Kyra's Birth

 

I wanted to try to write up Kyra's birth story before I forgot any of the little details.
Most of you probably know a lot of them but for my memory sake I will reiterate so feel free to skip around.


I went into pre-term labor with Kyra at 33 weeks. I was sitting in church and Garth didn't believe I was contracting. I tried to give it a couple hours but finally I told him we needed to go in to be safe. So we went in and sure enough my contractions were good and strong 2 minutes apart and had been for hours. I was 2cm dilated and 60% effaced. And all of the tests they did to test for the possibility of labor came back positive so I was forced to stay. I was then put on modified bed rest and medicine to stop the contractions.
I took the medicine as sparingly as possible. It gave me hot flashes and causes swelling and rapid weight gain. I also don't like being on medicine pregnant AT ALL. So I only took it after I had exhausted all other methods of stopping the contractions.
I went off the medicine on Thanksgiving and black Friday I had contractions all night long 2-3 minutes apart that never progressed.
This became my new normal. Prodromal labor about 3-5 nights a week that started almost like clockwork between 7-8pm every single night. Hard contractions 2-3 minutes apart for hours and hours on end. Sometimes they would make me go into the hospital to check baby girl. Other times I would just do my best to get any amount of sleep.
By 38 weeks my doctor said my baby was still not engaging and I wasn't progressing at all despite my body trying. It is common after being on the meds for pre term labor that your body struggles to get it going again. He offered to induce me and I was shocked.
I had specifically sought out a doctor who I knew would never ever induce me unless necessary. He is so stubborn about meds and interventions in pregnancy.
But he knew all about Camden's surgery, and I came in with contractions when Camden got the diagnosis, and then he watched me not sleep and struggle right after Camden had surgery so honestly I think he just took major pity on me. He said he normally never offers but knew my pregnancy had been such a long road.
I was on the fence but ultimately decided I was ready to be a mom again. Ready to sleep again and ready to feel good again.

So December 22nd we were scheduled for 6am induction. The doctor hoped that if he broke my water it would be enough to kick me into labor and my body would just go.
When we arrived they were very very behind and we were told we would have to wait a couple hours. Waiting they had me on monitors and it was funny to see I was already contracting 2-3 minutes apart, as per usual.
 After a while I asked if we could eat and she said you will have to ask your doctor. My doctor arrived at 8 and said I'm here to break your water! Which meant no eating. And I was starving! But I was ready to be done being pregnant even more. So he broke my water which was actually quite weird. Camden my water was broken at 9cm and then I just pushed him out. I didn't really feel much. Breaking your water early is kind of gross. I didn't even consider how messy and inconvenient it would be to be periodically gushing water through my entire labor. I like to walk around and move so that was an unfortunate realization. But we managed!
I walked for two hours straight though I had asked for a birthing ball, my nurse never brought one back. You could tell she really didn't think I was going to go natural and didn't like the idea of having to let me. I imagine for inductions is so much easier to get an epidural in and get the pit turned way way up. Then the nurses really can just time it all however they want. But oh well. She was a little harsh at first. Garth ate food at this time much to my dismay but I knew if he didn't he would get sick.


At 10am she came in and asked if she could start the Pitocin. I said she had to check me first because I needed to mentally know where I was at and know that the pit was necessary. She acted like I was obviously not in enough pain to have increased at all but agreed. I had increased 1 cm but it wasn't enough contractions regularity wise so I agreed to let her do the pitocin. So 10am the smallest dose of the pitocin began. My contractions picked up then and I was a little nervous I wouldn't make it.
I was still strapped to monitors, I FINALLY got the birthing ball, but I could only move about a foot. So I bounced on the ball and stared at the monitors.

I felt like I was having a hard time finding confidence because I felt out of control. I didn't know if my contractions were just like the ones I had had for months and would do nothing, or if the pit was working and it would stay this way for a while, or if they would keep cranking up the pitocin and things would get really really hard. Mentally I was getting discouraged and bummed out, plus I was just really tired.

I stood leaning over the ball and then alarms started to sound that my oxygen was low and my hearing muffled like I might pass out. So Garth helped me sit back down on the ball and I felt like in that moment there's no way they would let me labor naturally if the pitocin was affecting me like that. But then things changed. I felt like my body finally caught up to what the pitocin was trying to make it do and I was able to get into a bit of a rhythm. Then they upped my pitocin a little.

They checked me again and I was a 6 at noon so I had increased two more centimeters!. They were finally allowing me to get into the wireless monitors and get into the tub. I knew I could do it at this point. My body had caught up, things felt normal I was progressing, and I was finally allowed to move around. I labored in the tub for a while and you could tell that the nurse finally had confidence in me. She kept telling me how awesome I was and anyone else who came into the room told me about how they were talking about me outside the room. Garth and I laughed about how she completely did a 180 attitude wise toward us.

This labor I really did the breathing and mental managing of pain all on my own. I just closed my eyes during each contraction and kind of did my own thing so it was a very quiet labor. A nurse came in and turned down my pitocin back to 1 because she said my contractions were 1-1.5 minutes apart and really strong and she didn't want to over do it for the baby. I was still really comfortable at this point though so I was fine with whatever.My contractions were really never more than 2 minutes apart the whole labor partly because of the pitocin, but Kyra never showed any signs of stress at all.

They checked me again at 2:30 and I was a 7.5 so then I knew I was in transition and I was pretty excited. They did warn me she was posterior so transition would take longer and the back labor would be harder. We got back to the tub which was great for a while until she got really really into my back. Once she was in my back I couldn't sit anymore so we got out of the tub and I got ready to lean on the ball over the bed. The nurses were trying all sorts of different things to help with the back labor but ultimately things were getting very very intense.

Then I told them I felt like I needed to push which shocked me that it came so fast.
They checked me and I was a 10 so the doctor was called and they told me to wait to push.
Waiting to push is the worst feeling in the world I think!
We let Anna know she needed to hurry if she was going to make it and everyone got prepped for the baby.

I had looked forward to pushing the entire time because with Camden pushing felt so good and relieving. There was minimal pain at first pushing him, of course when he crowned it did hurt. He took about 30 minutes to get out.
Well Kyra was nothing like Camden. She was still posterior and she KILLED. Pushing was extremely difficult and extremely painful. I was so confused and I was struggling to find a good rhythm and position. The doctor and nurses felt a little demanding to me instead of letting me labor down and figure things out they kept telling me how to do it and the ways they wanted it done were not comfortable at all. I found myself getting a LITTLE cranky at them lol. BUT it only took 10 minutes of indescribable pain and she was out at 3:47pm. She came out very very blue which I was then told is normal in Colorado. (Highest apgar score you can get here is a 9 because of it). Who knew.

What I experienced post birth I can only describe as like a mini roid rage lol. The pitocin wasn't turned off till I had her out and right after I had her I felt really sick and really cranky, and the only thing I can think that was really different with her birth vs Camden's was that I still had pitocin pulsing through my body. I was just really crabby, and probably kind of mean to the staff..

 The stitching actually hurt, the pushing on my uterus actually hurt, etc. None of that really bothered me after Camden but Kyra was SO much harder of a labor and much much harder to get out. She really hurt!!
But slowly I leveled off and felt more like myself and felt better about things. I got to hold her for almost an hour before they weighed her or anything. Anna missed the birth by about 5 seconds, but she got to see her brand new and hold her too!

