As I sit her sandwiched by my two amazing boys on the eve of N’s surgery. I don’t know what to think about it all. I’m so very excited to be getting rid of that blasted NG tube and having full access to his cheeks! That’s something I haven’t had since the first day he was born. But, at what cost? I’m losing his perfectly smooth, soft, and kissable belly. I’m going to watch his body create a scar and heal around a foreign object that goes into his stomach. He will never be scar free again. His soft baby skin will have a cut and scar.

I know it’s not that big of a deal in the grand scheme of things and it honestly is the safer and better option for him but the thought of creating more scars makes me cry.

I fully trust in the doctors who will have my son’s body in their skilled hands tomorrow. I don’t have fear of the surgery, it’s the after effects and lifelong implications. It’s like the end of my grieving process for eating orally (for now). Even though I knew it would be years before he’d eat orally, I clung to an unrealistic subliminal hope that a switch would go off and he could safely try eating. Then we could avoid permanently scarring him. How this could happen when we can’t even try feeding him is beyond me but it’s one of those realistic hopes I had in the very back of my mind. I knew that wouldn’t happen but this is 100% ending that hope. The surgery is in less than 12 hours and he hasn’t taken anything orally since April 16th when we were labelled NPO. This tube is happening.

I know scars can be called battle wounds but this is enough. He has enough battle wounds and there are more to come. I just wanted his body to remain the way he was created. But it wasn’t meant to be. I will get over the scar once I see it and deal with it on a daily basis but until then I’m fearful and sad for it.

I will say, I am very grateful with medical advancements because decades ago he wouldn’t have survived. He needs tube feeding to live and thrive and he’s certainly doing both of those things and making huge gains in many areas. But without that tube…well I don’t want to think about where he’d be and what my life would be like without him having a tube.

But it’s almost midnight and here I am.

Not sleeping.

Eli on the left and N on my right.

It’s a great place to be. Snuggled from both sides. Too bad N is such a loud sleeper. Damn stridor and floppy larnyx!

But if I had to be anywhere suffering from nerves and insomnia this is the place I’d always want to be!

Well folks, I should try to sleep. Tomorrow and the coming days are going to be quite long and draining I think.

Send any and all well wishes, healthy vibes our way tomorrow please.

10:15am MST.

That’s when they’ll take my littlest baby to a room I can’t go and I leave all my trust in complete strangers. He’ll be taken to a strange room, probably with a funny smell and bright lights. He won’t be able to hear since his aids will have to be out. I hope they’ll move swiftly and put him to sleep so he won’t be scared in this cold, unfamiliar place away from his parents and brother who love him.

I’ll be waiting with baited breath for 2 hours, plus recovery time, until I can see him again. Thank goodness we will have E there to take our mind of things and make things seem semi-“normal”.

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