Skip to main content

3 years later...still a tubie

This weekend we passed the 3 year mark of when Raya got her NG tube. I let it come and go unannounced. I didn't feel like commemorating it and it felt good to not acknowledge it. I just wasn't in the mood for it this time. Even if she was the cutest little red headed baby with a tube up her nose that you ever did see.

When she got her NG tube, it was not my choice. I was stressed, I was scared, I was frustrated, I was confused, and I was sad. (and completely grossed out by the fact that one of our roommates during that hospital stay had head lice but that's a story for another day) There's a line from a song that says, "Every new beginning comes from some other beginning's end." Raya getting an NG tube was the end of motherhood as I had previously known it (i.e. being in charge of what, when & how she was fed and being able to handle her care without a herd of medical professionals) and the beginning of something completely unlike any challenge I had ever faced before. Nobody EVER starts a family and plans on life including this:
But for us, it did. It does. In the beginning, I honestly thought we'd have the tube for a couple weeks, maybe a month or two tops. I thought we'd do some tests that would reveal a diagnosis, which would dictate a course of action, and then we'd fix her and be off on our merry way. (*pausing for laughter...*) Clearly, it didn't happen that way. I'm not sure that it EVER works out that way for ANYBODY, or at least not without some bumps in the road between point A and point B.

For some reason, the anniversary of Raya getting a G tube doesn't make me feel the same way that the anniversary of the NG tube does. The NG tube was not our choice. It came seemingly out of nowhere. It wasn't an imminent life-or-death matter, but it was serious and happened quickly. I had no idea it was coming, let alone everything that came after. The G tube, however, WAS our choice. We could have kept going with the NG. I flip flopped back and forth for months about getting a G tube, but ultimately, it did not happen until I was ready for it. That felt like some tiny semblance of control in an out-of-control time in my life.

In the last 4 months I've done a lot of soul searching. Not really because I wanted to, but because things just popped up that made me take a step back and look at everything. The last 3 years have been the roller coaster ride from... yeah. It seems to go in spurts of high maintenance and low maintenance (and I'm actually grateful that we're lucky enough to HAVE phases of low maintenance!). We've had huge setbacks. Moving from a G tube to a GJ tube was a huge setback. Having the vomit continue and new problems came up with the GJ tube was a setback. Eventually we got past it and went back to a G tube, relatively vomit-free. Then she started putting things in her mouth and occasionally swallowing them. Then she started to actually eat things. We cruised along for a while feeling like the worst was behind us and it was all a matter of getting her to eat enough of the right foods so she could get off the tube. We even got to the point of only needing 4 bolus feeds per day that were fed at the maximum pump rate over 25 minutes. Then we moved and she started preschool. A double whammy that her little system just couldn't take. Back on the pump for 8 hours a day instead of 1 hour and 40 minutes. Food allergies took away pretty much all the food she liked. And so on.

When we get to the times where things are going smoothly, I start to feel like I'm creating drama where there really isn't any. I start to feel bad about the fact that I don't push her harder to eat more food. She eats SO well at in-clinic feeding therapy, so why can't we get her to eat more at home? I start to feel bad about the fact that she's not potty trained, and worse about the fact that the thought of trying just makes me want to lay down and take a nap. Am I the problem? Am I holding her back when I should be pushing her forward? Maybe, but I don't think so. We've been so blessed with wonderful friends whose kids are on similar journeys, and when we're doing well and any of them are not, I feel like I'm stressing over nothing and making a big deal out of "problems" that are just a drop in the bucket of what others are dealing with. I get self-conscious about using the term "special needs." I feel like her special needs aren't "special" enough to fall into that category. Especially when I hear so many "Well she looks healthy!" and "If it wasn't for the feeding tube I never would have guessed that there was anything wrong with her." and other well-meaning comments. She's over the worst of it and now she just has a feeding tube. Doubt creeps in, and the more distance there is between now and the crazy vomiting in & out of the hospital phase, the harder it is for me to remember why we are where we are. Sometimes I read through old blog posts and think, did we really do that? Did I really used to have to wash at least 1 load of laundry a day that was primarily vomit laundry, and wake up 4 or 5 times a night for meds & feeds, and on and on... And yes, I did. We did do all of that, it happened, it was real, and looking back on those first days and weeks with the NG tube, I can see now that my initial expectation of a couple of months tops was completely and utterly insurmountable for a little bitty girl whose body just couldn't get things working right. Apparently so was 3 years.
February 2010, 3 months old
Back then I hoped that the tube would be short term. 3 years later, it's bittersweet to know that it's not. Some days more sweet than bitter, and some days more bitter than sweet. Everything with her requires more thought and planning than it does with the other kids. Everything is harder (except for loving her, that's a piece of cake). Taking care of her requires a whole other set of parenting skills that I somehow did not acquire in my pre-Raya years with the other 3 kids. Thanks to a merciful Father in Heaven, for all the bitter, there is plenty of sweet. The tube keeps her full of all the good stuff she needs to grow and be healthy. It makes up for what she is not able or ready to do yet. Heaven only knows how long she'll have it, but thank Heaven she does because as long as she has the tube, we have a healthy girl. Even so, if anyone had asked me 3 years ago where I thought she'd be at this point, 75-90% tube dependency with multiple food allergies and a plethora of other little diagnoses is NOT what I would have said. But it is what it is. My sweet girl is full of life and energy (and vanilla flavored Peptamen Jr) and I wouldn't have it any other way, tube and all.
I don't know what the next 3 years will bring. There are still a lot of unanswered questions. She's having issues right now that she either hasn't had before at all or hasn't had for a long time. I still have a nagging feeling that we haven't turned over the right stone yet and there are still missing puzzle pieces to be discovered (and all sorts of other figures of speech about figuring something out). I've always operated on the assumption that she will, at some point, be off of the feeding tube. I still think she will, but lately I've been entertaining the thought that we may discover that she has some condition that will necessitate some degree of tube feeding long into her childhood, teenage years, and maybe even adulthood. And you know what? I'm okay with that. I hope that's not the case, but if it is, it is. Worse things have happened than someone needing a feeding tube. It's worked pretty well for us these last 3 years.

And that's all I have to say about that. (Now I'm going to go make another attempt at scrubbing the smell of Raya's stomach off of my hands. Unfortunate stomach content spill. Such is the life. :) 


  1. Brandis, I love your blog so much! And I love you! You are so real and balanced, I know there are times you probably don't feel that way though. For the longest time I had a real hard time embracing the term "special needs" with Tyler. But when it comes down to it, they have needs that are special, therefore, they are special needs and that is ok! Don't ever feel like your struggles are less than others, we all have our own individual struggles in life. They are no less than anyone else's. What is difficult for me may be super easy for you and vice versa. Just wanna send you *hugs*

  2. I used to say "borderline" special needs before we got a feeding tube. I realize now that he certainly had special medical needs back then as he does now.
    Also, I was convinced we would have an NG tube for a couple of weeks, tops. Just to put some cushion weight on him then it would be removed and we would carry on. Not so much. The only reason I agreed to it is because I thought it would be temporary. I now think everyone around me knew it would be longer but I didn't want to see the whole picture. And he needed it so badly his medical professionals let me think it would be temporary. At the time I never thought I would ever need to agree to a g-tube surgery or that he would eventually become 100% dependent on the tube. And now, seven months later, I have realized it may very well be years my son comes off the g-tube. Not that I am exactly at peace with that, but I have accepted it for now. And I credit your blog and FTA with helping me be more calm about it.


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …