My Feelings on the NICU

So, we have been posting a lot lately about how Isaac is doing in the NICU, but not a lot about how we are doing and what we are feeling. I have been thinking a lot about this lately – how I am feeling, and how I should be feeling – about all this. Isaac will hit his 2-week-old birthday tomorrow, and he hasn’t even been outside yet. Yesterday, though, after I gave him a bath (so he had all of his monitors off), I took him over to a window and let him look outside (although he mostly just squinted at the bright light coming in). These last two weeks have been a blur – I can’t really keep track anymore of what has happened on each specific day since we’ve been here. And it seems like his stay in the NICU has gone on forever. The surgeon originally told us that he thought we would be taking Isaac home on the Sunday or Monday after he was born, but since the disappointment of not taking him home that early has worn off, I am just trying to not figure out a specific day when I think he should be ready to come home, because I think it is likely that his stay here may continue to drag on longer than we plan.

It is a mix of emotions being here. I am glad that Isaac is being taken care of by competent doctors and nurses, and that he is constantly being monitored in case something goes wrong. I am glad that the night he had that bad episode he was taken care of and people were able to help him right away. But it is hard having him here. I have been thinking a lot about it, and I think this has been the hardest thing I’ve ever had happen in my life so far. Thinking that makes me realize how nice my life has been, and how we haven’t had many difficult trials. I know that it could be a lot worse – he could have some serious problem that would affect him (and us) for the rest of his life. That’s why I keep thinking that we should be happy. Even though he has been in the NICU longer than we expected at first, they have continued to tell us from the beginning that they think he will have no long-term problems after we get him home. But at the same time that I am telling myself we should be grateful for that, I am still feeling bad that we don’t have our baby home and that everything is not normal right now. It is reassuring to me that as I have been feeling this way, I haven’t thought to question why this is happening to us or to question my faith in God. I know there is a reason. The thing that keeps coming to me is “endure to the end” – I think that is the reason for this, at least for me.

I have had times when I just feel sad about this whole thing. When I spend each day at the hospital, then I come home tired (just mentally, physically, and emotionally worn out), and my boys are excited to see me. I am excited to see them too – I know that not being with me for the majority of each day must be hard on them too. But they are active and sometimes wild, and I am tired by the end of the day, and then I end up getting mad or yelling at them. And while I am doing that, I am thinking, I am seeing what can happen when you have a sick child, and we have been blessed with all of these healthy, strong, happy children – I should be grateful that they are well, not getting frustrated with them when they are fussy or fighting with each other.

The other day, I walked into Isaac’s little room in the NICU, and the lights were turned off and he was sleeping soundly, all alone. And I just started crying, thinking of him all alone, not being held as much as he would be if he were home with us. And I am thinking, logically, that the nurse probably just finished taking care of him a few minutes before I got there, and I know that the nurses are feeding him about every three hours when I am not there, so he is being held at least every three hours during his feedings. But I just cried, thinking of my baby there, alone in the dark.

I wonder if he will be so used to a new nurse on shift every 12 hours, that he will not bond with me like my other kids have. Or what if he is so used to being in the NICU, where there is the noise of monitors beeping, nurses socializing, and other babies crying – but no big brothers running around playing and yelling – will he adjust alright to sleeping at home? And I know the nurses are feeding him about every 3 hours – so, is he going to expect to be fed that often at home (even after we know he is getting plenty to eat), and will this affect his sleeping, so that he might not sleep through the night as early as the other boys did? I worry about what little problems like that might occur after we take him home, that may not have happened if he had been at home with us from the start. And, even though I know it is not logical, since they have told us from the beginning that this is a problem that they can fix and he should be better soon, I still worry that he could die from some bad episode with his breathing one night or something. I don’t think I could handle that. I know, realistically, that that won’t happen – but the thought of it is still there, in the back of my head.

And then I start thinking about bringing him home. I am definitely looking forward to that day. But what if his oxygen rates desat sometime in the night at home, and he won’t have any of the hospital monitors on there, and we don’t know there is a problem? They say that they won’t let him go home until he is doing fine without all the monitors, but who knows what could happen. I want to do normal things with him – to dress him in cute clothes from home, rather than just the plain NICU outfits. But it almost seems silly – to bring clothes in that will probably just get dirty and have to be taken back home to be washed, if we could just save our energy and let the nurses change his clothes and not worry about extra laundry until we take him home. I want to be able to walk around with him, but I have only taken him away from his monitors a couple times for a few minutes. I want to just have him home and have everything be normal. But I guess that will come soon enough. And maybe by then I will be thinking of all the good nights of sleep I got while Isaac was in the NICU with nurses to stay up and take care of him all night long.

It is weird how something like this can make you feel. I am just really looking forward to being home and being a normal family again.