Friday, February 5, 2010

Suggestions

One of the most annoying parts of parenthood has nothing to do with children. It has everything to do with what seems like everyone else. It's the suggestions. Whether it's your sister who thinks you should cloth diaper or your mother who doesn't understand why you want to breastfeed, your grandmother who suggests cereal in the bottle to make your baby sleep better or some nosy stranger who accosts you about "poisoning" your child with formula, every one has an opinion. It doesn't matter how well-researched you are, how many children you've had before, or what special considerations your child might have, every one seems to think they know the right way to raise your child.

I've experienced it in hundreds of normal and not-so-normal ways. Sure, I got the judgy comments about my insistence on feeding Robbie breast milk and have endured probably dozens of helpful suggestions about getting Robbie to eat, sleep, talk, walk and whatever else it is that people think they're experts on. And I'm certainly guilty of it myself. When I see an 18 month old child sent to daycare with a sippy cup full of ice tea every day, I judge. I'm not quite so ballsy as to say something to her parents, but I do make a mental note of disapproval.

For us, it started immediately. When Robbie was born, no one asked us anything, really. They whisked him away to the NICU after letting me kiss him on the head for approximately 3/64 of a second. That was as it should be. They clearly knew more about what he needed in that moment than I did. I didn't know an ET tube from a bicycle pump, let alone understand oxygen saturations, apnea spells, brain bleeding, ROP, cold stress or any of the other hosts of concerns we had about Robbie at birth and shortly thereafter.

When they wheeled me down to the NICU to see him- hospital bed and all- I felt so overwhelmed and powerless that it really defies explanation. Nothing can ever prepare a person for seeing their child so small and fragile that you can literally see through their skin. There is no photo that could capture the intensity of his frailty.

I wanted to take care of him, of course. But I was literally scared to touch him. The first time a nurse invited me to touch his hand, I shook my head vehemently, then burst into tears and cried out, "I'm so scared to hurt him!" He looked as though even his mother's most gentle touch would tear through his paper thin skin.

Thus began a long journey of listening to other people's advice. The nurse was kind, but firm. "Don't be afraid. You won't hurt him. He needs to know you're here. Just touch your finger to his hand." My stomach churned with nerves, afraid that I wasn't a help to him as a mother should be, but instead a threat to his very survival. My body had already betrayed him once, what else would I do to hurt him? But I touched him anyway and she was right. He needed to know I was there. And I needed to feel that he was stronger than he seemed.

In the following weeks, the nurses would teach me how to change a diaper around tubes & wires, how to take a temperature, when an alarm was bad and when it was just a wait-and-see. Doctors would cycle through a few times a day and talk to me about nutrition and reflexes and brain development. The therapist would tell me when he was old enough to have a massage, to suck on a pacifier, to try to learn to eat. I took it all in. My contribution to his care was milk, clean laundry & love. Even those contributions were doled out under the direction of the experts.

As time passed, though, a slow metamorphosis would take place. The "experts" offered less advice, and I asked fewer questions. Instead of waiting to be given permission to hold him, I simply opened his isolette, adjusted his tubes & wires and held him. I knew what he needed and when. Part of me kept waiting to be scolded, to have him taken from my arms because I was doing it wrong, but the scoldings never came. Robbie stabilized more and more and both the nurses and I became more confident in my care for him.

The closer we drew to his due date, the more assured I became. In many ways, this was a great thing. Certainly, not being scared to break my son was a plus, but there were draw-backs as well. Gone was the blind adoration for the people who were saving my son's life minute to minute. Oh yes, I still appreciated them. Some I still adore to this day. But I also started to focus more clearly on Robbie, specifically. The neonatologists may be able to tell the differences in the brains of a 32 weeker and a 34 weeker, but I knew which way Robbie liked his blanket folded so he could sleep. I knew that even though he loved to be swaddled, if you bound his feet while he was awake, he'd thrash until he broke free and could throw his leg over the end of his Snuggli. I knew that if his saturation dropped while he was being held, he just needed to be suctioned, not that he needed his oxygen increased.

By the time we were ready for discharge, I joked that they were kicking us out not because Robbie was ready to go but because they were sick of me. I'd gotten too comfortable and was becoming particular about things, so we had to go. It was apparently to all involved that Robbie was best in the hands of his mother, not the "experts."

