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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Sunday, February 22, 2015

Baby sister turns 1

The day I left to fly out to Clinical Nutrition Week, my sweet baby Piper turned 1 year old. *sniff sniff* The last year has flown by even faster than I knew it would and it was really hard for me to not be sad about it in the weeks leading up to her birthday. Babies just don't stay babies long enough!

 We had some bumps in the road at the beginning with her but her first year has been a completely different experience for me than the other kids' were. It's hard to un-know the things I've become aware of since Raya was born, and that has made it hard for me to overlook a lot of things with Piper that I probably wouldn't have given a second thought to with the other kids, for better or worse. In some cases, that has been a good thing and in others, it has been the cause of stress and worry for me that I probably didn't need to have.
 Piper is such a sweetheart. She adores her mommy & daddy, and her big sister, Ashtyn. She loves playing with Cole and Kaida and she's learning to hold her own around Raya's endless energy. Raya can't help but smother Piper most of the time and Piper is learning to handle it. They are starting to play together more and it's fun to see them. They both disappeared on me a few days ago and it got very quiet, and when I went looking for them, they had emptied out a toy basket in one of the bedrooms and were happily playing in the middle of the mess.
 Having Piper has been like therapy for me. She has shown me that I am enough. She reminds me that I am a good mom and reaffirms for me that Raya's medical problems were not and are not my fault. I know it's not her job to do that, but taking care of her and seeing the world of difference between her and Raya in so many aspects has reminded me of that. Raya's problems were/are real. Sometimes it gets hard to shut out the doubts and questions of other people, but having a typically developing baby in our home again has made crystal clear to me what Raya's differences were. (in other words, Mommy's not crazy)
 Feeding Piper has been such a blessing. Things did not start out as smoothly as I had hoped with her. She had feeding difficulties at the beginning, and we still have some concerns that we will be looking into with a swallow study in the near future. As a result of her feeding difficulties, I have been pumping and bottle feeding her since day 2. It's something I've had to do for all 4 of our girls for varying lengths of time, but this time has been such a blessing. I would never change what I went through as Raya's mother, but being able to continue pumping past 12 months for Piper has helped me regain something intangible that was taken from me when breast milk was no longer safe for Raya and I had to stop nursing her for medical reasons. Piper is unable to tolerate dairy protein, so being able to continue pumping and feeding her breast milk is even more important to me right now. I've had people make comments to me about how amazing I am for pumping this long, but I am not amazing. I am grateful that my body has cooperated this far. It is an incredible feeling for me to be providing adequate nutrition to her and seeing her grow. She is still our second smallest of the 5 and is long and lean like the rest of them, but she's doing fine.
 This girl LOVES to eat! Due to things I have learned about digestion and being extra cautious due to our other kids' food allergies & intolerances, we have done things completely different with Piper than we did with the other kids. This pink birthday cake was pretty much her first (and only) exposure to wheat. She has had a variety of fruits and vegetables, broths, beans, and meats, and she has yet to turn her nose up at anything we have fed her. We are starting to introduce some of the easier-to-digest grains in small quantities to see how her body handles them. Dairy is still not her friend, and neither is raw banana. She has been hit hard this week with the same environmental allergy symptoms that everyone else in our region has been hit with, thanks to the early spring and the wind. I foresee a trip to the allergist in her future, but we will wait a bit longer before we do that.
 Piper has been on her own time schedule since the beginning. She has a very laid-back, chill personality in every way. (except when it comes to her food) She is not in a hurry to hit her gross motor milestones. It was just about 2 weeks ago that she decided she was ready to leave the army crawling behind and start crawling on her hands and knees. She can pull to stand but she doesn't cruise yet and walking is not even on her radar right now. (and that's okay, she'll do it when she's ready) She is a pretty serious kid and it takes a lot to get her giggling but she is mostly content and happy. As long as she has a full belly and 1 or both of her favorite blankets, she is a happy girl.
This girl likes her bed. A lot. She does not sleep anywhere but in her bed, and she has a specific routine that she likes to follow. Our other kids have not been as self-structured at this age as she is but she most definitely likes things to be a certain way and doesn't like to stray from that. She is not a snuggler but when she decides she wants to, she will sit on my lap and suck her thumb and snuggle with her blankets. Those are the moments when the rest of the world disappears and all that matters is her. I have cherished those moments with all of my babies.

