorrow and got ready for bed hoping to get some sleep.

Smile

Susanne has learned that even when she tried to plan ahead by giving herself extra time to get ready to be somewhere it did not always work out. This morning before Susanne headed out for an appointment, Maverick had an accident on the floor. This was to be somewhat expected since he was recently started on a medication that caused him to drink more and urinate more. Susanne had thought that it was enough to let him out every three hours when she got up to feed Paxton and pump, but obviously this was not the case. Poor guy. In addition, Paxton decided that he did not like his breakfast so he vomited all over his carseat as they were walking out of the door. Susanne was also in a state of panic because she could not find the car keys that Scott had used over the weekend. Luckily, when she called him he picked up on the first ring and knew exactly where they were. Lastly, it was pouring rain outside. This was Susanne's first outing with Paxton when the weather had been like this. It was challenging trying to keep him dry before getting him situated in the car.

They finally got it together and headed out for Susanne's dental appointment. Paxton was very well behaved and sat quietly the whole time. Paxton was quite the cheerleader. He wore a shirt that said "SMILE" to support his mama while she got her teeth cleaned and even drooled a little bit so that Susanne didn't feel so bad. Thankfully, Susanne's teeth looked great. No cavities! Whooo hooo!

Once Susanne and Paxton were home they got right back into their daily routine. They were very excited because daddy was coming back home tonight.

Smorgasbord

Paxton was super excited because Aunt Leenie and Uncle Loonie were coming over this afternoon to visit with him. He had missed them both oh so much.

The Neumanns arrived just as Paxton was waking up. As he stretched out his little arms and opened his big, beautiful, brown, eyes, he realized that they were finally here. Aunt Leenie and Uncle Loonie came bearing gifts. They had made "Team Paxton" t-shirts for everyone to wear in celebration of Paxton's arrival home. Paxton got a onesie with a picture of him on it that said "Homecoming 2010" and the best part was the back, which read "Team Me". Paxton's parents were very touched that they had gone to the extreme to make something so special. This would be such a great way to remind them always of that wonderful day that their beautiful boy could finally come home. Everyone rocked it out and looked awesome in their new shirts.

Aunt Leenie and Uncle Loonie continued to go above and beyond like they so commonly did. They ended up cooking dinner for the Padilla family and refused to accept any help. They prepared scrumptuous bacon cheeseburgers, salad, and chips for their main course. This was followed by dessert, which included a variety of berries over top of a mini shortcake of sorts. Everything was dairy and soy free...everything but the cheese of course.

Scott had to head back to Pennsylvania shortly after dinner. Colleen and Chris decided to stay to help Susanne give Paxton a bath. They were very helpful and Paxton enjoyed all of the attention.

The Neumanns left after Paxton was snug as a bug in a rug. He would rest well tonight. Goodnight bug!

Boys' Day Out

Susanne had to go to work this morning for the second time this week. This was actually Scott's first time watching Paxton all by himself. Paxton and Scott were excited to have some good quality guy time.

Scott had a dentist appointment earlier in the morning that Paxton got to tag along for. Paxton was very patient and sat still during the entire time Scott was having his teeth cleaned.

Scott did a phenomenal job working with Paxton and his new bottle. Scott was able to get Paxton to take 10ml by mouth, which was impressive compared to the 5ml that he took with the other bottle. Hopefully this was a sign that he was headed in the right direction.

Susanne had a great day at work. She was able to see a lot of her favorite clients and, of course, their pets. There was nothing that made Susanne smile more than to get wet, slobbery, kisses from her patients. Thanks Boomer and Bailey! Thanks Hazel!

Susanne got home just in time to try to watch the movie that they rented for a second time. It was a success and this made Scott very happy. They will see if she can make it through Saturday Night Live. Good luck!

Love Bug

Susanne loved waking up next to her husband. It was such a rarity these days that she made sure to savor every moment she had with him. She decided to start off the day by making him breakfast in bed. She could not make up her mind on what she wanted to prepare for him so she decided to cook a bunch of yummy things. In the end, they had eggs, bacon, toast, pancakes, and fruit. They loved eating breakfast in bed.

Scott and Susanne got a lot accomplished in the morning. This allowed for the rest of the day to be spent loving on the bug. It was such a beautiful day outside that they went for a walk around the lake. Paxton loved the sunshine just like his momma. They decided to take James with them so that he could get some fresh air. He always made the walks entertaining.

Since Maverick was unable to go on the walk due to his serious heart condition, they elected to take him with them to run a few errands. Maverick loved car rides. He enjoyed Paxton's company in the back seat. He even rested his head on the side of Paxton's car seat to let him know how much he loved being next to him. Maverick had decided that they were the best of friends.

Scott and Susanne picked out a movie to watch in the evening. Scott predicted that Susanne would be fast asleep within 30 minutes after starting the movie. He was so right.

Superwoman

Susanne could not believe it. She had been so tired that she fell asleep in her work clothes after she ate dinner last night. She did not wake up until 2:30am. Unfortunately for Paxton, this meant that he missed a meal. Susanne felt horribly, however, she was relieved that she woke up just in time for the next feeding. She prepared everything for the 3:00am feeding and went to set it up when she realized something was a little off. Susanne thought that the end of Paxton's NG tube looked different, but she could not figure out why. She originally thought that Paxton had pulled the entire end of the NG tube off or maybe a cat chewed it off. After a little investigation, she realized she was actually looking at the end that was supposed to be in his stomach. The silly little guy had pulled out his NG tube despite wearing mittens. What a stinker! Susanne had to try to get her bearings because she was still half asleep. She hated that she had to replace his NG tube especially since this would be the third time in the last week. On a positive note, practice makes perfect. Shortly after starting the NG feeding, Paxton had explosive diarrhea. It was so explosive that he managed to soil not only the outfit he was wearing, but also the blankets he was using to keep him warm. This meant more laundry for Susanne. Yay! By the time all was said and done, Susanne finally got to pump around 4:00am. She was in for a long day, especially since Paxton's first appointment was at 8:00am.

