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Megan's Gagging Isn't Any Better

TCA

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TCA Contributor
TCA
Posted
  • Author

Vincent, you are sooo kind. I actually starting packing a picnic basket this afternoon with snacks I can have. They offer a salad and a fruit plate at the hospital, along with other choices, but those should be safe. Before I was only dairy free and they accomodated me. The gluten thing just scares me!!! I'm going to call the dietician tomorrow and see what she thinks. They're really great about supporting bfeeeding moms. If I get in a tight, I will definitely call you. If I can't get to a computer I may call to get you to post how she's doing, if that's ok. You're welcome to come by if y'all are on that side of town. Not sure how long we'll be there, but you could call my cell first. She should just be in a regular room if all goes as planned. I'm really touched that you and your wife are so supportive. We'll be up there for a better part of a month or more when the heart surgery comes around, so there's plenty of time for us to get to meet.

Shai76 - I've already tried completely eliminating corn from my diet since it's common in the formulas with no luck. That was the same thing I suspected. We also did allergy testing and it was negative for corn.

Meg felt much better this afternoon. She's up to full strength Neocate 1+ mixed with breast milk, so that's a lot more calories. She looks like she's gained a bit, so that's a relief. I hope her night goes well. We could all use some sleep around here. My husband did get to come home early since the launch was scrubbed. It's schedule for the 4th now. He has to work a half day tomorrow and then it gets really busy after launch.

Hope you all have a great night!

Hugs,

Tanya

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Judyin Philly Enthusiast
Judyin Philly
Posted

wow talk about friends. Vincent you are one in a million.

Tanya, if you need computer access, you might try the vanderbuilt hosptial medical library..i know we would let patients, family members come in and search and post emails...so it's a thought.

we were always very supportive of the 'non- staff' who came in...

my hugs, prayers and love are still yours, dear one.

keep the faith..

love

judy

thanks for keeping us posted...i keep ck'n in. :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

{{{{{HUGS}}}}}

VydorScope Proficient
VydorScope
Posted
Vincent, you are sooo kind. I actually starting packing a picnic basket this afternoon with snacks I can have. They offer a salad and a fruit plate at the hospital, along with other choices, but those should be safe. Before I was only dairy free and they accomodated me. The gluten thing just scares me!!! I'm going to call the dietician tomorrow and see what she thinks. They're really great about supporting bfeeeding moms. If I get in a tight, I will definitely call you. If I can't get to a computer I may call to get you to post how she's doing, if that's ok. You're welcome to come by if y'all are on that side of town. Not sure how long we'll be there, but you could call my cell first. She should just be in a regular room if all goes as planned. I'm really touched that you and your wife are so supportive. We'll be up there for a better part of a month or more when the heart surgery comes around, so there's plenty of time for us to get to meet.

Still going in on Wensday? I am sure my wife has your numbers, but just incase you need ours again I'll PM you our cells and home #'s. Call anytime if you need somthing. When the day comes I will keep my cell turned on and by my bed just incase. We are not that far from Vandy. Visiting will just depend on us gtting a babysitter for our son, but to bring you somthing you need is simpler because I can come alone.

LivingFree Newbie
LivingFree
Posted

My son had extensive reflux and swallowing issues for the first 1.5 years. Ultimately we had to go to a hyperallergenic formula (Alimentum) and it had to be the canned variety. Premixed was just as bad as my breast milk. The only time he did somewhat okay on my breast milk was when he was taking Zantac and I only ate boiled chilcken and rice and drank water. That was when I chose to start formula feeding him (he was six weeks). Looking back, I would have stuck with that diet and medicine as long as we both could handle it and did the formula once or twice a day to give us both a little break. He is now 2.5 yrs old. I still have to cut his food very small, but he no longer has issues. He is thriving on a gluten, corn, dairy, tomatoe, pea, soy, all berries, all tree nuts and peanuts, and egg free diet. Any of the above cause severe emotional and physical reactions; although, he tests negative to all tests. He is not aphylatic and does not get hives, but that is about the only two symptoms he does not get.

