Q&A: "spoiling" a sick baby

MFAMama asks:

"I'm a WAHM with three boys aged four, seventeen months, and ten weeks. The little one has been very ill all his life (soy and dairy protein allergies, reflux, esophagitis, weight loss, dehydration, and then a bout with RSV that didn't help matters AT ALL).  He has had two prolonged hospital stays (during which I abandoned the older two to their father and a succession of friends and family members and stayed by his side 24/7) and is currently dependent on an NG tube (which I had to learn to reinsert if it comes out) for all of his feedings and medications.  His feedings are every two and a half to three hours, and he gets two medications a total of five times per day at timed intervals (one twice a day half an hour before a feeding, the other three times a day one hour before a feeding).  Using the NG tube to feed and medicate him is complicated and, if done incorrectly, potentially fatal (you have to learn to use a stethoscope and check the tube's "placement" before putting anything down it for fear of dumping it into his lungs), and as a result I can't leave him with anybody, ever (my husband works outside the home and is squeamish of infants in general, nevermind infants with NG tubes, and we can't afford to hire a nurse to babysit). 

The baby's prognosis overall at this point is good, but he is expected to need the NG tube for at least another month and possibly several.  All issues of my personal sleep and sanity aside, I'm worried about the effect his illness has/will have on my other two children, and on my relationship with the people around me.  My husband and I are on the same page (thank goodness), but already I have caught some heat from "well-meaning" family and friends about leaving the other two to stay with the little guy in the hospital, and have started to hear a lot of remarks about "spoiling" and "how IS Mr. Center-of-the-Universe today, anyway?"  While some friends and family have amazed me with their empathy and willingness to help, it has been implied by others that I am neglecting or sleighting my other children by caring for the littlest one's special needs or else creating a monster by keeping the baby in my line of sight around the clock, but a) if he pulls the tube partway out and I don't see him do it and help him he could die from that, and b) crying excessively aggravates his condition and even if I did not tend to "spoil" babies anyway there wouldn't be any other option but to soothe him by any means that will work even if it means carrying him around for six hours, give or take.

  Can you think of any way to mitigate the damage to my older children? The middle guy is, IMO, less oblivious than you might think; he has a twenty-plus word vocabulary that does not include "Mommy" and asks for Daddy when he is upset.  And the four-year-old has been misbehaving in ways that are not like him (being mean to his brother, disobeying me and my husband, talking back).

   Also, do you have any ideas on how to respond to the people (ranging from strangers to dear friends and family) who make these ignorant remarks in a way that will hopefully alienate them as little as possible but also let them know in no uncertain terms that the things they say are inappropriate and hurtful?"

What is wrong with people?

What the fucking hell is wrong with people?!

It sounds to me like you guys are in a truly shitty situation, and everyone (in your house) is responding in the most appropriate way possible. You are caring for your teeny tiny baby, who needs his mother more than anything else at this point. Your husband is caring for your other children. Your oldest is acting out because of the stress and fear, which is all he can do and is completely reasonable in this situation. Your middle child is turning more to daddy. Everyone is doing what they need to do to get through this crisis.

You all know I'm not a psychologist, but I firmly believe that your older two will have no lasting effects from this short period of time. In another year, they won't remember that the baby was sick and they didn't have full-time access to you while you were tending to the baby. If anything, they'll remember that they hung out with dad and other people a lot then. But unless this turns into an ongoing, lifelong health problem that means the baby is always the biggest priority, this isn't going to be any more significant or stressful than it would be if you guys were moving cross-country or doing something else that disrupts things for a matter of a few months. Thank goodness humans are so flexible and adaptive.

I cannot believe that anyone is giving you crap about caring for your baby. He needs you. He's only 10 weeks old. Who thinks you can spoil a baby that young anyway, let alone a sick baby? You're supposed to just toss him to the wolves? Anyone who makes an even remotely negative comments about the way you are nursing your child to health (when half of us couldn't even hold things together for 10 minutes under your circumstances!) is being unreasonable. Inappropriate, unreasonable, and cruel.

But I can understand that you don't want to and can't tell people to screw off because a) you love some of them, and b) you need their help. So I'm going to suggest going on lockdown and only making contact with the bare minimum of people you need to. First, figure out who you can trust to care for the older two kids while your husband's at work. Sit down and be completely honest with them about how you are at the breaking point, the baby needs you, and without their help for the next two months you won't be able to make it through. If they give you any pushback about leaving the baby, ask them in all seriousness if they have any better ideas about how the baby can get the constant care he needs. Either they'll come up with something, or they'll shut up about it.