The time that Susanne needed to get up came too quickly. She felt like a walking zombie and was not sure how she was going to make it through the day. Luckily, Susanne managed to make it to the appointment on time, which was a small miracle to say the least. Even though Paxton weighed 8 lbs 6 oz., Paxton's pediatrician was concerned that he was not gaining weight like she had wanted him too. Susanne brought up her concerns about the recent diarrhea. Paxton was so kind as to have two dirty diapers during this appointment so that the doctor could see first-hand what his momma was talking about. She did not seem overly concerned with the color or consistency at the moment. Susanne was instructed to keep a close eye on it and if there was no significant improvement over the next week, then she would come up with a plan of action. Paxton ended up getting a Hepatitis B vaccine at the end of the appointment. The pediatrician decided to hold off on the Rotavirus vaccine because one of the side effects was diarrhea. Susanne agreed that we should not add fuel to the fire.

Susanne got home just in time to leave again for the next appointment, which was actually for Maverick. Susanne had been informed of a clinical trial for dogs with lymphoma. Susanne thought that he would be a great candidate for this, especially since he was just recently diagnosed and he's such an awesome dog. Susanne left the house at 11:30am to make sure that she would make the 1:30pm appointment that was scheduled at a specialty hospital in D.C.. To no one's surprise, it took the entire two hours to reach their destination. Susanne laughed when she was driving through the city because she saw an advertisement that said, "Real Men Wear Gowns." Once Susanne arrived in the parking garage, she had the challenge of trying to push Paxton in the stroller at the same time as walking Maverick. It went better than expected, but only because it was Maverick and not James. Susanne entered the building and quickly discovered a problem. There were two flights of stairs to go up in order to get to the main lobby with no elevator in sight. Of course, with Susanne's superwoman mentality she tried to lift the stroller up one stair at a time, but realized this was not a safe approach. Susanne called the front desk for assistance and was told to walk around the building to the front side where there was a handicap ramp. Susanne had to go back out to the garage, up a street, around the building, and up a sidewalk to finally reach the ramp. Susanne felt like she was in line for a roller coaster going back and forth and up and down just to reach the front door. This was more of a work out than what she had signed up for.

The appointment with the oncologist took about three hours. Unfortunately there was a waiting list for the research study. It would take at least two weeks for them to even know if Maverick would be next in line. Susanne thought that this amount of time would be too long to wait if she wanted to give Maverick the best chance of going into remission. After a long discussion with the oncologist, they all agreed that it would be best for Susanne to go ahead and start chemotherapy. The oncologist was kind enough to help Susanne put together a multi-drug protocol which would take up to 18 weeks to complete. The rest would be up to Maverick.

Susanne was presented with a little bit of a dilemma since the appointment took so long. It was way past time for her to pump so she resolved the issue by pumping in her car in the parking lot. Yes folks, you heard it right...Susanne pumped in public. Desperate times call for desperate measures. Luckily, she was parked in the far corner of the parking lot and no one was around. Susanne was glad that she had made the decision to pump there because it ended up taking her two hours to get home. There's nothing like D.C. traffic during rush hour.

Paxton was such a trooper today. He received the majority of his NG feedings in the car. Thankfully, Susanne had remembered to pack enough milk for the entire day. Unfortunately, Paxton's reflux seemed to bother him more today than it had in the past. Susanne thought that a big majority of this was due to the angle of the car seat and the fact that the buckle rested right against his stomach. This was poor planning on the manufacturer's part per Susanne.

The best part of the whole day was that Scott came home a night early and surprised Susanne. It was the little things likie this that made Susanne smile.

Initiation

Susanne felt so awesome after being able to sleep for four hours in a row. Just that little extra bit made all of the difference. Susanne was excited to get back to work because she loves what she does, however, she was very anxious about leaving her baby for the first time. She knew that Moppy would do a great job with him, but Susanne still hated the thought of being separated from him. Susanne started getting ready at 7:30 am. She wanted to make sure that she had plenty of time to get to work. It ended up taking her a full three hours to get everything packed and ready to go in addition to the pumping, feeding Paxton, getting herself ready, taking care of the animals...etc.

Susanne and Moppy arrived at Susanne's work an hour before her shift started. This was supposed to be enough time to set up everything and still leave enough time for Susanne to pump right before her shift. After they assembled the pack and play, one of Susanne's co-workers arrived with her child to drop him off for the day. Susanne could tell by the woman's face that she was shocked to see them there. Susanne was aware that her son would be sharing the nursery with Paxton during the daytime, but obviously she did not. She voiced her concerns about the children's schedules conflicting and that her son may harm Paxton accidentally since he was much older. It proved to be too much stress for Susanne to try to figure out a solution at that moment so they moved everything into one of the manager's offices to avoid conflict. She was already stressed enough with it being her first day back at work and her leaving her child for the first time. If that wasn't enough to worry about, he was also a child that had special needs. This was not what they had envisioned, but they made it work. It was definitely a tight fit to get everything in the office. Moppy managed to make do with the situation even though she was squished in a corner with an office chair all day. She's so awesome.

Susanne had to work really hard at trying to switch mommy mode off and turning her veterinarian brain on. After the first few hours, she felt right at home. It was like riding a bike. She got a warm welcome back by getting peed on by one patient and getting sprayed with anal glands by another patient. Switching her lab coat twice within the first day back was quite the initiation.

