With Parker’s current condition, and his lack of eating- we have had to find a certain special way to feed him to get him to eat anything at ALL on his own. It’s frustrating, and ridiculous- but I would SO much rather him eat on his own than to totally freak him out and have to force feed him because it breaks my heart to have to do so.
In order for him to even swallow using the dropper method (which we have to resort to when he refuses his bottle), he HAS to be crying or he’ll just let the formula pool in his mouth and go dribbling out the sides. I fear that having to make him cry to eat is scaring him off from eating in general. Pavlov’s theory of conditioning. Babies can easily associate distress with eating when they are distressed every time they eat.
Feeding him has become SO stressful that it’s hard to hide the frustration while i’m feeding him and he pulls off of the bottle after just an ounce or less when he hasn’t eaten in 3 hours and should be starving. Babies pick up on that. They know when you’re upset and stressed, and it causes THEM to be upset and stressed.. so if i’m even the slightest bit tense while i’m feeding him, he won’t eat anything and it becomes a huge battle and ends in force feeding and more screaming.
I’ve made it a point to be a rock while i’m feeding him. A soft rock. I have to cradle him tightly, close to my body, propped up- and either softly talk to him and encourage him or sing to him while softly bouncing up and forth and back and down. It’s a ridiculous dance that I swear must be working my thighs out better than exercising ever does. Even then, most of the time he stops an ounce or so in and cries- and I have to let him take a break, put him over my shoulder and pat his butt for a minute or two before he’ll go back to it where we repeat the same dance over again. Sometimes four times in one bottle we’ll do this and he’ll still only eat 3.5 ounces. And it takes about 30 minutes. Better than nothing, definitely, but not great. He used to be able to just lay on his boppy facing me (legs on my stomach) and happily chow down on his bottle with no breaks and eat over 5 ounces in 10 minutes with no problems at all. I miss those days.
This, to me, is so OBVIOUSLY not a cystic fibrosis problem. It would appear that it is HURTING him to eat.. and of course the first thing I think of is that maybe it’s his reflux flaring up again. 4-6 months is the worst reflux time.. but other than that he has no symptoms at all. No crying when he spits up, no back arching, sleeps perfectly…
Not to mention we JUST upped his dosage to the highest possible he can get for his age even though he wasn’t having problems then, the pediatrician just said that perhaps if his stomach was even MORE settled, he’d eat more. Yeah… not really.
It would appear he now has some kind of tummy problem. Before getting sick he was a once-a-day pooper. Now suddenly he’s crapping himself crazy 3 times a day, sometimes more. No blood in his stools or anything like that, so it doesn’t seem to be a lactose problem (and I don’t see how he could SUDDENLY develop that after being fine on the same formula for 3+ months). He’s gassy.. oohhh so gassy, but not stinky farts.
We just aren’t being listened to. They’re insisting on us waiting an entire month to get this CF testing done “just to rule it out” before they’ll move on to something else. And if this not eating lingers, that means either not gaining weight or losing weight for another month- not healthy, and not ok to make him weight for a test that just doesn’t make sense considering his symptoms.
If you’ve read the blog, you know i’ve been considering going to a different pediatrician LONG before this sickness ever started.. and the longer this sickness goes on with our current pediatrician not even caring enough to call us back or bring us in to check on Parker and his weight- the more and more I want to switch, NOW.
My biggest concern is that we’ll just be written off like we have been by the past SEVEN doctors who have looked at him. As soon as they hear he’s still in the recovery window for RSV- they write him off and send us home because he’s obviously hydrated and getting more than enough formula to sustain life (only because we force him to eat). I don’t know that I can go through another doctor pulling that crap on us.
I HOPE they’re right, don’t get me wrong, i HOPE that this is just RSV lingering in his system.. but I just don’t think it is.
When will doctors EVER realize that mommy instinct is a STRONG accurate tool? I’m not a over reactive parent, i’ve done my research, I have another kid that I went through the ringer with- I feel like I KNOW what i’m talking about.
I hate that i’ve lost all faith in doctors.. but wouldn’t you have by now?
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