Thank you

[Anonymous]

Hi all,

Sorry i have not post in while. I jus want to say thank you all for all the support. You ladies are great! NOBODY and i mean NOBODY undertands the reflux nightmare as those who have expirienced it themselves. i have been adjusting (physically, emotionally) to the tube feeding reality. I have to say iam thankful for it, she is SO HAPPY NOW, but at the same time i feel anxious and worry about kendra’s future. I feel sad that i didn’t find this forum earlier when kendra was at her worst. Who knows what outcome she would have had. Anyways. Just thank you for everything. She is going for a PH probe on the 11Th and on the 18th will be discussing te results as well as our options for gtube (they even mentioned F.U.N.D.O., but i am not for it for sure). She starts ST on the 10th. Thanks again

[Anonymous]

Hi Leo

Tube feeding is bittersweet, but watch her develop and grow and the bitter part starts to fade away! Then all the work starts on the feeding but at least it is rewarding when they make progress!! I hope she continues to do great!! (Did you tell me you got the supplies? I cannot remember, will look back at the messages…)… the Gtube is easy and we just changed teh button for the first time last friday and it really was not as bad as expected. I am going to be away for 8 weeks but will try to check my PMs on the other boards if you need anything… Maybe one day we can get the Presidente together looking back at this???

[Anonymous]

You are so right that nobody understands how hard this reflux thing is except for mom’s who have been there.

I haven’t had the tube feeding experience, so I don’t know what that’s like, but I sure do feel for you. I can only imagine the stress and anxiety. But I’m so happy to hear that she is doing well and she’s happy.

I will keep Kendra in my prayers.

[Anonymous]

Thais

Thank you so much. You have been so great to me! What a blessing to be able to encoruage others form your own (hard)experience. I so apprecciate your advice and time spent replying to me! The Presidente does sounds good

Christine,

You are a trully caring person. The time you spent on your enrouaging replies, meant the world to me! Thanks!.

I keep you posted on Kendra. Iam beginning to feel stronger and starting to come out of my hidding place. The road ahead is intimadating, but i have you ladies to guide me a little (i think).

[Anonymous]

Hi there,

Thanks for posting your reply. I know how hard it is to deal with all the feeding issues, and we never did tube feeding, but certainly should have and might still have to one day. All I know is that the fear and anxiety around watching them go every day without taking in enough to grow has to be worse then the fear of the tube. I wish I knew that back when we were struggling with sleep feeding. Now we just struggle with eating and drinking in general. It’s scary and exahausting, and we also wonder what the future holds. When you see Kendra growing and thriving and how much energy she has, it will probably be a great relief to you.

I used to wonder all about what ifs… what if I had gotten her on meds right from the time she was born, what if I hadn’t sleep fed her, what if I’d been able to get zegerid here, what if I hadn’t been lost in the system… and on and on. Then I realized that it doesn’t matter, b/c you can’t change the past. And honestly, I don’t know that it would have changed anything for us- Hailey’s first sign of reflux was her feeding aversion and they seemed to start simultaneously. She stopped eating at the same time that we noticed that all the fussiness and difficulty nursing wasn’t just colic and normal breastfeeding issues. Even though we got her on meds right away, we couldn’t turn things around. I since have realized that it’s best just to look forward, and yes, I know it seems intimidating, but I’m sure once you get over the hump in the learning curve things will get easier.

Please keep us posted on her PH probe results and how she’s doing in general.

[Anonymous]

Lori,

you are right, you can’t changed the past and is better to look at he future! and yes like you said “the fear and anxiety around watching them go every day without taking in enough to grow has to be worse then the fear of the tube” i am sorry if i sound depressing. the last couple of weeks has been busy (i even got Bronquitis in the middle of kendra’s hospital stay nad can’t seem to recove all teh way).

The NG tube has been God sent and i just need a little bit to adjust to it (she pulled it out and we had to go to the ER, i couldn’t put it back in, the way she’s screaming was just too much, but iam getting better though).

Thank you Lori, i need a kick in the b. sometimes.

Iam sorry if miss any update, but how’s Hailey doing?

[Anonymous]

Thais,

i hope Mathew does good at KK ( I heard really good things about it). I have been thinking about that. Please keep me Posted.

[Anonymous]

Thanks – i am trying to think of ways to update…. probably on the other board. Will let you know… did you do some more research on VA clinic??

[Anonymous]

Leo,

I hope you are feeling better soon. Uggg….it must be awful to have to take care of things while you are sick with Bronchitis. I had the flu last year and it was so hard to take care of the children. I had bronchitis once while I was working in daycare. It was really miserable. Are you on medication or do they think it’s viral?

Knowing Lori (S&H’s mum) I can assure you she wasn’t trying to give you a kick in the butt at all. She was trying to reassure you that you did all the right things and that none of us really knows how things would have been or could have been. I still sometimes feel guilty that my first reflux baby suffered for months on end because I knew nothing about reflux and I didn’t do any research at all. She was on Zantac and I figured that was all we could do. I just didn’t know any better but I could kick myself forever about not doing any research. Mother’s always find things to feel guilty about but we have to try and remember that we do the best we can.

