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Sigh.. still MIA for the time being


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  #1  
February 20th, 2010, 08:06 PM
fishysticks's Avatar Platinum Supermommy
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Hi ladies! I miss you all. I'm so busy with the kids and keeping the PR I cohost alive and LIFE that I still don't have a lot of time to come in here and post as much as i'd like!

I wish I could stop and say Parker is BETTER! but he isn't. He doesn't appear sick, he doesn't cough, he isn't raspy when he breathes.. no fevers.. is generally happy.. but the kid JUST WON'T EAT! We're still force feeding him 3+ bottles every day. it is SO frustrating, and the doctors just don't care. He's hydrated, his tests are perfect.. so they just use "well he's recovering from RSV!" as an excuse, even though he has NO symptoms of even having it anymore. People always suggest to go elsewhere, but we've been to the best children's hospital in the STATE where we'd be sent by any other practice and have already seen 7 doctors and they've all said the same thing- wait it out.
I don't want to wait, KWIM? I feel like he SHOULD be eating again. We at least shouldn't have to force formula down his throat so many times in a day. I'm so confused!

And I thought our pedi backed us up but she ALSO wants us to get the cystic fibrosis testing done. I know i'm not a doctor, but i've done a LOT of research and he just doesn't meet the criteria. No way is it inherited, and he hasn't had REPEATED resp. infections, just one. He doesn't have a huge appetite with no weight gain, nothing fits.. I just don't see the point in going through all that testing (which I can't even TELL you how long we'll have to be at the hospital AND how far away it is) when I am POSITIVE it will come back negative.

Really, what would you do if you'd seen SO many doctors and no one seems to care that your kid just won't eat? He hasn't eaten a full bottle in over 6 weeks. I think he's gaining some weight back, but only because I force feed him AND fortify his formula with more calories per ounce.
I really can't believe i'm still dealing with this. NO baby should have to go through this. And I shouldn't be the only one concerned!!

In other news (so to speak) I got canvas prints made (20X30) for REALLY cheap and they came out AMAZING!

They look small in the pic, but they are HUGE and awesome! I got them for 60.00 a piece including shipping (when shutterfly charges 129 without shipping for the same size). I'd be happy to share the website if anyone's interested. I'm so pleased with the result! I guess that's ONE bright side to the situation!
At least Parker is happy throughout this mess (other than when he's being force fed, of course). Working on 4 teeth, can sit on his own for about 15 seconds on his own, pulls his legs up under him, LOVES to stand, play with toys and yell at me all day long
if it weren't for that I think I might lose it!!!!

I'm so sorry I haven't been around, I never ever expected to be going through this
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  #2  
February 20th, 2010, 08:15 PM
GinaS.'s Avatar Mega Super Mommy
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It's nice to hear from you! I hope everything clears up with Parker and he starts eating again!! Poor little guy! Your boys are so cute - and the pics are great! Keep us posted!
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  #3  
February 20th, 2010, 08:23 PM
mrscheriezach's Avatar Mega Super Mommy
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im sorry he still isnt eating. perhaps he just still has no appetite even though he is better, the appetite can be the last thing that returns to normal. I know im not a baby (most of the time) but when i had my c section infection, i had about 5 weeks where i didnt want to eat, even though the infection was gone. if he is healthy and energetic, and he has a great mommy like you forcefeeding him, it sounds like he will continue to thrive.. im glad he is feeling better for sure.
PS those pics are awesome!
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  #4  
February 20th, 2010, 08:34 PM
fishysticks's Avatar Platinum Supermommy
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I HOPE that is the case, and that maybe it's just a lingering thing where his stomach just needs to stretch back to normal size.. but as a mommy you ALWAYS worry! There were times today where he didn't eat for almost THREE hours and still would only get down half an ounce until we had to force feed him. And Thomas loses patience so fast that he ends up force feeding him when really all Parker needs is a break to calm down (he screams about 2 seconds into every bottle now. ugh) and then he'll eat again.
it's SO frustrating. Many times the past week i've felt really close to my breaking point. I know anyone would be with how long it's been.. but I still feel bad about it. I just wish a doctor, ANY doctor, would care like I do and see if there's maybe something ELSE going on that's causing him not to eat.
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  #5  
February 20th, 2010, 09:10 PM
SusieQ2's Avatar Jersey Girl
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I'm sorry you're still going through this. To be honest I'd probably get the CF test done. My son had it done when he was 6 weeks old. It's very non evasive. They put a little bit of a chemical on their wrists that causes sweating and then they hook an electrode up to it and collect the sweat. Then they test the chloride in the sweat. No needles or pain of any type are involved.

