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.

December and a New Year

The best cupcake ever according to O and her tiny tastes.

Whew. We all made it to 2015 happy, healthy and relatively sane. December was a long month. Dain had to work ridiculous hours and pretty much every weekend so it left us ladies at home trying to keep it all together in the midst of all the craziness that comes with the holidays. Despite a few really trying weeks though everything came together. Olive and I spent a fair amount of time in Rochester with my family, which was really great as she's finally at a point where it's not that stressful to travel with her by myself.  Of course she still has her moments, and I'm constantly reminded that it's never going to be easy with this kid, but it is night and day from even a year ago.

My cookie exchange taste tester. And by taster I mean licker.

Thankfully she has been doing really well with not vomiting, but she still pulls it out at inopportune times. Like sitting at a Mexican restaurant after sampling the (very sharp) tortilla chips. Or pulling up to school after the holiday break. Or at ten o'clock at night after getting herself worked up over not having someone fall asleep with her. It's kind of something we always have to be on the lookout for and prepared to encounter with this kid. Choking, nerves and anxiety, and tears always bring the possibility of vomiting, but that used to be a given with those happenings so we are moving up in the world.

Helping Papa with the guacamole.

Olive has really made a lot of progress in the past six weeks. For one, she has started to fall asleep on her own (usually anyways.) It took almost three years to get to this point, and I should add that to date she has never slept through the night. Not once. Maybe by the time she's four?  From the time she was born, she has never been able to fall asleep on her own, which has been exhausting. We always knew that it would get better though, and it finally has. The last few weeks of December were life changing when Olive started to go to bed on her own without one of us having to be in there with her for an hour or more. Granted she still needs someone to sleep with her in the middle of the night, but it's a start in the right direction. It was honestly the first time in her existence that I haven't dreaded bedtime with her because as all parents know, by bedtime you are seriously ready to clock out for the day and just take a breath without someone crying or whining or kicking you in the back. And then we sabotaged our own success by introducing something new and different and terrifying to Olive: potty training.

Mini M&M aftermath.

Starting on January 1, we decided to start the potty training process. Although I know it had to be done and will eventually be a great thing, I very much regret that decision. I thought I would be so excited not to buy diapers, but I seriously wish we could just go back to the good old days of nice, leak free diapers. So. Much. Easier. Perhaps it is still because I'm in the trenches on this one that I don't have enough perspective, but potty training is horrible. Olive just doesn't get it. There have been so many accidents. And I can't even call them all accidents really because Olive is definitely exerting her power in this whole situation. But we've dug in on this one, and there's no turning back. Because apparently you're supposed to commit to it and never look back despite how much you want to just hang up the towel for a few months. So committed is what we are. Even though we've barely left the house this month and have done an insane amount of laundry. It'll get better right? That's our everlasting motto in this whole parenting business.

The baconator.

Of course the potty training has thrown a kink in those few blissful weeks of going to bed on her own. My child, who has peed on most surfaces of our house at this point and will deny having to go even when she's a second away from peeing in her pants, all of a sudden knows that she has to go potty when she's laying in bed by herself. So it's an hour of her screaming out that she has to go potty, us helping her go, and then her waiting a few minutes before trying it again. A classic power struggle. And Olive is winning. If I spend all day watching for her cues, we can get to the bathroom in time, but it makes it pretty hard to get anything else done around here. My hope is that in the next month or so we can finally make it to the point where Olive knows she has to go and tells us as much throughout the day.

Progression and regression. That's the way it goes. On the eating front, Olive has made some improvements in the past month. She's still doing a good job on mini m&m's. You have to ask her to eat them. And by ask I mean coax. As in, eat three more and then you can go on your climbing wall (or whatever other bribe will be effective in that moment.) But she'll do it without too much of a fight. She has also been doing a good job with meltable yogurt snacks made for babies. She has eaten a few of them in their entirety, which is also big progress for her. Her instinct is still to spit them out when they get mushy, but if you push her, she can do it. It does stress her out though, and she's usually only game for eating one at a meal.

Tubing water while the princess sleeps.

Her biggest progress has been in eating goat cheese, her most favorite food. She has finally started to take bites of it from a spoon using a closed mouth and actually biting down on the spoon. This is something Polly tried really hard to get her to do in Virginia, and she has finally come around to doing it in practice. This has really just been in the last week, but she will take very large bites of goat cheese. Measurable amounts not just tastes. So that's awesome. We're not really sure where to try to go from goat cheese though. She is liking chocolate so we may introduce chocolate pudding again despite her not being that into it in the past.

Our biggest challenge is getting her to bite and chew on her molars. She certainly hasn't improved too much on this. She really doesn't get that she needs to move food to those back teeth to chew. Hopefully this will come to her too because it's pretty clear to us that at some point we need to do another hunger challenge like we did in Virginia. Olive has no incentive to eat. She is not hungry. She receives all her nutrition through her tube so she doesn't need her body to give her those hunger signals. It's good and bad that it's winter right now. In one respect it's good for her to not be quite as active as she was this past summer and fall so that she can put on a little bit of weight, but it also makes it hard to work up an appetite. Hopefully by spring we'll be ready to try to cut back on her tube feeds a little more to stimulate the hunger aspect. There is just no way around the catch 22 of wanting her to gain weight and to feel hungry enough to want to eat. She's clocking in around 24 pounds, 3 ounces so it will be interesting to see what the pediatrician says at her three year checkup next month.

Mastering the toothbrush.

Another area where we have seen major strides is on brushing her teeth. Olive resisted teeth brushing from the get go, which is not really surprising for a kid with an oral aversion. Our pediatrician would ask us if we were brushing her teeth and give us a new toothbrush, but up until a few months ago, Olive would gag if we tried to brush her teeth. We stuck with it though and now she is doing an amazing job at it. She does a little brushing and then she lets one of us get all of her teeth and her tongue, which Polly said is a good way to get her used to sensation on her tongue.

The result of asking a two year old to smile nicely.

On a happy note, we really had a great Christmas. This was the first year that the three of us celebrated with extended family. Her first two christmases were spent with just us at home as we were trying to limit her exposure to germs. So it was incredibly wonderful to spend time with family and return to traditions of Christmases past and start new ones. Olive was excited to be at a party on Christmas Eve and to have so many people around, and we also went on a sleigh ride with her cousins a few days before Christmas, which we are still talking about regularly. We also were fortunate enough to spend time with all three of Olive's great-grandparents around Christmas. And the biggest Christmas miracle is that everyone seemed to be healthy at all of our gatherings, and none of us got sick, which was a nice treat as it seems to come with the territory of large family gatherings this time of year. Plus Dain had nearly two weeks off from work, which was a much needed break for all of us. It allowed us to slow our pace, organize the house a little bit, and tackle the potty training mission, which is as of yet unaccomplished. Next on the agenda is celebrating Olive's third birthday in a few weeks. I swear you blink and they are grown up.

November Wrap Up

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

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

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

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

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

Making cupcakes with her cousin Eleanor.

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

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

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

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

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

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

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

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

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

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

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

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

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