Thursday, January 15, 2009

I lied.

So I am going to talk about it.

He won't eat. It's worse and worse. I am struggling, struggling, struggling to get food into him. If he won't eat a bottle, I make him cereal.

Today I fed him with a syringe until he gave up and started spitting that out, too.

I'm a mess all the time.

David just found me in the bedroom- syringe in hand trying to feed him 1/2ml at a time, dripping drops and sticking his paci in his mouth and bawling my eyes out.
Robbie had finally stopped crying from hunger. He was busy wondering what the hell was wrong with his mommy.

Tomorrow I'll call the pediatrician and get the referral to the surgeon.

I have so much guilt about it that it's eating me alive. Another hole in my baby. My baby who should want to eat. Normal babies want to eat. They like it. They suck the skin off their mom's boobs. They wear silicone nipples out. Not mine. Mine occasionally accidentally sucks on a bottle and when he realizes he has food in his mouth, he spits it out.

It doesn't matter what bottle it is, or what consistency the milk is. Or what flavor. He doesn't want it. I don't know why. He doesn't seem to be in pain any more. But I think too many months of pain have made him hate it.

And no one can help us. I swear they all make shit up. No one know what to do for him. I think they just come over to visit and try to give us false hope.

I don't believe they can help. I think when he decides to eat again, he will.

I'll persue all the avenues to help him. but in the mean time, he's STARVING.

To hear your baby crying because he's hungry is the most excrutiating sound in the world. There is NOTHING I can do to fix it because he won't let me. And he's just a baby and doesn't understand.

So I give. I'll put him through pain because I can't figure out how not to.

I'll never forgive myself.



Michelle said...

Please stop taking this all on yourself. You are doing everything you can and then some. You are an excellent mom and you know what? Sometimes that's not enough. And it sucks. It sucks when we can't protect our children, when we can't fix them or make it better. But with the help of medical professionals you ARE making it better for him. It's an amazing world that we live in where these options are open to us. We're very lucky and most importantly, he's very lucky to have you.

Stacie said...

Oh, Trish. I am so sorry that feeding is still so hard. You are a wonderful mom and advocate for Robbie! You have nothing to feel guilty for (although I admit that guilt is a powerful emotion that tends to stick around for a looooong time).

This is not a failure. This is hopefully going to make it better! If feeding is always a struggle, it makes him so upset and you so upset, maybe this will be the thing that makes it better. He'll grow, you'll be able to enjoy spending time with Robbie without having to worry about him eating all day and night long, and he'll grow nice and big!

Sending love your way. You are doing everything you can and you are a great mommy.

Alice said...

Girl, I'm just sorry. Sorry you've had all the struggles and even more sorry to know that they're far from over.

Feel guilty. Feel crappy. Feel horrible. Accept what you are feeling is called mommy guilt. And wallow in it a bit. Rub it right into your skin. Bathe in it.

Then recognize that no matter what, you are awesome. Robbie is (with the exception of eating) thriving. He's smiling. He's happy. He LOVES you!!!

And that, we all know, is worth it.

I'm sorry he'll have surgery. But I'm very hopeful that it will do the trick! Let's get some weight on that boy and kick mommy guilt aside - you ARE a good mom.

Plain and simple. You are a good mom. And Robbie loves you.

Hang in there kiddo. And keep us updated with what the surgeon says. (((HUGS)))

Heidi said...

This is not your fault.

Do not blame yourself.

You are a wonderful mother. Proof? It is proof enough that you are so upset by this, would a bad mother be upset? Nope.

Robbie is one lucky little boy to have an advocate like you fighting for him, making sure he gets everything you need.

(hugs for you)

Tom & Shannon said...

I don't even know what to say, except that I'm so sorry you and Robbie are going through this. **hugs to you both**

Doreen said...

Hey, I've been reading your blog for a while, and I just had to comment. Please do not beat yourself up over this! It's not your fault! You are such a wonderful mom, and advocate for your baby. He had a rough start, and for that, he's doing amazingly well. Please don't forget that. To be quite honest with you, I'm surprised that the doctors decided to take out his feeding tube in the first place, as it never seemed like oral feeding really was well established. It will be good for him to get the calories he needs without the daily struggle. And good for you, as well. It'll help you be able to spend more time playing with him, and work on solid feeding. Often, that comes more easily, and maybe he'll even take to a cup with time. Don't get me wrong, feeding tubes can have their own issues. I have a friend who has a child with a g-tube, and to say it's a walk in the park would be a lie. She's had issues with clogs and stuff, and has lost an occasional feed due to the tube somehow coming undone. And trying to have a mobile baby sit still long enough for a feed can be a challenge, too. I do sincerely hope it will help, though. Your current situation is just so sad, I can read the pain through your posts. Hang in there, it WILL get better! My husband's cousin has a baby with a heart condition, due to which she's had to be tube fed, as well. She still won't take liquids orally, but is doing wonderfully with solid foods (she's almost 11 months). Hang in there, and know you're not alone in this struggle. Keep up the good work!

Anonymous said...

Trish - this is NOT your fault. You have nothing to feel guilty about though I do understand how you are making yourself take this on. But please don't. Again, this is NOT your fault - AT ALL.


Maureen said...


You are not to blame for this. Robbie is doing wonderful apart from the eating. Hopefully this will allow you to enjoy him more. Time goes so fast that it is a shame to miss enjoying anything of it. Of the kids that I know that have/had g-tubes, pain was not really the issue for them (clogs, pulling out the tube, sitting still for feedings, getting the right formula, exc those were issues, but not so much pain). I hope it gets put in soon.

camille said...

