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Hi all,
i’ts been quiet a while since i visited the site. I bet i missed a lot!We have had quite a week. We went to see the Ped GI last wesnesday and we left dissapointed. I really had high expectations; It might sounds unrialistic i know, but i was really hoping Dr. A will be solving all Kendra’s feeding problems. He took a look at Kendra and told us the same thing our ped has told us: “she has a severe oral aversion”. He wrote us a prescription for OT/SP and I left defeated and descorouaged. i had pesimistic thoughts for while “My baby is just going to have this feeding problems for ever”.
We came home and the next day (thursday March 15th) took our older dd to Disney for her 5th birthday as we have promised her before Kendra was born. It was a VERY stressful trip b/c of kendra’s feeding issues, but we manage to make it fun for Melanie. We came home early monday morning and kendra was sick with a cold and was drinking less and less. took her to the ped and found out she has lost 7 OUNCES in 4 days! i broke down in tears at the ped office. I just felt so upset. It takes us about a month to get her to gain that much, and she lost it in 4 days!
I think it wa good i cried (even though it was not intentionally) b/c the ped really paid attention to Kendra feeding problems at that point. She ordered all kind of test including allergy test (celiac, and other wird ones) and refered us to an allergist (we go to see him April the 11th). Some of the test came back negative and some she said the allergist will be discussing with us in our apppointment.
Since kendra has lost so much weight and there was no WAY of making it up, she admitted her to the hospital and placed a NG tube in. They told to stop the Breast milk and started her on pregestimil ( iam still pumping until i know for sure there is a severe allergy problems). While in the hospital they fed her every three hours around the clock. The poor thing was exhausted from no sleep and terrified of the nurses and doctors who came in to see her. She looked a t me every time , like “mommy who are these people and what are they doing? so sad.
We were in the hospital for two days and while there i was taught how to feed my baby through a NG tube. Never in my wildest dreams, i thought i would be doing something like that with my child.
I know is not the end of the world and i am thankful that she can get some nurishment some how, but i was really hoping she would get better. We are meeting with a Pediatric Surgeon next wesneday to discuss a G-Button, since her feeding aversion would take time to overcome. So there is where we stand now. We have a NG tube and we start OT hopefully Tuesday, just to work with her sensory problems, but not food until they place the button.i guess i have lost of questions for all those brave moms who children get their main nurishment thorugh tube feeding.
1.What’s the best button to get placed (Bard, Mickey)?
2.i am sure the Ped sergeon will give me some info about that, but what does this work? they get the surgery first to place the tube, then a few weeks later she get the button? what are the discomfort of this surgery? complications? ( i am researching like crazy now, but your experinces its very important to me)
what else should i be asking?
iam sorry for all the questions and thanks ahead for any advice and for the support.__________________Wow Leo! I’d say you’ve had quite a week. I’m so sorry to hear all you and Kendra have been through.
I definitely know how you’re feeling. Until I had Bryce I never knew you could bring a baby home with a feeding tube. I thought it was so crazy to have to feed my baby like that, and it broke my heart not to be able to nurse him like I did my other boys. When we first brought Bryce home, looking ahead was SO overwhelming for me, especially when his reflux got bad, but I started just taking one day at a time, and that really helped.From my experience, I think the best thing you can do is get started with that feeding therapy (OT). That has helped Bryce a lot with his feeding issues.
Bryce also started out with an NG tube and later had a G-tube placed. To answer your questions, I would recommend the MicKey button. This is what Bryce has and it’s SO nice! Of course I don’t have any experience with the Bard…
As far as the surgery goes, they actually just place the button – it’s just one surgery. The button is the part that goes in the stomach, then when you feed her or give her meds you attach a long extension to the button, if that makes sense. When Bryce had his g-tube button placed, he also had two inguinal hernias repaired at the same time, so I’m not sure exactly how long it takes for just the g-tube, but even with the hernias it was only like 1-2 hours. He was only in the hospital over night, and once he was home only needed Tylenol for pain (and he had the hernia repairs too!). So it’s really a simple procedure, with minimum pain.
They will train you at the hospital how to feed her with the g-tube. It’s just a little different from the NG tube. They will also train you how to replace the button if it gets pulled out of her tummy and (at least for us) send you home with a kit to keep with you so you’re prepared. It all probably sounds really overwhelming and scary, but you get used to everything really quickly, believe me!
Well I hope I answered all your questions. Please feel free ask any more question you think of, and you can PM me anytime!
Good luck with everything!
what are the discomfort of this surgery?
complications? ( i am researching like crazy now, but your experinces
its very important to me)Leo…I just wanted to send you some cyberspace hugs
. I haven’t had much experience with what you are going through, but I am glad that you now have some medical people on your side and Kendra can get the help she needs.
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