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.

Lots of Progress and a Pokey Eater

Today was my original due date with Olive. I still sometimes think to myself that this is the week I should be planning a third birthday party and celebrating my spring baby. Of course, we did all of that, only back in January. So instead I'm focusing on all of the progress that Olive has made as we reach the three year adjusted mark. And on May 3 in honor of the day we brought this kid home, we will bring treats to the doctors and nurses in the NICU and the Ronald McDonald House to thank those who took care of Olive and to provide a tiny ray of sunshine for other families that are trudging through the dark days of having a hospitalized child.

Olive's footprints on her birthday and her due date.

We visited Children's once already in early April for Olive's NICU follow-up clinic appointment. I look forward to this visit every year as we get to meet with our favorite neonatologist, Dr. Hoekstra, who cared for Olive when she was at her sickest. It also serves as a time to check-in with her developmental progress as they administer the Bayley test to ascertain where she stands in relation to her peers in the areas of cognitive development, language and motor skills. This is the first year that Olive has been a willing participant for all of it, which was an incredible change from even a year ago when she screamed and cried and threw up multiple times in protest. This year provided good news all around. She is healthy, and she is developmentally normal. She tested at or above her actual age for all areas. Most notably, in the past twelve months, she has made massive strides in the areas of expressive language and gross motor skills to the tune of a 17-19 month leap on the test. Last year they recommended formal speech therapy for Olive's expressive language delay. This year she was described as having excellent articulation and vocabulary with language skills that are nicely above expectations. Yet another example of Olive taking her sweet time and working on her own schedule. That's our girl.

Anxiously awaiting her developmental test at the NICU Follow-up Clinic.

I truly have nothing to complain about as a mother. Olive is doing really well. She finally hit the 25 pound mark, clocking in at around the third percentile. Obviously still small but she chugs along on her own little curve. The little Olive that could. According to her dietician she gets about 1500 calories a day between the small amount she eats orally, the milk she drinks, and her tube food. And she spends all day trying to burn every single calorie. The girl is non-stop.

This month also marked the first time I've ever left her anywhere. She started big girl school as we call it. It is only one day a week for an hour and a half, but that's a big step for us considering we've only ever left her with three other people in her whole life. On the first day, she calmly gave me a hug and ran off to play. Meanwhile I was a complete mess walking away from her for the first time ever. She did amazingly well, and she looks forward to it every week. It bodes well for preschool this fall which will be three days a week. It will only be two and a half hours per day, however, meaning she will not need to be tube fed at school thankfully. Instead, she'll get to enjoy it as a typical kid and be able to sit down for snack with her peers. Hopefully it will motivate her to want to eat.

She still very much prefers milk in a "little bottle," but we are working on an open cup.

In other positive news, at her eye exam this week her doctor told us that at this point she will have no lasting effects from the eye disease (retinopathy of prematurity) that she had as a baby. Her eyes are healthy, and her eyesight is that of a typical three year old. We couldn't ask for better news. Also, upon her third birthday she was discharged from our local ECSE (early childhood special education) program that provided intervention services to her from the time she came home with an educator, occupational therapist and speech therapist making home visits. She didn't meet any of the criteria to continue to qualify for services as she is a typical three year old from a developmental standpoint in the areas that they look at, and she doesn't have any of the conditions that automatically qualify a child for services.

Obviously this is all great news, but it leaves us in an odd spot. We have a child who is basically kicking ass and taking names in all areas but one. And to us it's a BIG FREAKING DEAL, but everyone else is not that concerned in light of the fact that she is happy, healthy and well-nourished with documented growth and developmental progress. She just doesn't eat. Details right? The fact that she remains tube dependent is almost an asterisk in her medical record at this point. I've never heard a medical professional articulate Olive's problem any better than Dain or I can. It's typically something like "g-tube fed as a result of extreme prematurity." I get the overwhelming feeling that she is an anomaly in that there is no greater underlying reason as to why Olive doesn't eat. She doesn't aspirate. She doesn't have a digestive disorder. She doesn't have any food allergies. She doesn't have any sensory issues. She just lacks the skill, motivation, and desire to orally eat.

Olive's first day of big girl school.

