November Wrap Up

Now that we're nearing mid-December I thought I'd update our small following (hi mom!) on the progress Ms. Olive made in November. And by progress, I mean she ate one mini m&m and one mini marshmallow one time, but the girl is trying. She really is. She looks forward to meals and sits at the table attacking her plate with gusto each and every time.

If her enthusiasm and effort correlated with her consumption, she'd be eating those dang goldfish by now, but unfortunately we're still plugging away with the concept of chewing. Her new approach is to stuff way too much food in her mouth and then attempt to chew. An interesting approach that almost always leads to her choking and vomiting when she can't quite get all of the mushy mess out. This does not deter her though. She repeats this process daily and even tells herself that she's putting too much in her mouth. It is obviously a game to her so while it's incredibly frustrating for me, at least she is openly exploring food and attempting to chew.  She just has to do it her way obviously. Even if it does mean her mother cleans vomit daily and does laundry nearly as often.

The end of November marked our first month at home from the feeding program. We went all in when we first got home, but five weeks later, we have definitely rethought our approach. We were pushing Olive to drink at least 20 ounces of milk daily with limited tube feedings. And it was a push. It was all day, every day of nearly forcing Olive to drink milk. In the car. At the table. Following her around while she plays coaxing three sips here and three sips there. It was high stress for everyone involved. And it was impossible to variate our schedule.

It was doable with just Olive and I at home during the day, but if you mix in any sort of outing or even a few errands it throws the schedule out of whack. This really hit home over Thanksgiving, where it was nearly impossible for us to follow the milk consumption regimen. Yet if we didn't, she wouldn't be getting enough calories. We literally couldn't drive thirty minutes and then take our time at the Christmas tree farm because we would be missing a milk session. Finally one day we sat down and asked ourselves why we were making her drink so much milk. Obviously it's great for her to be putting those calories in her body by herself, but apart from that, it dawned on me that we didn't really need her to drink that much milk.

Luckily Olive was up a pound at her weight check on November 25 with her pediatrician. We were all happy to see that as it's hard for this pipsqueak to beef up especially with her constant motion. We also mentioned to the doctor that Olive was having difficulty with constipation, and the doctor said yes of course because whole milk is really constipating. As are some of the other high calorie options we use frequently like bananas and carrots. This was all news to us. Another problem that didn't surface until we were at home fending for ourselves. She also pointed out that most girls potty train between two and two and a half years old. As in, hey guys you need to get going, which she said won't be possible with a constipated kiddo. It is always something I tell you.

Making cupcakes with her cousin Eleanor.

I also did a little research (and by research I mean google) and learned that the recommended amount of milk for a kid Olive's age is more like 1-2 cups. She is easily getting this amount between what we put in her blends and what she will willingly drink orally on a daily basis. Dain and I both agreed that we just can't keep pushing the milk when what she needs is to learn to eat solid foods orally. At first, we felt like we were failing if we didn't make her drink a lot of milk every day, but we've adjusted our outlook and agree that this is going to happen for her, it's just a matter of time. Which is not to say it's easy, but it is certainly less stressful to not have to be charting every little milliliter of milk she drinks throughout the day.

The step back on the milk front obviously means that we have to tube more. We've gone back to tubing a full lunch but moved the timing around to make it more likely for her to want to eat orally. Our rough schedule is:

7:30: Tube 60 ml water
8:00-8:20: Tube 155 ml breakfast blend; Offer food orally
10:30: Offer Olive milk (3-4 ounces)
12:00: Tube 60 ml water
12:30: Tube 160 ml lunch while sitting at table working on oral eating too
2:30: Offer Olive bottle (2-4 ounces milk)
3:30: Tube 60 ml water as Olive naps
5:00: After nap offer milk or tube 60 ml snack (fruit or yogurt)
7:15: Sit down for dinner and offer food orally
8:30: Tube 120 ml dinner blend
11:00: Tube 60 ml dinner blend plus 45 ml water as Olive is sleeping

So this is still a lot of steps, and it may not be the best schedule for trying to stimulate hunger. Polly would probably say it is way too much tube feeding, but it's just a necessary evil at this point while Olive is improving her oral skills. And she has surprisingly been much more open to working on her oral eating with this plan. She has been doing a great job at lunch and dinner really trying to suck on food and chew it. Of course she still nearly always spits it out or pulls it out with her fingers, but her comfort level with things in her mouth is amazing compared to a few months ago. So we continue to creep along.

