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.
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| 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
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