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FTA Week 2014--Day 3: Overcoming Obstacles

Cue another long and rambly blog post. :) Today's topic is: Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!

Raya has overcome a lot in the past 4 years. Some of it is directly related to tube feeding and some of it is an indirect result of the complete nutrition, hydration, and helpful medications she's been able to get through her tube that she would not have otherwise gotten. Here are a few obstacles that come to mind:

Failure to Thrive
FTT: one of the ugliest medical terms to fall on a mother's ears, no matter how accurate it may be at the time. Raya did not take long to fall into the category of FTT/poor weight gain. When you're spitting up and throwing up more than you're keeping down, it's very difficult to gain weight. When you're not gaining adequate weight as a newborn or infant, it's very difficult for normal brain development and physical development to take place. Babies who remain in the FTT category begin to miss important developmental milestones. Thankfully, we had been down a similar road with Kaida as far as difficulty gaining weight so we knew that Raya needed help, and thankfully, Raya's pediatrician referred her to a gastroenterologist. We will forever be grateful for Raya's GI doctor (and her wonderful nurses) for recognizing that Raya needed the intervention of a feeding tube. Within a couple months of using the tube, Raya was steadily gaining weight and was a MUCH more content and comfortable child even in spite of continued vomiting.

 (skip this section if you don't want to read about vomit...)

If I had to pick one thing that was the biggest obstacle she's overcome so far, it would be vomiting. Oh, the vomiting. It started innocently enough with just your average (or at least average for one of our girls) spitting up after every feed. Then she took it to a whole new level and started forcefully vomiting. I vividly remember the day that I had a nice pile of clean laundry on one end of the couch and after feeding her at the other end of the couch, she projectile vomited no less than 4 feet and made a direct hit to the clean laundry pile. 

For well over a year, Raya's vomiting was a part of our everyday lives. We accumulated some pretty awesome vomit stories too, like the time that I stuck a rag in front of her face to catch vomit during a therapy appointment and got my hand too close to her mouth. Instead of soaking into the rag, the stream of vomit shot up into the air and landed directly on top of my head. (thank goodness Neocate has one of the least offensive formula smells!) Vomiting and retching episodes were such a frequent thing that most of the time, it wasn't a big deal at all. Even the kids got to where they could see it coming and would reflexively grab something and stick it in front of her face to try and minimize the mess. I couldn't help but laugh one day when Kaida, who was 2 1/2 at the time, yelled, "She gonna puke!" then grabbed a bucket and stuck it in front of Raya's face and caught the vomit. Other times, I would walk into a room and see little baby Raya playing in a puddle of vomit or even smearing it around with a blanket or towel in an attempt to mimic how the rest of us cleaned up after her. 

For the most part, we were used to it and it wasn't a big deal, but it still was not normal. It was not normal, not okay, not fair, and broke my heart time and time again. During the day, her vomiting wasn't usually as violent. She could hit a pretty good radius, but it was nothing like the night vomits. They were violent, debilitating, and scary. They went on for several minutes, during which her entire head would turn bright red with white splotches and she couldn't breathe. She vomited until her stomach was empty and then kept on retching, only able to catch small breaths in between heaves until her stomach would finally let up and her body could finally relax. I couldn't do anything to make it stop, and heaven knows we tried anything & everything we could. All I could do was sit with her, hold something in front of her face to catch the puke, rub her back, and wipe the sweat off of her face and hold her when she was done. It sucked. (she did have some pretty amazing abs as a result though)

Through MUCH trial and error with feeds & medications, some out-of-state testing, and the switch to a different type of feeding tube, she FINALLY stopped vomiting. It happened gradually over a couple of months, during which I repeatedly had to pinch myself to make sure I wasn't dreaming. It was so strange to realize that it was actually over. The best kind of strange, of course. :) Thankfully, Raya doesn't remember that time in her life.

Motor Skill Delays
 Although she didn't have any severe motor delays, she did have enough that they warranted working with a physical therapist. In her early days of NG tube feeding, it was absolutely necessary to keep socks on her hands in order to minimize the number of times that her tube got pulled out. Looking back, I realized that the socks on the hands probably contributed to some of her motor delays but they really were necessary.
 I realized at one point that she did not know she had 2 hands. She would look at one of her hands and use it to grab things, but the other hand spent a lot of time by her side and got ignored. Even if we pulled both hands in front of her, as soon as we let go, the one hand would move back down to her side. I mentioned it to her physical therapist and thankfully she had some good little tricks that worked really fast. I remember at one session, she stuck both of Raya's hands in the ends of a slinky. As I watched her wiggle her little hands around in the slinky, it was like a switch flipped in her brain and she all of a sudden realized that she DID have 2 hands. It was amazing!

