The light at the end of the tunnel 11/29/2012

This past week has been so humbling for our little family. I know that I have recently begun to feel emotionally weary and at times frustrated by our circumstances. I have felt my hope and optimism give way to anguish and fatigue as time passes. Today marks Evey's 6 week birthday, 6 weeks in the NICU, and 6 weeks of leaving a piece of my heart in the Hospital. I have never lost the knowledge and comfort that Everleigh will be alright, but my pain has been rooted in my own impatience.

I love you to the moon and back, Evey Bean!

This week started with two sore throats and two bummed out parents-any sign of illness means we cannot visit our baby. We have spent the week getting Nate to class and the remainder of our time in bed trying to recover from the flu. We sought Priesthood blessings for ourselves and for Everleigh, who has been miraculously blessed to be as healthy as can be! Yet as I have spent time pondering my feelings, I have developed a deep gratitude for what we have been given and have experienced a new realization of all the many blessings we have been bestowed. As I laid in bed and trolled Facebook out of boredom, I somehow came across several pages that families had created for their sweet children who were facing many struggles of their own. Many of these children face far worse health issues than Evey and yet seem to emanate such love and hope.  I cried when Evey needed a Spinal Tap, but I can only imagine the tears of anguish Mommies must cry when their babies need open heart surgery, brain surgery to release cranial pressure, or  the indescribable pain of burying their precious children after only a few short days of life. How blessed am I to know that my baby will recover from her health problems and to know that I will eventually be able to bring her home ?! More than words can say. Another prevailing feeling I have felt developing in my heart is a sort of resentment towards some of the staff who have been treating our baby.  They have all been brilliantly skilled, professional, unfailing kind, and delicate, but at times the suggestion of more testing and a lack of answers has left me feeling as if they must not care about how much my baby suffers. How could they understand? After all, she is not their baby and they must all have healthy, average children. How wrong my thoughts have been! How far from the truth my feelings have lead me. One lady who works for the March of Dimes saw that I was having a rough day asked about how Everleigh was doing. As I described some her health issues, this sweet woman began to share the story of her own daughter who had been born at 22 weeks gestation and stayed in the NICU for 5 months before she could bring her home. Her daughter also had brain damage due to a traumatic birth, but she reassured me that even though she had to work hard for her milestones, her daughter did everything a child should do-run, talk, eat, play, even ride horses. On a separate occasion I found myself at the sink "scrubbing in" so I could see Evey and feeling so distraught that I could not keep the tears from running down my cheeks. Her Occupational Therapist passed me on the way into her room and embraced me and began to cry too. For a moment we held each other and cried, as she told me she wished there was more she could do for Evey but felt reassured that things would get better for her. I have been so touchd by the compassion that has been shown to us and so ashamed that I allowed myself to feel differently. We are truly so blessed in every way, as is our precious little girl.

We have never been alone this journey, though the adversary would have us feel otherwise. We have been surrounded by loving friends, family, healthcare providers, and by a loving Heavenly Father and our Savior, Jesus Christ. He suffered all things so that he could comfort us when we need it, and to truly empathize with our struggles. I am so grateful for the healing power of the Atonement in our lives, it is truly our greatest blessing.

Though we have not been able to see Evey at all this week, we call her nurses every day to ask about her progress. She is doing very well and continues to be stable in terms of her seizures. Everleigh's neurological Team called us and asked if we would be able to meet privately to discuss her progress. We were able to meet with them this afternoon and finally received the results of her many panels of tests: her Spinal Tap came back normal, her blood panels came back normal, and her Hyperekplexia test came back negative. Nate and I were so sure that what Evey was experiencing was Hyperekplexia, we felt a little bewildered by her diagnosis. But after some research, the diagnosis fits: Evey's doctors have concluded that her seizures and tremors can be attributed to her Hypoxic-Ischemia injuries and a subsequent condition called a brainstem Reflex Reticular Myoclonus (what a mouthful!). While we are still researching and learning more about this condition, almost every article we have come across seems to direct us to two conclusions. The first conclusion is that this is not a Genetic disorder but a circumstantial disorder and therefore cannot be passed to other children, which is a huge relief to both Nate and myself.  It is extremely unlikely any of our other children will experience issues like this. The second is that even though this is not Hyperekplexia, it is grouped in the same class of disorders and has extremely similar symptoms and outcomes as Hyperekplexia. This would explain why her issues seem so much like Hyperekplexia but are really a different disorder entirely. Armed with this knowledge, Everleigh's doctors have established what they call a "Therapeutic" or acceptable threshold of seizures that she can experience in a 24 hour period and be considered stable. With her medications also at the perfect balancing point between sedation and controlling her seizures, Evey can have between 0-6 seizures a day and still be considered stabilized. With this standard set, she has been stable for 1 week. Her doctors expect that this will improve with time and believe her chances of growing out of her seizures is good and will follow up with her every few months unless she presents with any dramatic changes. Everleigh has been given the clearance by her neurology team to come home!! That leaves only 1 goal left for Evey to meet-to take her feedings completely by bottle.

