Not Again…Part 2

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.

More to come…

The day we got to go home we happened to have an OT appointment scheduled in the sensory gym. It wasn’t the greatest session but we at least got to let him play and have some entertainment before the long drive home. Plus I got proof Daddy fits in the “house” wee man loves to hide in at therapy.

Not Again… Part 1

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.

Wee man kept falling asleep very randomly. Anyone who know him knows he normally take extreme measures of convincing to sleep at all.

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:

WASH YOUR DAMN HANDS (and your phones- seriously). DON’T KISS THE KIDS! This includes extended family unless you have permission. Teach your kids these basics too! Don’t hug and kiss others without permission – this also teaches them to respect boundaries! Teach your kids to wash their hands! It’s a fairly simple thing that can be fun. Soap and water doesn’t work – try hand sanitizer! There are actually studies that kids do a better job washing their hands with it anyways. But my point is still the same: WASH YOUR HANDS AND DON’T KISS PEOPLE!

-Frustrated Mom

Anyways….

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.

How cool to be able to see out the back windows so well?! And yes – definitely brought his weighted blanket in the ambulance! Thanks AMR EMS and Paramedics for the safe ride.

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).

To be continued….

November is Prematurity Awareness Month

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?

My son the day he was born. Yes he’s wrapped in Saran Wrap – it helps maintain his heat. And his eyes are covered to protect them from the light.

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.

This is an XXS Preemie diaper – it’s smaller than an expo marker but was still too big for my son.

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.

Depending on their child’s health many parents wait days, weeks, or even months just to hold their child for the first time. I was lucky and only waited 7 days but they were the longest 7 days of my life.

So why talk about this? It’s scary and many never need to know this information.

My son’s first bath. We kept him swaddled so he wouldn’t get cold. He’s still so small he fits in a “puke” bucket.
My son was almost 2 mo this old before he wore his first clothes. Even preemie sized was too big.

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.

Once he could regulate his temperature enough to not need to stay enclosed he got to see a mobile. He was very fascinated.

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.

Going home! Depending on your baby’s weight you have to get a smaller car seat or even car bed to accommodate their tiny size.
These days he’s a mostly healthy, super active, always exploring 2 year old.

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.

Carbon Valley Half Marathon- The After

Words. Sometimes there are none; sometimes there’s too many

I just ran the Carbon Valley Half Marathon for Autism while pushing my wee man. I carried with me names of others with autism for each mile. And your damn right I finished.

Honestly I can’t believe I didn’t cry when I crossed that finish line – probably because I was so pissed to be finishing with 2 flat tires (aka unable to sprint to finish). This race meant SO much to me!!

It was my:

-First official half Marathon

-First stroller race

-First race since son was born

-First race since Leadville DNF (2016)

-Longest run since son born

-Longest stroller run

That’s a lot! A lot to be grateful for. 13.1 miles 2 hours 20 minutes and 13 seconds of grateful. The course is relatively flat: 11 miles of steady climbing and 2 miles to finish. The course is over 50% “smooth” dirt and some pavement.

I went in with a ‘goal’ of averaging about a 10 min mile

Miles run for:

.1 Kyle (my Son’s Father and my Boyfriend)

13 Myself

12 Edan

11 Hunter

10 Annabeth

9 Tedy

8 Silas

7 Atlas

6 Avi

5 Bayla

4 Jack

3 Tyler Jr

2 Jasper

1 Edan (to help me start and finish!)

I am so grateful to have been able to participate in this event. It was so special to me and to share with friends whose hearts it is also very close too. For some awesome shorts of the race and I go check out their YouTube from after the races. https://m.youtube.com/watch?v=1kI-gU30PgU&feature=youtu.be

Nightmare Come True (Part 4 and Final)

A temporary sigh of relief!

The breathing treatment worked and his stats are improving. He still requires high amounts of oxygen support but for the moment we are ok.

We still don’t know on the blood work. If it comes back not so great we are still getting transferred. If his breathing worsens again we are still looking at high flow and transferring.

I feel as if we are holding our breathe yet trying to breathe for him at the same time. Have you ever seen an over active 18 month old just roll over and pass out in the middle of the day while in the middle of conversation? …. I have. It’s scary.

Glowing toe! Pulse/ox

Still small enough for leg cuffs for blood pressure checks

…….

The hours tick by. He’s still doing relatively ok.

Finally the answer to blood work…. it’s normal. Thank goodness. For now we get stay put.

Goals

-get oxygen down to 1/2 liter or none

-get fever gone

-get the wee man to drink enough fluids to not require an IV

-no longer require the hospital grade suction from the wall – aka manage with a nose frida or a bulb syringe

…..

