hope4haven

Where four years have taken us.

In Uncategorized on February 17, 2016 at 1:03 am

I can not believe it has been 4 years since my last post. A friend just updated her tubie’s blog and I replied that I guess as tubie life became routine and I became more secure in my parenting instincts, I didn’t need the blog like I did then. I truly needed this place to tell our story. I needed this place to speak my mind when I had to stay quiet as everyone told me I was doing it all wrong. I needed this place to just let it all out. As I read over my posts, I can see how much I needed it and how many emotions were backing the words on the screen.

On to today. Haven is 7 1/2 now. She is THRIVING. Do you hear that?? THRIVING! It’s hard to count the blessings! She teeters between 46-48lbs. She is 46″ tall. She is in 2nd grade and while there are struggles, she is extremely smart.
Let’s see. When she was 4, Haven was diagnosed with Autsism Spectrum Disorder, Sensory Processing Disorder, oral feeding disorder, and anxiety disorder. It was a stressful time, but having the medical backing has helped in getting her the services she needed.
So the big question…is she still tube fed? Is she eating? Yes and yes. She still receives the bulk of her nutrition via her feeding tube, but life really changed a little more than a year ago. We had taken three years off of feeding therapy, for mental reasons and because insurance would not cover it. at the beginning of 1st grade she started back to feeding therapy, as were able to get a grant now, having a diagnosis. I believe it was a combination of being older and it just being the right timing, but Haven began to eat! It was beyond shocking to me, as I had to come to accept that she may never eat and that she would be perfectly fine if that were the case.
Let me back up one sec. Very shortly after my last post, we switched Haven to a blended diet from the formula diet. We had no support from her GI or nutritionist, but I knew what my girl needed, and pedialite was not working. Immediately she went from throwing up multiple times a week to never throwing up at all!!!! Literally, she threw up twice in the first year we switched to blended food, once because she was too hot and fed too fast, and once because she was sick. It was like night and day!!!!!
I was able to trial foods and find what helped her little tummy and what hurt it. She was also able to go off all Miralax for her constant constipation because we removed dairy from her food. She went from two adult doses per day, to nothing and we have never had another problem with constipation! She had gotten to the point where even the 2 caps a day weren’t always enough, we had to do clean outs every 2-3 months on top of that.
So, no more throwing up, no more constipation, and this is when she began to thrive! While on the pedialite, she gained but she was always behind her friends. She was two or more sizes behind them in clothing and shoes and always shorter. After we switched to the blended food through her tube, she grew like crazy! She just looked like a whole new kid! She is now one of the tallest of her friends, in the same size clothes and shoes, she is just one of the typical kids.
Back to feeding therapy. I got off on that tangent because I don’t think she would have been ready for real food had we not made the switch to blended food because she would have still been in too much pain from the effects of the formula.
The type of feeding therapy was also different…tho unbeknownst to be at the start. In all the years we had been told to NEVER force feed her orally. Well, on the first visit, that is exactly what the therapist did. When I saw my child splotchy from tears and beside herself, I wanted to run and never go back. After I cried for two days, I stopped to notice that Haven was not traumatized, like I was. Ha! I asked her about the experience and while it was definitely not fun for her, she saidthe woman was nice, and she did want to go back. Mind blown. Tentatively, we returned, and step by step, Haven began to eat. Haven began to eat. Words I never thought would come together.

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I will just skip to now. Haven loves a huge variety of foods! Her issue is quantity and speed. Oh how painfully slow she eats!! It is still a constant prodding of, take another bite, are you chewing, chew, you’ve had that bite in your mouth for five minutes. And she eats about the amount your typical 2 year old might. Her feeding therapist wants us to push and to cut back drastically on feeds, but I am fine going at Haven’s pace. We have reduced one feed per day and I typically reduce two more feeds by one syringe. While her feeding therapist doesn’t agree (Hi Irene), the removal of food has never been a motivator for Haven. And I will note that “force feeding” is probably not the name of the technique Irene used…but as momma, that is what it was to me. On day one I believe Haven ingested half a Popsicle (which cold/frozen foods were hell to her) plus two other foods. That was more in 45 minutes than she had ever had orally in her 6 years of life. The method seemed like madness to me, but the place we are now is a good place and Irene, you have been a huge help to us!

Haven receives a tube feeding before school, twice at school daily, she eats lunch orally in the lunchroom with her peers (again, the slowness factor is what holds her back here), she then eats dinner orally at home and has a tube feeding before bed. I had hoped to reduce her school feeds now, but we are currently struggling with anxiety and issues at school that prevent that from happening right now. My hope is for a great reduction over the summer. We’ve talked about it and she agrees that would be for the best going into the third grade so she won’t miss so much class time.