Overall it was a beautiful, hard, tiring experience. I'm grateful it went the way it did and I'm so glad she's here. But laboring in the hospital staring at monitors and being strapped down for 4 hours to begin is really not the most ideal way to start labor. When you're induced things are a little different as far as what you're in control of. Kyra was very painful, but I went into it knowing she would be because she was painful to just carry inside me!!. Her labor and transition was easier than it was with Camden just simply because I knew what I was doing. This was the period I was very quiet and just in my element. However, pushing her out was much much harder. So it was a give and take [:

Garth was awesome. He drew on my back from 10am to the time I began pushing. He breathed through contractions with me and he was by my side every step of the way--as usual. I seriously am so so lucky to have that man. He was all in the entire labor, except for the portion where I made him eat his food in the corner! [;
 The nurse actually came in and teared up telling us watching us was awesome because we are such a great team and that Garth takes such good care of me she didn't have to worry about me at all. The other nurse was shocked that I am 24 because that's how old she is, her and my doctor told us that I look like a 20 year old and act like a 32 year old. So they were all very nice. Despite the fact I think I was mean to all of them after I had her! Only for a little bit though! Then I apologized [:

She is finally here and she is beautiful!

The end of pregnancy

I have once again found myself in that little pregnancy trap that comes with the end of each pregnancy:

I am torn between the feelings of gratitude I have toward my ability to carry a child, and the feeling that she better hurry up and get the heck out of me before I have a meltdown. Haha (; 

I am someone who does truly believe that in all walks of life and in every trial we need to find our foundation of gratitude to stand on. I believe that's not only how we are able to endure things, but how we were meant to endure them. So here is my disclaimer: 

When you see me walking/waddling/limping around these days and you see the fire in my eyes when you ask me how I'm doing, just know somewhere in there I am grateful!!

Physically I am feeling so very done. Contractions everyday for a month, a low low baby who never stops moving, and pelvic bones that gaped too quickly will do it to ya! Seriously if you ever hear all the popping noisies when I stand up or roll over, shed a little tear for my poor off kilter pelvic bones. 

My point being, I feel I've been failing in my effort to be truly grateful, starting to get impatient and angry in the physical trial I am experiencing, so I wanted to take time to reflect on my pregnancy. 

Trimester one: 

The beginning of my pregnancy brings back an image of laying on the floor watching the room spin while willing myself to not throw up. I spent much of this trimester trying to push through being sick without needing medicine to help me. 

In the morning Camden would wake, I would stand up and walk half way to his room, throw up, and then grab him and bring him to my bed. He would play while I threw up again and laid down for a bit longer.

I was successful in going on a lesser medicine than I was on with Camden. However, on it I still threw up 1-3 times every morning. But without it I threw up literally all day long non stop. 

This portion of my pregnancy was pre-diagnosis of Camden's chiari. I was just grateful for the days I had the ability to play with him. I'm also grateful for the timing. I couldn't have handled my sickness and Camden's sickness stacked like that. It was shortly after I got on medicine that he began to be very sick. The timing worked perfectly and reminds me of the trust I need to have in the timing of everything in our life. 

Trimester 2: 

This would be my roller coaster trimester I think. 

I was still sick every morning with medicine and bed ridden without. I tried many times to go off. 

This is also when we received Camden's diagnosis and the first time I had to go in for contractions. I had a brief period of time where I struggled to not feel bitterness about my pregnancy because it came at a time in my life when I felt Camden needed my all. Not my sick had to relax for the sake of the baby self, but his healthy could be up day and night with him normal mom. 

If I stayed up late or woke up in the middle of the night with Camden at this time, I would be sick and throwing up. And he was waking a lot in pain at this time. I'm grateful for Garth helping me where he could and for me mostly being able to endure the nights that Camden needed me without being too ill to help him. 

I'm grateful for her gender ultrasound. Watching her move and wiggle reminded me that there is good at work here. Things to look forward to. That each trial and this life are all but a moment and will end. That ultrasound reminded me of what true peace is. 

Third trimester: 

By some miracle I was able to go off my medicine the week before Camden's surgery. I was still throwing up every morning up until his surgery and then it stopped.  I had been so nervous to be up at night in the hospital throwing up but it went away for surgery and never came back. I was then given a little pregnancy honeymoon. 

I don't remember anything bad involving my pregnancy discomfort wise during the period of surgery and healing for Camden and for that I'm so grateful. I was always having contractions, but they weren't anything too alarming yet. 

33 weeks is when I went into pre-term labor (almost exactly a month post-op) and that's where I remember the discomfort beginning for me. I of course was nervous she would come too soon abs hated bed rest. The medicine they had me on made me super sick, but it was temporary. 

I'm grateful because here we are-- full term and ready to meet our baby girl. Medicine and bed rest free once again. 

I have been blessed this pregnancy, it seems mostly by timing. I've been Blessed to carry this little piece of hope inside of me through a dark time of my life. Blessed to watch miracles unfold around me as well as in my belly when it would've been really easy to feel nothing was going right. 

I am blessed to be trusted with another spirit, and I'm so grateful I get to give Camden a sibling. 

Grateful that surgery for endometriosis worked for me and I was able to get pregnant quickly after. Grateful I was so strongly directed and prompted about the timing of my pregnancy. 

At times it has been hard, but truthfully this pregnancy flew on by until I hit pre term labor. That slowed things way way down lol. 

My hope is that even though at this point it hurts to stand up off the couch and it's hard to put on my own shoes, I can remember to trust the timing. I want to remember all the things that have been done for me this pregnancy and all the lessons I've learned from this period of time I've had a daughter in my belly. 

What a journey it has been (: 

So here's to hoping it doesn't take too long to have her, but all the while knowing that no matter how long it takes she's going to come at the exact right moment for our little family. 

Someone Who Knows

When the picture I shared on facebook came up on my time hop today I was reminded of so many emotions I have felt on this journey of motherhood. Most importantly though it reminded me of the greatest lesson I have ever learned.

I remember this day like it was yesterday. A couple of weeks prior I had felt in my gut something was wrong with Camden. That something wasn't right about his movements. I took him to three doctors. I watched him lose consciousness in my arms and finally someone took us semi seriously. This lapse in consciousness would eventually get labeled as his "myoclonic episodes" by the time he was 8 months old. We weren't there yet.
The picture is of his EEG following up after having bloodwork and CT scans done.
I was told to bring Camden over tired and hungry. He cried on the way to the appointment because I had to keep waking him up in the car (30 minute drive) to ensure he would sleep during the appointment.

I share this, not because it was traumatic and we need to remind everyone, but because it stands out as a learning point for me as a mom. As I changed him in front of the two people who would be monitoring his EEG it was the first time I remember feeling really, really judged on my ability to be a mom to Camden. Camden was screaming--cold, tired, and hungry. They made comments about how he didn't even want his own mom touching him. They clearly weren't used to doing EEG's on someone so young, expecting my baby to lay there and smile while they drew on his head with a wax pencil. (Most pediatric offices use a marker btw--less painful and scary for a child because you don't have to push so hard).
This wasn't the last time I would be judged for things I felt about Camden.

When Camden went to children's after having back to back episodes so fast that his head was banging into things and his eyes were rolling, and he was completely unaware, I remember standing there holding my baby and the nurse asked me if I was old enough to be a mom. (She thought I was 18, but still).

I remember bringing him home from children's and watching his episodes and calling the doctor and crying to the receptionist to please find someone who would do an MRI. It was the last test they hadn't done.
I remember the doctor who called back acted like I was nuts and that there was just no need for an MRI.

I remember taking Camden in to be evaluated for his delay and being told I was crazy--that he was totally fine. Then he qualified as delayed and received therapy.

I remember the look the nurse gave me during Camden's swallow study when he was positive nothing would make Camden drink the barium and he wanted him to tube him and I said no. He told me Camden's own bottle wouldn't work. It did.

I remember telling Camden's GI that his myoclonus was back and he was complaining of head pain and her writing it off as if it just couldn't be related to his vomiting. I left that appointment knowing I wouldn't be going back, and in a few days we were in with a neurologist.

And I remember finally, finally, that neurologist did an MRI. And sure enough it finally answered every question I had been asking.