I don’t think there’s a mom out there who wouldn’t feel at least somewhat depressed about their baby requiring a feeding tube. I cried when I read your post about it and she’s not even mine. I cried months ago when Matthew went in for surgery to have his tube placed. Even though I haven’t been there I can empathize with how sad you moms must feel whjen you have to go that route. So I think it’s perfectly normal to feel somewhat sad and even a little depressed right now. I’m sure it will get better with time.

How is Kendra doing since the tube was put in? Is she gaining weight?

[Anonymous]

OMG, I am so sorry if you misunderstood me! I was totally NOT AT ALL trying to give you a kick in the butt!!!! Believe me, we spent our whole first year with Hailey trying to avoid a tube, so I know how bad the fear can be around a tube. For me, it was paralyzing. So much so that I avoided it at all costs and spent all of our time scared about trying to get the calories into her, weighing her, sleep feeding her, doing everything known to man to make sure that we kept her weight up. And all the effort was probably to Hailey’s detriment. I’ve also spent a lot of time over the past 2 years feeling sad and depressed and scared and overwhelmed about our situation, and beating myself up over all the “what-ifs”. I’ve finally let go of all the what ifs and decided that I can’t change what I did and what happened, so to stop beating myself up over it.

I can truly imagine your fear and anxiety and sadness, and like Thais said, the tube must feel like a mixed blessing. But know that you are a strong, amazing person and you can do this, and with time, once you get the hang of things it will all seem less intimidating and things will gradually get better.

Like I said, NOT getting the tube for Hailey way back when was actually to her detriment. She is almost 2 years old, and she still doesn’t like to eat and drink, barely takes in enough to sustain herself, doesn’t sleep well because of all the sleep feedings. But the worst part is that we always feel like we have to worry about her nutrition and her growth, BUT because she doesn’t have a tube she doesn’t qualify for as many feeding programs and most docs think that there’s nothing wrong.

I don’t know if this is any consolation to you, but I also post on the other forum. One of my biggest worries about the tube was that Hailey oral aversion would become worse and she would be slower to accept things orally. But what I’ve seen is that the kids on that forum around her age with tubes are in a similar place (some even further ahead in terms of feeding and oral acceptance) then we are, and they all qualify for good therapy.

I really hope that you have an easy transition and that things go well for you and Kendra. Like I said, I don’t at all think that you need “a kick in the pants”. I just didn’t want you to beat yourself up over things that you couldn’t control. You are a great mom and you are doing all that you can for your daughter. You are entitled to your grief and I understand that. Big BIG hugs to you. You can come here anytime to talk about how you feel, or pm me if you ever need a shoulder to lean on.

Please don’t misinterpret my previous reply. Hugs again. Good luck.

[Anonymous]

Lori,

You did not offend me at all with your post. I REALLY needed to read that. You can live in grief for ever!

I am sorry Hailey’s still having feeding problems. It’s so hard!

Christine,

Kendra has gained 13 ounces in two weeks!! the most she ever gained was 6 ounces in two weeks!, so it’s amazing what a feeding tube can do!

Thais,

i check into the VA Clinic, but they told she was too small for the program. They said she has a good chance of improvetment with the private ST, OT sections.

Things are better!

[Anonymous]

Wow! 13 ounces in two weeks! That’s great. Please keep us posted on her progress.

[Anonymous]

Leo — check again with them when she is 15-18months if you need to… Matthew got his eval at 15months old and tehy will take him into the program at 20mos (hopefully you will not need it…!). You know, funny because i just posted a similar post to the only Lori posted here about not looking back… different perspective but at the end YOU DO NOT KNOW WHAT CAUSED THE AVERSION. Really, we think Matthew’s was reflux but there is no guarantee… it is a process of elimination with children, which is whty it is so hard… Matthew has had esophagitis when i thought he was the happiest kid around and when he was eating almost 100%orally… so hard to tell… you also know from the boards that there are babies that have HORRIBLE REFLUX and yet LOVE TO EAT!!! So, apart from reflux, there is a very individual component to each of our kids… and that is the mystery for us and for doctors… why some kids with similar reflux can have different outcomes!!

Anyway – enough about this… i really think that you will go through all the emotions and feelings, regardless what others tell you but i hope that at the end you find some peace with yourself!! It is so much easier to look forward that way!!!

Christine – THANK YOU!

[Anonymous]

Hi Leo,
I’m just seeing this thread. I’m so glad to hear that Kendra is doing so well with the tube and is gaining weight so well! I know what a relief it is when they finally start gaining. I’m glad you’re starting to adjust to the tube feeding. It sure is challenging, but definitely worth it if your baby can thrive. Good luck with everything. I hope Kendra continues to do well.

[Anonymous]

Thanks Heather!

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