One new thing that we discovered is that Olive loves shaker cheese. She pours it onto her plate and then just absolutely laps it up with her fingers. It's not typically eaten by itself, but more power to her for finding something she likes and asks for and actually puts in her mouth. She has also been really into mini-m&ms and string cheese and my nemesis, the Pepperidge Farm goldfish. And of course goat cheese. She is biting her spoon and taking big bites of goat cheese for us at dinner, which is a skill Polly was trying to get her to model at feeding school. So overall she is really improving, albeit at a snail's pace to the average person thinking about "eating" in terms of actually consuming food and fueling your body that way.

I would be remiss in forgetting to mention that the real impetus for taking a step back on Olive's milk consumption is that she got sick after Thanksgiving, as tends to happen after family gatherings. It was honestly just your run of the mill cold and possible ear infection but for Olive this caused random coughing fits when she reclined that led to vomiting. As in, vomiting in her carseat and vomiting while leaning back on the couch and vomiting during her nap while sleeping. So that was not fun. Yet barring a runny nose, she was otherwise fine with no fever. We thought she had an ear infection when this went on for a few days as the only symptom she had the one time she's had a diagnosed ear infection is the vomiting while sleeping.

We made the (rookie) mistake of taking her to urgent care on last Monday night to have her ears looked at. It was a debacle of expensive proportions. The urgent care doctor didn't think she had an ear infection (after a nurse had to clean the wax out of one ear,) but she was very concerned with the coughing/vomiting symptom. When I asked if it could just be a cold, she was very non-committal and started talking about a possible obstruction and maybe a g-tube complication. We had no idea what she was suggesting and she couldn't really elaborate, but after a long wait while she spoke to the pediatrician on call (not Olive's regular doctor) she informed us that we needed to go to the Children's emergency room immediately. We were shocked by that directive. It really escalated quickly from just wanting to see if our child had an ear infection to everybody panicking. And I get it. The girl has an extensive medical history for a (nearly) three-year old, and nobody wants to be the one who missed something. But on another level I know her better than anyone else, and I didn't think there was anything more serious than a cold and/or ear infection going on. Vomiting is just kind of her modus operandi.

In all honesty, neither of us thought there was anything wrong with Olive that warranted that trip, but we were backed into a corner. She'd already called them to say we were coming. She told us her and the pediatrician on call both thought it was necessary as well as the doctor she spoke to at Children's. We discussed just not going, but then I started to think that if something was really wrong with her, we'd be in trouble for not following the medical advice or that maybe we really were missing something. So we begrudgingly headed over to Children's. I think I laughed when the urgent care doctor asked if we needed directions. Totally inappropriate, but I was exhausted and liken that question to asking if I need directions to Target.

We arrived at Children's around 9 p.m., and it was standing room only folks.  And let me be straight up with the fact that an emergency room in the middle of cold and flu and rsv season is one of my worst nightmares. There were sick kids everywhere, and all I could focus on was the cacophony of sneezes and coughs, the piercing wails and my urge to put on a mask and douse myself, Dain and Olive in bleach. If we weren't sick when we walked in, we sure as shit were going to be when we walked out. I actually totally function as a normal person, but these are the thoughts that raced through my head as I was sanitizing my hands just walking in the door and clutching Olive a little closer. Thankfully we were triaged quickly, but our hearts sank when we heard that there was a 2-3 hour wait.