I say to get it done because then if it comes back negative you can say that you did what they wanted you to do and get them to move onto the next thing to hopefully figure out what is going on ya know?
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  #6  
February 20th, 2010, 09:39 PM
fishysticks's Avatar Platinum Supermommy
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the test isn't for another month (of no answers) and isn't as non-invasive as that one. They want him to have NO lotion for 3 days.. and for us to MAKE him sweat by wearing multiple layers. Not just a medication to make him sweat in a certain are like everything I read. it's totally ridiculous and will take HOURS (of me, alone, in a hospital with two kids, no naps, and no food). I just think it's SO pointless and they should be concentrating on his not eating instead of ONE respiratory infection that's normal considering 95% of all babies before the age of 1 get RSV and it can take up to 8 weeks to clear up completely and he just tested positive a few weeks ago.

I know i'm sounding stubborn but my instinct tells me it's pointless, and my instinct was right at first when I knew it wasn't RSV and they were treating him incorrectly, which caused him to eventually GET RSV which is causing this prolonged problem. ugh
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  #7  
February 21st, 2010, 05:36 AM
mommy2Breana+Brandon's Avatar Platinum Supermommy
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I am sorry Parker isn't better but I am glad he isn't crabby for you that would make the whole situation even harder.

I hope you can find some answers soon and that he starts to eat soon
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  #8  
February 21st, 2010, 05:38 AM
~Paula~'s Avatar Platinum Supermommy
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I agree I'd have the test done just so you know 100%. If one Dr suggested it, I'd say get a 2nd opinion but since several have, well... I'd do it.
Does he eat on his own if you wait? Like, how long do you let him go without eating before you force feed him? 3 hours isn't that long, but I'm not sure I understood correctly.
I'm sure his appetite is still just at a loss. It'll take time, as you said it can take 8 weeks to clear completely. Once you stop eating for awhile your stomach shrinks and it takes a while to stretch it back to normal.
Is he still losing weight? What's his weight at on the charts? What about baby food? Will he eat that? Maybe a different flavor other than formula and he'd be more eager to eat, kwim?
Those prints are beautiful!
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  #9  
February 21st, 2010, 09:59 AM
fishysticks's Avatar Platinum Supermommy
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It hasn't been several doctors that suggested the testing.
the pulmonologist (who didn't listen to a single thing we said and gave him medicine that did NOT help him at all because she's an idiot who couldn't understand that he is NOT wheezing OR having trouble breathing even if his rate is increased and therefore does not need albuterol or anything to help him breathe- he's doing it just fine on his own) wants to do the testing. Our regular pediatrician is agreeing probably because she was told to (since she works at a smaller branch of the same hospital). None of the 5 or so other doctors who have seen him have ever even MENTIONED cystic fibrosis. that includes 2 pediatricians at the same practice and THREE at the hospital.

3 hours is a long time to wait for him to eat when you consider he's only eating 2 ounces a bottle. He has to get an ounce in him an hour or he will not sustain his weight. That is why I feed him so often.
It honestly doesn't matter how long I wait. You'd think the longer I waited, the hungrier he'd be.. not the case. If we're out and can't get him fed (he will NOT eat in public, especially not now) and 3 hrs goes by (when he only ate 3 ounces at his last bottle and is ACTING starving), more often than not he'll eat a half an ounce and refuse the rest and then scream every time the bottle gets near him.

I have no idea if he's still losing weight, I don't have a scale that can accurately gauge that. We were told we should be going in for weight checks but every time we call the doctor they don't return calls. They just don't seem to care. His last weight was 13lbs2oz, which is under the 5th percentile. At 3 months old he was 14lbs10oz if that tells you just how bad this is.
He FEELS heavier and his diapers aren't as loose so I can only assume he's gaining some back. Only because we're fortifying the formula and forcing formula down his throat when he otherwise wouldn't eat anything at all.
He eats oatmeal and rice cereal just fine. Gets annoyed after about 15 minutes and then he's done.

