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.

Baby Juniper

On August 27 we welcomed our beautiful daughter and Olive's little sister, Juniper, into the world. Born at 37 weeks + 4 days, she came into the bright lights as a big, healthy term baby. Her birth and start to life was a stark contrast to Olive's decidedly difficult beginning making it an emotional few weeks. While Juniper's birth was incredibly healing and cathartic, it was hard not to look at it through the prism of what Olive's birth was not. We heard Juniper cry. She could breathe. She stayed in the room with me. Dain announced her gender. We held her. She could eat. And three days later we brought her home with us. Our take home baby. By some stroke of magic, we got all of the moments that we missed out on the first time around. And I think we both knew in seeing our chubby, screaming baby that this is it. Our family is complete.

I had hoped to attempt a VBAC this time around, but I also had a feeling that it wasn't in the cards for me. That feeling was right. I took low dose aspirin throughout my pregnancy in an attempt to prevent preeclampsia this time around. I stopped taking it on a Saturday (at 36+6) and by Wednesday I was in the maternal assessment center for high blood pressure. I am convinced that there is a correlation between these events, but aspirin needs to be stopped around this time in pregnancy to prevent interference with your body's blood clotting ability for delivery. I took my blood pressure obsessively throughout the summer, and I quickly noticed on August 26 that it had jumped overnight to around 165/90. I drove myself to the hospital as Dain scrambled to prepare Olive for what would likely be a few days without us. Once there my blood pressure was initially high but then went down some. They decided to wait four hours and check it and send me home if it was less than 140/90. At 11 p.m. the nurse took my blood pressure, and it was 140/85. We had been planning to head home, but this reading coupled with the baby's gestational age put us within the recommendation to move towards delivery right away. Since induction was not an option for a VBAC, we prepared for a repeat c-section.

I was nervous. My only other birth experience was obviously traumatic and terrifying. It was not something I wanted to experience again. Thankfully we had an amazing care team. They listened to everything I said about my previous c-section, and they really set out to make it a better experience for all of us. Since I hadn't been prepared to have surgery that night, we needed to wait until 8 hours after I last ate so we didn't head to the operating room until 12:45. But it was different this time. I walked down the hallway into the operating room instead of being wheeled in the bed that I'd been in for five days. It was still bright and cold as it had been with Olive, but the room was full of nervous excitement instead of fear. There wasn't an undertone of the unknown. Everyone was excited for us that we were going to be surprised by the sex of our baby. This was truly a routine c-section and not any sort of emergency. The nurses were fabulous and friendly, and I knew what was going on the entire time.

Unlike the first time, my anesthesia worked as did the anti-nausea medication I was given. I didn't feel any pain. It was surreal. I don't know that I have ever been more present in any moment of my life. There was nothing else. Just the sights and sounds of the operating room awaiting Juniper's arrival. It was incredibly calm. A very different scene than Olive's hurried arrival. Dain held my hand and our camera for the big moment, and at 1:14 a.m. the doctor told us that the baby was coming out. Dain snapped a quick photo and then announced that "it's a girl" with just a little bit of hesitation as the doctors and nurses nodded in agreement. And then she screamed. The most beautiful scream. There was a flurry of commentary about how big she was and how beautiful she was. I think the term "thunder thighs" may have been thrown around by someone, which was music to my ears. My chunky monkey. The first moments after Juniper's birth were absolutely euphoric as I watched her be weighed and wrapped in a blanket. Then Dain brought her to me for my first snuggle. It was everything we wanted.

Juniper's birth was unbelievably perfect. You don't get many moments like that in life, and I wish I could bottle it up for the days when motherhood is tough. Because it wasn't all unicorns and rainbows after we headed to the recovery area. She was large for gestational age, which meant she needed to be closely watched for hypoglycemia. After she nursed for the first time, they started taking her blood sugar readings every few hours, which meant having her heel pricked over and over for a blood sample. It was fine at first, but by about eight hours after her birth her readings were low. And at this point, we were exhausted having not slept in almost two days. The nurses wheeled in a breast pump and brought in formula and that began the downward spiral. We must be on a list somewhere of uncooperative parents, but the nurses were not grasping exactly how much of a big issue feeding is to us. Having one child that literally couldn't eat at birth and then didn't eat for awhile and still doesn't eat enough to sustain herself makes it an emotionally charged issue to say the least.  It was high stress fueled by emotional fatigue and sheer exhaustion, and it was only amplified when Juniper was transferred to the special care nursery late in the day on her birthday.

