Megan's Gagging Isn't Any Better

[Fiddle-Faddle]

  mart said:

When is this surgery? Let's get these prayer warriors revved up. Heck, I'll get my whole church praying for little Meg.

Good idea! T, would you mind telling us the surgery date? I'll put Meg's name (PM me her last name?) on the Prayer Board of the Sisters of Divine Provience--they got Michael (and me) through his open-heart surgery, and I think our synagogue will say a blessing for her, too. Also, my physical therapist's dad is a minister--I'm sure he'd add Megan's name to his list!

Or tell us if you just want us to put her on all the prayer lists RIGHT NOW.

[TCA]

Y'all are the greatest. We have gotten so many cards and letters from churches we have never even heard of that have Megan on their prayer list. Thousands have been praying for her and I literally don't think she would have made it without them. She's had too many close calls. The date is set for 8/15. There's always a chance that it could be earlier if her sats get below the 70s, where they are now. We go to the cardiologist once a week to monitor that. We really do appreciate all the prayers. I started to put her last name here, but my husband is funny about that and doesn't want me to. Let me know if you want me to PM it. The initial is A., or you can use her middle name - Hope. God knows who you're talking about!

Things haven't really changed, but your prayers are paying off. I'm feeling more calm than I have in a long time. The more I think about it, the more I think this all may be a result of her heart startinmg to go into failure again (crazy that its calming ). They had said motility might slow as the heart got to the point they had to do the 2nd surgery. I just didn't expect it to start getting so much worse so suddenly. With her sats being so low, her gut is probably not getting as much oxygen as usual, meaning it can't process the food as quickly. I've had her hooked up to the feeding pump almost all day at a lower rate than usual. I'm trying to get the nutrition in her without stressing her gut. It will just take longer. She's still been spitting up some, but it may be a bit better. I'm hoping at least.

I hadn't considered the gagging being related to a seasonal allergy. I have lots of seasonal allergies, but she's never had so much as a runny nose. I suppose it is possible, though.

Meg loves a good massage and I try to do that for her as many times a day as I can. She'll just melt into me. She also LOVES books and gets so excited she can hardly stand herself when I read to her every day. Silly time with Daddy is also a fun time with her. They have a tickle ritual every night that gets the whole house laughing. Our 3 y/o is also a great source of giggles for her. She's starting sitting alone this week for extended periods of time!!!! That's a big move in the postive direction.

She cut a molar over the weekend and I just noticed another tooth poking through. This is probably not helping, either!

I REALLY do appreciate the support all of you give me. I can't get out much and see my girlfriends, so I've turned to all of you a lot recently. I think each of you have had to deal with chronic illness in some way or another and have an understanding of what it is like. It's hard to relate that to someone who hasn't. I'm glad they're healthy, just wish they understood sometimes. I'm glad all of you do!

Hugs to all!

[jerseyangel]

Hugs right back to you, TCA. Little Megan is a fighter--we're all pullling for her

[Fiddle-Faddle]

Hugs to you and Megan! Hope you have a good night!

[Cheri A]

((T and Megan)) ~~ I'll just say Amen right now to the prayers that have been posted already. You are in my thoughts and prayers, hon!

[chrissy]

have you tried reglan to increase your milk supply?

i am so sorry your daughter is having such a difficult time.

[TCA]

  chrissy said:

have you tried reglan to increase your milk supply?

i am so sorry your daughter is having such a difficult time.

I haven't ever heard of this. Tel me more!!!!!!! BTW - how is your daughter doing?

[VydorScope]

  chrissy said:

have you tried reglan to increase your milk supply?

i am so sorry your daughter is having such a difficult time.

HUH?? Reglan is a drug given to ppl with acid reflux to help with that, I have never heard of it being used to increase milk supply?!?

[TCA]

  VydorScope said:

HUH?? Reglan is a drug given to ppl with acid reflux to help with that, I have never heard of it being used to increase milk supply?!?

Megan is on Reglan (to increase motility and reduce gagging), but I'll borrow some if it will help!!!!

[chrissy]

reglan will increase your milk supply because it affects the hormone involved in milk production. i don't think it needs to be taken on a long term basis, either------once the milk supply has increased, i think you can stop taking it. a friend of mine only had to take it for a short period of time. she had not been able to nurse her first 3 kids for very long because her supply would always dwindle and the reglan made a definite difference for her with her fourth child. i think that there is another med that also will increase milk supply, but i can't remember the name. i'll post it later if i can find it.

they tell me that they feel tianna is improving. we will be going back to seattle next weekend to start meal support training---the plan is that we will bring her home with us when we come back. i am nervous about bringing her home because i know it will continue to be a long, difficult process to get her well.

the statistics say that only about 50% of anorexics recover, 10% die, and the rest remain chronically ill.

[TCA]

Chrissy,

thanks so much for the advice!!! Will check on that today!!!

I'm so sorry you are having so many struggles with your daughter. One of my husband's closest friend's daughter is going through this. She went to a clinic in Colorado for a few months. She will now eat her mininmum required calories in a day, but refuses to go beyond that. She's maintaining. I pray Tianna will do better soon. I have faith she will be in that 50% that recovers!

[chrissy]

the name of the other medication is domperidone. these drugs increase the amount of prolactic in your system. good luck----i really hope that they will work for you!!

[Fiddle-Faddle]

How is Megan today, T? Any better?

[TCA]

  Fiddle-Faddle said:

How is Megan today, T? Any better?

She had an awful night last night. Choking about every couple housrs. We've had to turn her rate down to about 40 ml.hr from 60. This afternoon has been the best she's felt in a while. She giggled a lot, which helps me. I think we're trying the Neocate tonight. Keep saying those prayers!!!!!!

hugs,

Tanya

[Fiddle-Faddle]

How did it go with the Neocate?