Because Evey's seizures and medications make it difficult for her to meet her goal of 100% bottle feedings on a daily basis, it could be several months before she meets this goal. Everleigh is also developing very mild oral aversion, or an aversion to having things placed in her mouth when she does not want anything in it. This usually happens when a binky has been too quickly or too often offered and decreases a desire and patience for oral feeding.  While Evey's is an extremely mild case, it does represent another set back to her feeding goals. Evey's doctors believe that her feedings will greatly improve when she comes home, and would like to meet as soon as possible to discuss feeding options for when she comes home.  The two options we will likely be presented with are coming home with a nasogastric (NG) feeding tube or coming home with a  gastrostomy tube (G) feeding tube. In both instances Evey will continue to bottle feed, but the remainder of what she is unable to eat will be given to her through her feeding tube until she is able to meet her daily feeding goals completely by bottle. In both instances we will also have to learn to replace and maintain the tubes from home, which will be a little challenging. It is a challenge we will gladly accept for our baby. It is our most sincere hope that we will be able to come home with only an NG-tube, as it is non invasive as can be easily discontinued when she is ready. A G-tube would have to surgically implanted directly into her abdomen and represents a diagnosis of long term tube feeding, which we don't feel Evey needs. Please join us this week as we pray for her to only require an NG-tube and for us to have the competence and patience to learn to place and maintain an NG-tube for her at home. Either way, we have been told that we may be able to bring her home in as little as two weeks!!

We feel so grateful and so blessed for this eventful week. It has been a long journey, but we have only just begun and can't wait to have her home with us. Nate and I put up the Christmas Tree and left a few ornaments out for Evey to hang when she comes home. The Holidays will be so much sweeter with our little family all together, and we are bursting with joy to the point of tears at the thought.  Thank you so much again to everyone who has so lovingly prayed for us, fasted for us, and endured with patience all our mood swings, missed phone calls, and grumpy moments. We love you so much and hope to have more pictures and good news to send your way very soon.

-With love,
Nate, Stephanie, & Everleigh Knighton

Happy One Month Birthday Evey-Bean! 11/24/2012

Baby Everleigh is a month Old!

This kid loves to eat!

The past two weeks have been filled with highs and lows for our little family. Despite our suffering, we have much to be grateful for and hope to make that the focus of this post.

Everleigh celebrated her 1 month birthday this past week. Happy Birthday Evey-Bean! She is growing so much. She now weighs 8lbs 5oz. and is 20 inches long! She is turning into a big girl right before our eyes. It has been a bittersweet experience-we love seeing her thrive and grow into the sweet little girl she is, but painful because we have essentially been raising our baby from her hospital bed. We have been continually flooded with love and support from our friends and family, and are so grateful. That has kept us going when have we felt the crushing anguish of seeing Evey endure seemingly endless amounts of tests and seizures. Just yesterday Nate received a package from his friends in Ridgecrest filled with treats, gift cards, and well wishes.  Our eyes both filled with tears as we read the card and felt the love of our dear friends. Thank you again, Team Noble! We are so grateful for the support and concern of our loved ones.

Sweet Everleigh continues to make wonderful progress. She only has 2 goals left before she can come home, but they are her biggest hurdles yet. As always, please keep her in your prayers and I promise you will continue to see miracles.

Everleigh's Accomplishments:


Aside from her seizure activity, Everleigh is a healthy and thriving baby. She seems to get bigger every time we see her and has an insatiable appetite! She has been taking 70% of her feedings by bottle, which is a major improvement over the 30% feedings goal she was working on just last week. She almost never chokes while she is eating, and has a strong cough that gets her airway clear when she does. Her eagerness to eat is so strong at times that when Nate or I try to take the bottle away to burp her, she will lean forward, bite the nipple, and bring it back into her mouth so she can continue her meal. She also gets so excited while eating that her breathing gets nasally and sounds like snorting. We have coined another nickname for her-Piglet.

Everleigh's motor skills and tremors are also making vast improvements. We have seen so much more arm and leg movement! She even has been making more deliberate movements, such as playing Patty-Cake with Daddy and grabbing her toys. Our Occupational Therapist gave us permission to start bringing small toys for her to play with. So far her favorite toys are a mirror to admire herself in and her cloth balls with bells in them, though she was quite disturbed by a Hippo Rattle we presented her with. Here eyes got really big and she pulled her head back as if to say, "Seriously? What the heck is that?" Play time is her favorite way to spend time with us when we visit her. Evey is always smiling and even giggled for the first time this past week when Daddy tickled her.

Everleigh enjoyed her first bath this past week. She loved every moment of it! Apparently the warm water and gentle rub with a rag are very soothing to her, so soothing that upon returning to her bed she was sure to soak her bedsheets so she could could get back in the tub. She smiled and cooed all the way through bath time and went right to sleep afterwards.  Nate and I were concerned that because bathing is such a sensory experience that she may hate it. We are so pleased she enjoyed it! We have decided we will enroll Evey in swim lessons and water therapy this coming summer.

So precious! She had grown so much that I couldn't button her blessing dress in the back. Nobody noticed! :)

Beanie Blessing

The sweetest highlight of the past week was Everleigh's baby blessing. We decided to have her blessed over Thanksgiving Break when we would have as many of our immediate family members together as possible. Because she is still in NICU, we had to make special arrangements for her blessing and were very limited as to who we could invite. We were not even sure she would be able to wear her blessing dress or if anyone except those administering the blessing would be able to be present for the blessing. But things came together beautifully. On Sunday, November 18th (Everleigh's 1 month birthday), at her bedside, in her blessing dress and surrounded by her family, Everleigh received the most beautiful baby blessing my ears have heard. I can truly say that I have never felt closer to heaven nor have I felt the presence of Angels more strongly than I did at that moment. She is such a sweet and special child of God. She is beloved by her family, many dear friends, and her Father in Heaven. The feelings I felt during her blessing are feelings I cling to when things seem so difficult. Thank you to all those who made her blessing possible and all those who wished they could come but were not able to. We love you and are grateful to you.

