Life After the NICU: A Different Kind of Hard

Just a few short weeks after we started dating, Kyle and I had the opportunity to climb our first mountain together. We and six friends went to Peru during our winter break of our second year of grad school. As part of the trip, we did the four-day Inca Trail hike to Machu Picchu. Because I decided to go just a couple of weeks before the trip that came just after finals and then the holidays, I didn’t do a lot of research before we left. I read a few reviews of the hike and basically took away that it was four days to walk a scenic 26 miles.

The reviews were right; the walk is one of the most amazing 26 miles you could see. There is a dessert, lush rainforests, gorgeous mountains sitting in the clouds and really impressive ruins scattered throughout the trail. However, the reviews that I saw left out a few details – important details. For instance it would have been nice to understand that on day two you start out at approximately 10,000 feet and by lunchtime you’re at 14,000 feet where you summit a peak that is aptly named Dead Woman’s Pass.

One of the most frustrating parts of that long morning was the switchbacks. Each time we felt like we’d reached the top we’d turn the corner only see another one and that next one was harder than the last because fatigue started to set. As the day wore on, we started breaking the switchbacks into even smaller goals. “Let’s go 100 steps and then we can stop for a drink of water” after some time we cut the goals back to 50 and, I think, we ended at 25 steps between each break. With each step forward, we got closer to the peak and finally…mercifully…we made it.

Kyle and Tatum at Dead Women’s Pass, Inca Trail, Peru. January 2005.

The proud smiles on Kyle’s and my face say it all. We’d reached a goal. THE milestone. It’s all downhill from here baby!

This picture on the mountain peak in the Andes, reminds me a lot of another time that Kyle and I reached a peak together, this time with Owen.

Owen’s NICU discharge. October 19, 2011.

In both cases, we underestimated the rest of the journey. After lunch that day on the Inca Trail, we started to head down the mountains. We learned really quickly that the burn of climbing up is just a different type of pain than the bone grinding steps as we navigated down. And then it started to rain so the rocks that we were descending were slippery and fog set in so we couldn’t see very far in front of us. Painstakingly, we worked our way down the mountain and finally arrived at our campsite for the night. Dinner was very quiet that night. After eating, we crawled into a stinky tent and wearily joked that the $2000 fine for needing a helicopter down didn’t seem that outrageous anymore. It was a little depressing to know that we still had so far to go. Did we have the stamina?

As I think about the last 14 months (Today!) with Owen, I sort of feel like today we are somewhere on that day two descent. I’m no longer tired from being up all hours of the night to shut off alarms or run feedings every three hours. I do still have to feed him at Midnight, so the nights are late, but I’m also not typically up before 7:30 and some days it’s even later. Feedings have cut from 8 times to 5 times per day, the meds have gone from 15 to 5. Life really is getting easier, we are going downhill.

AND, like on the Inca trail, going down hasn’t been as easy as we imagined. We are fatigued. In the last 14 months, I’ve had one 24 hour break from Owen. I was sick and couldn’t go to the NICU, so it wasn’t a very relaxing break. Like the Inca trail, we are in the fog and can’t see very far ahead. I don’t know what Owen’s outcomes will be, I don’t know if Owen’s going to have an asthma flare up tomorrow, I don’t know what will happen to my career when Owen’s in a place that allows me to return and for once in my life, I don’t even know what I want my career to be. Like climbing down from Dead Woman’s Pass, there are still a lot of aches and pains…why is scheduling a healthcare appointment so difficult? Why does it take so long to get into a feeding clinic? I’m watching my son go backwards and don’t know how to help him and nearly had to beg to get someone to refer us to a feeding clinic and now we wait. Oxygen cords, thank you for what you do for my son, but I HATE you – truly viscerally despise you. I’m sick of tripping over you, getting you caught on everything in the path, carrying the tank everywhere we go. There is no popping into a store, everything is harder. Monitor, thank goodness you are in a padded case or I’d surely have broken my hand several times in aggression towards you. The inhaler to help his breathing makes him constipated and being constipated makes his breathing worse – medication vicious cycles are awesome [sarcasm intended]. We are financially in a much better place than many families going through similar situations, but we did unexpectedly give up half of our income. Our mortgage is a reflection of two incomes and can’t be changed since we bought our house in 2006 and owe much more than the home is worth; our student loans are a reflection of two people with expensive graduate degrees. Each month the savings account gets smaller and is a reminder that eventually, something has to change. Right now we have the luxury to do what we feel is best for our children, but we know that it’s not possible to maintain forever and being in the fog of unknowns makes that a little more daunting to navigate.