The funny thing is I don't feel bitter or angry about all the judgement and resistance I received. I also don't claim to have known all along that Camden would have a chiari or what would come from everything.
But at that EEG back in Idaho where I was treated like a young over stressed first-time-mom, I was being prepared to make the decisions I had to make regarding Camden's chiari.
It allowed me to be comfortable with a surgeon telling me there is no for sure course for this disease, and that I would have to decide how to manage it.
It allowed me to feel confident enough to push for things regardless of the look I received from the doctor or mom on the other end of the room.
It's allowed me to ignore all the looks the nurses give me as Camden screams before they even touch him--they don't know all he's been through and I would rather them judge me as the mom than him anyways. 

I know I am a young, and probably somewhat crazy, first time mom. The Doctors aren't wrong.

I still cry on nurses and doctors and get nervous about making decisions. When I went into pre-term labor and the contractions came back that night and the nurse couldn't get them to stop--I cried. I imagined this little nicu baby along with my traumatized toddler who wasn't even a month post-op who can't step foot in a doctors office or anything that looks remotely similar without a meltdown. I couldn't possibly be near them both and give my all to both. I told her she had to get the contractions to stop, that she had to get me home. She looked at me like she wanted to say, "your life sounds terrible" lol.

 Just this past week I found myself again home alone and left to make a call. Camden started screaming in the middle of falling asleep and I ran upstairs to find his incision swelling, a big no-no post op. I couldn't get ahold of anyone, so naturally I took a picture and sent it to my family asking them to confirm they too saw the swelling and I wasn't nuts. Ultimately, I had to make the call. Do I wait, do we go in now, do I call? I was frustrated to be in this position again. Ready to have a break from the dramatic scary life. So I cried for about 30 seconds and then I told myself to move on.
I called, luckily they had me email the picture to them. Based on Camden's behavior and images post-op they didn't feel it was a leak, though it was still a possibility. During the surgey some spinal fluid can spill over into the surgical site. Most bodies process it and reabsorb it but they said from time to time they see kids where it sits and then comes up to the surface and has to break apart in pieces over time. They warned me it would be painful for him beacause of the swelling in the incision, but that if it didn't continue to grow there was nothing to worrry about. So I spent the next few days up with a crying baby at night because he was in pain, and watching, begging the buldge to not grow. Luckily, as of yesterday it appears to be shrinking and he seems to not be as bothered by it. I was reminded by this situtation though that there will still be times where I have to buck up and make the call. To decide things without the ability to know.
Though I would like at least one solid month to go by where I don't have to wonder if my child is deathly ill. [:

There is one phrase that has carried me through Camden's whole life and has comforted me when I don't know what to do. I hear it in my head all the time. A single sentence that has come up in times of prayer, in times of emotion, and in times of desperation.

There is someone who knows.  

When I didn't know how to find answers for Camden, when I needed to make decisions for him that I couldn't base off any evidence because he couldn't talk, I've always known there IS someone who knows.
When I couldn't ask him what symptoms he was experiencing and a Doctor couldn't tell me what all would come of his diagnosis, there was always someone who knew. Someone who knew and could help me make the decisions.

 Every single time I have had a moment of panic where the tears come and I feel lost I hear those words.

I remember Garth and I talking and Garth had his moment of fear. (We've both had many).
He said he couldn't make a deicions because he didn't know what Camden was feeling, didn't know what would come if we didn't do surgery. That we couldn't know what surgery would cause, what complications Camden would experience. That there was no way of knowing anything.

I remember the words coming to my head almost like they were being yelled, "There is someone who knows all of that."

I STILL don't know, but he does.

Camden has grown from this totally helpless, dependent baby, to this awesome independent little boy. He has helped me go from a clueless terrified young mom to a more confident but still sometimes clueless slightly older mom [; .
I have taken care of him, and he has taken care of me. His smiles, his joy for life, and his love for me has carried me through it all. Just yesterday I was feeling especially tired and sore from all the contractions and I began to drift to sleep on the couch. My little two year old said "go night night!", grabbed his dusty crop hopper blanket, put it on me, and stood by me and drove his cars around the couch and occasionally across my baby bump. He gave me almost an hour nap! I love how someone so small can be what I need. Camden is definitely my hero in so many ways.
It's funny how little moments in life prepare us for the bigger trials. I'm grateful for the opportunity to reflect and to see how far we've come.
In my reflecting though I can't help but hope baby girl is a little less of a medical mystery to all of us [:

Mini Rollercoaster

Post-op has been good and it has been stressful over and over and over again.
We really hoped Camden wouldn't get sick and did all we could to prevent it but he got a cold last Tuesday.
Overall Camden has done well. Began acting like his normal self way faster than we assumed and just got right back to his crazy active little boy antics!

Friday we had his post op appointment where they just check his symptoms and incision. He had a bit of a cold but nothing else concerning so we were given the all clear. That night I got sick which I assumed would happen. It's one of those you run on adrenaline and stress for so long once you're told everything is fine your body just crashes. Camden had his first post-op outing-- Dinner with our family and my parents' halloween party.

The Halloween party was kind of hard on Camden, he was super scared. It made me sad to see him so scared, but he got through with the help of Paris. That night Camden ran toward me and I picked him up and realized he had thrown up all over himself. He was still happy and playing and I didn't really know what to think. Camden had vomited pre surgery due to his head pain and then once post op due to the surgery. But this far from surgery to randomly throw up worried me. Especially since just that morning we were told he is fine unless he begins throwing up and acts increasingly irritable.

Garth and I did our best to just act normal and wait it out to figure out what it was, but we knew that if he threw up again that night we would be in the ER.
I was so stressed. Wanting to know if he had a post-op infection, if surgery didn't work, etc etc. However, again he had a cold. So I tried to comfort myself by telling myself that it could be all his drainage.

Over the next few days Camden got cranky and irritable. He wasn't eating, and wasn't sleeping.  Still had his happy "normal camden" moments, but this kid has always been happy. Even when he had an ear infection he's totally normal and smiley just doesn't sleep well and throws tantrums easier than if not sick.
He woke up a couple times in the night saying "ow ow ow ow" but he's two and wouldn't  tell me what hurt.
We stayed home Sunday and he refused to nap. That evening he had a period of unexplained crying that we couldn't console. I couldn't figure out if something hurt, if he was just THAT over tired, if he had a sore throat like me, etc etc etc.

Needless to say I started to get a little worried but just didn't know what was what. Eventually it came down to the Neuro specifically told me to call if he threw up, was agitated or cranky, and/or complaining of head pain.
So I decided I would give him one more day Monday and try hard to get him really good sleeping see how he did.

Well Camden catnapped which is not like him so I knew I needed to just bite the bullet and take him in. I initially took him in to his primary care physician so I could rule out ear infection and strep before I called the surgeon.
I cried on the way to his appointment which is a little silly, but I just felt so exhausted by constantly having to question and navigate all of these different factors with Camden at all times. He never has just ONE thing going on and I was feeling a lot of pressure.

All his tests came back negative at the doc so I had to make the call to the NS. I explained that I just didn't know what to think and that his incision still looked great but he was just not sleeping and cranky and threw up on Friday.

I was a little shocked when they called and told me he would need an MRI the next day. The surgeon explained that they were worried about the possibility of a pool of fluid at the incision sight, hydrocephalus, and chemical meningitis. More crying from mom.
None of those things are things to mess with. Chemical meningitis would mean steroids and a possible hospital stay. Hydrocephalus or a collection of fluid would mean re-operating to fix a leak or add a shunt. All of these issues are things that can't be left and can cause major issues, so they wanted to see us ASAP.

Needless to say Monday night was not a fun night. Garth and I felt so, so overwhelmed. I told my mom I am just so tired. So tired for Camden. Done watching him go through all this stuff and just wishing I could help any of it.

We all went to bed early Monday night.
This morning I decided I was just going to enjoy this morning. I knew if Camden had hydrocephalus that we could very well be back in surgery by tonight so I told myself we would just have fun today. We played in the backyard in the leaves for a really long time. Every time I looked at Camden I felt like he has to be fine right? But we really had the same feeling going into Camden's first MRI and he definitely wasn't so it's hard to convince yourself after being used to bad news that you could even get good news.