How to entertain an 18 month old in isolation- wagon rides back and forth in the room

Surprise visitors brought a wee man sized sloth!

Oxygen lasso while we test no O2 while awake

“If I can’t go outside can I at least look?!”

A couple surprise visits (including his primary NICU nurse) and a few days of lots of work and more breathing treatments we managed all the goals and got to home.

EZPap – not quite CPAP but similar. For a few minutes every few hours it forces air into the lungs to make them open and not close all the way when you breathe out …. and yea they hate this

Going the distance…with an infant?! (Originally posted on AllWomenAllTrails.com)

I often get double checked on my distance when sharing my adventures with my son.

With my upcoming backpacking trip people keep asking how far I think we’ll go each day. And then their jaw drops to the floor when I answer 12-15 miles.

Most people don’t realize my background. I’m an ultra distance trail runner. That means I run further than 26.2 miles at a time on mountain trails. I’ve been doing this for years.

Me running in the Leadville Silver Rush 50 mile run

My last multi day trip was 155 miles in 3 days. The longest day was 55 miles. That’s all carrying about 30lbs dry weight (not counting water weight). So when you compare that to miles carrying weight and sometimes a kid that’s not too bad.

We’ve also been hiking together since he was a few months old; working on building my strength carrying him and his tolerance to altitude. So far our longest single day hike (leaving after breakfast and being home before dinner) was 12.34 miles and gaining about 2300 feet in elevation.

First overnight with the wee man. This pack doesn’t fit right and made for some rough times.

So when I say for a multi day trip I think we can do 12-15 miles each day, I’m not joking. If you break it down. 12 miles per day at 2 miles per hour (30 min mile) is only 6 hours of hiking. That means more than enough time for lunch and breaks and naps and never rushing out of camp in the morning. We’ll be going in July when sunrise is before 6 am and sunset isn’t until well after 8 pm. This leaves more than enough time to have daylight for all activities without setting up or taking down camp in the dark.

Another consideration is that my last multi day trip was in the same area. We’ve also done lots of day hikes in the area. I’ve hiked every single mile of trail in the wilderness area we are going. So while I don’t have our exact route planned yet, I know the area very well.

I know many people think I’m crazy and that’s ok! It’s crazy fun and I love it.

Memories from my last multi day trip in the area we’re going. This was about 5 pm after a day of torrential rains.

First overnight with wee man. So peaceful once I got him down to sleep. We share a double sleeping bag.

Nightmare Come True (Part 3 of however many more it takes to tell the story)

Reality check. Nightmare was just beginning.

Second night in the hospital and little man’s oxygen stats drop and drop and don’t come back up. And this is already after having to wake him to get him a new IV.

We try increasing oxygen again and again and again but nothing, no improvement.

Doctor has been called and now we’re having the discussion about what happens next. About returning to high flow oxygen (oxygen with some pressure to help force lungs open), about being transferred to the main hospital, about going to ICU. Those three letters. The real nightmare. The fact we even have to discuss it is anything but ok.

……….

We have one more thing to try. If it doesn’t work – high flow. Also a blood test to see how his body is reacting. There’s a point at which the body reaches a guarantee it will need more support even if it is ok now. If this test shows he’s reached that point, even if we get him breathing better we will be transferred.

Holding our breathe.

Last attempt at a breathing treatment works. His stats start coming up. He’s still requiring extra oxygen but we’re ok for now.

Still holding our breathe on the blood test. We still don’t know if we’re really improving or if this is temporary.

To be continued…

Nightmare Come True (Part 2 of 3 … well maybe 4)

We didn’t make it to the next day.

Instead we ended up rushing ourselves to the closest Children’s Hospital ER. Not going to lie….I was flying through a construction zone at night. My little man could barely breathe and it sure as heck wasn’t getting better with the home medication.

It felt like forever getting into a room, waiting for a doctor. Sitting there and the monitor says he’s getting enough oxygen but I just know something isn’t right and he really can’t breathe.

FINALLY a doctor … and thank goodness she ordered an x-Ray of his lungs.

Pneumonia…

Black is air. White is bone or fluid

Damn that sucks. His lungs really aren’t up for tackling that.

At first the conversation was going home with antibiotics. The more we talked and the doctor got the full story, the more it became obvious he needed to stay.

At this point he’d have a fever for 14 days!!! He’s also not eating or drinking which means he’s getting more and more dehydrated every minute. Plus he’s a preemie – it doesn’t take much for things to go from bad to deadly.

A while back I shared a friends blog about how couldn’t go back. ( https://www.lifeafteryou.org/home/on-the-other-side-of-the-sanitizer ) That’s exactly what we’re doing. We’re going back. Back to living in a tiny room hooked up to cords and wires and oxygen.

For me this is more than just being in the hospital with my very sick son. This is reliving the NICU.

