First of all, I hesitate to even do this blog because I don’t want people to think I’m complaining. Yes Kanyon’s eating troubles have been terribly frustrating, difficult, hopeless, and incredibly stressful. There have been lots of tears shed as we’ve dealt with this and I’ve been tested and pushed in ways I can’t even explain. BUT I will be the first one to say that there are LOTS of other people out there who have it worse than us and who read about Kanyon and think we are lucky. SOOO, I don’t want to be griping and complaining when I know that we have it pretty good. People have kept up with us through all of this and have been so good to ask us how it is going. Instead of giving them the long answer I just say, “Good” or “Better!” or “Its ugly, but we’re getting it in” something like that….but there is so much more to it. SOOO, if you promise to believe that and know that I am not complaining or asking for sympathy, then you may read on as you keep all of that in mind.
Promise?........................... Cross your heart?.............................. Ok…then you can continue.
I never in a million years would’ve dreamed that feeding my son would be this hard. I mean come on, its eating?? Doesn’t everyone want to eat. As we’ve been through this, I’ve learned more and more that there are lots of kids that, for different reasons, have a hard time eating. OI think most parents would say that their kid has been through a phase of eating/not eating/being picky that was frustrating. Even if it is just a phase, it is enough to drive you crazy. The kids I'm talking about (and raising) aren't in a phase...there is something going on that is keeping them from eating. And as a parent, it is the most out of control, frustrated, desperate feeling in the world. It isn’t something you can quit! Believe me, If I could have- I would have quit a LONG time ago! There is at least one person reading this blog that I KNOW knows how I feel, and there may be others. But the truth is, 99% of people haven’t been exposed to this world of non-eating, battles, aversions, refusals, and insanity!
They started feeding Kanyon in the NICU when he was 34 weeks gestation. That is when babies would develop the suck-swallow-breath in the womb. It goes without saying that Kanyon did not “learn” that in the womb so it was harder to learn outside it. It took him a while to learn to eat and even when we came home it was tricky and inconsistent and I never felt super comfortable. It would take us an hour to get 2 ounces down him (plus I was still trying to TRY to nurse him before I gave him a bottle). We knew that being so premature and having so much done to him in the NICU that it was likely that he would have an oral aversion. Basically, not liking things to be in or near his mouth. I think if I had been intubated as many times as he was, poked, prodded, and “beat up” like he was I wouldn’t want anything near ANY part of me. The mouth is a very sensitive and vital part to the way kids (that’s why the put everything in their mouth) and especially newborns learn, find comfort, and “gather” themselves. So all of the trauma done to their mouth when in the NICU can take its tole on their feelings towards things being in their mouth. SOOOO we thought that is what we were dealing with and that it would get better. We would feed him for however long it took us and then hold him up for about 30 minutes to make sure he didn’t throw it up.
Kanyon had been on reflux meds in the hospital, but had come off of them right before we came home because he wasn’t spitting up that much. So we thought the reflux was gone and not causing a problem. I’m afraid that came back to haunt us (and is still haunting us today). So, here we are feeding this newly home little boy 60 cc (2 oz) every three hours around the clock. I was pumping so all in all it was about an hour and a half long deal. I remember hurrying back to bed to get my whopping 1 hour and 15 min. before I had to get up again to get ready to pump and feed him again. SHEESH! That makes me tired now and I really dealt with it fine at the time. Of course my wonderful husband works hard so that I could stay home and nap a little when I could! On a side note, I remember when the Dr. told us we could go 4 hours at night and I thought I was in heaven….2 hours at a time to sleep!!! WOW!! I was weird and distorted as I’m sure many of you mothers of newborns out there are too. So, that was it and really at the beginning we just went with it thinking it was bound to get better.
I wrote down every cc that went in him to make sure he was getting enough. A regular newborn is pretty sleepy for the first couple of weeks and then starts to stay awake more and be more active. Kanyon just had 100 days of being sleepy and calm and began to wake up a few weeks after he came home. He would fight his bottles a little more, but still we just went with it. So time went on and we tried EVERY BOTTLE UNDER THE SUN thinking THAT would be the key! Thankfully, he wasn’t too picky about a nipple, he was consistent in his responses….he hated them all!! I would even call the nurses at the NICU and ask them what I was doing wrong and they would assure me that it was just a “preemie thing” and that it would get better. In defense of them, that was good advice at the time. No one could’ve known at the time that this was anything out of the ordinary.
