Everyone has a why. Whether it’s running, or hiking, trails or not. For many the why that started it isn’t the same as the why they still do it today.
For me my why of why I started running is the same as a story many women are stepping forward and sharing. It’s my #metoo. But that’s not why I am here today. It’s not a story I care to retell anymore. I’ve moved on.
Even today my why can change throughout the year. But RIGHT NOW, RIGHT THIS VERY MOMENT, my why is ME. Trail runner, mountain mom – these are the essence of who I AM. But right now, right now I’m the mom of the kid who needs spinal surgery. I’m the mom who doesn’t know when she last washed her hair. I’m the mom who has become better than the care coordinators at the hospital at coordinating care. I’m the mom who can pretty much give you a tour of the entire Children’s Hospital and knows where most every department is – because I take my son to all of them. BUT THIS ISN’T ME
This is not who I am. I hate this. Right now I’m just that mom. Don’t get me wrong, I LOVE being a mom, just not when I have to do this. Not when I have to lose the essence of who I AM so my family is ok.
Right now, my need to run is more important than ever. If I don’t do it now, I feel I will be lost forever. I don’t mean that I’ll die, but that I will lose the essence of who I am. I need the trails to remind me what the earth beneath my feet feels like. I need the wind through the trees to remind me what fresh air moving feels like. I need the birds singing to remind me that hospital monitors are not the song of my life. I need the cold crisp air of the wintery mountains to remind me to breathe it all in. I need the colors of the sun against wilderness to calm my overstimulated mind that is sick of city noises.
I need to run. I need to feel my body do something other than phone calls and paperwork.
I need to run. I need to be hungry for quality food that sustains an active life.
I need to run. I need to be physically tired so my mind can rest.
I need to run. I need to feel the burn in my legs and lungs to remind me I am still very much so alive and not the zombie I feel like.
I need to run. I need to just BE ME, even if only for an hour.
I need to run. I need to run on trails. Because if I don’t I just might lose myself.
Last time we were admitted I meant to share about the aftermath….but I never did because well – life.
Time in the hospital always messes up life. The follow ups, the returning to “normal”, the figuring out where you left off, and the determining if “normal” will even exist again. (Ok it will eventually!)
This time around after we came home I had to coordinate 8 follow up appointments all as soon as possible. But it was Thanksgiving the next week. The way this worked out was that we went home, took a week off from being in the hospital and then ended up back 4 out of 5 days following the holidays!
We had to of course follow up with our regular pediatrician like always after being in the hospital (managed this before holiday at least ). We had to follow up with neurosurgery to figure out a plan of next steps. We had to follow up with urology to make sure we weren’t missing some possible problems the troubles in his spine could cause. This also meant we had to get more imaging done. Then there were some already scheduled follow ups that became even more important, including pulmonology and developmental pediatrics. We had to see a new department to help us continue to coordinate care between so many specialties in hospital called the special care team. And of course had to follow up with therapy (1 appointment at the hospital and several at home).
If you only look at the logistics of what happens after coming home it’s really not that bad. But being in the hospital messes up everyone’s sleep and eating schedule. The dogs were antsy from us being gone and therefore frequently in our faces. Wee man is traumatized and scared to death of sleeping – I believe because of the MRI’s where he had to wake with stranger and no parents. I am exhausted and overwhelmed as I imagine his dad is too. We all wish this was just some bad dream we’d wake up from.
After going through everything my poor wee man needs surgery. It’s big and scary to say your two year old needs surgery on his spinal cord. But I’m doing my best to remember that if all works out the way we hope it will alleviate a ton of pain; which in turn hopefully improve sleep and many other areas of life we struggle. A good majority of this could all be related to these complications with his spinal chord.
Dealing with this around holidays is tricky. I literally forget that a holiday is coming. Plus I’m trying to catch up on my own health and appointments I had to reschedule while we were in the hospital. And of course wee man got a lovely cold and ear infection to top things off. We have to do everything we can to keep his lungs healthy, not just for his general health but also so can actually have the surgery he needs.
So the next month will be a crazy bit of chaos … and then hopefully we’ll return to that “normal” – maybe even improved in areas (sleep I hope). And then we’ll be back in the mountains and off adventuring as much as we can (big plans for the next year ;)). But if you think we’ve vanished, we’re just dealing with this chaos- and yea we probably need help with something (see blog My Guide to Helping Families with a Child in the Hospital).