Guest nini
Guest nini
Posted

just thinking of you guys this morning and sending cyber {{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}

evie Rookie
evie
Posted

Add prayers from here for Megan and rest of family!! :) Never can get too many prayers in any situation but especially now. :( Glad she was feeling bit better. even more prayers for Wed. {{[[hug[[{{ evie

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TCA Contributor
TCA
Posted
  • Author

Thanks so much everyone. Megan had a better night and morning. She's napping quietly now. I thin kk she's gained a bit, so hopefully the Neocate 1 + is doing it's job. She's up to about 630 cal/day, but the goal is 800. It's better than before, though. Now we're going to increase volume to reach 800. We're at 31 cc/hr and hope to reach 40 soon by inching it up. We'll just have to see what she can tolerate.

I have a viral infection in my ear and gums and had to go to the Dr. this morning. My dr. was out of town, but I saw one of his partners. He said that stress can make you more susceptible to these things and asked if I had been really stressed lately. Ha! No stress here!!! :P

Vincent, got your PM and thanks!! Hopefully things will go well and I won't have to bother you, but I will if I need you! The hospital is only a couple miles from Wild Oats (I think that's the name) too. That helps. Like I said, we'll be there a LOT over the next couple months, so I'm sure we'll get a chance to meet at some time. Our son is staying with my inlaws this trip, but I'd like to get him and Tymber together to play at some point.

LivingFree, I don't know how to handle foods that we can't easily identify. I tried the elimination diet where I just ate rice, turkey, pears, sweet pot., and squash. She got much worse, so I eliminated those foods. It's hard to tell if the gagging is because of physical problems or foods or a combo thereof. Hopefully we'll learn more on Wed.

key Contributor
key
Posted

Tanya,

Sorry you are sick. That isn't good. Stress can definitely cause illness. I have been there with all the stress from my kiddies for years. They are doing good now, other then the strep throat we all have.

Just wanted you to know I am thinking of you and praying for your family. We just were on vacation and moved, so life has been crazy.

You are still in my prayers!

HUGS,

Monica

Guest Robbin
Guest Robbin
Posted

Tanya, I hope Megan continues to improve with the formula supplementation. I cannot begin to imagine the stress you are under and now sick yourself. My heartfelt prayers are being sent up for Megan and your family.

This is going to sound weird, but is there any kind of condition that would cause a child to be unable to tolerate breast milk? I mean maybe no matter the foods, maybe an allergy to a substance in a mother's milk? It seems that the only constant that you haven't eliminated is the breast milk itself. Perhaps your water has something in it ? My youngest who is allergic to so many things couldn't drink chlorinated water without getting redness and swelling on his face until he was about three or four. He still doesn't drink much tap water and I suspect he is still sensitive to it. Perhaps even flouride? Just thinkiing and typing at the same time. I hope you have a good 4th and lots of rest. :)

shai76 Explorer
shai76
Posted

It's very rare but some kids are allergic to the proteins in the breast milk it's self. I think it would be worth a try to take her off of breast milk completely, especially since she has started to do better with the tube feedings. .

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
It's very rare but some kids are allergic to the proteins in the breast milk it's self. I think it would be worth a try to take her off of breast milk completely, especially since she has started to do better with the tube feedings. .

I know that some doctors insist that this is true, but I don't think it's ever been documented. At least, backin 1995 when someone tried to suggest this to me, I couldn't find any studies showing this to be the case. I'd be willing to bet the that those kids were not allergic to their mother's breastmilk itself, but that they were celiacs whose mothers ate gluten, or they had other major food sensitivities and were getting exposed through breeastmilk.

I'd really worry that it might be dangerous to take her off the breast milk. The breast millk might be all that is allowing her to be able to digest the formula; If that's the case, it could be a disaster to take her off.

Sorry, Tanya, we're not really helping much here, are we? :(

TCA Contributor
TCA
Posted
  • Author

We've actually tried taking her off breast milk and she got MUCH worse. Each formula trial has been without breastmilk at some point. I asked the pediatricain and he said, "An allergy to breastmilk is like an allergy to life itself." the GI agrees that breastmilk is what has kept her alive this long.