I guess I would assume by logic that each day he gets farther out from the sickness, the bigger his stomach would get.. which would mean a steady improvement- but there's no steady improvement. We have one OK day, and the next day are back to force feeding him every single bottle.
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  #10  
February 21st, 2010, 10:44 AM
~Paula~'s Avatar Platinum Supermommy
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Yeah if he's eating so little at a time, he should be eating pretty frequently.
I honestly don't know what I'd do, it's hard to say since I'm not going through it.
I guess I'd just keep trying until I competely blew up and chewed some people out and made them do something or switched Dr's.
To have him weighed, I'd either buy a scale I know they can be pricey but the way our insurance is set up, we pay each month and it goes in a fund then we can use that on ANY medical, even bandaids, so we could use it on a scale) or I'd call and TELL them I'm bringing him in to be weighed, or I'd just show up and make them weigh him. Don't need a Dr to weigh him a nurse can do it and SHOULD do it without having an appt.
In the mean time I'd force feed him like you are and pray his stomach just isn't stretched yet.
Have they done any x-rays of his belly or anything to look at it and make sure it's ok? Made sure it's not something totally different going on?
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  #11  
February 21st, 2010, 11:56 AM
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I was just going to ask if they've done an ultrasound of his belly or anything. I wonder if maybe he has an ulcer and it's painful for him to eat.
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  #12  
February 21st, 2010, 01:12 PM
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I agree with Paula and Susan. How is he pooping? Honestly I'm really shocked that no one has suggested a feeding tube to you and to then reassed his weight gain once he's getting enough.
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  #13  
February 21st, 2010, 03:25 PM
fishysticks's Avatar Platinum Supermommy
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No, no ultrasounds. He's had 2 Xrays done and they found absolutely nothing wrong with those (another reason why I don't see a need for CF testing because there has to be XRays to confirm and every doctor who's looked at them has found nothing but perfection)

I think the problem is they just keep assuming he's "still getting over RSV" and because he's still wetting diapers and pooping 3+ times per day.. that there's nothing to be concerned about- but to me it's just the opposite. If he's feeling so much better- WHY isn't he eating still? To me it would seem like there was some other reason, KWIM?
They just don't care enough to test for anything else.. except cystic fibrosis of course. ugh.

He's getting over 20 ounces a day with the force feeding, and with the fortified amount he's getting around 24-25 technically. Which isn't as MUCH as he SHOULD be getting, but it's enough to make him gain weight back.

I was just telling Thomas today that i'd like to get a new scale to keep track myself since no one else gives a flying fart. We have an FSA but we've used almost ALL of it already on useless medications and appointments. ugh again!

today he slept for 3.5 hours, so when he woke up I SWORE he'd be starving. Nope. one ounce and he freaked. wanted nothing to do with the bottle. Not even with me singing and rocking him (which sometimes can get him to eat).
It's SO frustrating.

It's not like this is some condition he's had since birth- he got sick and it seems like it RUINED him. Thomas keeps saying maybe it's a GI problem.. but other than something CAUSED by the sickness I can't see how because the non-eating started pretty much when he tested positive for RSV
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  #14  
February 21st, 2010, 03:50 PM
fishysticks's Avatar Platinum Supermommy
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oh- and he's REALLY gassy lately. coincidence?
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  #15  
February 21st, 2010, 05:29 PM
~Paula~'s Avatar Platinum Supermommy
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I was also thinking GI problem. Sounds like it's painful for him to eat.
I'd demand they check his throat and belly and give up on the CF testing. Although, if that's the only way they will move past it and try to find another reason he isn't eating, then I'd do it.
He should be getting 24 oz, and since he is, you're doing good.
Abby isn't getting that much. I'm starting to get worried but she's gaining perfect, growing and FINALLY less crabby. She goes 6 hours between feedings and eats at most 4oz at a time, sometimes she only wants about 2oz. She's getting about 16-20oz a day, but they also have rice in them so I assume they are just more filling.