Susanne got done later than expected because she ended up hospitalizing her last patient. She ended up getting on the road around 9:30 pm. This of course meant that she had to hook Paxton up to his NG feeding for the ride home. Due to the minimal space available in the nursery, Susanne decided to pack everything up and take it all home until next week. Moppy and Susanne looked like they were moving an entire house with the amount of stuff they had to carry. It does wonders for their biceps.

Susanne and Moppy parted ways. Susanne got home a little after 10:00 pm. Paxton appeared to be wide awake so Susanne took advantage of this opportunity to spend some quality time with the little guy. Susanne laid Paxton on her bed while she stared at him and talked to him sweetly. Out of nowhere, Paxton spit up all over the bed. This, in turn, meant that Susanne had to strip her bed of all of the sheets and covers and wash everything. He made such a mess of himself that Susanne decided to bathe him before he went to bed. He really seemed like he was enjoying baths more and more. After taking care of the laundry, the pets, and Paxton, Susanne finally got to sit down and have some dinner. There was nothing more appealing to Susanne than eating dinner in her bed watching some trash TV after a long, hard day.

So Many Appointments!

Susanne was excited that Paxton was finally going to have his first feeding evaluation with a speech therapist since being discharged from the hospital. Susanne had attempted to schedule this appointment with a number of other speech therapist, but they either did not have the experience with newborns or with his congenital conditions. After running into a lot of dead ends, Susanne decided to just schedule this appointment with the team of people that had evaluated him in the hospital. The unfortunate side to all of this was definitely the amount of time that it would take for Susanne and Paxton to get to the hospital. The appointment time that was available just so happened to coincide perfectly with rush hour traffic. It took Susanne an hour and a half to get to the hospital just to be seen within a 45 minute time frame to then have to turn around and go back home. Paxton, however, was well worth it all.

The appointment went well. The speech therapist was able to observe Paxton's resistance to the Mead-Johnson bottle. She was impressed with his interest in the pacifier, particularly his Wubba Nub, but this would not give him any nutrition. Susanne mentioned her interest in trying a different bottle such as the Haberman bottle. This suggestion came from Susanne's oldest sister and a close family friend, both of whom are occupational therapists. The speech therapist was willing to try the different bottle to see if it would make any difference. Thankfully, it did. Paxton was way more interested in the Haberman bottle than the other option. Susanne liked it much better too. The nipple was shorter, wider, and softer. It appeared to resemble the pacifier and human anatomy much more than the other one. Susanne's goals for the next few weeks was to continue to work with Paxton and the new bottle a few times a day. Hopefully, he would improve with the quantity that he was taking by the follow up appointment in two weeks.

Later that afternoon, Susanne had an appointment with the Social Security office to see if Paxton would qualify for any supplemental income. Susanne would not have even known that this kind of assistance existed if it were not for the recommendation and information provided by the social worker from the hospital. Susanne had spent at least three hours the night before filling out the application online. They asked a lot of detailed questions including wanting to know the name and address of every doctor that saw Paxton during his hospital stay. After looking through all of the insurance claims, the total came to 30 doctors. YIKES! Susanne also spent some time writing an essay about the medical conditions that Paxton had been diagnosed with. She made sure to emphasize the severity of each individual issue and the problems they may cause down the road. Susanne had decided to sacrifice some sleep last night to hopefully help decrease the time that would be spent at the Social Security office. Susanne and Paxton arrived on time for their appointment. They were almost taken back immediately which was a relief. The frustrating part was that within two minutes of being there, Susanne was told that Paxton would not qualify because her income was too high. In order to benefit from this program, the combined income per household cannot exceed $30,000 per year. One's chances of receiving supplemental income does increase with the more children that you have. The lesson learned here was that they do not look at each individual case to assess where the true need may be, but they support the people who are unemployed with lots of children. Seriously?

Moppy came over in the evening to help out with the overnight shift to hopefully allow Susanne to catch up on some much needed sleep. Moppy thought that this would be a good idea since tomorrow was Susanne's first day at work. Good idea, Moppy!

Beep! Beep!

Susanne and Paxton had an appointment earlier today. The timing was such that Paxton had to receive his NG feeding in the car. Susanne would like to think that she was becoming faster and more efficient with the set up and break down of this whole process. After the appointment, Susanne knew that Paxton had left her a present in his diaper so she decided to change him before heading home. This was the first diaper change that she had done in the car. As she had predicted, there was quite a mess to deal with. Susanne thought she was finally done after going through three diapers, but Paxton surprised her by peeing straight up in the air as she was about to close him up. He had to get changed for the fourth time in less than two minutes. Paxton may have broken a record with this one.

Susanne got another call today from someone in the billing department at the hospital. It was the same lady that was not so nice the other day. She called to let Susanne know that United Healthcare had continued to deny their claim for Paxton's hospital stay. The insurance company said that they were still in the system as a secondary insurance. Susanne was getting a little angry at this whole situation because she had just called less than two weeks ago to clear up this problem. The lady from the hospital decided to call someone at the insurance company while Susanne was still on the phone to see if they could get to the bottom of this. After speaking with two different people working in India and then finally someone that was based out of New York, they were told that they would have to speak to a supervisor. The crazy thing about this situation was that two of the three people found documentation of the conversation that Susanne had with a customer service representative earlier this month. There was a notation about United Healthcare being the primary insurance, but the person at that time did not change it permanently in the system. Instead of one those people being able to make the change, they were told that they would have to speak with a supervisor. After forty minutes of Susanne's time was wasted, the lady from the hospital said she was going to report this to her supervisor and have them handle this nonsense. Let's hope someone figures it out. Don't they understand how precious Susanne's time is?