It's frustrating as parents because there just aren't that many resources out there for children like Olive. We don't personally know anyone else that is in a similar situation to us, and there are no local support groups for parents of tube fed kids that we know about. In fact, people who should know exactly what to do with a child like ours (like the gastroenterologists that insert feeding tubes or the pediatricians that recommend them in the first place) have no clue what to tell us in regards to how to ever get it out. But the beat goes on and so do we. I'm in the process of fighting our insurance company (again) to get the one therapist (of about 10-12 that we've seen) that has been helpful to us to be covered as an in-network provider. I'm hopeful that we may be able to get her services approved and make some bigger strides this summer with a little professional help. Otherwise we are going to have to rethink our plan and try other in-network providers. The problem is that very few speech pathologists or occupational therapists specialize or have any sort of expertise in feeding problems in children with long term g-tube dependence. The lack of resources in a major metropolitan area suggest that it is clearly not that common of a problem, and we've heard from people in the field that it is a relatively new area of study as more and more children are surviving extreme prematurity thanks to medical advances.

Enjoying a "lizard" as she calls it. She'll take 5-10 licks of ice cream.

We've been going it alone since coming home from Virginia in November. Party of 3. Every day. Every night. Every. Single. Meal. I'm not going to say that it's not exhausting to be working on oral eating and skills like drinking from an open cup while still doing all of the other tasks necessary to keep Olive nourished through her tube. I spend more time with our blender than I do with any human being besides Dain or Olive. It gets old. We get frustrated. We've been talking about needing a vacation for as long as I can remember...one without dishes or a blender. BUT everything we do is working, albeit very slowly.

The aftermath of a meal with Olive.

Olive is improving her oral skills. In the past two months, she has started being able to eat more and more foods. Does she eat very much? No. Does she do a good job chewing? No. But she has come a long way in dissolvable foods. She will finally let things stay in her mouth long enough to melt so that she can swallow them. We've added so much to this list of foods: Pirate's Booty, vanilla cupcake goldfish, soft cheese, mini vanilla wafers, cheerios, golden grahams, and sweet tarts to name a few. She still routinely gets overwhelmed by even soggy pieces of her food and has her moments where she gags and sometimes throws up trying to get something out of her throat. She recently had a mouthful of a chicken/artichoke/pasta bake that she was moving around for awhile. But when it all dissolved she panicked, gagged and threw it up. She then promptly looked at me and exclaimed "Mmmm, that chicken was so yummy mom." So clearly she is unfazed by her skill set. She goes right back to it, which is really all we can ask at this point.

Sampling a s'more in the backyard.

We offer her a plate at dinner time, and we all sit down to eat. But I've found that it's more effective during the day to be more casual about it. When I'm eating breakfast or lunch or having a snack, I set out food for Olive in a bowl or on a plate, and I let her graze. I don't make her take tastes or dictate her interaction with the food. And it works a lot better to have it be on her own terms, which is true of most everything with a three year old. It's still very much a messy endeavor for Olive to be eating, but she's slowly improving and becoming more confident in her skills. All we can hope is that she continues to eat more and more. Chewing is the next big hurdle as it would obviously cut down on the choking, but she really hasn't mastered the concept yet. Hard foods are still mostly impossibly for her to do anything with other than lick or suck on, but she is getting better with thicker liquids (like soup) and her go-to soft foods like goat cheese. She will finally use a spoon correctly with some help and actually put the whole spoon in her mouth, round her lips, and eat food off of it. So while it is sometimes hard to see on a daily basis, we are making progress with this pokey eater.

RSV

Day 1 of RSV. The calm before the storm.

At the end of February it finally hit. RSV. One of the most dreaded foes of the micro preemie parent. We spent two years of Olive's life specifically trying to avoid this illness. Respiratory Syncytial Virus or "RSV" is actually the leading cause of hospitalization for infants in the U.S., but for premature babies it is especially dangerous as they have smaller and more fragile airways and also fewer virus-fighting antibodies than full term infants. The tricky thing about RSV is that it is incredibly common. In fact, in most adults and older children it presents just as a common cold so it is nearly impossible to tell if your sniffles are RSV or a simple cold virus. Doctors say the vast majority of all children are exposed to it before the age of two, and you are exposed to it over and over again in the course of your life.

