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Monday, January 20, 2014

A little bit of reflection on Raya's 4th Tubiversary

If someone had told me 4 years ago this week that Raya would still be getting 85% of her calories from tube feeds 4 years later, I wouldn't have believed it. And I probably would have cried. The last 4 years have been filled with things that I could never possibly have envisioned for Raya as a newborn (or infant, or toddler, or self-proclaimed "big girl"), and the feeding tube has been the most visible of those things. (well, except for the plagiocephaly helmet. that thing was pretty darn visible. and smelly.)
July 2010

I remember distinctly some of the thoughts that went through my head the day that we went home from the hospital with the NG tube. It was Saturday, January 23rd, 2010. Raya had been in the hospital since January 18th and had gotten the NG placed on the 20th because she refused to drink the Pregestimil formula they had put her on. I didn't blame her one bit. The switch was necessary but that stuff was just plain foul, especially when compared with breast milk. I remember having to fight back tears as I sat in front of the computer in the hospital after googling how much Pregestimil would cost us if insurance decided not to cover it and just wanting to take her home and have things go back to normal.

By Saturday, Raya had conceded somewhat and was drinking the majority of her feeds by mouth and keeping a lot more of it down than when we had first come in. As much as I did not like that Raya was in need of an NG tube, I remember feeling a wave of panic come over me when one of the residents came in on Saturday and told me that since Raya was taking most of her formula by mouth, she was going to ask the GI if we could take the tube out before we went home. I think that moment of panic was the beginning of my process of accepting the feeding tube. 
Daddy & Raya, January 2010

For the first 2 months of her life, everything had been a struggle with her. I had struggled to get Raya to eat enough to grow. I had struggled to get her to keep down as much as she could of what she ate. I had struggled to control her wicked reflux. I had struggled to eliminate anything from my diet that could have possibly been responsible and quite honestly, had done everything I could come up with to try and help her, and most of it was unsuccessful. 
January 1st, 2010, about 7 or 8 weeks old
Low and behold, after 3 days on a feeding tube and specialized formula, she was almost a completely different child. Her reflux was not gone, her projectile vomiting was not gone, and she was unable to tolerate the breast milk I was trying so hard to provide her with, but she was a MUCH more comfortable baby. I knew that she needed the tube at that point and I was relieved when the GI said we would be going home with it. Not because I WANTED a feeding tube to be part of our lives, but because I knew it was the right thing for her at the time and I knew that as long as it was there, I could get whatever she needed into her. 
January 30th, 2010

I also remember thinking that we would probably use the tube for a couple weeks and then be done with it. She had improved so much in the 3-4 days that she'd been on the other formula that I really felt like the upward trend would continue once we went home and we'd be taking it out shortly after. Even so, there was a part of me that knew deep down that it would be more than a couple weeks. I never fathomed at that point in time that it would be 4 years later and she'd still be 85% dependent on it, but I had a feeling that it wasn't going to be a matter of weeks either. 

One of the feelings that I remember most clearly from that day was the shock of reality beginning to set in that this really was happening. Being trained on "dropping an NG" was one of my requirements before I could take her home. I sailed through it on the first attempt, thanks to nurses who were great teachers, but couldn't shake the thought that I couldn't believe I was doing this to my baby. Then the rep from the supply company came and dropped off the machine and supplies that would now take over my role as the provider of nutrition for my baby. If I had to sum up that day in one word, it would be OVERWHELMING. As we loaded up the wagon with all of the supplies we would be needing in order to continue feeding her with the NG tube once we were home, I couldn't believe that this was really happening. Really, an IV pole in my living room??
Getting ready to get outta' there!

I had tried really hard to pay close attention at the hospital when the nurses were explaining things to me, and I did have the little booklet they had given me from the hospital's parent information center that I had to read through & pass a little quiz on in order to take her home. I had also tried to pay close attention when the home health rep had dropped off the feeding pump. Regardless of how well I had listened, I was running on very little sleep and most of what I was hearing was new to me. The feeding pump was user-friendly enough but it did not come with an operator's manual. The quantity of formula she was getting through the tube was so small that using the pump to feed it to her felt pointless since half of it stayed in the tubing. A few days after we came home from the hospital, she got her little fingers caught on the tube and ripped it out. That was when our journey to find the ideal NG tube tape started since we found out that the only thing I had forgotten to bring home from the hospital was the tape they had been using there. Even the most minute details of life with the NG tube were a matter of trial and error. Things were hard.

As time went by, I figured out what worked for us and what didn't. I learned how to manage Raya's care better and with the help of a wonderful husband, learned to juggle taking care of Raya and our other 3 kids. We started to have more stretches of time where we didn't feel like our world revolved around Raya's medical life. We also started to feel more of a sense of normalcy surrounding Raya's medical life, and by that I mean that the medical supplies and equipment that had invaded our house no longer felt so foreign. It all just incorporated itself into our "normal" and I got to a place of acceptance. It didn't happen all at once. It is a process that happens little by little and sometimes starts back at the beginning and has to happen all over again. 

