Feeding Tube Awareness Week

It's Feeding Tube Awareness Week, so I thought I should add my two cents...

I grew up in the world of breastfeeding. And in that world, extended breastfeeding is what you do and you don't care what other people think when you put your baby to breast in every establishment you've ever been in. It's just, right. It's the most natural way to grow your baby, and eventually, toddler. It's a sacrifice that you make as a mother, to not use bottles, to never be away from your baby for more than an hour or two (you're probably lucky if you can get away with two hours). With Isabella, I could never imagine it any other way, that's what I wanted--attachment with my baby. And I was so upset when she started (happily) eating solids. 

Things were different with Isaac. When I was pregnant with him I just wanted him out. And when he was breastfeeding, I just wanted him to wean. He has a very high, narrow palette, which was part of the reason why I didn't enjoy breastfeeding him. And he was always angry and would never nurse for comfort. I felt like I was lifting up my shirt a million times a day and still couldn't make my baby happy. Anyway, he weaned in July, right after his second surgery. I didn't try to get him to continue. Instead, I continued force-feeding him with that dumb squeeze bear, hanging on for dear life until he would have his feeding tube placed. And then, right before his PEG placement, I felt really guilty that he wasn't nursing. But it's fine, I'm over it, and I know that in reality, breastfeeding wasn't working for either one of us. When he was in the hospital though, they used that word: formula. And it was like a slap in the face every single time. They'd say it, and I'd look over at Sarah, or most of the time try not to look at Sarah or my mom, because I couldn't believe I was in this situation, and it felt like my ultimate failure as a mother. Here I was, this extreme breastfeeding advocate, giving my baby formula, through a tube no less. But Sarah reminded me, this is what it is for--these extreme situations and we should be thankful that we have it available. (By the way, if you chose not to breastfeed your baby, please don't be offended. Each mother makes a choice, and sometimes your choice is governed by medications you are on, surgeries you've had in the past, postpartum depression, sexual assault that makes it hard for you to have physical contact such as breastfeeding, or a host of other things. It's a personal choice, and you have to do what is best for you and your family. That's why I gladly weaned Isaac when he was only fourteen months. It wasn't working for us.) 

It's been almost a year since the word, "feeding tube" was suggested for Isaac. We had our first appointment at the Feeding Clinic and couldn't believe they were actually suggesting our son would need a feeding tube. Walter holed up in his shell of anger and I went into my usual "research mode". Looking back, all of that stress over the feeding tube itself, was so unnecessary.

The goal was to do everything possible to avoid Isaac's need for the feeding tube. I can safely say, I did everything possible. I essentially kept my child alive during those horrible months of trying to nurse him and also spent most of my day squeezing milk into his mouth through a straw and distracting him with tv so that he would swallow. I was blamed for his failure to thrive. I was told that I wasn't nursing him enough, or long enough. I was told that something was wrong with my milk. Thankfully, I have a substantial knowledge base of breastfeeding, to know that all of these things were false. But to prove to various doctors that they were wrong, I went out of my way to meet with an MD who is also a Lactation Consultant. She assured me, there was more going on than was meeting the eye. Finally, someone validating what I'd been trying to get across for so many months. All of that, began the tedious journey to discovering Isaac's genetic abnormality, odd nasal passage and small airways, low muscle tone throughout his body, and so many other things I'd been arguing with doctors about. Just as a side note, after all was said and done, I did receive an official apology from Isaac's pediatrician, for not listening to me and for not being proactive in helping me figure out what was really going on with Isaac. 

Eventually, Isaac's oral aversion became worse and worse. I'd get a small amount of puree in his mouth and then he would scream until he made enough drool for the food to just fall out. On the worst day, he went forty minutes without swallowing, just so that he wouldn't swallow the puree. That's when I gave up on solids. And squeezing the milk in his mouth wasn't much better. Ultimately, we decided that he needed the feeding tube. We needed the feeding tube. My marriage needed the feeding tube. None of this was working, and no one was happy. I didn't have any time for Isabella. My entire day was consumed with counting calories, and ounces, and mixing milk, and tricking Isaac into swallowing, and praying that his weight check that week would show that he gained at least, an ounce. On his first birthday, he weighed only fourteen pounds, five ounces. And now, he's almost two, and weighs eighteen pounds, which is less than Isabella weighed when she turned one. I'm not saying weight is everything. A lot of doctors scare mothers into thinking their baby isn't gaining fast enough, when in reality, what you really need to be concerned about is the weight to height ratio. If they are somewhere, anywhere, on the mysterious "chart" for their weight to height ratio, chances are, they're just fine. Bottom line, think for yourself and your child. Don't believe everything everyone else says. Get a second opinion. Evaluate family history. The first GI doctor we met with, sent me home with a piece of paper stating that I should give Isaac two, eight ounce bottles of formula a day. Um, that's really helpful. Thank you. Obviously we have a communication barrier BECAUSE I JUST SAID HE HAS A SEVERE ORAL AVERSION. Oh my. If a doctor treats you that way, cross them off of your list. If your child has multiple issues going on, trust me, you don't have time to deal with dumb people. 

