A Mother's Day Miracle 01/22/2014

Patience is a virtue, one that I admire greatly and also find myself severely lacking. So for my first Mother's Day, God gave me the gift of patience and the gift of healing. It is a Mother's Day I will never forget.

We never saw another storm like the one that almost claimed her life. We also knew with a surety that somehow or other, Everleigh would be healed of her pains and burdens. We knew she was here to stay. But with that said, April 2013 was among the toughest months of our lives. After a 24 hour break from neurological activity, Everleigh fell into a pattern of 2-3 storms a day and 20 seizures a day. She was so miserable, and our hearts broke for her every time she experienced a storm or seizure. She was only sleeping about 3 hours a day, and Nate and I were sleeping about an hour a day (and that was with taking turns). We pleaded every day in prayer, sometimes in bitterness, frustration, and sometimes in humility, for her suffering to end.

Our family was falling apart- Everleigh was clinging to life, our marriage was really suffering, we were nearing financial destitution, and Nate and I as individuals had sacrificed everything to care for her. Nate withdrew from school so he could stay home to support Everleigh through her suffering. She needed her Mommy and Daddy all the time. I forfeited my only chance to return to figure skating. We both would go days without showering or eating more than a bowl of cereal. We stopped going on dates. We liquidated our emergency savings and Nate's retirement fund to pay for thousands of dollars in medical bills and to support ourselves while Nate was on break from school and work. Our lives stopped for those few months, and we hoped, and pleaded, and prayed together that things would get better.

The week of Mother's Day, we finally reached our breaking point. Everleigh had started to have seizure clusters of 6 seizures in 10 minutes, bringing her count to 40 seizures a day in addition to the 2-3 storms she was experiencing every day. We couldn't do it anymore. It was time to go back to the hospital and see if anything could be done. Our attending pediatric team was shocked by Everleigh's condition, both by how severe her deterioration was and that she had somehow clung to life for so long. They recommended immediately placing her in a medically induced coma. This was not a plan we wanted to follow. But thankfully, when we arrived, Evey's sweet neurologist, Dr. O, was ready. She came into our room and presented a bold plan and simply stated that she was not ready to give up yet. She proposed a series of tests and radical changes to Everleigh's treatment. The tests revealed that Everleigh had a rare strain of UTI that would require immediate treatment and could account for some of the increase in seizure activity.  The tests also revealed that Everleigh was suffering from malnutrition, bone deterioration, and severe bowel irritation as a result of the ketogenic diet. So, in a matter of 24 hours, Everleigh was taken off the ketogenic diet and put back on normal formula, taken off 4 of her 6 seizure medications, and given a thorough antibiotic treatment. We prayed and waited with nervous anticipation to see how Everleigh would react. Our wonderful Palliative Care Support group came with words of encouragement and love as we waited. Thank goodness for their love and strength! We just didn't have any left.

We will never give up, baby girl, never!

And then it happened. It was the night of Mother's Day. Everleigh slept through the night. Then 24 hours went by without a single seizure or storm. A great easiness settled into her countenance-the swelling in her body subsided, her breathing returned to normal, her heart rate resumed a normal pace-she was no longer in pain. She was resting, really resting! Our miracle had come again! With tears in our eyes we celebrated what we had scarcely hoped could be possible-complete relief from 2 months in neurological hell. What a precious gift for Mother's Day!! I had my baby back.

2 weeks post hospitalization; Evey got her first taste of an orange creamy and loved it! It was her first bite of food in over 2 months

We were discharged and returned to visit Evey's neurologist a week later, who proposed one more change-adding an archaic seizure medication that, though risky, might just preserve Everleigh's incredible progress. Ladies and gentlemen, that woman is a determined genius. She saved our baby's life. We contacted her later in the summer to let her know that Everleigh had not had a single seizure or storm since we started the new medication. Everleigh was back to living the life no one had expected was possible for her. She was a living miracle and medical anomaly. We couldn't be more grateful! Her neurologist was overjoyed as well!

