Asher got his g-tube when he was 2 months corrected (6 actual). He came home front he NICU with an NG tube (tube that goes in the nose down to belly) to help with his bottles he didn't finish. We fully expected his eating to pick up after being in the more comfortable environment of home. It didn't. He had reflux, and the discomfort of a tube down his throat. And he was trying to learn to eat. Not ideal. So, 1 1/2 months after coming home, he was back in the hospital getting prepared for g-button surgery (a feeding tube). It was one of the hardest procedures to watch him go through because now he really was our baby. Bryan and I were 100% in charge of him for the first time in his life. And so, it was different than any procedure in the NICU. All I could think about was how he should be playing at home, living an easy baby life. I just wanted to hold him in the way I knew would comfort him but I couldn't because of the tubes, iv, and wires. It was awful to see him crying in pain, and hooked up to way too many things laying and in a hospital bed- again. But, we got over that awful weekend, and eventually got used to his g-button and began to be very thankful for it.
After g-button surgery
He was 100% fed by the g-button for about the next 9 months. He fluctuated during that time with what he ate by mouth but it was never really enough to count. At about 12 months corrected (16 actual), we tried something new and he started eating more and more purees. Over a month he increased his intake so that he didn't need formula any more! It was amazing to see! So, since then, (he's currently 20 months corrected, 2 years actual) he's been consistently eating enough puree by mouth and getting just whole milk and water through his tube. He's never been crazy about drinking. At the same time, he's experimented with table food just about every day. But he's not consistent with it. At one point, he was getting half of his calories from table food! But then he got a cold, and so there went that. Extra mucous in the throat just doesn't go with sensitive gag reflexes and feeding issues.
Eating the table, not food. Non food items are always more appealing! (About 9mo corrected here.) He was only eating a few bites a day by mouth-maybe.
Getting some milk on a walk (about 14mo corrected here). We would often finish the milk part of the meal on a walk when the weather was nice. This helped him to digest and would help avoid a throw up. If we let him get up and run around right after eating, it often ended in him throwing up the entire meal.
Life with feeding issues is a BIG roller coaster. I know I've said that before. Except on this roller coaster there is no track where you can see what curve, drop, or hill is coming next. It's a blind roller coaster, completely unpredictable. There is no chance to close your eyes as the stomach-churning downhill drop approaches. This has been our life the last 15 1/2 months. Really high high's and really low low's. It can be exhausting! Currently, Asher is fighting the "system" he has accepted so well for 8 months. He is no longer fully cooperating with eating purees. It takes a lot of work to get those bites in, and we haven't been able to get it all in. He's also not willing to try many table foods to take the place of the calories of the puree. So, this is a challenging time. We are working on a plan. We like that he is asserting himself, and his opinion about eating purees (I wouldn't like it either), but he has to also figure out how much to eat to take their place and sustain himself so he can keep growing and thriving. That's our ultimate goal! That he would understand how to be in charge of his hunger. For now, we are taking each day, one feeding at a time, praying a lot, getting messy with him exploring food and hoping for the best. And in the end, we can always give him more in his tube if he needs it. We can actually put thin purees through the tube if we need to, which is a blessing. But it is also hard to do. Because it feels like a big step back if we go from him eating all of that by mouth to put some of it in his tube. That was one of his BIGGEST accomplishments in feeding to go from eating about 4oz a day of puree to almost 20oz in one month! We also wonder if it is time to not "make up" those calories he won't eat by giving him more through the tube. We wonder if it's time to see if our little birdie can fly on his own. Oh how we yearn to see that. God knows the timing. We wait and we hope. And it could all change by tomorrow or next week. The roller coaster. It doesn't stay in the same place very long.
This is after eating some table food and feeding himself pudding! Yum! Little victories.
We use a "reward" system for puree bites. So we offer a toy, or anything interesting, and he knows he has to take a bite to get that. It's not the perfect, ideal way of eating. But it gets the calories in, and in by mouth. And for table food, he is totally in charge of what he eats and we don't use the system for that. We just do that for puree because it has his main nutrition in it. It's often a mixture of grains, fruits, vegetables, sometimes meat, and we add oil to it so it has some good fat in it as well. The hope is that eventually, he will be totally in charge of his intake and not need a "reward".
This is how we use the tube in a meal, for giving him whole milk. The syringe is resting on the foot rest of the chair. We just slowly push it in over the course of the meal. Isn't he sweet? He hadn't realized yet that his seat belt was off, or that would have been a blurry picture of a toddler making a run for it!
PS. That milk has a vitamin mixed in with it--that is why it doesn't' look white!
Close-up…the monkey behind the button is just a pad used to absorb any leakage when unplugging the tube. Constant wetness on that area would result in irritated skin and possible granulation tissue which is really no fun. These pads have worked well for us! Sometimes people ask if the tube hurts him. It does not. It's just a normal part of his body now. It can get bumped, moved, tugged on and it won't hurt or come out. He has never really seemed to care that much about it.
So, here is my friend I mentioned. This is one of my best friends actually. A throw-up cup. Throw up is usually a part of a tubie's life.
There is a cup always near by in our house. I keep some in the car. I keep one in my diaper bag for appointments and especially for when we go out to eat. I even invested in these nifty collapsible ones for outings so it wasn't so bulky in my bag. That's how important it is! With many tubies (tube fed kids), throwing up is common. Not all have this issue, but many do. From talking to moms and doctors the consensus for why seems to be that it's just part of being tube fed, and not fully choosing when you want to eat/drink. And also part of having a sensitive gag reflex…we can just thank extreme prematurity for that one. So, Asher will often throw up what he's eaten by mouth, just because he gagged on some food, or even on a bite of puree or because he has the hiccups. We deal with throw up sometimes once a week. Sometimes it's several times a week, and on bad days, 2 times a day or more. We have become experts at knowing when he's about to throw up, and we can grab a cup and have it at his mouth with cat-like speed! That saves us both from dealing with a big mess. We have picked him up out of bed several times after he's thrown up and is covered in it. It is, hands down, my least favorite part of dealing with a g-button and feeding issues. And that's not because it's gross. Although it surely is. It's because it means my child is having yet another bad experience with food to add to his foundation of not trusting food to be an enjoyable thing. And it means my child has lost precious, needed calories that we worked so hard to get in him.
