The trouble with having anything "wrong" with you is that anyone who doesn't have it thinks they're an expert on it.
When we were trying to conceive, that meant that anyone who had ever conceived easily thought they were a fertility expert.
"Why don't you get drunk and have him pull out? It worked for me."
"Have you tried putting your legs up after sex?"
It didn't matter how many times I explained that I could be comatose, my husband's sperm wouldn't swim any better, and yes, I've tried everything you could ever dream of to increase our chances. We have a MEDICAL PROBLEM. THINGS THAT NORMALLY WORK DON'T APPLY TO US. Having conceived a child makes you no more a fertility expert than not having cancer makes you an oncologist.
Now that we are parenting a child with special needs, that means everyone who has ever had a child thinks they know how to solve all of our problems. Well meaning people insist "he'll eat if he gets hungry enough." Never mind that he was literally starving for months on end and no, he most certainly wouldn't eat anyway.
And of course, everyone is certain it's a simple solution. "Have you offered him pudding/ice cream/cheerios/candy/donuts/pretty much anything a normal child would love?" The answer is almost always yes, of course we've tried that. But they just don't understand that it isn't about the food he's being offered. Neither is it about the time of day, or the spoon we use, or what chair he's in. He has a MEDICAL PROBLEM. There are no easy solutions.
He will outgrow it. Eventually. Maybe it'll be next month (doubtful, but hey, a mom can always hope) maybe it'll be next year, maybe it'll be a couple of years. No one has an answer. Believe me, I've asked everyone.
To date, Robbie's seen 3 OTs, 2 nutritionists, a SLP, a feeding team, and more doctors & nurses than I can even keep track of. For once in our lives, everyone agrees on one thing- everything that can be done is being done. It's just going to take time. Robbie is on his own path and he will get there when he's ready.
He's come a long way in the last few months. Three months ago, a "good day" meant he only threw up 5 times that day and he took 5 bites of solid food one time. These days, a good day might actually involve NO puke and 4 oz of solid food. We've even had a day or two where he's eaten 6 oz. That's not every day, by any means. The last couple of weeks, he's been averaging about 2 vomits per day and eating at least 2oz of food each day. Is it "normal?" No, of course not. But for Robbie- it's a HUGE improvement. For me, it feels not just like steps forward, but leaps. Not only can we get 2oz of food into him, but most days, he actually opens his mouth and participates in the feeding process.
Some days it backfires. Yesterday, for example, he was eating some applesauce like he really enjoyed it. He was through at least 2/3 of a container and he was slowing down. He started to turn his head, his way of telling me he was done. I thought "just one more bite" and gave it to him. It took about 3 seconds to realize my mistake. He gagged, and then the vomiting started. Back came probably half of what he'd just eaten. Fortunately it came up pretty easily and didn't choke him or come out of his nose. He didn't panic. If he's going to puke, that's the way you want it- quick and easy.
The worst are the pukes that just won't seem to stop. He can't catch his breath, it comes out of his nose. His eyes widen in panic and his arms flail, seeking help. You grab him and lean him forward, trying to help him get it up and out. He clings to you, unsure of what is happening or why, but needing comfort. Both of you end up covered in vomit.
But "the worst" spells are happening less frequently these days. They're not completely gone, but it's not happening daily, as it was for a number of months. I suspect the infrequency of "the worst" is leading to his improved eating. He's slowly starting to trust food... a little.
Drinking still isn't going well at all. Even a drop of milk on his tongue cues gagging. It's clearly a negative association, not a texture issue. He'll sip water from a sippy cup or more preferably, from my bottle or cup. Not enough to stay hydrated- a few mls at most, but still, it's something. He can swallow liquids, he just chooses not to.
I can genuinely look back even a few weeks and see the improvement, though. It's encouraging.
And I think that's part of why my feelings were so hurt when my MIL made a proposal to me last week.
I knew it wasn't going to go well because she started with "promise you won't get upset." Anything that starts with those words is pretty much guaranteed to upset you. This was no exception.