Its been 8 months since then. To this day, Everleigh has not had another storm and has had only a handful of seizures. I have found great consolation in the idea that even though this wasn't very long ago, sweet Everleigh does not seem to have any memory of this time in her life. But Nate and I will always vividly remember these times. Does she still have health issues? Definitely. Her battle isn't over. While Everleigh is enjoying great seizure control, her epilepsy is still alive and well, and the possibility of this happening again is ever present. Everleigh also has to struggle with muscle tightness and weakness, severe developmental delay, chronic lung disease, and the constant battle with acute illnesses. But she spends the vast majority of her days with great joy and without pain. She is back to making progress and continues to have an infinite enthusiasm and curiosity about life. Everleigh is a living testimony of the infinite goodness and miraculous power of our Heavenly Father, and her journey has forever changed us for the better. We love her so much.

Thanks again for reading and hanging in there with us!

The Veil Was Thin 01/22/2014

I want to share a particularly difficult time in our lives, a time when everything fell apart. Why? Because I have never experienced anything so difficult before, and never have I seen such miracles. Truly, our lives from this time on have been forever different.

My sweet little trooper

It started at the end of February 2013, when Everleigh went to the doctor's office for her second round of vaccinations. We knew from our first experience with vaccinations that things would likely be difficult, but we felt better prepared. Everleigh had her typical fever and fussiness, plus some seizure activity. We hadn’t seen any seizure activity in 6 weeks, but we were not surprised by some small activity following vaccines. But after 48 hours, it seemed to resolve, and Nate and I breathed a sigh of relief. What a little trooper! We’ve got this!

But a few days later, Eveleigh’s body turned against itself. A sudden autoimmune reaction, likely triggered by the vaccines, caused her to go from living a seizure free life to 20 seizures a day. She also developed a new and highly disturbing neurological phenomenon known as autonomic storming. Her heart rate would shoot up to the 230’s, her respiration rate in the 100’s, and her body would swell until she looked as if she would burst. These episodes would last 2-3 hours at a time, and it was obvious that they would leave her in excruciating pain, pain that 2-3 doses of IV morphine couldn’t touch. We brought Everleigh into the hospital after her first storm-we had no idea what was happening to her and couldn’t make it stop. She ended up staying for six weeks. During that time, her very committed team did everything they could to try and help her-new medications, steroids, the ketogenic diet-nothing was helping. It was just getting worse, and at an alarming pace. Everleigh began losing the skills we had worked so hard for-she couldn’t take even a sip from her bottle without choking, she stopped moving her arms and legs, couldn’t hold up her head, and could no longer smile or laugh. She could only communicate with her eyes, and all she wanted was for us to hold her and make it stop. Then, one morning, a neurologist from her team, Dr. M, came to see me. I was by myself and holding Everleigh during one of her precious naps, admiring how peaceful she seemed. The doctor sat down and,  as gently and kindly as was possible, gave me the worst news I have ever received: our sweet baby was dying, and there wasn’t anything left to do for her. She wasn’t responding to the most radical treatments, was too young for any therapeutic surgical procedures, and medications from every class of anti epileptic drug had not helped her. The neurologist explained that because of the intensity and progression of Everleigh’s neurological issues, she would either pass away from excessive brain damage or her little heart would give out under the combined strain of asystolic pauses during her seizures and the extreme tachycardia during her storms. We had 3 choices: we could surrender her to medical foster care where they could attempt to keep treating her through IV therapy (which so far had been unsuccessful), we could have her placed in a medically induced coma (which she may never wake up from), or we could take her home and enjoy the few weeks she had left with us. The choice was obvious. She was coming home so that she could pass away in peace and surrounded by her loved ones.

