Virginia or Bust

Boom. We’re starting a blog to document our upcoming trip to Virginia. On October 20, 2014, we will be starting a two week outpatient program at the University of Virginia’s  Encouragement Feeding Program. We are beyond excited about it. Our daughter Olive has been tube fed for most of her life, receiving a g-tube at 5 months old. While she has done exceptionally well in all other areas of development, she doesn’t eat.

She literally doesn’t eat. I realize that is a hard statement to conceptualize for those not immersed in the world of tube feeding so I’ll start at the beginning. Why doesn’t she eat? I’ve had doctors and specialists and therapists discuss this with me for over two years now, and I honestly still don’t completely understand it. There is not a simple answer.

She was born early. 12 weeks early to be exact. She weighed 1 pound, 9 ounces, which is small even for a 28 weeker and makes her a micropreemie. Her early debut obviously meant that she couldn’t eat when she was born. Although a fetus’s intestinal tract fully forms by 20 weeks gestation, the ability to coordinate sucking, swallowing and breathing is not typically developed until between 32-34 weeks gestation. And for Olive, she couldn’t even breathe on her own, being put on a ventilator at birth. To put it lightly, the girl had a lot going on with eating being pretty far down on the priority list.

The first step for Olive was total parenteral nutrition, commonly referred to as TPN. She essentially received nutrients through a PICC line in her leg starting with fluids and followed with minerals, vitamins, salts, and lipids, the amounts of which were all calculated on a daily basis after her blood draw. The nurses would change out these bags of fluids, vitamins/minerals and fats. My distinct memory is that one of the bags looked like Mountain Dew, which I found amusing in my delirious state those first two weeks.

After Olive was stable, she also had a nasogastric tube (“NG”) placed down her nose and into her tummy, through which she began to receive a very small amount of breast milk at two days old. I don’t remember exactly what amount they started with, but it was tiny. I want to say it was about a quarter of a teaspoon. Luckily, she tolerated it. I didn’t know enough at the time to be terrified, but necrotizing enterocolitis (“NEC”) is a very serious infection that preemies are at risk of when they start to have food introduced into the intestinal tract. Fortunately we never had any NEC scares, and Olive’s breast milk intake was continually increased until she was able to come off the TPN all together on February 17, 2012 (19 days old.)

Olive continued to receive breast milk through her NG tube right up until a few days before her discharge on May 3, 2012.  Olive was never a great grower.  She was born tiny, and she remains tiny. Three years later it’s easy to say that that’s just how she rolls and she follows her own curve, but in the early days it was more “let’s freak out about this in a calm way.”  She was weighed daily, her current weight being displayed on a board for us to see as we walked in every morning.  The doctors would comment on it on their daily rounds.  They wanted to see a 30 gram weight gain every day.  Olive rarely participated in that plan.

The doctors began to fortify my breast milk to increase the calories, adding something called Human Milk Fortifier to make it at least 24 calories an ounce. My breast milk was tested for its nutritional content, and I was then instructed to only give Olive hind milk, the fattier milk that comes after a few minutes of breastfeeding or pumping. She also had beneprotein added to my milk for a few weeks. She received fortified breast milk through her NG every three hours around the clock.

In the meantime, we started to attempt breastfeeding around 33 weeks. It was mostly a disaster. That did not deter me, but Olive was the most uncooperative breast feeder in the history of breastfeeding. She typically thrashed around kicking and hitting me before proceeding to crash into a deep sleep from all of the commotion. That went on for weeks and weeks despite my frequent attempts and many visits from the lactation consultant.  Eventually the doctors and nurses began to pressure me into bottle feeding. I really didn’t want to, but when a seasoned doctor is telling you that it’s the only way you’ll ever bring your baby home, you cave pretty damn quickly. Of course that was also the doctor who told us we held our baby too much and that we were spoiling her.

Olive received her first bottle on April 2, 2012, and she took 12 ml orally for an occupational therapist with years of experience with preemies. She started with one bottle per day and then moved up to two. Meanwhile, I was still trying rather unsuccessfully to get Olive to learn how to breastfeed. She never really excelled at bottle feeding, either, but somehow the nurses were able to get her to take a reasonable amount as time went on. Of course to do so required all sorts of prodding like stroking her cheek and giving her chin support. It wasn’t easy. And she pretty much was just getting by, not taking as much as they wanted or taking it as fast as they wanted. She was often bottle fed at first and then the remainder was tube fed. Yet, somehow, they decided she could try a 24 hour ad lib feeding test towards the end of April 2012. This meant she only ate orally for a 24 period with no supplemental tube feedings. She took 60% of her goal amount and didn’t gain weight, but this was apparently enough for her discharge to be put in motion.

