Tuesday, July 28, 2015

The Details

Last Monday we took Jack in for a routine check-up with a new orthopedic surgeon. We had been in the process of consolidating all of Jack's medical care to one city so we could cut down on travel time and to make life a little easier on us. I'm sure I've complained before, but traveling across the state of Montana, in different directions to different doctors, is tiresome. We'd heard good things about this doctor and Jack's muscles have been in need of some Botox for awhile, so we made the appointment with that in mind.

What happened next has so totally and completely unnerved us -- Jack's left hip is dislocated. Not 25% or even 75% subluxed, but 100% dislocated. His hip was fine on his last x-ray. We knew, in passing, that hips are a concern for kids with cerebral palsy, but on the list of things that we worry about, or that can go awry with Jack and his complicated medical make-up, his hip has always been pretty far down on the list for us. Just a total curveball.

The doctor placed the x-ray up in the room and said "I'm so sorry, but it's completely out." It was one of those moments where the wind was completely knocked out of me and I had to do everything to just focus on what he was saying. Tears came. Just sadness at everything Jack has had to go through in his life and now this, a "beast" of a surgery with a hefty recovery time. Of course there is no other option because without surgery, Jack would eventually lose his ability to walk.

The details:

Where? Missoula.

When? November 16th. We picked November for a number of reasons. First, our doctor recommended waiting for cold weather because it will be more comfortable for the body cast. Second, November is the only time that works for us as a family this fall. The timing couldn't be more tricky. My very important PhD exams are already scheduled for the beginning and end of October (two, day-long, written exams) and my oral exam will be early December. Waiting till mid-November is a decent window for Jon's work, too, and for Jack's school schedule, with Thanksgiving and Christmas time off. The hard part about having the surgery in November is the wait. Waiting is so hard.

The surgery? An open reduction with femoral acetabular osteotomy. This is in the family of the Pemberton technique, which I'm sure is named after a fancy surgeon of the name Pemberton. In the process of researching Jack's exact surgery, we found that there are many types of hip osteotomies. Many times, an orthopedic surgeon won't know the exact surgery until he gets in there on surgery day. Surgery will last all day, so we are hoping to get a morning time-slot. We will plan to be in the hospital at least two days post surgery, maybe three.

The recovery? Well, this is where we are most worried. First, let me tell you about the cast. It's a body cast that will go from Jack's ribs to his toes on the left side and to mid-thigh on the right. He will also have a bar connected between his legs to add additional stabilization. It's super important to keep the hip in the exact right position as it heals. The cast is semi-waterproof, but Jack won't be going near water. There will be an opening for his g-tube and for toileting (totally freaked about this toileting/diaper part). The time in the cast is probably why the doctor called this a "beast of a surgery." Jack will be completely casted for at least six weeks and then will have months of rehabilitation afterward.

All this has been hard to swallow. Yes, in the scheme of Jack's life, it is not one of those life and death things, but it's a hard thing and something that will be very difficult for Jack to go through.

The day after the news, I was sitting around a small table with some close friends. One said "Jessi, what do you need for us to do to support you through this? How can we be helpful? We love you." And that conversation is really indicative of how our family and friends have reacted. The offers of help and the many texts and emails we have received have been incredibly encouraging. Each time we go through these bumps in the road, I remember just how good we have been treated and I hope to pass that support to others facing the hard stuff.

This is just part of Jack's story and as always, life goes on. Jack has kindergarten to get ready for. I have studying to do. Jon has important work things. We will try to live our life and not fixate too much on November 16th. This preemie life is no joke and yeah, it can sneak up on you when you least expect it. We had a beautiful few years of being surgery-free and like they say, you have no idea how good you have it without those valleys.
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Tuesday, July 7, 2015

Preemie Outcomes

Jack and I hanging out by the Boulder River. Something I never could have imagined during the NICU.

There are no absolutes on this preemie road except that each preemie is unique. That has been my go-to response as of late when I'm asked questions or for advice, but it took me a long time to get here. It's not that I didn't understand the complexities of preemie development or that I hadn't heard of preemie struggles, it's just that I only wanted to convey rose-colored outcomes. Why? Because I so desperately wanted them for Jack. I did not want to be one of "those" preemie families.

