Happy Endings and Battle Wounds

When I think about the past year, sometimes I feel a sting. Like I shouldn’t still be thinking about the past year. I have this idea in my head that I should have moved on by now. That people don’t want to hear me talk about it anymore, and like it is now “old news”. I feel a guilt associated with my bad days, as if having bad days means I’m ungrateful and weak. I feel like the fact I have continued to have some bad days means all the strength I felt I had before wasn’t real. I remind myself that things are much worse for so many people, and that things aren’t that bad for me. 

This cycle of pushing myself to find strength and beating myself up for losing it has continued for some time now. This week I decided I needed to either go back and better deal with the situation, or I needed to find a way to reprocess my current state of being. The more thought I have put into it the more I realized that it’s entirely possible that there is a distinct lack of talk about “life after the storm” as a society.

I’ve noticed that when someone is struggling people tend to instinctively tell them it will be okay. We point out how strong they are, we admire their ability to navigate their storm, and we praise their faith. We do not admire the aftermath, I’m not sure we even like to think about it. We want to hear that they triumphed. We want the happy ending tied up with a bow, and if the one suffering doesn’t see their happy ending we feel the need to point out how happy things are for them, or even how much less happy someone else’s situation is. There is no appreciation for the process.

I feel like I have had the concept of “everything will be okay” beaten into me. Everywhere I turned for relief I received the reminder that I just needed to remember things will be okay.

And things are okay, but things are also absolutely not okay. It wasn’t until this time last year that I realized these two states of being could coexist.  

The truth is I am different. My family as a unit is different. Life is different. That concept has proven almost as hard to accept as the chiari itself. I wanted to deny the ability for anything to cause permanent damage. I feel angry and impatient with myself. I tell myself it’s just dramatic and annoying I feel this way at this point.

It is as if I wanted to rely on The Savior hard enough that I would walk out of it all only better.

I am slowly learning that the battle wounds go hand in hand with the testimony gained. I had to fall down for the strength I felt to come, but that strength does not change the fact that I fell. Sometimes for scraped knees to heal a scar has to form.

When Camden points to his stuffed animal’s head and tells me it hurts it seems to shatter my world all over again. The fact that he remembers it is enough of a blow by itself, but the fear that he is using this to express his own pain is worse.

The first time Camden pointed to his head and said it hurt post op I felt it all come washing over me again. The fear, the sorrow, the anger, the questions. It comes back so fast it’s easy to forget how far we’ve come.

The recent drive we had to the ER for Camden’s possible seizures reminded me I don’t get to just turn away and decide I’m done. Life keeps going, and my life frequently leads to Children’s Hospital.  

Camden woke recently at night in what seemed like major pain and my mind can’t not go down the chiari road. We are so used to it being his pain and defining most of what he did. As much as I wish I could I will never separate the chiari from Camden. It will always be a factor, and always a fear.

When the neurologist explained the paperwork that would need to be submitted to any schools Camden attends it broke my heart a little.  

When I signed Camden up for preschool I got a distinct lump in my throat as I stared at the line I was supposed to write any medical diagnoses or chronic illnesses on.

Sometimes I cry that I still have not felt rest. That I am still so tired. So drained from all the guesswork, all the pain and tests I’ve watched Camden endure. I am ready for rest.

Some days as I watch him run around and play seeing his scar physically hurts me. It’s not just the reminder or the fact that he’s different from those he plays with, there’s just something about seeing your perfect little child’s body damaged that hurts a mom’s heart.

So here’s to being real about life after a storm:

 It’s true what they say, things are okay. I really have grown. I have felt fear and I have felt strength, I have felt bitterness and I have felt gratitude, I have been carried and I have crumbled—and I have the scars to prove it all.

Kyra's Birth as told by Garth

Once in awhile Amy asks me to write down my perspective of a certain event that has happened in our lives. Although this is something that I should definitely do for myself anyways, it has become a bit more frequent over the last two years. And so here we are again; another milestone, another experience, and not unusual a medical one at that.