We trudged to the very end of a long hallway far past the people sitting in extra chairs that were being brought in to hold the hordes of people. We stood there for a moment, and Dain asked me if we were literally going to stand there for a few hours holding our bags and Olive. He didn't appreciate my answer. As luck would have it, a few chairs opened up and I made Dain grab them, walk them down the hallway, and Clorox wipe the heck out of them before we settled in for the next few hours. Olive was amazingly entertained walking up and down the halls, each of us taking turns with her. She marveled at the vending machines and the art on the walls and on the floor. She charmed the security guard at the front desk who gave her a sticker and a nurse who brought her out a tiara, a wand, and a bracelet.

It was incredibly surreal to be walking those deserted halls next to Olive. The same halls that I walked every day and night while she was hospitalized. Back then I couldn't even look to the next day let alone imagine a day where I'd be literally chasing after her. This was all lost on Olive of course. She was having a time of it. But the moment wasn't lost on me. And in many ways looking to the past is what grounds us. Knowing that we have come so far makes it ok that we have a little farther to go with this whole eating business. Because Olive is truly kicking ass and taking names in the grand scheme of her life. She's happy. She's healthy. She's developmentally normal. All of her major medical issues resolved. She just doesn't eat.

We eventually saw the doctor around eleven. She said Olive most likely had a viral infection like a cold and possibly an ear infection. She thought one ear looked red and gave a prescription for antibiotics to wait to fill if it didn't get better in 48 hours. She told us she could do a chest x-ray if we wanted. We declined, and we never did fill that prescription. The nurse also mentioned that whole milk is hard on the digestive system with vomiting and that we may want to switch to clear liquids while she recovered. We got home a little after midnight with a little lesson under our belts. We will always have to go to the Children's emergency room even for the most routine after hours medical care for our child, and our sweet child will throw up probably anytime she has a cough. Her system is just that sensitive. An exhausting and expensive lesson for our Monday night.

Olive was no worse for the wear though, sleeping until ten the next day. Thankfully she has the luxury of having her mother feed her while she's sleeping so we didn't throw off our routine. She was her joyful and busy self. Unfortunately Dain and I were not so lucky and we both ended up with the cold that seemed to hit both of us much harder than it did her (granted without the vomiting part.) But we are all ok. We still managed to find the time to fit in a lot of holiday fun between Thanksgiving and now. We cut down a Christmas tree, went on the Holly Trolley with Santa, decorated our house and tree, and made a gingerbread house complete with fairy folk. And we've listened to way too many Christmas carols for the likes of one guy.  It has been a good December so far.

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.

Day Nine

Olive first thing in the morning. A sleepy monkey.

9 days down. 1 to go. It’s odd to be this close to the end. There was so much lead up to this event, and now we are getting ready to say goodbye. It’s both daunting and exhilarating to be going home. We will of course be on our own without the direction of a seasoned professional deciding the minutiae of Olive’s tube feeding, oral eating, and hydration. That scares me. It’s an inexact science to begin with, but there will be a learning curve for sure. Thankfully Polly will be available to us by phone and email to help us with the next steps, and Olive will be followed closely by her primary care provider. We also have the great resource of a local dietician and our local feeding therapist. So we are not alone. It just feels like it sometimes. Especially at 11 o’clock at night when we blearily look at each other with blank stares after adding up Olive’s calories for the day deciding whether or not we need to add anything else through her tube. Thankfully we are in it together.

Queen of the dollhouse.

Last night after decompressing a little bit we walked to the nearby gas station. Olive is big on picking out treats, and we let her to try to normalize the activity of eating as most kids want to get something to eat when they see a row full of candy. She picked cotton candy, proclaiming “oh cotton candy from the baseball game.” Because one time this summer we went to a Twins’ game and had cotton candy. So that’s what she picked. Good old pre-fab gas station cotton candy. We didn’t really think she would eat it, but she surprised us by wanting to try it immediately. And to our astonishment, she ate some of it. She took very small pieces, but she actually let it melt all the way in her mouth. It was great to see her finally put something in her mouth that didn’t come back out. I’m not sure if cotton candy really counts as “food” per se, but Polly was excited about it when we told her this morning because she says that is a great gateway to other items that melt in your mouth but take longer to dissolve like Cheeto puffs for example. Because meltable foods are the stepping stone to other foods. Polly in fact gave us a sheet with a hierarchy of oral competence, and it is amazing how many steps there are to becoming an eater. Of course most children develop these normally without their parents recording the moment they can do things like "allow soft food to touch teeth surfaces," but it’s nice to see that Olive is moving up in her skills.

