Sweet B's Eating Issues-The Saga Revealed

I often find myself explaining to people why Sweet B uses a feeding tube to eat. It is a long story, and naturally, it is very exhausting to have to tell it over and over again. So maybe I'll just print out this page and give it to anyone who asks, including her doctors, so that I don't have to tell it from the beginning. (I am joking...maybe...)

It was also a painful time in my life, so that is why it has taken so long for me to write it out.

Here goes...

Sweet B was fed through an NG (nasal-gastric) tube in her nose for her first five weeks of life. When she was born, she was simply too small and weak to use a bottle. The nipp.le was bigger than her mouth! We did start her dry breastfeeding about two weeks after she was born, so at about thirty-four weeks. I would pump, put on a nip.ple shield, and she would suck on the shield. I would pump first so that she wouldn't get any milk in her mouth and choke, which would cause her to desat (a term used for when her oxygenation goes down in a scary way). Then a few weeks later I started breastfeeding her-or rather, trying to breastfeed her. You should have seen her next to my bo.ob! Her head was seriously half the size of my bo.ob! We would still use a ni.pple shield to help her latch on. We practiced breastfeeding every day, and some days she would do it and some days she wouldn't. When she did, she never took a significant amount. (By the way, this breastfeeding is done in the middle of the NICU. They just put up a divider. Very odd, but you get used to it.) (Another by the way: I break words like ni.pple and boo.b up with periods so that some per.vert doesn't do a search and come to my site looking for something that is not there!)

About a week before her discharge from the NICU, so at about thirty-eight weeks, we began bottle-feeding her. I was so sad because an overnight nurse was the first one to give her the bottle. Fortunately I got over it rather quickly when I was told that she didn't do well with him, but when I gave her the bottle she suc.ked like a champ! She was such a good bottle feeder that the nurses knew that she would be very quick to feed, while their other patients took a long time. There is a rule in the NICU that bottle feeds are to take no longer than thirty minutes, because it tires the baby out and uses way too many calories. We only had to worry about that time limit a few times. Feeding her still caused us stress, because she was hooked up to several monitors and any time she would choke, she would desat which would cause beeping. One time she even had to get oxygen because she choked on the milk. She was already on a nasal cannula at this time, so imagine my horror as they had to give her even more oxygen as her face turned blue.

This entire time I was pumping every three to four hours, including at night at home. I was a champion milk producer, and was sure that I would bring her home to be a breastfeeder. I thought we would get rid of those pesky bottles all together. I took such pride in filling up those bottles with milk. We bought a huge freezer for home, and I began stocking up just in case she wanted to take a bottle or two when we got home.

Anyway, in order for her to be discharged, she had to learn to eat. She learned quickly, through a bottle. I brought her home, and every day I would try to breastfeed. Every Single Day. For Five Months. I went to lactation consultants and tried every single thing. She would not latch correctly. However, with her bottles, she was fine. She drank slowly, and we often went over our thirty minute time limit, but she was still fine.

My memories of our first four months at home consist of me trying to breastfeed her, bottle-feeding her, and then pumping. Every three to four hours. It was exhausting, but I was so happy. I think the prolactin that I produced with pumping made me happy, and I was just so thrilled to have my baby healthy at home. The pumping made me tired, but her doctor told me that breast milk was so important for preemies. So I kept pumping. I pumped exclusively for five months. That is a long time.

In December, I stopped trying to breastfeed. It was obvious, after five months, that it wasn't going to work. Giving up trying to breastfeed made me very sad. I had tried so hard for so long, and I so badly wanted to engage in a natural process between mother and child. I didn't have a normal pregnancy; I couldn't even see Sweet B when she was born after my c-section, and I saw her fed through her nose for five weeks, so needless to say, giving up the idea of breastfeeding was hard. But I was smart enough to know what was truly important, and that was that she was getting nutrition.

