Thursday, August 20, 2009


So far so good.....the g-tube is holding over for now. Noah is tolerating it far better than we could have expected. We have even gone up on calories and volume and he is tolerating the formula in his stomach like a champ. We met with the pediatric surgeon in Ft Wayne Wayne the other day to follow up and get some ideas. They agreed that his site still looks pretty bad and the Dr did a quick silver nitrate treatment and was able to remove alot of the goo that was down in the site. We have scheduled a g-j tube replacement for Sept 2nd. This will allow him time to heal from last weeks trauma. We have learned that Kimberly Clark, the manufacturer of the mic-key g-j button is having recalls due to faulty baloons, which explains why this one broke. God willing, if he continues to tolerate the formula into his stomach from now until then, we will cancel the procedure all together. I am trying to be optimistic and realistic at the same time. I don't want to put to much on him especially with the feeding clinic just around the corner. We want everything to be working smoothly and have him comfortable so the focus is on eating, and not tube issues. We are headed to Evansville on Sunday and will stay through Monday. We are so excited to see how things work at the clinic and meet the Dr's for his evaluation. I will post all the info when we return!
Zane started 4Th grade last week, it's still hard for me to believe. He is into his second week of practice for tackle football and really seems to love it. His first game isn't until the middle of September. Right now he is still trying to decide which position he wants to play. It was hard to see him in his uniform with pads and helmet on for the first time...I am not sure when it happened, but he grew up when I wasn't looking!! He will be 10 in just over a month!
Elliot is doing fab! Sometimes I think I could just sit and watch him grow, it seems to be happening so fast! He is starting to sit up unassisted and getting up on his hands and knees in the crawling position. I would think in the next few weeks, he will be fully mobile! He is such a happy, smiley baby!

Monday, August 17, 2009

Bad week....

On our last night of vacation at the lake, we heard Noah's feeding pump beeping and went in to find that the g-j had come out. Luckily the site was still open so we were able to put in the foley cath and resume his feeds at a reduced rate. We attempted to get the tube replaced here in town, but the hospital doesn't carry the type of tube he needs and it was going to take too long to get one ordered. We were able to get OR time at U of M just two days later so we headed up on Wed morning. Due to some complications, Noah had to go back in to the OR twice to have the procedure done. Needless to say, two procedures in one day under general anesthesia took quite a toll on him. He had some pretty bad tissue trauma to the site and a lot of pain. By Friday I called the surgeon here in town because he still was in so much pain and the site looked awful. They started him on an antibiotic and we started giving him Motrin for pain. This has seemed to help somewhat. By the rest of the weekend he was playing again, but still not 100%. Last night he woke up crying in the middle of the night and I went in to find that the g-j was out again....Brian and I were just heart broken. There is no way he is in any shape whatsoever to tolerate another procedure and I am not putting him through it again. On the other hand, he looks terrible. He is just so skinny. Giving him a bath last night I just couldn't help but think that he is so skinny he looks sick. His upper body is just skin and bones. There is no way he can afford to lose any calories. In fact, we are going to switch to a 45cal formula. In past, he has never been able to tolerate large volumes of formula in his stomach, hence the need for the g-j. Last night when the tube came out, we put in a spare g-button that we had. We are at a loss of what to do now. If he doesn't tolerate the g-feeds, he will be forced to have another g-j placed, but we are going to try everything in our power to avoid it. The feeding clinic is just around the corner, but we have to have the tube situation under control so they have something to work with. This whole situation is just breaking my heart and I feel like there is nothing I can do for him to fix it....
Noah spirits were brightned by a wonderful visit with the Ellingers. Even though he was not at his best, I think Noah still had a great time with Mason. What an absolute joy it is to see the two of them together!
I have some great pictures of the boys I hope to get up in a day or two. Zane started tackle football and I have some good ones of him in his "gear" (is that what you call it?).