Acceptance is also NOT all-or-nothing. Some aspects of having a medically complex child are more difficult to accept than others. I think the first thing I had to learn to accept was that despite my very best exhaustive efforts, Raya just did not tolerate my breast milk, much less thrive and grow on it. With her being my 4th baby and having successfully breastfed the other 3, I did not expect for that to happen and was not prepared for the intense emotions that I experienced with the switch to the specialized formula that she needed. As we built her formula into our routine and I stopped agonizing over pumping breast milk that she couldn't have anyway, and as she began steadily gaining weight in spite of the chronic vomiting and reflux, I grew to love that formula. {but let's not confuse loving the formula with loving cleaning formula puke out of everything and prepping formula every single day since then...}

Accepting formula happened. Letting go of being able to give her breast milk happened. Feeling like the tube was just a part of her that had always been there eventually happened. Feeling like I actually knew what I was doing in caring for her eventually happened. Other things are still in process. Accepting the fact that she will have to depend on someone other than me or Donny at times to take care of her and someone else will take temporary charge of her health in a place other than our home has been hard. Sending her to school where I know they won't put her G tube in if it comes out was hard to accept {although the 9 hours a week of alone time has helped me come to terms with it} because even my 10 year old can handle that job and a simple tube pull-out could easily turn into emergency surgery. Knowing that the older she gets, the more time she'll spend in the care of others is hard to accept. Not having answers to the questions people ask me about how long she will need the tube and why she has the problems she has and knowing that there may not really ever be answers to all those questions is hard to accept. 

More so than not being able to answer other people's questions, it is hard to accept that we just don't know what the future holds for Raya. We know what is holding her back right now but there are no easy answers as to how to fix those problems. THAT is hard to accept. If there was one thing I absolutely did not comprehend at the beginning of our feeding tube journey, it was that the need for patience can span years. Quick solutions are a rarity in the medical world. The norm is "let's try this and wait and see if it helps," and that is VERY hard to accept.

Acceptance is not easy but it is absolutely important. Raya does not remember a time when she didn't have a feeding tube. That tube has ALWAYS been a part of her body. In fact, at preschool a couple weeks ago the teacher had the kids draw a picture of themselves. Her teacher told me when I came to pick her up that Raya had drawn an extra little circle on her stomach and said that it was her "tubie".  The feeding pump has been her constant companion since she was big enough to start wearing it in the itty bitty backpack at about 8 months old.
June 2010

July 2010
For me to be outwardly resentful towards Raya's feeding tube or anything that comes along with it would be sending her the message that I don't like part of her. I would never want her to feel rejected by me, especially because of something that is not even her fault. I think one of the greatest lessons I have learned in the past 4 years is that nobody should be defined by their limitations, or by what their perceived limitations are. It's easy enough to say that but it's entirely different to actually see it evolve before your eyes. I've been to literally hundreds of doctor and therapy appointments in the past 4 years. I've listened to medical professionals pick apart and analyze every little delay, defect, and dysfunction they could find. It's their job and it's a necessary part of the process. Raya hasn't seemed to pay much attention to them though. She just keeps on finding ways to do what she wants to do and be who she wants to be regardless of what obstacles are in front of her. What others see in tube feeding as a limitation or a reason to pity her, she sees as completely normal and not a big deal.
December 2013

Someday tube feeding will probably be a part of her past but not yet, and that's okay. Without the tube as a way to get full and adequate nutrition into her body, (if she had actually been able to survive without it) she would be extremely developmentally delayed, both cognitively and physically, due to the severe lack of nutrition. In essence, Raya quite literally would not be the little girl we know today without her feeding tube. It does not define her, but it sustains her life and supports her growth and development. With that perspective in mind, it is impossible for me to not love her feeding tube for all that it's done to keep her healthy and happy. I couldn't say that 4 years ago and mean it, but I truly can say it now. I ♥ A Tubie, both the girl and the tube itself!

Please join our family in celebrating Feeding Tube Awareness Week, February 9-15. This year's theme is "Nothing Can Hold Us Back" and more information about how to get involved can be found here:


  1. Thank you for sharing Raya's story with us/me. A friend sent me to your blog and I've been reading over your old posts.

    I have a four year old as well who, due to extreme prematurity, was tube fed for the first 2.5 years of her life. We're still overcoming food issues (growing tongue dexterity and strength, weaning off puree veggies, fruits and entrees, etc.) and it's always comforting to read someone's story and know we are not alone.

    So many take eating for granted and, well, it can just be monumental for some--like our girls.


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