Of course, the advice of experts wouldn't end with our NICU discharge. We still had a pediatrician and a GI specialist and several therapists, plus the NICU follow-up personnel, and any number of other medical professionals guiding our choices. This was good, I think. Even had Robbie been a more typical baby, I had no idea what I was doing. Most new parents don't, even if they have a ton of child experience under their belts. The inauguration of parenthood isn't something you can really prepare yourself for. There is no training the readies you for 3 hours of sleep in 4 days while covered in vomit and still managing to sing lullabies over the sound of a screaming, overtired infant. And I wasn't just trying to figure out how those damned footed sleepers snap up, but how to get a child whose stomach was trying to escape out his throat to eat enough to live on.

We started Occupational Therapy early. We were hoping to teach Robbie to nurse, so even before he showed any delays, Robbie's OTa, K, came by once a week to work with both of us. I clung to those visits for more than one reason. Obviously I hoped they'd work and Robbie would nurse, but K was often the only other adult I got to talk to that wasn't my husband. When she was here, I had an hour with my hands free. She would let me take a shower without having to arrange the apnea monitor under the bouncy seat in the bathroom. I could pump without trying to simultaneously control both my breasts, two bottles and soothe a cranky baby.

K is also a mother close to my own age and one with whom I share a number of parenting ideals. It was nice to bounce ideas off of her and to laugh about the funny things the kids did. Even when she had no advice, just the reassurance that "Robbie looks good this week" was very comforting to me.

When Robbie started falling behind in his milestones, we added more therapy. First PT with J, then developmental therapy with C. We even briefly saw the world's most useless nutritionist. All came with their own suggestions and advice and I welcomed all of it. (Well, except the nutritionist. Seriously. She brought NOTHING to the table.)

Time has passed. Robbie has been under the supervision of therapists and other experts essentially since birth. We've been receiving at least weekly (usually bi-weekly and sometimes tri-weekly) visits from these experts for nearly a year and a half. And unlike the well-meaning but often misguided and unwelcome advice of sisters, friends, grandparents and strangers in the grocery store, the advice given by these experts is required. They have to come to our home and size Robbie up each week.

Each week they leave a report and note the progress he's made from the week before, what they worked on that day, how Robbie responded to therapy. As I'm working full time again, the therapists usually go to Robbie's daycare and discuss their observations with the daycare providers and I am kept in the loop with the written reports and telephone and email conversations.

For a long time, I've really appreciated their supervision. What did I know about internal rotation and trunk weakness? Or tongue thrust and gag reflexes? Sure, I knew Robbie wasn't crawling at 9 months old, but I never would have thought to assess the strength of his neck when he leans to the side. I was grateful to have the experts at my disposal.

But.

But now we've been at this a long time. And while I'm not a motor skill expert by any means, I most certainly am a Robbie expert. Not that I know everything- I most certainly don't. But when my daycare provider mentions that Robbie's physical therapist disapproves of the length of his hair, I know that's out of the scope of her concern. I think I can manage Robbie's style without any suggestions from the experts.

What I'm finding is that I've reached the point that I reached at the end of our NICU stay. I'm more particular now. I know enough to know the difference between good advice and bad, to understand that just because he has thrown up more lately doesn't mean his medicine needs adjusted, it simply means he's had a cold which always causes a temporary flare up of symptoms. I may not be able to name the muscles in his arm, but I know what to put in front of him to entice him to extend them.

The trouble comes because while I'VE reached a point where I'd like to kick all the so-called experts out of our house and just live our lives, I don't want to deprive Robbie of the benefits of therapy. Even the therapy that I'm not sure is helping, I don't want to selfishly discontinue it and find that Robbie really was benefiting more than I know. I'm not willing to risk his progress for my possessiveness.

So we continue on as we have been. I will make more phone calls and write more emails. I will disagree with more recommendations, defend more choices. I will seethe quietly (or maybe not-so-quietly) when one of them oversteps. I will go forward confident in the knowledge that I know Robbie better than any one else. And if you suggest a barrette for his hair, or tea for his sippy cup, or that I just let him starve until he's hungry enough to eat, I will respond with my own suggestions. What you do with them is up to you. I'm an expert in Robbie, not an expert in blowhards. You'll have to figure out your own best path for yourself.


--Trish

15 comments:

Meghan said...

Great post!! We've had Sweetness in PT since she was 4 months old (which I don't really blog about for some reason) and the stupid advice I get from people (mostly my mom of course) drives me insane! I can't imagine all the different levels you must get it on. Good job standing firm and knowing what is best for Robbie

Sherry said...