Our sweet baby brings us such joy every time we see her. We can't help leaving the hospital with more peace and comfort than we came with. While she is progressing by leaps and bounds, we still don't have an idea of when she can come home. Evey still has some significant challenges to face before she will be ready.
Everleigh's Challenges:

The past couple weeks have been filled with highest highs and lowest lows. Evey's seizures continue to plague her and hamper her ability to eat every meal by bottle and to meet her developmental milestones. Her doctors have been running panel after panel of tests to determine what could be causing the seizures, but every test has come back normal.  While we are extremely grateful for this, it has also become frustrating to watch her endure so much and not be any closer to a solution. One of the tests she had to endure this past week was a spinal tap. This was something I had prayed she would not need, but it was deemed necessary to ensure nothing was being missed. I sobbed the entire day. Nate had to pry her from my arms and hand her to the doctors, which I believe earned us a boot out the door and into the waiting room. Sorry Evey-Bean :( But I know everything happens for a reason, and I hope and pray that the results of the spinal tap will provide the doctors with some useful information. The results should be back sometime next week. Evey endured the procedure well and slept for the remainder of the evening.

At this moment, there are 2 plausible causes of her seizures that are being investigated.The first is a rare genetic disorder called Hyperekplexia. People who have this disorder have an extremely exaggerated startle response, which manifests as jitteriness, tremors, extreme sensitivity to stimulus, and posturing events. These posturing events are characterized by a brief period of total body stiffness, and in some patients, holding their breath. Evey's seizure events match the description of these hyperekplexic events, as well as many of her other neurological difficulties. Often this disorder is misdiagnosed as Epilepsy or Cerebral Palsy, which I found very interesting as we have been told her MRI has certain characteristics of people with both diseases. The good news about this disorder is that most people grow out of it, with the first year of life being the hardest and the following years having a relatively normal progression of development. Here are some articles that better describe Hyperekplexia in detail:

http://www.ncbi.nlm.nih.gov/books/NBK1260/

http://ghr.nlm.nih.gov/condition/hereditary-hyperekplexia
I was discussing the details of the disorder with my Mom, who informed me that my sisters and I all had issues as babies that can be described as Hyperekplexia. Because the research on this disorder is still very new, 20 years ago this disorder was never tested for or treated. It also occurred to me that there were many times in the womb when Everleigh would go board stiff for about 20 seconds and extend her arms and legs with such force that I could see the outline of her feet by my ribs. I always believed she was just stretching her arms and legs because she was getting big and running out of room. However, after watching and comforting Evey through several seizures, the memory of her forceful stretches came to my mind and it was as if i could still feel her doing it, and that this must be what it looked liked when those events ocurred in utero. If these were really posturing events, then perhaps her seizures were not really caused by birth trauma. Perhaps the neurological effects of these events could have contributed to the brain damage that resulted from her traumatic birth (her heart rate often dips very low during her seizures). We will get the blood work back in a couple weeks that will tell doctors for sure whether  or not she has Hyperekplexia.

The second plausible condition Everleigh might have is reflux. This condition is extremely common in babies, characterized by spitting up, digestive irritability, and "colic". That is why burp rags are a standard part of any baby's repertoire. However, because of Evey's extreme sensitivity, the reflux may be very painful and result in a seizure. This would make a lot of sense as well, as many of her seizures seem to have no external triggers and always happen in a deep sleep. The fix is actually very simple-baby Prilosec and Mommy watching what she eats that could affect her breast milk.

Nate and I truly believe that what Everleigh is experiencing is both Hyperekplexia and reflux. She has a family history of neurological sensitivity and posturing, typical seizure medications do not seem to be helpful to her, and her seizures have a variety of triggers. Often times the seizures that seem to have no triggers are immediately preceded by wet sounding burps, huge spit-ups, or huge bowel movements. Thankfully Evey is starting on reflux medication this weekend, and we are hopeful that this will greatly reduce the amount of seizures she is experiencing. We trust her doctors and have said many prayers of gratitude for their expertise and for the Lord's inspiration in guiding them to look into all possible causes of her seizures. It has been such a blessing to be at the University Hospital and to be surrounded by such wonderful doctors and professionals of the field.
This week, we ask for your prayers for her doctors to be inspired to find the right medicine, and prayers to help Evey endure her seizures with comfort and peace. We love her so much and have shed many tears on her behalf as we have watched her so bravely endure her trials. She is such a brave and strong little girl, at times stronger than her parents. If we can find the right medicines for her, she will meet her feeding goals and be able to come home. This is our greatest challenge at this time.  Please let this be the object of your prayers for our family this week. Please pray for us too-we need the strength and peace that comes from the Spirit to be able to be there for her and to patiently wait for her to come home. We are so grateful for the love and support we feel from so many loving friends and family members who are so willing to do so much for us.

This Thanksgiving, we are grateful for all of you, for our precious baby girl, for the little miracles we see every day, and for the Gospel and the hope it brings. Everleigh will get better, we will make it through this, and with God, all things are possible. Happy Holidays to you and your families, we

"Our Beautiful Girl, From Heaven's Meadow"

Hey all, Nate here!  Steph will have week 4's update out this weekend.  In the mean time, I've somehow managed to get all caught up in school (3 exams, two homeworks, and a lab - remember this is Grad School, Yay me!) and wanted to post a quick little something.

Smile Bug!

