Life After the Tube

Wish List: Slackers Ninjaline Kit and a Ride-on Car

It is official. After four and a half years, we said goodbye to the tube. On Tuesday, September 20, 2016, Olive's feeding tube was removed, and the site was surgically closed. It was unexpectedly emotional for all of us and not quite as smooth sailing as we anticipated, but we are incredibly grateful to be entering the holiday season tube-free and healthy. The best gift this year is that we will celebrate Olive's fifth Christmas with a little girl that will delight in her stocking candy, ask for seconds on her cheese, and eat all of her holiday food on her own for the first time.

We awoke early that day, before the sun came up, and the three of us hurriedly plodded to the car with way more baggage, literally and figuratively, than an anticipated one night stay would require and drove to Children's Hospital in Minneapolis. I still cannot make that drive without having all of our memories flood back in. My mind bounces between the face of the happy, thriving four year old that sits in the backseat quizzing me about what exactly would happen at the hospital and that of the five pound baby, in the same backseat, whose face was engulfed with oxygen tubing whom I sat next to as we reversed our course and came home for the first time as a family of three after months in the hospital. The route still carries the weight of the first night that Dain and I left Olive in the hospital, when she was five days old, and I collapsed into his arms sobbing in the skyway on our way to the car as I came to grips with the reality that we were going home and our child was not. We have made that drive so many times without Olive, to see her, that it still seems odd to be going there with her. And to be heading there to remove her tube, the last physical remnant of her difficult beginning in this world, was surreal. Of course our lives have moved on from this in so many ways, but beneath the surface, it's all still there somewhere.

Waiting for her name to be called on surgery day.

We checked in at our allotted time of 6:45 a.m., and Dain and Olive headed to the play area while I filled out the remaining paperwork. Olive was blissfully unaware as Dain and I did our best at pretending that we both weren't secretly terrified of our daughter having surgery. They called us back to the pre-op room, and it was quite a whirlwind from there with visits from admission staff and nurses and anesthesiologists and both surgeons (she also had a lesion removed from her scalp) and a child life specialist to calm her nerves. The one thing that stood out is the amount of questions about her lungs. These people do their homework, and when they look at Olive's history the obvious questions are how damaged are her lungs now, how often does she use nebulizers, does she need oxygen when she gets a respiratory infection and what medications is she on. And when we respond that her lungs are fine and that she needs none of the above, they all pause and remark on how amazing that is. And that right there is vindication for everything that we did to keep Olive healthy for the first two years of her life even when people actually told us that we were being "crazy." Crazies for life.

The allure of the call button.

The anesthesiologist threw us for the biggest curveball when he brought in two oral medicines, Benadryl and something that he promised would fog her memory as if she'd had a lot to drink, and looked at us noting that we'd probably be better to give it to her since we were used to it.  Haha, nope. Funny story but we had actually never given Olive oral medication before since we always had the tube and obviously used it instead of facing that battle. We played it cool like we could totally handle it, but we made a scene as we tend to do. After we struggled, and that's an incredibly charitable way of describing those events, Mike the anesthesiologist did an about face and offered to do the second medication because "sometimes it's easier for me to be the bad guy." Indeed, Mike. Indeed. And then Mike looked at me and advised that while one parent was welcome to come back into the operating room until Olive was asleep, it was sometimes better to not go back, especially if you were going to be emotional or make the child more nervous. Dain's face failed to belie his steadfast agreement with Mike. He certainly thought he'd hold it together if he were the one to hold her hand as she was put under, and obviously he would be the solid bet. But this was one of those things that I knew I had to do, despite everyone's apparent lack of faith in my ability to do it without totally alarming everyone involved. Yay motherhood.

The glowing toe.