Image from rsvprotection.com

Olive had two things working against her when she was discharged from the hospital in May of 2012. The first was simply her gestational age of 28 weeks giving her underdeveloped lungs, and the second was the fact that she was diagnosed with bronchopulmonary dysplasia (chronic lung disease) and discharged on oxygen. These two facts made her much more susceptible to respiratory illnesses. In our first meeting with her outpatient pulmonologist in May 2012, he explained to me that Olive had small and damaged lungs and that we needed to do everything in our power to give her lungs time to heal and grow healthy tissue. Any respiratory illness could have been a major setback for Olive with a very strong likelihood of hospitalization. This realization very much set the tone for the next two years of our lives.

January 2013

We followed the doctor's directive. We stayed at home in our clean, controlled environment. We kept her out of public places only taking her to doctor's appointments where we always requested being put in a room right away to avoid the waiting room. We avoided sick people like the plague. We had very few visitors. We rarely went out. We missed out on a lot of fun with friends and family. We purchased more hand sanitizer and Clorox wipes in a two year span than most people do in their entire lifetime. Skin would peel from our hands from the hand washing and sanitizing. We both wore masks anytime we even had the slightest sniffle. We had a home health care nurse come monthly during Olive's first winter home to administer Synagis, a monoclonal antibody given as a shot that helps to fight RSV, to the tune of nearly $10,000. I pumped breast milk 8 times a day for nearly 13 months in hopes that if we did get sick she would at least get some antibodies from me. It was a lonely existence. And I would do it again in a heartbeat. Because everything we did meant that when Olive finally did get RSV at three years old, she was able to handle it. Her lungs were strong enough to fight it without oxygen or steroids or hospitalization. And that's a big win.

Day 3 of RSV. Barely enough energy to watch the iPad.

Olive started with a runny nose on a Thursday and by that night she was coughing so bad that she hardly slept. On Friday and Saturday she still had energy, but her nose was dripping like a faucet and she had really bad coughing fits that obviously hurt and started to make her throw up any food that was in her stomach. We had to stop her regular tube feeding meals and switch to smaller amounts more frequently of Pedialyte to keep her hydrated and simple blends of things that are easy on the tummy like bananas and brown rice or applesauce. By Sunday she wouldn't even stand up. Her heart was racing, and she was working really hard to breathe even when she wasn't coughing. We could see her tummy sucking in and out with every breathe, and she had a low grade fever. At that point we decided to take her in. Learning our lesson from last time, we took her to the Children's emergency room right away.

Last time we were there she was running around the halls. This time she needed to be held or carried the whole time, making for a long three hour wait. When we were finally seen the doctor ran tests for flu and RSV and ordered a chest x-ray. It didn't take long to learn that she tested positive for RSV/bronchiolitis. That definitely explained her symptoms. The first time you are exposed to RSV is typically the worst with your body being able to fight it off better with subsequent infections. Her oxygen saturation was a little bit low, but the doctor wasn't concerned with it. Her lungs sounded clear without any wheezing, and her x-ray looked good. Despite having a sick kiddo, it was actually good news. Her body was doing a really good job of fighting the infection. We were surprised when they said that all we could do was wait it out. They didn't prescribe anything explaining that nebulizers only work for patients that have wheezing. We were directed to use Tylenol for the discomfort and follow up with our regular pediatrician in 1-2 days. The doctor also assured us that days 3-5 are the worst and that we should see improvement after that.

Day 4 of RSV. She didn't move.

While we have obviously seen her much sicker, it is scary as hell to see your child sick. She didn't stand up for Sunday, Monday or Tuesday. I basically just carried her back and forth from the couch to her bed and sat next to her all day watching her breathe, helping her through her coughing fits and tubing Tylenol, Pedialyte and small amounts of food. We ran a humidifier constantly and covered her feet in VapoRub. She wouldn't eat or drink anything. Not even milk. Her tube was actually a godsend as it allowed us to keep her hydrated. On Tuesday I took her to her pediatrician. She still had a low grade fever, but her lungs still sounded good so the doctor echoed the same sentiment of wait it out and go in to Children's immediately if she gets worse. This was day 5. And on day 6, we finally turned the corner and we started to see glimpses of our happy, energetic little girl again. However, it still took another 3-4 days for her to be back to normal with her cough lingering for a total of almost two weeks.

