Tube Feeding: Trial by Fire

Having never known anyone who was tube fed, it was all brand new to us when Olive received her g-tube at 5 months old on June 29, 2012. She was fed with an NG for about three months following her premature birth, but the nurses caring for her did all of the actual tube feeding. Two months following her discharge, our daughter was taking milk orally but not enough to sustain her weight or grow. She was admitted by her pediatrician for a nutritional assessment with a failure to thrive diagnosis, and two days later she had surgery to repair two hernias along with a PEG tube placement.

The attending doctor and the gastroenterologist both felt that a g-tube was the best course of action, and Olive's pediatrician agreed. In retrospect, we were told very little.  The gist of it was that the tube would be great because we could use it just at night to make up her extra calories while she began to eat more and more orally during the day.  The gastroenterologist even said that she'd probably have it for just a few months. I'm sure they said something like they can't make any guarantees, but what we heard at the time was that this will be awesome for her growth, very temporary, and something we need to just get over the hump.

Olive with her PEG tube.

It did not go down like that. We went home with instructions to bottle feed during the day and run an 8 hour feed overnight into her tube. However, within three weeks she stopped eating orally completely. She refused, kicking and screaming when she saw a bottle. We had no choice but to begin giving her bolus feeds during the day through her tube. We had no idea how to even do that, only receiving a cursory crash course in the overnight feed with the feeding pump before we left the hospital. And during this whole time, we were still waiting for an appointment at the feeding clinic at Children's Hospital in Minneapolis. We had been waiting two months.

We learned how to bolus feed Olive through our own research. We even watched youtube videos of other parents tube feeding their children. Of course those children seemed much more cooperative than ours. Mostly it was trial and error. A lot of error at first. Tube feeding made Olive vomit. A lot. We tried various reflux medications with no improvement. I also stopped consuming dairy as I was pumping breast milk still, and we were fortifying it with hypoallergenic formula. Yet she still threw up. Sometimes 8 times a day. It became such a nonevent in our household that it was almost funny. Almost.

We finally figured out a way to feed her that entailed feeding her a little at a time over about an hour. It worked best when she was sleeping. This lessened her vomiting, but it still happened often. In September 2012, she had another surgery to replace the PEG tube with a low profile Mic-Key button. Following that, her vomiting increased. We didn't know why. Her pediatrician and gastroenterologist offered no solutions, other than continually suggesting she receive a j-tube, which would bypass her stomach lessening vomiting but requiring 23 hour feeds run on the pump. As in, the world's squirmiest baby would have to be hooked up to a feeding pump all day. No thanks. That answer didn't work for us. We broke up with our pediatrician. We also got a second opinion at the Mayo Clinic.

We met with the head of the pediatric gastroenterology department there in November 2012. One of the best decisions we made. They did another swallow study and found nothing abnormal. The doctor told us there was no reason to pursue a j-tube. She also said there was no reason for further testing, as her local doctor suggested. We felt good about this advice, and even though the status quo wasn't easy, we wanted to feed Olive as normally as possible. With the support of her amazing new pediatrician, we discontinued her night feeds in January 2013. To do this required switching to bolus feeds around the clock because there was no way she could get enough calories in during the daytime. This meant essentially reverting to a newborn schedule of feeding Olive every three hours around the clock.  I didn't think we could get less sleep than we had been getting the past year as I was still pumping at night and we'd get up to change the bag on the feeding pump and vent Olive's tummy. And she wasn't an awesome sleeper. But sleeping right next to me in a cosleeper made for about 5 hours of sleep nightly for Dain and me.

Olive in her cosleeper. Her tubing ran out her sleeper
and the bottom of the cosleeper to the feeding pump that we
hung on a tripod.

Enter the sleepocalypse. At the same time we stopped the 8 hour night feed, we tried to move Olive to her crib as she was beginning to sit up on her own, making the cosleeper a dangerous bed.  It was a disaster. Olive refused to sleep in her crib.  One night I counted 18 times of putting her back in her crib.  If she cried too hard, she would vomit, requiring a big clean up in the middle of the night so "cry it out" wasn't an option. Plus, we were feeding her at midnight and three a.m. and six a.m., which meant that at 3 a.m. one of us was in Olive's room with her propped up on a pillow on our lap rocking her in the rocking chair tube feeding her over nearly an hour. Our priority was feeding Olive and having her keep it all in. Dain and I were zombies. At other times, one of us typically just rocked her while she slept as it was more exhausting to put her in her crib to have her wake up five minutes later. It was literally 3 hours of disrupted sleep a night. January-March 2013 was the sleepocalypse. I honestly don't know how we all walked away from that. It was ugly. For our mental health. For our marriage. For our general well-being.