The rest of the afternoon went rather well. Susanne snuck in some much needed snuggle time with the bug.

Still working on that smile.

Stubborn

Unfortunately, Susanne had an eventful evening last night. Everything was going well until she started Paxton's nine o'clock feeding. At first, things appeared to be going smoothly. Susanne prepared his medications and his food just like always. She listened for tube placement, which appeared to be in the correct position. Susanne gave his first medication, which went through the tube easily. It was when she went to give the second medication that there was a problem. It would not go in. She tried listening for adequate tube placement again, but the air would not advance forward. She tried to flush the tube with some water, but the same problem occurred. She tried to visualize the tube in the back of Paxton's throat to see if there was a visible kink or if the tube was coiled on itself. She found nothing. This left her with only one thing to do...pull the tube out completely. She was not thrilled with this idea, especially since it took two people to do it the other day. She decided to call Scott for moral support. He sat with her on the phone the entire time. Susanne pulled out the NG tube and quickly found the problem. The aspirin that was supposed to be dissolved in the water it was mixed with decided to clump together and form an obstruction in the tube. Susanne had to work pretty hard at dislodging it from the tube. She forced air into the tube, then water, then air, and then water. It finally paid off after five minutes of hardwork and determination. The obstruction was removed and they were back in business. Now came the hard part. Susanne had to replace the tube through Paxton's nose. She was apprehensive about the whole thing because he cried so much the last time. She HATED seeing her baby upset, especially when she was the one causing him to be that way. Luckily, it went better than expected. He surpisingly sat very still for the whole thing. Susanne checked for tube placement. She was so happy that it was in the right place and functional once again. Let's hope this does not happen again.

The rest of the day went something like this...
prepare for NG feeding, change diaper, check tube placement, give medication, set up NG feeding, pump, disconnect NG feeding, clean up everything used during pumping and NG feeding, rest, and repeat.

Let's hope everyone has got Susanne's schedule down by now.

Farewell Aunt Jill

Susanne was falling down on the job. This was the second night that Susanne had slept through her alarm since Jill had been there. This would not have been such a big deal if Jill was not having to set her alarm for an estimated time to disconnect Paxton's NG feeding. Susanne was in complete and utter shock to find out that she unconsciously turned off her alarm without remembering ever hearing it in the first place. This was extremely uncharacteristic for her especially since she was usually such a light sleeper. The plan from there on out was for her to put her alarm across the room so she would have to get up to turn it off.

Susanne drove Jill to the metro later this morning. She was sad to see her go. Susanne was so thankful for all of the help that Jill had provided over the last week. She could not have survived without her. Paxton was going to miss her too. Hopefully, it would not be too long before she was able to visit again.

Susanne spent the rest of the afternoon trying to catch up on the things on her to do list. She also started to organize a few things for next week. Paxton has four appointments, Maverick has one appointment, and Susanne has to start back at work.

Paxton decided that today was the day for rest and recuperation. He slept pretty much the whole day and he had no episodes of vomiting. Susanne tried to maximize the small amount of awake time that he had. Among other things, she read him the book, "Horton Hears A Who". He seemed to enjoy it very much especially looking at the pictures of Horton. Oh, Horton!

Goodnight, sleep tight everyone.

Rest and Recuperate

Jill decided to stay an extra day because of the crazy day they had yesterday and the fact that Scott was not coming home this weekend. Susanne and Jill were hoping that they would be able to nap during the day and recuperate. Jill made Susanne breakfast in bed which was so thoughtful. Susanne felt her inner princess come out. Paxton did end up regurgitating some of his food after one of his NG feedings during the day. They were watching him closely for any other sign that he was not feeling well to determine if they needed to take him to the hospital. The rest of the afternoon was uneventful, but somehow they still did not find time to take a nap or relax. Time was flying by. Anytime they would look at the clock it was either time to start a feeding, disconnect a feeding, change a diaper, or Susanne would need to pump. The day got away from them and they ended up eating dinner at 11:00 pm like the night before.

Moppy came over for the 9:00 pm feeding to get more practice. Luckily, Paxton was bright eyed and bushy tailed at that time so she was able to spend some quality time with him. Everything was going well until it was time to put him down for the night. He ended up regurgitating again after his feeding. It did not seem as though he was nauseated like the night before so Susanne decided to just monitor him closely through the night.

Susanne and Jill were praying for a peaceful night's sleep...that is between the pumping and feeding.

And Real Men Like Strawberry Shortcake

Susanne and Jill got up early this morning to make sure that they could be ready in time to get to Paxton's appointments for the day. About two hours before his feeding therapy session, Susanne got a phone call stating that it had been cancelled due to someone double booking the appointment. This allowed Susanne and Jill to work with Paxton on some of his developmental skills. He appeared to be improving with his tracking and head control.

Susanne decided to trim Paxton's nails before his next appointment with his pediatrician. Without even getting passed the first nail, Susanne managed to include some of Paxton's skin in with the nail itself. Of course it bled and of course Susanne felt like the worst mom ever especially since she was a professional at clipping dog and cat nails. Unfortunately for Paxton, the only band-aids in the house were Strawberry Shortcake band-aids. Paxton had to suck it up and take what we had. He was such a strong boy that he did not even cry through that whole ordeal.

Susanne and Jill had no idea that it would take such a long time to pack the car. It took them three trips to get everything packed and ready to go. They felt like they were going on vacation for a week. They could not even imagine what it would be like if Susanne had more kids. She would definitely need to upgrade the size of her car in that case.

