Posted By Posting
Jul 03, 2008
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Mila's Surgical Update
Mila went to the GI yesterday for us to sign the consent for the gtube.

She weights 21 lbs 1.5 oz. She is 33 inches high. Her height is above the 65th percentile, and her weight is between the 10th and the 15th. Her weight for height, however, is UNDER the 5th percentile still. The weight for height measurement is a more accurate way than weight or height alone to determine whether a child is malnourished or underweight. Cardiac kids ( according to the cardio team ) are supposed to be between the 25th and the 50th ( slighly underweight ). We will get there will Mila one day!

That being said, we've decided to go ahead and sign the conset for the gtube. I've waffled back and forth about it for weeks now. I want it desperately but I do not want her to NEED it. Somewhere deep down, I am hoping that she will just get all better without any more tears.

Oh... and I've lost 11 pounds on WW - and gained it all back within a day. Hubby says I'm pregnant. WE'll see!

Jul 03, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
I'm sorry that it has come to the gtube for you guys but if it helps Mila get strong enough to help heal her heart I say go for it. I know it is such a gut wrenching decision. I feel your pain in the weight gain department. If you are pregnant at least you have an excuse then. I lost about 25 pounds and was finally under my pre-preggo weight after doing a marathon and a couple triathlons this spring and I have gained back at least 15 maybe even 20 of it now from sheer stress from this whole surgery thing. So don't feel bad! Let us know when you get a surgery date.
Jul 03, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Maybe she will wean off the tube like Jedd pretty quickly? She seems so strong and tough...I have lots of faith in you both! She's tall, BTW! Are you tall? You look tall in your picture! If you are preggers, CONGRATS! What IS it with all of the mommies being pregnant on this board?!! If this is something going around, I need to get off of PAGER pronto. (!!)
Jul 03, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I know you've struggled with the decision, but if you think it's the right thing to do then it definitely is. You've done awesome with all your decisions up to this point - so don't doubt yourself. From the pictures I've seen of you, I didn't think you needed to lose any weight! Anxious to hear if a baby is on the way :-)
Jul 03, 2008
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Making the decision is probably the hardest part, esp. since you've been through so much already. Hopefully she won't need it for long.

Wow! 11lbs....when will we know?

Jul 03, 2008
amber f
Your the mom and you are always right. So whatever you had decided has to be right! A new baby that would be very exciting. Keep us updated.
Jul 03, 2008
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
wow emily is only an inch taller and 3 lbs heavier. I am sure she won't NEED the tube for very long, mila is a strong little fighter and this will help her catch up and get back to where she needs to be. I still think of you often *hugs* to you and your family! :)
Jul 03, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry it has come to this, but it will be ok and maybe she'll do great and not need it long at all. I am so confused about the whole height/weight ratio thing. Cooper is no where near where he should be on that. I don't think he ever will be. He is well off the charts in that. He weighs around 15lbs and is 27in I think. He is right below the 5th for weight and in the 75th for height, but no one seems concerned at the moment. When he was gaining so slow they were. Can you explain this to me? Should I still be asking ?s about his size? Now I'm kind of concerned, but maybe he's just going to be tall and skinny. My aunt always says "If you rolled me out I'd be tall and skinny too" LOL! Lets us know if your preggers! The best thing I've ever done for my weight was the elimination diet. Man, I lost 22lbs in about 6 weeks. I'm kind of stuck now though.
Check with your
doctor first!