This child never slept a night in this crib. Deceiving photo. (December 2012)

The only thing that kept us going was that we'd come too far to go back.  Our overarching goal has always been for Olive to eat, and we firmly believed that it's not natural to feed your child for 8 hours overnight, despite what some doctors told us.  The digestive tract needs a break.  To make it more manageable, we slowly began trying to fit in more calories during the day and cutting out the night feeds one by one. But that took months. One night out of total exhaustion and a massive kink in my neck from months of catnaps in a rocking chair, I took Olive into the guest bedroom and laid down in bed with her.  I slept two straight hours, and it was magical. Thus began our cosleeping. I never thought in a million years that we would be cosleepers, but it was out of sheer necessity.  We all finally began to sleep again, with Olive and I in the guest bed with no pillows or blankets and my hair in a ponytail because I was super freaked out about the safety of it. But it was honestly a matter of survival. And now we are all used to it. A little too used to it. We have no idea how we will ever break the habit, but I don't think I'll have to sleep with her in her dorm room.

By April 2013, we were finally able to get all of Olive's calories in during the day.  That was a major win for us.  Since then, she has been fed five times a day through her tube. She received breastmilk fortified with Alimentum formula to increase the calories until she was 15 months old or one year old adjusted, at which point we switched to a blenderized diet of real food. She was even able to transition to cow's milk, dispelling our belief that she had some sort of lactose intolerance.

All the while, we have been working on oral eating. We finally made it to the local feeding clinic in August 2012.  They told us that there was nothing to worry about as we could get her calories in through her tube and to come back in three months.  My mouth might have been hanging open while they told me that.  Because as a mother who has a child that literally does not eat, it is not an ok solution to say deal with it and come back in three months.  So we went to a different major local hospital to see someone.  He was great.  But there was no follow-up whatsoever.  In fact, he didn't return calls or do anything he promised.  So that was a bust.

We next tried private therapy in an office setting. It was pointless. They spent most of the time on motor skills like sitting. That's not what we were looking for. Finally, our NICU follow-up clinic recommended a private therapist who would come to our home, which was very appealing entering Olive's first flu/cold/rsv season at home. Our plan was to keep Olive pretty isolated until she was two years old adjusted (April 2014) at the advice of her pulmonologist. Because unfortunately Olive came home with chronic lung disease (and oxygen for two months) making it essential to try and heal her lungs without any further damage from a respiratory illness.  Thankfully, Ms. Heather as we call her, was a godsend in December 2012. Olive loved her. I loved her. She helped us with so many things and was our biggest supporter in tube feeding and switching to a blenderized diet. She was really our cheerleader and our teacher. And we needed that.

Of course Ms. Heather is out-of-network with our insurance. We thankfully received a grant to pay for her services, but when that ran out and our insurance changed to a policy with even less favorable out-of-network benefits, we tried another major local clinic in May of 2014. Another short lived disaster. We've resigned ourselves to paying out-of-pocket for a fabulous therapist as Olive just doesn't do well in a clinical setting.  However, even with a great therapist with us for almost two years now, Olive's progress moves at a glacial pace. That's not to say she hasn't made progress because she has, but it's really hard to see it when you are in the trenches on a daily basis trying to work with her on oral eating and tube feeding as well.

She dealt with the hummus because she wanted the plastic container. (May 2013)

She currently drinks milk from a bottle, which is huge considering at one point she wouldn't even look at it. We backed off when she started refusing it and gradually with no pressure to take it or not, she began to drink from a bottle again.  She takes one 2-4 ounce bottle daily along with sips here and there throughout the day. It's obviously not age appropriate for a two and a half year old to drink from a bottle, but that's how she prefers her milk so we're not going to take it away.  She will drink water from a sippy cup, and she can drink from a straw too.  She likes playing with juice boxes, but will only take about 5 small sips of the actual juice.

Olive's Kitchen (December 2013)

She'll also put any food she's offered into her mouth, which is big progress considering that she used to not let any food near her mouth or would gag and throw up with the smallest amount.  She can swallow purees now, though she has little interest.  The only food that excites her is goat cheese, of which she'll take 8-10 small tastes on an exceptionally good day. She'll also bite into food, which is a big step. She will bite pickles and crackers and string cheese. But she won't chew. That's kind of where we are stuck from a skill standpoint, with internal motivation and hunger being the other problems.

So that is where we stand. Olive is 29 months old and about 95% tube fed. We are happy that she is tolerating food and growing, but we are ready for her to eat, which is why our upcoming feeding program is so important to us. I'll be thrilled to walk out of there with a kid who can happily eat one goldfish cracker without choking and vomiting. That would be a win.

September 2014