Her favorite things to play with lately are Raya's feeding pump, backpack, tubing, and most recently, her G tube. Piper discovered it after Raya got out of the bathtub yesterday and was quite fascinated with it. Raya thought it was funny until Piper started to try and grab it. Speaking of Raya, guess who kept trying to photobomb the birthday pictures...
Piper is helping Raya to learn that not everything in life is about her. It's a hard lesson for a 5 year old!

Piper Junie, you have changed my life, changed me as a mother, and filled a hole in my heart that I didn't know was there. I just can't get enough of you and I can't imagine our family without you in it. I love you more than words can say! Happy birthday, cuteness!

Thursday, February 19, 2015

ASPEN Clinical Nutrition Week 2015

This past weekend, I had the privilege of traveling to Long Beach, California to attend ASPEN's Clinical Nutrition Week convention with the Feeding Tube Awareness Foundation. After a very stressful week last week, I was SO ready for a vacation all by myself! It started off on a great note too. The plane was teeny but there was nobody in the seat next to me so I got to stretch my legs out as much as I wanted.

I was more productive during my hour long plane ride than I've been in any other one hour period in recent history because the only interruption I had was the flight attendant bringing me a beverage. I welcome that kind of interruption. I got several lists made and just got to take some deep breaths and let go of the stress from the week.

This is the 4th medical conference I've attended for the purpose of promoting the Feeding Tube Awareness Foundation and I am hooked. I absolutely LOVE the work we are doing! I also like it when I get my name badges and they say things like this:
Not entirely sure how I got put into the PhD/Researcher category but it looks nice next to my name. Maybe someday...

My friend/colleague Traci (the founder of FTA) and I spent most of our weekend running a booth in the exhibition hall where we had the opportunity to talk to hundreds of clinicians (doctors, nurses, and dietitians) about the mission of FTA. Here's the booth:
(picture courtesy of Traci)

We also had a little bit of down time on Sunday and that gave us time to walk down to the pier and enjoy the beautiful weather.

And now for the news.
*Disclaimer: what I'm about to say does not answer ALL of the unanswered questions about ENFit but it does answer a couple of them*

The big, wonderful, fantastic, exciting news is that we have now SEEN a 60ml ENFit O ring syringe. They DOOOOOOO exist, just like we hoped they would. Unfortunately, NeoMed has not received final FDA approval for them yet so we were not able to take a picture of the prototype, but rest assured there ARE going to be ENFit O ring syringes. According to the reps we talked to, NeoMed syringes are already available through most of the major supply companies and will continue to be available through those companies during and after the ENFit transition so those who are doing blenderized diet with O ring syringes, you WILL be able to get them.

Another exciting bit of news to report is that we have also seen 2 different prototypes of medicine bottle adapters that will work with ENFit medication syringes. The 2 we saw were very different from each other. One was a very simple design. It was a screw-on cap with a small peg on the top (like the tip of a slip tip syringe) and the ENFit syringe would fit over the top of the peg. The other was a lot more complicated. It was made out of a rubbery material and had a cone shaped piece that fit down into the bottle, and then an ENFit connector attached to the top that the ENFit syringe would screw into. Either way, there ARE medicine bottle adapters for ENFit syringes. It is hard to be patient and live with the unknowns of the ENFit transition, but most of the products that we all have questions about (i.e. syringes and medicine bottle adapters) are still pending FDA approval and that is why we have not seen information released yet. We did see these prototypes at CNW though, so they really do exist!

*Update: thanks to Abby at ThriveRx, here is the Covidien medicine bottle adapter:

We did get to see (and take pictures of) a few ENFit products. Boston Scientific had a sample of a Y port extension that will be coming out when they release their new low-profile balloon button this summer. The extension will be compatible with the MicKey button and the AMT Mini One button as well. They also had a couple of adapters. One was ENFit to catheter tip, which will allow people to connect the adapter to an ENFit extension tube or feeding tube and use a catheter tip syringe with it. They also had an ENFit to slip tip adapter, which will allow for the use of current slip tip syringes for meds. That should help ease the transition to finding ENFit medicine syringes and bottle cap adapters. Here are a few pictures of the items Boston Scientific had on display:

We also got to see the Corpak Farrell Valve bag with the new ENFit connector on it. Here are a few pictures of that. Here is the Farrell Valve connector with a transition adapter, which is how they will be delivered during the first stage of the transition:

Here is what it looks like without the transition piece:

And this is what it will look like when there is a feed set connected to the Y on the Farrell Valve tubing:

We had some great conversations with clinicians and reps from some of the companies that manufacture and distribute feeding tube-related products. We wrapped up an amazing Feeding Tube Awareness Week while we were there, and I am excited to see where things go for FTA in the next few months!