Camden's MRI was this afternoon. It was the first time he would be awake during an MRI as this one was a rapid image looking at the fluid specifically. They wouldn't allow me to go back with him because I am pregnant, but Garth was able to meet us between classes to be there. Camden had to be strapped completely down and restrained during the MRI. Garth did not enjoy having to watch it but he did his best to comfort him during it.
I sat outside in the waiting area and I could hear him scream.
It was not fun.

We headed straight up to the clinic for the results. We kept talking about how surreal it was. That Camden seemed pretty okay but could literally be in surgery that night. And then we tried to not talk too much about how unfortunate and life changing a shunt would be.

FINALLY
The first time we have ever ever ever had good news from an MRI.
We were so so excited.
No leak, no hydrocephalus, no meningitis.
A healthy looking brain!
The even BETTER news was that we got to compare Camden's present day MRI to his old one. His chiari has moved up!! It shows improvement and over the next 6 weeks as the inflammation from surgery goes down it should keep getting even better. We weren't going to get to see Camden's chiari again unless he had issues in the future so the fact we got a little peek and that extra mile of peace of mind was amazing.
The NS explained that he looks great, is doing well, and just has a bad head cold most likely. She said she just believes you can't get too cocky with the brain, that hydrocephalus left untreated is just not worth the risk of waiting questionable symptoms out. She said if anything changes they will see him again but that at this point she thinks he is doing awesome, and has about 6 more weeks of healing to do.

I have never felt so so so excited and relieved. THE FIRST good MRI ever. Garth and I both now feel exhausted and agree this is the most relaxed we have felt since Camden got his diagnosis. We love it.
We are grateful.

It was obviously super scary waiting for the results, but maybe God just knew I wouldn't fully relax until he gave me some concrete proof that surgery helped my son. Who knows [;

The Hospital Stay

I wanted to give a quick summary of our hospital stay for my memory as well as for those who have asked questions!

Monday October 12th:
      The night before surgery Garth and I got very minimal sleep. Part of this was packing and repacking and making sure we were all ready by me while Garth tried to get ahead on homework, and the other part was just how do you sleep the night before things like this?
Garth and I woke at 4:30 and loaded everything up in the car. We woke Camden at about 5:15 and loaded him up. At first he tried to roll over and go back to sleep, but once in the car he was his normal happy self. He pointed out the moon and the stars and excitedly babbled the whole way to the hospital. This almost made the drive worse, like he had no idea what was coming and we felt guilty.  

We checked in at 6:30 and Camden watched the ball machine they have in the entrance of Children's while we waited for my parents. Once we got to the surgery waiting area my parents got to give Camden their love for about 5 minutes and we were called back.
Garth and I got Camden in his gown and then met with the anesthesiologist, then the surgeon, and then a nurse who gave Camden some medicine to relax him.
We were both able to scrub in and go back with Camden into the operating room and stay with him until he fell asleep. 

When we walked into the OR he waved to the Doctors and said hi and thank you. We set him on the table and he picked up the little donut pillow and stuck his face through the hole to be silly. It just about broke my heart.
Then we laid him down and he cried pretty good once the mask went on, and then we left our little boy. It was so hard. I made myself hold it together until we walked away (Garth and I agreed no showing fear in front of Camden). And then the 4 hour wait began.
Children's updated us every hour by phone. They called about an hour in and let us know the incision had been made and the operation was underway. Knowing they had officially cut my baby's head was really hard.
Having my parents in the waiting room helped us just talk and relax though.

Time passed and the surgeon finally came out and told us it went really smoothly and as planned. We were excited. He said "just expect him to be really pissed off now" and went about his day.

We headed up to the PICU waiting area and I found myself so excited yet so so nervous to see Camden. I knew what came next would be the hardest part.

Finally we were taken back into the PICU and as we rounded the corner to Camden's room I could hear his cries. Instinctively I picked up my pace and turned to his room to see him screaming and being pinned down by two nurses. It was so awful. I found myself angry they waited so long to get us that he woke up without us there, but I was later told the dose of morphine he had should've kept him asleep longer and he came out of it very very suddenly.

Garth and I rushed to his side and rubbed his face and told him we were here and it would all be okay. He stopped his screaming (this screaming was SO different than normal cries from Camden. It was a pain scream, and one I've never heard from him) and he calmed down but still had tears just flowing down his face. It was SO awful.
They gave him more morphine and he drifted into a bit of a raspy sleep. He was still on oxygen at this point as his breathing was still a little labored and he just looked so so pitiful. As time went on Camden would wake crying and in pain but unable to get a lot of help. Finally his first coherent request came and it was "Apple Juice". We gave him a juice box but he just ended up throwing it right back up. (It is very common that this type of surgery makes you very nauseated and we were told to expect a lot of vomit). Vomiting really hurt his head because of the natural way your head jerks when you throw up.
Basically they tried to get Camden to have wake periods and sleep periods via morphine. They couldn't keep him completely sedated as they needed to come in and check vitals and pupils every so often being that this was a neurological surgery. As time went on Camden got worse and worse. Less and less comfortable, begging to be "all done" and lots of crying. He wasn't really having successful sleep periods. The nurse told me she didn't understand why he was still even able to fight it after his three doses of morphine. We decided to switch him to oxy as soon as we could.
As soon as we got him onto Oxy he did a little  better coming in and out of sleep. The half dose of morphine hadn't been enough to touch his pain, but the higher dose made him loopy and frustrated, but never sleepy.

Monday was so so very hard. I can't even really put it into words. There wasn't much we could do for him. He couldn't move himself and he couldn't turn his head. He wouldn't eat, he just went back and forth from the bed to the rocking chair and we did our best to distract him with movies.

Our day nurse was great and understanding about how scared he was of her. Our night nurse was awful and very very rough with Camden. She marked the turn where Camden began refusing his meds so he would have to be pinned down and forced to take them.

Over all a very terrible day, but he got some good sleep and was able to sleep with Garth in the rocking chair.
One of the hardest parts of this day was that I couldn't rock Camden even when he begged for me. I tried, but my pregnant belly made it so his head sat kinked and it hurt him. There were two times I had to walk away from him so that he would settle for Garth and stop begging to be rocked by me and those are the two times I believe I cried the most at the hospital. I mostly held it together in front of Camden, but having to walk away from a baby who is crying for you is not an easy thing. My only comfort was that he wouldn't remember, I counted on the morphine for that lol.

For a long time now I have been given "rules" about my contractions pregnancy wise. I've been having contractions forever, off and on. I've only had to go in for them once, but I was given a new specific rule about how many I can have in an hour and for how long. I find myself having to sit more often than I would like in order to not go over my count. If i go over I'm supposed to call the hospital and follow pre-term labor instructions. Monday is the only day since being given the rule that I broke it. I intentionally told no one, but I tried my best to pay attention to if they were progressing or not. Eventually I had to sneak away while Camden napped and go drink and sit in the cafeteria with my mom to get them to stop, and by this point they were pretty painful. But they stopped! So yay for that.

Tuesday:
Tuesday morning was worlds different than Monday. Camden was still not quite Camden, but he was talking. He laid in bed and ate a muffin and drank some juice which made me so happy.

 He interacted a little that day, and slept as much as you can when in the PICU hooked up to SO many things and checked so often. He still did not try to move. We had him sit up for about 5 minutes to do a puzzle and to try to help him get using those muscles so they wouldn't stiffen too too much, but he couldn't manage it very long. Tuesday was full of ups and downs. Moments that were much like monday, and then moments where he was happy and joking with us. I really had to get on the nurses to make sure they got him his meds on time and often they were late. You could always tell when we were behind on the meds and then it took a while to get back on top of them. Turns out Oxy makes Camden itchy all over, so with each Oxy dose came benadryl and if they missed it or gave it too far apart he was miserable.