Olive's fortune. Let us hope.

Before dinner last night, Olive drank another nine ounces from her milk bottle, even after we had tubed two ounces of her regular lunch and two ounces of water in the early evening not wanting her to feel like she was starving as she did on Tuesday night. We had Chinese delivered to our room, and Olive did a good job tasting each of our meals. She also really enjoyed dipping a piece of a wonton in soy sauce and tasting that. She also bit on Cheetos. She took so much milk that we did about half of her dinner blend through her tube before bed and the other half while she was sleeping. We want to get those calories in while still allowing for hunger so Polly feels dinner is where we shouldn’t hesitate to still tube a full amount if not more as it will definitely empty from her tummy by morning. 

Family time. No shortage of that these past few weeks.

It was pretty clear today that Olive has had enough of feeding school. She was defiant for breakfast refusing most everything except for milk. The only thing she did taste was a few pieces of cereal that she then spit out. And Polly had to throw it down that we were going to have leave to get her to take three bites of sausage. So that was not fun. She’s been away from home for a long time now, and the girl is just exhausted. She did, however, perk up for preschool. Olive chose a puzzle for the first activity, and then Crystal had a great activity planned where Olive got to scoop out a pumpkin and then paint it. She loved it. Although she very gingerly picked out one pumpkin seed a time, wiping her hands often. She’s not a fan of stuff on her hands, but she loved painting. After that they read a book and then Olive got a lot of time to play with the kitchen, which is hands down her favorite thing to do in that room. Crystal even wowed her with a new bin full of food. Olive pulled out a whole fish. She was totally fascinated, sitting down to inspect it for a minute before declaring that he was “kinda creepy.” A funny observation from her, although I totally agree with the assessment that it would be creepy to eat that whole fish like that. 

This guy IS "kinda creepy."

After preschool she had time to play with Patty in the play area. She is now obsessed with the little people dollhouse. Loves it. She puts the people to bed and sits them at the table and drives them in their car and narrates their every motion up and down the staircase. It’s never ending imaginary play for her. There are always lots of other kinds around, which is great for her to get to interact with kids of all ages as she has done much less of that than her peers. She’s really open to most kids, but she seriously dislikes babies. If she so much as sees a stroller, she says “this baby go home.” So imagine her dismay when a baby crawled up to her dollhouse table and pulled himself up and stared at her. She didn’t know what to do with herself. She froze with a look of panic before telling him to go home. Lucky for her a fire truck came by outside, and she ran to the window distracting her from that predicament. We’re pretty sure it would ruin her life to have a sibling.

Biting Goldfish.

Next up was snack. It went better than breakfast but not her greatest effort. Polly wowed her with a plate of goldfish, both regular and the s’mores variety. Olive is very familiar with goldfish so she readily tasted them. She even bit into a few at Polly’s direction, and let Polly place two on her back molars for biting. She also enjoyed dipping the chocolate ones in chocolate sauce and licking some of it off. She also drank her milk with the straw with a large dose of encouragement. She was well behaved enough to let us have a conversation with Polly about where to go from her. Polly will give us an official discharge report though outlining our next steps in helping this girl become an eater. 

Olive's spider. This guy is legit.