[TCA]

  Fiddle-Faddle said:

How did it go with the Neocate?

Well, not as good as I had hoped, but not as bad as the other formulas. I think it may work as something to use on days when I just don't have enough milk. She choked on it a lot, but not the projectile vomiting we've seen with other formulas. The problem is that she just can't handle it as fast as she can the breast milk. B/M is so easy to digest and formulas just aren't. We can get more of the B/M in her, so that's the route we need to go.

I actually called the number on the back of the can this morning to talk to their nutritionists. I think it was meant to be because I spoke with a lady who had a cardiac baby. He died at 11 mos., but she knew exactly what I was talking about with the gagging and retching. Her son did the same thing. They used Neocate, but even that wasn't too successful. There just wan't anything else. She suggested that I use breast milk and just add a little Neocate as I have to since she didn't react as violently. She thinks a lot of this is heart realted and probably will get much better after surgery. I hate she had to go through so much, but it was so good to talk to someone who's been here.

The good news is that I've already pumped 9 oz. this morning!!!!! She also seems to feel a bit better. I'm still going to keep eliminating most of the foods, but keep it leniant enough to keep my supply up. I think peanut butter is the key for me!

The motility study next week (wed.) will probably show if her gut is slowing. Maybe we will have some answers then, or from the cardiologist on Monday.

Thanks for all the help. She still has mild eczema on her hands and feet, but not in other places. The pediatrician had suggested that this could be a zinc deficiency since she's not yet eating. anyone else heard this?

[Fiddle-Faddle]

Still praying for ya, T....

[mart]

Tanya, you've been blessed with so much strength and patience. I am major-league stressed out just reading this. Just wanted to let you know I've been thinking about you and praying for Meg. Lord grant you strength (and breastmilk).

P.S. This was probably suggested here before...if so, I apologize that I missed it, but have you considered getting milk from one of those breastmilk banks? Maybe someone who eats a gluten-free diet maybe?

[Judyin Philly]

TCA ==prayers coming your way...for both you and Megs.

I can't believe with all you had on your plate you took time to send me prayers these past weeks.

( I've not seen this thread as i haven't been on line)

I'll be sending them up for you both.

judy in philly

[TCA]

Maybe it's the exhaustion, but Mart's comment "Lord grant you strength (and breastmilk)." Just cracked me up! I needed that, thanks!\

Thanks so much for all the prayers - they're what's giving me strength (and milk!).

Megan has felt better tonight than she has in over a week. She's been all smiles and energetic. I just got her to go to bed. I don't know what was different, but it's soooo good to see her feeling better. The choking's been better this afternoon too. Can't figure out why, but just glad she's doing so much better.

As for the banks - I am having to be gluten, egg and dairy free now. I'm 100% dedicated to these eliminations, but I'm afraid other's wouldn't be as dilligent. Plus, there's not a bank near me. I checked a while back. Thanks for the suggestion, though. If worse comes to worse, I may not have the luxury of being so picky! I'm also leaving off corn for now too, just to see. Only egg and dairy were RAST positive, but I'm trying different things.

[ddpikester]

I have been a lurker on this site for months now ( have DH) and have followed your story for awhile. I just felt compelled to finally register after reading about your trouble with milk supply. Up here in Canada, domperidone is routinely prescribed for moms who are having trouble with low milk supply. I just recently took it for 6 months to increase my supply to be able to pump for my twins. It made an amazing difference for me and I know many other moms who have used it. It is a medication for stomach ailments but the side effect is increased supply. There are also a couple of different herbs you can take, but I can't remember the names off hand. I can find out if you are interested. Please look into the domperidone though. It can make a huge difference!

I am glad to hear that little Megan is doing a bit better. She is in my thoughts and prayers!

Diana

[TCA]

  ddpikester said:

I have been a lurker on this site for months now ( have DH) and have followed your story for awhile. I just felt compelled to finally register after reading about your trouble with milk supply. Up here in Canada, domperidone is routinely prescribed for moms who are having trouble with low milk supply. I just recently took it for 6 months to increase my supply to be able to pump for my twins. It made an amazing difference for me and I know many other moms who have used it. It is a medication for stomach ailments but the side effect is increased supply. There are also a couple of different herbs you can take, but I can't remember the names off hand. I can find out if you are interested. Please look into the domperidone though. It can make a huge difference!

I am glad to hear that little Megan is doing a bit better. She is in my thoughts and prayers!

Diana

Diana,

I'm really touched that you registered just to tell me this. I think I'll call my dr. on Mon. for a script. I want to make sure that it won't interfesre with her meds, though. I have tried the fenugreek and herbal teas without a lot of success. I can't imagine twins! I can barely keep up with my little one and a 3 year old! I hope this site has proven useful to you, whatever your circumstances are, and that we'll be hearing more of you. I so appreciate your thoughfulness and prayers.

Tanya

[Cheri A]

Diana ~ I'm so glad that you have de-lurked so we can get to know you!

T ~ thinking and praying that today was just as good a day for you and Meg. Mart's comment cracked me up too!!

[Judyin Philly]

tANYA

HOPE YOU AND MEGAN ARE DOING BETTER TODAY.

PRAYERS STILL COMING YOUR WAY

JUDY IN PHILLY

[Fiddle-Faddle]

Hey, T--hope the script works! (We can pray for more milk, too--makes me feel like I'm part of some Earth-mother-rite!!!!) Next time you pump, you can imagine us all cheering, "You go, girl!" from the sidelines!

We used to have a little room at work where the nursing moms went to pump--we put a sign on the door that said, "MOO."