Sometimes I'm just so angry. So frustrated.
It all seems so unfair.
We worked so hard to get pregnant. So hard to stay pregnant. Then Pre-E came. And Robbie had to come early.
He fought and fought and endured so much- tubes in the throat, needles everywhere, wires, leads. He was so tired that sometimes he had to take breaks from breathing. It was so hard to watch him suffer, to watch him struggle.
And then things got better.
Finally he was breathing. Finally he could eat. Finally he could stay warm. Finally he could be held any time he wanted. Finally he could eat.
And it was bliss.
Over and over again we heard how well he was doing. How great he looks. How amazing his progress is.
And now there is this thing. The eating. It sounds so simple. He can eat any time he wants as much as he wants. And he seems to want to eat, only he doesn't.
He'll gnaw on a nipple. He doesn't fight the bottle any more. He doesn't seem to be in pain. His reflux is still there but the burning seems better.
But if he's awake he doesn't want to suck on a bottle. If he's sleepy- he'll suck away. Latch on and eat. But if he's awake- he'll only gnaw.
And no one knows why. Everyone seems to agree that it's not an oral aversion. He loves his paci. His loves to suck on his hands. On my hands. On a wrist ratttle. Anything but a bottle.
But he also seems to WANT to eat. If I put his milk in a Playtex Drop-Ins bottle and squirt the milk into his mouth he'll swallow it. But not if it comes from a dropper. He wants to seem like he's eating and getting milk and then he'll swallow. Only he won't suck.
Most days I can time his feedings around his sleep. He still starts off gumming at the nipple, but as he gets drowsy, he'll latch on and suck and then he eats. I'm able to get him to his daily food goal that way.
We started thickening his feedings with Simply Thick and that seems to have helped his reflux.
But then there are days like today where he doesn't want to nap so therefore he doesn't want to eat. Days when I have to put him down on his playmat and take some deep breaths because I'm so frustrated that I want to cry.
I set an alarm at night to feed him every 3 hours to be able to get as many calories as possible into him while I can.
I'm tired. So tired. I'm falling asleep feeding him at night. I wake up doing the head bob- and the bottle dropping bob.
I know what the doctor will say. A G tube. I don't want another G tube. I hated the one he had. It leaked all the time. And I'm convinced it made his reflux worse.
I just want him to eat. I want to know if or when he's going to outgrow this. I've experimented with cereal- he does okay. He probably ate a tablespoon worth tonight. Not bad for a kid who really shouldn't have solids for another 2 months.
Maybe when more of his nutrition comes from solid food he'll do better? Or maybe it will lead to more trouble? I don't know.
All I know is that I'm tired and frustrated and worried. I'm sick of worrying about every cc that passes his lips. He doesn't deserve to have an anxious, hand-wringing mom. He doesn't deserve a body that betrays him. He's already been through enough and I don't know how to fix it.
--Trish
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15 comments:
((HUGEHUGS))
::Big Hugs::
You are doing everything you can Trish. You are an amazing mom to Robbie. Hang in there sweetie.
I really hope Robbie starts to eat more - having to feed him when he (and you, of course) are both sleepy sounds awful. I have been lurking on your blog for some time now, and I just wanted to write how much reading your honest, detailed account of Robbie's progress has helped me out. My daughter was not a preemie but she was (very unexpectedly) small and started refusing to eat because she was too tired - and just knowing all the things you and Robbie went through to get to this point really helped me out (plus all the practical information like being able to suggest things like a SNS to our skeptical doctor).
Aww, girly. I'm here for ya anytime you need me. I know how much this all sucks. If only they'd eat and grow.. if only.
Everyone else said it better.
This too shall pass. One day Robbie shall be a strapping teenage footballer, who eats 3 uhaul loads of groceries a week.
Now is not forever.
Poor poor Mom. I can't imagine how difficult it is right now. I wish I knew how to fix it too. Right now though, I'm thinking of you in a year's time and you saying to yourself, "this time last year, Robbie wouldn't eat and now look at him go." You continue to amaze me. I'm sure you're too tired to know, but you are a phenomenal mother and my heart goes out to you. You both deserve something better than this.
Robbie will outgrow this. You gave him a strength that continues to inspire me. That strength will see him through this and Mrs Spit is so right - Now is just a brief moment in time.
Hugs to see you through and hope that Robbie will be a better eater soon.
I'm not sure if this would help but have you tried freezing milk into little popsicles? I tried this with my son (with varied sucess) but it was something a doctor suggested to me. One of my sons (twins) had a lot of trouble for about 6 mos or so. At his best he never took more than 5 oz and it was more like 4 on average. Meanwhile his brother would suck down 8-9 oz in 5 minutes flat while we were still rocking him and shoving in the bottle after 45 minutes. I guess he grew out of it and turns out he loves table food (well did, toddler eating is a different story) but he loved all baby foods exccept cereal. He is still tiny now. Almsot 3 and 25 pounds but he does gain, just very slowly. Are there are any feeding support groups in your area? Maybe you can get some help and suggestions!
Huge hugs and lots of prayers. I so wish I knew how to fix it, too,
This is going to sound crazy but have you tried feeding him milk from a cup? Just a regular cup (probably a plastic one would be best so that you could squeeze the sides and control the flow). I have been following your story and I am an OT. I just thought I would throw this out there. It seems as though he just is not getting the suck of the the S, S, B sequence and this will not require full lip closure, etc . . . Can't hurt, might help. Just make sure you have him positioned upright with one hand @ his neck/jawline. Good luck~ Hang in there. You rock as a mom!
You're so right- he doesn't deserve this. :( But he does deserve the awesome, amazing Mommy he does have (hugs)
don't give up. Have you tried a different flow nipple? How about adding cereal to his bottle since he likes the cereal already? my nephew, how was premie also, ate cereal from a spoon 3 times a day only 2 weeks after his original due date came and went. The docs back in the mid-90's believed in feeding him earlier than most because of the nutrition needs. Also, I tried 3 different bottle/nipple types before my daughter would latch onto one. (she was so use to the little nips from the hospital.
I found your blog months ago through another blog I read. I'm a infant/pediatric nurse who also struggled to get and stay pregnant. I take care of children like Robbie who were born prematurely but ended up with trachs/vents and g-tubes, etc...
The amount of strength and courage you encompass daily to care for Robbie is commendable. I know you are struggling so hard with feeding Robbie right now but know that it will get easier. And because you are so good by him I believe it will get easier faster. Where I work we do our best but we aren't the parents. I've seen so many premature infants blossom into happy bouncing toddlers.
Anyhow.. Just wanted to commend you on what isn't remotely easy. And to let you know the light is on at the end of the tunnel.
Meredith
Have you moved up to the fast flow playtex nipple? I just got one for E and the milk POURS out of it... might be worth a try :)
I wish I had more answers for you, but I do have some hugs!
I had the exact same situation with my preemie -mused to rock him to sleep and then he would suck it all!!! he also had reflux i think he was scared of the acid feeling afterwards!
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