I have been getting a few questions about the origin or meaning of Evey's name.  To be honest we just picked it and never cared if it meant "One who makes big stinky diapers," or the what.  Anyways, I went digging one night and found the roots and meaning of Everleigh:

Everleigh is Gaelic and Hebrew in origin.  "Leigh" is the Gaelic word for "meadow" and when combined as it is coming at the end of the word carries a meaning of "from."  So directly, Everleigh means: "From Ever's Meadow."

Now, let's find out about Ever.  From the Bible we discover that Ever was a righteous son of Shem (Melchizedek), his name in Hebrew means, "Beyond," or, "The Other Side." Note the capitalization.  So, roughly our Beansprout's name means, "One who comes from the meadow on The Other Side," or, "One who comes from the meadow Beyond."

However, seeing as this is a Hebrew name and used as it is in Gaelic, it translates most correctly as:

Everleigh = "From Heaven's Meadow."

That's our little one, but wait, did you know her middle name, Yvonne, means, "Beautiful Girl?"  forgive me a little trickery, but Everleigh Yvonne Knighton translates as:

"Our Beautiful Girl, From Heaven's Meadow."

Smiling underneath her pacifier :)

3 Weeks and Counting!

Two weeks have flown by, and miracles never cease. Our baby is getting so big! She looks so different than she did in her newborn photos. Her little features are becoming more prominent, and Everleigh is now 19 1/2 in. long and weighs 7lbs. 7oz. She is beginning to plump up and will soon be out of newborn diapers and clothes. I guess future little sisters will have lots of nice, never worn newborn outfits to wear.  Some lucky parent will also be blessed to inherit a couple boxes of diapers if she continues to grow so quickly. It has also been fun to see her little personality develop.  She is a sweet and spunky little baby! She definitely has an opinion about things and will be sure to let you know all about it.  Just the other day, her Occupational Therapist came by to visit her. Everleigh was sleeping, so the therapist began trying a couple of tricks to gently wake her for her afternoon appointment. The therapist leaned over to whisper Evey's name and blow on her face, when Evey woke up with a start and shouted an angry coo into the therapist's face as if to say, "I'm still tired, come back later!" The therapist was so startled she jumped back and bumped her head on the monitor above Evey's bed. I tried not to laugh, but couldn't resist. Thankfully her therapist laughed too. Evey has so much spirit and determination!

 Evey has progressed by leaps and bounds in the past two weeks. She is truly a special little girl, and we are so blessed to have her in our family. Thank you so much for your prayers and fasting, they have been essential!  Here is a summary of her progress thus far.

Baby's first bath

Loving the scrubbing!

The tail-end of a smile

She really loves her Daddy!

So tiny!

Everleigh's Accomplishments:

Everleigh is officially off oxygen support! She can eat, sleep, and even endure seizures without the need for extra oxygen. Hooray for meeting one of her goals for going home! Thank you again for prayers and faith. She is grateful to be attached to one less tube.

One of Evey's biggest challenges has been learning to eat on her own. Originally, we were informed that this could take her up a year and that she may need a surgically implanted tube in her abdomen to assist her.  This was an absolutely terrifying idea to Nate and I. She has already been through so much, we didn't want her to have to endure anymore painful procedures. Plus, who doesn't want their child to taste birthday cake and Mac n' cheese, or even try new foods and discover things they don't like? Nate and I, as well as so many who care for Everleigh, fasted and prayed that she would be able to learn to eat. The challenge for Evey is learning to coordinate sucking, swallowing, and breathing in a pattern that allows her to drink without choking and sending fluid into her lungs. This is something that comes more naturally to other babies, but for Evey it requires work and concentration. Her occupational therapist believed in her and has been an Angel and an answer to prayers.  Evey has now been taking her meals by bottle for a week and has shown an incredible eagerness to eat!! Her Occupational Therapist has shown us special techniques for introducing the bottle to Evey that help her stay calm while she eats and prevent choking. Evey still takes about half of her feelings through a small feeding tube in her nose (it is a temporary tube that does not bother her), and her goal is to take all of her food by bottle. She just needs to keep practicing-she tires out toward the end of the feeding and often doesn't finish her milk. We have every confidence she will get the hang of it, and her feelings do seem to get a little easier for her each time. What a Champ! Everleigh has shown us she is limitless and can do anything she sets her mind to. That's our girl :D

Everleigh has also made strides in other parts of her development. Nate and I have been watching her movements for signs of weakness or struggle, in hopes of identifying which parts of her body would need the most encouragement in developing strength and control. We noticed that she didn't seem to use her arms and legs nearly as much as other babies in the NICU, even compared to some of her micro-preemie neighbors. Nate and I decided to try playing little games with her that involved us stretching and flexing her arms and legs for her in hopes of encouraging her to develop some muscular strength. She loves these little games and the results have been miraculous. In just days she is already much stronger and we see so much more coordinated movement in her limbs than before. Evey has begun using her arms and legs to unswaddle herself. She loves looking around to identify sounds and to look at things around the room. In the process, she has started to learn how to roll over. She can make it to her side, and then gets stuck. That is a skill that does not usually present itself until 3-6 months in an average baby! It requires coordination and strength. It also make diaper changes interesting. Evey has also learned how to use her arms and legs to kick with happiness, to grasp her blanket, do the "Mighty Cougars" cheer, and to play cute little games with Daddy. I tend to just put her to sleep. We are so proud of her.

