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We have some of the same problems. Our son, Ethan, has severe oral aversions. He is 4 1/2 years old and will barely put anything in his mouth. He does not like anything mushy touching his mouth, face or hands. He will drink most anything now and will put a cookie or french fry in his mouth. Once in a while he will bite something but will spit it out immediately and won't touch it again if it gets soft or wet with spit. He had the Nissen and g-tube at 5 months and has had it since. Before that he was used an NG and moved to an NJ and kept throwing up with those. The g-tube helped us a lot too. It was a saving grace. He had a lot of acid for a long time and still took reflux meds. The acid made the balloon on the button burst about every 3 weeks. Now it will last 3 - 6 months although we usually change it before 6 months. He goes to therapy twice a week every week. He has been backsliding a little lately and doesn't want water on his hands. Sometimes when he makes a little progress in one area, he will have something else backslide a little. He's doing great though and just recently began understanding that if he learns to eat he can lose the button. That's great progress.

Nissen and gtube are 2 different procedures. The nissen will stop the reflux the gtube will allow you to feed him. They do them at the same time to keep from putting his under anesthesia more than one time and he's already open in that area. You can ask what kind of tube they are placing. Adam also had a mickey tube.

Adam had a fundoplication (nissen) and g-tube when he came home. It was what allowed him to come home and get stronger while he was in therapy for his feeding issues. Feeding issues are one of the major problems with survivors.

In our case we were dealing with severe nipple aversion (he hated anything in his mouth except his paci) and acid reflux. He would only use one paci and they were hard to find for a while. Once I found them we stocked up. Honestly, it was one of the best decisions we have ever made. He was on it for 13 months while we worked with him at every feeding until we finally got him to start eating and stop using his tube. It's not the same for everyone but once he decided that he liked food he would fill up and we pretty much quit using it. We did have one major set back during that time. He had his first asthma attack and quit eating again for almost 2 months. I don't think I will ever forget how good it felt for him to drink that first ounce of apple juice and then start eating. He never liked baby food and still does not like things that are mushy (oatmeal, cream of wheat, mashed potatoes). He'll eat them but they aren't his favorites.

Just like everything else you've dealt with during this journey it's one day, one hour, one minute at a time. It's frustrating, hard, and tiring but the work you put into getting him home and over his aversions is well worth it. We'll be praying for you guys!

He is getting a nissen g tube because he has bad reflex.

Correction: there are different kinds of g-tubes, our son has a Mic-key button (still called a g-tube and does the same thing) Easy to use.

Lauren. Praying he goes home soon. Our son has a g-tube. It was scary at first, but it helped him a lot and it just became a part of him and has been easy to deal with. He doesn't even notice it. Let us know how it all goes.

I don't have any personal experience with a gtube, but from watching other babies with gtubes, this will help your son grow and with the proper feeding therapy, it won't be long term. I have heard many babies get to go home soon after getting their gtubes placed. He will do so much better at home. I know it is hard to think about caring for your baby after he has been in the hospital, but the day you walk out of the hospital and go home, is the best feeling!! Hope your little guy just thrives at home.

So cute!! Look at him sucking on his paci!! Hope he continues doing well and there are more strong days ahead. That is good news that another surgery is not needed right now. Keep fighting baby boy!!

So happy to hear that you got to hold your sweet baby! Hope he gets stronger with each passing day....he will get there and the vent will soon be gone.

Wow, Lauren - to hold your baby in your arms is such a fantastic miracle. Celebrate it. Wishing you much joy in the long (and at times rough) journey ahead. Special wishes for an early discharge from NICU and smooth settling down at home.

Yesterday, I got to hold him for the first time. Today they took him off the vent again to see how he does. He did better than last time but, he is not ready to get off the ventilator for good.

Good step forward! That is good he got over his MRSA with no big complications and has been moved back into the NICU. He sure is adorable, your little guy! Praying for more strong days!! Hope this week is a good week for him.

Casey is precious and a CDH warrior...he is a fighting hard! Praying for strength for Casey and I hope he keeps making progress towards going home. We are here for you! We do have a TX State Rep. if you want to talk with her. Her name is Casey Carter and she can be reached at texas@cherubs-cdh.org. She is planning a get together for CDH families on April 19th in Dallas if that is something you are interested in.

Tell Casey to keep fighting! (((HUGS)))

He is still in the nicu.

Is he home now? Its def a scary thing for parents, it'll be a battle but eventually itll be over. They are strong little fighters. Good luck in the future and remember to always stay strong!! <3