She needed an i.v. for glucose, which is not something that could be done in the regular mother baby center. So once again my newborn baby was taken away from me. The circumstances were obviously different as I held her in my arms as Dain wheeled us down two floors and the nurse pushed her bassinet. But it brought back all the memories as she was hooked up to the same monitors that Olive was on. The sounds were eerily familiar to us as we watched them struggle to place an i.v. line in our little girl. They tried both of her hands to no avail and ended up having to put it in her head.

Meanwhile I was still a patient upstairs having to go back and forth for my vital checks and medicine and to try to sleep, which was impossible for more than thirty minutes every three hours or so. It made breastfeeding pretty tough since we weren't staying in the same room, but not trying my damnedest wasn't an option. I ended up seeing four lactation consultants the first eight days of Juniper's life, two of which were in the hospital. And we fended off all of the attempts to bottle feed her formula because breastfeeding was my number priority this time around mostly because there is no way I could pump again like I did for Olive.  It was pretty surprising how much we had to fight for it. Thankfully we know a lot about different ways babies eat, and we settled on finger feeding her by syringe the small amount of pumped milk and formula she received in addition to nursing. It all worked out in the end. By Sunday when I was being discharged, her blood sugar levels were high enough that they felt comfortable discharging her too, which was a total surprise to us. Early that morning we had been preparing for our first night after my discharge to be spent in a family room in the hospital to be close to her as it didn't look like she would be ready to come home. But she turned it around just in time.

Despite the fact that I had hardly slept in five days, it was an incredible feeling to walk out of the hospital for the first time with our baby. And to know that big sister Olive was anxiously awaiting our arrival at home. Our first night at home was pretty rough. Juniper would only sleep being held, we had to wake her up for her to eat, and I was still struggling to get the hang of breastfeeding. Dain also found Olive in our kitchen at two in the morning looking out the window for my mom's car saying, "Gigi, where are you?" as Gigi had been her playmate and roommate while we were in the hospital. My heart was officially broken for our sweet three year old whose life was being turned upside down. And then it somehow managed to get worse.

I felt off the next morning, and I honestly would have discounted it as a result of being tired and having just had a baby except that postpartum preeclampsia is something I am obviously hyperaware of. I took my blood pressure. It was high. I called the doctor. She said come in. So we packed up both girls and all of our stuff once again and headed back to the hospital. I was admitted for postpartum preeclampsia and a mild case of HELPP syndrome as my liver enzymes were elevated as well. I obviously caught it incredibly early so it was easily treated with magnesium sulfate and blood pressure medication, but it made it terrifyingly evident to me how fast postpartum preeclampsia can strike and how serious it can get before people realize it. I was in the hospital for about 36 hours longer and was discharged on blood pressure medication. I'm lucky. I faced preeclampsia again. I walked away from it again with my own health and a healthy baby. And I am never going to have it again. 

The first ten days of Juniper's life were tough. Not as tough as our first go but tough nonetheless. Pregnancy and birth and preeclampsia take their toll physically, mentally and especially emotionally. As does introducing a new family member. It has been a difficult transition for Olive. She went from having all of the attention to having to take a back burner at times to somebody else's needs. She has acted out. She's been sad and angry and frustrated. And I don't blame her one bit. I have a lot of mom guilt for the things that I can't give Olive right now. Many days I feel like I'm failing her since I don't have the time to sit down and work on her oral eating with her as much as I should or take her to the park or read a book right when she asks. But I tell myself everyday that it gets better. I know it does, and I know it will. 

We are extremely blessed to have these two ladies and all the people in our lives who have helped us during the past few months. We are incredibly grateful for all of the cards and gifts and meals and well wishes that we have received from our family, friends, and neighbors. Life has been busy and hectic juggling two, especially with some ill-timed business travel that Dain has had, but once I get into a better rhythm I hope to update our blog with posts about all of Olive's progress eating one year out from the trip that started this endeavor.

Camping with a Tubie

Making Olive's breakfast at the campsite. She did most of the work.

