One Year Out: Olive the Eater

We are officially one year out from our adventure to Virginia to participate in the Encouragement Feeding Program, and Olive is eating. Actual food. Mac 'n cheese. Pizza. Watermelon. Strawberries. Lots of cheese. Bread with peanut butter. Granola bars. Pancakes. We are kind of freaking out about it over here. She has made so much progress in the past five months. It is unbelievable. Is she eating a large volume? No. Is she doing it all on her own without large amounts of encouragement and motivation? No. Is there a reward system in place where she earns stickers to watch her bestie Peppa Pig on the iPad? Yes. Is it an easy, stress free experience? Nope noppity nope. BUT. She's doing it. One bite at a time.

The Peppa Pig reward chart from Ms. Heather.

In June we started seeing our favorite feeding therapist once a week again after a year long hiatus. There are ebbs and flows in progress with eating skills and times where a break is valuable, but our therapy gap was purely due to our medical insurance. As any parent of a medically complex child can tell you, insurance is a pain in the ass. They don't want you to get the best care for your child. They want to save money. Plain and simple. It's a business. A business that profits around $5.5 billion each year in the case of our insurer, and profits inexplicably rise as consumer health care costs continue to soar. And Olive's feeding therapist, the only one of ten that we've seen that has been helpful, is out-of-network.

Working on mouth exercises at feeding therapy.

Thankfully I finally managed to get her approved at in-network benefit levels, but it was a lot of work involving requests and denials and appeals of denials and a whole bunch of paperwork. We received help from her pediatrician and the NICU follow-up clinic, with the doctor there suggesting that I try again as previous attempts had failed. Persistence is key when it comes to insurance battles, and it paid off as we were allowed to have twelve visits (one per week) with our therapist beginning in June. We now have to ask our pediatrician to request a renewal of this prior authorization in order for twelve more visits to be approved, but this will hopefully continue indefinitely as we are now on our second set of twelve visits.

Olive's first ice cream truck experience.

Ms. Heather, as we call her, is a solo practitioner with a small office in Edina, and Olive loves her. So do we. She is a speech pathologist by trade with expertise in feeding issues. I think it was partly that Olive was ready to advance her skills and partly due to Ms. Heather's help, but at the beginning of the summer Olive started to make some serious progress. Most notably is that she finally caught on to the whole biting and chewing element of eating. She was nearly three and a half before she ate a goldfish cracker, but she finally learned how. It started with the baby goldfish, and now she is plowing through full size crackers like cheddar bunnies, cheddar squares, animal crackers, butter crackers, and goldfish. She has a large repertoire of "dry, crunchy foods" that she eats, her favorite being pretzels. With Ms. Heather's help and lots of practice placing food on her back molars (or "chompers" as we call them), she learned to take bites with her front teeth and chew with her back teeth. This was years in the making, and it took a lot of times choking, gagging and vomiting to get it down, but one day she mastered it without us even realizing it.

The aftermath of shaker cheese.

She also started working on softer foods like bread and noodles and all the variations of those items. Bread can still be difficult for her, but she works to "smush and smash" it on her "chompers." She has blown us away with her emerging ability to eat so many things. Buttered toast. Cheese quesadillas. Cheese pizza. Pita bread. Spaghetti with marinara sauce. And her most favorite food of all? Cheese. She is a cheese lover. Shredded cheese. String cheese. Shaker cheese. Cubed cheese. Spreadable cheese. It is her go to food, and she is really good with it.

Dining al fresco in the backyard. The chipmunks love her.

If you ask Olive what she wants to eat, she will inevitably say, "String cheese, pretzels and cheddar bunnies." That is her comfort zone right now. She will sometimes say "fancy cheese" because we ARE fancy, and we occasionally buy the Cracker Barrel cheese on sale at Target. She will happily eat that if cut up in small cubes. And when I say small, I do mean small. People are always surprised when they see exactly what I mean by a "small piece." It's about the size of a rice krispie for most foods outside of her comfort zone and perhaps just slightly larger for cheese chunks. Because if you leave her with larger pieces and the instruction to take bites or nibbles, she invariably shoves it all in her mouth and struggles with it. It is still work for her. Hard work. She doesn't always want to eat, and she rarely wants to eat new and scary foods without a lot of direction and help, which has been difficult to give in the wake of her sister's arrival.