Somewhere in there we stretched the night feedings out (so all I had to do was get up and pump) and we felt like this was OK because he was gaining appropriate weight. After about 2-3 months and 50 million different tricks and ideas, we put the nursing thing aside. It just wasn’t working. He couldn’t/wouldn’t do it and we weren’t getting any better. I was sad to give this up, but knew I had to. Though his weight gain was good and he was a happy baby, each time I talked to a nurse, therapist or Dr., I would tell them how much he hated eating and that I didn’t think he was getting enough. They all told me to just keep doing what I was doing because it was working. His weight was good. I wanted to say “THEN YOU COME DO WHAT WE’RE DOING..IT’S NOT FUN!!!!!!!!” I knew that something about this wasn’t right, but I didn’t know what to do about it. By November it was STILL taking us an hour and a half to feed him and he was only taking maybe 4-5 ounces every 3-4 hours and then spitting up/ throwing up some of that. I knew one of these days he was going to level off with his weight because he wasn’t eating any more.
His growth produced strength and his strength gave him new ways to refuse his bottles. I would trick him into opening his mouth by dangling my hair in front of him. He would open up to eat the hair and I would give him a mouth full of bottle instead of my hair. Which may seem mean, but really it is nice. He doesn’t REALLY want to eat hair, that’s gross. It didn't take him long to get my number on that one and I had to get more creative. He eventually got to where he wouldn't open his mouth for anything (he would even try to cry with it closed). He would clinch his mouth closed and turn his head to avoid the bottle all while flailing his arms! We learned that putting the bottle to the side of his mouth made it a little easier. Kory remembered his dad teaching them to do that with bottle calves, so there must be some validity to that. We tried lots of things and learned a few that made it a little more doable. You can imagine how old this got and you can imagine how thankful we were for someone else to feed him. At that time, there were 4 people that could feed him. Me, Kory, and our moms!
While this was draining, I thought it would be over soon. We started cereal at around 5-6 mo. adjusted age. He didn’t do terrible, but he never really did open his mouth. Thinking it might be the bland taste (despite mixing it with my milk) we tried baby food. He actually did better with this and I thought we were at the beginning of the end. I figured at least he would start to eat more food and need less of a bottle so we could manage it that way. In my dreams. The baby food was successful for about a month and then we went downhill from there. I didn’t fight it too much once he started refusing it because by that point he was 7 months old (adjusted) and still only taking 4 maybe 5 ounces at a time….if we were lucky. So, I quit the baby food all together knowing that I needed to make sure he was getting his nutrients through my milk. Miraculously he was still not loosing weight (not really gaining either).
(he never really did like green beans much...peaches were his fav!)
As he got older and his fighting got worse, there was a voice in my head that had always been there was now SCREAMING “Something isn’t right about this!” He was old enough now to play with toys and stuff and he didn’t mind anything being in or around his mouth. He would even let us do things to his mouth for oral motor exercises…so that started to make me think that maybe this wasn’t just a normal oral aversion. I knew that torturing my kid to feed him wasn’t how this was supposed to be. There were many many many times I was holding Kanyon in the living room and we were both crying! I just had no idea what to do. I felt alone, but knew that I wasn’t the only one who was dealing with this sort of thing. Which meant there had to be someone out there to help!
In January, we went to our Preemie Dr. in Dallas and I told him about this. He seemed to “believe me” and scheduled us for a swallow study. We wanted to make sure he was aspirating (which he showed no signs of doing, but we wanted to make sure). The swallow study showed that he was not (thankfully) but did show that he swallowed better with thicker liquid. So we started adding this powder thickener to his milk. This began a journey in itself. Even the nipples made for thicker liquids did not work for us. They would drown him out. So we tried making our own holes. That too was a disaster. Too small and he would suck for 15 minutes and never get anything and too big and he would drown and then be scared to eat any more. This was a terrible process! At the same time we were noticing that within minutes of mixing the milk with the powder it was loosing its thickness. We would start with thick and it would thin out and of course be too thin for the enlarged hole and create the drowning problem again. After about 2 months, we were sitting in the office of a nutritionist, child psychologist (don’t ask me why), and a child life specialist when the observing resident Dr. said, “Wait! Is that breastmilk you’re giving him?” She proceed to tell us that breastmilk has some chemical that “eats up” the thickening agent causing it to thin out. Well GLORY BE I’M NOT AN IDIOT! Everyone kept telling me that with time it should get thicker and I knew that wasn’t happening! So, they sent us home with the gel stuff and that worked MIRACLES!! Well, at least it stayed thick.
