Sunday, October 11, 2009

Experts

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.

"Just relax."
"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.

--Trish

18 comments:

Tasha said...

Come join us!

All joking aside I would honestly tell her no. She could very possibly do much more damage than help with Robbie. By force feeding him she could very possibly intensify his aversions and gagging. She needs to trust that he has parents who love him and are trying everything to help him.

Like you said it, what is she going to solve that a whole host of dr's and therapists could not? You cant "love" them into eating. However, we do have a kiddo with very similar problems so we do understand it much better than the average person.

Sigh. Why must we as preemie parents always be doubted in our abilities with raising our children? I just don't get it.

Tasha said...

Come join us!

All joking aside I would honestly tell her no. She could very possibly do much more damage than help with Robbie. By force feeding him she could very possibly intensify his aversions and gagging. She needs to trust that he has parents who love him and are trying everything to help him.

Like you said it, what is she going to solve that a whole host of dr's and therapists could not? You cant "love" them into eating. However, we do have a kiddo with very similar problems so we do understand it much better than the average person.

Sigh. Why must we as preemie parents always be doubted in our abilities with raising our children? I just don't get it.

Rachel said...

I vote for running away.

It is sweet that she has offered to help, but quite seriously any help must start with the understanding that YOU are the loving and devoted mother who has overseen Robbie's care every single day of his life. If she comes into your house criticizing your care than it's going to be hard for you to guide her with the work that needs to be done everyday.

PurpleDogMommy said...

Oh my word.

I felt my hackles raise when I read what your MIL said. Ummm, really...cause you know, you aren't her and you can't do what she can. She's magic, you know.

*eye roll*

I'm with the other posters, I don't want to see ALL that work you've done, the work Robbie's done, to go down the drain, simply to satisfy a well-intentioned, but potentially harmful, ego. I'm new to your blog, but I read ALL your posts. Yes, your MIL is better than most...but she's still a touch on the arrogant side, she just doesn't know.

Basically, women that didn't have special-needs kids, just don't get it. My daughter has had food issues since she was born. I don't struggle the way you do, but I've sat crying when she won't eat and is crying because she's hungry. Every meal in this house with her is a battle. I dread it, I really do.

So, the other folks, their hearts are in the right place, but they have no understanding. She didn't have these challenges, you do. Her wanting to help is truly admirable and maybe a try at feeding would snap her out of it.

But honestly? One time of her forcing "just one more bite" in Robbie and him vomiting it all up and putting him through that panic...well, I don't know that I could knowingly do that. I'm betting you can't either. It would hurt my heart to see him suffer through that, when I knew that it was entirely possible that it would happen. Yes your point might be proven, but it's not fair to Robbie to have to do that.

So I can see your problem. You may have to flex your "mom" muscles and let her think she's the best thing since sliced bread...all the while knowing that YOU know your boy better than anyone else on this earth.

Sorry for the diatribe, I was just feeling your frustration. Keep us posted on how it goes and what you decide to do, girl.

not the bella vita said...

Wow. She is seriously out of order, and you have every right to be seething. Yes, she has good intentions, but she's completely wide of the mark here.
As previous posters have said, she could make things so much worse. I mean, my son doesn't have any of Robbie's issues and I worry about leaving him with my MIL for meals because they used to force their kids to eat when they didn't want to, and I don't want our son to go through something like that. But Robbie? I would have to insist she watches me feed him and does the exact same thing -- stops when the child is ready to stop.

As an aside -- I used to be one of those terribly annoying people who have opinions on things they're not exactly experts on. Wow, pregnancy and parenthood have beaten that right out of me. To each their own, everyone's an expert on their own child only.

Good luck Trish, and FWIW, you are an incredibly patient and devoted mother, and your blog is a testament to that. Take care!

Adriane said...

I agree with the group - I'm afraid she could make things worse for Robbie. Not intentionally, of course. What is with everyone and them thinking that THEY hold the magic freaking pill to getting Robbie to eat solid food? You are doing (and have done) such a great job with Robbie.

Beth said...

I agree with everyone else. She could really make things worse. Can you talk to your doctors or therapists for their opinions? I am betting that they would say "no" to this, unless your MIL agrees to be taught how to feed Robbie the right way.

I certainly understand your frustrations and am sorry that you have to deal with this. People say the same things to me about why my 2 year old won't eat - "have you tried ice cream?" is my favorite line. I think people just have no idea what it's like. It doesn't make it any easier to hear. And I think her intentions are good. But you are the mom and know him best and you have to stick up for him until he is able to do it for himself.

Good luck and hang in there.

Leah said...

Your first priority is, and has always been Robbie. You KNOW that she can not swoop in and fix this. And if she tries it will be at HIS expense. That is what she needs to be told straight out. She wants to be the hero but she is basically throwing her grandson under the bus...just so she can feel better about the situation. Trying to fix this is about her...her being able to make it work. This has nothing to do with Robbie. You seem to have an open and honest relationship with her and maybe you could just tell her NO. Yes, she can visit, but NO you may not try to feed him all day. NO you may not see if patience prevails. NO you may not cause him to vomit until food comes out of his nose. It's terrifying for you but especially for him. I truly hope that you can tell her how it is. Unfortunately your husband won't tell her to back off and you have to do it. You've come way too far and done way too much to have her ruin it. Want me to call her? =)

Me said...

I have no advice. I will say thought that I would be offended too. Superiority complexes get me every time. :p

Trish said...