The hardest decision we ever made was to come home

Later, Everleigh’s Primary Care Pediatrician, Dr. SF, made a special stop by our hospital room to extend her condolences, offered to continue supervising her care once we got Evey home, and advised us to call our families. It was at this time that we opted to have her g-tube (surgically implanted feeding tube) placed, so that we could provide her with the best care from the comfort of home that was possible. My family arrived from California 2 days later, and we spent Easter Weekend celebrating the life of our sweet baby and the eternal promises made by the life, death, and resurrection of Jesus Christ. The next Friday, it was time to bring Everleigh home. We had everything ready to go and were about to put her into her car seat when she went into another storm. Nate and I decided that we would wait in her hospital room until the storm ended so she could ride home as comfortably as possible. Our nurse agreed, and held off on officially discharging her until we were ready. 3 hours into the storm and after having used all of her rescue medications, the storm wasn’t showing any signs of abating. We called the night Pediatric Resident, who said he couldn’t offer anymore meds or support for her. Nate and I began to get super worried-Everleigh had never had a storm over 3 hours long. At the 4 hour mark, Everleigh began throwing up blood and still showed no signs of coming out of her storm.

Hang on just a little bit longer

Nate and I felt suddenly overcome by an undeniable feeling-it was time to go home, or she wouldn’t make it in time. She was being called back and her time with us was almost gone. The veil was thin. It was a strange feeling: terrifying, yet peaceful. Nate gave her the most painful and courageous blessing a father could give. He commended sweet Everleigh back into the arms of our Heavenly Father and gave her a choice. If she wanted to, she could return to heaven and have her pains and burdens forever lifted. But if she wanted to keep fighting, Mommy and Daddy would do everything to care for her and give her the best life possible. We sobbed as we carried her in our arms to the car, followed by a sober caravan of the nurses who had loved and cared for her the past 6 weeks. We said our very solemn goodbyes and loaded her into the car.

We got home at 2am. As we walked through the parking lot, down the path towards our apartment, we passed the playground. Nate stopped, took her from my arms, and proceeded to go down the slide twice. We snapped a picture of the only promise we could keep-that she would one day play on the playground like the other kids. We brought her inside, got her equipment set up, swaddled her, and laid her in our bed where we held her, and sobbed, and waited.

Going down the slide

Hittin' the playground at 2am

Keeping one last promise

At 6am, 8 hours after the storm had begun, our prayers were answered and our miracle arrived. The storm finally broke and Everleigh fell into a deep sleep. If she had not been wearing her heart monitor, we would have thought she had passed. With grateful tears in our eyes, Nate and I squeezed each other’s hands, kissed her on the head, and fell asleep with her in our arms. She slept for 18 hours and enjoyed a full 24 hours with no neurological issues. We knew then that she had chosen to stay, chosen to fight. We gave her to God, who mercifully returned her back into our care. We have lived everyday since then tyring to keep our promise-to give her the best life we can.

Do I know why things happen? Not always. Sometimes I wonder and ponder to myself, and these are the answers I have found:
This night plays in my mind everyday. It reminds me to be grateful, to be faithful, and increases my love and admiration for our precious girl and for our Heavenly Father ever more. Is God really there? Yes. Does he hear and answer prayers? Yes. Are families forever? Yes. Can we do hard things? Yes. Have we been blessed? Infinitely.

Thank you for the love, prayers, fasting, and service that have been given on behalf of our family. This miracle is as much yours as it is ours. We love you all so much and pray for you all daily. We think of you, and miss you, and cherish you deeply.


I know that I can say that we stand stronger than ever, our conviction ever rooted in Jesus Christ and in the plan of a loving Heavenly Father, and find reasons to have joy everyday because of this experience. Treasure every moment my friends, for each is precious. Thank you for reading, dear friends and loved ones.

A Return to Writing 01/22/2014

It has been almost a year since I last wrote on the blog, and what a year it has been! 2013 was a year full of so many challenges and so many miracles.

Blogging is a form of writing, and for me, when I write something down I am accepting it. I am recording something I want to remember, and all the emotions that come with it. The truth is, this past year we had some serious struggles, struggles we couldn’t bring ourselves to accept and definitely didn’t want to remember.  So, I stopped writing. Easy fix, right?

