Hello from Nor Cal - Mom to a tube fed, trached, 17 mo old, adorable, and clever boy here!

[JenDiggityMom]

Hello - I'm Jen. I used to visit the forums while I was pregnant - learning about breastfeeding and how wonderful it was in so many ways was something I obsessed on while pregnant. Then I think I posted a time or two here in the special needs section after learning that my son would be born with a dead end esophagus that didn't meet his stomach. I don't think I have been back since my son was born and spent three months in the NICU as we learned (hopefully) the extent of his defects (all along his midline). But now it is a year since we brought him home and life, well, life can be hard! Really, really hard. But it's also been the best experience of my life and I laugh and am overwhelmed with love every single day. I have an amazing son and a husband I wouldn't trade for anything and we will settle into our new life just fine. Ollie has had a j-tube, a g-tube, and a trach since he was just a few weeks old. We are working on overcoming each of his issues, which are all GI tract-related, and he is doing really great in every way. I have found tremendous support on Facebook groups for special needs parents, but, in a situation where I already feel so alienated from my friends and family I feel like the black sheep even among these women who understand one of the most personal and important parts of who I am now. In a community where you owe your child's life to medicine it is not common to go against the medical grain. People who do not vaccinate are judged very harshly. I believe strongly in (plant) food as medicine in a community of people who keep their children on canned corn syrup formulas for years. I have always seemed to be on the fringes of most groups - it'd be great if I were just a full-blown hippy or a full-blown, brainwashed member of the herd, but I seem to share strong views with all different kinds of groups, but not enough views of one group to really belong to any of them. BUT! Here...here I may find someone who shares not just some of the struggles I have as a mom to a child with special needs, but also maybe some of the lifestyle choices that are important to me. I look forward to getting to know some of you and to be of any help I can be to anyone who may need it!

[JFTB1177]

Hey Jen, I'm a Jen too! :) Just wanted to say hi!. My special needs child has diff issues (he's on the autism spectrum) but I can relate to a lot of what you said... I feel like I'm in the middle too. I'm not totally "crunchy" and not totally mainstream either, I sort of take what feels right from both sides, I don't think anyone has to pick a side, you know?

Btw your son is beautiful! :)

[homemademomma]

Another Jen here! Life with a SN kid can be hard, to say the least.  I totally hear what you are saying about not quite fitting in. Having a kid with special needs really makes you rethink your life philosophy, and IMO it gives you a better sense of what is really important. I was totally saturated in the woo before I found out about dd's diagnosis (ataxia telangiectasia), and I like to think that I have a better balance now. I have incredible respect for western medicine, because my girl would be dead many times over without it. But, I still love my herbal remedies and I believe strongly in nutritional healing.

Please feel free to ignore me- but I am just curious as to why your son has a trac, and also what the long term care plan is WRT his g and j tubes- will he need them forever? I don't know much about midline disorders like you are describing. I love to hear about other people's SN kids. 

[JenDiggity]

So many Jens! <3 Thank you for the warm welcome and the kind words.
I had never heard of your daughter's diagnosis, HomeMadeMama Jen. There are so many things that can go wrong and cause so many problems - I never had cause to know about it before, I guess. You just take for granted that everything will be fine - even the books say how rare birth defects and genetic disorders are. But, being immersed in the special needs community sure opens your eyes to how many families are affected by SO many medical issues. So many brave kids, but god, it sucks they have reason to be so brave. I'd rather my kid be a wimp without all the pain and suffering of his medical issues! Actually, I wish nothing different unless I could take away all he's had to endure. It's been hell, but also the best thing that's ever happened to me. I do not mind talking about Oliver's defects. He had esophageal atresia (esophagus ends in a pouch and doesn't meet stomach) and tracheoesophageal fistula (stomach connected to trachea) that has all been connected but results in slowness and swallowing difficulties. He also had a laryngeal cleft (opening between the top part of his esophagus and trachea). The repair for that necessitated the trach, so he'd have a stable airway. He also had a complete tracheal ring (subglottic stenosis) that made his airway narrow - that was repaired with a graft from his rib. He got a g-tube because he couldn't safely eat until the cleft was repaired (he was connected to his stomach at 5 days old - we just couldn't use the thing!). When they were installing that they discovered he also had microgastria - a very tiny tube-like stomach that refluxed immediately anything put into it. So we couldn't use the g-tube and had to put in a j-tube. We were using that until April when we he got a fundplication (wrap at the top of his stomach to prevent reflux) and we could start using his stomach. We are trying to stretch it! We have been succeeding - he is now entirely on g-tube feeds whereas the first year he was hooked up to a food pump all night and part of the day, too. Now I feed him real food I blend up and put through his tube - he gets the best diet of any 16 mo old, I assure you! I am a nutrition nut. He eats very well and never balks at the taste because he doesn't taste it (I do make things taste good, though, in case he burbs!). We hope the trach will be out by spring. We are entering cold and flu season and that means we have t hide out - no traveling for the holidays, no going into crowded stores, no waiting in lines for Santa pictures, that's for darn sure! I am sure I am not the only mom here who can relate to the times of isolation when you just can't be putting your kid into a situation that can result inthem getting suck. With a trach, if he catches a cold with the RSV strain he is the hospital, period. I'd rather hide out all winter and keep him safe. I know this time of year can be hard with some kids on the autism spectrum, too, with all the crowds and activities and extra stimulation. Can I ask how your daughter's diagnosis has affected her, Mama Jen?