Before I continue our story I want to share more on how you can help. In the last few years between NICU, RSV/Adenovirus/Pneumonia stay, and this most recent round of hospital time, it has occurred to me most people don’t know how to help.
Most people ask “Let me know if I can do anything”, or “how can I help?”, but when you’re a frazzled parent with a kid in the hospital the answer to these is pretty much always “I don’t know”.
So how can you help and be more specific? (the local list)
1- Provide food!! There are lots of ways to do this. But remember hospital food sucks and is expensive. Ways to provide food vary widely: provide home cooked food, provide gift cards to places near hospital (bonus if they deliver), provide gift card for the REAL coffee place inside the hospital (at Children’s in CO this is Dazbog), pick up groceries, share those extra breakfast burritos you weren’t going to finish (seriously a neighbor did this for us and it provided 4 meals for Dad who was going back and forth). Food needs are just as important if not more so upon return home. We may have a full fridge but everything it has spoiled! My neighbors were awesome and set up a meal train (literally there’s a website called mealtrain.com that sets up the calendar and lets people sign up to bring you food). I had never really heard of this before and it has saved us big time with all our follow ups. Yea we had time to make it to the grocery store but not to actually cook.
2-Watch/care for pets. It’s always hard with a kid in the hospital to make sure your pets are fed and let out. Even if it’s the bare minimum – food, water, toilet – this is a huge help.
3-If the family has other kids, take them somewhere fun that’s not the hospital. Be it a sleepover with your kids, a movie, a park, anything – get them out and playing and show them they are still loved. My son may not have siblings but I do and I watched my cousin’s siblings go through some rough times while she was in the hospital. Getting siblings some fun time makes a world of difference.
4-Clean! One of the oddest things that never crosses my mind until I’m in the midst of it is how much we need a clean home when when get to be home! The piles of laundry, the musty smelling sheets, the filthy floor, the pile of dishes that are weeks old, etc. One neighbor came by while I got wee man down for nap and swept and vacuumed the whole house and finished up dishes I had started. Another neighbor sent over their 2 oldest kids after school and it was awesome. They mopped, cleaned toilets, helped fold laundry, cleaned a nose-print covered window, put away the now clean dishes, demolished my need to shred pile in the shredder, played with the wee man while I did a few chores they couldn’t, wiped down all our door knobs and light switches with disinfectant wipes, and all the while claimed it was more fun than the chores their mom gives them (seriously they are welcome back anytime!).
5- Visit us in the hospital – but bring goodies! What I really mean is we would love to see an adult that isn’t medical personnel, but we would also love a clean set of clothes, a treat for us parents, some socks, maybe a hairbrush and toothbrush. When we were in the hospital during the pneumonia stay our friends brought us one of those cube boxes full. It had a giant stuffed sloth for wee man, some magazines appropriate for both adults and wee man (Nat Geo, a cooking one, and some other adventure one), sweatpants that were big enough to fit either mom or dad, food snacks like apples and clementines, a few books for wee man (favorite is still Never Feed a Yeti Spaghetti), and the best part was the avoCATo fuzzy slippers with grippers on the bottom (still my favorite and I still take them to the hospital). The box itself was also fun and covered in sequence that you can brush with your hand to change how it looks. Super entertaining.
So you’re not local, but want to help? What are other options?
DONATE! There are so many ways to donate that mean a lot to us families with kids in the hospital, even if it never reaches us directly. There is always the option to donate money directly but that’s not the only option.
You can donate food and supplies to programs like There With Care that provide families with food and supplies for their kid. So when we were in the NICU they provided not only weekly bags of food, but a “baby shower in a bag”(bag of items from clothes to toys to blankets and soap etc that one would typically get at their baby shower), a pack of diapers, a NEW car seat, and a NEW pack’n’play!
Children’s Hospitals are always in need of new coloring supplies and non-plush toys. These fill activity rooms and provide entertain for thousands of kids. Some even are gifted to the kids struggling so they have something new and special that is theirs.