Susanne did not know until close to the end of Paxton's pediatrician appointment that he would be receiving vaccines and getting some blood taken that day. Susanne decided to break up the vaccines over the next two appointments to try and avoid overloading his system. He was so brave throughout everything. He only cried for a second.

Before heading to the next destination, Paxton had to be started on his NG feeding. Luckily, things went smoothly and they remembered everything that was needed. Susanne ended up having to pump in the car, which was a challenge. Thankfully Jill drove so Susanne wouldn't be putting other people's lives in danger. Thanks to Jill they remembered a cooler to store Susanne's milk in until they returned home. This would have been such a disappointment if Susanne went to all of the trouble to pump, but had to throw away the milk.

After a full afternoon of running errands, Susanne and Jill finally made it home.
Today Paxton needed to have his NG tube replaced and switched to the opposite nostril. Susanne was sad that she had to do this, especially since he had been poked and proded all day. Paxton was very upset through the whole process. This made it that much more difficult for Susanne because she HATED seeing her baby upset, especially when she was the one making him that way. All in all, the NG tube placement was a success. He survived and so did Susanne. Susanne was thankful that this only had to be done once a month...that is unless someone pulls it out.

The evening went downhill from there. Paxton became really cranky and irritable later that night. He was sweating a lot and he seemed uncomfortable. Nothing would calm him down. Luckily, he did not have a fever, but he appeared very stressed which was not good for his heart condition. This was torture for Susanne, especially since she had never seen him that way. The doctor had told Susanne to look for these clinical signs because they could be a result of the vaccinations that were given earlier that day. She was instructed to give Paxton a small dose of Tylenol if these signs appeared. Moppy saved the day by getting Susanne the Tylenol for infants. Susanne thought that once the medication was on board he would be back on track. Unfortunately, that was not the case. About an hour after giving Paxton the medication, he vomited. Susanne was worried because he had not done this since the first day he was home. She continued to cuddle with him to try to comfort him the best way she knew how. It seemed to work beautiffully and they both fell asleep on the couch. A short time later, Susanne was abruptly awakened by the sound of Paxton retching. He ended up dry-heaving, gagging, coughing, and vomiting on and off for almost another hour. During this time, Susanne decided to call her pediatrician's office to get some advice from the nurse that was on call. The nurse contacted the doctor to make sure they did not need to go to the emergency room. Susanne was instructed to hold off on one entire NG feeding for the moment. At the next feeding time, they wanted Susanne to pull the NG tube out a little bit before giving him any food. During the feeding they wanted her to monitor his heart rate and respiration rate closely. If he continued to vomit, then they would need to go to the hospital immediately. Luckily, Paxton did well throughout the rest of the night. Susanne and Jill think that it was because he slept in the middle of a love sandwich. When they finally went to bed around 4:00 am, they decided to put his sleep positioner between them on Susanne's bed so they could be ready to suction his nose and mouth if he vomited. This was so important because it would help prevent him from aspirating. They both felt more comfortable with him being right next to them instead of in the other room especially since Susanne had been sleeping through her alarm recently.

Paxton was such a trooper through it all.

Real Men Wear Nightgowns...

Susanne and Jill decided to make today a PJ day. They vowed not to get out of their PJ's all day long. They were hoping to find some time to relax and possibly take a cat nap or two because they were so exhausted from the overnight schedule. This did not end up fitting into their day as they had planned. Jill quickly learned that no time was truly your own. She too became a slave to the scedule. Paxton decided to show off a little bit by proving to Jill how good he was at making a dirty diaper. He was a true master of that art. He was so good, in fact, that the girls managed to do about three loads of laundry within a few hours of starting their day. Paxton had made such a mess of himself that they also deemed it necessary that Paxton got a bath. They just weren't sure that the wipes had cleaned him up enough to be safe to hold. Paxton was beginning to enjoy his bathtime more and more, which was a blessing. He liked being treated like a king. Now if only he could eat grapes...

Jill and Susanne worked a lot with Paxton on some of his developmental skills. He laid on his play gym for a while tracking different toys with his eyes and working on strengthening his head and neck muscles. He was becoming a pro at following people's faces and toys.

The weather was so nice that Susanne and Jill decided to take Paxton on a walk in the sun. They decided it was okay to break the rules about being in their PJ's all day for the sake of a little exercise and some fresh air.

Later in the evening, Moppy came over to get more practice with setting up and disconnecting Paxton's NG feedings. She was doing so well that she even started administering some of Paxton's medications through his NG tube. Susanne was sure that Moppy would be a seasoned pro by the end of the week.

Jill and Susanne had managed to change about fifteen diapers throughout the course of the day. They realized that with as many dirty diapers as Paxton produced they needed to find outfits that were easier to work with when trying to change him. The soulution for this problem was that real men wear nightgowns. Fellas, don't hate.

Aunt Jill Is Coming

Today was an exciting day for both Paxton and Susanne. They could not wait until Aunt Jill arrived. Jill was pretty excited too. She had been anxiously awaiting the day that she could finally meet the little guy. Jill was a very important part of the family. She was like a fourth sister to Susanne. They had known each other for almost fifteen years, and during five of those years they were roommates. They had been through so many ups and downs together. They were there for each other through thick and thin. This was for sure going to be a special moment in their lives. Now if she could just get here already!

Susanne spent the day trying to tidy up the house and do some household chores. This was of course with the emphasis on try because it definitely did not work out as planned. Susanne continued to be a slave to the pumping and feeding schedule. It was a vicious cycle that always made the day fly by without allowing for any time to do much of anything else. The only positive side to it all was that it was all for the sake of precious Paxton.