Day 7 of RSV. Finally catching up on her emails.

Of course then Dain and I both got it, but it was just a small cold for both of us. The disheartening part is that Olive lost a pound and a half in a little over a week. That's kind of devastating to me. Dain of course talks me down, but that's hard ground for us to make up with a kid that is volume sensitive and doesn't eat very much. It took about two weeks for her to even want to drink milk again. Thankfully we are on the upswing now. She has been doing a good job with oral eating (which I'll update on soon,) and we are in the process of doing a nutritional analysis with our dietitian to see how we can improve her meal plan or increase calories to try to pick up her weight gain. Yesterday we received the bills from her RSV infection. The mass amount of medical bills I've seen these past three years used to stress me out, but I'm finally coming to terms with the fact that we are just going to hit our out-of-pocket max. Every. Single. Year. Par for the course with a medically complex kiddo. Who wants to spend their money on warm vacations anyway? Minnesota is so beautiful in the winter and spring.

Last Monday, March 23, 2015. Happy Spring Minnesota!

LOVE

February 14, 2012

The night of February 13, 2012 into the early morning hours of February 14 was the most difficult day in the ten and a half years that Dain and I have been together. Olive was fifteen days old and encased in a plastic box with tubes and wires running out of every appendage on her tiny two pound body. She was struggling to breathe despite being on maximum ventilator support. Her damaged and underdeveloped lungs had begun to clamp down on the ventilator tube necessitating that nurses hand bag her with oxygen to force her airway open. We were told that our best option would be to start her on dexamethasone, a powerful corticosteroid that aids in extubation efforts but carries significant possible side effects including cerebral palsy. A gut wrenching decision made easier by the events of this night.

It was after ten o'clock at night, and I was pumping one last time in Olive's room before we were going to head back to the Ronald McDonald House to sleep. Olive had a new nurse that we hadn't had before, which always made me a little uneasy about leaving her. At this point, her alarms would go off dozens of times every hour indicating problems with her oxygen saturation, heart rate and/or breathing rate, and she needed her own dedicated nurse on each shift. We had been told things like not to panic about the alarms if we didn't see any of the staff concerned and to always look at Olive instead of the monitors as you can tell more from looking at her. It was still unnerving to hear the constant dinging and ringing, and it always made one of us look at the screen as we were learning what all of the numbers meant. Those alarms echoed in my sleep for months after Olive came home.

On this night Olive alarmed over and over and over. And many times she could correct the problem herself. The nurses often silence the alarm on the screen in the room or with a remote from the hallway. They could silence it for thirty seconds with one tap or three minutes with two. This was a constant. A nurse silencing the alarms and then watching the screen carefully to see if she came back up. If she did, they would reactivate the alarms. If she didn't, they would quickly take action to correct the problem, which sometimes meant adjusting her oxygen and sometimes early on meant hand bagging her with oxygen. I was confident that the nurses had it covered because everyone we had up to this point was phenomenal. And then we lost that feeling of security.

Our nurse on this night silenced Olive's alarm for three minutes while I was pumping on the couch with the curtain pulled. And then instead of watching Olive or the screen she turned her back and started entering things on the computer. Dain stood up to make sure everything was ok, as one of us typically did, and instead of him reporting that it was fine, I hear him say to the nurse, "is she supposed to be blue?" And then the world started spinning as I pulled back the curtain and frantically disconnected myself from the pump. The nurse ran over and simultaneously started yelling for help and trying to hand bag Olive as she had clearly stopped breathing. Then she hit the code button on the wall. People flooded in the room as Dain and I huddled in the corner horrified. They were calm, their actions calculated, while I had silent tears streaming down my face, and Dain was shaking as he crouched down on the floor next to me with his head in his hands.

Our world stopped in that moment. I don't know what my conscious thoughts were. We had been walking in a fog of fear for weeks, but on that night, that fear stood up and stared us down. We both thought we were going to lose our child. Time stood still, yet it must have only been a minute or two before the respiratory therapist and other nurses stabilized her. The neonatologist working that night had just left for a delivery at the hospital next door, but he was on the phone with the charge nurse giving directions to change Olive's ventilator settings. It was a careful commotion in room 3450B that night.