Thankfully we were transferred out of intensive care that afternoon and Camden was able to go from 4 needles and 4 wires to one wire and two needles left in.
Tuesday night Paris visited and so did my parents and Anna. Camden liked having Paris there and eventually found himself wanting to play. He was giggling at Grandpa throwing a ball against the ceiling, and He RANDOMLY hopped down to get off the bed it was so shocking. He was super unstable but he wanted to play. He began by rolling a car back and forth with my dad and I was so shocked. He then decided to stand up and throw the ball like Grandpa! And then he JUMPED in excitement. It was so crazy! He was running and jumping not very long after surgery! This activity lasted not long though and he quickly fell asleep. He slept really well this night and I got to sleep in the bed with him since he had less monitors so I actually got some sleep too!

Wednesday:
Wednesday Camden was on the move, but not very coordinated. He was tired of bed and tired of watching the only two movies the hospital had there for him. He wanted out and we were having a hard time trying to keep up with his wobbly self.
Watching Camden first walk that day honestly really scared me. His legs were falling out from under him, he couldn't get them to keep up, he looked terrible. It is scary when you know they've touched your baby's brain and hard to not worry about all the possible problems they could cause! But the surgery was right near his balance center, and it changes the amount of CSF that naturally flows through his brain so his equilibrium was reset and I was assured it was normal. He was still really stiff and nervous about moving his head, but he wanted to go see the ball machine. So we went to watch it in the wagon and we tried to let him switch sides so he had to turn his head different directions each time. I teared up a little watching him move around because he just didn't seem like my Camden. But I got him some ice cream and watching him pound it reminded me he will be okay. He was still really stubborn about eating but getting better. We transitioned him off of Oxy and his last IV med Wednesday, and we couldn't get him to poop so sadly Wednesday night we had to give him a suppository. After the suppository Camden was so much more comfortable and happy he ended up staying up till 2:30 am just babbling. We got no sleep Wednesday. The nurses woke him at 4:30 and then Garth and I were woken by several different teams of people at 5:30, 6:00, 6:30 and then up for the day at 7. We were very done with the hospital at this point!

Thursday:
Like I said we had no sleep, and because Camden was likely going home there were a lot of people needing to see him and talk to us. Camden's surgeon came and saw him everyday multiple times and checked his incision himself so we were really grateful for that. Camden was still wobbly and uncoordinated at this point but always getting better. We went to the playroom and played for a long time and by the time we got back we were being discharged. We were so happy to go home! Camden requested one more wagon ride (he really liked them) and then we headed out.

Being home has been great for Camden as far as the fact he is way more comfortable and gets much better sleep. However, in a lot of ways it is exhausting. Harder to contain him and make sure his crazy self doesn't fall or do something reckless. He has gotten pretty stubborn about his medicine so that requires a lot of creativity on our part.
I have had my moment of emotion since being home where it hit me that my baby's brain was touched. That we put him through something immense, and that I still wouldn't even know if it worked for a few months. I am terrified of having to do it again, but so so many people have repeat surgeries for Chiari -- for various reasons. I would love to walk away from this and be done, but remembering there's no cure makes me sad. I don't want to repeat Monday ever. And then I remember my daughter could have this too and the thought of doing it with her is also really hard.
So it has been a little up and down since being home, but we are doing our best to take it a day at a time and just be grateful for how well Camden is doing. He really is such a champion! It's just really hard to not worry so much about every little weird thing !
Post operative infection they say shows up around 7-10 days post op so we want to get through that window. Risk of infection is pretty high with this surgery. We need to wash and check his incision everyday and watch for any signs of a CSF leak. His incision is a little gnarly but overall looks pretty great. He is a little warrior! Doing so so well and doing his best to just be his normal self.
Right now one of his biggest nuisances is that he can't look up high enough to see planes fly over in the sky (still really stiff) he has to sit down to try to look up and see them, but we are getting there!

We are so grateful for all those who care about and love him. He's the greatest little thing!

Our Many Miracles

There are a few parts of this new Chiari journey, otherwise known as just our everyday life now, that I will simply never forget.
       
         I will never forget watching Camden be put under for the first time.

         I will never forget the neurologist showing us the imaging and him talking like it was completely routine and saying everything looks good and normal "but". I will never ever forget that "but". Or his hands pointing at the "malformation" within my son's brain that was up on his screen.
Instinctively I reached for Garth's hand, but I'll never ever forget the way that moment felt, not even if I tried.

        I will never forget his surgery days I'm positive--though those have not yet happened.

However, I've realized there are other things I simply don't WANT to forget. So I decided I want to write out our little miracles.


       First and foremost, somehow my one year old (at the time) learned how to tell me when something hurt. Not only could he express he was in pain but he could show me exactly where the pain was. I don't have any idea how my child who can't understand the urge to go to the potty can understand how to tell me mom it hurts. I literally cannot find any connection as to how he learned what "Pain" is, but to me it is a miracle. A miracle that he would come and just tell me simply "it hurts" and point to his neck. At first I thought not much of it, because he was one. But it just bugged me and he kept telling me, and now I am so grateful for this miracle.

    Second, our location. Most of you know when we moved to Colorado it was kind of a blind hopeful move. We had to move and be out of our student housing, but Garth didn't know what Grad schools he was accepted to yet. So we took a gamble and moved to the school we were hoping to be in. Garth decided to apply to the program here randomly one day early on in our marriage. I hadn't expected to ever come back. But there have been several experiences that have shown us we are meant to be here. One of which is the fact that we are equal distance from two really great children's hospitals. One of which has one of the best neurological departments in the U.S.
We have been able to meet with two pediatric neurosurgeons that both have immense experience with Chiari without having to go far at all. The fact we even have CHOICES of surgeons here is so unique.
I have met SO many who have to drive a couple hours, or even FLY to a whole other state for their opinions and surgeries. Having a specialist in chiari is so vital, and here we are sitting 30 minutes from two!

    They found Camden's chiari fast, and before he was even two year's old. I cannot tell you how many people I have met on this journey who it took 3-5 years to finally find their chiari. And even then the child is much older and much further progressed than Camden's issues are at that point. Most parents don't even know to start looking until their child is 5 years old and can better express their pain or challenges.
We have been so prompted and guided in which doctors and routes to take for Camden we found his actually really easily. Chiari's symptoms look like so many other things many people pursue the wrong routes for years. We found Camden's young, and the younger he gets help I KNOW the better off he will be. To me and my family this is a miracle. Camden was able to express just the right symptom for his age, and I already knew neurologists here I could take him to. It clicked into place almost too easily. Miracle.


      Miracle number 3 is my pregnancy. It has provided just the right amount of hope and positivity and things to look forward to, without taking me away from the things Camden needs me for. I know it's helped get me through this and remind me that this is just a moment. I also know if I hadn't gotten pregnant before this happened I would've been terrified to even try, and too stressed to add to our current situation: and I KNOW that a spirit was read to be here. So I'm grateful for the timing.


      Miracle number 4: Eternal life. I know that someday, no matter what happens within this life, Camden will be healed. I also know that he will always be mine, and a part of my family. This knowledge gets me through the hardest of days.

      There have been two other highly spiritual experiences and miracles, but they are too tender to share on a blog. So to end this post miracle number 5 is Camden. Somedays I feel like this whole ordeal knocks me off my feet over and over, like I have to reprocess every single day. But then I look at Camden. The one who is actually dealing with the chronic pain and he is SO happy. I've come to realize most children just look up at you when you walk in the room, if that. Most children are content just playing and going about their day. Camden, when someone enters the room looks up and beams. He begins to explain to you all that he is doing, while giggling and smiling. Across the dinner table he gives me random smiles throughout the whole meal. He wakes up each morning with a massive smile on his face. The kid is just giddy about life, and that is what picks me up on the days I feel like I get knocked down. I've learned my real-life hero is just over 2 feet tall, wears a diaper, and sleeps in a bed with guardrails. He keeps me going and reminds me to enjoy this journey, wherever it may lead us.

Chiari Update

SO much has happened, where to even begin?

