Always Two Steps Behind

Susanne was up around 5:45am this morning. She needed to get on the road as soon as possible because Paxton had his first appointment of the day at 2:00pm with his pediatrician in Virginia. Once Paxton was set up with his first feeding, she still had to shower and finish packing. There was always so much that she couldn't do the day before. Most of it she had to wait to pack until right before she was walking out of the door. The reason for this was that Paxton was either still using certain items or the items needed to be kept cold. There never seemed to be enough time to do it all. There were always too many things that needed to be done. If Susanne could just clone herself, maybe this problem would be resolved.

After setting up Paxton's continuous feeding for the six hour drive and lining his car seat with ice packs, they were on their way. Susanne knew that they would have no time to stop anywhere because they were already behind schedule. Luckily, Paxton only cried once throughout the entire trip. Within minutes of him shedding his first tears, he resolved whatever problem he was having on his own. The good Lord must have been looking out. The bigger issue that Susanne faced was that she desperately needed to go to the bathroom. She had too many liquids this morning that seemed to have run straight through her system. It didn't matter how bad it got, she was determined not to stop, no matter what. She was running late and she didn't want to add to her time. She had already contacted the pediatrician's office earlier in the day to let them know of her whereabouts. She wanted to make sure that she didn't need to reschedule. They were very understanding of Susanne's circumstance and told her they would hold her appointment. Susanne and Paxton were well known at the doctor's office by now. They knew that she was traveling back and forth from North Carolina to Virginia every other week. They always tried to be very accomodating to her because of her unique situation. Susanne could not think of many businesses that were that caring. She continued to feel extremely blessed to have found such an awesome pediatrician and never took any of the staff for granted.

Susanne ended up being just around fifteen minutes late. She rushed inside as quickly as her little legs would get her there. They took them right back to an exam room to get started. First, they got Paxton's weight, which they did at each visit. Today, he was 16 lbs 8oz. He was still gaining weight even though it wasn't at a rapid pace. This was acceptable as long as he didn't lose any weight. His oxygen saturation level averaged around 87, which was much improved from where it was pre-surgery. Paxton had to feel better from that alone. When the pediatrician came in, Susanne was surprised to see her on crutches. She had recently run the Marine Corp. Marathon and managed to get a stress fracture to her femoral head in the process. She did end up crossing the finish line despite being injured and in pain. Way to go Dr. Lynn!

The pediatrician was beyond excited that Paxton looked so great. She commented on the fact that he looked the best she had ever remembered seeing him. This was music to Susanne's ears. The recommendations following this appointment were for Paxton to be seen by a gastroenterologist for long term management and care for his G-tube and to be seen by a neuro-ophthalmologist for an evaluation for his recent light sensitivity and to try to help rule out Moebius Syndrome. Susanne was eager to find out how often Paxton's G-tube would need to be changed out. She thought this had to be less traumatizing for him than the NG tube, but she was unsure. It was scarier for her to think about because once the G-tube was removed, the hole where it came out of opened up directly to his stomach. This alone increased his chance of infection by a lot.

Since they were heading into the winter season, Paxton was required to have a few vaccinations to try to reduce his risk of being exposed to the flu and RSV. Both were viruses that were very prevalent during the cold months. Paxton was at a higher risk of contracting a more serious form of both diseases because of his low birth weight and heart disease. Susanne was informed that he would need the Synagis vaccine once a month until April. Due to Paxton's weight, the vaccine had to be separated into two separate syringes. He ended up getting a total of three injections even though he was only getting two vaccines. All of the shots were given in the thigh muscle. They requested that Susanne stay about five to ten minutes after the vaccines were administered to monitor for any reaction. Thankfully, he seemed to handle them well.

Since Susanne and Paxton had to wait around for that extra time, they ended up running behind to their next appointment. Luckily, this appointment was at their house. Susanne had been keeping the therapist informed of the situation since the time that they arrived back in Virginia. The therapist was so kind to have pushed the appointment back by fifteen minutes to give Susanne sufficient time to get home. Once Susanne got there, she was relieved that she could finally go to the bathroom. She was surprised she had made it this long. She was thankful that it had not turned into an emergency situation where she had to use one of Paxton's diapers.

Today the therapist was going to be working on motor skills with Paxton. He was so exhausted from the crazy day that he actually fell asleep during tummy time. When they started to notice him close his eyes, they tried everything to keep him awake. No matter their efforts, Paxton was out within minutes. Susanne felt horrible that she had wasted the therapist's time, but she reassured her that it was more common than one would think. Working with infants was always a gamble because they needed much more sleep than adults. She let their internal clock dictate how much or how little they could stand to do during any given time. She had patients fall asleep on her plenty.

Once Susanne had unpacked the car, pumped, set up Paxton's next feeding, and went through the mail, she was ready for a nap herself. Knowing that she may never get back up, she opted to cook spaghetti for dinner and watch some Grey's Anatomy instead. Mind you, this was not the DVRed version of Grey's...it was real time. In saying this, by the time Susanne actually got to the point of sitting down and eating dinner it was 9:00pm. So sad!

Susanne greeted her Tempurpedic bed with open arms. She couldn't wait to catch up on old times. Now if she could just try to keep her eyes open until the last feeding of the night, she would be all good.