Day 34: Alright already!

Susanne got to the hospital today and found out that Paxton was started on a hypoallergenic formula called Nutramigen. They discontinued Susanne's milk because his stool continued to show up positive for microscopic amounts of blood. The doctors were still concerned about a possible allergy to something in Susanne's milk like the protein found in cow's milk so they felt like they would rather be safe than sorry. If there is success with this change, then they may consider challenging his system one more time with Susanne's milk. Susanne was really hoping to try to get to nurse him sometime soon, but this might not be an option. In the meantime, Susanne will continue to pump every two to three hours until told otherwise. She hopes all of her hard work and dedication to pumping won't go to waste. Susanne would love it if Paxton could be able to reap the benefits of breast milk, but understands that we ultimately have to do what is best for Paxton.
Paxton's blood pressure had been running a little higher than the doctors would like it to be so he was placed on an antihypertensive medication. It was really important to stabilize Paxton's blood pressure as soon as possible, especially since he had just had heart surgery only a week ago. Otherwise, things were looking relatively stable.
Susanne watched Paxton sleep a lot today. He appeared to be content so she didn't want to disturb him. When he was awake, she tried to engage him by turning on a music and motion soother that attached to his crib. The music, lights,and action helped to stimulate his vision and imagination. Research shows that babies who receive a sufficient amount of visual stimulation develop vision faster than those that do not. Paxton definitely liked his new toy.
Susanne had a bit of a rough day. It was difficult for her to hear about some of the new set backs because Paxton had been doing so well. Even though they are small in comparison to other things he has had to deal with, the reality of Paxton not getting out of the hospital anytime soon really set in. His next goal is to transition from the PICU to intermediate care where the focus will be on seeing if he can eat by mouth. There will be more challenges to come, especially with his cleft soft palate, but Susanne and Scott are hoping Paxton won't need a feeding tube to go home with. Until then, the PICU remains his home.