Friday, February 13, 2015

FTA Week 2015: Feeding Tube Fun

Today's theme is "Feeding Tube Fun". I think sometimes that's a bit of an oxymoron but we have sure had a lot of funny moments in the last 5 years with tube feeding.

One of my favorite stories was the time we went out to eat to celebrate one of the older kids' birthdays. We went through the usual, "No, we don't need to order anything for her, she doesn't know how to eat yet." conversation, and then Raya started to get impatient. She had been a little testy this evening due to the runny nose that hit her today and got a little upset that I wouldn't just hand my glass of water over to her. In order to keep her happy until our food came and we could give her a french fry to stuff in her mouth, I gave her a 60 ml syringe with a little bit of water in it. She's pretty good at drinking out of it but we had to work to keep her from accidentally unloading it all over everybody around us.
She'd been playing with it for a few minutes when she accidentally dropped it on the floor. Right then, a lady who was walking by saw her drop something and was kind enough to pick it up. As she reached out to hand it to me, it suddenly dawned on her that she was holding a giant syringe that a baby had just been sucking on. Her facial expression instantly changed from that of a happy nice person picking up what the baby dropped to equal parts shock, fear and disgust. Her face froze that way and she cocked her head to the side and opened her mouth a little, as if she was going to say something but nothing came out. She was completely dumbstruck. I smiled and thanked her and she turned and scurried back to her table. As soon as she was gone, Donny and I looked at each other and erupted into uncontrollable laughter. I still laugh every time I think about it. I wish I could have gotten a picture of her face and goodness knows what the poor woman must have been thinking! 

We've had so many funny things happen involving the feeding tube, and it's hard to remember what life was even like before tube feeding was part of our lives. We've had pump bags explode on us in public places, G tubes leak from one end of Target to another, more public vomit episodes than I can even count, and our kids think it's normal to say things like, "Raya, you need to be plugged in." and "Mommy, Raya is beeping again."  It's a different life but it's a good one.

Thursday, February 12, 2015

FTA Week 2015: Celebrate Success!

success: (noun) suc cess: the correct or desired result of an attempt

Measurement of success is subjective. One person's idea of success may be completely different than another's. In regards to feeding Raya, my idea of success has changed over time. Early on in our journey, I thought that success meant getting Raya off of the feeding tube. There are people and organizations that operate under this sweeping generalization, but there is so much more to "success" than just getting off of the tube as quickly as possible.

When you are on the outside looking in, it can be very difficult to understand what the journey is like. While I was training to run a marathon a few years ago, I had conversations with several people who had run marathons before. They told me stories about their experiences in training and running the actual race and I had an image in my mind of what those things may have looked like. In a small way, I could relate to their experiences because I was running a lot and dealt with similar things on a smaller scale, but I had no frame of reference for what it was like to run for 26.2 whole miles in a row because I had never done that.

In marathon running, of course the ultimate goal is to cross the finish line, but actually getting to that point involves a long series of small victories along the way. For me, it was things like making it up a 3/4 mile hill without walking, staying with my running partner as long as I could, eating small snacks & taking drinks without overdoing it and getting sick, and most importantly, hitting the times I needed to at each mile marker in order to finish in the time I wanted to. It's not JUST about getting to the finish line! Getting there is the ultimate goal, but HOW you get there is just as important.

Thinking about feeding Raya in similar terms has helped me to have perspective. When all you think about is the ultimate goal of not needing a feeding tube anymore, life gets very depressing. The reality is that even "temporary" tube feeding can last years, and when you're looking at a finish line of tube removal that seems light years away without seeing the small victories right in front of you, it is hard to see the progress you're actually making. I thought it might be nice to share some of the successes we have seen over the last 5 years of tube feeding. My hope in doing this is that other people will be able to recognize their small victories as well, and realize that even when the ultimate goal of 100% oral eating feels like it is unattainable, the small victories mean inching closer to that goal.

Success #1: being allowed to leave the hospital with her! I passed my NG tube 101 training and convinced the staff that I was capable of handling a tube fed baby at home, even if I didn't really feel all that capable at the time.

See that awful tape job? That was the first time she pulled the tube out at home and I had to put it back in. It wasn't pretty but we got it done and I got pretty dang good at dropping that NG, and I got really comfortable handling a baby with an NG tube. (and yes, so far these successes are more about me than her, but me being successful = her getting fed, so same thing)

At 3 months old, Raya had adjusted to the second formula we tried her on and started gaining weight again, despite still vomiting and spitting up a lot. Success then meant getting her back into the 5th percentile on the weight chart!