But, despite the thousands of times he's thrown up, he keeps growing. He's about 24 1/2 lbs and the same size as many of his full term friends. And that's a blessing straight from the Lord! We are so thankful for weight gain! And we have his feeding tube (g-button) to thank for laying the foundation for that those first 9 months. And that's probably the most important thing to understand about tube fed kids. That tube is allowing them to grow. And that means their brain is growing, so they can learn and thrive and meet milestones like their peers.
One of the hardest things about feeding issues and having a tube fed kid is relating to others who aren't going through that with their kids. I do have some feeding issue and tubie mom friends and that is a blessing to have them on the days where I know, "they just get it." I also have many friends who don't deal with this, but make a genuine effort to understand, and pray, and walk alongside us. They are an immense blessing. The hard part is talking with people outside these circles. I often struggle with knowing how much a person really wants to know when I'm asked questions. I love educating and teaching others about the tubie life. But it's also a mental and emotional investment to explain things about it. As I think it would be to explain any special needs your child has.
Here are my top 4 things I would NOT recommend asking or saying to a mother of a child with a feeding issue or feeding tube:
1. When will he/she get the feeding tube out?
This is #1 on this list for a reason! This is the golden question I would love to know the answer to myself! Most of the time the tube is not in by choice, and so it's up the the child, when they decide they want to eat/drink. Sometimes, it's a medical issue and that is up to doctors. But, often, it's a painful waiting game. To me, asking this question just piles on to the many times I've asked and hoped for that answer myself.
2. Will he/she struggle with eating his/her whole life?
Again, we hope not. We don't know. This is just not a productive, sensitive question…no matter how well meaning.
3. My kid is a picky eater too. It's just how toddlers are.
It's just not the same with tube fed kids. Kids with tubes and feeding issues may be toddlers, and that may play a role. But it just can't be compared to a child who knows how to regulate their eating/drinking on their own and who is growing at a normal, healthy rate because of it. Many tube fed kids missed out on learning how to recognize, and regulate their hunger as young babies. So, they are having to learn about that in a different, unnatural way.
4. Giving advice.
This is a very tricky area. I would say proceed with caution on this one. As in, don't go there if you can help it. It would be like me giving advice to a lion tamer. I just don't know anything about that except what I've read or seen, which is nothing like the real experience, I'm sure. (And, let's be honest, I really haven't read or seen much on that!!)
What do I recommend you say/ask to parents you know are dealing with a feeding tube or feeding issue and you are wanting to know more about it? Glad you asked!
1. How is he/she doing? (Just in general, let the parent decide to go into feeding details.)
2. What is he/she working on in therapy?
3. How is eating/drinking going this week?
4. How can I pray for you and your child?
And lastly, I will just try to be very real. I know I can be hard to approach on this topic. I know it's hard to ask questions about things you aren't familiar with. It's difficult for the asker to know what to say and for the receiver to know how to respond on sensitive topics. It's hard for me to not react too defensively sometimes or too sensitively. It's part of the momma bear thing. And also, part of the continuos process of sorting out my heart on the matter. I know I am exactly the mother God planned for Asher. I know He will give my husband and I all we need to navigate Asher's feeding issues. But, there are many days I don't want this. There are many days I long for easy and normal in this area. I really will cry the day I can take Asher out to eat and he just eats something off the menu. And I don't have to pack syringes, milk, puree, spoons and a million tiny toys to distract him. This has been a continual, refining process of the Lord teaching me about His character, and how ultimately, He is better than having a child that's easy to feed. And I am a better servant of His because of it. He has given me a different perspective because of it. I appreciate some things I never would have. And I am thankful for those things He's showed me! And I pray for grace from those around me as I navigate through the lessons God's teaching me in this area. I'm so thankful for my family and friends who give me grace constantly!
I think the most important part of asking questions about a child with a tube, or a feeding issue is to have a genuine interest and be willing to listen. Being a parent who's dealing with this issue can be a very isolating thing. A lot of times we retreat rather than engage in some conversations because we assume no one will understand or has the time to try to. And it can be a very consuming thing. Similar to caring for a newborn. Life is all about eating at that age. It still feels like that to us a lot of the time! Our life still revolves around the high's and low's of feedings. I'm sure a lot of moms with kids who have special needs feel hesitant to share. So, it will bless the momma you're talking to if you show that you have time to listen, and ultimately that you care. Because most of the time, I do want to talk about it, and I do want to explain how things are going. Moms love to talk about their kids! I think that goes for any motherhood topic! I hope to apply that in conversations I find myself in about things I am not familiar with. How to ask with care, and to listen with care.
Still with me? Thank you so much for that!! We'd LOVE prayers for Asher to LOVE eating one day. We want to throw a HUGE good-bye party to his g-button and to throwing up! We appreciate all of you who are cheering Asher on, and walking alongside us in this. Thank you. The preemie journey lasts far beyond walking out of the doors of the NICU.
Asher says thank you for your prayers too! He says "mmm" now anytime he sees food or a drink. It's pretty darn cute! I can't wait to hear that more and more as he continues to explore and enjoy food. We thank the Lord every day for this beautiful, energetic, smart and silly little boy.