I was there all day every day and some nights too, and I honestly still don’t understand how this happened. She wasn’t ready to come home. We weren’t ready for her to come home. We had no idea how to take care of her. We were literally thrown out to sea. And for the next 12 months, we barely had our heads above water. We brought home a 5 pound, 13 ounce baby on oxygen and an apnea monitor that we were supposed to feed 55 ml of pumped breast milk to every three hours. It seemed like a solid plan until we tried to implement it. It was an absolute clusterfuck.

Homecoming May 3, 2012

Olive refused to eat consistently at home. She began throwing up regularly. And she wasn’t gaining weight. It was an untenable trifecta of problems, and within two months, we were back at the hospital for a gastrostomy tube so that we could tube feed Olive at home. Her admission diagnosis was failure to thrive…as in, you two failed to help this baby thrive at home.  I know that’s not true, but that’s the conversation you have in your head while you’re fighting back the tears the first time you hear that awful phrase.

We were told that she’d probably just have her g-tube for a few months and that she’d learn to take more and more orally and become a more proficient eater, with the g-tube providing extra calories overnight until that happened. It never happened. Instead, our daughter stopped eating orally within a few weeks of having her g-tube placed. A possibility that had never crossed our minds. In retrospect, our naivety was our downfall. I should have researched it more. I should have gotten a second opinion. I should have never trusted our pediatrician. I should have requested a different gastroenterologist that actually answered my questions. All of the what ifs that come with a horrible situation.

Post Surgery June 29, 2012

But there was no turning back. Olive has been tube fed ever since. We’ve had all sorts of terms thrown at us: dysphagia, GERD, reflux, hypersensitive gag reflex, oral aversion, sensory issues, disorganized feeding, feeding mismanagement, etc…  A lot of blah, blah, blah. Even for someone who knows a lot about preemie feeding problems at this point. So back to the question of why Olive doesn’t eat. There isn’t truly a one line answer. She was born really early and never learned how to. She also never had any motivation to as we’ve always been so concerned about her weight that she is tube fed 100% of her required calories in order to ensure growth and brain development. She’s never felt hunger. She associates eating with pain as she definitely had reflux sometimes throwing up 6-8 times a day as a baby. And the list could go on and on. It doesn’t really matter since I know it is not one thing that we can “treat” in a traditional medical sense. She’s had swallow studies and allergy testing, we’ve tried reflux medication with no improvement, and we’ve seen over 10 feeding therapists.

I’ll follow up with more details, but suffice it say, it has been a long 2 1/2 years of tube feeding with little progress orally eating. We thought solids would be the changing point. They weren’t. Olive has never chewed anything in her whole life. She will “taste” anything but that means a tiny lick. She doesn’t consume any meaningful calories orally except for 2-4 ounces of whole milk in a bottle. She receives everything else through her tube, and since about a year adjusted (April 2013,) she has been on a blenderized diet of real food that we blend up for her with milk to make it fit through her tube.

"Eating" Lunch July 2014

Olive has a g-tube (an AMT Mini-One 16 French, 1.7 cm), which is a small plastic tube that is in her tummy with a feeding port on the outside of her abdomen. We hook up a twelve inch extension tube to the feeding port and then use a syringe to push in her food. She is fed five times a day: breakfast, snack, a bottle, lunch and dinner. She is offered food orally at all of her feeding times as well. 30 minutes before meals we tube 60 ml of water to prime her tummy. Then we push in 40 ml of food every five minutes for a total of about 145-155 ml per meal. She is very volume sensitive, and it took us a long time to get where we are. It used to take an hour for one feeding. Now it’s down to about twenty minutes. She is thriving on the blenderized diet so we are thankful for that, but we are still ready to be done tube feeding.

Which brings us to Virginia. For a two week feeding program that we hope will be life changing for all of us. It comes highly recommended from Olive’s former neonatologist, Dr. Hoekstra, who has sent a handful of kids there over the years with great success. We realize Olive won’t come home without her tube, but we need a jumpstart. We need her to start to want to eat. We need her to be brave enough to try chewing. We need a change as we are burnt out. Tube feeding is hard. And we’re over it. I’m a realist, and I know this may not be as magical as we hope. But we have no other choice. Nothing else has worked.

I plan to document this trip and our feeding journey for the other families out there like us. It is thankfully a small community. But the flip side of that is that there are few resources for children like Olive whose feeding problems persist with no medical reason for her not to eat orally. We live in a large metropolitan area, and we’ve exhausted the local resources. Sadly, the best things we’ve done for Olive (like switching to a blenderized diet) are things we’ve done on our own. We’ve had to research. We’ve had to network. We’ve had to find solutions for Olive. It shouldn’t be like that. No parent should have to watch youtube videos to learn how to feed their child. But thankfully other parents posted those because the community of similarly situated parents is the best resource available for tube fed kids.

Intensive feeding programs come up a lot in forums and facebook groups relating to tube feeding. This is our attempt to show what one of them is like. Because they are expensive. They are far away. They are a huge commitment and a total gamble. And I wish I could sit down and read a blog about what to expect.  One week until go time.

September 2014