First and foremost, our hearts go out to any family that has a child with a disability or that has been diagnosed with a serious illness. It is not an easy thing to deal with. As a parent, you already worry about the well being of your child. If that child is also suffering from an illness or has a disability, then that worry increases tremendously. The most difficult part of it all is that they are truly innocent beings that just want to be loved. They do not understand what is going on and they do not deserve to go through something so awful. It is so difficult not to feel sorry for yourself or to feel alone in a situation like this. It is easy to become overwhelmed and to have a hard time understanding why this happened to you. It is easier to give up. It is easier to give in. It is easier to walk away and quit, but you can't. You have to find an inner strength that you never knew existed and move forward. Even though your patience and faith is continuously challenged along the way, you realize that you have been chosen to be the source of love and strength for this little miracle. You realize that it is not just about you, but something much larger. In the end, this incredible miracle of life has taught you something about yourself that you didn't know was ever there. They make you a better version of you and they give you the reason to continue to push through even when you think you can't.
Today, Susanne came to the realization that it is important to truly have faith and turn all of your worries over to the Lord. All day today, Susanne kept telling Paxton to fight for his life. She could see that he has it in him for sure. The nurses continued to try and move his PICC line with certain movements of his arm. They would check its position by taking x-rays. After two attempts it finally worked. Susanne was so happy that her baby didn't have to get poked again.
Something that had changed since the last time Susanne was at the hospital was that all of the babies in the NICU were placed in isolation. There was a baby that had been in the NICU for a short time that was positive for a contagious respiratory disease called RSV. Susanne accidentally lied to Paxton about not having to get poked because he ended up having to get a vaccine to protect him against this respiratory disease. He is overall doing well at the moment. He is still on a bunch of antibiotics and cannot have anything by mouth until Saturday. This was all in an attempt to correct the bloody stool which has since resolved. YAY!
Tonight, Susanne went over to Colleen and Chris's house for a delicious dinner. It is still so difficult to talk about our situation without getting upset, but they always have the right thing to say. The distraction from our current situation was helpful. The Neumann's rock!
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