After our last appointment with our first Neurosurgeon we were told that we would monitor Camden, keep track of his symptoms, and meet again in 3 months.
We were shooting for making it to the age of 3 years old before Camden would have his surgery.
Initially this felt like a good and reasonable plan.

As we began to keep track of symptoms I began to feel worse about the idea of waiting a year for surgery. After keeping track for a couple weeks we established that the longest Camden was going between days of bad symptoms was 3 days. We also began to see new symptoms popping up.

Chiari is a progressive problem, and there are a lot of things that it can cause that are permanent. Without getting into too many of the complicated details I will give two examples. The longer there is pressure on the tissue of the brain the more damage can occur. Brain damage is not reversible, once it's there--it's there. Surgery won't take it away. Some with chiaris see regression in developmental areas. Chiaris also block the flow of CSF and it can cause a syrinx or a cyst in the spine. Once you have a syrinx, you have a syrinx. Surgery does not guarantee it will go away, and a syrinx carries the risk of permanent spinal damage and paralyzation.

It's hard to navigate because brain surgery is brain surgery and carries significant risk. Not all people with a chiari malformation end up developing symptoms, and some never progress. So it is impossible to know what route Camden's would take. However, I began to feel like there was/is more occurring than Garth and I can see from our perspective. I feel that things are progressing for Camden, and that a year would just not be an appropriate waiting period for Camden's situation.

I began reaching out to those I know who have children with Chiaris and talking about ages of surgeries, recovery, etc. I started to feel in my mind like it was going to come for Camden probably in October.

So we met with our second option of a Neurosurgeon for the second opinion on Thursday. We hadn't really expected to like him, as we did really like our first surgeon. Both come highly recommended and both have performed surgery for chiari's hundreds of times. Both are also pediatric neurosurgeons, which is what we wanted.

We actually really, really liked him. We were warned that some feel he is a little blunt or even a little arrogant, but he just had a dry sense of humor that really reminded me of my dad lol.
He explained to us that the images of chiari's alone do not define the need for surgery or not.

Some people have TERRIBLE herniations and no symptoms, others have symptoms and mild herniations. Statistically speaking, usually those who have symptoms have a restricted or blocked flow of CSF which warrants a need for surgery.
He explained that it is all about the story you tell. So he asked Camden's story.

Camden's story and issues basically begin at three months of age and he listened and wrote down all we said. He agreed that surgery for Camden is reasonable and would likely help.
He did not feel that there was a need to wait until he's three.
When you are three the veins in your dura (brain sack) become more organized and it's easier to avoid a brain bleed when cutting the dura. However, if you do cut a vein it is fixable--simply becomes a longer surgery. So the surgeon explained its not a reason to put off relief for Camden, and it's also not a common thing to happen.

However, this surgeon would like to do a different surgery than the first. Though he's willing to do either one-- it is our choice.

The standard "full blown" surgery for chiari goes like this:

Removal of piece of skull.
removal of portion of spine.
cut into and opening of the dura
add a patch to the dura (usually a skin graft from tissue higher up on the skull)
and sometimes cauterizing or removing the tonsils of the brain.

This was the surgery the first surgeon recommended. It has the highest success rate for removing the symptoms and lowest risk of repeat surgery-- however, it has the highest risk and the highest rate of complications post-op.

The lesser surgery is the one the surgeon suggested he would prefer to do. He also clarified he will never cauterize or remove any part of the brain, which I really liked.

This "lesser" (if you can call brain surgery lesser) surgery involves:
removal of piece of skull
removal of a portion of the spine
and then instead of fully opening the dura he adds slits to the outer most layer of the dura so the dura itself can expand.

He has performed this surgery many times, and only once has he had a repeat surgery after, but for a different reason.
The issue is it is less "thorough" we may not see a full reduction of Camden's symptoms. However, usually the risk that comes with opening the dura is warranted when there is obvious neurological damage occurring. Camden doesn't show any developmental delays or issues with balance or anything like that so he feels he would do best with a minimal risk surgery to alleviate his debilitating pain.
The issue here is Camden is two, we are fully aware we cannot even know the full scope of his symptoms, because he lacks the ability to communicate all he is feeling.

However, one of the possible side effects of opening the dura is chronic head-aches and vomiting-- a symptom we are trying to take away.

So that gave us a lot to think about. The Dr. has agreed to do whatever surgery we feel most comfortable with. He assured us that he would not recommend the surgery if he didn't think it would help Camden because, again, it is a major major surgery.

Luckily for us our pediatrician is awesome. His son is a neurosurgeon in new york and works with a chiari specialist. He has offered to send all of the opinions and images to the specialist for us so he can help us decide which surgery he recommends for Camden personally, as well as from the perspective of someone who knows a lot about chiari.
We are so so grateful for that.


So as of now, surgery is on the books officially. October 12th is the date, just need to pick the type of surgery in the meantime.

We are terrified, and hopeful, and grateful all at the same time.
Right now life feels a little hectic and it seems to always feel wonderful and terrible all at once all the time. We hope we can continue to feel guided and comforted as we struggle to make the right choices for our little man, and we are grateful for all the support and prayers that have been going out to us and to him!!

To be real

I've decided to write more in-depth about the process our family has been going through lately. It's possibly because I'm just dying for someone to let me spill my guts to them, or possibly because I'm tired of people telling me that I'm strong, or possibly just to organize all my constant thoughts. Either way here goes:

     Camden was diagnosed with Chiari Malformation type 1 not too long ago. The first two weeks were spent just processing. Trying to figure out how I felt, what was going on, and trying to process all my emotions. There was a lot of crying and a lot of keeping to myself. Mostly I think there was just a lot of surprise. I hadn't been worried about Camden's MRI. Camden had so much going on the MRI was kind of a random test in the midst of several other random tests. When the doctor began to explain the abnormality within Camden's brain I was still shocked.

Anyways, I feel like for the most part I am past all the very surface level emotions now. I have been able to find my stable ground which includes the elements of gratitude needed to navigate everyday life. I've come to terms with the fact that there are much worse things happening to people everyday and I'm not being picked on. I have established that I will take this a day at a time and I will eventually be guided. I have accepted that there is a definite plan, and I'm working on being okay with the fact that I'm just not currently in the know for what that particular plan is.

My knowledge of Chiari has grown immensely since the last time I wrote. Once I processed and stored the emotions I could delve into the facts and figures. That part has been really hard and yet really good. Researching feels simultaneously like self torture as well as taking control again. I've been added to two Chiari groups on facebook, one specifically for pediatric chiari. Initially it completely depressed me to be added and begin reading people's stories. It hit me hard that this a very real issue, and very much a life-long thing. Even with surgery there are life-long repercussions, and monitoring. Without surgery there is possible life long issues and definite life long monitoring. It still isn't easy to read adults describe the symptoms and feelings my 1 year old can't yet put into words. I didn't expect to see that there are Chiari walks and races for awareness, chiari groups all over, chiari centers, etc etc. For about two days I struggled with the idea that this wasn't something I would be able to fix and walk away from. But then I began my research.

I have spent countless days reading medical journals, published research and studies, and different personal accounts and stories. I have read entire blogs and studied more medical statistics than is probably normal for a stay at home mom. I go out and I do normal things, but it is always there in my head--literally always. I know I'm a bit quieter, and truthfully I am not depressed-- I am quite hopeful, but I have so much to constantly think about it just never goes away.

Let me give you a slight sample of the medical rabbit hole I have ventured into:

I have learned that there is a huge division amongst neuro-surgeons on chiari and recommended treatment. A recent survey of 250 neuro surgeons found a huge division in their choices they would make for 3 different mock scenarios.
They disagree on what warrants the need for surgery.
More and more research points to the fact that the size of the herniation (how far the tonsils of the brain come down into the spinal cord) does NOT adequately determine the need for surgery. Symptoms must be taken into consideration. More studies have been done and cine MRI's have become a regular tool in Chiari patient's care. These are special MRI's that are a series of images meant to actually measure the flow of the CSF. (Cerebral spinal fluid). Most patients who have blocked or limited flow are symptomatic. Lack of flow is a serious issue with serious repercussions, many of them doing permanent damage. Camden is symptomatic. We do not yet know if his flow is ever blocked or restricted beyond the one image we have.