Because of some muscle tone issues due to mild cerebral palsy, moving around has not always been as easy for Raya as it is for kids without those issues. She used to have trouble with tightness in her hips, outer thighs, calves, and feet.

Torticollis and Plagiocephaly
 These two conditions were things that she was born with. A lot of kids with plagiocephaly have "positional plagiocephaly," meaning that their heads become misshapen due to laying flat on their backs. Raya's plagio was congenital, meaning something she was born with due to her positioning in utero. Rather than having the back of her head flattened like most kids with positional plagiocephaly, she had one side of her head that was more flat and the other side had a ridge to it.

The torticollis was also congenital. Torticollis is when the head tilts to one side. For Raya, her head tilted to the left and rotated to the right. Physical therapy and stretching are usually all it takes to correct torticollis. What we did not know at the time was that Raya would later be diagnosed with mild cerebral palsy. The increased muscle tone from her CP made it much more difficult than it otherwise would have been to resolve her torticollis. This picture is a pretty good representation of both conditions.

Thankfully, we had good physical therapists that worked with her and also taught us different ways to position her and hold her to help stretch the tight muscles in her neck and shoulders.

The plagiocephaly was much more expensive to fix. We probably could have just let it be, but because of her torticollis, her plagiocephaly had the potential to get worse over time and cause permanent issues. Without a normal & typical head shape, it can be difficult to find glasses, hats, and helmets that fit properly. It can cause jaw alignment problems that can lead to chronic pain & other dental problems, as well as issues with vision, hand-eye coordination, and many other subtle but potentially significant things. We decided that it was worth the investment to do what we could to correct the condition. (insurance did not cover the cost of the orthotic helmet)
 Completely and totally worth every penny and every bit of the meticulous daily maintenance! (and putting up with the smell...) These two conditions may not seem entirely related to tube feeding but without the proper nutrition and hydration that she has gotten through her feeding tube, she would not have had the energy for her many, many therapy sessions it took to resolve them.

Sensory Issues
 This is one that she is still working on but she has come a long way. Sensory processing disorder is a condition where the brain misinterprets the signals it receives from the different senses of the body. Perceptions of sensory input are skewed to the point of making them either imperceptible at all or extremely exaggerated. Raya has a mixture of both, and this is one of the things that has made getting her to eat orally so incredibly difficult. 

For a child with sensory processing disorder, flavors or textures that most of us either find pleasant or don't particularly notice are highly pronounced. Raya has preferences for certain tastes & textures that are much stronger than a typical child's preferences, as well as aversions to other tastes & textures. Her sensory processing disorder has also made other things difficult, such as walking on certain surfaces. This video is a great example of that:
It took us many, many tries before she could walk across that sideways slope without panicking because of the difficulty her brain was having with processing where her body was in space. 

The correlation between tube feeding and Raya's sensory processing disorder is that without the feeding tube, her oral aversions to multiple flavors, textures, appearances, and temperatures of food would have severely limited what she accepted into her diet (assuming she actually ate anything). The tube has given her a way to get adequate nutrition while being allowed to work through those issues at her own pace, which I feel is important for a medically complex child who feels like so many aspects of life are under the control of someone else that would not otherwise be.

There are other obstacles that Raya has overcome and continues to work through, and whether or not they are directly related to the feeding tube, the fact of the matter is that had she not gotten the tube, she would have been too busy slowly starving to death to ever devote any energy toward working through these other obstacles. It sounds dramatic, but it is the honest truth.

Raya is not the only one that has overcome obstacles. As any parent of a child with medical needs can tell you, there are effects that reach far beyond that one child. Medical stresses affect the entire family, not just the child. As a family, we have worked hard to find a balance between caring for Raya's special medical needs while not coddling her and also attending to the needs of her 3 older siblings AND not neglecting our marriage. We are far from having it all figured out but we have all tried hard to share in household responsibilities as well as in caring for Raya. As the other kids have gotten older, they have stepped in to help in whatever ways they can to the point that we now have a very responsible 10 year old who knows how to mix formula, fill a pump bag, load it in the pump, connect everything, and start the feed, as well as how to put the tube back in when it gets pulled out and fix most pump errors. Our 9 year old is not far behind in a lot of those things, and even the 6 year old knows how to read what alarm is beeping on the pump and then pause it until someone can fix it so we don't have to listen to it beep.

I personally have overcome some degree of my fear & anxiety over having Raya under the care of someone other than myself or Donny. That is no small task! I have always been a bit of a control freak (which is not serving me well during what is hopefully my final week of pregnancy...) so it's really difficult for me to not know 100% of what is going on in Raya's life (or any of my kids, for that matter) and even more difficult to not be the one in control of what's going on in her life. I know that in the coming years I will have to surrender more of that control to the staff at school as she is there for more hours in the day and as her feeding regimen changes over time, but for now it's baby steps.

 Keep on working hard, Miss Raya! ♥


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