Saturday, August 1, 2009


We have been discussing, praying, and researching a very big decision the past few months. After much consideration, we have elected to pursue an intensive feeding clinic for Noah. We have reached a point that we never thought we would in terms of his feeding issues. We have attempted, on many occasions, to aggressively wean his tube feeds in hopes to stimulate appetite, with each effort ending the same. He will not sustain himself. He does not drink but at best 2oz on any given day and will go, sometimes days without putting any food to his mouth at all. There have been many occasions while bathing him or changing his diaper that I am in tears to see how skinny he is. Although I understand that some kids are just small, or skinny by nature as children, this is different. It truly breaks my heart. We have maxed out on the amount of calories that he will tolerate by tube. We have found the two best therapists in Ft Wayne, that both seem 100% devoted to him. We have all concluded that their time with him, while positive, just isn't enough for him to make the progress he so desperately needs. I can't tell you how many conversations with people and medical professionals I have had about his feeding issues. It is the most misunderstood and frustrating topic that usually ends in the same place every time. The truth of the matter is that Noah has never really eaten enough to sustain himself, but we do know that he wants to eat, he can chew and swallow to a certain extent, but he has always had trouble taking any volume, especially liquid into his stomach, hence the need for the g-j tube. Plus, each time the g-j needs replaced, it requires putting Noah through yet another procedure. I am sure that being two, there is a huge behavioral block, as well as associating food with pain, as well as the anatomical structure of his stomach and digestive system. 44-69% of CDH kiddos will end up with supplemental tube feedings an up to 50% are still tube fed by age 1. Taking a long hard look into the next two years, we feel like we are swimming up stream. He is still requiring 12 hours of continuous j feeds at night, squashing any hope of the natural fasting time during sleep not to mention keeping him away from the prospect of a big boy bed anytime in the near future. Watching a typical two year old and their love of food just makes me so sad of what Noah is missing out on. The bottom line is that his quality of life will improve by leaps and bounds if we can get him to nourish himself.
Okay, so what does this mean...
Noah, myself, and Elliot will be packing our bags and heading to Evansville, Indiana to an intensive day feeding program for 8 weeks. Wow, this has been a huge decision, as it means once again, our family is divided. Evansville is 5.5 hours away from our home, making the commute a difficult one. We have spoke with many different clinics in Ohio and Michigan, and Evansville kept coming out on top for us. We must be covered under insurance and heading out of state would make it less likely to be covered. The biggest blessing is that we have little to no wait time to get in, other than the insurance red tape, housing, and setting up childcare for Elliot. All this being said, we could leave as early as a few weeks from now. I am feeling major guilt knowing that so many families are still waiting for availability or insurance issues. The program consists of five days a week, all day. He will eat all of his meals and snacks in the clinic setting, but be able to come "home" every night with me to sleep and nap. The multidisiplary team consists of a pediatric gastroenterologist, nurses, phsycologist, OT, speech pathologist, feeding technicians, and takes a village, right? There is no force feeding involved. They will use a combination of oral motor exercises, chewing exercises, texture grading, intervention strategies and other feeding techniques. I have been reading different case studies and the results are amazing...most of the studies I read of kids that were 100% tube fed for most of their life, had their tubes discarded after 10 weeks of treatment. Wow!! Now obviously there is no guarantee that this will work, but we have to try it. It would be better to try and fail, than to never try at all and continue with conventional methods that we know are not working.
So I am am working out details now and trying to figure out how everything is going to work. It will not be easy, but I keep reminding myself, it's only 8 weeks, compared to the possible years we are looking at now. It is going to be hard on everyone, especially Noah. I am sure he is going to hate it. Zane is getting used to the idea and he will have lots to keep him busy. School, football, friends and family will consume most of his days and I will do my very best to come home as often as possible to see him. Elliot is coming along and I will be putting him in daycare during the days while I am with Noah. I have left him at the church daycare for an hour or so, but other than Grandma's, he's never been away. I am sure he will be fine, it's Mom that always suffers, right? :) He is still nursing and just now starting to take solid food, so I am hoping I can get the whole pumping thing worked out. Although he is on a schedule at home, I am not sure it will be followed the same in daycare. Brian will be staying back to work obviously, and keeping things going here at home.
I am going to start putting updates on Noah's carepage as well. Many people have expressed to me that they are not able to get updates through the blog, plus I really want to keep a journal of his daily progress.
So, we are excited, scared, nervous, skeptical, all the emotions I thought we would be. I do know that in my conversations with people at the clinic, I have been so encouraged. Talking with them is like a breath of fresh air. They are devoted to feeding issues and have pretty much seen it all. I don't feel like I am defending or explaining his feeding issues, they just "get it" and are ready and willing to help him.
We hope to have many more details pulled together in the upcoming weeks!