Thanks for the support, everyone. I'm still waiting for the inevitable "anonymous" comment where I should get over myself. *LOL*

Leah.. yeah.. let me get you her number.


I think what I've decided is to tell her she can work with him on taking liquids, but his solid feeding is to stay the way it is.

Since he's not taking any liquid at all, she can't really fuck that up. And realistically, he's not going to take enough liquid by mouth that she's going to make him sick. (I would seriously fall over dead if she got more than an ounce or two into him in a day.)

That gives her "a purpose" but also minimizes the damage she can do.

Surely that seems fair, right?

--Trish

Jen said...

Hugs.

Laura said...

I can say from first hand experience that this situation has been a problem for me on a daily basis. My mother lives with me and is helping me with the boys 24/7 and she has been through everything from day one and still says that she thinks the OT's and Dr's and everyone are full of it and their methods are ridiculous. She lives with me and still feels this way. And having her around 24/7 just hampers my parenting style because she has her own ideas on how to do things and is not nearly as in tune with their reactions to things nor does she think in the same terms as you or I do about the big picture. So my vote is to thank her very much but you're his mom and you're doing everything anyone can do already, and doing it pretty damn well because you've had some major successes recently. It's not worth the potential for a set back at all.

Two Hands said...

Trish.
I'm seething.
Like.
Really seething.
I could go off on a huge rant right now and use all the cusswords I've ever heard in my life, but it won't do a lick of good.
One of my children has a bit (minor, really) of a problem and I recently got assvice from someone who has met her twice.
What I wanted to say to her is: "I'm her Mother. I can assure you that nothing is more important than her health and that everything is being done. Thanks for your advice, but we know better than anyone what she needs."
I can say that to your MIL (with the appropriate modifications of course). If it doesn't work, I'll just reach through the phone and shake her a bit (just kidding).
I'm truly, truly sorry. You are, hands down, one of the most patient, concerned, dedicated and passionate parents I've ever known. You leave no stone unturned, no method untried. God put Robbie into THE BEST hands.
Sending you love.

Azaera said...

I think your solution Trish is the best one. Let her do the one thing she can't screw up on. And if she wants to watch -you- feed Robbie then she can see just how patient you are.

I hate how the whole older generation thinks they know better than us. It's total BS. My son eats really well but isn't gaining (because of his hormone problems) but C's family is always making cracks about me not feeding him and thinks we should give him a plate of french fries(and he's not even 1 yet!). Yeah that will fix his lack of thyroid hormones. Ugh. Just like putting glasses on him will magically cure his blindness. NOT.

Kathy said...

I don't have any real advice for you, but I'm sorry you have to deal with this. I have no experience with what you're going through personally, but a good friend of mine has a child with food issues and I've witnessed their struggles. Her son was born premature, but he also had several birth defects including the fact that his esophagus was not connected to his stomach, so he literally could not take anything by mouth.

He spent the first 10 months of his life in the hospital, most of it in the NICU and had many surgeries to correct his defects. He was tube fed for a long time and as a result had sensory issues/oral aversion.

He's 4 now, and still has some issues with eating, but they've come a long way. I remember how frustrated she would get when people would make those same type of comments to her. Once she finally got him to take 2 bites of ice cream and she was thrilled. Two days later he refused ice cream, and she said she would have fed it to him 3 meals a day if it meant he would eat.

People mean well but they don't understand, and they end up hurting other people in the end. I'm sorry she hurt you. If there is anyone on this earth who would be invested in his well being and willing to do whatever it meant to help him it would be you, right?

chris said...

I know everyone is enjoying bashing your MIL but she is only trying to help. she is not trying to upset you on purpose

Trish said...

Chris, I don't see anyone bashing her at all? Can you point out the bashing?
And I, and a number of commenters, recognized that she's not intentionally being hurtful. But just because she didn't do it on purpose doesn't make it not hurt.

People say a lot of dumb things they don't mean to be hurtful- often trying to be helpful- but they still hurt.

If your husband told you you're ass was getting big, it might be true, and you might even want to know that, but it doesn't make it feel any better to hear.

And in this case, a little common sense would have kept this at bay. If it could be fixed in a week, we wouldn't be where we're at now.

cindy said...

Hi Trish - I think you are a great mom and will know how far to allow your MIL to go with "helping" so it doesn't hinder Robbie's progress.

That being said, anyone (including your MIL) who feels like they can pop in for a week and save the day or who wants to come and try their food experiments for a week just to give it the "old college try" is not listening to you very well. Sounds like she has nice enough intentions and is a good person, but it is such a personal thing - parenting, feeding your child, getting nutritrion to your child, taking care of your child in the best possible way, it is a bit insulting for someone to think all it will take is for them to come for a week and fix it - even after they know all the countless hours you have spent and professional people who have tried. Like what if she was talking about your infertility instead - i.e. "Well Trish, I know you both have tried every possible way to conceive, but why don't I pop in for a week and hang out in your bedroom and offer suggestions while you two try?" Ewww - sorry! Now you wouldn't want that I'm sure! Lol - perhaps an extreme comparison - or is it? To me so much of parenting is so very personal & should be just between the Mom and Dad - it's tough enough sometimes to need all the developmentalists and other experts to help you parent (Mom of a 24-weeker, so I know the drill) when most other parents are just out there able to go it alone and discover their own way. But to have someone think they can swoop in for a short period and do better than you have done with all your efforts, time, sleepless nights, research, experts, etc. - seems a bit overconfident of them for my tastes. Good luck with what you decide and trust your gut - you're the mom! Hugs :)