At the end of December, I decided to stop pumping. I had built up a huge milk supply in the freezer-enough milk to get her to about nine months old. The reason was that I didn't have time to enjoy Sweet B. I was always bottle feeding her or pumping, and at that point I realized that she needed her mommy to physically be with her, and that my milk would carry her to nine months, which really is amazing for a baby who doesn't breastfeed. I realized that having a close relationship with my daughter was more important to her than giving her breast milk until the end of the first year.

In the end of December, her reflux started getting much worse. Medication didn't help. She had spent months throwing up every evening, several times a day and night, but it started to wear on her. Her bottle feeds started taking longer and longer. We began logging how much time each feed took, and how much she took. She continued to gain weight and take in the required amount of calories (we fortified the breast milk to twenty-two calories per ounce instead of the natural twenty). We started feeding therapy, but didn't really know what to work on, as she still was sucking on the bottle, just not well.

Then she began having what we called "tongue wars." We could tell that she was in pain from the reflux, and she would push the bottle around in her mouth and refuse to suck. We tried about five different brands of bottles with different nip.ples.

She had a swallow study, where they watched her drink from a bottle. Sure enough, there was reflux, and it was bad.

She began taking in less and less every day. Our anxiety grew. Some days she would only take six ounces. Six ounces. She needed around twenty-four ounces to be healthy. She completely stopped gaining weight. Her doctor diagnosed her as "failure to thrive" and said that we needed to fortify the breast milk to twenty-four calories. We did. It didn't help.

We decided to try Nutrimagin, which is a formula which is already broken down and pre-digested. She did better on it. At the time I thought it was because of the pre-digested thing, but later I found out that it was the consistency that she liked. We added rice cereal to it and she seemed to do better than with my breast milk. At first this killed me. All of those hours that I pumped and the immunities that it gave her...But I would rather her eat than not. After some time, we tried to introduce breast milk back into the picture, and her eating would get far worse. We tried this on two different occasions, with each "try" lasting a week or so. The breast milk tasted good (yes, we had to try it), so taste was not a factor in her not liking it.

Honestly, I don't remember every detail. I don't even know what month I am describing. It was a very anxious time in our lives. Both of us were on edge and worried. I was depressed. Watching your baby stop eating is like a knife in the heart.

I distinctly remember attending a babywearing class, where one of the moms kept trying to tell me to bottle feed Sweet B in the baby sling, with her mouth next to my bre.ast, and that she would eventually start breastfeeding. I tried to explain to her that we were in feeding therapy, and that we were very close to getting a feeding tube. She didn't listen and didn't care, and kept trying to convince me to re-lactate, even after I told her that pumping and then bottle-feeding Sweet B takes all day and doesn't allow me to spend quality time with her. I was shaking with anger, but I just allowed her to talk at me. I didn't have the energy to fight her anymore. Sometimes people just need to mind their own business and not give ass-vice. Unless you are in that someone's shoes, you do not know their situation. Also, I had gone through a rough time when I considered feeding my baby formula, but then I learned that what is important is that you just feed your baby.

Anyway, Sweet B's oral aversion became so bad that we could only feed her in quiet environments with the lights dimmed, and only when she was asleep. We spent all day long trying to get food into her. I was constantly on the phone with her GI nurse, worried about dehydration. She took sixteen ounces a day on a good day, and six on a bad day. She needed twenty-four.

We began to see developmental delays. After each feed, we had to prop her upright so that she would not throw up. We couldn't lay her down, and there wasn't enough time for tummy time because we were always trying to get food into her.

My hubby and I were anxious. I was depressed. (Hmmm...Did I already say that?!)

Sweet B was not gaining weight.

Sweet B was taking in dangerously low amounts of milk.

Sweet B was already not on the growth charts. Now she was even farther behind.

Sweet B was now showing developmental delays, and we didn't know if it was due to the lack of nutrition or the lack of time being able to work on her skills, or something else entirely.