Something changed around the time I wasn't afraid of the D-word (disability) anymore. In accepting our preemie outcome and most importantly, Jack, for who he is, I decided that our story is still pretty spectacular. And this little slice of the internet was going to get real. You may have noticed that the tone of what I say about prematurity has changed since I first started telling our story. This is just a reflection of the growth and healing that happens after six years post-NICU. Yes, Jack is our complete and total miracle, he's still our MJ, but right alongside that story is the reality that he has very difficult medical issues, ones that won't resolve or go away. Simply, he will not grow out the issues that started because of prematurity.

I won't deny that it used to be hard seeing other preemies doing better than him, especially when they were celebrated for doing so well (as if they had any control over their own outcome). The struggle that I notice in preemie circles is that we desperately crave and promote those miracle stories, the "perfect" outcomes so to speak, often to the detriment of a large portion of the preemie population. And I get this. Completely, I do. Of course my desire, still to this very day, is to flee from the pain, not lean into it. But the flip side is that as soon as I learned to lean into the reality of our situation, I was no longer uncomfortable with the D-word or any other word, for that matter. I want more families to experience that freedom sooner than we did.

Not fleeing from reality taught me the most important lesson - that of innate worth. Not what society thinks, not what the preemie community thinks, but the truth that worth is not based on ability or outcome. Worth is worth. These lessons didn't come because I suddenly had a revelation, but because slowly but surely, I could see what was right in front of me.

Preemie parents spend a lot of time in denial (speaking from experience here). We run the opposite direction of a lot of things because we can't imagine one more thing being placed in our lap. But the more I get to know you wise folk out there in Preemieland, the more I realize I spent way too much time being afraid, because our life, disability and all, is really good. I don't care as much about the developmental boogeyman or the dreaded phrases anymore. They are what they are. Just like Jack is who he is.

The most important thing I've realized is that hope isn't relayed through a perfect story or preemie outcome, but in accepting the situation we find ourselves in. There's a whole lot of strength, purpose, and joy in that. Let's share more of those kind of stories.
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Thursday, June 25, 2015

The Cabin

Around this time last summer, we went on our first family vacation to a cabin on Flathead Lake. To our great surprise, Jack actually enjoyed being in a new space for the entire week. He was in heaven, really. For a kid who loves his routine, we didn't know what to expect, but he did great and especially loved being by the water.
That's why we were thrilled to hear that Jon's parents (Nans and Pops) purchased a little cabin in a beautiful valley in Montana, nestled right along a river. They invited us to use the cabin last weekend, so we drove down and enjoyed three days of peace and quiet... like no cell phones or internet peace and quiet.
Once we got over, what I call, "the twitchy feeling" of not having access to the world wide web, we just relaxed. There is nothing like sitting next to a rushing river, book in hand, and the sun on your face. This particular river, the Boulder, is pretty incredible. I had yet to see it in person, except for bits and pieces in iconic Montana movies (think A River Runs Through It). My pictures won't do it justice, but I still wanted to share a sliver of our weekend.
This little clearing, right outside the doors of the cabin, is where we spent most of our outdoor time. I just love this photo of my boys.

The cabin was perfect for us three. We had a nice little kitchen connected to a cozy living area, two small bedrooms, and a bathroom. No, not super primitive, but we aren't really the camping and toughing-it-out-in-the-wilderness types. Jack had his trusty DVDs to watch and books to read when he was missing home. I finished two books while I was there and even started another! It will be the perfect place to study in the next few months for my exams. Jon read, too, and got to check out the best fishing spots (thanks for the fishing pole and supplies, Cheeks!).

Jack was mesmerized by the water.

And he loved throwing sticks and rocks into it.

Jon was constantly collecting rocks for Jack to throw.

Haha, I appear in one picture out of the hundreds I took. Such is the life of a mom photographer!

OK, so this next thing. A HORSE RIDE!! Thanks to my friend, Lindsay, and her connections with a camp down the road from the cabin, we were able to make such a fun memory with our boy. 

Jack was timid and unsure at first. He would take a quick glance at the horses and then bury his head into daddy's shoulder. He whined a lot, but then was curious. He just didn't know what to think! We took our time just looking at the horses and being around them. They are incredible creatures.

Once Jack got up on the horse, he immediately calmed down and relaxed.

In fact he got so relaxed, that he almost nodded off! What a beautiful day for a ride.

After the ride, Jack got right on the ground, where he usually ends up to get a better feel and lay of the land. By this point, he was feeling good and happy to be around the horses.

Then, to top it all off, he got to feed the donkey, pet the bunny, and see a brand new kitten. The day was pretty much perfect! We don't know if he's a full-blown animal lover yet (we keep trying to get him to like dogs so we can get another one), but it was so fun to watch his reaction to everything.