Donate time! AKA – volunteer. I don’t think there is ever a shortage of volunteers – either at the hospitals or programs that help with transitions home.
Blood and Plasma! Yes this is life saving! Right now I know our Colorado Children’s Hospitals are in CRITICAL NEED. They need ALL blood types and plasma. 1 blood donation has the potential to help up to 5 children.
And of course FOOD! You don’t need to be local to help with food. Gift cards these days can be sent electronically and a lot of places that deliver can take orders online – so yes someone in Florida can have food delivered to a family in Colorado.
I’m sure there are other ways you can help a family with a child in the hospital. My biggest thing, is don’t ask a vague “how can I help” question. Instead be specific, and volunteer what you can do.
After part one I got a lot of messages! Thank you so much everyone. Many of you stated you hoped things didn’t get worse. Well, from where I sit they didn’t…
We finally got to our MRI slot. I dreaded this. I was scared. I had been holding it together all day and I did end up loosing it. We had to ‘put my son to sleep” leave while he’s with total strangers and not see him until he was stable and awake- so he was going to wake up to complete strangers. Plus he already didn’t feel well and had a shitty day. Yup – this mom bawled her eyes out after leaving him with the MRI team.
My grandpa was on his way home from getting my grandma from the airport so they brought us some real food – this was amazing considering I hadn’t exactly had anything other than that instant oatmeal bowl and a few ER crackers all day.
After a long wait we were able to go back with him. He was completely out of it. The most peaceful, dead weight 2 year old you’ve ever seen. He needed that sleep (even if it was drugged) so badly. And then it was back to our ER room for more hurry up and wait. His dad needed to go home during this time, so I sat and tried to rest with mee man asleep in my arms.
I wasn’t really expecting what came next. A neurosurgeon came in to talk to us. And not about an infection. They found fluid build up in the spinal cord and something with the lower part of his brain. This doctor was honest at least that she really didn’t know what was going on and had to call her boss. The next couple hours included a bunch of confusion and disconnect between the neurosurgery and emergency doctors. We were told at one point if he ate and drank after waking from anesthesia and kept it down we would go home. And momma lion wakes up –
“What about his infection? What happened to the doctor in neurosurgery who had to call her boss? What did he say? What is wrong with my son?”
After asking a nurse 1001 questions we finally got both doctors back in and things sorted out. There was no way a kid who had spent 19+ hours in the emergency department in pain so bad he was either screaming or zoning out, needed to be transferred from another hospital by ambulance, have an emergent sedated MRI was going home.
It would be after 1 am before we got a room, but we finally were going to at least get some pain management and have a conversation the attending neurosurgeon and get a better idea of what was going on.
We spent a lot of time over the next several days trying to entertain a bored, trapped inside 2 year old while trying to keep his pain managed and figure out a pain plan that would work at home. During that time we spent a lot of time going back and forth with doctors who were going back and forth with other doctors trying to figure out what needed to be done and what was wrong. We ended up also doing ANOTHER MRI, this time of his brain, to get a better picture of what was going on.
At this point looking back, a lot of this is a blur. But here’s what we left with:
-Having spent 6 days in the hospital
-A diagnosis of hydromyelia (fluid in spinal cord), mild ventricularmeglia (mild fluid build up in brain), mild cerebral tonsillar ectopia/herniation (brain sitting too low on spine), suspected tethered spinal cord, and possible neurogenic bladder (bladder that doesn’t work quite right). That’s a lot.
-The need to coordinate 8, yes EIGHT, follow up appointments all to be done by the end of the first week of December.
-Knowing we man is probably going to be needing surgery in the very near future.
I re-shared my last minute list from last year- but here’s one now that I have a toddler!
Base Layers!! Both mom and kids need them to stay warm during winter activities. They are also great for sleeping in on chilly summer nights. I love merino wool!
For mom I highly recommend the Kari Traa brand. They are made for women by women. The Rose set is their most popular and I love the pants! Just size up 1 size as these are thicker and don’t stretch like their others. I also have the Tikse bottoms which are thinner and paneled for when you are more active.
Wee man has 1 wool set by Simply Merino Kids and 1 polyester set by Odlo. I bought his current size in both and they fit well enough to wear now but should also last through next season too! If your kids hate tags just gently use a seam ripper to remove them and you are good to go!
