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.