Cognitively, Everleigh is progressing beautifully.  The goals for age 0-3 months are limited. By 3 months of age, babies should be able to focus on objects and track objects with their eyes, recognize their parents, respond to noises and look in their direction, smile, and should make and maintain eye contact. Everleigh has thus far accomplished all of these goals! Her goals for now are to continue practicing these new skills.  While she has done them all, her medications make her drowsy and at times a bit spacey. She s not always able to stay focused for long periods of time. As the doctors have adjusted her medications and her alertness has increased, she has been better able to work on her developmental milestones. After all, she still has plenty of time to practice.  She will amaze us.

 Everleigh's Challenges:

Evey's challenges the past two weeks have centered around her seizures and tremors. Evey is neurologically sensitive to every form of stimulus. She reacts to harsh lighting, loud and sharp noises, the taste of milk and "sweeties" (sugar water squirts used to distract a fussy baby), and anything that touches her. She loves music, singing, reading, and the sound of her parents voices, but hates the sound of equipment alarms and the cries of her neighbors. She scrunches her face and makes an angry coo of sorts as if to say, "Can you be quiet? I'm trying to sleep!" She loves to eat and is occasionally spoiled by her nurses with a few squirts of sweeties on her pacifier when she isn't feeling well. She enjoys being swaddled tightly and likes the feel of clothes, but does not like to be rubbed or stroked. She does enjoy the gentle but firm pressure from being held and snuggled. She also has to have a system of curtains drawn tightly around her crib to keep the lighting dim, or she will fuss and close her eyes.  This sensitivity is manifested as tremors-her body movements are jerky and uncontrolled. While her sensitivity has decreased significantly over the past 2 weeks, her tremors are still concerning to her doctors. On Wednesday, Evey underwent an MRI to check on the status of her brain injury. The results showed that her brain was unchanged from the way it appeared on her previous MRI, performed the first week of her life. This was very exciting news, as it meant no further damage was being done and the cooling has effectively prevented any further injury. However, the damage is so mild that it does not entirely explain why she is still so tremulous. This, combined with the recurrence and increasing frequency of her seizures, is forcing the doctors to look into other explanations for her neurological issues. They have ordered blood work to search for specific viruses and genetic disorders that could be causing the problems. We will have the results next week and hope for good news. The sooner we can identify the problem, the sooner we can treat it. The tremors and seizures exhaust Evey's body and severely impact her ability to complete her bottle feelings.  They also limit her ability to interact with Nate and I, and limit her Ability to have visitors in the hospital. It has been truly painful to watch her suffer from these issues. While her episodes are not painful, they do terrify her and the only consolation she will accept is being snuggled and allowed to fall asleep in our arms.

We have been asked many times by loving family and friends what we stand in need of at this time. What we continue to need are prayers for our family.Please pray for Evey, that her doctors will be able to control her seizures and tremors, that she can enjoy deep and peaceful rest, and that she can learn to take all of her feelings from a bottle. Pray that Nate and I can continue to be strong for her and for each other. Pray that Nate will continue to handle the pressures of school successfully and do well in his classes. We have been told just today that Evey may need to have a spinal tap, though it has been my sincere and ardent prayer that she will be able to avoid having this procedure. However, if the doctors cannot control her seizures, they will need to perform a spinal tap to make sure they are not overlooking potential medical issues. I have cried and pray constantly that she can avoid any further invasive procedures. Please let this also be in your prayers. We live you all and are so grateful for your love and support. We are dependent upon it and could not make it through each day without you.

To end on a lighter note, I have compiled a list of Everleigh's many nick names. When Evey was just a 12 week old fetus, her ultrasound showed her jumping around and showing off for Mom and Dad. It was quite the amazing sight! We coined her "Jumping Bean" at the time. What resulted is a large string of fun nick names!

-Evey
-Evey-Bean
-Everbean (Grandma Collingwood's favorite)
-Bean Sprout
-Beanie Bops
-Beanie
-Beanie Baby
-Miss Beans (After the character in Rango who also has "special" episodes. It's a defense mechanism, right? Lots of babies have it....)
-ForEverleigh (Grandma Knighton's favorite)
-Heavenly Everleigh or Heavenly (Papa Bullock's Favorite)
-Baby Child
-Peanut
-"The Kid" (thats the way her research doctor refers to her)

All so cute and so fitting of a precious little girl!

Thanks for reading up on our Adventures. We love you all and hope you are having a wonderful holiday season.

Baby Everleigh Is a Week Old!

Baby Everleigh is a week old! Well, actually, about a week and a half.  This was probably her hardest week, filled with lots of tests, discomfort, and uncertainty. I know Nate and I are going gray before our time. But she has been such a trooper! I am amazed at her beauty, courage, and joy throughout everything she has already experienced. Thank you again for all of the prayers, love, and service that have been sent our way-we are eternally grateful.

Noming the Binky

Everleigh already has so many people who love and care for her, the vast majority of whom she has never met. Nate and I hope that by sharing her story and progress on this blog, we can keep all of those who care for her up to date on her condition. If you have texted, called, emailed, or Facebooked either Nate or myself and have not heard back, please know we love you, appreciate you, and are not ignoring you. We are just busy and trying to catch up on all we have to do, but will get back to you eventually :)

We have been consistently asked a few questions, which we are happy to answer. *Warning: this blog post will be long, and perhaps technical. Pull up a chair and snack if you wish to read the whole thing.*

A) What exactly happened to cause her injuries? What does it mean for her future?
B) How is Everleigh doing? Do you know when she will be able to come home?
C) What was the inspiration behind her name?
D) How is your (Stephanie) physical recovery going? How are you and Nate holding up emotionally?

A) What exactly happened to cause her injuries? What does it mean for her future?