            We were sitting in the sacrament service of our church meeting early in November when Amy told me she was having regular contractions. This was not unusual for this pregnancy and normally due to some form of over-activity and the cure was normally to sit down and relax for an hour and they would subside. The problem here was, in sacrament meeting we had been doing nothing but sitting. I remember Camden needing a diaper change, and so suggested maybe walking around would help the baby move positions and ease the contractions when she got back.  Well that was a stupid idea! A little over an hour later, with contractions still 2 minutes apart and 10 minutes into my Sunday school class we were out the door, dropping Camden off at Grandma and Grandpa’s house, and en route to Rose Medical Center in Denver.

            At this point a few things were going through my mind:

1)   She is 33 weeks pregnant. Is this real?

2)   This is real. Is this why we came to Rose because they have such a good NICU?

3)   If she is in labor, I didn’t eat breakfast. This can’t be good. Don’t like your knees when we get there.

Well we arrived, and it being Sunday had to check in through the ER. She was 2 cm dilated, 70% effaced. Long story short, they gave her steroid shots to help the baby’s development should she come early, which she tested positive for (although the positive predictive value isn’t very strong ß biostatistics!). We were kept 2 days. The food at Rose was delicious. We were very bored. They stopped her contractions with blood pressure medication (the common practice performed and little to no risk to baby).

We came home with a prescription, modified bed-rest directions, and anxious/nervous minds about what would happen.  We cleaned the whole house just in case.

Contractions happened again that night, took the medicine, nothing happened.

Over the course of the next few weeks Amy would have contractions 2 minutes apart for hours on end, sometimes up to 13 hours straight.

Black Friday early morning (sometime prior to 4am) Amy tells me she’s contracting, so she’s going to get ready. I pack the bags again. We clean the house. Somewhere close to 6am we decide to sit down and watch a tv show and see if they continue (Thank you Suits). Contractions subside. Nothing happens again. Whew.

We ended up reporting to the hospital a few more times for contractions, or fluid leaks, all ended up being false alarms. But boy did I get good at speed cleaning, packing bags, and loading everything up in record time.

By week 38 we stumbled upon the Prodromal labor term. This fit what was happening exactly. Maybe baby just wasn’t positioned right? Who knows. 38 week appointment Amy was checked: still 2 cm, still 70% effaced.  Our doctor, whom was chosen because he does not offer inductions, is very pro-natural birth, offers an induction before Christmas. What in the world? Lets review the pregnancy: Camden is diagnosed with Chiari at 17 weeks = Amy contracts heavily for hours -> we go to the hospital. Camden has surgery = Amy contracts heavily for hours -> doesn’t tell anyone so we don’t go anywhere (So Stubborn!). 33 weeks very moving Sunday hymns influence baby girl to want to join in the signing = preterm labor -> hospital visit. 33 weeks to 39 weeks Prodromal labor, hours on end every night, no progress. Yes, 7 weeks of labor. Yikes. After A LOT of thought and consideration we accept the offer to be induced, but in the order of operations we still want to do things as naturally as possible. Dr. says he is confident once he breaks her water she could very well just go into labor and everything will be gravy (not literally). Walk Flat Irons mall twice over the weekend prior to induction to try and put Amy into labor, walking at least 3 miles each visit (too cold outside to walk with Camden). Lots of contractions, but they stop after a few hours this time, not to mention we are not going back to the hospital again unless her water breaks, or the contractions are extremely painful and different than before. Nothing happens.  Whew?

Tuesday morning of December 22: induction day. We are instructed to arrive at 6am. We arrive at 5:30am to check in. Another couple arrives before us.  They get checked in first. Pretty sure they got a bigger delivery room. We get the shaft again. From 6am to 8am we sit in the closet room (very small, not much pacing room, and come to find out neither our Dr. or nurse both of 20+ years at Rose have ever delivered in this room before. Ultimate shaft!). After two hours of doing nothing, Dr. finally comes and checks her. 2cm. 70% effaced.  All of those weeks of contracting did nothing.  Awesome. Were they real contractions? Absolutely. Everything showed on the contraction monitor each and every time. Perfect.