She hasn't been sick so I know it isn't anything related.
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  #16  
February 21st, 2010, 06:10 PM
fishysticks's Avatar Platinum Supermommy
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It really does seem that way! I should honestly take a video of what he does when he eats- that's how I FINALLY got Holden diagnosed with GERD. Everyone kept saying "COLIC" up until then.
Parker acts STARVING, takes a few sips and then either lets it pool in his mouth and chokes/coughs and cries, or pulls away and cries. This happened when his reflux was at its worst but he JUST upped his dosage to try and settle his stomach so he might eat more (per instructions from the ped).. but he had other signs of reflux issues then and he has NONE now. plus the dosage is so high I don't see how it COULD be that- but I guess anything is possible??

If Parker were gaining weight well I wouldn't be so concerned. I wasn't even concerned when he was sick because he was SO happy, it's always been the weight that's worried me.
And I just stepped on the scale with him and that thing is SO far off that I have no idea how much he weighs. I hate that scale

I just really don't think we can go another MONTH of force feeding to wait for that stupid CF test for them to finally realize that they are sooooo wrong by going that route.

We did the oatmeal in the bottle with Holden and that really helped him too, but he was always a good eater regardless. He was 25 lbs at 6 months. I never expected Parker to be THAT big, but he was on the trail to being very close.
I plan on both Thomas and I raising absolute hell over the phone tomorrow to the doctor. soo so sick of being brushed off.

The more I think about everything going on, the more it seems like there has to be something weird going on with his stomach. Before he got sick he pooped once a day- now he's pooping 3+ times a day. His spit is VERY thick. I don't know that it's boogery exactly, but just THICK. Don't even know how to describe the poop and all the farting is ridiculous. A lot of times he'll fart/cough in the middle of the bottle and THAT will stop his stride and he'll stop eating. can't have any kind of friggin distraction.
He's working on 4 teeth, just hope it doesn't get written off as that. UGH.

I wish doctors would realize what a strong tool mommy instinct is!
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  #17  
February 21st, 2010, 06:21 PM
~Paula~'s Avatar Platinum Supermommy
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I really think not that he doesn't want to eat because he's hurting. Tell the Dr EXACTLY what you just wrote, because that is NOT CF! He sounds so much like Abby!! Like I said, I'm not worried because she is gaining. When she does eat, she eats pretty fast. But for her to eat, she HAS to be in her swing with the bottle propped. She will NOT let us hold her to feed her and I have no idea why. I miss holding her and feeding her. When I try though, she eats very very little, like 1/2 oz.
She just got her reflux meds upped to, almost double the orignail dosage so I don't see how it can be her reflux either but maybe it is?
Hmm, Now I'm getting concerned.
She's teething as well but I don't see why that would have anything to do with her not eating.
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  #18  
February 21st, 2010, 06:31 PM
fishysticks's Avatar Platinum Supermommy
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sometimes when they're teething their mouth hurts too much to want to eat- but that NEVER happened with Holden.. just what i've read.

I don't see how it can be reflux either, it just doesn't fit. Babies are WAY too confusing!

Parker has to be held a certain way, propped, and rocked and softly spoken to or he gets worked up and starts crying. He can't get any more reflux meds than he's already getting and although i've thought about putting oatmeal in his bottles, he's already eating so little I fear he'd get full on less and would put us back at him not getting enough formula.

With CF, a lot of babies have a HUGE appetite and no weight gain- obviously not the case here. And they have super salty sweat.. and as strange as it sounds.. i've waited until he's sweating and licked him and he's not salty at all.

He's still breathing through his ribs a little- which i'm TOLD isn't normal.. but not nearly like he was (hard to explain unless you see it)- so I just keep crossing my fingers that this crap is lingering and slowly (VERY slowly) working its way out of his system but he SEEMS so healthy and happy.
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  #19  
February 21st, 2010, 08:37 PM
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HUGS I hope it all gets figured out soon
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  #20  
February 21st, 2010, 09:13 PM
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CF is part of the newborn testing in our state, it's not on the screening in your state?

I'm actually surprised that the doctors haven't sent you to a GI specialist. Our pediatrician wanted us to see a GI specialist twice for Abe because of his allergy and reflux issues. He's been on Prilosec for a week now and is still spitting up as much as ever, but his mood seems to be better. If I'm not happy with these results, she'll send us to the specialist. I really hope you guys can get things figured out soon.

The canvas pics of the boys are gorgeous!
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