Everleigh suffered a traumatic brain injury called an hypoxic-ischemic episode, or a period of asphyxiation which resulted in her brain being deprived of oxygen and subsequently resulted in permanent brain damage.  The doctors have approximated the time of injury to be between 24-48 hours before birth, but don't know this with certainty. Essentially, the timing and cause of the oxygen deprivation won't ever be really known, all they can do is give an educated guess. The doctors based the 24-48 hour time window on her seizures, which started about 4 hours after she was born. Seizures following brain trauma usually take about 24-48 hours to manifest. The day or two prior to Evey's birth, I was exhausted and spent most off my time on the couch or in bed, waiting for her to come. Nate and I can't think of any external traumatic events that could have caused her injury. We did, however, go to the hospital the day before she was born for a routine Non-Stress-Test because we noticed her movements had become weak and infrequent. The test did not show that anything was wrong, so we went home and dismissed it as a resting baby in utero. So what do the doctors believe could have caused the problem? Shortly after Everleigh was born, her pediatrician took a sample of her cord blood gases, which came back with high levels of acid. This indicated that the placenta may not have been functioning correctly.  This would not be as surprising if Everleigh was overdue, as placentas do run the risk of decaying and dying after 40 weeks. But she was born a week early, so it's not an entirely trustworthy conclusion. We will know more when the pathology report of the placenta comes back.

What parts of her brain were injured and how is it being treated? As soon as the seizures started, the doctors started cooling her, or using a special water filled infant bed to lower her internal body temperature to 33.7 degrees Celsius, or about 90 degrees Fahrenheit. This essentially left her in a state of hibernation for about 72 hours, slowing down all of her metabolic functions, allowing her organs to recover from the shock of birth, and preventing the progression of further brain damage. We also voluntarily enrolled her in a medical study involving the medication Darbe, which is supposed to accentuate the healing affects of cooling. After she was warmed up again, Evey went to Primary Children's Hospital for an MRI to evaluate the damage. We just met with her team of doctors yesterday, who explained the results of the MRI. The areas of damage include both her left and right frontal lobes, though the the areas of injury are not in the deep brain matter (which I have been told is a huge blessing). This means that she will struggle to develop gross motor skills, such as walking, climbing, and eating on her own. Cognitively, her injuries should not have a large impact on her development. Our doctors are, however, cautiously optimistic about Evey's recovery. Her injuries are not as severe as they originally feared, and her current progress has been nothing short of miraculous. They attribute this to the fact that the parts of her brain that were damaged can be compensated for by other parts of the brain, and that children have the biological ability to grow and heal in ways that adults cannot. Their brains and bodies are still very plastic, or susceptible to growth and change based on environmental intervention. She is at a risk for developing Cerebal Palsy, but it won't be know for a couple years if she will be developmentally delayed or actually be presenting with Cerebral Palsy. What has been emphasized to us is that none of these predictions are set-she may amaze us with her recovery in spite of her injuries. It is all dependent on Everleigh and how she responds to early interventions such as occupational therapy, involved parents, and a whole lot of patience.

Sleepy Smiles

Precious girl

Snuggling!

Opening her eyes for the first time!

Smiles for Mommy & Daddy

Mommy holding Everleigh for the first time

Daddy holding Everleigh for the first time

All I know is that in light of all this medical terminology, beeping alarms, and forests of cords Nate and I have seen miracles happen and been promised even more. Everleigh has full use and decent control of her arms, legs, and head. She can grab our fingers, smile, coo, and push away a nurse who her trying to take her temperature. Her kidneys and bowels are up and running. Directly following the cooling, she was able to come off the ventilator and now only needs a little supplemental oxygen to assist her breathing. She has been taking a binky and has started to learn how to root around my chest for food. Everleigh has also been given distinct priesthood blessings which have stated that during her time on Earth, she will have the opportunity to be married in the temple and have a family of her own. Most of all, I know that when Nate and I hold her and spend time with her, we are filled with an undeniable peace and comfort-things will be tough for her, but she is going to get better. These are the miracles your prayers, fasting, and acts of service have provided for us. Our faith has grown so much in a short time. Please continue to pray for our family, and I promise you will continue to see miracles happen.


B) How is Everleigh doing? Do you know when she will be able to come home?

Everleigh is making progress every day. She continues to amaze us and her doctors. Today her big triumphs are a huge bowel movement and having all of her IVs removed. She is learning to take her seizure meds by mouth and now no longer needs an umbilical line to receive her food. We continue to fervently pray that she will learn how to swallow without choking, in hopes that she will not have to come home with a feeding tube. Please let this as well as other aspects of her recovery be the object of your prayers. Unfortunately, we don't have an idea of when she will be coming home. The original prediction of 2 weeks was wishful thinking- she can't come home until she can be safely and consistently fed as well as weaned off her supplemental oxygen. The most we can do is take this in 2 week increments; hopefully she will be home no later than Thanksgiving. All I can say is that my Holiday wishes for this year have changed: all I want for Christmas this year is to have my little family together, home and safe.

C) What was the inspiration behind her name?

Everleigh Yvonne Knighton. Nate and I have 2 very common names, so we went looking for something different. We found Everleigh spelled a few different ways on a name website, and both fell in love with it. For me, it reminds me of something eternal, something everlasting, and yet something elegant. It fits our beautiful baby. Papa Bullock has nicknamed her "Heavenly Everleigh", and she certainly is.  Yvonne was Nate's Grandmother's name (Yvonne Marian Ballif Knighton) who passed away this year.  They were very close, and Nate has told me he has felt her presence attending Everleigh at her bedside as we have visited her. She was a wonderful woman and we want Everleigh to remember her strength and faith by bearing her name. Knighton: well, she is one. Looks just like Nate too.