[hannahgrace]

Hi! My little boy has a GJ tube too. He is now 100% oral after working for the past 2 years on getting him to eat by mouth again. We almost had to get a trach at one point. He had severe dysphagia following suppraglottoplasty to try to correct his severe laryngomalacia. He aspirated countless times and we almost got a fundo too. So though things are a lot easier for us now, we walked in your shoes for a long time - and tried to be natural and avoid vaccines while navigating the PICU and a myriad of specialists.

Vit D is our "flu vaccine". We are very fortunate to have a wondeful supportive doctor who encourages us to feed him naturally and avoid vaccines. The only one she did recommend was Synagis for RSV. But anyway. I dont know where I am going with this post!

We adopted our son through foster care so he came to us totally following typical special needs doctor's orders - formula, vaccines, the whole nine yards. And he was so sickly. After we were able to switch him to our family doctor, is when his health started totally improving. Natural food + no vaccines = quite the improvement in his health and development.

:)

[peaceful_mama]

You're blending food and using it for tube feeding?  Didn't know that was possible!  I used to work in the school district here with kids with special needs...met quite a few who were tube-fed, but all with some sort of 'formula'.  (the school nurse did the feedings.)  I'm about to post about my baby who is very slow to start solids and not gaining well.  Right now our GI doc has him on night feedings that amount to a supplement through NG tube.  I'm going to ask that it be removed because I'm afraid we'll have *worse* sensory issues if we don't.  (for example, today he was super-interested in some mashed potatoes...but he was gagging on about every 3rd-4th bite.  Too many experiences like that and he *really* will not want to eat.

He also was totally 'into" some ice cream.  He would've eaten a lot more if i'd let him!  I'm totally willing to blend up fruit, yogurt, milk and a bit of sweetener if needed and make him 'ice cream' if he'll eat it and gain.

[cameragirl]

Hello. I am not in your situation, but I have a friend with a daughter that suffered a traumatic brain injury. She had a g tube and then a mickey button for two years before she was able to eat pureed food by mouth. They did not like the formula which caused their daughter to vomit several times a day, as well as making her overweight and unhealthy looking. They saw a nutritionist to plan out a whole-food diet, and convinced their daughter's doctors to let them give it a go. The difference was amazing. She grew into her weight and was no longer obese like she was on the formula. Her skin glows now, and she's very healthy aside from her injury. It is work to cook and puree the foods, and provide for a rotation of foods. However, they're glad they did it and wouldn't go back. I wish you the best, mama!

[homemademomma]

Originally Posted by peaceful_mama 

You're blending food and using it for tube feeding?  Didn't know that was possible! 

I am planning on doing this for my daughter when she gets a gtube! I think it is such a great idea if you can make it work. Jen (OP), thanks for the explanation! I am very nosy about other people's SN kids! 

[cameragirl]

I didn't share the link before, but here is a link to my friend's blog describing their food making. This was back near the beginning when the switched her over from formula. They're in Nor Cal as well.

http://avianareese.blogspot.com/2010/01/who-knew.html