Practicing her blowing exercises at home.

Ms. Heather gives us "homework" to work on each week, which typically includes some mouth exercises with chewy therapy tools to work on things like jaw strength and food placement, some directives about meal times, some directives about food choices, and sometimes new ideas for tweaking our tubing schedule and amounts in hopes of slowly weaning. With Ms. Heather's help we have been able to cut out Olive's morning tube snack, afternoon tube snack and late night snack in the past few months without seeing a slide in her weight. This is huge progress. Instead of six times a day we now only tube feed her four times a day, with the fourth one being only water for extra hydration after she goes to bed. This means she has to eat orally to make up those calories.

Raspberry picking.

We are supposed to normalize oral eating and mealtimes at this point, but it's hard to not feel the added pressure to make sure she drinks milk and eats a significant amount of food throughout the day as we cut back on the tube feeds. Our biggest hurdle is the volume she takes in. It is still small. I honestly don't know how it compares to a "normal" three year old. On a good day she will sit down for a snack and have ten pretzels, five cheddar bunnies and half of a string cheese along with three ounces of whole milk. On a bad day she'll have a few sips of milk and one pretzel. And while I think that is in line with what typical children do, it's hard when you have the onus of the third percentile hanging over you. But it seems that no matter what we do, she is just a small kid and probably always will be.

Summer calls for extra hydration. We tube feed anywhere and everywhere.

We are incredibly proud of her progress and determination to learn how to eat. It's really mind blowing in comparison to one year ago when we were in Virginia at the feeding program. Back then she could basically only eat goat cheese and other super soft, dissolvable foods in tiny quantities. She can now handle difficult foods that require a lot of oral motor skills like biting, chewing, and moving food around with her tongue. But it's still a work in progress. And now that we had that burst of progress we are settling into a lull in the progress. She still can't eat things like apple slices or carrots. Things that her peers gobble up at snack time at school. But we are confident that she will learn in her own time.

She ate this entire pancake with syrup.

It's important for us to be realistic with our goals for Olive. Our end goal is obviously for Olive's tube to be removed and for her to eat 100% of her food orally at some point. We used to say by kindergarten, but I don't know whether that is a realistic goal for us anymore. We've adjusted our expectations, and our new goal is for Olive to be eating enough at five years old to be able to go to kindergarten and not need to be tube fed during the school day. That is our reality. I would of course do anything for Olive, and if that means going to her school every day for lunch and tube feeding her, I will. But that is a last resort. I firmly believe that if we keep working on it every day at every snack and at every meal, we can get there. We may still need an early morning or late evening tube feed, but that's ok too. It's impossible to know where we'll be. For now, we are just plugging away with the eating while still blending her tube meals to give her the best nutrition we can.

First day of preschool. September 2015.

In other news, Olive started preschool in September, and she absolutely loves it. It is a small neighborhood school that we can walk to, and she goes three mornings a week for two and a half hours. She was so ready for it, and she is truly blossoming there. Last year she threw up from anxiety pretty much every time we went to our mommy and me class and swimming and gymnastics. This year she threw up once: the night before school as she laid in her bed after we tucked her in. As I was taking her out of the shower following the clean-up detail, she looked at me with her big brown eyes and said, "mommy, I was nervous for my teacher." And that's what it was: nerves. But the next day she walked into school so excited and confident that I almost didn't recognize her. She didn't even bat an eyelash when we said goodbye and walked out the door. She has looked forward to it ever since, and she wishes she could go every day.

 She insisted on going in the pumpkin like her sister.

She is learning how to socialize and play with other kids there, and she even has the opportunity to stay for lunch sometimes, which is great practice for her to be with her peers as they eat. She also gets this opportunity at snack time daily. We discussed Olive's eating issues with her teacher of course, and thankfully she has been wonderful about it. We send a reserve of easy snacks for Olive (cheddar bunnies, veggie straws, etc..), but we've also asked that she be able to try what everyone else is eating too if she's interested. I didn't believe it when her teacher told me that Olive ate a good amount of yogurt from one of those squeeze tube things. She's always surprising us as she has never done that at home. Peer pressure can be a wonderful thing at this age for a kid that has no concept that most kids don't eat like she does. Normally our philosophy is more "you do you," but with eating we would love for her to want to be like everyone else at the table. Now if only I could get her to tell me what she ate for snack at school. She almost always reports that she ate a custard donut. I confirmed with her teacher that they have never in fact had custard donuts for snack. Daddy pig, however, is a big fan of them in Peppa Pig.