Moppy picked up Jill from the Metro station and brought her to Susanne's house. After a warm welcome from both dogs, Jill finally got to meet baby Paxton. She was so filled with joy and seemed like she couldn't get enough of him. Jill came ready to work and insisted that she be shown how to disassemble Paxon's NG feeding when it was completed. She offered to take on that responsibility overnight just like Aunt Leenie and Gigi had before in order to give Susanne a little bit more time to catch up on sleep.

Susanne decided that it might be a good idea for Moppy to come over every night this week to learn how to set up and disconnect Paxton's NG feedings. This was because Moppy was going to be watching Paxton, for the short term, when Susanne starts work next week.

Jill and Susanne stayed up late into the evening catching up on lost time. Being at a loss for words had never been a problem for those two.

Back To Reality

Paxton had his first follow up visit with his cardiologist today since being discharged from the hospital. Susanne could not believe how quickly time was passing by. The first thing that Paxton had checked was his weight and height. He appeared to have lost a few ounces because according to their scale he only weighed 7 lb 8 oz. The good news was that he was getting taller by the minute. He was already up to 21 inches long. He was for sure going to take after his daddy. Next, Paxton had a 12 lead ECG done to assess his heart rate and rhythm. He was such a trooper through it all. It had been a while since he was hooked up to all of those wires. Next, the cardiologist came in and did a physical exam. She spent extra time listening to his heart and lungs with her stethoscope to assess how he was doing. Finally, Paxton had an ultrasound done of his heart. He was so well behaved, especially during this portion of the visit. Susanne held his hand the whole time and he ended up falling asleep. The nurse informed Susanne that this was not very common especially for newborns. Usually they have to pull out a bottle, pacifier, or even give sugar water to help calm them. Paxton did not need any of that. He was a model patient. Overall, the cardiologist thought that Paxton looked stable for the moment. She said that the shunt that was placed during his surgery was working well. It was still wide open, but as he got bigger he would outgrow the shunt. It would be at that time that Susanne would need to watch him extra carefully for any clinical signs that he was not getting enough blood to his lungs. The cardiologist was certain that he would need a second surgery by the time he was six months old, but she was still not sure which surgical approach would be the most effective at this time. Paxton would have to come back for an evaluation every two weeks until it was time to move on to the next step. This brought Susanne back to reality. She had almost forgotten that Paxton was not out of the woods. Since he had arrived home, she was living in a fantasy world feeling that he was pretty much a normal child. She overlooked all of the future obstacles he had yet to face because he appeared to be doing so well now. Unfortunately, he was still going to need multiple surgeries and even with those corrections there were no guarantees that they would improve his overall prognosis.

After being at the doctor's office for over two hours, it was well past Paxton's time to get a NG feeding. Before Susanne got on the road to head home, she set up his feeding for him to receive durng their drive there. People definitely stared at Susanne during this whole process, especially when she pulled out her stethoscope in the parking lot to check his tube placement. Finally, they were well on their way.

On the way home, there was a trucker that had been tailgating Susanne for a short distance for no apparent reason. Once they were at a stop light, the trucker continued to inch forward until he was as close as he possibly could be to Susanne's car without hittng her. He was trying to intimidate her for no reason other than for personal satisfaction. This made Susanne really angry, especially since she had a newborn in the back seat that he could clearly see. If that wasn't enough, he continued to bully her by revving his engine and honking his horn. Susanne decided to comply for the sake of Paxton's safety, but she was intelligent enough to copy down all of the information from the truck he was driving. When she got home, she contacted the company about the incident and discussed her concerns. The company apologized profusely and promised that he would be punished for what he had done. Management knew exactly who the driver was and assured Susanne that he would be written up and dealt with appropriately. Susanne felt on top of the world that she got to have the last word. That guy won't know what hit him when he comes back tomorrow from his time on the road. Susanne was delighted with the idea that he would never forget her face.

Paxton spent the rest of the afternoon catching up on sleep. He was exhausted from being out all day. Susanne had attempted to run a couple of errands before getting home which proved to be quite the challenge, especially with Paxton receiving his NG feeding. There was a sharp learning curve for sure.

Moppy stopped by in the evening to start learning how to administer Paxton's NG feedings. She would be coming by every night this week to get as much practice as possible before Susanne had to go back to work. After Paxton was taken care of, Moppy went out to grab them some dinner. They had a nice time catching up with each other before Moppy had to head home.

Paxton could not wait until tomorrow because he was too excited about getting to meet his Aunt Jill for the first time. She was coming all the way down from New York to spend the rest of the week with them. Yay!

Scott's Got Work To Do

Today was pretty low key. Scott had a ton of work that he needed to catch up on and Susanne was preoccupied with the baby. After having breakfast in bed, Scott hit the ground running. He was occupied all day trying to catch up from the week before. This allowed Susanne to get some household chores done in between the pumping and feeding Paxton. Susanne hated that they could not have more quality time together, but she would rather have him in the house working than not at all.

Maverick continued to get spoiled throughout the day. He received star quality treatment. Scott and Susanne fluffed his dog beds, brought him water, fed him some of what they had for dinner, and once again assisted him into their bed for a good night's rest. Now Maverick expects nothing but the best. Spoiled, old dog.

Ignorance Is Bliss

Scott ended up coming home in the early afternoon. He was feeling much better after resting up and giving his body time to recuperate. Susanne and Paxton were happy to see him.

