Day 23: Groundhog Day

As you all know, Paxton was born on Groundhog Day. Scott and Susanne honestly feel like this must be a sick joke because they feel like they are living the same day over and over again just like in the movie, "Groundhog Day".
Unfortunately, Susanne was informed today that Paxton's surgery has, yet again, been postponed. The new tentative date is Monday. This will be the third time the date has been changed within the last week. Scott's and Susanne's patience is definitely being tested. They would punch a wall if they thought it would help. Luckily, the reasoning for postponing it the last two times has not been related to any medical concerns regarding Paxton. It has all been due to scheduling conflicts and the surgeons' desire to be on duty the following few days post-op to be able to follow his case.
The neonatologist updated Susanne on Paxton's status. He informed her that they have postponed restarting his feedings until after surgery. Hopefully, his gastrointestinal tract will recognize food when it is introduced again.
Overall, Paxton has been stable. His oxygen levels have been well regulated for the most part. The doctor feels that when his oxygen levels do drop and his respiration rate increases significantly that it is related to his cardiac issues vs. his respiratory issues from the Pierre Robin sequence. This is promising in the fact that Paxton may not need anything done for the Pierre Robin issue until later on.
Today was the first day that the top to his isolette was elevated. This is good news because it indicates that he can regulate his temperature well on his own instead of needing an outside source of heat.
Susanne also met with the geneticist today. She confirmed that his chromosomal panel and microarray tests were all within normal limits. They are currently thinking that both the Pierre Robin sequence and the Ebstein's anomaly are isolated events. They cannot say for sure if he will have any delays in development or any learning disabilities, but all of the major genetic disorders have been ruled out. This is all good news...we think?
Susanne also met with one of the nurses to discuss what to expect after Paxton's surgery. She used a doll to demonstrate all of his new gear that he would be sporting. The list includes, but is not limited to, a midline incision on his chest, a chest tube, a urinary catheter, ECG leads, pulse oximeter, endotracheal tube, possible pacemaker, temperature probe, PICC line, and arterial line. YIKES!!!!
The nurse informed Susanne that after Paxton has made a full recovery from his cardiac surgery, the next step will be to work on getting him to eat and gaining weight. If he does well with all of that, then he can potentially go home. It doesn't appear that this will be in the immediate future, but it helps to have a timeline.