It's hard to say what possessed us to make camping reservations for Memorial Day weekend, but back in December while hunkered down on our couch amidst a cold, Minnesota winter, we did just that. This was of course before we knew I was pregnant. I don't think I would have signed up for a camping excursion had I known, but since we had already made the plans, we decided to stick with them. Camping and spending time outdoors is something that Dain and I did quite often before Olive entered the scene, but the last time we went camping (for just one night in Mount Rainier National Park) was coincidentally when I was pregnant with Olive. Camping with a tube-fed kid possesses some unique problems as we obviously need to travel with her food and all of her supplies and be able to do dishes, but we decided that we can't let Olive's tube feeding hold us back at all. You only live once, right?

Carting everything and a hitchhiker back to the car.

We reserved a cart-in campsite in Lake Itasca State Park for two nights over the holiday weekend. That seems like a really short trip. Yet, it is amazing how much preparation can go in to just two nights of camping. We surely underestimated the sheer amount of work it would be to prep for our brief trip. Thankfully we mostly had the items we needed except for a large water container. We just needed to sort through all of our camping gear that had been sitting dormant in our basement for years and figure out exactly what we needed to bring as far as supplies and food and just in case items. For Olive's birthday, we gave her a sleeping bag so she was all set on that front. The most important preparation, that I would suggest for all kids the first time they sleep in a tent, is that Dain and Olive did a dry run in our backyard the weekend before we planned to venture off the homestead. Mostly to ensure that she didn't freak the freak out in the middle of the night. Surprisingly, she did great. Of course she went to bed late and woke up super early, but that's to be expected when you are on the sun's time. She was exceptionally excited to wake up in a tent.

Backyard camping at its finest.

With one night under our belts, we decided to go forward with our plan to cram our car full of stuff, drive three and a half hours north, and live it up in the great outdoors. We have a Subaru Outback, and I will say that it does not seem very big with three people and a whole bunch of stuff. A car top carrier is definitely in our future with another one on the way. Since we were basically car camping, we really just brought everything we ever thought we could possibly need. And then a few more things. We each had our own bag with clothes. Then we had a big duffel with our tent, tarps, sleeping bags, etc... We had some miscellaneous items like camp chairs plus two large plastic totes with kitchen supplies, fire supplies, dishes, etc.. Then we had a variety of bags. One with towels. One with blankets and pillows. One with sleeping pads. Plus Olive's backpacks (one with daily supplies and one with her comfort items for the tent plus a few books.) And we had a medium sized plastic tote with all of Olive's food and feeding supplies, bottled water, wipes, and hand sanitizer. The last items into the car were a medium sized hard cooler and a soft-sided small cooler bag packed with milk and Olive's lunch and snack. Just a few things.

Olive downing a milk box like a big girl. No more baby bottles.

On Saturday morning we made all of Olive's food for that day and pre-loaded syringes so that all we would have to do is grab them out of the cooler. It made it a lot easier while traveling and setting up our campsite. We then decided that we would bring all shelf-stable foods for the following days so that we didn't need electricity or ice. For breakfast, we packed fruit and yogurt pouches (Earth's Best and Happy Baby/Tot are our favorite) along with pre-ground Grape Nuts to make a breakfast blend and milk boxes, which are one of the most convenient things ever for us. Olive loves to drink milk too so we always need it with us. Thankfully Organic Valley makes single-serve shelf-stable boxes of whole milk. It means we don't need a cooler with us. It's nice to have one to put the leftovers in but not an absolute necessity. We packed plenty of snacks for Olive too as she loves to eat mini m&ms, goldfish crackers and mini Nilla wafers. And for tube snacks, we bring Happy Tot greek yogurt pouches as they are high-calorie and easy to tube on the go since our o-ring syringes fit right in the top making it simple to load them.

Olive's dinner al fresco.

In addition, for lunch and dinner we packed Real Food Blends for Olive. These have been life changing for us since they make it possible to provide Olive with a tube diet of real food without the hassle of having to bring our blender and all of our ingredients with us when it's not convenient....like when camping or staying in a hotel. They make three varieties with just a handful of healthy ingredients, and they don't require any refrigeration until after they are open (if you need to save leftovers.) So while we did purchase ice from the park office to keep our leftovers cold to reuse the next day, we didn't absolutely need to for our camping trip, which was nice to know. For tube fed kids on feeding pumps, electricity would obviously be a must, but at least in Minnesota, most state park offer electric sites. For us, with a tube-fed kid that doesn't use a feeding pump, it was completely doable to be without refrigeration or electricity for a few days. We also typically tube one syringe of food after Olive goes to sleep to get in extra calories, but we decided to forego that while camping, especially in light of the fact that she occasionally throws up when she coughs and she had a slight cold over the weekend.