After snack came our session with Ms. Jen. Olive was ecstatic to start with the little ride on car again announcing that Dain needed to go hide (as he did a few days ago.) She had a time of it having us hide and hiding herself in the hallways. It’s a great activity to get out her nervous energy. After Jen pried her away from that fun, they sat down to make a Halloween craft. It was a construction paper spider with googly eyes. Olive killed it. I’ll let the masterpiece speak for itself. Olive didn’t want long legs like the example spider had. She wanted short ones. And lots of eyes. Next up they played with busy bugs. Jen had Olive match the bugs by color to pictures on paper cards. The hard part was trying to use tongs to move the bugs. Olive is so close to getting it down, but we'll have to keep working on it despite the debatability as to whether tong use is in fact a necessary life skill. We ended with Mr. Potato Head. Such a classic toy. Yet it was Olive's first encounter with him. It was great because Jen just set out all the parts and the body. There was no example for what it should look like. Hilarity ensued. Olive insisted on putting the shoes where the hat should go, the eyes in an earhole and other random face parts scattered haphazardly. It was fun to see what a kid does with it when they don't know what they are supposed to do with it. 

Obviously the shoes go on top.

Following occupational therapy, we did lunch on our own deciding to give Olive a break. We went to a local burger bar. Olive was downright squirrelly from exhaustion so it was mostly Dain and I shoving food in our mouths as fast as we could as Olive flopped around on the booth. Olive did taste some pretzels and a tiny bit of hummus. And she took four ounces of milk. We ordered her a grilled cheese that she took three tastes of. It doesn't really make sense to order a non-eating child a whole meal, but it honestly just makes me feel better as a mom to do so. Like if we all pretend we are "normal" then one day we will be. Mostly it's a waste of money, but I want Olive to understand the cultural importance of sharing a meal together and the joy of it in addition to accepting the absolute necessity of eating food to survive. Because a lot of our culture revolves around food. Some may say that it shouldn't, but some of my greatest memories involve food: the cookies my grandmother had waiting for us every time we visited Kansas City, breakfast on Christmas morning with my family as my brother's kids run around the table in anticipation of gift opening, grilling at sunset on the beach with my best friends in Florida, the amazing spread my dad puts together for Thanksgiving, the creme brûlée my mom and I ate in our hotel bed in London on one of our fabulous adventures, and the unbelievable chocolate chip/butterscotch/toffee ooey gooey cookies that my dad would bake in batches of 144 and my mom would deliver to us in the NICU for ourselves, the Ronald McDonald House and the staff, bringing a little light to an otherwise dark place. I could go on.  I want so badly for Olive to have those experiences. And I think she will in time.

Grilled cheese for one.

Olive took a much needed nap in the day suite after lunch, and she woke up with new energy asking to play with Ms. Patty. We did that for a few minutes before our last snack of the day with Polly. We had to pull her away from the dollhouse as she always asks to at least take some of the people with her. No dice little lady but props for your persistence in trying to take them every time. There is also a toy egg that Olive tries to sneak from Polly's kitchen. As if we won't notice her walking down the hall with it. For snack Olive took very little once again, but she did drink her milk. She took a few licks of goat cheese and mostly just played with some Cheeto puffs. It's hard to watch her fight it so hard. I don't know how it will go with us at the helm all day everyday, but all I can hope is that she continues to improve.

After feeding school we rolled out and decided to reward Olive with a visit to a local toy store called Shenanigans. It was great fun. Olive played with the train table, rode on every toy available, and pushed a little shopping cart around in hopes that we would walk out with all the items she threw in there. She settled on a boat set, which is very fitting since the girl sings "Row, Row, Row Your Boat" all day long. Then we treated ourselves with a stop at the Sweet Haus for cupcakes before heading back to the hotel. After tubing about half of Olive's lunch blend to make up for her lack of oral consumption of anything other than milk, we went to the park for a bit and grabbed sandwiches to bring back to the hotel. Now we are left to pack our stuff as we have to check out tomorrow morning, go to the whole day of feeding school, go trick or treating on the Lawn at UVA and then drive to Richmond for one night at the airport hotel before we fly out early Saturday morning. There is never a shortage of things to do. Here's to hoping the return trip goes as well as the trip out here.

She's packing herself. Clearly it's time to go home.

Day Eight

Outside the UVA Battle Building.