The doctor and her patient had a splendid Halloween.

The biggest change in Olive's life is obviously the birth of her sister. Olive was the be all, end all before September, and her life changed in a very dramatic way. She is no longer the center of attention, and I flat out don't have the time anymore to work with her on her eating as much throughout the day. Little miss June has been a handful in ways that I never anticipated before her birth. I never thought about the fact that I may need to tube feed Olive while holding or feeding a baby. It has really upped my multitasking game, and Olive is not happy to share the attention. It hasn't necessarily brought out the best in any of us. Olive acts out, and we get frustrated and respond with anger more than we should. Change is hard for us, and it always has been. But in time we are all adapting to our new family, and Olive is truly a joyful little girl. She is proud of her sister, and she really can't wait to be able to play with her. While this fall has definitely been a season of flux for us, I'm hopeful that we will settle into our routines and all be able to take a breath after a chaotic few months.

Olive and June.

For now I am ensconced in the daily grind of tube feeding and oral eating and working on eating skills with an almost four year old while also breastfeeding an almost three month old, which is an eight or nine times a day commitment. I hate to use the terms "normal" or "typical" because what does that truly mean and who fits into this cookie cutter mold of normalcy? And really who wants their kid to be just like everyone else? But it has been odd to have a "typical" baby in Juniper. She is eating and growing and developing normally, and while that is amazing, it has also led to some heartbreaking moments. When we gave Juniper her first bath at home with Olive there, Olive looked at her baby sister in the bathtub and then looked at me and very earnestly asked, "mommy, where is her tummy tube?" My heart broke for her in that moment as I watched the realization on her face when I explained that Junie doesn't have a tummy tube because she wasn't small and sick when she was born. I think that was honestly the first time that Olive realized that having a tummy tube isn't just something that all babies or little kids have as she may have thought. She moved on quickly of course, but I still dwell on it as it makes me worry about the future and whether Olive will feel different or have her feelings hurt when other children notice her tube or how she eats differently. And at some point in the not so distant future it is likely that Juniper's eating skills will surpass Olive's. My only hope is that Olive is motivated by that and not disheartened.

Careening down the hill on her favorite ride.

Far from average, I'm thankful that Olive is herself: an opinionated, feisty, little spitfire. It will serve her well in life. When she was still in the NICU weighing in around three pounds a nurse looked at me and said, "well, you're not going to have to worry about her on the playground." I know exactly what she meant by that. Olive is a willful, spirited child, and she certainly never settles for the path of least resistance. She wouldn't be here if she wasn't tough. Her life started with a fight, and in some ways she has been fighting ever since. I try to remind myself on the really hard days with her that she is amazing in how far she has come.

Dain holding Olive at one week old so she can be weighed. February 6, 2012

November is prematurity awareness month, and I've had a constant reminder of this on social media with accounts I follow like the March of Dimes. While Olive's start as a micropreemie no longer defines her, it obviously still affects her life. She's not a "typical" preschooler. This past week she has been sick. And while I caught myself telling somebody that it is "just a cold" for Olive that means that we have to do tylenol through her tube and extra hydration through her tube and clean up round after round of vomit because she coughs so hard that she throws up. All from "just a cold." And it has been a major setback for her oral eating. We were preparing to cut back 25% of her tube calories to try to stimulate more hunger and increase her oral volume, but that will now have to wait as she has essentially stopped eating more than a bite or two for snacks and meals in the past ten days. It's beyond frustrating, but in the grand scheme of everything Olive, it's a minor setback. We know that she will bounce back in her own time and continue to amaze us as she has from the beginning. Her survival wasn't a given, and her world was incredibly small living in a plastic box for three months and then hardly leaving our house for two years. But coming up on her fourth birthday, the world is hers, and she's not just surviving anymore, she's thriving.