The lovely dishwashing station.

The hardest part was doing dishes. We do so many dishes every day, and it's not exactly optional. Olive's feeding supplies (syringes and extension tubes) are expensive and in the case of the syringes that make tubing a blenderized diet easier, increasingly hard to find. So we use them as long as we can and prolong their lifespan by meticulously washing everything after we use it. To make this possible while camping, we purchased three dishpans. We kept our used feeding supplies in a plastic bag in the cooler throughout the day, and then tackled them all together after dinner. It helped to sort of pre-rinse each syringe and tube after we used it throughout the day by shooting water through the tubes and sucking in and squirting water out the syringes a few times. That way, there wasn't a ton of residue sitting in there all day.

Soaking dishes at the campsite.

To do dishes, we heated water on our camp stove and filled the first tub with warm, soapy water to let everything soak in. The second tub had clean, cold water from the campground. The third we filled with boiling hot water after heating more water on our stove, in order to sanitize the dishes after rinsing them in the second tub of rinse water. Then we placed them in a container lined with paper towels to dry in our car overnight. It was a meticulous three step process, but it worked really well. The campground had potable water from a spigot that we used for dishes and our hot chocolate/coffee in the morning, but for Olive's tube water and our own drinking water we simply packed a case of bottled water in the car. And in full disclosure, Lake Itasca is a pretty swank state park. It has a lodge. With a dining room. That serves beer and wine. And we totally did that two nights in a row for dinner.

The burner.

For our first camping outing with Olive we just thought it would be too much to try and plan camp meals to cook. We brought snacks for ourselves and a few containers of yogurt in our cooler for breakfast. And we obviously made s'mores over the campfire. Olive is an exceptional marshmallow burner, but don't worry, we were close by to put out all the fires. And then she'd ask for another one. Definitely more of an activity for her, but we wanted her to get the full experience. Because what is camping without s'mores?

Olive kept her toys in the "beer box." Almost as critical as the food.

The food and dishes situation worked out really well. It's not easy to stay clean while camping, and we are pretty strict about general hygiene when it comes to handling Olive's food and feeding. We carry hand sanitizer with us and had lots of wipes. That seemed to work well enough. The campground also had a shower building with warm running water so it was possible to get a little cleaner. I took one shower on the second day, but for Olive we just gave her a wipe bath and put on fresh clothes. She pretty much gets dirty the second you clean her anyway.

We obviously also travel with extra supplies and a small emergency kit with an extra g-tube, that would allow us to replace Olive's tummy tube in the event that her current one fell out or malfunctioned in any way, which I should point out has only happened three times in three years. But it sure catches you of guard when it does. I'm an over-packer to my core, as Dain will be happy to tell you about, and for me one of the most stressful parts of traveling with a tube-fed kid is my engrained fear that I will forget something. I always used to think to myself that everything is replaceable (while going over my packing list for the tenth time) so it would be ok if I left something home, but when you have medical supplies that you need, you can't just pop into the Walmart down the road and buy extension tubes. So it helps to be organized. I check and double check to always make sure we have the items that would be difficult to replace while traveling. We keep a bag with an extra syringe, extension tube, and pouch of food in our car. And Olive's day bag has her emergency tube kit.

Olive in the Mississippi River headwaters.

Other than medical supplies and tube-friendly food, we basically packed what everyone else would with a young child: pull-ups and wipes (yes, we are still trying to potty-train); extra ziplocs/plastic bags; way more outfit changes than you could ever imagine needing; a bin of outdoor toys (purchased from our favorite dollar section at Target mostly); sleep essentials (for us it's a growing hoard of blankets, stuffed animals, and a plastic bestie named Twilight Turtle); more wipes (because kids basically just roll around in the dirt); hand sanitizer; a kid-sized camp chair; beach towels; extra sleeping pads/pillows/blankets to make sleeping comfortable (especially for the pregnant lady); snacks; a clothesline to dry wet clothes; bug spray; and sunscreen. This list was helpful in preparing.

The coveted bucket swing.

