Week One

Hard at work drinking her milk.

Are we glad we went to the Encouragement Feeding Program? Absolutely. Was it everything we hoped it would be? Absolutely not. And that reality has really sunk in now that we're home. We are eight full days out from our feeding program, and the transition home has been rough. Rougher than we expected. I am incredibly stressed. It is not acute stress. We've had that. It's just a subtle stress that permeates the motions of our day, sitting in my bones and weighing me down. Clearly we have yet to find a balance because it really shouldn't be as hard as it is right now.

We went into the feeding program with great expectations. And truly unrealistic goals. Thinking Olive would walk out of there knowing how to eat a cookie wasn't based in the actual reality of our daily existence, but I couldn't help myself from hoping deep down that it would all just click. It didn't, which is not to say we didn't make progress. We did. We learned Olive can drink 24 ounces of milk in a day. That's awesome. She is capable of putting calories in herself. Not enough to subsist on, but it's a start. We also made big strides with biting and starting to chew. However, it is going to be a slog. A slow slog.

O wanted to "snuggle with mommy" at the park.

Ultimately change is hard. And uncomfortable. And we are now faced with changing our routine that we've been following for about a year and a half. You cannot change what you won't confront. And while it is so tempting to just go back to tube feeding Olive all of her calories and not have to worry about her growth or nutrition or a seriously inconvenient schedule or the stress of coaxing a two year old into consuming something every two hours, now is the time for us to confront this head on. So we've committed to this path. I wouldn't say it has brought out the best in us this week. I've been overwhelmed having to go it alone for the majority of the time, but as we ease into our new normal it will hopefully get better.

We met with Olive's pediatrician on Tuesday, and for the first time in two years, Olive didn't throw up during our visit. Yes, you read that right. Our sweet daughter gets herself so worked up over the doctor that she throws up. I'm not sure if she was braver or more worldly after our trip or if she honestly just sensed that her mother was so close to losing it that her vomiting on the both of us would just send me over the edge. Whatever it was, I hope it sticks. It was suspiciously refreshing to see my child helping the doctor hold the stethoscope instead of kicking her as she tries to escape while screaming "go home." Olive actually walked out of there thinking it had been a great outing since she got to bring home not only two stickers but her very own popsicle stick from the doctor.

Big girl at the doctor.

I wasn't as enthused. Olive was the same weight as she was three months ago at her two and a half year well visit. So she lost weight while we were in Virginia. That may not have been obvious to Polly, but I knew that she had. At the pediatrician we always do a naked weight. At UVA Olive was always weighed clothed and usually after she had just drank four ounces of milk. So that may not seem like a big deal, but when you're eensy weensy like O, ounces matter. She lost slightly more than a pound. That's disheartening to me of course because my entire existence revolves around getting this little girl to grow. And it leaves us with a conundrum. How do we encourage oral eating by letting her feel hunger but still enable her to get enough calories to grow? Everything with this child is a catch 22 because she literally does not have the skills to consume enough calories to subsist on. So we have to supplement with tube feeding, which makes her feel full without putting anything in her mouth, which makes her less motivated to work on eating. Yet if we don't tube food, she will lose weight that she doesn't have to lose. For the time being, Olive's doctor and myself both agree that our priority still needs to be Olive's growth and development while working as much as we can on the eating skills that she needs to learn. The problem has been finding any sort of of balance with these goals.

Protesting snack by lying on the floor.

We left UVA with a solid plan to have Olive drink around twenty four ounces of milk a day, sit down for food at least four times a day and tube about ten ounces of supplemental food in the early morning and late evening. Funny how great a plan can seem on paper. It's the implementation that is a total train wreck. By day three, it was clear that we couldn't maintain this. The problem was that we were asking O to drink as much as she had in Virginia but tube feeding her more to make up that calorie deficit. This resulted in her throwing up. We were essentially overfeeding her as she would drink a lot of milk and then we would attempt to tube the six ounces of dinner as we were directed resulting in a seriously demoralizing Monday night after Olive threw up everywhere about five minutes after going to bed. There's a learning curve to this, and we are trying our hardest to catch up. Olive went the last week in Virginia without throwing up, and then proceeded to throw up at home on Saturday, Sunday, Monday, Tuesday, Wednesday and Thursday. We finally broke the cycle on Friday. Hallelujah.

Drinking and browsing. Toddler multitasking.