And for proper wool care I highly recommend this wool wash by The Laundress!
SOCKS!! These will always be on my lists!
I still say Swiftwick for mom! This year they have their Vision FIVE socks in merino wool with some awesome winter designs! I’m totally rockin a pair and would love another! (wink wink) I get mine from my local running store RunnersRoostLakewood.com but they are available lots of places online too.
For wee man he needed warmer socks than just our standard what can we find at Target this year. @wasatchwildchild on IG recommended these by HowJoJo off Amazon. They are a wool blend, cheap enough to justify for a toddler, and keep wee man’s feet nice and toasty but not too sweaty. Only downside is they are a bit slippery with no grippers but he usually is wearing them with shoes.
Sunglasses! Well for mom at least (wee man never leaves his on)! Goodrs….
Not going to lie I used to HATE these….but they’ve grown on me. I have a pair from when the company very first started-they have been used as a teether, a baby toy, and have lots of scratches. The one thing I’ve always loved is the texture of the frames. I also keep my originals in my car as backups. I love that with them on I can still see my son in his car seat via the rear view mirror via the car seat mirror. Many other sunglasses block too much light for this. I also just got myself two more pairs! With their ever expanding collection of crazy colors and patterns I found one pair for night driving to cut the glare and one pair for indoor wear when I have a migraine. And then I found this cool pair that will be gifted to my Goodr lovin friend (I’m sure she knows who she is if she reads this but I couldn’t resist sharing because they match my socks above!). Of course I get these from my local running store – but they can also be found on their website Goodr.com.
Mittens – both my hands and wee man’s hands never seem to be warm….that is until I found these!!
Swany Toasters for mom. These have light gloves inside hefty mittens. You can unzip the mitten and get your whole hand out to use your fingers for fine things (zippers for one) and to use your phone. The touchscreen friendly finger tips REALLY DO WORK on these.
Polarin O.Pyret makes 100% merino wool mittens for babies and kids. They are double layered too. Wee man’s hands never get cold in these and they are super soft. Definitely use wool wash mentioned above. They will shrink on first wash but are true to size. If he wants to play in the snow or it’s going to be rainy – just put snow or rain mittens on top!
You can also always gift an REI Co-Op membership. It’s $20 ONE TIME and it’s good for life. This gives special access to sales, 365 day returns, and even dividends on full priced items!
Those are my top picks this year! Always will be more to come and many of these will always carry over year to year, so check out last year’s list too.
We didn’t fall off the face of the earth….but sadly we didn’t vanish because we were on some epic mountain adventure.
Quite the opposite. Spent the week living at Children’s Hospital. A place very quickly becoming another home away from home.
Friday afternoon wee man spiked a fever and started complaining about pain. He was falling asleep very unusually and randomly. By midnight he had hit 104 and by 4 am his pain was specifically in his back and by 5:39 am we were in the ER.
I quickly learned that back pain in young kids is the equivalent of chest pain in adults. It is not normal or good and often signals something truly wrong. Trying to be as nice as one can to a two year old while hunting down the cause we started by ruling out things that were simple to test for and treat – UTI and reoccurring pneumonia. Of course it wasn’t either of these. I’ve never seen a doctor so disappointed in negative test results.
My wee man was clearly in pain. He didn’t really want to move or play. He was still falling asleep randomly. At this point the doctor was very concerned about something rarely seen and often overlooked- an infection in the spine somewhere. You see all we know is his back hurts and he had a pretty reasonably high fever. He’s two – he’s not capable of telling us more specifically where it hurts. The fact that he’s narrowed it down to his back in and of itself is a really frickin big deal! We are talking about a kid who never complains about pain (even when he should).
So onto blood work. Cultures take 24-48 hrs to grow but could help narrow down the type of infection. CBC and CRP (C-Reactive Protein, an inflammatory marker) can give an answer to immediate severity of infection or even potentially rule it out. Well it didn’t. They were both elevated – a lot.
Insert here a freaking out mom’s rant about hand washing and kissing kids:
At this point we now know a whopping two things – he definitely has an infection and his back hurts. It’s determined that to get proper care he needs to be transferred to a different hospital. We went to our closest Children’s Hospital but they are much smaller than the main campus. With his pain and safety concerns (potential for ripping out his IV) we made the decision to transport by ambulance.