The best part of our weekend is that I can truly say that Olive loved every minute of camping and spending time at Lake Itasca. On Saturday we spent time at the Mississippi Headwaters. The water was obviously cold so we just planned to wade in up to our ankles. Olive of course had different plans and took a little swim. She is an all in kind of girl. Through and through. On Sunday, we rented a pedal boat on the lake and then rented bikes to ride on the many miles of paved path in the park. One of us rode like a granny. One of us silently judged the pace. And the third fell asleep in her Burley trailer so it was a successful outing. Yet even with that excitement, we are pretty sure she could have stayed at our campsite all day. We were within eyesight of the playground, and the bucket swing is one of Olive's greatest love affairs. She could spend hours on it if anyone had the patience to push her for that long. We don't. We meanly draw the line around the twenty minute mark. Dain joked that we could have just spent the weekend at the park two blocks from our house on the bucket swing. Possibly true.

Serving drinks from the "beer box."

She also had an obsession with the "bear box" as we called it or the "beer box" as she called it. I told her a few times that this big, brown box was a "bear box" to keep bears and other animals out of our food. A few minutes later she yells, from within the box of course, "hey dad, do you want a beer?" Then we hear, "hey mom would you like a root beer? No. It's not your favorite." Seriously. The girl spent most of her time at the campsite inside the beer box, which at some point also morphed into the girls' bathroom in her imaginary world. If Dain tried to get in there, she would shriek that it was for girls, obviously not for daddies. I'm sure our neighbors loved us. Who wouldn't like to wake up to "Happy Birthday" being belted out at 6 am and the hysterical pleas of a three-year old who needs to change out of her pajamas within three seconds of waking up? We picked a cart-in site thinking it would be secluded, as our previous campsites have been in other state parks, but not at the Bear Paw Campground at Lake Itasca. Our campsite was about a hundred feet from our car and in clear view of many other sites. Not our favorite, but it all worked out.

Out on the lake in our rental "Dazzle."

The only thing I wish that we had is a family tent. We have an awesome backpacking tent. It's a 3-person tent, and it is lightweight, breathable, and roomy for two people and two backpacks. It's basically the perfect tent for a young couple. Add in a kid, however, and you seriously question your decision making skills in your former life. Obviously five years ago camping with children was not on our radar, but a monstrous family tent is pretty much where it's got to be at for family camping. Or a camper or R.V. if you're really fancy. Our 3 person tent worked out ok, but add in another child, and it won't be possible. We will have to upgrade to a "campground palace." A screen tent would also be nice. But for the whole 36 hours we spent on our camping adventure, we had plenty of stuff. I asked Dain his thoughts on the weekend and he replied that it was "worth it." I agree. It was worth it. Traveling with a tubie is intimidating and camping was no different, but we are glad we did it. It was memorable, and I would encourage any families out there with a tubie to not be afraid to try it.

Mississippi Headwaters.

We were originally going to stay for Saturday and Sunday night, but on Sunday night as we were heading to the lodge, we decided to pack up our campsite after dinner and head out that night instead of in the morning. The main reason is because heavy rain was imminent. And the thought of packing up soggy stuff in the morning in the rain wasn't that appealing. Plus, in total honesty, the combination of having not slept the night before and finding a tick on my thigh that Dain had to remove after Olive and I walked back from the bathroom with her screaming "Dad! Help! Mom has a bug on her!" at the top of her lungs was bringing me close to my tipping point. So at 7:30 at night, after an hour of speed packing and one last go on the bucket swing we hit the road. Thirty minutes in, the rain started. We didn't get home until almost midnight, but I was happy to carry a warm, sleeping bundle into her own bed and then crawl into mine. A perfect ending to our foray in the woods.

Nicer parents would have given into the repeated requests to take "a little swim in the lake."

Pregnancy after Preemie: A Sibling for Olive

After nearly three years, we made the decision to add to our family. I'm due in early September. When we first told Olive about it, she thought for a minute and said very confidently, "no, I just want mommy instead." That sums up her feelings on the matter. She doesn't want a baby brother or sister, and she certainly doesn't want to have to share her belongings let alone her mother. She is already trying to hoard her baby items that she insists the baby cannot use. She regularly begs us to get out her baby toys or bumbo or carseat so that she can put them in her room. It may be a rough transition for her, but having a sibling is character building right? We are confident that in the long run it will be great for her as we certainly can't let her go on believing she is the be all end all in this world.