Second, see if you can find a nursing student or hypochondriac medical hobbyist who can learn to do the tube stuff for the little guy, and who can come spell you for 1-2 hours every day. (You may have to pay for this, but you can probably get the person for the same rate as a babysitter, not a RN.) Then make sure you spend that time with your older two so they still get a little bit of cup-filling from you, even though things will be better in a month or two.

Third, don't talk to anyone else. Let your machine pick up the phone. Or see if your husband will field all phone calls. You've got enough stress and don't need anyone else adding to it, so blow any non-essential personnel off for the time being.

Now, if it were me I'd just play the manipulation card with my close friends and family. If anyone made any negative comments about my caring for the baby I'd burst into tears and talk to them in that jerky, hiccupping voice and "confess" that I was at the breaking point because if I didn't care for the baby he'd die and an infant needs his mother, but I was beginning to wonder if I was a bad mother and horrible person because people were always criticizing me and all I wanted to do was take care of my baby so he didn't die. The recipient would probably be too freaked out to mention anything stupid again. Or maybe they'd feel so sorry for me that they'd volunteer to help some way. In either case, they'd stop saying stupid stuff.

But I don't know if that's your personality. So maybe you want to practice saying, "I'm sure you can understand that I have to be with my sick child during this serious medical crisis" and nothing else. If you don't engage any further they should get bored and drop it. And you shouldn't be talking to anyone but the people you really need to talk to now anyway.

I know there are parents out there who have gone through similar crises with sick children (or multiples with one in the NICU and one or more at home) and can give some support. I am furious on your behalf at the unreasonable (unreasonable!) comments and lack of support you are getting from the people who should be helping you through this. You are a great mother and your children are lucky to have you.

Comments

[Amy]

Well Moxie has given excellent advice on dealing with the asshats in your life who question your need to be with your youngest child 24/7. I just wanted to suggest that during the times your baby is in the hospital you may want to seek out the child life specialist for some ideas about explaining the care your son needs to your other kids in order for them to feel less frightened and more included in what is going on. I used to work with pediatric HIV patients and one of the hospitals I was at instituted a sibling program to help the brothers and sisters of hospitalized kids understand not only the ilness but why mom and/or dad had less time for them. It was actually really great and did seem to help some of the siblings understand and feel more involved. Even if your hospital doesn't have such a program they may be able to help with that.

It sounds like you are doing the best you can in an extremely stressful and difficult situation. I hope your little one is feeling better very soon.

[wix]

dude, i would TOTALLY play the manipulation card, precisely as miz mox suggested, in this case. if anyone's earned a large-scale freakout/public meltdown, it's you, sugar. were i in your shoes, i admit that i would be telling people to fuck off once i sensed a criticism on deck, and would be doing so with impunity.

i think getting a nursing student to help out, or if you can find a parent or someone with crohn's or anybody else who has ever had to deal with a damned NG tube, is a brilliant idea. you may even be able to hook up with a nursing or nursing-student volunteer program in your area.

i have to say that the two youngest will probably come out of this unscathed, emotionally, but if you have extra attention to give to the eldest, that would be a good idea (i know, where are you going to find this time and energy?). i say that because his acting out is angry and aggressive (which is not to say that his acting out is unjustified) instead of garden-variety attention-getting, so that says--to me--that he needs some help working through and redirecting those feelings so that they don't become a genuine mean streak.

[Linda]

Also, in less you have something infusing through the NG tube all the time, you cannot cause death by having it pulled part way out. If you have feedings infusing 24 hours/day, then yes, there is a chance that the tube could come out far enough to dump the continuous feedings into his lungs and cause pneumonia. But maybe that's one thing you can cross off your worry list.

Also, I'm an RN and contrary to what I read in a lot of blogs, we are typically nice people (sorry, my general annoyance is showing, no direct offense intended to anyone here). There might be some nurse friends that you know who would be willing to spot you for a few hours. I've done stuff like that for people I know (for free).

Good luck, I'm glad he's doing well.

[AmyinMotown]

Hell YES to what Moxie said. What are you supposed to do, leave your poor sick little guy to suffer? I agree--don't answer the phone and only deal with people who are going to be helpful. And if you can pull it off, definetly try the guilt-mongering meltdown.

I'll say a prayer for you. My daughter had RSV at seven weeks and wasn't even that sick and I still was just miserable with worry. He'll get better quickly, I promise. She was all better in a couple weeks--I, however, took longer to get over it.

[kate]

MFA Mama - no advice, just tons of sympathy. I can't even imagine what you must be going through. It sounds hellish and scary. I'm thinking of you and Little Child.

[Ally]

Moxie, rock on. MFA Mama, hang tight. I'm so sorry for what your little guy is going through, and the strain it's putting on everyone. You're doing a heck of a job holding it all together.