(Getting ready for his swallow study at Children's in Dallas) Then came the next breakthrough found by my mom. She was on the hunt to solve our bottle-thick liquid problem and it came in the form of an out of style, random product found only at Walgreen’s! It was a baby food nurser. It is made to put baby food in which apparently used to be the thing to do then all the doctors said don’t do it, so everyone stopped. Well, luckily Walgreen’s didn’t stop selling it. The nipple has an enlarged hole and it has a sliding disc to keep the food moving up. Sooo, we start using this bottle which at least ended the battle-- not to mention money pit--of trying to find/make the right bottle.
(here is the nurser...and a little shot of him eating...nice!)
At this time our main struggle was this: Do I keep fighting it and make him hate it worse or do we stop fighting him knowing he won’t get enough milk?? Time had not made anything better, in fact it was worse than ever. He had a bout in March where he actually did OK for like a week and a half, then after his surgery in mid-March he went down hill and never came back. My frustration and desperation had reached an all time high and I was at the end of my rope (that somehow I’d managed to hang on to for the last year). In one of my lowest points, my cousin Emily comes to the rescue with some helpful advice (she’s a speech therapist) and she kept me sane for several weeks. The whole feeding thing is kind of its own beast as far as therapy goes. It is a complicated and multi-leveled beast! Some Occupational Therapist do it, some Speech therapist, but it is pretty much its own thing so it requires lots of training and experience. Emily is one who does this, so she was SOO helpful! BUT she was in Alaska so we could only email!
We were to the point where he would open his mouth ONCE. So that meant I had to decide “do I give him medicine or milk?” because he opened his mouth that one time and whatever he took that first time was all we could get. Sometimes that might be 2 ounces, others it might be half an ounce and he would stop. So, you can imagine how nerve racking it was when I would finally get the bottle in and just sit there holding it hoping that nothing made him take it out. During that time, we came across Our Children’s House at Baylor thanks to a blog reader that I didn’t even know. Right after I contacted OCH, we had Kanyon’s 1 year appointment. That is when Dr. Chris showed major concern for his lack of weight gain and mentioned the possibility of having to do a G-tube. I was not ready to do that, but realized OCH was my last hope. At this appointment, he also changed his reflux meds (which we had started back on for about a month). Dr. Chris didn’t know much about OCH, but agreed to write the script and let me give it a shot. The people there were so great to rush us in because we were “G-tube prevention” and didn’t have much time. As soon as I knew we were going there, I felt some of the pressure let go and just made sure he stayed hydrated until we could get there. When we got there Kanyon was drinking about 16 ounces A DAY! Yes total! That is about what a newborn drinks. AND the only way I could get him to open his mouth was if he was asleep. So the 16 ounces that he did get were when he was asleep. During all of this stress with his eating amounts, we were dealing with the fact that just the smallest catch in his throat or funky swallow would cause him to throw up. When I say throw up I don’t mean a cute little spit up that you catch with your burp rag. I mean projectile everything!!! So half of what he did eat would end up on the floor. FRUSTRATION! Ok, so that is the deal with throw up.
We started at OCH as Day Patients, but that was just to get our foot in the door and as soon as a room opened up we moved inpatient so that things could really get going. The speech therapist came to talk to me and I kind of told her his issues. She went to feed him as an “evaluation”. She wasn’t going to keep him, she was doing the evaluation for another girl. After spending about 15 minutes with him, she came back and said, “Forget it. I can’t explain this to anyone else. I’m keeping him!” And we were so glad. That day Patti the ST became our life line! His eating issues aren’t the typical oral aversion, and he’s not really a “sensory kid”. Meaning it’s not the texture, lighting, noise, or any other sensory factors. So he’s kind of a tricky case that doesn't really follow one rule. She didn’t seem concerned that it was hurting him because once you get the bottle in his mouth he doesn’t freak out. He just tries to jerk it out but he doesn’t cry and act like it hurts. SOOOO thus began our OCH adventure. They immediately put us on a feeding schedule every 4 hours and explained that he will be almost impossible to demand feed because he doesn’t really understand what it means to be hungry. That whole feeling and cause and effect thing hasn’t, doesn’t, and may not ever click with him. You probably read about it while we were there, but between the NG tube providing enough liquid and us realizing how to handle him, we got better and better each day. We came home with the NG tube, but more importantly, HOPE. We spent a little time with the NG tube and got rid of it for good about a month and a half ago!