Her doctor said that it was time for "the tube." When she told us, I cried, out of sadness and relief. I wanted her to get enough nutrition to thrive, and she clearly wasn't doing that. I wanted our lives back. I wanted us to be happy. In my heart, I knew that we were heading down a dangerous road that would lead to hospitalizations from failure to thrive. I knew that we had to do something. Some people didn't understand. I am sure they thought I was crazy. Sweet B looked fine. Well, that was because her body began conserving all of the calories and she learned to live on very little, just like she did in the womb. IUGR (Intrauterine Growth Restricted) babies often have eating troubles, because they are used to being deprived in the womb.

Sweet B was hospitalized. Her GI doctor insisted that she have an NG tube first, so that we could see if she could tolerate tube feedings with her reflux. Many times, babies with feeding tubes and reflux also need a surgical procedure called a fundoplication, where they do some stapling in the esophagus area, which keeps them from refluxing or throwing up. The surgery is a big deal though, and often times it results in dry retching. Sweet B's stomach also may not empty as quickly as it should, and a fundolipication can make that even worse. So, we had to tread carefully. The surgery is not done nearly as much as it was in the past, due to the complications after the surgery.

In the hospital, they inserted the NG tube through her nose, and it was awful. I knew that it could cause her oral aversion to grow even worse. What was supposed to be a two day hospital stay turned into nearly a week. She kept vomiting and obviously could not handle the volume of food we were giving her. I also insisted on continuing to bottle feed her during the day. I did not want her to stop eating orally. So we still had the stress of bottle feeding her, but we could relax in the fact that she got her required calories. Well, that would be the case if she didn't throw up constantly.

The doctors called my GI doctor and told him that Sweet B would most certainly need the fundolipication surgery, in addition to the g-tube surgery. (The g-tube is a gastrostomy tube which is in the stomach).

We were sent home with the NG tube until we could get the surgery scheduled, and I was terrified. All it would take would be a slight move and we could be pumping milk into her lungs. I could hardly sleep as that pump ran at night. Meanwhile, the tube in her nose and down her throat worsened her oral aversion, as I had predicted. Bottle feeding became even more of a nightmare, if that was even possible.

I spoke to the surgeon and begged to have the surgery done quickly. I hated the NG tube and it was making things worse. He obliged and we found ourselves in the hospital again a few days later.

I was so anxious, as I knew that the fundolipication could cause her to stop orally eating all together. She would be under anesthesia and intubated. We had only been in the hospital for a few minutes when the surgeon came in and told us that he was very uncomfortable doing either procedure. He said that he doesn't do fundoplications in neurologically normal babies. He felt that we hadn't exhausted all of our options. I have to admit that I was relieved. (We later found out that some other surgeons do fundolipications in neurologically normal babies. We also found out that some will do a J-tube first, which is a tube that goes in the jejunum, and completely bypasses the stomach. However, babies with a J-tube need to be on a continuous feed, and that makes it very hard to transition them to real eating later on. Besides that, continuous feed requires them to constantly be hooked up to the tube.)

They wanted us to stay in the hospital and get her on a good feeding plan. They tried to convince me to keep her on an NG tube for a long time-maybe even months. They didn't want to do an invasive surgery and place the g-tube. I didn't feel right about this. I wanted them to just do the surgery, but they said that a g-tube without a fundolipication is just asking for trouble, due to the reflux. I told them that the NG tube scared me. I didn't want to learn to place it by myself. I am not a nurse and I do not feel comfortable doing that. But they convinced me that I would be able to do it, or if it came out then I could just go to my doctor's to have it replaced. (Not as easy as it sounds.) They said that we could do an NJ tube, which is a tube that goes in the nose and into the jejunum, but that would have to be placed each time with an X-ray, because you can't put it in properly without one. I quickly said absolutely not to that, as I was not about to get an x-ray every day when she pulled it out.

