Pre-Surgery

A deep dread has set in! Tomorrow afternoon I will have to release my infant son into the hands of a Doctor I have never met. This Doctor will perform a fairly simple surgery, but will forever change my relationship with Payson. After tomorrow I will never again hold my infant son free and clear of any lines or tubes running from his precious body. Never again will I be able to carry my baby without a machine attached to him in some way. Never again will I have to have my infant son at home without assistance. Never again will I be able to get back these days, weeks and months of his life. We will never be able to start over with him fixed as an infant he will continue to grow and his infancy will be gone. My heart aches!

Someone, please, I beg, stop this! Don't allow this to happen to us! Lord, let it be me! I willingly and would happily take his place! Please Lord, have mercy on him! Let it be me! Can anyone hear me? Please! I just want to stop this! I don't want to have to let him go tomorrow! I don't want him to have another surgery that causes another obstacle and forever alters his appearance with a scar. His suffering and all the hurdles he is going to have to overcome is too much. If it can't be me do I have to watch this from the front row? I am helpless! All the comfort I can give is my hand and voice. That is just crappy comfort and doesn't do much in the scheme of it all. This goes against my maternal instinct to allow someone to cause him pain. I am supposed to protect him, but I can't do that for him. I don't want to do this! I can't do this! I just can't let go! How do I? I can't believe we are here. How did we get here? The whole goal all along was to be home by Christmas! Lord, what is the point of this! Please explain or help my heart to understand! I just wanted him home. Why did he have to have other conditions? Why did he have to have an imperfect trachea? Why, Lord, Why!!!!

Words have failed me before, but never as much as they have now. The anguish, hurt, disappointment and failure can't be expressed accurately. I tried, but words can't even begin to paint the picture strong enough. What it boils down too is that Payson is my last baby and I am having a damn hard time letting go of the idea of having normal baby time. The ones when you go to the mall and everyone coo's or when you walk by carrying your infant seat everyone looks in or family visits everyone has to hold the baby...those typical normal baby moments. I wasn't ready for this, never expected it and don't want it. People keep telling me that God must think we are really strong in order to give us this. No, I am not strong. Can't you see me I am on the floor giving a temper tantrum? See, I am weak! I don't want to do this, don't make me? What do I have to do to prove I am not strong enough for this? I can't do this...no, no, no. Please don't make me let go! Please let me have a few more months where he is just my baby, no wires, no machines, no nurses! It is the desire of my heart!

Despite how I feel the surgery will forge ahead and I will just have to deal. Every time I talk to the doctor to try to get a clearer understanding it seems the news gets worse. At first I thought he only had atresia, but then he had cutis aplasia. We then thought he'd have one surgery (maybe two), but we are now about to have #3 with talk of future surgeries. Then we thougth he had some breathing problems, but then it became clear he had this condition. Then he was just getting a trach, no ventilating needed. Now, he gets the trach and will be ventilated for a long period of time until his trachea no longer has a weakness, (usually by 24 months, but sometimes it doesn't go away). So, whatever news comes next this much we know:

He should have surgery after 2pm tomorrow.
He will be attached to a ventilator and maybe will be able to come off for periods of time later down the road.
This condition usually goes away by 24 months, but we are looking at 3-4 years of a trach to ensure the safety of his airway.
The traveling, (to visit family which we did often), will be put on hold for this period of time.
Apparently, there is a lot of support out there, but we feel like we are the only ones going through it.