WARNING - RIDICULOUSLY LONG POST!!

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 dieticians....it 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!

HOME!!

Just a quick update to say that Noah is home! The surgery went very well. The whole procedure took just about 45 minutes, but he was in recovery for about 3 hours. He never does very well coming out of anesthesia. After a few hours he started to come around and was crying and pointing at his IV wanting it out. That's always a sign that he's ready to go home! We are so relieved to have this done and out of the way. After all the procedures and surgeries he has had, it never gets easier to see him go through it. The older he is, the more he understands what is going on. He is going to be in pain for a few days and already has some bruising, but we are hoping he is back to terrorizing his brothers by the weekend. We will meet with the surgeon next Friday to have the stitches removed.
I will most an update and new pictures soon! Thank you for all the love and prayers!

Update

Life has been pretty quiet other than a few minor issues. We discovered that Noah has a left inguinal hernia and another small issue in the same area that needs repaired. He doesn't seem to bothered by it, but it still has to be fixed. We talked to his surgeon in Ann Arbor and he gave his blessing that Noah would be just fine having the surgery done here in town. We met with the pediatric surgeon here and he assured us that it is quite common and should be a routine procedure. They will repair the left hernia and explore the right side as well. Surgery is schedule for Wed, July 22nd around 3pm. We aren't sure if he will have to stay until Thursday or not, it will depend on how well he does with the anesthesia. I will update when he is home!

Back to normal...

Finally, life seems to be settling down and everyone is healing up. The boys have all recovered and are back to terrorizing the house and everyone in it! Zane, so far seems to be having a great summer vacation. He and I have been spending lots of time together which is wonderful. It's nice to have that Mommy and Zane time where I can just focus on him. I am continually amazed and so proud of what a big influence he is in his brothers lives. Today I asked him in the car, "Zane could you please put Noah's shoes on?" His reply.."No, my feet are much to big for Noah's shoes". His quick wit is hysterical, as long as it's not at my expense of course!
Elliot is expanding more and more every day! Zane says his cheeks are sure to take over his body soon! He is much happier on the reflux meds and we started him on baby cereal this past week as well. We love seeing his personality grow and change.
Noah is doing great! He is becoming much more adventurous and active. We put up our little swimming pool and he went from standing at the side, chucking random objects in, to actually getting in and swimming, in just a few days. His is living up to the terrible two's and has been in "time out" more times than I can count usually for things like, throwing things, hitting one of his brothers, dumping things on the floor, all with an evil cackle that shows no remorse. Should I be worried? Speech and OT are going well, aside from a very upsetting session last week. We had a different therapist who thought that force feeding was the way to go. I will spare you the details, but it was an awful experience for all and I stopped her and the session ended. While this may work for some children, it will not work for Noah. We have worked long and hard to have food and meal times be a pleasant experience, sessions like that will only fuel his anxiety further. Today we met with his usual therapist and things went much better. Although he didn't eat for her, he got off my lap and played with toys and even gave her a hug when it was time to go. There isn't a day that goes by that we aren't proud and thankful for what he has overcome and accomplished. I couldn't help but smile to myself as I was chasing him through Walmart today. What a normal, typical, 2-year old thing to do....I love it!

What a week.....

So with Noah's birthday behind us, I was ready to move on and focus on feeding issues and tube feeds full force. I should have known Noah would have other plans! We had his two year check up in Ann Arbor on Tuesday. We met with the surgeon, dietitian, and OT. All went well and his surgeon was happy with his tube site and recent chest x-ray. We discussed current feeding strategy and some ideas to chew on for a few weeks and changes to make. I noticed that Noah was strangely docile while we were there, which is quite unlike him. When we got home I could tell he wasn't feeling well. Sure enough we were into the Dr Wed morning with a high fever. The pedi checked him out as well as Elliot (who is still coughing from two weeks ago). She said again that it was just viral and would have to run its course. She told me to expect fevers for a day or so and just to give Motrin. Elliot was diagnosed with reflux that was causing his chronic congestion. I have seen this coming for weeks so I was quite happy to get him some reflux medication started. Noah's fever spiked the next day as high as 104! They said as long as Motrin would keep it down not to panic. Motrin was bringing it down but only to about 101-102. He wasn't tolerating tube feeds and by Sat he was seemingly worse and his cough (from weeks ago) came back with a vengeance. Then he broke out in a rash that seemed to spread quickly. I called the pedi on call and we were told to take him to the emergency room. By the time I got there, he was coughing nonstop and his rash seemed to be everywhere. He was satting in the mid 80's so he was immediately given a breathing tx which quickly brought him back up into the 90's. They did a chest x-ray which showed no sign of pneumonia, thankfully. They did discover a pretty nasty ear infection and deemed the rash to be possible Scarlet Fever. There was a small moment of panic on my end when I heard that, but the Dr told me it is basically a side affect of strep and isn't as bad as it used to be many years ago before antibiotics. He was given an antibiotic for the ear infection as well as the scarlet fever. Thankfully they released him home. He still isn't tolerating tube feeds. Even 30cc made him wretch like crazy last night. I started him on a very low rate of pedialyte last night and he did better with it. This is the sickest I have seen him that's for sure. He is lethargic and miserable and the cough is just wearing him out. Right now he is laying on the couch with a pillow and blanket watching the Food Network. (Ironic viewing choice, I know). I am hoping that magical 24 hour mark of antibiotics will make him a new man.
Luckily Zane seems to have bypassed this all. He has been so great this week, being hauled around to Dr appts and a long road trip to Ann Arbor. Not a great start to his summer vacation, but what a trooper he has been. Now he is relaxing at his Mimi and Pappy's house for a much deserved break from his little brothers!

Look Who's Two!

Yesterday Noah celebrated his 2nd birthday! Each day seems to bring something new. His personality is shining through more and more. When I think back to where he was two years ago, it just doesn't seem possible that he was ever that sick. Although he still struggles with feeding issues and other typical CDH stuff, it doesn't keep him down. He is happy, playful, and full of energy, everything typical of a two year old! Overall he has had a great year! He took his first steps, is learning more and more words and became a big brother. He has only had one hospitalization and few minor procedures, all involving his feeding tube. His social skills and anxiety have improved by leaps and bounds. He is finally trusting enough to enjoy being around other people and kids. We are continually amazed at his progress and are so very thankful to be where we are today. We want to thank everyone for being such a great support system and encouraging us along the way. I don't know how many times we have said that we couldn't have done it without our family and friends. It's crazy to think that two years ago we were just starting out and to look now at how far he has come. He may never know just how special his birthdays will be for us! Here's to next year and I hope by his 3rd birthday, he will actually want to EAT his cake!

A Sticky Situation....

So, the other day, I heard a loud crash, immediately followed by Noah screaming as if someone was shooting guns at him. He came roaring out of the kitchen and literally almost jumped in my arms. When I walked in the kitchen to see what had happened, I could see a light mist throughout the entire room. It took me a minute to figure out what had happened and that what I was seeing was a fine mist of soda covering every single square inch of the kitchen. Somehow, Noah had smuggled in a can of soda from the garage and dropped it on the tile floor and it of course, exploded. Meanwhile, as I was scrubbing down the walls and floor, I glanced into the living room at Elliot, who had quietly been laying on his blanket under the toy bar. I noticed that he was on his belly....and I had laid him down on his back! So here poor Elliot rolls from his back to his belly for the first time and we all missed it! Never a dull moment...Zane thought the whole situation was hysterical and was happy not to be the one in trouble!