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. 

Miracles and Milestones 01/24/2013

Everleigh turned 3 months old this past week! She is growing so quickly, it is both exciting and sad for her parents! Evey, can't you stay as my little baby for just a moment longer?

A freshly bathed Angry Bird

Everleigh has been hitting some big milestones these past few weeks. Even if I had a child with no health issues I would be excited about milestones, but it would not be the kind of event that brings me to tears and drives me to my knees in grateful prayer like seeing Evey accomplish so much has.

Here are a few neat things she has been doing:

-Cooing in response to things we say or do
-Using her arms and hands to bring objects to her mouth to taste (though her fists still don't quite reach unassisted just yet)
-holding her own head up (not consistently, but it will come with time)
-turning her head during tummy time instead of smashing her face in the floor

And, drumroll please............Everleigh has not had any seizures in almost 2 weeks, and has only had 2 since she came home from the hospital. This is a miracle beyond measure!! With an almost seizure free life, Evey has been able to enjoy a much more natural sleep-wake cycle and subsequently has been falling into a nice daily routine. This really helps her have the energy to work on other things and means we see a lot more smiles these days. Hooray hooray!

I hope that when I share these things about our family that it never comes across as bragging, because that has never been the point of our blog. Instead, I hope that our little story is inspiring and a uplifting. Nate and I feel that we have seen so many miracles in our journey with Evey it would be ungrateful to credit Heavenly Father for these events and love to share these events with anyone who is interested in listening.

Chunky Cheeks :)

There are still plenty of challenges we face, but overall things for Evey-Bean are going super well. We could not be more grateful! Thank you for keeping our family in your prayers, we love you all so much. Happy Adventures to you all!

-Nate, Steph, & Evey

Everleigh is home.......Again!

Everleigh is home again!

So happy to be back home!

Everleigh came back home Sunday afternoon, Jan. 5, 2013 from a 10 day hospitalization. We are so happy to have her back home again! What an adventure this hospitalization has been. Somehow even though it was much shorter than the NICU stay, this past visit was harder.  Because the PICU has been so impacted, we rarely had the opportunity to sit down and ask Evey's doctors questions about her conditions, and we always felt like we were re-explaining Evey's unique condition to everyone who provided her care.

"No, she is not seizing right now, she is just agitated."

"Yes, Im sure that Asystole is a normal part of her seizures."

"Yes, we are sure those are actually seizures and not an exaggerated startle response."

I can't tell you how many times we have said those three sentences in the past 2 weeks. But to be fair, Evey's seizure activity is extremely atypical and very terrifying, especially to a new board of professionals who are meeting her for the first time.

Primary nursing is also not practiced in the PICU because most children do not stay longer than a few days. We really missed having our Primary nurses around this time, it was just always so much easier to leave the hospital knowing that someone who knows and cares for our baby like we do is there looking after her. With that said, our baby still received the very best of care from the very best providers. I think the adjustment to the way the PICU functions was hardest on Mommy and Daddy-we got so used to how the NICU functions that we felt a bit out of sorts. The hardest part of this past hospital stay was that  it forced us to come to come to a realization about certain aspects of Evey's life. Many of these things we already knew, but I guess this time it just really hit home.

Allow me to paraphrase a particularly difficult conversation we had with Evey's Doctors.

Doctor: We need to talk to you about setting some long term goals and expectations for Everleigh's care. It is not possible for Everleigh to live a seizure free life, and her seizures are life threatening. As such, we want to know how you want to proceed with her care. She is mostly recovered from the rhinovirus, but her seizures make her a medically complicated child.

Nate and I: We knew the severity of our baby's condition when we brought her home from the NICU and accepted the risks because we believe she deserves a life better than she could live in a hospital bed.

Doctor: We agree, and don't want to keep her here indefinitely, but we need to know you understand and that you are prepared for a seizure that ends her life. That likelihood is higher outside the hospital. Are you prepared for that risk? If she dies at home, will you be able to handle the emotions that come with it?

Nate and I: Yes. As we said, we prepared for such an event before Everleigh left the NICU by
undergoing training in infant CPR and training by her nurses and doctors on how to handle a seizure.
We also have an apnea monitor that alerts us to her seizures so that we can respond immediately. She could die in her hospital bed as much as she could die at home. At least at home she is living a full
life: reading books, playing with her parents, sleeping in her own bed, knowing that she is loved. The
hospital can't provide that for her. We are willing to accept some risk for the sake of her quality of life, however long or brief it may be.

Doctor: I understand. I'm sorry to ask this question, but given the situation, I must: In the event that she does not recover from a seizure while she is here, how long would you like us to Attempt to resuscitate her before we let her go? Some parents like to set a time limit for how long we make rescue efforts because they believe that the resulting brain damage is not worth continuing to resuscitate the child.

Nate and I (I know the look on my face was not very nice, I feel bad for the doctor): Make every Attempt. Do everything. Try as long as you possibly can. We will decide after she is stabilized what we believe will be best for her.

Doctor: Ok, Full Code then. What can we do to support you as you care for her from home? We will keep her on the NG Tube for the time being since you two seem to be comfortable with caring for her with the tube in place. It has been suggested that a tracheostomy for emergency use or at the very least supplemental oxygen and a pulse oximeter would help reduce the risk of her death at home. Would you be willing to consider either of these?

Nate and I: We don't believe a tracheostomy would be of any real help; she can not be forced to breathe during a seizure, and afterwards supplemental oxygen would be just as helpful. She is able to breathe well without help during her normal activities, and a tracheostomy may set her back when
working toward goals like holding her head up. We would, however, greatly appreciate supplemental
oxygen and an oximeter for home use.

Doctor: Sounds great. Lets get you set up so you can take your baby home.


Nate and I: Thanks for your help.

Nothing that was said should have been new news for us, but somehow it became more real. Evey will require constant care and doctors visits until her seizures resolve, or we are putting her life at risk. That was a painful and terrifying reality for Both Nate and myself. Yet somehow whenever we are with our sweet Evey an overwhelming peace surrounds us. She will be alright. That doesn't mean we shouldn't be prepared, but somehow and in some way all of the promises that have been made to Everleigh through various Priesthood blessings will come to pass.  With these blessings in mind, we proceed cautiously but optimistically: she blow away everyone's expectations for her. She is so strong, and so determined, and so sweet. I can feel it in her spirit every time I hold her.

We had another conversation with a support group that Primary Children's Hospital provides called Rainbow Kids. Their goal is to make sure our concerns and wishes for Everleigh are being met, and to brief the doctors on her history and our Plan for her each time she visits the Hospital so we don't have to do this again. Unfortunately, until her seizures resolve, intermittent hospitalization will probably be part of life. It is a worthy price to pay for the life of our dear baby. Every team member of the Rainbow Kids team is very sweet and understanding, and only wants to prepare us for the road ahead. We are so excited to have them on Everleigh's care team!

They really are an awesome bunch. We have been so blessed to have such loving professionals who want to see Evey succeed as much as we do since the day she was born. She is truly in the best hands.

Making cookies with Mommy

Daddy's little helper

We are not waiting for beautiful life moments to occur, we make them happen. Tonight, Evey, Nate, and I made cookies. It was a blast. Also, Evey did her first push up! A great start to holding her head up and rolling over. She was so proud of herself, she smiled. Love it :)

So eat cookies tonight everyone, it's what all the cool kids are doing. Tonight, cookies are a symbol of faith. Life is so simple and sweet, we just want to bask in these tender little moments.

We love you all and hope you are well. Keep us in your prayers! We pray prayers of gratitude for all of you each day.

-Love,

Nate, Steph, and Evey <3