In a way this was my full circle. On January 30, 2012, it was her and me in an operating room alone awaiting the moment that would define our lives for years to come as the strangers around us carried about their work day. And much like the day she was born, this day wasn't easy. Putting on a brave face when you are absolutely terrified is tough, but I showed up for Olive and Dain. I resisted my urge to cry as Dain said his goodbye, and I instead focused on Olive's fixation with admiring the glowing light of the pulse oximeter on her foot. We stopped at a station in the hallway where I donned a gown and a mask, and I continued to blather on to Olive about mindless and mostly unrelated things. We pushed through the operating room doors into the bright lights and all of the people, and we continued our conversation about her glowing toe as we slid her onto the operating room table and they began to administer the anesthesia through a face mask that she had personally slathered with none other than Dr. Pepper flavored lip smackers carefully chosen from the child life specialist's plethora of scents. They warned me that sometimes kids fight it and how normal it was, and our child came out fighting so I wouldn't expect any less, but it was a little bit unnerving to have to hold her down as she repeatedly tried to rip her face mask off. They pointed out to me when her eyes stopped focusing, assured me she would have no recollection of the morning's events and before I knew it she was peacefully asleep, her hands that have always fit so perfectly in my own, limp and cool. I felt panicky inside and was suddenly sweating profusely but was still outwardly holding it together as I followed someone's instructions to remove my mask to kiss her, tell her I loved her and that I'd see her soon, and turn towards the door where my escort was leading me out. And the moment my feet crossed the plane of that doorway, I lost it. Not being his first rodeo, my escort effortlessly stopped for Kleenex and a moment for me to collect myself before heading back to the pre-op room where Dain sat alone as he did years before on Olive's birthday. His face absolutely assumed that he and Mike had been spot on with their emotional assessment of me, but I assured him that I waited until I left the room to ugly cry with those loud choking sobs down the hallways of that hospital. After a moment to ourselves where we assured each other that she was going to be just fine, we trudged out to the waiting room where you sit and stare at a screen with your child's birthdate and surgery progress status and wait for someone to tell you something.

Olive's G-tube. The inflated balloon held it inside her tummy.

I wouldn't wish it upon anyone. And I felt guilty for being there for a relatively benign surgery when I knew that many of those kids were not as lucky as ours. I heard talk of tonsillectomies and appendix removal, but we also saw prayer circles and tears and parents being led to private rooms to discuss things. A man came around asking if we would like time with a therapy dog, which brought a much needed levity to our awkward silence as the addition of a dog would be about the last thing I would ever want in any situation in my life. The dog lover also demurred on that offer, and after dozens of times of looking at the same screen with lists of birthdays and surgery start times, Olive's plastic surgeon came out to report that her first surgery, the lesion removal, went well and that the general surgeon was working on the tube removal piece. And before we knew it the other surgeon came out, clutching a plastic bag, to tell us that her granulation tissue removal and tube site closure also went as planned. He presented us with her last g-tube that we had placed months before at home, which we had asked for even after the nurse curtly informed us that it wasn't standard procedure, it wouldn't be sterile, and they may not be able to do that. Never hurts to ask, right? We are souvenir people.

There is nothing sweeter than snuggles.

It seemed like an eternity before yet another person came out to announce to us that we could finally see her in the phase two recovery area. We met her in a hallway as she was being pushed in her bed by the nurse on the way to the elevators. I was taken aback by how out of it she was, but the nurse assured us that not only had she put up a fight and refused to wear the mesh hat but that she had asked to see her mom. And juxtaposed against all of the emotion I felt that morning stood the greatest joy of motherhood: the insane power of love.

We walked next to Olive's bed as she was transferred up a few floors to her overnight room, and I jumped at the chance to carry her when we arrived at her room. In fact, for the first time in a long time, she wanted to be held and snuggled so I sat soaking in the snuggles and rocking her as her anesthesia slowly wore off. At some point we switched so that Dain could also snuggle with our child who hardly has time to stop for a quick hug most days as she goes about her busy life and so that I could pump for our other sweet baby who was safely at home with Gigi, blissfully unaware of any of the day's happenings. We hadn't thought she would be quite so out of it, but after a few more hours she was starting to feel better and wanted to be in her own bed.

Popsicle lover.

