G-tube: Hydration & Nutrition

Happy Little Guy

Food and Water.  Two things every human needs in order to survive.  As a parent providing for their child, keeping them well nourished and hydrated is the primary responsibility from the moment they are born. Most new mothers debate whether they should breastfeed or not and then some struggle with whichever decision they do end up wanting or having to do.  Yet, they know that in the end their child will be receiving the nutrients they need in order to grow and develop.  Most mothers and fathers are told that participating in the feeding of their newborn is key to form a strong and stable bond...along with many other debatable observations and antidotes written about or spoken of by doctors, therapists, or parents alike.   Whatever reason is behind a persons desire to be there to feed their child, simply put...they are getting hydrated and nourished. 

Have you ever had a single moment or memory of being near a child as they consumed some form of nourishment that you played a direct role in providing for them?  Either from your breast or bottle or even a homemade meal that you cooked specifically with them in mind?

Now...take away their mouth.  What would you do?  How would you feel?  All that preparation and time you spent?  All that effort!

Maybe I got a tad bit dramatic in the picture I wanted you to see but at least I left you with the same stumped and baffled feeling that so many in this world are faced with.  For a variety of reasons many children as well as adults cannot orally consume food or drink and therefore cannot eat in the typical way that most humans do.  Noah among them.

My husband, our families, as well as myself literally fought the feeding battle multiple times a day to try and keep Noah away from dehydration.  The weight of it all sat on our shoulders like a million rocks that kept piling on with every feed, day, and week that passed.  Topic of conversation between my sister-in-law (Noahs daycare provider) and myself would always be about the spoonfuls or ounces that went into him, if they stayed in him, and how many fully wet diapers were being produced.  There was even a point where we kept logs but then the logs became a pile of rocks of their own and in order to survive we had to brush off the rocks we no longer had shoulder space to store. 

Noah was always borderline and never once looked like he was in danger of being malnourished or dehydrated.  His low tone always kept him looking like a happy chunky baby.  His pediatrician nor any other doctor ever had a concern about his nourishment either.  His BMI was a tad low but never too concerning to call him failure to thrive.  He continued to grow and was very long for his age.  But we knew as his parents that something just wasn't right.  Yes he looked healthy but he was always slightly lethargic.  We blamed the seizure medication or teething or a flu bug.  We blamed the weather or the strain of therapy.  We blamed his near blind vision and his delays.  Occasionally he would have a "day" where he would have all this energy and do something that would blow us away...and then it was gone.  We knew he had this energy storage somewhere.  We knew that the state we always saw him in was not the state he should be living.  He had more in him that was desperate to come out but we didn't know how to tap into it.

Around the age of 12 months Noah was consuming on average 8-12 ounces of baby food a day along with about 21-30 ounces of formula.  Not a ton compared to normal standards but enough to keep him growing and staying our little chunkamonk.  It was a fight to get this much in him and more nights than not I laid awake counting calories over and over to make sure I met our daily goal...which I never did but was always super close.

A few months ago we started what I like to call our "three months in oblivion". Completing another round of intensive therapy at Now I Can but missing many of the days due to sickness.  In and out of the hospital 8 times in two months with simple surgeries and common colds.  Therapy, getting your adenoids taken out, teething and the sniffles should not put a child in the hospital...but with our Noah it did.  We couldn't keep him hydrated.  He was never what the ER docs like to call severely dehydrated but enough to need three trips to the ER for emergency IV fluids.  Severe=debatable.

A sip here and there just wasn't cutting it.  Intermittent spoonfuls of baby food while praying he would "sleep drink" as he normally did was not winning us the war.  We kept hoping that getting his adenoids out or upper frenulum clipped would help his mouth start to work like the docs told us it might...but it didn't.

After the third trip to the ER for fluids we were forced to put a nose feeding tube in him just to have a way to keep him hydrated while he healed from the surgery.  Well, the nose tube made feeding him worse and we eventually were scheduled to get a stomach feeding tube put in (g-tube) just 10 days later.  I felt defeated, like my 19 months in fighting this war was over and I stood on the losing side with my flag dragging behind me like a toddlers woobie.  I cried, I maybe had an extra glass of wine a few too many times, and then I just gave in.  Nothing else I could do.  You cant win a war without the tools to do it.  We needed new tools and a gtube was the next option for us...the only option really.

