Jaime speaking...I just got back to the ICU here at 2 am after sleeping for about 5 1/2 hours. I hadn't slept in 36 and was starting to lose it so I went home while Laura's sister stayed with her here. I don't have words for any of this but I'll try because it helps me to tell the stories.
He's sedated right now which is so much better and so much worse than before. He can rest now, doesn't fight his tube, gives us a little break since he has to be in his isolette and can't be held and is HORRIBLE because he can't be held, in almost no way resembles himself and if you catch him, as I just did, in between doses when he's slightly lucid and making eye contact, he thrashes around a bit (he's still the same scrappy baby) which isn't actually good for him.
I just got here and went to check on him and his eyes were open. At first they seemed a little vacant and I wasn't sure he really knew I was there but then he started moving. I kissed his head and talked to him and could tell he knew it was me. But then he got so agitated that his nurse (he's so sick he has his OWN nurse) had to check on him b/c his heart rate monitor started alarming. I stepped back and sat down in the rocking chair in our area, out of line of sight so he could calm down. I have just been crying and crying (and I'm not really a crier, for those of you who know me). The nurse came over with tissues and said to not be afraid to touch him (I think she meant in a general sense), but when I asked if I should leave him alone right now, she said I could be near him but it was better to let him rest so probably best not to touch him right now.
To feel like showing affection to your own child can hurt him is just about the worst feeling I have ever had.
Any light at the end of this tunnel feels too far away to be something to hold onto. If he's going to get better, it won't be apparent for at least 5 more days and he'll be here for at least 3 weeks. That's the best option. I have no idea how we will make it through 3 weeks of this kind of hell but people do it all the time. We just have to pace The biggest thing for Laura and I is not wanting to be separated from each other. Leaving tonight to go sleep almost killed me but I knew if I didn't I might just completely fall apart and that's not really helpful for anyone.
I feel a little more human now. I'm a little less numb with more sleep which is good and bad. I just sort of have tears streaming down my face as a state of being. I hope things feel better in the morning.
I will say that we have THE most incredible support I can imagine. When the social worker came by yesterday morning and asked what kind of support we have, we actually laughed. I don't think they've seen the likes of us before :-)
Keep the love coming, keep the visits coming, and most of all keep your loving, grounding, stay-in-your-body energy for Simon coming. He's the scrappiest, strongest baby I've ever seen and I'm thinking if any baby has a chance to make it through this, it's this guy.
With all my love