The most difficult part after surgery is that she was so thirsty and hungry, and she was begging for water. Due to the ridiculous scheduling issues with two surgeons involved, we had switched from the surgeon that we had initially chosen to one of his partners so that the plastic surgery piece could be done at the same time. While I have no doubt that our surgeon was wholly competent, he had much more conservative restrictions post-surgery than what we had been anticipating based on the initial surgery consult. He didn't want her to have anything to drink for 8 hours and nothing solid to eat for close to 24. For us, to have to refuse water to a child that we've spent years encouraging and coaxing and sometimes begging to eat and drink was flat out torture. We are on so many lists of uncooperative parents, but I repeatedly asked the nurse if she could just have a sip of water. Finally she relented and gave her a tiny medicine cup full of water, which did wonders for everyone's morale. This same nurse mind you is the one who told us that if we were fine with it she'd forego a blood pressure reading after Olive went wild as she tried to put the cuff on since it wouldn't give an accurate reading anyway with all her thrashing about. She later casually mentioned that she'd just note that the parents refused the blood pressure. Not entirely accurate, but ok. We own it.

Cruising the halls of Children's Hospital.

Olive perked up as the afternoon went on, and she moved to her bed and discovered "Minions" for the first time on the on-demand movie menu. We watched it at least four times during our short stay. She also became quite fond of pressing the call button to ask for popsicles once she was cleared for liquids, and she was obsessed with her i.v. that had been put in "how I was sleeping" as she repeated. By late afternoon she felt well enough to venture out of her room, i.v. pole in tow, and explore the hallways via each and every car, wagon and push toy in the playroom. Gigi brought little sis Juniper to visit, and at one point we were scolded for letting Olive be so active. Oops. Aunt Katie also stopped by right before bedtime. Olive truly lapped up all of the attention of the day, and her many gifts, including a surprise balloon delivery from afar, really brightened her mood.

Excited to be going home.

I was sad to leave, but after tucking Olive in her hospital bed and Dain on the pull-out parent couch, I headed home to tend to the baby for the night. Dain, who might actually be the world's best dad, reported that they had a relatively uneventful and peaceful night with the nurse being incredibly quiet and respectful, tip toeing in with a flashlight to take Olive's vitals overnight. They ordered one of everything on the breakfast menu when the sun came up and were dining to the giggles of those Minions when I returned. The surgeon and his squad of students had already stopped by early, and Olive had been cleared for a mid-morning discharge pending a successful breakfast. While she didn't eat very much, she didn't have any pain or leakage upon eating so everyone felt confident that she'd be fine at home.

A little dose of happy upon reading
who sponsored our room.

We hadn't seen what her tummy looked like as her abdomen still had a large surgical dressing that we were to leave on for three days, and we were instructed to have her take it easy for two weeks.  Her head incision had stitches that needed to be removed in two weeks, and we were instructed to keep bacitracin and gauze on it, having her wear a hat when we left the house just to keep it clean. We were also instructed to give her tylenol as needed and also given a stronger painkiller prescription just in case, but when we left she was feeling so great that we were pretty smug with our success and were basically high-fiving each other out to the car.

Olive's scar (December 2016)

As life would have it, the high didn't last too long. Getting her to take tylenol at home was quite an ordeal and about two days after the surgery she started to complain of sharp pain in her abdomen. Her mood soured quickly as she winced and screamed in pain doing any sort of up or down movement. She was also devastated that she couldn't bike or trike or ride her scooter as she couldn't wear a helmet while her stitches were in her head. I repeatedly panicked and convinced myself that she had some kind of surgical site infection when she would scream getting off the couch, and Dain repeatedly talked me down. I also called the surgeon, and he tried to dissuade me from thinking anything of her symptoms. It was obvious to me that there was a large, hard mass under her skin near the surgical site, and I definitely googled the terms "surgical site infection" and "hospital acquired infection" way too many times. By six days out, her surgical site on her abdomen seemed to open up a bit and an alarming amount of fluid was leaking out, causing Olive to scream "It's dripping! It's dripping!" at the top of her lungs. I'd had enough of the worry and took her in to the surgeon's office only to be told that while it was a "superficial surgical site infection," it would heal on its own and we should just let it drain and not give it another worry. Easier to say when it's not your child in pain of course.