(tapey face NG tube boy!)
(the glorious night he threw up the tube and I THREW THAT THING IN THE TRASH! GOODBYE!!!)NOW…..Kanyon how takes all meds by mouth mixed with a little milk. He also meets and often exceeds his goal of 800 ml. per day!! His weight gain has been monitored very closely and it has been excellent. 14 grams a day to be exact! We are also on Pediasure now. (we did that while at OCH). Though I still had lots of frozen milk left for him, we needed to switch. Pediasure has 10 more calories per ounce than breastmilk and gives him the extra nutrients that, at this age, he would normally be getting from food. Because of the higher calorie count, he can drink less volume and still meet his calorie needs. So, I was sad to stop the breastmilk because I wanted him to have it until July (his adjusted 1 year age), and we were a month short of that goal. We still add hydra-aid (Simply Thick off brand) gel thickener to his Pediasure (I still call it milk sometimes, so don’t get confused) but as he takes more and more we don’t add any more gel, so we are gradually weaning off of that stuff too. Not sure how that will go since we’ll have to switch bottles. One thing I’ve learned is that even the smallest changes have a major affect on little ones like Kanyon and we have to take it slow. So the whole changing bottle thing may be a major ordeal. Oh well.
OK, so here we are today and this is what it is like feeding Kanyon:
We offer him 180 ml (6 ounces) of thickened pediasure every bottle. That is more than he needs, but some bottles he doesn’t finish, so it all evens out.
We stayed on the same schedule that we started at OCH: 7am, 11am, 3pm, 7pm, 11pm
We have a time limit on his feedings-30 minutes. This was part of the plan at OCH. We aren’t supposed to let feedings last any longer than that. Most of the time we can do it and at least get his minimum. Then we have to hold him up for 30 min. trying to keep the throwing up to a minimum. We have actually started shortening that to 20 minutes and we’ve done fine. It is much harder these days to keep him still after he eats, but we’re pretty successful.
While at OCH the GI specialist prescribed him 3 reflux meds which we are still on, but “outgrowing” the doses if that makes sense.
I have to start his morning feeding at about 6:40 because he is ASLEEP and it takes him longer. This has always been our hardest feeding and still is. Other than that we stick to the schedule. It works because he’s not ready to go to sleep until 11 or 12 anyways. So, if you are our friends and you’ve tried to make plans with us that is why we have to work around certain times. So many times people have said, “Ahh, he’ll eat when he’s hungry!” but that is not the case. There is no telling how long he would go without eating if we didn’t make him. I also know that people are probably annoyed with us having to be strict on his schedule but it is the only way we can do things right now. Once we start feeding him we are stuck wherever we are for at least an hour. That makes it hard for us to do a lot of things without planning ahead. I’ve always been an annoying mixture of organized and scatterbrained, so this schedule has good and bad points to it, but the most important thing is that it is working for us!
I’m not going to pretend like eating time is a wonderful bonding time for us in our family. It is still pretty much serious business, but it is better. I start out sitting down with Kanyon in my lap and offering the bottle that way. He will take it, but not for long. The great thing is he will open his mouth more than once now! I am trying to work on getting him to tolerate me sitting longer. Why? you ask…because he’s nearing the 20lb mark (if he’s not already there!) and I get TIRED!!! Some days are better than others. He has recently decided to start fake gagging when I touch the bottle to his lips when sitting down. That’s nice. Especially when he makes himself throw up. He does good at first and will sometimes take the first maybe 2 ounces in like 5 minutes with little fighting. THEN WE START THE BATTLE for the rest of our 30-40 minutes! Once the sitting bliss is over, I stand up and assume the position. I hold him in a semi sitting, layed back, but the key is the constraint! I have to pin his right arm down so that he can’t reach up and pull the bottle out or block the bottle from getting to his mouth. I then proceed to walk, sway, and bounce while he eats (hopefully). He yanks his head to the side to get the bottle out a million times and I have to sometimes hold his head so he can’t do that and sort of force him to open his mouth, but at least he is moderately cooperative. He squirms and pulls and tries to get out of it with all his might. It is the wrestling, squirming, whining (from both of us) that causes me to say “its ugly” but at least I can get it in him. He is starting to tolerate more feeding with more peace.