At 7 months, she was at a healthy weight and had made some progress on the skills that she had been delayed in. Even though she was still throwing up a LOT, she was much healthier than the weak, pale, sickly little baby she had been before the tube.

She got to where she could handle having non-food objects in her mouth, like the handle of a battery-powered toothbrush, and we were able to do a little bit of practice tasting food. She wouldn't swallow it, but if I only did a tiny bit at a time and didn't push her too hard, she also didn't gag and vomit. At the time, I was thrilled to see her get to that point but I was also sad to see how hard it was for her to deal with, and it broke my heart. It didn't FEEL like a success, but getting her to tolerate those small and simple things was another very important milestone in the process and it was most definitely a success.

We made it through a rather rough start to having a G tube. Our G tube surgery experience was not typical and we were really just happy to get past it. And past the 3 months after that, really. It wasn't pretty, and getting through that rough patch without losing our minds was a success.

Our first accidental G tube pull-out happened 2 1/2 months after her surgery, and even though the adrenaline was pumping, I got it back in without a problem. That was success.

We survived our first airplane trip and our first out-of-state medical testing trip.

One of the most exciting moments in her first couple of years of life was right around her 1st birthday when she decided she liked bacon. She put bacon in her mouth willingly, and actually enjoyed it. That was the first food she ever liked, even if she wasn't able to actually eat it at the time.

That one speaks for itself. After having been NPO (nil per os, Latin for nothing by mouth) for most of her first year and wanting nothing to do with liquids in her mouth, failing and then passing a swallow study, I was thrilled beyond words to see her want a drink of water and then actually swallow some without choking on it. I may have even shed a tear or two and taken a video and about a dozen pictures. That was a HUGE milestone in our journey towards the ultimate goal of not needing the feeding tube. It was the result of another HUGE milestone, which was the point where she stopped vomiting several times a day.

She ate beans. Then she ate pureed oatmeal. Then she ate a Dum-Dum. And drank more water. The amounts were small but still significant and still very much a success, and a big step towards the goals of increasing her caloric intake and the variety of food she liked.

Her first ice cream cone. (before we knew she was allergic to dairy) It was the first time we had ever taken the kids out somewhere and bought food for Raya too.

We survived a 4 month sabbatical from eating food and reacted very positively to being able to eat again. Success and success!

In spite of setbacks that took us back to 100% tube feeds and almost nothing by mouth, we have made big steps forward again in the past month or two. She is back to asking for food 3-4 times a day and is almost eating enough to start counting the calories again. (I don't count them if it's less than 100) She is also back to 3 bolus feeds a day with the rest fed continuously, and that is a HUGE step forward from where we've been. Each time we have added a bolus feed and she's tolerated it, it has been another success to celebrate.

We have so much to celebrate. Life is not what I pictured 5 years ago when my tiny 3 month old was struggling, but life is good. She lives life fully, and she does not let a feeding tube slow her down.

Someday, Raya will probably be a "tubie graduate". She probably won't need her tube anymore and we will start a new chapter. Until then, we will continue to set smaller goals that will take us closer to that ultimate goal. We will keep celebrating the successes, learning from the setbacks, and working together to balance pushing her toward her goals with preserving her happiness and quality of life. (piece 'o' cake, right?)
Success does not equal getting a child off of a feeding tube, as I had thought in the beginning. Success means a healthy, well-nourished child, and while we do hope and believe that Raya will someday be able to leave tube feeding behind her, that is not the only definition of success.

Tuesday, February 10, 2015

Tube Feeding: Debunking the Myths

Today's Feeding Tube Awareness Week topic is:
Today, we focus on correcting the myths about tube feeding. It is an opportunity to share the "truth about tube feeding." Tell us what you wish people understood about tube feeding. Share on your social media pages and blogs about what people need to know, and then please link your blog in the comments to this post. 

 There is a lot of misinformation floating around about tube feeding. When I hear some of the things that have been said to other parents, I feel really lucky. Most of the things that I've heard that have hurt my feelings or made me sad have been more the result of someone saying something or asking something out of not being aware or understanding tube feeding, and it hurt because of the place I was at mentally and emotionally at the time and not so much because of anyone deliberately trying to hurt my feelings or be cruel.