I hadn't thought about the tap water thing, though. That's a possibility. Our tap water is filtered. I've been using it to mix formula because her teeth are bad and I thought the fluorine might help. Maybe that's a bad idea????? My son's teeth are soooo bad from the celiac. Of the 4 that she has in good, 3 have visible enamel defects. That's why I thought filtered tap water would be best. I'll ask my husband to pick up some Nursery water on the way in from work. I drink about 20 cups of tap water a day. Never thought I might have to eliminate water!!! :huh:

thanks for the concern for me, but I'm really fine. Mouth ulcers and a sore ear are a bit uncomfortable, but nothing major.

Monica - strep is horrible. I do hope you all feel better soon!

VydorScope Proficient
VydorScope
Posted

TCA... Im sorry I nkw you covered this... but what are they doing on wensday?

Judyin Philly Enthusiast
Judyin Philly
Posted

tANYA,

I'VE BEEN WATCHING YOUR EMAILS VIA: THREAD POSTINGS..I WAS AGAST OVER THE IDEA ABOUT THE PROBLEM WITH THE WATER TO MAKE FORUMULA AND YOUR DRINKING IT...I SWEAR THESE PEOPLE ON HERE ARE 'AMAZING DECECTIVIES...WHO WOULD HAVE EVER THOUGHT OF THAT ONE..NOT ME FOR SURE.

GOSH, WOULDN'T BE BE WONDERFUL IT IS WAS A SIMPLE AS THAT...????? AND DRINKING SOME BOTTLED WATER IS A EASY ENOUGH TEST FOR YOU TO DO...WOW,,,,I WOULD THINK TOO THE FLORIDE WOULD BE A HELP BUT KNOW ALOT OF PEOPLE HATE IT...AGAIN ...2 SIDES TO EVERY ISSUE

SAW YOU POSTED TO ARMETTA AND ME..CAN'T BELIEVE YOUR STILL THINKING OF OTHERS. I STOPPED POSTING ON MY THREAD AS I WANT ALL ATTENTION FOR POSTERS TO GO YOUR WAY, & ARMETTA AND KAREN..GOD BLESS HER SOUL. CALLED HER THE 29TH AND SHE WASN'T WELL BEFORE THIS HAPPENED SO SHE SURE NEEDS OUR PRAYERS BADLY.I'LL KEEP WATCHING THOSE STARS..AND WISHING AND THEN PRAYING. HONSEST, I HAVEN'T STOPPED. EVERY TIME I THINK OF YOU I SHOOT ONE UP.SORRY YOUR NOT FEELING WELL TOO. WELL IT'S NOT SURPRISING NOW IS IT...

LOVE AND HUGS

JUDY

Cheri A Contributor
Cheri A
Posted

Tanya ~ feel better!! Is your hubby enjoying his day off or is he dealing w/shuttle stuff?? My dh and son flew from MN to FL to see that darn thing take off <_< If it doesn't fly tomorrow, then they will miss it :(

Still praying for you all!

mouse Enthusiast
mouse
Posted

Tanya, just checking in tonight to see how the day went for you and Megan. I also cannot believe that you posted on my prayer thread. You are such a caring person. I am going to let the tread die. As this thread is so much more important. I am doing better and even got to the grocery store today with hubby pushing the cart. Wore a long sleeve T as I did not want to freak anyone out with the PICC line. We now get to eat for another week. Please know that I am still praying daily for Megan, you, and your family. HUGS.

TCA Contributor
TCA
Posted
  • Author

Vincent - They are just doing a scope on Wed. endo and sig (both ends), but there is MAJOR concern because of her heart and putting her to sleep. Hopefully all will be uneventful. They will admit her at least overnight for observation and to pump her full of IV nutrition (TPN). until the IV gives out. 3 days max.

Judy and Armetta - everyone's health is important and I have a right to be concerned for y'all and Karen! :) I'm glad both of you seem to be doing better, though. Prayers are answered! A-I know what you mean about the PICC line. Everyone was really freaked out by Meg's, especially since she's so little.