At this point I feel like full on crazy secretary mode. His dad is out hunting, and though I’ve sent text updates I know he hasn’t received any of them, so I’m frantically trying to figure out how to reach him. At the same time I need my car to somehow make it to the different hospital. Oh and I forgot to eat breakfast – so getting that squeezed in is a must too. Luckily I thought to grab an instant oatmeal cup. I was also smart in the fact that I thought to pack a bag of basics….after all last time we ended up at the ER we were admitted.
Paramedics arrive – did you know they use car seats in ambulances whenever possible? I didn’t! They strap the car seat onto the gurney just like you would in your car using the seat belt installation method. I felt bad – I kept having to leave my son alone with strangers (nurses and hospital staff perfectly capable of watching him) while I ran back and forth to the car getting what we needed. At least I was able to grab his favorite car blanket and a couple of his toys.
I fully expected him to scream throughout the ambulance ride. Boy was I wrong. He thought it was awesome! They gave him a stuffed tiger (he got 2 just on this day!) and loved that he could easily see out the back windows of the rig. He could see some airplanes in the sky and there was another ambulance going to the same place behind us, which he thought was super cool to watch.
Somewhere in this chaos I managed to mass message my whole neighborhood looking for help, tell my mom, my grandparents, his dad’s mom, and our friend his dad was hunting with. Between everyone people teamed up to get my car to me at the main Children’s Hospital and get his dad on the phone with me and send him home from his hunting trip (which sucks).
Getting to the main hospital was a hurry up and wait game. We reviewed everything that had happened so far with the doctors there and determined they still agrees with the other doctor’s thoughts. Wee man needed an MRI. At his age it is impossible to sit perfectly still for 40-60 min so an MRI has to be sedated. This also means getting it scheduled requires 5x the amount of people. And because we didn’t know what was causing the infection they didn’t want to treat it until we had a better idea. So we spent several hours waiting…waiting for Dad to get there, waiting for my friends to arrive with my car, waiting for our slot to get him an MRI, waiting for potential answers. Waiting = lots of movies….or I should say lots of watching the same 3 movies over and over (Minions, Despicable Me 3, and Cars 3).
Did you know approximately 1 in 10 babies is born too early (before 37 weeks)- just in the US?!
Did you know that being born too soon puts the child at risk for more health conditions than you can possibly count – from heart and lung issues to mental and learning disabilities to issues with learning how to walk or eat and everything in between?
Did you know there are babies who are born weighing less than two pounds?
Did you also know that if you’ve met my son, you’ve met one of these babies?
That’s right. My wee man was born weighing a whopping 940 grams at 26 weeks and 5 days. I learned pretty much everything I now know about preterm labor and NICUs and preemies while I was going through it. I was told I was at risk for preterm labor but no one really ever explained what this really meant.
And sure enough my wee man came early- but not for any of the reasons I was at risk. In other words we still don’t know why and many parents never do.
So why talk about this? It’s scary and many never need to know this information.
That’s exactly why. It’s SCARY AS FUCK and those of us who do need to know wish we did before it was happening.
I wish I knew more before it was happening so I could make better decisions (yea I know I did the best I could). I wish I knew before so I wasn’t trying to have to make these crazy important decisions about my child’s life while I was delirious and drugged and in pain. Or over the phone when I got a call from the NICU and wasn’t there to be with my baby. Or while I found myself in the OR at a different hospital than my baby.
I wish I knew before I was handed a breast pump before meeting my child. Or before I basically made the decision to live in the hospital.
There is nothing easy about having a preemie. And No DEAR – no matter how miserable you feel while pregnant it is NOT worth having your baby early. So I hope some of this can help someone.
Thanks March of Dimes, NICU Helping Hands, Hand to Hold, Grahams Foundation, and all our doctors, nurses, and therapists that have gotten us here today.
Ambitious. Badass. I was ready – more than ready – mentally.
up to the trip I had pneumonia. While I recovered fully and was cleared
for the trip it stalled training a good few weeks.
to say things did not go to plan. By 1.5 miles I was needing to stop,
drop water weight, shift some things around, and change how I was
carrying my son.
mile 2.something I was replanting in my head my whole trip. I knew for
day one I had to get to the river so I had a water source. But from
there I could make base camp, hang out a day or two then continue with a
shorter route, or even head back home – I just had to have water to
make it the night.