Well, I have also spent the past year praying for the ability to forget and leave behind these experiences. Because honestly, I still remember these difficult moments every day, and it still hurts. They still scare me. But I have recently come to the realization that I am not supposed to forget, I need to remember-the hardship, the pain, the miracles, the lessons-they have permanently changed me.  They have brought me maturity, understanding, empathy, and some growing pains too. So, I am back to writing.

Some of my following posts are going to be tough to write and probably tough to read, so if you want to pick and choose which ones you read, I understand. But it's time I embraced and remembered the past year for what it was-the year that changed my life.

Catching Up with Nate & Steph

My recent posts have almost all been about our sweet Everleigh, who is so much fun to write about. However, I thought it might be nice to have a post about Nate and myself, just to mix things up. So! Nate and as thought it could be fun to share something about ourselves you may or may not know. Just for fun.

Nate:

Nate has a very specific pet peeve about spoons.  He does not eat at all with little spoons. By little, I do not mean baby food spoons or teaspoons, I mean your average sized cereal spoon. He says they just don't hold enough food in one scoop to satisfy his needs. Nate needs a small serving spoon or larger to consume his cereal, soup, and other spoon-requiring meals. It's true. We only have a few that size, so certain spoons may be washed several times a day to ensure an adequate sized spoon is always available. It's one of the funny, quirky things about him that makes me laugh and love him all the more. Beware the little spoons my friends.

Nate is also a huge history buff, though he particularly loves American history. He loves learning about war tactics, presidential platforms, and everything in between. It's funny-Ill tell him to pick a movie for our date night at home, and he'll ask what I am in the mood for. I'll say something like "drama" and will later come out and find a lovely documentary about Ulysses S. Grant and Civil War tactics ready for our romantic consumption. "What, it was a very dramatic time for our nation!?" he will exclaim. I'm starting to get hooked too, though some of the war documentaries are still a little too intense for me. History really does have a lot of interesting things to teach us.

Steph:

I am a huge Harry Potter fan. The books, the movies-all are awesome! Weird perhaps, but not any more weird then my Star Wars, StarTrek, Downton Abbey, and Twilight loving friends. Im not to the point of dressing like a wizard or practicing my spells with a wooden spoon (though I do have to admit that light saber fighting is much cooler and quite fun). I just enjoy the story! Nate indulged me and bought me the Blu-Ray collection for Christmas, and we had a marathon over the break. Ahhh, good times. Evey will be indoctrinated and converted as well, as soon as she is old enough to understand the story. She will also be a Star Wars fan if her Daddy has anything to do with it. What a happy, nerdy family we shall be :)

I also love gardening! But I particularly love to grow pumpkins. It's a bit of an obsession really. I believe I inherited this obsession from both my Moms own obsession with pumpkins and the fall season as well as my Grandpa Bullock's own obsession for growing squash. There is just something so neat about seeing a tiny flower turn into a huge pumpkin! I always feel accomplished when the time comes to pick my pumpkins. In 2011, I accidentally cross bred pumpkins with a few other large melons, and created the following oddities: Pumpermelon, cantepump, Cumbermelon, and Cupumper. The moral of the story: don't grow pumpkins, summer squash, cantelope, watermelon, and cucumbers close enough together that the flowers can touch. The cross breeds tasted horrible, but made the most interesting Jack-o-lanterns. Pumpkins can account some of life's great joys: pumpkin pie, pumpkin chocolate chip cookies, jack-o-lanterns, squash soup-the list goes on. My biggest ambition: I want to grow a giant pumpkin. A 1000+ pounder. They are a specific breed of pumpkin and apparently it takes years of practice, but I am so pumped about it. When I finally accomplish a 
1000+ pound pumpkin, I shall honor it by hollowing it out, turning it into a single person boat, and 
entering it into a pumpkin regatta. They are quite popular along the Great Lakes and along the East 
Coast. Oh pumpkins. I just love them! I'll have a garden again one of these days!