We stayed another week in the hospital, where we met with her GI doctor, a feeding specialist, a dietitian, and the surgeon. The social worker even came to see how I was doing and to talk to me about the stares that I would get with a child with a NG tube and ask how I was doing emotionally. We tried several formulas because breast milk cannot go into the pump that she used at night. (The fat rises to the top of the bag and doesn't go into her body). We met with an occupational therapist who scared the crap out of me about how delayed Sweet B was in her gross motor development. I tried to tell her that it was due to her eating issues, but she still made me feel horrible. She was horrified that we could only feed her when she was asleep. Her advice was to only feed her when she was completely awake. I told her that meant that Sweet B would never eat.

This was when I realized just how important it was when I was a teacher, to be sensitive when talking with parents. No wonder so many of them were so anxious about their child. We are dealing with sensitive issues here! No parent wants to hear that their child is not progressing as they should. In hindsight, I should have requested to never meet with her again.

Side note: Here is a lesson on infants and sucking. They are born with a sucking reflex. Sweet B didn't use hers for five weeks in the NICU. She still had it when she started bottle feeding. Over time, they can lose this reflex. This is why babies with feeding problems often do much better when they are sleeping, because it is a reflex for them. When they are awake, they can't coordinate themselves and they don't even want to due to the pain that reflux has caused them which has in turn led to their oral aversion.

Anyway, after seven days, we left with a feeding plan which included three to four bottle feeds during the day, with putting what she didn't take through her NG tube. Then at night, she would be on a continuous pump at forty mls per hour, which is over an ounce per hour.  We were given a stethoscope in order to check for proper placement of the NG. We were given instructions on how to place the NG just in case she pulled it out. (Before we left the hospital, she had pulled it out three times!) I felt confident that we would continue her feeding therapy, and she would be off of the NG tube quickly.

How I wish that would have happened. Her oral aversion got even worse, to where she was barely taking anything by the bottle. She pulled her NG out and we had to go to the doctor to replace it, where the nurses there were even worried about how to place it correctly. Trust me-sticking a tube up your baby's nose and down into their stomach is terrifying, especially because you can accidentally place it in the lung. And you DO NOT want to pump milk into their lungs.

Anyway, the next day it came out at night, and we had to put it in ourselves. It took us an hour. Both of us were sweating profusely, Sweet B was bawling (it is very uncomfortable and makes you feel like you are gagging) and there was medical tape strewn all over the floor. We had to pull it because we couldn't tell if we had placed it in the right place. She went the evening without food.

I called and begged our surgeon to do the g-tube surgery quickly. He understood, and booked us right away. We would not do the fundolipication right then. We would wait and see if she needed it.

Before I tell you the rest of the story, let me tell you about how I was doing emotionally. I was a mess. I had researched and obsessed and talked to so many people about this decision. I don't know if people understood why I was going to go ahead with it. I was in constant tears. My baby was taking in food orally by herself, at about eleven ounces a day on average, but I could not get her to take more.  I had spent the last few months trying every single thing and I had tried to convince myself that I would fix this issue. But I just couldn't. And that feeling of defeat caused me such sadness and anxiety. It was a dark time in my life. People suggested things, and it was so frustrating for me, because if you don't have a child with a feeding disorder, you just don't understand that it's not as simple as adding sugar or changing the bottle or formula or timing of her feeds.

We were also seeing other specialists for other things, which was causing me even more anxiety. She had to see an eye doctor, as all preemies do. He told us that she is extremely far-sighted, and that she definitely needed glasses. This was disappointing, but I was okay. But I wasn't okay with what he told me next. He told me that he thought she might have Goldenhar's Syndrome, which involves hearing loss and sometimes cognitive problems. He thought she might have it because she has a dermoid cyst on her eyeball, as well as a tiny skin tag on her ear. He wrote down the syndrome on a piece of paper and flippantly told me to go and see the geneticist. Needless to say, the waiting to see the geneticist was excruciating. When we finally got in to see him, we had to meet with a genetic counselor again. Then the geneticist walked in the room and immediately told us that she didn't have Goldenhar's and that she was fine.  By this time I was so darn tired of people trying to find things wrong with her. It was exhausting. Besides that, we had already done every test known to man on her in utero, and she was completely normal. She had a little tag on her ear and a cyst on her eye. That was it.