Scott arrived just in time to run some errands with the family. Susanne was relieved that she would have extra hands this go round. Maverick got to come along for the ride again, but this time it was because Susanne had some concerns about his health. Earlier that day, Maverick had another fainting episode which happened secondary to his underlying heart condition. The fainting episodes he was having appeared to be increasing in frequency despite being on medication. The episodes themselves were also more worrisome because Susanne was having more and more difficulty finding a pulse and the last two times he seemed to go completely limp. Maverick appeared to respond after Susanne would do some chest compressions. These were some of the scariest moments for Susanne especially when she had to witness them without Scott being home. Maverick also had some concerning lumps that Susanne had recently noticed. Susanne was suspicious that they were enlarged lymph nodes, but she wanted to confirm it by taking some samples and looking at them under the microscope. Unfortunately, it was not great news. The hardest part for Susanne was looking at the slides and then looking up at her husband knowing that she had to tell him the bad news. Maverick was Scott's first official son. Scott had raised Maverick from a tiny pup. Maverick had been with Scott and Susanne since they started dating. Susanne even met Maverick before she met Scott...and of course fell in love with him first too. They could not imagine their lives without him. He had never been a typical dog. They always joked that he was a person and not a dog. He was the most well mannered, handsome gentleman anyone could ever know. It will be a tough road ahead for everyone, but they are going to fight for his life just like they did with Paxton. Scott and Susanne were not sure how much more bad news they could handle. They were definitely taking it one day at a time and hoping for a break from the bad streak.

Scott and Susanne felt uplifted to have some of their friends be there to support them through the difficult moment of finding out Maverick's diagnosis. It was comforting to know that they understood what they were going through since most of them had experienced the same situation with their own personal dogs. Susanne almost felt like having too much knowledge in this situation made it worse. As some may say, ignorance is bliss.

Scott and Susanne decided to end the evening like they often did with watching a movie in bed. It was a little different than usual because they invited Maverick on the bed with them. He had not done this in years because the newer bed was too high for him to jump up onto due to his arthritis. It wasn't like the good old days when the mattresses were on the floor, which provided easy access. After Maverick received some assistance to get up on the bed, they all enjoyed some quality snuggle time together. Scott and Susanne did not want to ever let him go. He's such a good boy.

We love you Maverick!

What a handful!

Susanne got a somewhat rude phone call from an individual at Inova Fairfax Hospital earlier this morning requesting that she contact her insurace company to inform them that they were Paxton's primary insurance. This was confusing to Susanne because she thought that this was common knowledge by now. It appeared that the insurance company already knew this information especially since Susanne had started receiving information about claims submitted and hospital bills for Paxton. Susanne first contacted Paxton's case manager through the insurace company. She was then directed to another person from a different department to address this issue. The new person informed her that once again this was not the correct department to speak with. So, after talking with four different individuals, it was finally discovered that the original person that contacted Susanne this morning needed to call the insurance company herself to address this matter. It was a mistake made by Inova Fairfax Hospital that needed to be corrected. Susanne had to then call the woman that called her this morning to pass along the message that she needed to contact the insurance company to correct this issue and oh by the way you just wasted an hour of her time. Thanks lady!

Today was Susanne's first day that she had to pack up the whole kit and kaboodle to go to work for a meeting. This was the first time that Paxton would get an NG feeding away from home, which proved to be quite an ordeal. This took a lot of planning on Susanne's part in order to not forget anything important. She had to figure out how to keep his food cold until it was time for him to eat and then figure out a way to warm it up for his actual feeding. Luckily, Paxton had his own personal bookbag that held all of the supplies needed to administer a feeding, but this proved to be too small to hold anything else necessary for the process. This left Susanne trying to find a place for the stethoscope and syringe needed to check the placement of the NG tube prior to a feeding. She also needed a place for his medication to be stored and a spot for the sterile water and syringe used to flush his tube after he was finished. If that wasn't enough, Paxton also needed a fully stocked diaper bag in case he needed his diaper changed during their travels. Susanne made sure not to forget a blanket in case he got cold and his favorite Wubba Nub pacifier for soothing. The finishing touches included the car seat, stroller, and Maverick. Maverick was coming along for the ride to have his picture taken with Susanne for work. By the end of it all, it looked like Susanne had packed for a weekend getaway.

Susanne thought she was well on her way when she saw a poor little turtle trying to cross the road. She stopped the car immediately to help it along when she realized that someone had hit him with their car. Susanne decided that the turtle should not be left there to suffer so she packed him up to go along for the ride.

Susanne made it safely to work which was a step in the right direction. Getting everyone and everything out of the car and inside was another story. If someone would have had a video camera this would for sure be on You Tube. The title would read, "First time mother tries to handle her child, her dog, and a turtle all at once...what was she thinking?"

Paxton got to meet a lot of his mommy's close friends and other co-workers. He did very well with all of the attention. Susanne didn't expect anything less since he had already proven to be a lady's man. Susanne's meeting went longer than expected. It also took more time than she thought it would to reload the car. Two dirty diapers later and then they were on the road again. The timing could not have been worse. It was the middle of rush hour traffic, which would be okay except they live in Northern Virginia. Paxton was supposed to have an appointment with his nurse back at the house around five o'clock. Susanne contacted the nurse to let her know about the situation and that they would be late. The nurse understood and decided to wait. After she waited entirely too long, she decided to leave and reschedule for another day. Susanne felt horribly, especially since she pulled in the driveway one minute after the nurse had left. Let's just say that all in all Susanne's first outing with Paxton did not go as planned. The lesson from today was that you always need more time than you think. Hopefully Susanne will get quicker with more practice.

Susanne was looking forward to Scott coming home this evening to make up for an exhausting day. Unfortunately, Susanne got a call from Scott informing her that he did not feel well and that he would not make it home tonight. He wanted to prevent the risk of spreading something to Paxton just in case. He was going to reassess how he felt in the morning and decide from there what to do. Susanne was super bummed, but understood his decision. Paxton sure missed his daddy.