At Camden's age he has to be put under for every MRI he has. He is about to have his second one. Garth and I have been pushing for the NS to do both the spinal MRI and Cine MRI at the same time. She doesn't feel there's enough reason to do a cine MRI yet, but we don't want him to be put under for a third time when they could get all the info in one sweep.
Plus we have a second opinion scheduled and from what we've learned most NS want the cine mri with everything else to get the full picture. It is nice to be able to feel educated enough to be an advocate for my son, but frustrating to experience resistance and hard to know when to keep pushing.

Camden's spinal MRI will look for a tethered cord and/or a syrinx (a cyst in the spinal cord). Either one would likely mean surgery. The risks of a syrinx are high, the possibility of becoming paralyzed is just one of them. A syrinx can be developed at any time with out without symptoms in Chiari patients. It is the constant risk of not doing surgery. The longer there is pressure on cerebral tissue the more permanent damage can be done to it. The more permanent symptoms that are irreversible can pop up.

It is hard to not lean into surgery so badly because the fear of the unknown/uncontrolled.

Surgery is not without risk. There are SO many types of surgeries.
Removal of part of the skull and spine are the general standard procedure, opening the dura (sack around brain) is the tricky part.

Opening the dura involves the largest increased risk, however, it involves the highest rate of success and lowest rate or repeat surgery.

Removing the bone causes a ton of pain, a large incision, and the possibility of the brain slumping in the skull because too much was removed. Some doctors advocate only opening the dura and cauterizing the lower end of the tonsils. This sounds terrible, but has evidence to back it.
Chiari patients have abnormal tonsil tissue (again this is part of the brain) and they don't know if its abnormal due to having been damaged by the chiari or if it is abnormal because they are chiari. Some doctors argue the tonsils don't even function in chiari patients. (The actual purpose of the tonsils is still relatively unkown).

Duraplasty (The surgery where they open the brain sack) involves a patch being added to the dura. This has risk of a leak. Which is obviously a serious risk. Doctors disagree about the type of patch that should be used. Skin graft from patient, cadaver, cow heart (this is rare now) etc.
Anytime the dura is opened the system resets. Patients take a long time to recover, all senses are heightened, and exhaustion lasts for a long time post-op. It is a MAJOR surgery.


Surgery is terrifying and going to be immensely painful for Camden. I don't know how to choose that option.

The option of waiting is hard as well. Chronic pain for Camden's life, symptoms Camden can't even tell me he's experiencing--and may never know to tell me because he has had them since birth and knows no different. Vomiting due to head pain. Dizziness. Numbness. Possible neurological damage. Possible spinal damage. Of course it is also possible to have no progression and just minimal head aches forever. *this option is hard for me to believe being as Camden has been symptomatic his whole life. (swallowing issues, reflux, benign myoclonic movements, head pain, random vomiting, struggle eating solid foods initially, temporary developmental delay -- these are all things Camden has experienced that fall under the scope of Chiari symptoms).

Some doctors advocate surgery as a last resort. Others do not believe Chiari is a life-long disease. They believe it is simply an anatomical abnormality that can be corrected. I tend to agree that it makes logical sense that the sooner it is corrected the better off people may possibly be. The longer there is pressure left on the brain the more damage there is to the tissue. However, surgery is not a cure and has about an 80% success rate, which is a relative statistic because success means different things to different patients. 

I've come to realize I will have to make not only the choice about surgery, but also what kind of surgery, what doctor do I trust to perform it? Needless to say I feel so much pressure. To know things I simply cannot know. To understand things doctors themselves don't even yet understand.
Which should explain to all of you why I am so quiet all the time. So so so much thinking is going on in my brain right now.

I don't even know how to spill this to people and explain the feelings I am feeling all at once 24/7. I don't cry often anymore, because It just simply isn't productive.
I'm determined to be educated enough to feel confident when I feel guided.
I recently had a very special person look me in the eye and tell me she knew I would make the right decision, and that has meant the world to me. More tests and more time will hopefully select for us the seemingly most beneficial path, but I pray when the time comes I feel at least 90% positive of my choice.

Again, I KNOW there is a plan for Camden. There are just some plans I don't know how well I will be able to handle.
We shall see.


Hopefully this explains a little more of what's going on in our busy, hectic brains over here. Be patient with us!

 

Reminders of goodness

     Every night before I go to sleep I check on my little man. Some nights I'm so tired I check him, tuck him back in, and leave to bed. Other nights I stay a while. Sometimes I sit in the rocking chair in the room, sometimes I lay by him. 

Admittedly, lately, some nights I cry when I check him. Sometimes I'm overwhelmed by the desire to help him more than I can, to understand more than I do about everything that has been going on for him. 

Despite those emotions, every single night without fail I feel an overwhelming sense of gratitude as I watch him sleep. 

Camden's sweet little spirit will get to be a part of my life for eternity. He is the goofiest most inquisitive little boy, with a big big heart. He giggles at most everything and makes up new words everyday. He loves to be chased and loves to learn new things. He loves all things water, and loves the snow so much sometimes it's the first thing he asks for in the morning. 

I love the way he trusts me. The way that he relies on me and the ways he pushes me to be better every single day without even knowing it. Sometimes I'm not sure how I got so lucky to get to call him my son! 

He's definitely my little trooper. 

At this point Camden has days where he complains of head pain and he randomly throws up. I can't imagine the type of head ache you have to have to throw up multiple times, but he keeps chugging on like nothing is wrong. Occasionally he stops playing to come to me and tell me his head hurts and sits with me for about .5 seconds then runs off to continue whatever he was doing. 

The surgeon hasn't yet decided the plan for Camden, we need another MRI, this time of his full spine, and then hopefully decisions can be made. 

It is easy to feel a little angry for Camden's sake about all he has/is going through at such a young age, but I was recently reminded that there is always good occurring too. 

Tuesday we had our ultrasound and we were blessed with a very thorough tech. It was the longest ultrasound I've ever had. She didn't know our situation really, but I needed to be able to have that time of just watching our growing baby move around. I needed to be told she's healthy, and there's no sign of a chiari malformation at this point, but more than that I just needed to be able to see her and remember her. Life has been kind of crazy and focused on this one thing lately it was a moment to slow down and stop. It was one of the first times I have felt true peace lately and it served as a pleasant reminder that so much good continues to happen so long as you're willing to remember it during the bad times. 

Camden continues to smile, he continues to jump around and get into mischief, and he continues to jabber to my belly at random points in the day. 

I continue to tuck him in every night, be way too sentimental, and to always marvel at how adorable that kid is when he sleeps. (: 

We are blessed, and we are grateful. 

When you are too smart for your own head.

   

There are a few things I know for certain.

1. I am so blessed to be a mother and a wife.
2. Heavenly Father always has a plan for me, and for my family. Even if it's not my plan.
3. The love one has for their own child is near impossible to comprehend until felt yourself.
4. Enduring well is the greatest struggle of life.

That's about all I know for certain at this point..

    It has been another couple months of adventures in the Wright household. It started with the flu from Camden. He woke in the middle of the night throwing up, and continued to throw up every so often until morning. This was my first experience as mom with child who has the flu. Someday I think I'll appreciate when the child can actually aim and knows to try to get to the toilet. Making it into the bowl was a hard concept for Camden.