Wonderful post! I think I'm just about at the same point as you with the NICU. I have to laugh about the hair, that is just too funny!

twinboysmom said...

I can't believe they mentioned his hair!!! That is NOT what they are getting paid to do! Sorry it is getting so hard! He is so cute by the way!

The Turner Family said...

Love it! 'the sippy full of ice tea' made me laugh out loud. I have sent more than 1 disapproving glance at a toddler drinking tea and/or coke.

Oh, and the comment from the therapist about the hair- TOTALLY uncalled for...so sorry that you had to deal with that!

About Andy & Tina said...

Great post Trish! I feel like this often with our therapists. We have been seeing them for 15mo, and it seems that Lincoln will figure stuff out on his own, or he won't.

And I have to admit that I often give Lincoln sips of soda to encourage him to drink out of a straw and develop that skill. And the OT has recommened putting something tasty in a sippy cup to ecourage him to pick it up and drink out of it. So don't be too hasty to judge those daycare parents you mentioned, they may have a good reason for the iced tea... :)

Big hugs, and good job continuing to be a great advocate for Robbie!

wrensmommy said...

dude- you rock my world... this is one of the best posts ever. i was going to write something similar- but instead i think i'll just link to yours.

i'm not quite there yet- but i can see that point around the corner.... the way you explained the nicu experience was spot on.

Trish said...

Tina- believe me, I know. If tea was the magic thing that would make Robbie drink, he'd get it. The girl at daycare just has ...uh... well.. interesting, parents, shall we say.

The tea thing was actually sparked more by my mother in law trying to give him tea at least 4 times last weekend and then acting like I was being ridiculous when I said he didn't need it. (She was trying to drip it in his mouth from a straw.)

Stacie said...

Amen, Trish! I am SO with you on this.

I have a love/hate relationship with the therapies we get (both PT and OT). For Ja.son, I don't think it matters one bit what they try to do with him. He will do what he will do. With Sh.awn, he's following his own learning curve, not that far behind Ja.son's, and will also do what he wants when he's ready. The only thing I truly think is helping us is PT.

BUT, I can't bring myself to stop it...just in case.

I welcome their ideas for the most part. I take what sounds good to me to try and then turn a deaf ear to the other junk they say--because I am the mom, not them. And because as you said, we are the experts when it comes to our children!

Hugs, Trish. Robbie is one lucky little dude. :-)

Becky said...

Amen

Amy said...

Great post!

Me said...

Everything you said makes sense to me!

Azaera said...

Once again you brought me back to Skyler's first few months in the NICU. The wires, the beeping, the realization that experts knew lots about preemies in general but not MY preemie. Which was compounded by them telling me that they couldn't figure him out and that he was "a puzzle" as they put it. I agree completely about the advice thing. I tire of those people who know exactly how to raise my child, or "cure his blindness". Sigh.

Georgy said...

Its as if I could've written this myself, although not as well as you did; especially the NICU experience.

Heather said...

Wow! Great post! You brought back a lot of NICU memories for me. Our last twin that was in the NICU they actually sent home because he was eating better when he was with me, nursing than he was by the nurses giving him bottles. I proved it to them, by going to the hospital for a full day and left his twin brother at home with my SIL to fully take care of my little peanut. He ate like a champ every three hours, which was more than he did "on demand" with the nurses. They didn't realize how laid back he was about eating. He'd not cry to eat until he was good and starving and by then he'd be too tired to eat a full feed and doze off after eating enough to keep him from feeling like he was starving. He kept dropping weight and the doctors and nurses couldn't understand why. After spending the full day with him again 5 days after his brother left the hospital, and he gained weight that day, they decided to discharge him with me the next day because he thrived more with me.

We also have therapists, but only every other week for each of the boys, so it is every week for us, LOL! They notice things that I don't notice and my little peanut doesn't roll unless he's asleep while his brother is all over the room by rolling and acting like he's ready to crawl. But I don't worry about my Liam. His sister was a late bloomer too. She didn't crawl until she was 11 months and walk at 15 months and she didn't have being premature as an excuse. She's 9 years old now and has been figure skating for 5 years. So milestones, schmilestones.

Anonymous said...

hello all

I just wanted to introduce myself to everyone!

Can't wait to get to know you all better!

-Marshall

Thanks again!