It's still not ideal, but our general plan of attack at the moment is to tube Olive's full breakfast (five ounces) as early as possible. Polly suggested doing this really early while she's still sleeping, but this advice doesn't work for us because it's not worth it to me to have to a) get up at six a.m. to sneakily tube feed Olive and b) risk waking up the beast at that time, making for a seriously long day with a toddler. So we are waiting until she wakes up. Then we are sitting down for a morning snack followed by lunch, and then offering her a bottle before nap fairly soon after lunch. Then I am tubing two ounces of blended food while she naps. Then we are sitting down for an afternoon snack and later dinner, followed by tube feeding a full dinner blend with some of it before bed and some while she is sleeping around 10:30 or 11. It is still a lot of steps of course, but we are giving it a go. In total honesty it seriously sucks. There is a lot of pressure to get her to drink milk throughout the day as that is the only real way for her to get calories on her own right now. On top of that, we're working on eating skills. Or trying to. This girl is feisty, and she just flat out refuses at times. So do we push her? Sometimes we do. Sometimes we don't. There's just no right answer to any of this.

This happened. We needed some extra joy.

We will need to weigh her weekly to make sure that she is still growing. If she's not, this plan will of course need to be adjusted. I meticulously chart her oral intake and her tube feeding intake and estimate her calories every day. It's unfortunately all trial and error at this point, and there has been dissension in the ranks this first week as Dain and I try to figure out how to do this. Everybody has an opinion. I do. Dain does. Polly does. The doctor does. The dietician does. Thankfully I hold the trump card as the one actually sitting in the trenches with this tenacious toddler. And as the one implementing all of these great plans, I've accepted that this is just going to be a process. I don't want to push her so hard that she pushes back even harder. I'm willing to work on Olive's timeline, and the girl excels at taking her sweet time. So we will get there. We are hoping that her oral skills improve in the next six weeks so that we can try another week over Christmas break where we allow her to feel pretty hungry. Because hunger is definitely going to be a part of this.

In the meantime, we are going to try not to sacrifice too much nutrition. She will be getting less of her blend, but we are going to tweak our recipes (like putting chicken in dinner instead of beans to ensure she's getting enough iron) and add a multivitamin with iron to her dinner blend in order to maintain some of her great nutrition. Because the difference between Olive on an incredible diet and Olive starving throughout the day is remarkable. We had the unique opportunity to give her a super diet when she was 100% tube fed, and we did. She gets things that we've never eaten ourselves...organic rainbow chard and organic collard greens? Whole Foods sells that shit people. So it kind of broke my heart to see her go from an energetic, busy toddler on that diet to a lethargic and whiney mess when her calories were cut at the feeding program and she was working on eating with  things like Cheetos and Slim Jims. Ugh. But what can you do? Nobody eats a perfectly proportioned diet perfectly balanced to fuel their body each and every day.

She's totally ready for winter.

So that's where we stand today. I could share more, but I exhaust myself just rehashing the details. I should also mention that although this is such a large part of our lives right now, our days are also filled with wonderful moments along the way. In fact, we had a huge win last week. I mentioned she didn't throw up at the doctor, but she also didn't throw up at tumbletots or at her preschool class. This is a major deal for her. Jaw dropping progress. I don't want to get too excited about it, but I hope this newfound bravery is a permanent change. At tumbletots she looked at me and said "I throw up mommy." I think my face said something that my mouth didn't because she studied me intently and then said "no, no throw up." And she didn't.

Olive's language explosion also continues to amaze me. The girl had less than five words when she turned two. She was supposed to have fifty. She crept along using mostly gestures and signs for the spring and early summer, and then it just exploded over the summer. Her doctor was amazed at the difference just from August. She talks all day and says the funniest things. "I wuv you" might be my favorite followed by "hank you mommy." Hearing her little voice narrating our day is always a bright spot even when she does yell about poop for the whole grocery store to hear like she did this morning.

Just a lot of this around here.

All in all it is great to be home. I'm planning to update this blog about once a week for those who want to follow along, especially the other parents out there with tube fed children. It'll be fun to be able to look back on it too for ourselves because it's hard to get perspective sometimes when you are in it every minute of every day. Hopefully we will fall into more of a routine this week. If anything we have the first snowstorm to look forward to tomorrow. Olive thinks we will be going sledding as soon as possible so we just might do that.

Day Ten

These two. 

Whew. We are back on our Minnesotan terra firma. The past few days have been busy with wrapping up our program, celebrating Halloween, traveling home and trying to settle back in. Friday was our last day of feeding school in Charlottesville. It was also Halloween, making a little more work for the parents and more fun for Olive. She wanted to put her costume on first thing on Friday morning, and then she was ready for trick or treating. As in, she thought we were going right then and there at 7 in the a.m. We told her it wouldn't be until the afternoon after feeding school, but a time frame of more than five minutes is still lost on her. She rolled into the hotel lobby with her bucket expecting to be filing it up with treats. She then proceeded to ask "What's next? Trick or treating?" throughout the day. Thankfully when we walked into the UVA building the woman at the desk had a basket of candy and stickers so Olive got a taste of the trick or treating life early.