Why did we decide to pursue a second pregnancy? Well, it wasn't simple. For most parents it probably isn't easy to decide if and when to try to add to your family. It's said that it's never really a good time to have a child, and I very much agree with that. There are so many things to ask yourself. Can we afford another child? Do we have room? Will our first do well with it? Is it possible to love a second child as much as we love the first? Can we deal with the sleep deprivation again? Am I ready to be pregnant again? And I think these are the kind of questions that everyone asks. On top of that, we needed to consider the implications of already having one child with special medical needs and the fact that we were signing up for a high risk pregnancy with the possibility of having it happen again. Needless to say, a lot of thought went into it. It probably falls onto the short list of "hardest decisions we've ever made."

She's way more excited about that swedish fish than being a sister.

After Olive's early birth, I was explicitly told not to get pregnant again for at least two years. Preeclampsia research has shown higher rates of reoccurrence for pregnancies less than two years or more than ten years after an initial pregnancy with preeclampsia. That was an easy directive to follow since having another child was the furthest thing from our minds in the midst of everything we went through with Olive those first two years. And honestly I didn't feel completely well again until near that two year mark. The pregnancy, preeclampsia, c-section and ensuing mental, physical and emotional exhaustion that comes with having a micro preemie really took a toll on my body and my mind. We agreed early on that we would meet with a perinatologist sometime after Olive turned two years old adjusted and take it from there. So last August we found ourselves sitting in a tiny room with the doctor who delivered Olive and nervously asking for his opinion on whether or not to pursue a second pregnancy.

I'm very much a believer in empirical evidence and scientific research so after months of obsessive reading I knew going in to it that we have a very strong chance of having preeclampsia reoccur. As someone with early onset severe preeclampsia in a previous pregnancy, I have a 60% chance of reoccurrence according to the published statistics. However, our perinatologist didn't feel like this should deter us. In fact he said unequivocally that there is no reason not to pursue a second pregnancy. He explained that the likelihood of delivery before 32 weeks is less than a 15% chance, and that while I am at high risk for it happening again, it often occurs later in subsequent pregnancies. We also spoke about the benefits to taking low dose aspirin during pregnancy, which studies have shown reduces preeclampsia reoccurrence by 25%. The doctor ran blood work on me to make sure that I don't have any underlying autoimmune diseases that could put me greater risk, but when that all came back normal, we were basically given the green light from a medical standpoint. We were fairly surprised by this as we hadn't expected that our doctor would be so supportive, but it was nice to get good news for a change. If he had told us anything else, we were prepared to look into alternative ways to add to our family like adoption.

Dain and I obviously discussed the topic at length, and we went back and forth. It's not easy to wade through all of the what-ifs, especially when we both know what it's like to limp out the other side of a worst case scenario. But we both agreed that we want more children and that we are willing to try again. It was very much a gut decision. Once we agreed on our near future plans, I did some other things to prepare as well. I got in fairly good shape over the summer, running most days and eating healthy, just to make sure that I was ready from a physical standpoint. I also took out life insurance on myself because I'm a planner and I'd been meaning to do it. Dain already had it. We already had wills and health care directives along with a named guardian for Olive, which are all things that I think are incredibly important once you have children.  I also have a binder that I regularly update with all of the critical information someone would need to take care of Olive because one of the scariest worries for me is what would happen with Olive if I wasn't around. Obviously Dain can take care of her, but if something happened to both of us, it wouldn't be at all intuitive for someone to jump in and take over her tube feeding regimen. So I have written out everything from her schedule to her menu to how we prepare the food to all of her medical information and contacts. It mostly just makes me feel better.

Most importantly, I found and met with an OB/GYN practice this fall that came highly recommended and works closely with the perinatal group I prefer. Their practice also delivers at the hospital we want to deliver at since we could never again plan to have a baby anywhere that doesn't have a level three NICU attached. We just know too much about everything that can go wrong. The perinatologist suggested seeing a regular OB doctor with the knowledge that we would transfer to his group of specialists immediately if anything was out of the ordinary with a second pregnancy. The best thing we can do in another pregnancy is to watch my blood pressure closely and treat it aggressively at any sign that it's rising. Unlike my first pregnancy, I'm certain that I will have competent and diligent medical care.