Somewhere in there my son wanted to walk so I ditched my poles
and his carrier and packed them up. It was actually easier for me to go
slower and give him my hands to hold. He walked a good 2 miles of
technical terrain with my help. I was so proud.
that’s his max. He can’t do more than that. He started walking like he
was drunk. He was so tired. I tried to carry him some more but realized I
really couldn’t do that anymore. I was somewhere between 3.5 and 4
miles in. Still 4-5 miles from camp by the river. There was NO WAY. I
made the hardest call I’ve ever made – for someone to come help me pack
back out because I couldn’t make it back to the car and I didn’t have
enough water to stay put.
I cried. I’ve never made that call.
I failed, was all I could think. Not the weather turned. Not my son wasn’t handling it. Me, I, I failed. Or so I thought.
It was the right decision. My man ran in and helped me pack
out. Believe it or not this was our first real hike as a family! My man
and I haven’t hiked together since one of our first dates! And you know
what – it was awesome.
ground fell out from underneath me at one point and I landed hard on
one leg. I remember ahead of the trip people kept asking, well, what if
she falls with her kid – well what if? Quite simply I land in whatever
way necessary to protect my son. I’ve fallen 4 times with him at this
point and he’s never touched the ground. Some call it Mother’s instinct
but I call it practice (martial arts is the best way to learn how to
Anyways, I had literally spent all morning concocting
alternative plans. Options that would be more doable, but in the end I
just couldn’t. That just sucked.
Leaving for CA and then turning around 5 days after we get back to CO we leave for the backpacking trip.
A lot of the clothes and daily items I need to take backpacking I also need to take to CA. So what do I do about being prepared?
I layout – take a picture- and put it away. LOL This seems so wrong.
But here are some of the pictures:
and also, why am I packing winter clothes?! Well you see this? This is a
photo of the wilderness area we’ll be in completely engulfed in clouds,
while my friend joked about needing to be prepared for a hurricane. Oh
yea and mid June here in CO and mountain areas got 10-20” of SNOW!!
Therefore, we shall be prepared for everything from sun to snow! This is
weather in Colorado, extraordinarily crazy and beautiful.
Anyone who knows anything about fires, especially in the Rocky Mountains, has heard of the Hayman Fire.
8, 2002 the fire was started due to negligence by none other than a
ranger. It burned 138,114 acres and there were 6 fatalities, making it
the largest fire in Colorado’s history still to this day. I was 8 years
old and remember it vividly. Many of my friends were evacuated. My
family built houses extremely near the fire. Even “in town” the smoke
visited the area several times of the course of the last 17 years since
the fire blazed. The last time I multi-day tripped through Lost Creek
Wilderness I was in part of the burn area. It’s the driest area of an
entire wilderness that is mostly full of water. Last time I was there
was 14 years after the fire and the new trees were only 3-4 feet tall.
Take that in for a minute. At elevation, AFTER FOURTEEN YEARS, trees are only a few feet tall!
burn area is still full of many of the trees that burned. Many have
fallen in storms, many remain standing dead as lighting rods. The only
other thing in the area is large granite formations. They are gorgeous,
don’t get me wrong, but also spooky.
see big cats live there. One of two mountain creatures I’m truly afraid
of. The last time I was in the area there was cat scat on the trail,
fresh, and a looming storm. It was dead silent. No birds chirping, no
squirrels bickering, no hawks screeching…NOTHING…not even a breeze. I
found myself in the midst of what became a massive thunderstorm and the
only place for shelter is where the cats live…and I knew for sure one
was in the area- probably watching me.
about it gives me the creeps. This year I will be spending a lot more
time in the burn area. At lower elevations you almost can’t see the
remnants of the fire and it’s not really that big a deal. At higher
elevation it’s definitely still noticeable and I’ll have my precious wee
man with me.
as creepy as it was, I keep hoping those days will be sunny and full
chirping birds and bickering squirrels and go on knowing I will just
have to face that fear…again.