To My Kyra Girl

Kyra,

Oh Kyra. Where to begin?
I feel horrible that I haven't blogged in so long. I so carefully documented Camden's life through this blog, and somehow this year I have completely failed you. There are so many things I want you to know about your first year and about your entrance into our family.

You came at the perfect time for me. I myself would not have designed the timing in the way it happened, but that's because I have a limited perspective. Thankfully your Heavenly Father knows us best.

Getting pregnant with you required surgery and the confirmation of endometriosis. The moment I knew I was pregnant I checked your due date, and then I laughed and said "whoops". You were due Christmas day. I was so happy to be pregnant, but also so scared of the sickness. I was definitely sick again, sometimes throwing up 15+ times a day. But you gave me random days off, which Camden did not.

From an outside perspective, you entered our family equation during such a whirlwind. I had to be checked for pre-term labor symptoms before I even knew your gender. They told me at that appointment that I could lose you and that they couldn't stop it because it was too early. But we fought on. I couldn't slow down much due to all the appointments and late nights of pain with Camden, but you kept growing and doing well at every appointment. I was able to keep everything with pregnancy at bay until shortly after brain surgery when the constant labor and constant trips to the hospital to keep you in longer started. I remember crying in the hospital when they wouldn't let me leave because they couldn't stop my labor. I was 32 weeks and they told me it could be likely you would arrive soon. I cried because I felt like I couldn't catch a break and I was so tired of hospital stays. Looking back now I can see that you WERE my break. The constant labor, the reminder to slow down for you-- those were my needed breaks. Even being in the hospital laying in a bed, ordering whatever I wanted to eat, that was a break. They were my opportunities to focus on something other than chiari, my opportunities to be selfish and sit down and rest in the name of a healthy growing baby. Counting and timing contractions all day long gave me something to focus on that I could measure, quantify, control. You gave me something else to focus on, something else to be determined for, and something to look forward to. It took me a while to realize how much I needed those "breaks" but I did, and I am so grateful to have had them.

 Your labor was challenging to say the least, you were facing the wrong way the whole time but to everyone's surprise (and my pain) you cork screwed on the last push -- and you have not stopped surprising me since. I can't describe your entrance into this family in any other way than you are the spark off the bench that we needed at this point in the game. I wish I realized then how much I needed your spunk. You are such a funny, loud, assertive, dominant, adorable, little girl. So dainty and skinny, but SO feisty! Seriously, so much personality in such a little body!! You added the extra oomph we needed to push through 2015 and kick-start 2016.

Watching you grow and seeing more of your personality develop has softened my heart, lightened my load, and made me laugh time and time again. You have consistently been a complete Momma's girl. You laugh deep and in your belly. You smile in a way that takes up your whole face. You growl at people and push away their hands when you've had enough of their affection. You push daddy away when he kisses me and I'm holding you. You lean in when you want me to kiss your cheek. You randomly grab my nose and squeal with the most giddy loud laughter you can muster. You snore a dainty adorable snore. You reach for me and squeal anytime I enter a room. You crawl around this house like you own it-- and you kind of do. You terrorize Camden. You crawl so much with your hands full of cars that you look like you have a limp. You babble and laugh at your own noises. Your cry is the most painful horrid cry I have ever heard, and you seem to plan to keep it that way.
You fit perfectly into our crazy messy life, and you have carried me more than I feel I have carried you in this last year.
I'm so grateful to call you my daughter, and I can't wait to see who you become.

Love,
Mom.

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