Four more sleeps. 16 more feeds. 101 more hours. 20(ish) more diaper changes. That’s all that’s left until Penelope gets her G-tube. On Monday morning, we will report to the hospital at 10 a.m. and Penelope will have her surgery done at noon to insert the G-tube. We will then stay in the hospital for 3-4 days while they monitor her for complications and to see how she tolerates the feeds through her new tube.

The NG tube's days are numbered

The NG tube’s days are numbered

I am approaching Monday with a mixed bag of emotions. I know that her quality of life will improve with the G-tube. She will have her hands free once again, and will no longer have that awful NG tube taped to her face. I hope we will see improvements in her developmental skills and with oral feeding with the G-tube instead of the NG. But I am also scared. I know that the risk of complications is small. I know that the potential benefits of the G-tube outweigh the potential risks. But a small risk of complications is not a zero risk of complications. And knowing that she has already defied odds with her rare chromosome deletion means hearing that there is little chance of something going wrong is no longer very comforting.

There’s also the fact that the G-tube is a more permanent fixture than an NG tube. An NG tube is, by nature, temporary. It can be easily removed at any time, with no lasting evidence that it was ever needed. A G-tube, on the other hand, can be removed if it’s no longer needed, but it’s not as easy and there will be a scar. I guess I’ve just been hoping that she would somehow improve her swallowing ability before a G-tube was inserted. This is clearly not going to be the case, and I’ve just got to make my peace with that.

So, yeah. Mixed feelings. Fear mixed with positivity and moving toward acceptance. I am going to take these next four days to cover her unblemished belly with kisses and tickles and just drink her in. I don’t know where we will be in a week or a month or six months. I do know that things will be different. I am going to prepare myself for a big change on Monday- hopefully, a change for the better.

Snapped this when the tube came out the other day. G-tube means we will always see her beautiful face, unobscured

Snapped this when the tube came out the other day. G-tube means we will always see her beautiful face, unobscured


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