You've got to be easier on yourself, Trish. You're doing everything you know to do! You've gotten opinions from other "professionals" and their suggestions aren't working. The bottom line is he needs to eat and you need to do whatever it takes to get him to that point. If that's surgery, so be it. For a lot of Connor's infancy, I had to keep repeating to myself, this too shall pass, it won't be like this forever. Robbie will eventually get off the tube and will eat. I hope that day comes soon soon soon. Thinking of you.

Me said...

Trish I'm so sorry that this is so hard for you and your son... I wish there was something I could say or do to make you at least feel better...

I know you're doing the very best that you can.

Intrepidgirl said...

You are not a failure and it is not your fault. You are doing awesome given the circumstances. I would have folded a long time ago and I probably would have had to have been committed. You are very strong.

Every mother wants to feed their baby so it's heart-breaking that you both have to struggle with that experience. Really, you are amazing! My goal as a mother is to be able to say I did my best. You have done that and more. Be proud of yourself.

Aidan's mom said...

Awww Trish... Hugs girl.

I have been there with the syringe thing (I'm ashamed to admit) but it was when Aidan was much older and I decided just to go to a sippy cup and whole milk and magically it worked.

I have seen other preemie moms try everything under the sun just to get their child to eat. It is so painful to go through eating issues.

I think it just speaks to something basic about being a mother...being able to provide nourishment for your child. It is something most parents take entirely for granted. And then we as preemie moms, who have had so much of the normal mothering experience taken from us already, feel further beaten and battered by the feeding issues. I remember feeling like I just couldn't do anything right as a mom.

But the bottom line is that feeding issues are the SINGLE most common issue that follows preemies home. You are not alone, though most nights as you try to coax him to eat it must feel like it.

You are doing what you need to do.

Hugs darlin. It will be ok. And that is because you are looking out for Robbie. Cuz that's what moms do.

Anonymous said...

I just deleted my comment telling you it's not your fault, etc.. etc..

I just want you to know I'm thinking of you and your Robbie and wishing and hoping the best. And sending "EAT BABY EAT!" vibes your way.

You are an amazing mother and nothing changes that.

Heather said...

I think you are doing the right thing. Please do not beat yourself up, you are doing everything you can. Have you ever talked with Stephanie Wilder from ? One of her twin girls recently had to have a g-tube put in (Sadie was only like 14lbs at a year!) Anyway, she's blogged about it a lot and it might help some.

Sending Hugs and Prayers your way.

Laura said...

I am so sorry. And it saddens me that so many of us struggle and then have to go out in the world and see these other kids and parents who can't possibly understand what we go through every day. I just spent two hours feeding one baby, and an hour feeding another and combined they at a total of 6oz and they are 9mos old, 6.5mos adjusted.
But from the research I've done and a good friends personal experience with having the tube put in her son, and my Nestie friends who've gone through the procedure, I've come to understand something. I think that at some point pain for one thing, as much as you hate it, is better than continued pain for another. The lesser of two evils, that once you put it behind you and get through it all you will be relieved that it is done because he will be able to eat and in time he will learn to eat like other kids. You are a great mom. I'm glad you posed this. Get it out. You help me by posting your experiences and feelings and I hope that I can help you by comiserating and sharing what we go through to help us all get "there", that magical place where the bad is all in the past. Hugs. Laura

AngelsAmid said...

You're an absolutely amazing Mom and I know Robbie knows you love him. You're doing the best you can and that's all you can do. Though I'm sure hearing him cry like that is excruciating for you and I'm so sorry (hugs)

Tracy said...

If only your will and determination were enough to make Robbie eat. Don't beat yourself up. You've done an amazing job thus far. You're an amazing mommy.

Cheryl said...

Stop blaming yourself. This sounds like what i best for him. He will be fine. :)

Anonymous said...

Oh, honey, huge hugs from me. Get Robbie the nutrition he needs and you the peace of mind you need and the rest can come later. Sending you much love,

- dr. girlfriend

Laura said...

Because I can't thank you enough for being so supportive for me. Hugs!
You have an award waiting for you here:

El said...

Trish, I've not commented before, but I know all about mommy guilt. I have a Robert, too. One of my sons, Robert Elias (Eli) was stillborn. He would be turning two in March. I regret so many things I did and didn't do, thinking maybe if I had changed one thing, he would be here.

You are a great mom. You are an amazing advocate for Robbie and you are taking care of him the best possible way you can. You are trying everything you can, starting with the least invasive. You have exhausted those efforts, and that's ok! The important thing is that he gets nourishment, and at this point it needs to happen however it needs to happen.

You are a wonderful mom and you are doing all the right things.

Hang in there.


Heidi said...

Oh Trish, I am so sorry, but you can't blame yourself. You are an amazing mom, really. I wish I could reach through the screen and give you a big hug. You and Robbie are in my thoughts.

JDD said...

Trish - this is not your fault at all. You are a wonderful mother. You did not fail at all. Robbie loves you and you are doing what you think is best for him. ::HUG::

Valerie said...

Hang in there, Trish. You are the best mom that Robbie could have, and you're doing what you can for him.

If you ever need someone to talk to, please email me and I'll send you my phone number. I haven't been in your situation, but sometimes talking to another mom can help.