D) How is your (Stephanie) physical recovery going? How are you and Nate holding up emotionally?

Physically, I am doing great. My body is healing nicely and I even touched my toes and tied my shoes this morning. Any complaints I have had about the healing process are normal, for which I am very blessed. Hopefully this means I will quickly regain the energy I need to keep up with our crazy lives!

Emotionally, Nate and I are both wiped out. Another miracle in the midst of all this has been understanding professors: Nate was given a week off and the opportunity to take his exams at a later date. We have to return to life this coming week though. Our time has spent sleeping and visiting Everleigh at the hospital. We both want her to come home, but are trying to be patient. We want her to be healthy first, that is most important. Nate and I definitely have moments of strength and moments of sorrow-but we take turns being strong and sad. It has been easier to deal with the uncertainty of her hospital stay by appreciating her everyday victories instead of focusing on dates and numbers.  Speaking of dates, Friday night we decided to get out and have a date. We went to Aristos, a scrumptious Greek Restaurant, and were on our way to a movie when we decided to go see Evey for a late night visit. Apparently she is quite the night owl! She was so active ad happy to see us, our hearts just melted for her.  We are still working on getting to that movie.

Our families have been a huge blessing and support. My Mom was able to come out to stay with us this week, which has been wonderful. She has been so comforting and helpful, as well as showing me some tricks to help my body heal faster. It's sad to think she will be going home Monday. Nate's family has also been so helpful with running errands, assisting with blessings, and being available for anything we need. I know Nate especially needed the support and comfort of his family during this challenge. 

Moving here was a hard transition for me, but I can't imagine doing this any other way. We have been so continually blessed and find more to be grateful for everyday. Thanks for reading up on our adventures. Until next time, Come what may, and love it.

Baby Everleigh Has Arrived- Our Biggest Adventure Yet

This year Nate and I embarked on our biggest adventure yet. In February we found out we were expecting our first baby, due October 25, 2012. We were terrified and ecstatic! Two kids who never grew up having a little one of their own. 

 I have been so blessed to enjoy an easy pregnancy.  I never experienced any morning sickness or weird cravings, though I did discover a weird aversion to chorizo (Mexican spiced sausage). Aside from being extra tired, the only symptom I had of being pregnant was a growing belly. At 18 weeks we found out we were having a girl! Nate and I were so excited. He went online and picked out various pieces of BYU fan gear for her to wear when she arrived. I started sewing a baby quilt. At 36 weeks the baby started showing signs of being ready to arrive-she was super active, putting on weight quickly, and had already dropped! This was very exciting to me, I was ready to have this baby in my arms instead of my belly. Unfortunately this also left me very impatient, and the 3 weeks that followed seemed to drag by.

Thursday morning around 2:00am I woke up having strong contractions. By 3:00am I woke up Nate and we left for the hospital. After being admitted, our Labor and delivery nurse performed a routine Non-Stress Test, which showed the baby was doing great and the contractions were coming fast.    Around 5:30am, the baby's heart rate began dropping with the contractions and quickly recovering. Our doctor recommended manually breaking the water to speed up the labor and to make it easier on the baby. After my water broke, the doctor informed us that the amniotic fluid was tinged green (indicating she had pooped in utero), confirming she was experiencing some distress. We were warned that she may aspirate some fluid during delivery, so they were going to bring in an extra team to assist her breathing, just in case. I received the epidural, and she began to resume a normal heart rate. Thursday, October 18 at 9:47am, she was born via a vacuum assisted delivery. We named our precious baby girl Everleigh (pronounced ever-Lee) Yvonne Knighton.  She weighed 7lbs exactly and measured 18 inches long. 

Unfortunately, she was not breathing when she was born. I only saw a purplish-blue body whisk past me as they took her to a team of specialists to get her breathing. Nate and I were both frightened and upset- we had pictured this moment as the baby being placed on my stomach and Nate cutting the cord. About 5-6 minutes later, a weak squeal came from the infant prep table and the team of doctors wheeled her out of our room. Our OBGYN informed me she would be going to the NICU for a little more breathing assistance and suction.

30 Minutes old; This picture was brought to my recovery room by a NICU nurse before I got a chance to meet Everleigh for the first time

An hour later Nate and I were escorted to the NICU to meet our baby. She was so beautiful and peacefully resting, it was hard to believe there was anything wrong with her. We were not permitted to hold her, but were able to give her little kisses and hold her hands. Everleigh's primary pediatrician (she has a whole team of them) explained that she had aspirated a lot of fluid and meconium, which had impacted her breathing and left her oxygen deprived at some point in the delivery. They wanted to keep her for 48 hours, or until she could breathe on her own.  This did not seem as scary to Nate and I-we would be in the hospital for 48 hours anyway for recovery, at least we could still go home as a family. I was taken to a recovery room shortly after to get cleaned up and rested. Around noon Nate and I returned to the NICU to visit Everleigh and find out more about her condition. When we arrived, we were approached by her pediatrician again, this time to inform us that she had begun having seizures in the past hour.  While it couldn't be confirmed without further testing, he believed this was a manifestation of some brain trauma that occurred due to oxygen deprivation and that she 
would need at least a 2 week stay to determine the damage and get her body back to a functional state.  Nate and I were so, so devastated. In the past few hours she was suddenly covered in wires and tubes and placed under sedation to prevent further seizures. We couldn't approach her bassinet 
because she was still being cared for by a horde of busy specialists. Nate and I both sobbed our way back to the recovery room, and for several hours after until we ran out of tears to cry.  Nate and His father gave Everleigh a priesthood blessing, in which she was told she would be blessed to recover and would lead a happy, healthy life.  We called our bishop, who came to the hospital and also gave Everleigh a blessing that spoke of the many wonderful things she would accomplish in this life as a happy, healthy young woman. A note about priesthood blessings-as members of the Church of Jesus Christ of Latter Day Saints (LDS) or the Mormon church, we believe these blessings are given with revelation from God through those who hold the Preisthood, or authority given from God. In other words, we believe these special blessings are directly from God, and if we have faith, we can know that the things that are said are true. Nate and I have found great comfort in these blessings. During 
the course of my pregnancy, I had also received many blessings promising a happy, healthy baby.  After much thought and prayer and with the promises of the blessings, we have concluded  a few things that have brought us great comfort and make leaving our baby each day bearable.