Anyway, I thought of the feeding tube as a failure. And I definitely thought of giving him formula, a major sign of failure. But I had to let go of that, because his successful development was my greatest concern. Getting the feeding tube was really scary. We'd been through much worse surgeries with him, but for some reason, I couldn't wrap my head around the fact that he would come home with a foreign object sticking out of his stomach. When all was said and done, it wasn't so bad, and I quickly got the hang of the whole thing. In all honesty, using the tube is quite easy, and I feel blessed that since having the feeding tube, life has been fairly uneventful. Sure, we've had our mishaps where the medicine port pops open and a whole feeding, along with stomach contents end up in the bouncy seat. That's not fun. And at first I was self conscious about feeding him when we were out, but now I don't care. I actually invite questions and curiosity. I had no idea what a feeding tube was, until we had Isaac. I think this is a world that most people just don't know about. I still have to keep track of calories and ounces, but his feeding is consistent and I know that what is going in, is actually going in. And when I caught Walter mixing his milk with too much water, I freaked out, "What are you doing?! You have to pay attention to the measurements because it matters how many calories he gets!" 

What do we put through the tube? 

Organic Pedia Smart. This is delivered each month by the medical supply company, and is covered by insurance. About three times each week, he has Miralax mixed in with one feeding per day. If that isn't getting the poop going, he gets Miralax mixed with one ounce of water. I've found this is the best balance for maintaining solid poop, but not too solid, and not diarrhea. 

How many times each day does he have a tube feeding?

I strongly believe in nursing on demand. So I follow a similar approach to Isaac's tube feeding. Isaac is good at "telling" me when he's hungry. But we roughly follow an every three hours, feeding schedule.

What is the most challenging part of Isaac having the feeding tube?
I think Walter and I would both agree that making the decision to get the tube, was the hardest part. You never really think of a child not liking to eat, so it's all very contradictory to the norm. Pre-planning the amount of milk to take with us if we're going to be out for the day, and also the thought of, "what if something happens to the pump?" is all a bit stressful. The pump is the only way for my child to get food, so if something happens to that, we're screwed.

How has your family handled the feeding tube?
For the most part, everyone does really well with it. Anyone who is going to care for Isaac, has to know how to use the pump and hook him up for a feeding. Some people are more hesitant to learn and perform the whole process, but I assure you, it's easy enough for Isabella to do it and certainly doesn't take a genius. I have a couple college girls who watch the kids every once in a while and they are very comfortable with it.

What does Isabella think of the whole thing?
We're really honest with Isabella about everything regarding Isaac. She knows that he has a hard time eating, walking, talking, and other things that kids his age don't have trouble with. She often tells me that Isaac is a baby, and I have to remind her that he's not really a baby, he just looks and acts a lot younger than the other kids around his age in our group of friends. Before he had the tube placed, I showed her pictures of what it would look like and we talked extensively about how this would help Isaac grow. She did tell me that she's glad she's not a boy, so that she doesn't have a giant tube in her belly. Isaac's GI doctor got a kick out of that one. I assured her, not all boys have tubes in their bellies. 


What is the best part of Isaac having the feeding tube?
There are many good things about Isaac having the tube. He is getting bigger and stronger, he pulls to stand, cruises along furniture, learned to crawl, learned to roll over, and at times, sits up straighter. He has more energy during the day, and in general, is in a better mood. Does he sleep better? Sadly, no. But we've also learned that this is more due to the severe obstructive sleep apnea than potential hunger...which is what I spent months trying to convince the doctors of.

Can he take a bath? Go in a swimming pool?
Yes.

Does he eat any food by mouth?
No. But we're working on it. Obviously, we would like him to eat by mouth, eventually. Any medicine he takes also goes through the tube and then is flushed with water.

What kind of comments do you get from the "peanut gallery"?
The most annoying comment is, "you just need to find what he really likes to eat." Oh really? That ice cream you're eating right now, go ahead, try to give him some, see what happens, and you get to deal with the consequences. Same for you, with the chocolate frosting. You can walk him around and soothe him after you traumatize him with that evil chocolate.

I hope this helps explain tube feeding and the process parents experience when deciding to have a tube placed. I'm an open book, so if you think of a question that I haven't addressed, let me know!

Thanks for reading,
Sierra