The more challenging consequence of the surgery is that it hit Olive hard emotionally. A few days afterwards she looked up at me in the car with her big brown eyes and said, "I miss my tube." Heart broken. Of course. Of course you do, and how have we not explicitly validated those feelings yet? I did right then and there obviously as my mind exploded with the realization that this was way more life changing for her than we anticipated. Her tube was part of her identity as it was all she'd ever known. And it was never a bad thing to her. If anything, it was something special that we all paid a lot of attention to. It was a loss for her, and she was grieving that loss. And her grieving process took a very unexpected turn in that she decided she didn't want to leave the house. The first day I tried to drop her off at school it was so soon after her surgery that when she burst into tears and refused to enter the door, I acquiesced and let her come home. The next week, however, it happened again. And again. And again. And for two weeks I dropped off a kicking and screaming child that I had to forcibly carry to the car, out of the car and into school each and every day and endure the torture of having her scream "mommy! don't leave me!" as her teachers pulled her off of me. The first day I cried too as I walked away from a child trying to figure out her identity without her mom by her side. Thankfully her school and her teachers are amazing, and they graciously dealt with having to carry her around for the beginning of the school day until she calmed down.

Olive loving school again.

It got so bad that upon waking up each morning she would start sobbing about not wanting to go to school, and when school starts at 12:30, that makes for an exhausting morning for everyone involved. We knew we had to power through it though, but I honestly wanted to pull her out of school and put her in a morning program somewhere because it was negatively affecting our lives so much. Luckily we did push through it, making her go to school despite her best efforts. She tried different tactics like hiding in her closet, going in nicely one day only to announce "I'm not staying, guys" and making a run for the door, and, my personal favorite, yelling "It's not safe here!" while her mother carried two hysterical children from the car, completely alarming every child and parent in a two block radius. I was desperate and called a child psychiatrist and made a chart for the fridge in an attempt to blatantly bribe her into going to school with the promise of a pogo stick. That kind of worked. One day I explained to her the easy way to do it, with her calmly getting ready for school and walking in there as Olive the brave, and the hard way to do it, with me putting on her shoes and carrying her in kicking and screaming. I assured her either way we would be going to school, and she looked at me and said, "I choose the hard way." And then ran into her closet to hide. Those few weeks were so tough. I questioned daily whether I was doing the right thing or permanently scarring our child as that line can be amazingly blurry apparently. She didn't even want to go to skating lessons, which she loves. Everything was a battle, and it was hard to watch her struggle.

Heading to the theater for a special date with dad.

I should say that while it sounds harsh to force her to go to school, she was surrounded by love. We did acknowledge her feelings and let her voice her grievances, and thankfully there was a turning point. I don't know what changed in her, but something did. Her teacher reported that two other kids were discussing recent injuries of theirs and Olive chimed in by lifting up her shirt and showing everyone her scar. For whatever reason, that seemed to really help her, along with the subsiding physical pain from the surgery. She did also get that pogo stick, but by then the tide had already ebbed.

"I'm busy drinking my coffee." Note: it's hot cocoa.

With everything going on physically and emotionally, eating was difficult for Olive and a struggle for all of us really. She needs a lot of direction and encouragement to eat still. There are days we see glimmers of hope and days where I'm certain that I'll be texting her in college to ask what she had for breakfast and remind her to drink water. It's a process. Initially she lost a pound but has since gained it back now that she's feeling better. And we are now entering the dreaded cold and flu season, which will likely bring a bevy of setbacks for Olive's appetite and attitude and weight. It seems as if it's always two steps forward, one step back, but life does in fact move on. We didn't really get that moment of catharsis that we anticipated. Maybe it'll hit me in the grocery store in a few months, and you'll pass a woman sobbing holding her carrots that her child can finally skillfully eat. Or maybe it'll be when she goes to kindergarten next year and can eat enough snack and lunch on her own to go an entire school day without our watchful presence. Or maybe it'll never happen as our memories of this soften and our lives move on. What I know for sure is that we have a lot to be thankful for in life. And here's to hoping that maybe next year we won't hit our out-of-pocket maximum for once.

To everyone out there who has loved and supported us along this unexpected journey, we thank you. We couldn't have done this without you, and we wish you and yours a very merry holiday season full of cookies, cocktails and contentment.

This is us.