Wow. We are worn out and ready to be home. Tonight is our twelfth night in a hotel. Thankfully the end is in sight with only three more sleeps until home. Today was a good day on the eating front, but I for one just hit a slump today. The build up of exhaustion and stress is dragging me down. Plus my daughter informed Polly this afternoon that she was busting her balls. Apparently I need to censor myself more as Olive has reached the language threshold where she can hear something once and tuck it away inside her little head waiting to repeat it and mortify her mother. The only redeeming aspect is that Polly didn't understand exactly what she had said. I certainly didn't clarify, and they moved on. So that.

Speaking of that troublemaker, she had a good morning. She didn't get nervous or throw up when we got there. I admit that I have been sitting next to her in the back of the car in a so far successful attempt to mitigate the odds that she will get anxious about our arrival. If only I could clone myself and do that at home to prevent her vomiting when we arrive at places like her Tumbletots class or school. But hopefully she grows out of that soon.

A firetruck sighting is a good start to any day.

She is already much braver than she was when we got here. She is now willing to be weighed without throwing a fit, which is a big step for her. Breakfast went well with Polly. Olive drank her milk, and she took a few bites of whipped cream cheese off of a spoon. She also was willing to try sausage, and she practiced biting pieces and spitting them out. And she thoroughly licked a piece of bacon. Polly also presented her with a mini muffin. She mentioned school and a boy from her class when she saw it because she had that for snack at school the week before we left. She has an incredible memory. She very bravely took two bites of the muffin, but then spit them out too afraid to try to chew it. It doesn't sound like much, but she had a positive attitude about breakfast so that was a nice way to start the morning.

This muffin is terrifying.

The dietitian, Sarah, sat in on breakfast to discuss our nutritional plan, and then I sat with her for a little while after in the lobby while Dain took Olive to play. Sarah admitted that it's a tricky spot to be in since Olive has been getting such an amazingly nutritious diet through her tube. She wants to help us facilitate hunger without taking away all the great nutrients. We talked about some different options, and she is going to write up a plan for us to switch a few things around in our blend to hopefully still provide nutrients while cutting calories so she can work on taking them orally. For example, we are cutting out her high calorie yogurt/peanut butter snack all together as that can be replaced with her milk intake. We are also going to cut the oil in our blends in half to take out fat calories. We will still give her a full dinner blend with about half of breakfast and half of lunch. And we will add a multivitamin to cover our bases on micronutrients. This will of course need to be tweaked regularly depending on her weight checks and her oral intake. Unfortunately today her weight was down. It was 10.45 kilos. Her previous weight checks were 10.4, 10.55 and 10.65. We have an appointment scheduled with her pediatrician for early next week to get a baseline weight at home.

Washing dishes.

After a few minutes of play time with Patty in the play area we headed to preschool with Crystal. The first thing Crystal had was a tractor book that actually had wheels and could roll around. Of course Olive loved it. They read it, and she played with it for awhile pushing it around and regaling Crystal with tales of her tractor rides. "Obbie go on a tractor ride." "Farmer drive." "Mommy sit by you." "My daddy go on a tractor." After that fun we looked at the globe since Olive had asked about it yesterday. It was a little advanced for a two year old, but we showed her where we live and where we are. Later in the day she belted out "up here in Minnesota!" so she was obviously paying attention. Then we all painted with water colors, with Dain showing up the ladies of the family. The painting ended in a power struggle because Olive wanted to be in charge of the paint and the water, and Crystal told her no. Typical two year old stuff. She recovered by moving on to the puzzle from yesterday that she had liked. She did that for awhile, and then we ended with time to play in the kitchen.

Putting on the Ritz.

Then we headed for snack with Polly. Olive was excited to see pretzels. She mostly likes to lick the salt off, but she took a few bites, spitting out the pieces. Then she dipped some in hummus and took small licks of that. Her favorite was the goat cheese that she took a few big licks of. Polly continues to try to get her to close her mouth around a spoon to get all the food off. That's really hard for her, but she's trying. She also took some nice small bites of Ritz crackers and then worked on keeping the crumbs in her mouth to work them down. She probably ate 1/4 of a cracker with a lot of encouragement so that's nice to see her putting the skills together of biting, chewing and swallowing even if it is very much a struggle at this point.