So, here is my honest opinion about the gtube.  I have an unhealthy relationship with the whole thing.  One day I am in love with it because I know for certain Noah is hydrated and nourished and thriving in his development, but the next day I want to break up with it and throw it out the door and run screaming into my pillow how much I hate it.  Then I sit up, pull myself together, and recited all the good things it is doing for not only Noah but my marriage, our family, and our extended families lives. 

Sound Sleeper these days

We have freedom now.  Instead of all those weighted rocks on our shoulder we now only have a three pound backpack to carry around, and only when he is hooked up to his feeding pump.  The second the gtube got surgically put into his stomach it was like a bulldozer came and scrapped every single rock away from us.  We have yet to waste a single moment or wink of sleep worrying about if Noah got enough to eat, if he stayed hydrated while at the pool, or if his medication actually reached his stomach.  We can do things now.  Like go to the lake or shopping for more than a couple hours.  We can go on long car rides up the canyon now and finish projects.  We  both are able to get a really good nights sleep because the pump is providing him with water and calories and doing all the heavy lifting while we slip into slumberland. The pump is like his Nanny who takes care of his tummy while he gets the rest he needs as do we. We no longer have to force Noah multiple times a day while he is awake to eat, chew, and consume food and liquid his little mouth can't handle right now.  We are no longer the alarm clock that wakes him from every single nap as we try to sneak in a bottle to have his natural sucking reflex take in a few ounces.  We are once again the good people instead of the ones who cause him discomfort and pain and make him throw up or force his throat to work in a way it can't yet.

Noah has THRIVED since the gtube.  As much as I hate that we can't sit down and eat some fish crackers together I love the fact that Noah is starting to enjoy food again but at a much much much slower pace.  We still work with him daily trying to feed him orally but it is a really slow process and we are taking this first few months and intentionally going slow with it.  Normally I jump in head first but all that energy was sucked out of us all and as much as Noah needed the break from feeding torture, we also needed the break to find our sanity again.  We hated feeding time as much as Noah did but afterwards we were the ones who had to carry around the worry and guilt every single day and night.

Liking Food Again!!!

It has only been 7 weeks since Noah got his gtube.  In that time he has put on three full pounds and is even more chunky than he already was.  He is starting to try and sit on his own now.  He is grasping things with an urgency I have never seen before.  He is starting to track across midline back and forth and really trying to attend to objects now.  He is laughing nonstop and babbling more than we have ever heard.  He is tolerating things so much better and longer.  Feeding therapy is just that now...therapy and not a fight so he actually enjoys it once again.  He is sleeping better and napping longer.  He is starting to like certain toys better than others and we found he really loves and adores fuzzy blankets rubbed on his cheek.  He has this energy that wont stop now and is starting to try and stand while in his door frame jumper.  He hasn't been sick once in 7 weeks which is like a new record.  He has even broke two new teeth and hasn't thrown a massive fit about it.  We are no longer in oblivion anymore.  We actually have a truly happy and healthy family and are starting to find ourselves again.  We are calmer and more relaxed, rested and humorous again.  As much as I can say I hate the gtube I can't because the gtube gave us our livelihood back.

Yes, it was a major and massive learning curve that took time and research to fully accept.  In three weeks we had it down to a science and even started what the "Tubie" world calls the "Blended Diet".  Noah is once again getting real food in his tummy which has helped dramatically with his reflux, gag reflex, and overall composure.  

Look at Noah try to sit on his own and use his arms

My advice to all you who are struggling with this decision and are currently in your own feeding war.  Take the time to fully research it, talk with your doctors about it, watch youtube videos on how to take care and maintain a gtube, and get comfortable with the idea before you totally disregard it.  All those moments where you tell yourself "If only I had known..."  This is one for us.  We are not kicking ourselves for fighting our war because it allowed us the sanity to know we did all that we could.  However, seeing what Noah has accomplished since getting fully nourished and hydrated is beyond our wildest imagination.   Its a very tough decision to make but at this point in our family we made the right choice.  He may always need it, he may surprise us and get it out in a few short years.  At least we know that our baby boy is getting all the essential vitamins, minerals, fluid, and substance his body needs to perform at his best and wow us with his next move.