Nate & Steph:
As a couple we can be an odd pair. We love quoting movies, youtube videos, and Internet memes. If you seem to be spending a suspicious amount of quality time with an electronic device, you may be accused of being a horselime, because, "On the Internet, no one knows you're a horselime." I will in fact be a horselime for Halloween this year. It's going to be amazing. If ever there is an argument and either Nate or myself says "Shut Up!" And puts their paw in the air, it's not an insult. It's just Jupiter the Cat telling you to chill out. Check it out!

http://m.youtube.com/watch?v=-qPGHn4iHKk 

Somehow random quotes and References keep us laughing and help dispell excess stress. So if you ever hear a familiar scripted conversation, feel free to jump in and start quoting! Now you know something random about us! I guess you learn new things everyday.

 

 

I'm not sure why we find this so funny, but it gets us laughing every time!

Awkward Family Photos of Nate and Steph.......

Nate and I both seem to be doing better now that Evey is having more good days than bad days. Not having to spend our time at the hospital, combined with better lighting and adequate space in our apartment, has really boosted our emotional well being and lowered our stress level. We have even had time to have a little fun. Nate and I went to our Stake Valentines Dance this past weekend and had a wonderful time! Nate did, however, leave me hanging when Gangnam Style came over the speakers. I did the whole dance by myself! It was pretty epic if I do say so myself. I did mess up 
Nate's Viennese Waltz though.......but I sure tried my best. We both laughed, and tripped, and had our hearts lightened more than they have been in a long time. The best part? We went home to our happy, sleepy baby (Thanks Grandma and Grandpa and Aunt Leah for babysitting!) instead of the hospital and said family prayers.  At least for a moment, life slowed down to let us enjoy the sweet miracle of our little family. What an awesome blessing.

We are so grateful for every blessing we have received. The gospel of Jesus Christ really does bring happiness even at the hardest of times and will never lead you astray. Thanks for reading! 

-The Knightons!

3 Big Doctor Appointments 02/11/2013

Everleigh is coming up on her 4 month birthday next Monday, which means she got to meet with all of her specialists this past week. We were pretty nervous, but excited to see how her doctors would react to her progression. Everleigh is not the same baby they met in the NICU or even the PICU. She has really grown physically and developmentally so much in the past few weeks!

A temporarily tube free cuddle bug

Pediatrician:

Evey now weighs 12 lbs. 5 oz. and is 23.5 inches long (Her legs don't quite extend all the way, so she is probably closer to 24 in. long). Her growth rate is right on track, despite all the feeding issues we've experienced. What an amazing blessing! She is now fitting comfortably in her 3-6 month clothes. Evey is also ready to start eating from a higher flow nipple, which we hope will boost her bottle feeding percentages. Most babies at about 4 months of age are also ready for their first solids-rice cereal. However, Evey's feeding reflexes are still a bit immature, so we won't get to start her on rice cereal yet. We are, however, supposed to be watching her closely and working with her Occupational Therapist to get ready for that next big step. Nate and I hope that once she can enjoy some rice cereal that she won't have to depend as much on her bottle feeding skills to meet her daily nutrition needs and hence can start preparing to come off the NG tube. Her bottle feeding right now is improving, but still not enough to go without the support of the NG tube. Evey is also preparing for her next round of vaccines, which we have had to put off several times due to illness and her seizures. Hooray for getting back on track, even if only a step at a time!

Short term goals:
-Experiment with higher flow nipples to encourage higher bottle feeding percentages
-observe and prepare for solids
-continue tummy time and physical therapy
-stay healthy and seizure free

Neurology:
Evey's neurologists are so happy with her seizure progress. We have officially been seizure free for one month! It is truly a miracle and answer to prayers. Without seizures, Evey has been able to make so progress. When the doctor saw her, she said, "Are you sure that is the same baby, did we send you home with the right one? It sure looks like her but she is a new baby! What are you doing to her?" I cannot think of higher praise we could receive. Evey is definetley still struggling with muscle tone issues, but even since a month ago she has shown great improvement. If all continues to go well, we are to return in 3 months and talk about slowly weaning down her seizure medications. Hooray hooray!