Here are some of the common misconceptions about tube feeding:
  • Feeding tubes are an end-of-life thing.
    • Truth: Feeding tubes can be an end-of-life thing, but for many like Raya, they are a beginning of life thing, meaning that when they start getting adequate nutrition & hydration through the tube, they can actually start living rather than just struggling to stay alive.
  • Feeding tubes restrict activity
    • Truth: If you have seen anything on my blog at all, you'll know that an active lifestyle is very much a possibility with tube feeding! While it can be true that tube feeding requires some accommodations, there are ways to work around feeding schedules and protect the tube itself so that there are very few physical limitations due to tube feeding. It also depends on the individual's needs. When Raya was on 20 hour a day NG tube feeds, it was difficult to do things like take her swimming because we couldn't disconnect her from the pump while we swam so we had to stay near the side of the pool, and if the tape got wet, it would come off and her NG tube would come out. (it happened.) It didn't mean we couldn't take her swimming, it just meant that we had to work around her tube and pump.
      At the moment, there is only 1 activity that I don't let her do with her pump on, and that is jump on the trampoline. Those pump bags are plastic, and plastic has more limitations than my daughter does.
  • Feeding tubes reduce the ability to learn
    • Truth: This could not be further from the truth. I find it hard to understand how anyone could really believe this to be true, but it came straight from a publication by a company that shall remain nameless. When tube feeding is done right, meaning that when parents and doctors work together to find a source of nutrition, feeding method, and feeding schedule that results in well-tolerated tube feeds and healthy weight gain, the exact opposite is true. A comfortable and well-nourished child has a better shot at learning than a child who is malnourished. There is just so much more to the equation than this overly simplified and completely false statement suggests. When a child can't get enough nutrition orally to thrive, being able to fill those nutritional needs through tube feeding INCREASES his or her ability to learn by fostering healthy brain development, as well as overall health of the child.
  •  Feeding tubes mean no eating by mouth
    • Truth: The feeding tube in and of itself does not prevent a person from being able to eat by mouth. The condition that makes tube feeding necessary is what may prevent a person from being able to eat by mouth. Some people with feeding tubes can't eat or drink anything by mouth, and some people can eat and drink the majority of their dietary needs by mouth. There are over 300 medical conditions that can make tube feeding a necessary part of life. Tube feeding is not all or nothing. Some people with feeding tubes can't eat, and some people with feeding tubes can eat. Of those who can eat, some can eat a lot and some can eat a little.
  • Feeding tubes prevent children from living normal lives
    • Truth: In a certain way, this is true. "Normal" for most people does not include feeding tube supplies. It doesn't include frequent doctor visits, monthly supply deliveries, or hours on the phone with insurance companies. However, "normal" does not equate to "good". The same publication I mentioned earlier from the company that shall remain nameless claims that children with feeding tubes cannot possibly live good, happy lives, and that tube feeding equates to misery. I don't believe that for one second. There may be some aspects of Raya's life that fall outside of society's definition of normal, but she leads a full and happy life. She goes to school, plays with her friends, participates in snack time (even if she's not actually eating), helps with chores around the house, participates in family mealtimes, and does not see herself as any less than normal.
  • Feeding tubes are permanent
    • Truth: Not all individuals with feeding tubes will have them indefinitely. Many only need tube feeding on a temporary basis of a few weeks, months, or years. Some will need them for life, due to whatever conditions made it necessary to tube feed.
  • Children should be weaned off of feeding tubes as quickly as possible
    • Truth: Children deserve to have a safe and positive relationship with food. Pushing too hard, too fast and/or without fully investigating the root of the child's feeding difficulties does not foster that safe and positive relationship with food. Some children need time to develop the strength and coordination that it takes to safely chew and swallow food and drink liquids without aspirating. Others need time to overcome sensory issues, food aversions, and oral aversions at a pace they are comfortable with. Some will always need the tube for a portion or all of their nutrition and hydration, and as such, should be allowed the quality of life of being able to explore food at their own pace. There are people and organizations out there who try to make parents feel like they are failing their children if they allow them to be tube fed, and that if they don't rush to wean them from the tube as quickly as possible, they are damaging their child. It is completely unfair to put that kind of pressure on parents, and just plain wrong to try to force tube weaning on a child who is not ready to be taken off of tube feeds.
  • Feeding tubes are scary/bad/negative
    • Truth: When you take the time to learn about tube feeding and understand the reasons why your loved one needs a feeding tube, you will understand the positive side of tube feeding. Without a feeding tube, your loved one would not be who they are today, and may not even be here with you today. If you are uncomfortable with your loved one's feeding tube, ask questions, but do it in a kind, non-judgmental way. Familiarize yourself with the feeding tube and associated supplies. You may never love the feeding tube, and you may never be happy with the fact that your loved one needs a feeding tube, but you owe it to him or her to become comfortable around it. It is a part of who they are, and it keeps them nourished. 
Tube feeding isn't always pretty. Sometimes it's downright gross. I can't tell you the number of times that I've had to wash my hands this week to get the stomach smell off of them after one incident or another. There are a lot of unpleasant things about tube feeding, but in our case, the alternative is starvation and/or extreme malnutrition and severe dehydration, so I'll take the tube over the latter. Tube feeding saves lives, and my life has been immeasurably enriched by the lives of the people I have met because of tube feeding. The truth is, tube feeding is a beautiful thing.