8:05am Dr. breaks her water. Here we go. Contractions are more intense. She contracts for two hours, with more intense contractions. 10am the nurse checks her. A little over 2 cm. 70% effaced, -2 delivery position.  No progress? Awesome. Shaft again. 7 weeks of labor and water breaking = no progress for baby girl. Lowest dose of Pitocin is started. We request an exercise ball for Amy. Nurse: “Let me see if I can find one”.  Mind you we have been to this hospital many times and I know for a fact there are multiple exercise balls in the closets of every other room we have checked into prior to induction. Shaft again.  Contractions are obviously more intense now. 30 minutes passes, where is the exercise ball? Nurse: “Let me see if I can round one up”. 15 more minutes passes. Nurse: “I haven’t even had a chance to look for a ball yet”. For the love why can’t we just get an exercise ball and we will leave you alone! (The exercise ball really helped Amy in transition of Camden’s labor, we also couldn’t get into the tub yet because Amy was still hooked up to all the monitors due to Pitocin being used.) Finally after an hour from initial request we get the flipping exercise ball. Then we leave the nurses alone for over an hour. Magic! 12pm we request a mobile monitoring system (which are wireless and waterproof) so Amy can get into the tub. Nurse checks her: 6 cm, 80% effaced. Things are working. Nurse: “Let me see if I can find the mobile monitors”. Here we go again. I should note, in each of our previous visits the nurses immediately offered mobile monitors. We know the hospital is busy on this day, 12 women in labor at exactly the same time as us. BUT as far as we know we are the only ones without an epidural, rendering mobile monitors available. 12:15pm Where are the mobile monitors? Nurse: I haven’t even looked yet. Shaft. 12:25pm Where are the mobile monitors? We really need to get into the tub to help with these contractions. Nurse: Let me see if I can find some. 12:30pm Another nurse from one of our previous visits passes by, immediately gets the mobile monitors. We get in the tub until 2:30pm and leave the nurses alone for two hours. MAGIC! Now suddenly our nurse, as well as two others are constantly waiting on us, after seemingly being annoyed by our requests earlier in the day.  Our conclusion: they thought Amy saying she would do it natural was a joke, and thought our requests were annoying if we were just going to get an epidural.  (I’m in no way saying that getting an epidural is bad, everyone’s labor is different. I AM however saying Amy is a FREAKING ROCK STAR). 2:30pm nurse checks Amy:  7.5 cm. 90% effaced 0 delivery position. 2:50pm Back to the tub. Intense back labor. Baby is posterior. Could make labor long and delivery very painful.  3:15pm back out of the tub. Nurse checks Amy: 8.5-9cm. +1 delivery position. Lean over the exercise ball on the bed. 3:20pm Nurse checks Amy: 10cm. Here we go. They call the doctor. He is there by 3:30pm. Amy is doing amazing. Breathing through every contraction like a champ. Amy says she needs to start pushing. Dr. says to give him 3 minutes to get everything ready. My thoughts: “3 minutes? You better do your best 30 second drill buddy she’s ready to push! This is your job!” 3:37pm Amy starts pushing. Baby flips to be anterior while this happenening, extremely painful. For the first time Amy says she is in intense pain and doesn’t know is she can do it. 3:47pm Kyra Gwenn Wright is born, and looking very blue. Blue? Is everything okay? Dr. “We are a mile high, all babies are born blue here”. Whew! Look at all that hair! 7 lb 4 0z, 20 inches, 8-9 APGAR. For the first time, we didn’t get the shaft!

The rest of our hospital stay was very nice. It’s amazing how annoyed the nurses seemed by us up until they realized we were serious about our birth plan. Then once they saw Amy doing what she did, utter amazement, full support, didn’t leave the room, gave her whatever she wanted. Dr. “Amy your control during that delivery was incredible. I wish all my patients were half as good as you”. That’s my girl! I know I couldn’t do it, but she can! Absolutely incredible.

Dr. Levy was incredible (although some of his comments were ill-timed for Amy’s liking haha). He did a wonderful job. Our nurses turned out to be great in the end. Although they are perfectly terrible at putting in IV’s (to this day Amy’s entire hand is still bruised from burst veins). As usual, the food was great, and I gained 4.5 pounds in our 1.5 day stay in the hospital. Perfect! We were home by the afternoon of the 23^rd. Kyra is beautiful. Amy is beautiful. Camden is…still unsure about who Kyra is. But we are officially a family of four! And that, is definitely not the shaft.

-Garth

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!