And as fast as we plummeted into that horrible moment, we were back to the status quo of having a critically ill child with alarms sounding every few minutes. We obviously asked for a different nurse that night and were accommodated without question. She made a mistake. And while to err is human, when a parent witnesses what we did, there are no second chances. She was never assigned to us again. We also met with the doctor when he came back from the delivery. He brought us in an office and showed us what an infant's lungs should look like compared to what Olive's most recent chest x-ray showed. You couldn't make out the shape of little lungs or see any ribs. It was just white. Almost completely white. Her lungs were incredibly damaged. They did cultures to check for infection and began treating her for presumed pneumonia with a cocktail of strong antibiotics.

We finally left her room some time after two that morning as different people than had walked in hours before. We trudged in silence together to the Ronald McDonald House located just a hallway over from the NICU. We slept or didn't sleep for maybe four hours before heading back to Olive's room, waiting for the day neonatologist to round on Olive. And on Valentine's Day Olive began a three day burst of dexamethasone to save her life. It was one of two times that I had to sign a consent form for her medical care, blood transfusions being the other. And while I understand the point of the form in this litigious day and age, on an emotional level it really makes a parent feel responsible for the consequences of this one decision. Yet, there wasn't another option. And as painful as it was to see our itty bitty baby squirming from actual "roid rage" for three days, that was in fact our turning point. Olive was extubated within 36 hours, and we never needed that tube back.

High fiving dad after starting to feel better on February 18, 2012.

She needed oxygen for another four months, but to look at her chest x-ray today you wouldn't know where she started. I stand in absolute awe of modern medicine and the healing power of the human body, but in all honesty, there hasn't been a night since that one where I haven't checked to make sure Olive is breathing. I still do it. Three years later. I can't sleep until I gently place my hand on her belly and feel the rise and fall of those little lungs with my own hands. Dain sometimes gives me side eye, but I know he does it too.

Rocking a nasal cannula on February 18, 2012.

I share this story because it's Valentine's Day this weekend, and this is a part of my love story. The love of a husband and a wife. The love of a mother. The love of a father. Sadly, divorce is statistically much more common among parents of children with medical problems or special needs. It's really stressful, and people can have different reactions to the pressure. It can absolutely tear you apart. Or it can bring you together. The social worker at the hospital used to try to casually ask me about how Dain and I were doing as a couple. And at the time I thought to myself, this seriously isn't about us lady. But I now see her point. We're among the lucky ones. We walked away from it hand in hand with an incredible little girl in tow.

November 2014

And we continue to wade these waters together, even though it's not always pretty, it's not always fun, and it's not always easy. Thankfully Olive's feeding tube is our last big hurdle. And while we wish she wasn't tube fed and that she would pick up eating skills faster than she is, the reality is that this feeding tube is the reason she is healthy and thriving.

This week also marks feeding tube awareness week for those of us immersed in the world of tube feeding. Organized by the Feeding Tube Awareness Foundation, the point of the awareness campaign is to dispel myths about feeding tubes, connect those that use feeding tubes, and educate those around us on why our children have these and what it looks like to have a child with a feeding tube, which we have been trying to do through this blog. I would encourage anyone to read the Family and Friend Guide to Tube Feeding as it articulates many powerful points about what we as parents wish everyone would understand about our life with a tube fed child. It may not be typical, but that certainly doesn't mean it isn't rich and full and awesome. With that, happy Valentine's Day everyone. Be thankful for who you have.

Birthday Round-Up

January is a big month in this household as we celebrate two birthdays. Olive was due on April 23, which should have put her in my birthday month, but as it turned out, she instead shares Dain's birthday month. This year was fun because Olive is mostly obsessed with birthdays and all the accompaniments. Singing (or kind of shouting) "Happy Birthday." Birthday cake. Birthday candles. Wrapped presents, the contents and recipient being completely inconsequential. Have a birthday celebration? Need a hype girl? Olive's got you covered.

The best sous chef around. Especially if you're not in a hurry.

First on the docket was Dain's birthday mid-month. The big 3-2. Not exactly ancient, but we're creeping up there. It was on a Wednesday, which we all know is not the best day to have a birthday, but we made do. Birthday morning banana bread baked with love from his two ladies. The green light to treat himself to a nice lunch out. And a dinner out at our local haunt with the aforementioned ladies followed by a homemade carrot cake at home, candles, singing, and a few presents. Can you tell at least two members of this family really like to eat?