Sunday, February 8, 2015

Kicking off Feeding Tube Awareness Week 2015!

I feel like I say this every year but Feeding Tube Awareness Week really caught me off guard this year. It has a way of sneaking up on me! Last year we had just gotten out of the hospital with Raya and were getting ready to have a baby during FTAW, and this year I'm getting ready to go to another conference to represent the Feeding Tube Awareness Foundation and my baby is turning 1 this week. {why does babyhood have to go by so stinking fast?!?!}

You know what else caught me off guard? Having a baby that needed a feeding tube! That came out of nowhere, or at least I felt like it came out of nowhere. Raya was born full-term at a weight and length similar to her 3 older siblings. Things weren't perfect with her from the beginning, but nothing seemed to be terribly wrong either. She started out similar to her older sisters with the spitting up, lack of enthusiasm about nursing, and fussiness. Then she was vomiting. Not just spitting up, but full on, gagging, retching, heaving, VOMITING. The day I took her to her 2 month well-check was the last day of "normal" for me as a mother. {wow, I have never thought about it like that until just now!}

The last day of "normal"
The next day, we were sucked into a vortex that was unlike anything we had ever experienced, and from which we could not escape. (That sounds so dramatic but it FELT dramatic too.) That was when we went from the "we just had a baby and we have 3 other kids" kind of busy to "holy crap, what is happening here?!?" WHIRLWIND kind of busy. One day, I was taking my baby to the pediatrician to talk about trying a different reflux med and the next day, I was sitting in a GI doctor's office hearing that we were dealing with more than just reflux. It was the first time I had ever heard the word "hospital" in the same sentence with any of my children's names. I suppose we were lucky that way with our other kids being healthy aside from the usual childhood stuff.

Today's #feedingtubeawarenessweek topic is:
Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.

The original reason Raya got a feeding tube was because she stopped eating. She did not stop eating to be ornery. She did not stop eating because she was being difficult. She did not stop eating because she was rebelling against our parental authority. She stopped eating because eating made her miserable. Breast milk made her hurt. Formula made her hurt. Vomiting made her hurt. Reflux made her hurt. EATING made her hurt, so her instincts told her to stop doing it. If you reach out and touch an electric fence and it zaps you, you learn not to touch it again. That is an inborn survival mechanism that warns us of danger and keeps us safe. It was not her fault she stopped eating, and that was a warning sign to us of just how awful she was feeling. The fighter in me wanted to resist the feeding tube so that I could prove that I was a good mother, as if having my baby need a feeding tube somehow meant that I was not a good enough mother. Not good enough to do the most basic and most vital job that a mother does for her newborn baby: feed her.

But you know what? Having my baby need a feeding tube had NOTHING to do with my abilities as a mother. I was a good mother to her and Donny was a good father to her and we worked hard to take good care of her, just like we had done with all 3 of her older siblings as newborns. It wasn't that I didn't know what I was doing. It wasn't that I hadn't tried hard enough {because the good Lord knows that I had tried EVERYTHING!}. It had NOTHING to do with me. There were things going on inside her body that we did not understand, and even if she had not gotten the tube at 2 months, it would have still happened at some point because it was inevitable with her medical conditions. The difference is that because we intervened early on, we were able to optimize the nutrition she received and prevent her from being further delayed in her brain development by using a feeding tube to supplement what she was able to take by mouth.

Early on, we didn't think she would need the tube for very long. Maybe her doctors knew she would, but I didn't understand that at first. The question I am asked most often about Raya is, "Will she always need the feeding tube or is this something she will grow out of?" We have struggled for 5 years now to figure out what "this" was. As it turns out, "this" is a combination of many factors that will make getting to a point of removing the feeding tube a difficult and long process. I do believe that Raya will be able to be tube-free someday, but that day is not going to come in the foreseeable future. If I had to guess, I would say that there's a good chance that she could learn to manage her conditions by the time she is a teenager and no longer need the support of the feeding tube but it could be sooner and it could be later. It has taken me a long time to be able to say this and not feel like it's a dagger in my heart, but we are not worried about it because the feeding tube is not the worst thing to happen to her. It is the BEST thing that has ever happened to her! NOT having a feeding tube when she was in dire need of its support as an infant would have been the worst thing to happen to her. We have adapted, and although she struggles with certain physical and emotional aspects of her life, she has never known any different and she is happy with her life just the way it is.