On New Year's Eve, we found out that I am pregnant. Cue the terror and panic. Just kidding. Or not. It ebbs and flows. We chose not to tell anyone for a few months this time around. Mostly because I knew other people would worry too, and I wanted to prolong that as long as possible. It was a long, cold winter of nausea and fatigue, and Olive was kind enough to stop napping to coincide with my pregnancy. She is so sweet. I've had lots of symptoms that I didn't have while pregnant with Olive so we are hopeful that this will just be a completely different pregnancy in a good way. Long and healthy.

As we entered the second trimester, we slowly told family and friends and started to talk to Olive about it more. And it seemed more real. We've had what seems like many doctor appointments in accordance with the written care plan from the perinatologist that details careful monitoring during this pregnancy, and at 23 weeks now everything is looking good so far. We've had three ultrasounds already and will have growth ultrasounds every four weeks at this point along with weekly monitoring at 30 weeks. We had a detailed level two ultrasound with a perinatologist at 20 weeks, and thankfully the baby was measuring around the fiftieth percentile and looking healthy in every way. Also, my blood pressure has been normal. I monitor it at home a few times a week, and I take one low dose aspirin daily along with my prenatal vitamin and a calcium supplement (the verdict is out on whether this will help but research has shown it to be helpful in reducing preeclampsia in populations with low calcium intake.) In other words, I'm doing everything I can. We will definitely not be missing any warning signs around here this time.

We debated but ultimately decided not to find out the sex of the baby, at least not yet. Our nicely packaged, sugar-coated answer to the ever popular "are you having a boy or a girl" question is that we are going to be surprised. The truth is that we are both scared as hell that we're going to have a baby born early again, and we know that preemie boys fare worse than preemie girls in the NICU. Knowing if it was a boy would unnecessarily add to our worry list. But that's a heavy answer for the checkout line at Target or the mom at the park just making conversation. And the honest truth is that it doesn't matter. We'd be exceedingly happy with a big, healthy baby. Boy or girl.

My exhaustion has led to a new household standard of "good enough." 

I'd be lying if I said it wasn't terrifying to be pregnant again. It absolutely is. I don't like anything about it. I'm not glowing. I'm not buying tiny clothes or planning a Pinterest worthy nursery. Instead, it's uncomfortable and exhausting and stressful, and it's hard to turn off the anxiety. One of the hardest parts for me is having everybody comment on it now that it's obvious. I know people are just being nice and friendly and that it's probably something most pregnant women don't mind, but left to my own devices, I'd stay home until September in order to avoid the awkward conversations that I end up in. Last week another mom at one of Olive's activities asked me if I go full term. I was kind of taken aback by it and blurted out that no, I hadn't with Olive and that she was born at 28 weeks. Her response? "Oh that would be soooo much better than going late. I was 42 weeks and in labor forever before they had to do a c-section." After I picked my jaw up off the floor, I said something nice like I'd much rather go late than early. And she said, "really, you think?" It was like being in a bizarre, parallel universe. I know she didn't mean to be offensive and obviously didn't stop to think about it, but it's hurtful to hear somebody trivialize a very traumatic experience. If I'd had a giant inflatable hammer in my bag, I may have bopped her with it.

For now, I'm trying to take it one day at a time. And honestly sometimes it's more like one hour at a time. My mind wanders to my fears on a regular basis, and I try to acknowledge them and quietly move on without dwelling. But I am very much a worrier and a planner, and I like to be prepared for every possibility. I'm already doing things like buying birthday gifts two months out "just in case." 23 weeks is a scary place to be because it is the brink of viability for a baby born early, but I'm thankful for every day that I'm still pregnant. I'm also thankful that I have Olive around to keep me occupied so that I rarely have time to sit down and think too much. Every time a negative scenario crosses my mind, I try to remember to consider the possibility of something amazing happening too. Nothing would make me happier than to have the magical moments. The moment where the doctor hands you your baby in the delivery room. The moment where the big sister comes in to meet the little one, and you think to yourself that your family is complete. The moment where you get to tell grandparents about the new grandchild and have everyone full of happiness and joy and love. Those narratives keep me sane. The best quote I've seen lately is something from J.K. Rowling as written in Harry Potter along the lines of "what's coming will come and we'll meet it when it does." It pretty much sums up being in the midst of a pregnancy with a high risk of preeclampsia. Because if it's coming, it will come. And truly all we can do is meet it if it does. And then fight like hell of course.