Goals:
-Continue to go seizure free
-continue exercises to improve flexibility
-continue cautiously with vaccinations and watch closely for seizure activity

This is what seizure-free looks like!

Rehabilitation and Movement:

Evey's Rehab doctor gave us the most to work on, but provided some words of encouragement as well. Everleigh is beginning to hold her head up, though she struggles with controlling it. Evey is also very tight in her shoulders, which is limiting some strength and mobility in her neck. We have been given a new set of exercises to add to her daily regiment to help improve the muscle tightness. Even after a few days, she is already looser in her shoulders! Hooray! However, if in a few months there is still significant tightness in her muscles, we might have to consider adding a new medicine to help. but we are hopeful that it wont be needed. The good news? Everleigh's doctor says that if she can sit up unassisted by age 2, she will walk by age 5. She is already on the right track! One of our biggest ambitions for Evey has been eventually walking and playing on the playground. We feel so blessed and uplifted by this prognosis. 

Goals:
-continue working on tummy time to strengthen the neck and trunk
-stretch shoulders and neck everyday in hopes of gaining a full range of motion
-work on holding head up and helping Evey's body learn the motions of rolling over
-continue to work on feeding

Overall, Evey had an awesome round of check ups! She is truly our miracle baby. She is making such rapid progress and gets a little better everyday. Thank you, thank you, thank you for all of your love, prayers, and support. We love you all and thanks for reading!

-Nate, Steph, & Evey

Evey's Favorite Things 02/11/2013

All dressed up!

Everleigh has developed so much in the past month, she is not even the same baby. She is growing so quickly and has become so busy! She has been blessed with an active and curious mind that is always on the go. Evey loves to be held and walk around to look at things, to touch new things, and most recently, to taste new things. For the past week or so Nate and I cannot sit down to eat without her asking to eat too. She is not one to be left out. Evey's pediatrician believes solids are still a ways away for her, but that has not stopped her from trying to taste new foods. Nate and I have been a bit naughty and indulged her a few times by giving her just a drop or smudge to taste new things. Here is how the record stands so far:

Loves:
-Orange Julius
-Bean Dip
-chocolate frosting

Indifferent:
-Ice cream
-cheese sauce

Hates:
-tomato sauce
-mild curry
-ice

We are hoping she warms up to the curry, it's one of our favorites. Evey has also discovered the joy of sitting snuggled up in a pile of warm laundry. She smiles the whole time! We also have recently been taking her outside just for a minute or two when no one else is around to see the snow as it is falling. Evey finds this completely fascinating and loves it, as long as it does not get in her mouth. She seems really sensitive to cold sensations. Going to see the snow with Daddy is a very special treat for her after she has worked hard on her exercises.

Future Ambitions

Here are a few other awesome things Evey has discovered this month that always make her day:
-riding in the stroller to the doctors office
-dancing with Daddy
-Dinosaurs! Who knew? (she and Daddy read dinosaur books and play "Dino Walk" all the time)
-bouncy seat
-soaking in the bath tub
-the vacuum (apparently its quite soothing...)
-Fantasia 2000 (I think she really likes the music-Beethoven's 5th is her favorite selection)


It has been so neat to see her little personality blossom. We love Everleigh so much, she gives us a reason to smile everyday. 

Bow Tie Pasta 02/09/2013

A cute little experience from earlier this week :)

Evey has turned into such a little socialite. She loves attention and loves to be a part of everything we do. Most of all, she loves to have things explained to her and to be an active participant. A few nights ago Nate and I were cooking one of our favorite dishes, skillet lasagna, and Evey really wanted to help. However, we didn't want her to be near the stove, so we gave her a piece of bow tie pasta to hold so she could be a helper from the safety of her high chair. She loved it! She gripped it all by herself and looked at it until she found something more interesting. It might seem like a small thing, but to us it was a big deal. Her grip has been so weak in the past that we have always had to help her hold things, especially smaller items, so this was a big deal. It's amazing how "by small and simple things great things are brought to pass". Even as small and simple as bow tie pasta on a Friday night.