Kai and I are all tucked in and ready for bed tonight. He had another sleepy day today. He has barely been awake a few hours total. He is so tired he just can’t keep his eyes open. His breathing is also changing. Yesterday I noticed a few gasps, and then again his morning. By tonight there where more gasps and his breathing has been a little erratic and shallow. He is getting weaker and skinnier. When I pick him up now he feels so fragile and frail. His skin seems so thin and delicate and he color is changing.
We have been working on getting his pain meds back through his g-tube rather than IV to make it easier at home, but honestly after seeing how today went I don’t think we’r going to make it home.
I had the nurse unhook his hydration line for a few hours this evening so we could just hold him. He did his best to keep his eyes open and entertain our constant kisses and touching. After about an hour he began to get irritated with my constant prodding to see his eye, constantly checking his breaths, constantly rubbing his checks to mine. He just wanted to rest, so here we lay. I am still starring at him and kissing him and touching his cheeks and every now and then he will open his eyes just enough to glare at me as if to say that’s enough! I told him I am sorry and that its ok to rest. I told him that it is enough! I told him I will be here anytime he wants to open his eyes, but it is okay to sleep.
So for now i will snuggle up close and hold his hands in mine. I will sleep with his head tucked gently under my chin. I will try to not to stay up counting his breath or heartbeats
but just be here with him, holding him close, trying to convince myself that it is ok to hold on and it is ok to let him go.
Good night village
hold your babies tight xox