Olive is always available to help with birthday candles. 

I'm the first to admit that it's not exactly relaxing to go out to eat with a toddler, especially since she isn't really lured by food like most kids. You better believe we would order her all the chicken fingers or mac n cheese or even corn dogs (~shudder~) if she'd eat them, and we could get in a few minutes of adult conversation. That doesn't happen. It's more like order as fast as we can, pray it comes fast, and shovel in the food while asking for the check before Olive loses interest in the bags of activities and little toys we've lugged along and decides to climb into someone else's booth.  And now that she is potty training, we of course have to visit every single bathroom wherever we go. So that eats up a little bit of time.

As I write this I'm realizing how immersed she is in a culture of food. Olive actually prides herself in ordering pickles at most establishments. And she wants her own drink and her own plate, where we divvy up a small amount of whatever we are eating. She usually tries everything even. Unfortunately that's where it stops at this point. She will take a tiny lick of whatever she is offered, pronounce that it is delicious, and then turn the pieces of food into boats and break into "Row, Row, Row Your Boat." It's frustrating to say the least, but at least she is experiencing food in all sorts of normal environments.

This bowling ball weighs four times more than Olive did on January 30, 2012.

Dain enjoyed his day, and then we moved on to the third birthday blitz. Our first celebration came a few weeks before Olive's actual birthday due to the stars aligning for all four of her cousins being available to celebrate with us while we were visiting Rochester. Enter her first visit to a bowling alley. She loves everything about her cousins, and she was so excited about doing something special with them. It didn't disappoint. She bowled (with some assistance), cheered for her cousins, people watched, visited the bathroom like a big girl, finagled her own bag of cheetos from the vending machine (and Papa) that she proudly carried around, and stared in awe at the arcade games. Then we headed back to Papa and Gigi's for pizza and cake. Of course the birthday girl didn't really eat anything, but we still make her a plate and give her the experience of eating with her cousins. It was a perfect, simple and casual birthday get together.

Team assist from her cousin Tristan. We only got two balls stuck halfway so that's a win.

Next on the birthday agenda was Olive's first trip to the Mall of America the day before her birthday. The MOA is one of those places that I avoid at most costs, but I made an exception for Olive as I knew she would love it. We went with Dain's family, and hit up the aquarium, Nickelodeon Universe, Legoland, and a sit down dinner. It was an action packed Thursday evening, but Olive had a time of it. She especially loved the rides, as she had never really been on any before.

Riding the dragon on the carousel at the Mall of America.

Then on January 30, we celebrated the actual big day. Olive awoke to streamers and balloons in her doorway. She ran out of bed and said "oh dear, what happened here?" We had a pretty chill day at home, with a visit to the store to pick out a few more art books (as Olive is obsessed with the do-a-dot dabbers.) Since we'd already had a big cake at the bowling party, we let Olive pick out a cupcake from the grocery store. She chose a lemon meringue masterpiece because she's fancy like that. After presents and dinner, we sang to her one last time and she tried her best to blow out the candle. Then she proceeded to annihilate her cupcake. Do most three year olds have a smash cake? Nope. Most of them want to eat the cake. Our sweet daughter took a lick of the frosting and said "it kind of tastes like milk from the grocery store." Whatever that means. Then, two years late, she smashed that cupcake into pieces, enjoying every minute of it.

The night ended with a "birthday bath" including dimmed lights and glow sticks in the tub. It was pretty fun. And well worth $2 from Target. She loved it. Pinterest for the win on this one. We then washed all the glow sticks and put them in a cup for a special birthday nightlight and tucked in our three year old. A solid birthday and a solid month of birthday celebrations.

And now our teeny tiny baby is THREE. Birthdays seem to bring about reflection on the past year and the upcoming year, and this year hit me harder than the first two. It's been a long three years. And the night before Olive's birthday, all I could think about was what we were doing three years prior. Sitting in a hospital room. Terrified. Waiting. Everything beyond our control. But I try not to feed my fears, and I talked myself down from that thought train. Inhale the future, exhale the past right? Because the future is bright for this little girl.