Back to her eating: It came down to this: She wasn't getting enough nutrition for her body or brain. It was crucial in that point of development to get enough nutrients. This lack of nutrients could impact her forever. She already had a very bad start. I had to suck it up and do right by my baby. I didn't want to have to feed my child by tube. I didn't want to have an IV pole next to her crib every night. I didn't want her to have to go under anesthesia or have a hole in her stomach. But I had to follow my maternal instinct and give her the chance to be the best that she could be. She was unhealthy. When she entered the hospital she was severely dehydrated. That is not healthy. I had to be strong and just do it.

So we did it. We only stayed in the hospital for three days. It was relatively easy, and since we already had an eating plan from our previous hospital stay and since we knew how to do bolus and pump feedings, we were cleared to go home.

It was very odd feeding Sweet B through her stomach. It hurt my heart to see it. Her bottle feeding continued at about eleven ounces per day, and we would pump the rest in at night. Sometimes she would only get six or nine ounces by bottle, so we had to pump in more at night, which would cause her to wake up refluxing and coughing and throwing up. We were very worried about her aspirating on her vomit, and called her surgeon wondering if we should do the fundolipication. That morning we were both frantic and I was in tears. She had vomited all night from her reflux and I wanted her to have the fundolipication that day. He said that if she stopped growing or developed pneumonia, then yes, we would do it. If not, it just wasn't worth it the possible problems that would arise with it.

We continued to battle her reflux at night and during the day. We would get up at 2:30 am to pour in new formula (this was before we found out we could just keep it cold with a bag of ice). We found that I could not sleep in the same room as her because I would constantly watch her to see if she was breathing and if she was choking on her vomit. So my sweet husband slept in the room with her. Several times a night she would choke and he would come and hold her up to catch her vomit.

During this time we changed her from sleeping in a sleeper to her crib. This posed challenges but I wanted her to be able to spread out. I tried special wedges and slings, but she hated it. We ended up having to elevate one side of the crib and put blankets under her butt to keep her from sliding down. I worried so much about SIDS and her suffocating on the blankets, but her doctor reassured me that she was old enough to turn her head if she got stuck against a blanket.

Now we are almost current. About a month ago we saw her continual decline in bottle feeding. Sometimes she would drink three ounces a day. But we would still try three to four times a day. This was exhausting. It was making her more orally adverse and taking precious time away from her working on her gross motor skills. She also was not getting enough during the day so we would have to pump in a lot more at night, resulting in vomiting episodes during the night, which are scary and lead to very exhausted parents.

I decided to make some changes. First, I was done with the bottle. This was hard for me, as I had spent the last five months insisting that she continue bottle feeding. But in my heart, I knew that this was detrimental to her. She needed more time working on her gross motor skills. This was better time spent than begging her to take the bottle, which in turn made her loathe the bottle or food in her mouth, even more.

As of three weeks ago, we started bolusing her three times a day. First I spend time teaching her to drink from her honey bear cup. Then we give her solids. (I realize that I left out her consumption of solids. Basically, she flat out refused solids for months, but we would still try twice a day.) Anyway, when I dropped the bottle feeding, she started eating solids willingly! It was shocking! After her solids, I do a bolus feed of four ounces of Enfam.il AR, which already has rice in it to keep it down. (Bolus feed is when you put the formula in through her tube by using a syringe and an extension, rather than a pump. It takes a long time because if you push it in too fast, she throws it up). Then at night, we lowered her pump settings to forty mils per hour, instead of fifty, and she stopped coughing at night. She didn't throw up in the morning. Yes, this feeding routine is exhausting, but I believe that it is much better than the bottle.