This last paragraph isn’t meant as a complaint. It’s really just an assessment. A reminder to us that fatigue is very reasonable and we need to let ourselves feel it sometimes. Unlike the Inca Trail, this is not a four-day journey. There is no powering through this fatigue. Yes, at moments, sometimes 14-month-long moments, powering through is necessary but it’s our job to notice the difference.

Slowly, in this healthy stretch, we are starting to make changes that will help us have the stamina to get through the rest of the journey. Owen now naps in his room two one-hour sessions per day. I get one of those hours to myself and Kellen gets me the other hour. That sounds ridiculous to be a new thing, but if you saw the process of getting him and all his stuff upstairs and then back down, and then throw in that I was constantly watching how he was breathing (monitors tell you when it’s too late, you really need to watch his breathing to know if he’s working too hard) you’d understand why it took this long to get here. Also, Kyle now gets about one hour extra in the office because he’s not doing drop off and pick up. That’s one extra hour that he can use to relax when he’s at home at night. In addition to making daily shifts to our schedule, we’re also starting to make plans to see friends. I may even use up some of Kyle’s airline miles and get on a plane a time or two over the next several months. Hopefully, he will come with me on one of those trips.

I’m sure many of you are saying, “about time” or “duh, how long have we been telling you this” and believe me, we weren’t blind to the fact that we needed a break. But the other facts are we weren’t ready; Owen was really unstable for much of the winter. Leaving him with someone else for longer than a couple of hours was a terrifying thought, for us and the other party. The last two times Owen was hospitalized, both were nearly 911 calls. Even with all the equipment and knowledge that we have and our ability to catch signs early, we were in very scary situations. His respiratory distress often is sudden and severe. Leaving him with someone without the same comfort and knowledge, wasn’t about us not being willing to take breaks. It was about Owen’s safety.

However, like that second half of the second day on the Inca trail, I feel that stinky tent [3+ star hotel please] getting closer. Going down hasn’t been as easy as we imagined, we have weathered plenty of rain and slippery rocks but in this current clearing, we are enjoying some breaks so we can prepare ourselves for the jungles and rocky terrain of day three. At the end of day three, there will be showers and toilets that flush and then day four is a few hour walk with one steep (seriously it’s straight up and down) wall to climb just before you walk out on top of Machu Picchu. It is a true wonder of the world sitting up in the clouds. I know what’s ahead of me isn’t easy, but I also know that not only the end, but also the journey, is beautiful and amazing and so well worth it. Like in the Inca trail, we have each other and a great supporting cast. And like Machu Picchu, I believe if you got there by train instead of trail, that beauty and wonder will be amazing, but maybe not quite as sweet. Unlike the Inca Trail, there won’t be a clear end that startles us with its beauty, but I am pretty sure, if we watch closely, we’ll see it.


© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

6 thoughts on “Life After the NICU: A Different Kind of Hard

  1. Great Post Tatum:)
    You truly amaze and inspire me with every post and every emotion that you share.
    Chad and I are so blessed to have met the both of you and becasue part of the extended support. I know that we have not been around alot, but again I remind you that we are here to help or listen.

    Oh and hopefully spend a few days of R & R by the pool in palm springs!

  2. Wow, this post brings back some memories! Who would of known how the trials of that journey would prepare you and Kyle for the future. BUT don’t forget between the painful climbs and decents great friendships were formed and good times were also had and those are also things you will have the rest of your life.

  3. Absolutely, Leslie – the hardships of that climb are far eclipsed by the amazing memories and relationships built. I’d do it again, even 7.5 years older and that much more out of shape!

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