Overall, Haven is a happy, healthy, wild and crazy, very unique and self secure little bit of heaven! She lights up my life and has taught me more than I ever could have imagined. I believe she will be tube free one day. I believe she will get there in her own time. I believe she will add beauty to this world that can only come from her. God created her for this moment in time. I am just grateful He saw fit to allow me the honor of being her mom.

 

THE question….why does she have a feeding tube?

In food therapy, Haven's story, Sensory Integration, Tubie life on February 6, 2012 at 9:59 pm

Today’s Awareness Week Topic: Why do you/does your child have the feeding tube they have now? Today, we highlight the medical conditions that can require tube feeding.

Oh my, what a question!  Haven does not eat orally.  Period.  Why???  Well that’s the question of our lives.  She has been diagnosed with Oral Motor Sensory Disorder and  Sensory Processing Disorder.  The oral one basically means that she has a sensory over sensitivity in her mouth to the feeling and the tastes of food.  She is afraid of food being in her mouth.  She is afraid of the thought of having food in her mouth.  She will gag just talking about trying foods or even talking about the feeling or or consistency of different foods.  She is very fearful and defensive when it comes to food.

The next question I hear is, well what does she eat?  Yeah, I just said she doesn’t eat.  Period.  And I actually mean that.  The only things she intakes orally are water (pure water from the tap that she sees you get) and she will lick salt off stick pretzels (but only one side because she doesn’t want to hold the wet/licked side to get the rest of the salt).  SO, if you could water and salt as food, then she eats like crazy : )  She does not eat food orally.  We work no stop to try to get her to eat, but we have seen very little results.

The very best guess of doctors is that when she was sick for those nearly 3 months and threw up constantly, that her esophagus was injured at the time and the pain became a referred pain and fear that she still has today.  She has not physical limitations to eating.  She has had an upper GI that showed all internal parts work as they should.

She receives all her food through her feeding tube.  Haven receives 5 feeds a day of 170ml of Pediasure 1.5.  This formula is calorie rich and contains “all the nutrients she needs”.  I added quotes because it is so hard for me to see my daughter living off fake milk in a can.  She has had nothing other than that for almost 2 years now.  I know it meets the standards of what Nutritionists say she needs, but it just seems so processed and unnatural to me.  We are working on switching to a blenderized diet…but that’s another post in itself.

Haven was unable to continue to nurse because I could not meet her nutrition needs as her soul source of food at 22 months old.  So, with no other options, she received a g-tube feeding tube.  This came after nearly a year in feeding therapy trying to teach her how to eat orally without success.  Her first therapist actually told us she didn’t feel like she was able to help Haven any longer because she didn’t know what else to do to help her.  We continued therapy after she received her feeding tube.  We even went to therapy 3 times a week for a while, 2 times a week the majority of the time….but she made little to no progress in the grand scheme of things.

So basically, that is why Haven has a feeding tube.  She does not eat orally due to a sensory fear she has that overwhelms her ability to eat.  Once people get that, they ask how long she will have a feeding tube.  Oh how I wish I knew the answer to that one.  Initially the doctors and therapists guessed she would be 4 or 5 but now they estimate she will be 10 or 12.  No one knows.  She will be able to have the feeding tube removed once she is able to eat enough food orally to sustain a healthy weight.  She will have to maintain a healthy weight and not use the tube for at least 6 months before the surgeon will remove it.  They also like for a child to go through one major sickness (a really bad cold or stomach bug) before removing the tube just to make sure they do not regress when faced with medical adversity.

We are not ashamed our daughter has a feeding tube.  We don’t need any pity.  It is her life support system.  We would do anything for our daughter and this is just what she needs right now.  We are grateful to live where this life saving devise is available.  We are grateful for the health her feeding tube and canned fake milk have brought to her.  She is thriving and is the greatest blessing!!

This is a link to the Feeding Tube Awareness video showing so many families who also rely on this little devise to sustain and give life to a family member.
http://www.facebook.com/video/video.php?v=500889450834

2nd annual Feeding Tube Awareness Week

In Haven's story, Tubie life on February 5, 2012 at 11:07 pm

It’s that time again; time for a fun filled week of TUBIE LOVE!  Of course this whole blog is about my little tubie, so you’ve already met Haven.  But here she is today, Super Bowl Sunday….ready for the game in her own special way.

There's a pink team playing today right?

Haven is 3 1/2 years old now and weighs 33 lbs.  She received her feeding tube almost 2 years ago when she was 22 months old and 18 lbs.  Haven was diagnosed failure to thrive and was nearly 10% below the growth chart for weight.  Haven does not have a diagnosis for why she will not eat.  Many of you know her story, but this week we will explore different parts of it.