We are in the process of getting a new feeding therapist for reasons that are too difficult to explain here. So until that time, I am it. (Which is scary because I am most certainly NOT a feeding therapist! Thank goodness for my friend, Deni!)

Sadly, a few weeks ago her reflux came back badly and she started refusing solids again. However, she is actually sipping from her honey bear cup, even though she spits it out most of the time. My husband seems to be "the chosen one" at the moment, and she will take some solids from him, as long as it is baby mac and cheese or sweet potatoes.

In summary, the last six months have been hell. We brought our baby home from the NICU confident that she would be okay, and never in a million years thought that she would have feeding difficulties. In a sentence or two: Her reflux caused her to have oral aversion which led her to stop taking the required amount through the bottle. Now we have oral aversion to battle and it is going to be a long one.

I am starting to recover from the shock of the last six months. Most people haven't experienced this, and therefore don't understand how anxiety-inducing it really is. It is an issue that makes me lonely. In my real life, I know absolutely no one who has these feeding issues.

I put no blame on my doctors. I believe that in hindsight, we should have skipped the NG tube. However, we needed to do it in order to find out if she could tolerate tube feedings. We needed to go through every step. I think that our doctors acted from a good place, and did the best that they could. I wish that I had gone ahead with the g-tube sooner and that they would have let me. But they wanted to take the least invasive road first, which I completely understand.

I spent a lot of time beating myself up over my decision and wondering if I could have just gotten her to take enough food on her own. But my husband has reassured me time and time again that I had tried everything. This was in Sweet B's best interest even though it was uncomfortable for me.

Now I see that ever since we stopped the bottle, she started rolling. Then she started sitting. She is playing with her toys and her teacher says that she is very smart. She is doing so much more. I still dread mealtimes, but it is nothing like it was before. Today I told my husband that he had to feed her solids, or else he would come home to find the walls padded for my own safety. We rescue each other like that. He knows when he needs to step in and do it. We have quite a system worked out that works well for us. There are three mealtimes per day, and I usually do two of them. Today I did three, but most of the time he does the evening one so that I don't go insane. (This guy of mine is pure heaven.)

This is going to be a long haul. We will be in feeding therapy for a while. We have to get over her very sensitive gag reflex and this reflux needs to resolve. Parents of children with feeding disorders often say that this is one of the most frustrating things to deal with. It is a painfully slow process that often seems is doing no good.

People often ask me when she will be off of the tube. The answer is that I have no idea. I am extremely confident that she will eat cake at her wedding. I am not so confident that she will eat turkey at Christmas this year. It could be in six months or a few years. It is whenever she gets the right help that she needs, and when she is ready.

So I leave you with this...Sometimes the thing that is right for our children is not what everyone else thinks is right. You, as the parent, usually know what is best for your child. And the best decision might be one that is scary and out of your comfort zone. People might not understand it and they might question you. You might have to do things that you never in a million years imagined that you would have to do. You might find yourself saying something like, "My baby is tube-fed" and you might get weird looks or people who wonder what is wrong with your baby. You might get tired of explaining the problem. You might wish so badly that your child would just eat normally. You might feel so afraid that your child won't get there or you might just see a child holding their own bottle and drinking it, and you might want to scream at the mom, "YOU ARE SO LUCKY! ENJOY THIS!"

But then you realize...you will do anything for your baby. Your baby is so incredible and you love them more than you can even describe. You know what is right for them and you will put in the time that it takes to give them the best possible chance at success. You will fight for them and you will tell them that you believe in them. You will have hope. Because you have to. There is no other choice.


Most days I am okay with the tube. Some days I am overwhelmed by her feeding problem. But it is a small price to pay. She is here. She is healthy. She is beautiful. She is a miracle.


I leave you with these pictures of Sweet B with the NG tube in the hospital. It was such a scary time. But isn't she just beautiful? Isn't she just so brave?