There are literally hundreds of conditions that can result in the need for tube feeding. Some are temporary and some are not. What parents of children who are tube fed want people to know (and also those individuals who use feeding tubes themselves) is that feeding tubes are not the enemy. Feeding tubes are not a sign of bad or lazy parenting. Feeding tubes keep people alive who would otherwise not be able to survive, and they improve quality of life for those who are in need of a boost. The way Raya's older siblings explained it to their friends at school is this: Some people need a wheelchair to help them get around. Some need hearing aids to help them hear. Some need glasses to help them see, and some people need feeding tubes to help them get proper nutrition. It's as simple as that. {not to be confused with LIFE with a feeding tube being that simple, because it most definitely is not!}

Even though I had no idea 5 years ago that we would still be using a feeding tube, we are happy to be celebrating another Feeding Tube Awareness Week and sharing our story with anyone who will listen.

For more about Feeding Tube Awareness Week, visit

Friday, January 30, 2015

A bit of January

Since I haven't done much updating this month, I thought I'd throw it all in one post.

Little Bit started figuring out how to knee crawl just before her 11 month birthday. 2 weeks later, she still mostly army crawls but she's starting to knee crawl too.
She also discovered that she loves the ball pit at therapy. Given that it took us somewhere between 18 months and 2 YEARS to get Raya in it without having a cow, I didn't expect her to like it but she did. I laid her on top of the surface and she just laid there, completely still. She slowly sank down into the ball pit and had a great time grabbing each ball that rolled into her face and flinging it. She also enjoyed kicking her feet. Even when her face and body were completely covered, she was still happy and didn't get scared or cry. That's the kind of experience that reaffirms for me that Raya has just been wired differently since before she was even born.

We were able to get Raya fitted for a new medical stroller that will be similar to this one, only pink:

We have GOT to start putting baby toys in the diaper bag so that Piper doesn't have to keep playing with feeding tube supplies to keep her occupied during church. Although she probably prefers the feeding tube supplies anyway.

We just changed to the 8:00 time slot and let me tell you, getting 5 kids and 2 adults out the door for 8am church has been a beast. I think the closest to on time that we've been is 8:15 and I was pretty proud of us that day. I haven't found my rhythm yet with getting all of Raya's morning meds & formula bolus prepped before church, pumping a bottle for Piper, getting myself and 2 little girls dressed and doing several people's hair. Oh, and breakfast for me has not happened yet. Clif bars and Odwalla bars have kept me alive for the past year or so. Last week, we were in our seats at 8:30 and then had to give Raya her meds. Normally I take her to the nursing mothers' room so we don't make a spectacle of ourselves but since we had JUST gotten there, I figured what the heck, we'll just do it right here.

We had a run-in with influenza A last week and I was reminded last how much I dislike going to the pediatrician's office and why we avoid it like the plague. If we had hazmat suits, I would make all of us wear them when we go there.
It's silly to have a "sick room" when you have to walk through the regular waiting room in order to get to the sick room, and when people keep their sick, hacking, phlegmmy little kids in the regular waiting room. People looked at me like I was some kind of monster for sending my sick child in the sick room alone but I wasn't about to go in there myself, or take my 2 healthy kids in there to wait. I was worried that it would ravage through all 7 of us but Tamiflu and our awesome quarantining skills kept it isolated to 1 of the 7. Not gonna lie, I'm pretty proud of that. (knock on wood...stay healthy, kids...) Thankfully, the child that got sick was not one that has had any chronic respiratory issues and the Tamiflu and other stuff we used really did make a difference and turn things around quickly. Thank God for modern medicine.

We got the game "Scattergories" for Christmas and the kids LOVE it. We've had so much fun playing it with them. Raya is too young to play but she likes to sit at the table with us and write on a Scattergories paper just like the big kids. Since we always play after dinner, she usually falls asleep while we're playing. I just love sleeping children. Few things are as beautiful as a sleeping child. The past month has been a struggle for her (and us) in a different way than we've had before, so having her calm, quiet, and peacefully sleeping is a beautiful thing for all of us.