Our first appointment was breakfast with Polly. Olive was so beyond over it by this point. Polly had warned us that most kids are at their limit by Thursday and noticed it with Olive on about Tuesday. It's a lot of work for a young child. In total we had 34 sessions with Polly in 10 days. And by the 32nd, Olive sat down, licked one piece of cereal, and yelled "I all done." It made for a long last day. Olive drank her milk with breakfast as she worked on putting stickers on a ghost with Polly, but she just had no interest in eating.

Following that, Dain headed back to the hotel to pack up all of our stuff and check out. Meanwhile Olive and I played in the play area and then headed to our last preschool class with Crystal. It was a pretty laid back session. Crystal did have a visual schedule for Olive, as we had told her that Jen used that successfully. It really helps a two year old understand what is going to happen by showing them a picture of each activity. It may be something we can implement at home especially on days out of the ordinary to try to alleviate Olive's anxiety about new places. Olive read a book with Crystal, painted mostly all over herself and her clothes, and worked on an alphabet puzzle. Then we ended with a lot of time to wash the dishes at the play kitchen. Crystal gave us some advice for things to work on at home, and she also gave Olive an awesome parting gift letting her keep the fire truck book with wheels that she loved reading and playing with throughout our time there. Crystal told us she couldn't imagine any other kid loving it as much as Olive. It was very sweet.

Showing off her skills.

Dain came back right as we were leaving preschool, and we headed back down for our snack with Polly. It went better than breakfast. There was a student sitting in to observe Polly, and it worked out great because it was like Olive was trying to impress her. Olive ate a few tiny bites of cotton candy, and she did a great job with a spoonful of goat cheese. She also let Polly help her put puff popcorn on her back teeth to bite it. And then she tasted some sweet tarts. She also drank her milk with less of a struggle than usual. Polly gave us the dietician's write up of where we can head from a nutritional standpoint, and we discussed what our plan should be at home. Then we had Olive's final weight check. She rang in at 10.5 kilos. So up from her last weight and from when we arrived. We'll take it.

The moon swing.

After a quick coffee run it was time to see the occupational therapist Ms. Jen for the last time. Olive put her costume back on to show her, and they had a time of it. They did a new swing called a moon swing where she would swing and then crash into a bean bag, and then she jumped onto a trampoline into the bean bag. Squeals of delight coming from our short stack. After that fun, they did a ghost craft and practiced scissors again. Olive finally got it for a few snips with a little help. Olive got to pick their final activity together, and she chose to play with Mr. Potato Head again.

After we said our goodbyes to Jen, we grabbed lunch on our own. Olive ordered herself a pickle, but it was a struggle to get her to eat anything or even drink her milk. It wasn't enjoyable for anyone and ended in me taking Olive outside before I was done eating while Dain hurriedly paid the check. The perils of ordering a salad. Not easy to shove in your mouth. We headed back to the day suite for a much needed nap for Olive. She fell asleep in about 30 seconds. After she woke up, we went to the play area for our last time. Patty gave Olive her last book, and we sat down to read it. Then she ran to play and another mom came to sit next to me. We had seen her the previous week with her daughter who looked to be about five or six. She wanted to tell me that she did the feeding program with her daughter, and she wanted me to know that it gets better. At that point I was so exhausted from our experience that I almost burst into tears. I managed to hold it together, but I was really just so touched that she took the time to come over and tell me that. Of course logically I know that it does get better, but when you are fully immersed it is hard to see the light at the end of the tunnel.

Ready to go.

We ended the program with one last snack with Polly. Olive took the world's tiniest taste of barbecue sauce and dropped the mic. Seriously. That was it. Polly didn't push her, realizing she was just totally exhausted. We talked with Polly while Olive played with books and drank her milk. Even Polly agreed that there would be no way to keep up with the feeding school schedule at home and that we will have to figure out what works best for us.  The feeding/eating/hydrating schedule over the past two weeks was a beast. As an example, here's what one day looked like:

 6:55 a.m. Tube 45 ml water while Olive sleeps
 7:15 a.m. Tube 60 ml breakfast blend as Olive along with half dose of medicine
 8:00 a.m. Breakfast at the table (tastes and 3 ounces of milk orally)
10:00 a.m. Snack at the table tastes and 3 ounces of milk orally)
12:00 p.m. Lunch at the table (tastes and 3 ounces of milk orally)
 1:15 p.m. Offer Olive a bottle before nap (2-3 ounces of milk orally)
 3:00 p.m. Snack at the table (tastes and 3 ounces of milk orally)
 4:00 p.m. Tube water (2 ounces)
 4:30 p.m. Tube lunch blend (2-3 ounces)
 6:00 p.m. Offer Olive milk and encourage her to drink it (2-5 ounces milk orally)
 7:30 p.m. Dinner at the table (tastes and 3 ounces of milk orally)
 8:30 p.m. Tube 5 ounces dinner blend
11:00 p.m. Tube additional water or milk or blend to make up for any calorie deficit

We all felt like this by Friday.

So that is 13 different steps in one day. This explains why I often feel like I can't even sit down and catch my breath for a minute. It is an insane schedule, and there is little room for deviation without sacrificing calories in. It is most likely unsustainable at home as it leaves very little time to do anything else. So our biggest struggle now will be balancing allowing Olive to feel hungry and work on her oral skills while not sacrificing her nutrition or growth. It is not an easy feat, but if I've learned anything raising Olive it's that you do what you have to do. It's completely irrelevant whether you think you can because you don't have a choice. You power through, and it does get better. You adapt. This is the way to teach our peanut to eat, and my hope is that in three years we will look back on this as a blurry memory, the edges softening over time as the struggle fades away. I need a few days to let our experience marinate in my mind before I decide my final thoughts on it, but it was bittersweet to walk out of that building on Friday night.

Our pumpkin.

After we said our goodbyes to Polly and Patty, we changed Olive into her pumpkin costume to finally get those treats. UVA holds a trick or treating on the lawn event from 4-6 where kids can go door to door at Thomas Jefferson's academic village, which is now student housing. It was insanity. Thousands of people. We waited in a long line with our grumpy pumpkin, and we hit about six doors before calling it a day. She was happy with her bucket of treats and ecstatic to get back in the car knowing that we were beginning our trip home. We drove to Richmond for our last night in a hotel by the airport. Dain returned the car. Olive and I printed our boarding passes and began to sort through all of our stuff. We repacked all of our bags trying to get each one under fifty pounds. We ate dinner on our hotel bed, and Olive crashed. We wanted to too, but we had to tube more food after Olive fell asleep, do the dishes, and organize everything for an early and quick getaway.

Airport tube feeding.

The morning came early, but we were all happy to be heading home. We were up before six, and we somehow managed to make it on the 6:30 hotel shuttle to the airport with three large suitcases, a carseat, a stroller, two backpacks, a ladybug bag, a cooler bag, my purse, and a worn out toddler trying to rally her excitement for all of the transportation the day would hold. Thankfully it was a smooth travel day. Our bags were all underweight by a few pounds. Security was a breeze. They didn't even examine our medical liquids as had happened in Minneapolis. We sat and watched planes out the window while Olive drank milk, and we tubed her breakfast blend. Olive was well behaved on the plane, fighting off her exhaustion. She wouldn't give in to the sleep. At about 10 a.m. she looked over and asked me if it was almost bedtime. Poor girl. We landed shortly thereafter, and she perked up for the moving walkway and tram at MSP. Dain's parents drove us to our house. Olive came in with the biggest smile on her face. Home.

Happy to be heading home.

We cranked the heat to bring it up from a balmy 55 degrees. Olive snuggled with a big blanket on the couch drinking milk while we began to tackle the unpacking process. We gave up at some point opting for a much needed nap instead. Olive was asleep around noon and slept solid for three hours. I was unable to resist her demand of "Mommy fweep with you in mommy bed." We both napped in the big bed, Olive letting out a sigh of peace as she fell asleep. It's good to be home. We walked to the grocery store later in the afternoon so happy to be able to travel by foot again even if it is in much crisper air than we are used to. Then our neighbor delivered a gift from all the neighbors for Olive and us. It was so sweet. Clearly someone has been reading the blog because Olive received "The Very Hungry Caterpillar" and an awesome set of duplos. Our neighbors also very kindly gave us a grocery store gift card and raked our leaves for us. We are really touched by all of the love.

The bite that did her in.

Now we are busy trying to figure out this new eating/tubing schedule on our own. Yeterday was mostly a bust. It's nearly impossible to sit down and work on eating while traveling and when Olive is worn out. We did more tubing than we have been doing. Dain is super optimistic about it all so he brings the family morale up. I'm more of a realist about it, but we both agree that she will get there in her own time. We had high hopes for dinner last night trying to model all the things Polly taught us. Olive took a big bite of a cracker. Too big. She gagged and threw up all of the milk that we had just spent twenty minutes encouraging her to drink. Then Dain knocked over his freshly poured celebratory cocktail. The dinner table was a nice mix of vodka, lemonade, and vomit. We took a deep breath and welcomed ourselves home.