The Olive taco.

Polly also started to try to do some language testing, but Olive was totally messing with her. She pretended not to know words that she clearly does know. She was amused with herself and totally doing it on purpose. It took Polly all day to get it done and even then she just stopped when Olive hit two years and six months on the test because it was such a struggle to get her to participate. She would look at a house and say it was a dog. Or just pretend she couldn't hear Polly.

Lounging in the rice and beans.

We had a short break in the play area before Olive's favorite session with the occupational therapist Jen. First they did swings. Jen introduced a new one she calls the "taco swing." Olive loved it. They also tried another hammock swing that she was equally amused by. Then they worked on blowing cotton balls with straws to improve oral skills. After that, they made a construction paper pumpkin, and then they had a car wash, hitting on Olive's love of both cars and water. The soap was shaving cream, and they would rinse and dry. By Olive's special request they also played with the rice and beans bin at the end. Olive decided that it wasn't enough to bury her hands or the cars. She wanted to bury her entire self. She hopped right in and asked Jen to do that saying "bye-bye Obbie." Disappointingly for her, there was not enough beans or rice to cover her tiny bod.

Next we walked to grab lunch for ourselves before heading back to the kitchen for lunch with Polly. For lunch Polly presented Olive with cheese slices and tiny cookie cutters. They cut animal shapes in the cheese, and Polly encouraged Olive to try to take little bites and then keep chewing. The girl just hasn't grasped chewing yet. She will do one or two chews and then she spits out the pieces, not understanding that she needs to keep chewing and then swallow. Olive took a few good bites of spaghetti sauce (letting the noodles slide out of her mouth of course.) She was very reluctant to try the meatballs. She took a tiny lick but was unwilling to take a bite. She also drank her milk, but in case I haven't been clear about this, it is work for the adults involved to get her to drink the milk from her straw cup. It is a lot of saying ok let's take three more drinks and then we can see this, with cars and books and various things being the impetus for her to take those drinks. It's utterly exhausting in my opinion, and I really don't know how I'm going to do it by myself the four times that I will have to every day while Dain is at work. It's an untenable proposition really, and we are going to have to figure out a realistic plan for coming home. Olive is really all that I do. And that was ok in the beginning because she was so fragile and needed so much, but as she gets older we really need to find ways to balance our lives more.

Cheese party.

Following snack, we headed to the day suite for an outfit change for Olive who just gets absolutely covered in food at every session. At the end of today she looked like a human Cheeto. Her clothes have been destroyed on this trip. Olive took another three ounces of milk from her bottle before taking a short nap. After she woke up, we had a few minutes to play with Ms. Patty, who helped her make a skeleton art project. Then we had our last snack with Polly. This one was the worst of the day. She played with cheese mostly taking just a few licks. She didn't touch her creamy items, opting instead to suck on Cheeto puffs. She did get some crumbs of that though and was able to swallow them down with milk. She was clearly just tired. She was mostly playing with the cheetos by the end, delighting in breaking them up into crumbs. It was a battle to get her to drink her milk from the straw too. Polly enticed her with a truck puzzle book though, and we powered through. But I think we all walked out of there a little dejected.

Receptive language testing.

It's hard to hear that you just have to wait for her to get older to grasp these concepts. Polly said that Olive tests normal cognitively and for language but that maybe she is just emotionally behind her peers because she seems to have less of an understanding of contingencies than other kids her age. She said she may be more like a 24 month old in terms of her behavior based on her prematurity. I don't really know if I agree with this or what the point is of defining exactly what month she is developmentally in different areas. Olive moves at her own pace. We've accepted it. The girl didn't roll over until she was a year old. Three months later she started walking. We don't expect her to be exactly like her peers much like I wouldn't expect a full term baby to be exactly like his or her peers. Every child is different, and your expectations of who your child should be can really get in the way of the awesome person that your child already is today. Olive is really good at doing Olive. Even if it does bust my balls.