Today’s question posed by the Feeding Tube Awareness group (http://www.facebook.com/FeedingTubeAwareness?ref=ts) I am a part of is:  Why awareness is important to my family? What would be difference for me/my child if tube feeding was better understood?

Awareness would help our family by providing more support for us.  I honestly don’t know what it will take though.  We still have family members and friends that do not understand and do not feel we have made the right decision for our daughter.  I suppose the awareness needs to focus on the diverse reasons a feeding tube can be needed.

To have people insinuate or even say that you did not try hard enough is beyond insulting and painful.  I think the majority of people we have come in contact with think Haven’s feeding issues stem from poor parenting.  The older generation seems to think we babied her and let her make the rules.  They think we should have forced her to eat.  We did nothing short of that.  Haven never accepted a bottle, she was 100% breast fed.  Maybe the non-acceptance of the bottle was my fault.  I had read SO much about “nipple confusion” in preparation for breast feeding.  It say you should wait as long as possible before introducing a bottle so the baby would accept the breast.  I waited.  Haven was about 3 months when we offered her a bottle but all attempts were unsuccessful.  I learned much later that you can wait too long and a baby will not want to accept a bottle nipple.  That would have been good to know.

SO, she didn’t take a bottle.  Does that mean I broke her???  Lets think for just a second about the THOUSANDS of years when there were NO bottles and babies were 100% breast fed.  Lets consider how many of those same children went on to eat orally without issue.  Yeah….I am inclined to think that nursing was not the cause of her food refusal.  Though, I have had it said to me, “Don’t you think it is your fault since you breast fed her?”  Those words actually came out of someones mouth.  Yes they did.  Of course it was my fault, I nursed her wrong.  Oh wait, is that possible????  No.

At 51/2 months old, we started Haven on rice cereal and baby food.  She was just like every other child, she ate.

Messy & Happy!

Maybe squash and rice cereal? That was her fav.

Despite all the food ON her, she got plenty down.  She was completely typical.  She liked everything we offered except baby food bananas and peas.  She ate squash, peaches, applesauce, pears, carrots, green beans, prunes, sweet potatoes, that’s about all I can think of at the moment.  She just ate.

She ate for about 2 1/2 months.  After that she got sick back to back to back in the church nursery.  She had 2 double ear infections and RSV.  She was sick for nearly 3 months.  She threw up and threw up and threw up.  She didn’t want to eat during that time of course, so I kept nursing her.  I would offer food but she didn’t feel well and that was understandable.  Once she was better, she simply never ate again.  WELL, that’s only partially true.   She did randomly eat 2 times after that.  Months and months apart and with no rhyme or reason, she ate rice cereal and baby food on two separate occasions with NO problem.  She ate it like she had never stopped eating in the first place, but she would not repeat it.

I of course told her pediatrician but he said it was fine, she was getting everything she needed by nursing and assured me she would eat again.  I expressed my concern 3 times by her 1 year appointment and he simply kept saying she would eat, keep offering food and she will eat.  Obviously, she didn’t. And long, long, long story semi shortened, at 22 months old I was still nursing her exclusively.  A newborn eats about every 2 to 3 hours….we had kept that schedule for almost two years.  But as she grew and was mobile and SO active, she began to eat more frequently.  At 22 months when she got her feeding tube, she was eating at least every hour and many times every 45 minutes.  She could not get enough food and that was evident in her weight.  At 22 months to prevent her from falling further off the growth chart, to prevent her from health complications because of her low weight and undernourishment, and because all options had been tried, we gave our daughter to a surgeon to place a G-tube directly into her stomach so she could receive the food she needed.

It really was not a choice.  Ask any parent, is it a choice you make to feed your child?  No-you feed your child.  You don’t think about it.  You don’t consider it. You feed you child!  Period.  We had to feed our child.  We tried everything you can think of and probably 100 more things.  We know we made the right decision for our daughter.  She is now healthy and thriving.  But don’t you think we feel alone?  Our child has a feeding tube.  SO many things are different for us.  Support from our friends and family is paramount in this journey. Understanding and belief that we made this hard choice out of the necessity of life for our daughter is what we need from everyone.  She is still tube fed to sustain her life.  We will be on this journey until Haven is able to eat enough orally to sustain her life and a healthy weight.

I’ll try to focus another day on the things we have tried and continue to try to help her learn to eat.  I hope you will ask questions if you have any.  Because the more you know, the more support I can see in your eyes.  Happy Feeding Tube Awareness Week!!
The Feeding Tube Awareness website can be found here:
http://www.feedingtubeawareness.org/

I ❤ a tubie : )