One of the things that we are dealing with now is that I’m just about the only one who can feed him. Some of that is knowing how much to hold him and fight him and when to stop and give him a break, but the biggest thing to feeding him now is positioning. With his size and strength and tricky agility, he requires a professional touch. Thanks to 8 weeks in Dallas alone with him, I’m the professional. Kory is so patient and helps so much when he’s home but he’s having to re-learn a lot of this too. He will often start a feeding and then I have to come in as “the closer”. Kory will call for me “Joe Nathan! I need you!” FYI Joe Nathan is a closer for the Minnesota Twins. Feeding Kanyon still goes to the one who draws the “short straw”, but it isn’t as bad as it used to be and the stress in our lives is SOOOOO much less. I am thankful for Kory when he feeds him to give me a break. I’m sure our moms will learn again too and then we’ll have a little more freedom. Until then, I’ll be pacing our living room sweating holding a giant kid begging him to eat!
We are still on the reflux meds and feel like that is getting better. We always knew he would outgrow it, but he wasn’t GROWING!! Now that he is growing and getting stronger, he’s a little better. He still throws up A LOT when he does, but he doesn’t do it as often. He seems to be able to recover from a funky swallow or a cough or something like that that 3 months ago would’ve caused a for sure shower of milk! We can usually hear it coming so we can turn him and get out of the way of things we don’t want it to hit. We are glad we have wood floors and tile…easy to clean up! And you'll notice in pictures that our Lazy Boy still has towells covering it!
Now, those of you that are around us a lot may not have even seen some of this stuff. If we are in public or at other peoples houses where there is a lot going on, we try not to push it too much. Throwing up seems to be Kanyon’s response to over stimulation and craziness, so we just get a minimum and stop. We try to keep it as “pretty” as possible if we’re not at home! I still measure every cc that goes in and keep track of it each day to make sure we’re getting our total. It is also helpful to see patterns, etc. Every aspect of my life still revolves round feeding Kanyon and I look forward to the day that that can settle down some.
Of course a normal 18 month old or even a 14 month old (his adjusted age) would be eating baby food and even table food. We’re obviously not there, but starting next week we will be going back to Dallas weekly for his speech therapist to start working on spoon feeding. Maybe we can get somewhere with it. I’m expecting it to be a ridiculously long process, but hoping it doesn’t mess up what we’ve got going. We’ll see.
Why all the fighting and refusals? Well, we of course don’t know exactly why, but the “experts” think it has a lot to do with his early eating experience (being rough and difficult) and his reflux. Though he wasn’t always spitting up super often, it could’ve still been happening and it was burning his throat and causing discomfort in his stomach. So he learned pretty quickly and intensely that food=pain! So we are hoping that the reflux meds have taken the pain out of eating and that he will gradually un-do what he thinks of eating and re-learn to have a more positive response. If he could eat cinnamon rolls, I think that would take care of it!!
In the mean time. I feel like we have come so far, but I am still amazingly jealous when I watch other people feed their kids. I wish it were that easy for all of us. At the same time, I feel like I’ve caught breaks where others haven’t. In the midst of the most stressful days, my baby boy was still happy and easy going. When I needed to rest my brain before I exploded, he was content to bounce in his bouncy seat until I regathered myself. At the peak of our eating horror, I was stretched in a way I’d never felt before. It would be an understatement to say that it has often brought out the worst in me. I was all alone and had no clue what was going on and there was no one to help me and there was no way out.
Kids like Kanyon don’t follow the rules. They don’t follow the rules on eating, so the “normal” stuff doesn’t apply to him as far as eating when he’s hungry and waking up when he’s hungry, etc. It just doesn’t work that way for us. Like I said, I am not the only person to ever go through this and I know we haven’t had the worst experience! I just know that a lot of people have asked about his eating so this is for them.
We are so thankful for OCH and the way they helped us and brought some peace to our lives. We are praying that his eating struggle will pass one day, but realize it may not. We’ve been told that from what they see, Kanyon’s eating issues could be pretty long term. While I’d love for someone to tell me that he’ll be over it in 6 months and we’ll never look back, at least I know what they think and we can settle in and prepare for it. So...there you have it. The craziness that is feeding my child.
FYI Kory just fed him a complete bottle and he did great! YEAH!
(A happy milky Kanyon wearing a new 6-9 month onesie!)