Basically, she wants to come stay with us for a week. That part is fine. I actually really like my MIL and she's really great with Robbie. She's a huge help when she's here, and is very rarely pushy or opinionated on any subject. She's a good listener and respectful of our decisions.
But then she went on. "I want spent the week working on his feeding and get him off those tube feeds."
I was confused. You think you can get him off tube feedings in a week? And I said as much. I told her she was more than welcome to come visit, but I wasn't sure what she thought she could do in a week that we, and an entire team of doctors and therapists, hadn't been able to do in a year.
"I just want to try."
Okay, fair enough. I told her she was welcome to try, but truly, not to get her hopes up because even if she could get him to willingly take as much nutrition by mouth as he requires, getting him to keep it all down is pretty unlikely. We have to run his tube feedings in very slowly to keep him to the minimal amount of vomit.
But she continued "well, I can be there all day to feed him every couple of hours." I explained that he's already fed every couple of hours. Then ran through his daily feeding schedule. She seemed surprised "Oh. I didn't know daycare would do that." I don't know what she thinks happens at daycare, but all the kids get breakfast, lunch & snacks. I added that I was home with him all day for more than a year and it still didn't make a difference.
And then she said the words that keep running through my mind. "Well, I can have the patience to get him to do it."
She. can have the patience. to make it work. You see, that's the problem. That's the reason he doesn't eat. It's not that he has a medical problem. It's not that he throws up a lot or was in pain for so long. It isn't a sensory issue that commonly plagues preemies. It's nothing to do with Robbie at all. It's because we... because I... am not PATIENT ENOUGH to feed him.
I tried really hard not to be insulted. Not to be hurt. Not to be angry. I was fairly quiet on the phone, really unsure of how to react to that. But after we hung up, I replayed the conversation in my head numerous times. And every single time, I got a little more hurt and a little more angry.
I'm used to people questioning if we'd offered him something tasty to eat. Surely if something tasted good enough he'd want it, right? But to imply that I'm just too impatient to feed him? I'm honestly just floored.
I keep trying to remember that my MIL would never upset me on purpose. She wouldn't. She's truly a good person. But when you have a car wreck, the victim's car is no less crushed because you hit them on accident. And my car is crushed.
I try to remember that me being lazy or incompetent would be easier to fix than Robbie having an actual medical problem, so it may be preferable to believe that. But I just can't be okay with being accused of not being patient enough to get him to eat.
And not just me. It's not as though I'm the only person who can't get him to eat or drink. Again, he's seen many "experts" and there's daycare, too. The daycare seems to be adept at getting the other children to eat. But we're all just too impatient to feed Robbie?
So I've been seething. As time goes on, my hurt is waning, but my temper is rising.
My husband laughed when I told him. "Let her come and try then. She'll see." And my first reaction was similar. She thinks she can ride in on a white horse and fix my fuck up? Let her.
But then I think about her trying to feed him all day. Trying to force food on him. I think of yesterday when I thought "just one more spoon" and then all of the vomit. I think of the look on his face when he reaches for me when he's gasping for air while emptying his hard-earned stomach contents all over himself. I think of how hard we've worked to get him to trust food just a little.
She insists she "just wants to help" and "just wants to DO something." But what if that something, that "help" sends him backward?
I don't think she would intentionally do so, of course. And I do think after a few rounds of panicked puking, she would quickly realize her mistake. And who knows, maybe she could make some progress. Maybe some focused effort on liquid drinking, for example, would help.
Ironically, patience is key. You can't force him, or you just end up with a crying, puking, food & drink refusing child. It's only through patience that we've come as far as we have.
And I truly don't think it would take her long to figure it out. She's not stubborn enough to push the issue just to be right. But I fear the damage will be done before she realizes it.
So I really don't know where to go from here. David wasn't much help on the issue. At first he said to let her come and figure it out herself, then said to tell her she can't feed him at all. Neither are really options. The former, I've already explained, the latter because she'll be with him all week- he has to eat at some point.
And David isn't one to negotiate things. He always says "you're the one with the problem, you handle it." So for now, I'm just licking my wounds and deliberating my options.
So far the only one that seems appealing is to pack our things and run away. If only I could find a commune full of families with non-eating children.