 Exactly a week later Camden woke up in the middle of the night and threw up just once. A couple of weeks later Camden woke up again and threw up ten times over the course of the night. This pattern continued so I called his pediatrician and they asked me to come in. We couldn't see Camden's regular doctor because he wasn't in. I explained that he was vomiting only at night and I couldn't find any food patterns or triggers between episodes of vomiting. The pediatricians that were at the office that day all met together to discuss what route we should take. They called his pediatric GI  and sent us to their office. The GI ordered several tests. Stool samples, blood work, allergy tests, ultrasound etc. Camden was negative for any allergies, negative for any bacterial infections, and showed no abnormalities anatomically speaking. Around this same time Camden was complaining about a particular location on his head hurting. Then one night he woke up in the middle of the night just screaming and completely inconsolable. I assumed he was having stomach pains, but nothing at all would calm him down. Which is highly unlike Camden. It took 4 hours and finally a long car ride to get him back to sleep. The next day he was happy as a clam, same as every other time he woke to throw up--always fine during the day.

So I called the on call doctor at his GI and explained that something had changed and he was in severe pain. They scheduled another appt and we discussed theories with the GI. Between that phone call and the appt Camden had a few of his myoclonic episodes, which we have not seen in a long long time. I attended the appt and I told her about the head pain and episodes and she didn't comment much on it. She told me that she thought he had had a bacterial infection that had either run it's course by the time we tested or not shed when I collected the samples. She ordered more samples and explained that many bacterial infections leave a temporary lactose intolerance so she put him on a dairy free diet.


I left less than satisfied and called his regular pediatrician. I explained the head pain and all the extra symptoms and he made an emergency appt for a pediatric neurologist. (So grateful for a doctor who is willing to call me personally, and then personally called the neurologist to tell him to squeeze me in within a week!).


We met Dr. Ross, the only neurologist I have ever semi liked. He flat disagreed with the GI. He said there was no way his vomiting was digestive as it ONLY occurs at night. He said that head pain and vomiting is a good sign of too much pressure on the brain. When you lay down pressure increases and can cause you to vomit. He explained he wanted to do a spinal tap and an MRI. I was not too keen on the idea of a spinal tap as Camden hadn't thrown up again in a while. he still was complaining about his head pain (he complains multiple times a day every day) so I was on board for an MRI.

The Doctor pushed because toddlers have to be put under to perform an MRI and put under for spinal taps. If we did them at the same time he wouldn't have to be put under twice, but again I couldn't justify a spinal tap for just convenience. He told me there was another lesser test we could do to check for pressure--an eye exam.

I agreed to have one the Monday before the MRI (this past monday) and if it showed pressure then we would do the spinal tap at the same time as the MRI.
I was really nervous for the MRI because I knew it would be hard to see Camden get put under, and really hard to walk away from him and not be there for the testing.

We did the eye exam and while it was basically torture for Camden (he's had a lot of that lately..) there was no sign of pressure. So I said no to the spinal tap and we went forward with the MRI.

Thursday morning we arrived at the hospital at 7:15am. Camden was in new pjs and lighting mcqueen slippers and ridiculously excited about having "ma-keen" on his feet.
He had to be fasting and woke early so he wasn't too happy about much else.
They checked us in and explained how it would work.
The MRI would take 2 hours and he would first be put under by gas, then an IV would be put in to keep him asleep.

I carried Camden in to the MRI room and I helped pin him down on the bed as he had the mask on. Camden hates doctors for one, and for two no toddler would just lay there with a mask on their face so he tried his best to fight it. I told him I loved him and I was sorry and his screams got more and more faint until he went limp. His breathing looked really weird and labored to me so I asked if he was breathing okay and they assured me it was normal and told me to kiss him and say goodbye.

I most definitely bawled. It was not a fun thing to watch, and I did not like leaving my baby with strangers. Not to mention I was terrified for the test results too. The nurse explained to us where the cafeteria was and different things but I didn't listen. I just asked how will you get ahold of me if you need me? So she gave me a pager like they do at restaurants when you're waiting to be seated.
I didn't allow that thing to go in any pockets or bags I carried it all day. And I bought Camden a tiger at the gift shop because I felt bad lol.

He took about 1.5 hours and then they told me he was in recovery and they would get me when he began to stir. It took about 30 minutes of torture and then I got to go see him. He had a really hard time coming out of the anesthesia and it was sad but funny at the same time. He sounded like a cow and could NOT get his eyes open.
His first clear request was for "cars". So after I rocked him for a while daddy took him and he ate crackers while watching the movie Cars. We were then discharged and ready to go.

We walked across the street to the neurologist for our immediate results. He saw us right away and pulled up Camden's imaging.
He explained all that was normal then began to point what was not and my heart literally sunk lower than I have ever felt it. I hadn't really fully expected for there to be an abnormality.

Long story short, Camden has a chiari malformation. It's a malfromation of the cerebellum and means that his lower brain basically extends too far down into his neck. It puts pressure on the spinal cord and can cause chronic pain and head aches. It also blocks the proper flow of cerebral spinal fluid as everything is too cramped down there. The doctor showed us where we should see a thick line of fluid and showed us how Camden had a really really thin line meaning the fluid was having a hard time getting through. The pressure causes vomiting and is worse when laying down. The place where it is malformed is the exact point Camden tells me hurts everyday. It is also the exact same point where he loses control during an episode, and the neurologist told me it is definitely possible it is all related.
It requires surgery to fix, which even as I type just makes me cry. Camden's is not considered severe and it is not an emergency must be done right away type of surgery. We have time to consider our options.

This is a very over simplified representation, but simple for you. 

It is hard because with a toddler it is impossible to know the extent of their symptoms. This malformation can cause numbness, weakness of muscles, vision problems, etc etc. We do know he has daily pain, as he constantly tells me it hurts and points to the spot on his neck/head.
If left there are risks as well.
If the flow of CBS is blocked proper signaling cannot occur within the brain. The CBS could find another path (the path of least resistance if you will) and he can acquire cysts along his spine that are basically sacks of the fluid but they can damage his spine.
He is also currently high risk for serious head and spine injury if he falls the wrong way.

We still don't yet know if his malformation along with his symptoms are enough to warrant the need for surgery right away. We meet with the surgeon Friday and will be able to ask all of our questions and make more educated decisions.

All we know for certain at the moment is that we don't like the idea of Camden being in chronic pain, and we are scared of the risks of leaving it.
However, we also know some details of the surgery and it is a big big deal. Patients who have the surgery are usually in the ICU for 1-3 days post surgery and then in recovery at the hospital for 3-5 days after that. We know that it is considered a very painful surgery and I don't like the idea of my son's head being opened at all.
We hope that the surgeon will help us make a concrete decision we feel best about.

At the moment we are still kind of just coming off the initial shock wave. Definitely not something I saw anywhere in my future, nor in Camden's. Camden continues to be his goofy, unique self. His stranger danger continues to get worse the more testing he has, but he likely has a lot more imaging coming up after we meet with the surgeon. I also really cannot blame him. The kid is nearly two and he's had way more exams than I have ever hard.

However he is still a really happy boy and that helps a lot. He now knows how to say "BIG BRAIN!" and it makes me smile. We joke that he's just too smart for his own good so his brain doesn't fit in his little skull. He still carries around his tiger that I've taught him to call Chiari. I assume she will be there with us for all upcoming tests and procedures.
We know we will be able to come to a decision we feel at peace with, and we know Camden will be okay, it's just the getting there that will be hard.

The MRI was hard enough for me, surgery on my not-even-two-year-old's brain? I told Garth if I don't go into preterm labor it will only be by some miracle. 

Camden after his MRI. He would dance to the piano, and then rest for a bit. 

I think we are still at a very sensitive point. I don't like answering a lot of questions, and I really don't like people telling me all the bright sides I should see. Obviously there is a lot I'm grateful for, but there is also a lot it will take time to find any amount of gratitude for. I also feel that it is okay for me to be stressed, it's okay for me to be sad, and it's okay for me to be worried. It's my son, and it's only been two days.
So mostly I write this post not because I want to go on to talk about it with the world daily, not because I want attention, but because the more good vibes and prayers that are sent my son's way the better I feel about us going forward. So I figured getting it out there would be a good way for me to move forward and find my peace for now as well as acquire as much help for Camden as possible.

If you made it this far in reading... good job I'm impressed [: