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.