4 hours old & on the cooling pad

Poor muffin :(

I really loved that Halloween bow!

-We were blessed to have our baby in one of the top hospitals in the nation. If she would have been 
born anywhere else, she may have died in the delivery room. We are so blessed to have been surrounded by competent and inspired doctors who saved her life and know how to treat her medical complications. We are blessed that this hospital has a NICU and is connected to one of the best children's hospitals in the nation: Primary Children's Hospital. She did not have to be transferred or whisked far away to receive the very best care. We are also very blessed to only live 5 minutes away from this hospital, so we can spend as much time with her as possible.

-Everything happens for a reason.  In John 9:1-3, Jesus heals a blind man. His disciples ask who has 
sinned, the blind man or his parents, to deserve his affliction. Jesus replies that no one had sinned to bring this affliction upon him, but that sometimes Heavenly Father uses these trials to show forth great miracles.  It has been so tempting to ask why this would happen to our family, or why we are being punished.  But sweet Everleigh has already shown us the power of faith and we have witnessed miracles in just the short time she has been on earth. We love her so much and are so grateful to have her as a member of our family. And you know what? She is absolutely perfect. A piece heaven, an Angel sent to dwell among us. She fills us with so much hope and joy every time we are with her. We wouldn't change a thing, except perhaps to bring her home. 

We have been overwhelmed with prayers, well wishes, and offers to fast, sometimes from complete 
strangers. We have found sweet cards taped to our door and meals brought to us each night since I was released from the hospital. Many of the tears we have shed have been those of gratitude for the love and prayers of others. Those prayers and hours spent fasting or in service have worked miracles in her life already. Please continue in those prayers and acts of service-they have been our strength and her medicine. Thank you for the many inspiring stories of other NICU babies who have gone on to lead happy lives. They give us courage. We love you all and will keep you posted on her progress. Thanks for reading.

Adventures always have ups and downs, but the journey is the reward, right?  :)

A Year in Review.....2012

Wow! Almost a year has passed since I updated our blog. And what a difference one year can make! Here are the big adventures the past year has held for the Knighton family:

-Nate was accepted to the Biomedical Engineering Graduate Program at the University of Utah.  We moved up to Salt Lake City in August to pursue this dream. He absolutely loves it! He comes home everyday super excited about what he is learning and craving more. Nate has talked about going back to school since we first began dating, and it has been so neat to see him reach that goal. Student life has come with its blessings and challenges.  While we don't have much money, we live in an area where there is so much to do and enjoy. We have enjoyed the accessability of good hospitals, stores, and beautiful scenery. We do, however, miss our dear friends and family in Ridgecrest, as well as the small town feel. We will back in Ridgecrest Summer 2013 to complete an internship with the Naval Base, and be back in Salt Lake in August.

-Nate's dear Grandmother, Yvonne Marion Baliff Knighton, passed away in May. She was an amazing woman who Nate dearly loved. We were blessed to be able to attend her funeral service and celebrate her life with family.  She has 8 beautiful children and more grandchildren and great grandchildren than I can recall. Grandma Knighton loved the gospel of Jesus Christ and made sure her family knew it and loved it as well. She also enjoyed a fierce game of Skip-Bo! No one could win against her (though her strategies were rumored to be.....ruthless). We miss her dearly and think of her often.

Grandma Knighton doing her favorite thing, playing SkipBo with the family

She was ruthless when it came to SkipBo....

-My childhood pet, Benjamin Franklin Bullock-Collingwood-Knighton, a Black Lab/German Shepherd mix dog, passed away at the age of 10. He had battled severe arthritis, periodontis, and a rare metabolic virus that seemed to age him by several years in a matter of months. He died peacefully just this past week. He was truly the best dog in the world, and is sorely missed.

Benjamin Franklin Bullock-Collingwood-Knighton, the best dog in the world

 -We found out we were expecting our first baby, due to arrive just after our 2nd Anniversary. Pregnancy and all it entails has brought innumerable adventures, laughter, and challenges that  we have cherished. There is so much to say about our sweet little girl that a few sentences could hardly express. Her story will follow in future posts, so keep reading up and we will keep you posted.

Maternity Photos! We were so excited for her to come!

We loved you the moment we knew you were coming <3

Strangely prophetic and yet, perfect :)

Nate and I can never pass up the opportunity for an awkward family photo

Well, there is the shorthand version of our recent adventures! I could fill many pages of blog posts with the details, but its best to just start at the present when the details of our adventures are fresh. Thank you so much for keeping up with the Knightons! I'd write more, but adventures await and we just put on our rain boots........   :)