We make it through that night. Antibiotics and IV fluids started. Trust me when I say no on e wants to pin their child down for the things that you need to do to make them well….IVs, nasal suction, breathing treatments, etc.

The next day was another test. This time they swab is nose and send it off to see what grows. Tests for all sorts of viruses including the different flu strains and also a couple rare bacteria.

Comes back positive for RSV and Adenovirus. Both respiratory viruses that are extremely dangerous to those with weaker lungs and compromised immune systems. Both of which my preemie son have. RSV is so scary for preemies it’s literally something there’s extra precautions for and the main reason we keep our littles in bubbles and act like hermits when we get out of NICU. It can very easily kill a compromised child.

This….this is a preemie Mom’s nightmare.

To be continued…

Nightmare Come True (Part 1 of 2 maybe 3)

I’ve spent a lot time thinking and rewriting how I would share about this. How I would share about a nightmare come true. I wrote a draft basically telling everyone to F***ing wash their hands and cover their mouths. I wrote a draft that probably was a wee be too sciency for most.

Today we are home! Those words. We’ve said them before coming home from NICU. Doing a happy dance (yes literally) when we got told we’re going home.

Thank you Peanuts for teaching us how to Happy Dance

Yesterday we did that happy dance all over again.

On Valentine’s Day I got a call from my wee man’s child care provider he had a low fever and wouldn’t stop crying. After 6 days of a yo-yo fever and no other obvious symptoms I took him in to get checked out. Strep and flu negative but a bit of a red throat. Aka – no big deal probably just a little cold give it a few more days.

Sick and stealing cookies… can’t be that bad?

Next day urine reaks…I’m talking his pee only diaper smelled like the worst poopy one he’s had… REAKS. Ok so it must be a UTI.

Nope. Culture comes back negative and now he has a cough. 24 hours after cough develops its way worse and now sounds like wheezing too. To the ER

“Sounds like croup.” Treat for croup – responds – pediatrician agrees the following day.

In ER and yet he’s smiling

Now it’s Wednesday. Night before had been up and down. Morning ok. After nap little man sounds horrible. I’m thinking it’s the strider (sounds kinda like wheezing but more high pitched sound that comes with croup). Hot shower….still just standing there looking at me like he can barely breathe.

Pediatrician has an immediate opening so we head there and find out he’s actually wheezing. Thinking it’s just the virus effects on his preemie lungs. He responds to a couple nebulizer treatments and sounds and looks better. So we go home with the same medication for over night with plans to re-assess the following day.

Nebulizer at pediatrician
Playing while waiting to see if meds helped

Suction machine at pediatrician

Mom I don’t feel good

We never made it to the following day.

To be continued…

Another and Another: the ever growing list of therapists

This one is for all the special needs mommas (and daddy’s) out there.

When you have a kid you never think of needing any sort of therapy for the child in their first few years of life. Yea maybe when they’re older they’ll fall and break and ankle and need a little physical therapy after. But that’s really all you consider.

When you’re told you’re at risk for pre-term labor, no one tells you ANYTHING about what that really means.

When you’re in the NICU they kinda mention you might need to continue therapy outside the hospital. They mention that maybe in a few years some disabilities might appear.

But no one tells you of the reality.

In NICU therapy is often just the simplest thing such as touch

Therapy starts in the hospital. Then again as soon as you can manage to set up services when you get home.

We started with just occupational therapy (OT). Then a few months in it became apparent that more help was needed. So add an early childhood education specialist (ECSE).

Working with our first home OT on tummy time that works with reflux

Now it’s being noticed that major motor skills are lagging and uneven. While OT can work on this, she really needs to focus on sensory issues and fine motor skills. So add physical therapy (PT).

As we keep working on eating more solid foods we’re struggling with allergies and sensitivities along with simply getting enough calories from solids so we could wean. Now we not only need to see an allergist we add a pediatric dietician.

Working on being ok with new textures in the mouth

So now we have four different specialties coming to our home. Some weekly, some every other and some sporadically.

We’ve finally got a kid who’s doing great in major motor skills- walking and just about running. But his verbal vocabulary is almost non existent. No “momma” “dadda” here. Though we know he can. He likes to tell the dogs to “sit” ( which more often sounds like shit 😂) and I’m pretty sure he’s trying to say “this”. He communicates- just not with words. So here comes speech therapy.

And all the while we’re on a waiting list to see a specialty team that works with children with developmental struggles. Who knows how long that will be or what other list of therapists they will have to add. (Are there even anymore specialties???)

Oh and nope we haven’t hit that few years mark. This all before the age of 2.

So to all you others wondering how to do it. Hang in there. You’re not alone.

One more for cuteness. Working on balance with PT