To Pee or Not To Pee

Paxton had an appointment with his pediatrician at 7:45 am this morning. He weighed in at 7 lb 12 oz, which seemed like an impressive amount of weight gain to Susanne. Unfortunately, the pediatrician thought otherwise. She wanted Paxton to be gaining about one ounce per day instead of half of an ounce per day. She was concerned that he may be burning off too many calories due to his heart being stressed and overworked with just normal activity. She was also concerned that his oxygen saturation levels were still in the nineties despite being on medication that was supposed to help bring the value down. Susanne had also noticed that Paxton had begun coughing more than normal over the last few days. Even though it was a dry cough and his lungs sounded clear, the doctor was concerned that he may be getting too much blood flow to his lungs. This could in turn cause leakage of the vessels and ultimately result in fluid build up in the lungs. The pediatrician wanted to contact the cardiologist to discuss what should be done. Paxton still did not have a speech therapist set in place to help them work on his oral feedings. The pediatrician was having a hard time finding a practice in this area that had a lot of experience with children that have Pierre Robin. Susanne was frustrated that Paxton was losing precious time because there was not the appropriate therapists set in place.

Luckily, Susanne was able to take a thirty minute nap later in the day. She ended up snuggling up with her son, which made it that much better.

Most of the day, Susanne spent time trying to complete some of the things on her to do list. She found that it was difficult to accomplish with having a little one to look after. It seemed to work best for her to choose a couple of things off of the list and do a little bit intermittently so by the end of the day at least something would have been completed.

The pediatrician contacted Susanne at the end of the day to inform her that the cardiologist wanted to put Paxton on Lasix, which is a diuretic. Susanne can't wait to change more diapers.

Fortunately, Paxton's follow up with the cardiologist is on Monday. Susanne is anxiously awaiting this appointment so that she can know how Paxton's heart is holding up.

How You Feeling...Hot, Hot, Hot!

Susanne and Paxton were very sad to see Gigi and Poppy leave this morning. It never feels like enough time. Hopefully, they will be back soon.

Susanne made sure to utilize her time well with Paxton today. Whenever he was awake she made sure to work with him in one way or another. The first chance she got, she placed him on his play gym to work on tummy time for a little while. He still seemed a little behind with his head control. She also had him practice a lot of the exercises that the occupational therapist showed her in the hospital. He breezed right through those. In addition to that, Paxton had a parade of toys dance by him at different times during the day for visual stimulation. It may be too early to tell, but Susanne thought his favorite toy might be his bendy bug rattle. His face just seemed to light up when they played with that toy. Paxton also got to try out his bouncer for the first time today. The cool thing about his bouncer was that it had a contoured seat, it played cool music, it had a vibrate option, and had a cute mobile for him to look at. Who wouldn't have fun in that thing?

Susanne noticed today how well all of the animals had adjusted to the new member of the family. They seemed to like Paxton a lot. James surprised Susanne with the lack of interest he had in Paxton when he was on the floor playing on play gym. This was very exciting especially because she had been so apprehensive about how James was going to react to the baby.

So far, Paxton had been doing well on the breast milk. Susanne had noticed a difference in his demeanor as well as his stomach appeared less distended. He was also not having any issues with passing stool like he was on the formula. All in all, this appeared to be a good change for him. There was still no visible blood noted in his stool...woo hoo!

Today was another scorcher. It was over ninety degrees again, which would be nice if there had been a gradual increase in the temperature. Susanne could not believe that she had to turn on her air conditioner in the month of April. With all of the weather changes, Susanne got a really bad sinus headache towards the end of the day. For all of you mothers out there, you know how difficult it is to take care of a child when your head is pounding.

Susanne just pushed through the pain until the Motrin kicked in. Susanne bathed Paxton before bedtime because he had been sweating some throughout the day. He was becoming more and more comfortable with getting bathed.

Susanne tried to get in bed early because Paxton has an appointment with his pediatrician early tomorrow morning. Not that it really mattered since she would be up every couple of hours, but every little bit helped.

Is It Summertime Already?

Susanne was so grateful to have such awesome parents. First of all, Gigi helped her with some of Paxton's overnight care. Gigi learned to disassemble Paxton's NG feedings just like Colleen did the other night. This helped Susanne to get more sleep than she normally did, which was so desperately needed at this point. To top that off, Gigi and Poppy spent all morning cleaning the house while Susanne completed some of the things on her to do list. Poppy even spent some extra time scrubbing off the snarf that had accumulated on her windows from the dogs. He definitely had to put some elbow grease behind that.

Gigi thought that it would be good for Susanne to get out of the house and do something mindless like shopping. Susanne liked this idea. Poppy volunteered to babysit Paxton while the girls went out on the town. When they returned home, they realized that Poppy and Paxton had a busy afternoon. Poppy had read Paxton some books, played with some of his toys, took a nap, and walked around the house. Paxton decided to reward Poppy for all of the fun by having three dirty diapers within less than two hours. Way to go Paxton.

Later in the day, the nurse stopped by for another evaluation. Poppy videotaped the entire visit so that Scott could see everything that Paxton had done and how brave he was. The best news of the day was that Paxton had continued to gain weight. He currently weighed 7 lb 10 oz. According to the nurse's last recorded weight, this was an increase of 4 oz. The fact that Paxton was having normal stool and he was gaining weight were both good indicators that he was doing well on the breast milk. Hallelujah!

Luckily, everyone spent most of the day inside. This was a good thing because it reached well into the nineties later in the day. Who would have thought that you could get actually get sunburned in April?

Everyone topped off the evening by eating shrimp tacos and watching American Idol.