(Special shout out to Carla and Shelby from Clydehurst Christian Ranch. We had so much fun.)

The next days at the cabin were filled with lots of river watching, rock throwing, sunglass wearing, and s'mores eating.

We even got out on a little hike (thanks Forest Service for wheelchair/stroller accessibility!).

And just lots and lots of rest.

Jon was master of the kitchen/bbq and we ate pretty well! There's nothing like cooking and eating in the great outdoors.

My favorite view out the window in the morning. Ahh.

Wait. Scratch that. THIS is my favorite view.

Until next time, cabin.
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Thursday, June 18, 2015

Remember The Fathers

My husband and I live in San Diego, where he is a pediatric resident at the Naval Medical Center. I stay at home with our brood, and have a degree in Educational Sciences, with an emphasis in Science. Together, we have five children— two biological, two in the process of adoption from foster care, and one foster child. Of our permanent four, three were born prematurely. Our biological son, Caleb, was born at 39 weeks, while our biological daughter, Charlotte, at 23 weeks, our soon-to-be-legally-adopted son, Pierce, at 34 weeks, and our soon-to-be-legally-adopted daughter, Olive, at 33 weeks. Charlotte and Pierce are both trached and use ventilators while they sleep, g-tubes while they eat, and smiles while they melt your heart. Since the soon-to-be-legally-adopted kids are not “officially” ours yet (in paperwork only) I’m speaking only about our experiences around our biological daughter.


Peter had been away, working at the Naval Hospital in Virginia in the weeks leading up to our daughter’s delivery. (Ironically, he was working one of his last OB/GYN rotations of medical school, dealing with the medical emergencies of pregnant women, while I sat in appointment after appointment, trying to hold on to our own pregnancy.) The night he drove home, we ventured out for a short dinner, and in the parking lot of the restaurant, my water broke, and our lives changed forever. That night is hazy in my mind, splotchy moments that I can remember clearly, and completely blank hours that I have never recalled.

But I remember Peter.

I remember him sitting to the left of me, staring at the wall, as I changed into the hospital gown in the triage room. I remember his look, the fact that he knew what was happening before anyone told him. I remember him days later, as I called him from my hospital room, telling him that the time was up, and it looked like she had to be delivered that day. I remember his church clothes, his dress shirt hanging out of the paper scrubs they give fathers prepping for a c-section.

I remember the Sunday afternoons, months and months of them, when he pulled up the rocking chair and waited for nurses to help him hold his baby in the NICU. I remember him planning his outfits so he could transition to Kangaroo Care most easily. I remember him holding her, with his eyes closed, willing her lungs to grow, and her brain to function. I remember the long conversations with the Neonatologists, looking over X-rays and labs.

I remember him bringing her home. I remember the doctor appointments he attended, and the ones he didn’t, because he was busy being a medical provider for other families. I remember the hours he spent arranging her transportation to San Diego.

I remember the nights he slept in the hospital, sleeping in the chair-bed reserved for parents of patients. I remember the questions he asked as a father, not as a medical resident. I remember the desperation, the joy, the fear, and the questions in his eyes.

I remember so much.

People often forget about Peter. They remember to ask me, “How are you doing? How are you holding up?” They remember Charlotte, “How is our little Princess today? What’s the latest with her medical status?”

But Peter is often forgotten.

It’s easy to forget that she has his eyes, and it’s easy to forget that her determination to succeed is 100% her father. It’s easy to forget that he knows exactly which creases to tickle, and that her hand slides into his with ease. It’s easy to forget that when Charlotte is sedated for yet another test or surgery or procedure, she has a father who worries. It’s easy to forget that when she wakes up, she has a dad who sighs with relief.

It’s easy, but it’s wrong.

Peter is not the parent I am. We have different priorities and goals in our parenting, and we don’t always see eye to eye. But I would be wrong if I didn’t shout from the corners of the internet that he’s exactly the father my children need him to be.

That’s an incredible privilege, and I know that. I recognize that many, many mothers are raising their babies on their own. I hope, though, that in recognizing the tireless hours so many mothers put in, we can also take time to remember that many fathers also log those hours, and often do so at risk of being forgotten.

I’m far from perfect, and I often have to remember to remember.

But when I do, oh, the memories I have.

photo by Nina Siebert of Blackbird Ink Photography

(Thank you, Amanda, for so eloquently putting into words how many of us are feeling leading up to Father's Day. -Jessi)
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