We've had a bit of a problem with a certain little redhead stealing her baby sister's special blankies. She has plenty of special blankets of her own, but Piper's blankets are "super soft and cozy" and she really REALLY wants them. The solution we came up with was for Raya to do jobs to earn money so she can go to the store and buy her own blanket like Piper's. It's definitely more work for me to supervise her with all these jobs but hopefully she is learning something. Her first one was to scrub a frying pan that the big kids had forgotten to wash when they did the dishes. She needed a lot of coaching but she did a great job!
She also helped me pull weeds in the garden. There were more weeds than vegetables and it was a big job that we didn't finish before all the rain started, so there will be more next time we go out, I'm sure.

Last week, we went to a friend's house after school and they just got a soft, fluffy kitty for Christmas. My child who thinks she is a kitty was beside herself and could not get enough of him! She told me on the way to school this morning that she wishes she had a magic wand so she could make herself a real kitty.
The other little girls were pretty enamored with him too.

Speaking of thinking she's a kitty...  Sometimes I walk into the kitchen and find things like this:

In other news, we have had some good meals lately where she eats enough calories that I should probably be counting them and deducting formula. I made beef stew for dinner one night this week and she ate about 1/4 cup of it. I absolutely LOVE when I am able to make something for dinner that she can eat along with us. It's not an easy task with the things she is allergic to but I'm working on it.

After some discussion about everything we learned from the motility testing last month and what we know about Raya after working with her for 5 years, her feeding therapist and I decided that now is a good time to start pushing her again. We are pushing her on the variety of things she is eating and pushing a little more on the quantity, although we are still sensitive to how she is feeling when she eats. This week, I brought a diced peach fruit cup for her to eat. She wanted a baked potato like always, but I really want to get her out of the baked potato rut so she doesn't end up developing a reaction to them. She likes peaches and she has eaten them before but I knew it would be a challenge for her. I opened the cup and drank half of the juice out of it so it would be easier for her to get peaches out without spilling.

I was right about it being a challenge for her. By the time we finished the session, she had eaten about half of the fruit cup, which was great, but it was really hard for her. She gagged a few times and if she saw any juice on the spoon with the peaches, she really struggled to make herself eat that spoonful. She did a great job though and we were both very proud of her. It's funny, the way I feel when I watch her have a good day at feeding therapy is the same way I feel when I watch one of the big kids nail their forms in a karate tournament. She has to work SO hard to make herself want to eat. On the way out of the clinic she was excited about the Rudolph stamp on her hand and was chattering on about how she worked really hard so she could make Miss Heidi proud of her and make me proud of her. It melted my heart a little but also made me think about the importance of teaching her that making other people proud is nice but that she needs to eat for nourishment, not to make other people happy.

 Moving on...
Yesterday we had our first accidental tube pull-out since probably October or November. Raya thought it was pretty funny, but she thinks everything is funny lately. She was messing around, probably pretending to be a puppy or a cat, and pulled the whole thing out of her stomach. Thankfully it was in between a bolus and her continuous feed so she didn't leak stomach everywhere this time.

 And then we have this sweet girl, whose skin is giving her troubles. Sad panda.
 We're not totally sure what's going on with her but we think it's food-related so we're doing what we need to do to figure it out. Everyone who has seen it has generously offered me theories about what it is and what will cure it. haha. Thankfully, it has gotten MUCH better since I took those pictures on Sunday and Wednesday.

I had a friend tell me recently that she had seen something I posted on facebook about how well Piper was doing with eating solid food, and it had made her jealous/sad/angry. She has one child with eosinophilic esophagitis and a baby that is suspected to have it as well, and they have struggled with food with their baby. She didn't mean that she was jealous/angry at me, but just frustrated that they were going through much of what they'd gone through with their other child all over again and she wished she could say the same things I was saying about how great things were going. I totally get that. I remember feeling the same way while I sat in church watching my friends feed their kids Cheerios and crackers to keep them happy & quiet and not have to clean up vomit.

The truth is, I do have some concerns about Piper and she does have some issues, I just haven't been vocal about them like I have with Raya's because they're not to the degree that Raya's have always been. With Raya, it was clear and obvious that she had something very wrong and needed intervention. And truth be told, I've gotten enough unsolicited opinions in the last 5 years to last me a lifetime and I really don't need it this time around. With Piper, everything that has come up has been met with, "We'll keep an eye on that and see what happens." So that's what we're doing. I've been taking advice from sources that I am comfortable with and I think we've managed pretty well. Suffice it to say that my mind does not work the same way now that it did before Raya was born and that is both a blessing and a curse!
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