Cheri - I'm so glad your son and husband got to take the trip! How exciting. I've worked many missions before staying home, but never got to see one in person. I hope I can before they retire the shuttle. Jarod did have to work, but only 1/2 day. Tomorrow will be a long one if it goes. He did get Wed. off, though. His coworkers are very supportive. We're very blessed.

Judyin Philly Enthusiast
Judyin Philly
Posted

HI TANYA

SO GLAD TO SEE YOUR POST.

I'LL BE PRAYING FOR THE SCOPES TO GO WELL AND YOU GET THE OUTCOME YOU DESIRE.

WHAT DID YOU DO WHEN YOU WERE WORKING WITH THE LAUNCHES?

WE WENT TO FL AND WAIT TO SEE A LAUNCH AND IT WAS SCRUBED BUT IT WAS AN EXCITING NON THE LESS..

His coworkers are very supportive. THAT'S GREAT IT MEANS ALOT AT TIMES LIKE THIS.

HANG IN THERE.

HUGS AND PRAYERS

JUDY

TCA Contributor
TCA
Posted
  • Author
HI TANYA

SO GLAD TO SEE YOUR POST.

I'LL BE PRAYING FOR THE SCOPES TO GO WELL AND YOU GET THE OUTCOME YOU DESIRE.

WHAT DID YOU DO WHEN YOU WERE WORKING WITH THE LAUNCHES?

WE WENT TO FL AND WAIT TO SEE A LAUNCH AND IT WAS SCRUBED BUT IT WAS AN EXCITING NON THE LESS..

His coworkers are very supportive. THAT'S GREAT IT MEANS ALOT AT TIMES LIKE THIS.

HANG IN THERE.

HUGS AND PRAYERS

JUDY

My husband and I both got jobs working with International Space Station out of college. It was a dream job for me, next to being a Mom, of course. He works with getting the experiment hardware from shuttle to ISS and back. I worked in astronaut training and ISS comunications. I guess God gave me my ideal job while I worked, but I wouldn't give anything for the time with the kids. Sorry you didn't get to see the launch. I went to KSC for an interview with NASA and got to go out to the pad. It was sooo awesome. I'm such a space geek! :P Thanks for the prayers.

Judyin Philly Enthusiast
Judyin Philly
Posted

hi

laid down of the couch to watch some tv about 10:30 and just woke up remember hubby trying to get me up to go to bed...but....just passed out I guess. like Armetta, finally catching up on some restorative sleep :)

It's exciting to hear about your jobs. Remember when i was sick and 'out-of-it' enjoyed emails that got my mind of 'illness' if even for a few minutes so thanks for sharing.

I've never been much into space or astronomy but hubby is..got a big telescope as retirement qift for himself and i'm loving it too.

well hope tonight brings some restoraive sleep for you and little Megs.

hugs and prayers

judy

eKatherine Apprentice
eKatherine
Posted

You are getting far more fluoride in your diet than is recommended, even if the recommendations were not controversial. You need to switch to an unfluoridated bottled water.

Fluoride taken either internally or externally cannot repair damaged enamel nor damage to any other part of the teeth. The purpose of the fluoride is to grow the teeth harder during the developmental stage, so they will resist cavities. Even at the recommended daily intake (1 mg) many children develop fluorosis, a permanent discoloration of the teeth. More fluoride than that is toxic and can cause health issues.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Can a filter (like Pur or Brita) remove the fluoride? They do claim to remove chlorine.

eKatherine Apprentice
eKatherine
Posted
Can a filter (like Pur or Brita) remove the fluoride? They do claim to remove chlorine.

The filter removes chlorine, not chloride. It won't remove fluoride, just as it can't remove sodium chloride (table salt).

Cheri A Contributor
Cheri A
Posted

Wow Tanya ~ very interesting! I am glad that your dh will have Wed off! I just talked to my boys and they are on their way to get in. I pray it does go off today! If not, though, they have had a great time at the Cape and learned a lot. Good father-son bonding time :D

I hope that you and the kids have a great day today and that Meg is feeling well today and gives you lots of smiles!

Judy and Armetta ~ I don't know what is going on with you all, but I hope that you also have a good, healthy day!

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