Catching Up

Primary Children’s is the great equalizer. It is a place where perspective is not only gained…it is forced into the minds of those who happen to find that their trials and challenges have led them there. It is very easy at times to feel sorry for one’s self. It is very easy to look around you and be jealous of those who find themselves on perceptually greener grass. Not at Primary’s. This place will humble even the most scarred hearts and minds. Just when you think your situation is beyond your ability to endure, you look to your right or to your left…and you see other parents just as in love with their children as you are…looking as beat down and broken as you feel. You learn very quickly that you MUST, when taking inventory of your life, count the “haves” and never the “have nots”. You realize that, though your challenges are not small and the road ahead is riddled with trials, there is always someone else traveling a far more difficult path…one that may not end with them taking their child home to enjoy a productive and joyful life. Their path may start and end in that hospital…and these parents are heroes for being willing to walk with and even carry their little ones every step of the way…even if it’s only a few terribly short steps.

We are so blessed. Our little Lily is home. She is doing very well. Will she ever walk? We hope so but are prepared to walk for her if needs be. It’s amazing how long you wait to see a face you’ve been imagining forever...wondering what she looks like. Then, when you see her for the first time…you realize…it was ALWAYS her…a baby girl with a face you always knew. Of course it’s you Lily…it was always you. We aren’t seeing her or feeling her for the first time…we’ve been here before…and it’s more a wonderful reunion than a first time introduction. She is and always was going to be ours.

I have to admit…there is nothing special or unique about me as a father…at least not yet. But I am working on becoming worthy of this little gift. The line between her belonging to me…and me belonging to her is extremely cloudy…as it is with each of my kids. They teach me more than I could ever hope to teach them…this fact forever changing my perspective about God’s plan for families. We do not save our kids…our kids save us. Though I always knew the type of woman my wife is…I am in awe of McKenzie every day…at how absolutely perfect she is as a wife and mother. In my opinion, every other kid alive should be jealous of my children…who will live their lives under the wings of such an incredible woman. I will forever try to deserve being her husband. What an honor to walk this life beside her. God is very clear about how important His sweet daughters are to Him…and my wife helps me understand why our Father in Heaven is so protective of her. She exemplifies charity, love, and kindness…attributes God’s mortal sons sometimes fail to embrace…but should always strive to emulate through the examples of these strong and powerful women who adopt their true nature and become examples of goodness and light.

We are fighting the fight. Together, we are doing for her what every parent would do for their child. We will love her and cherish her and provide her every opportunity possible. She, like Wyatt and Skylar, is a piece of our lives. We are not and would never be complete as a family without her.

To catch you up.

We only had Lily home for a few days after she was born before we were back in for emergency surgery. We were desperately hoping that Lily would be one of the few kids with SB who wouldn’t require a shunt to address issues with hydrocephalus (fluid on the brain). Sadly, we weren’t that lucky. Shortly after coming home, we began to notice that here head was swelling and her fontanels were feeling increasingly full. The surgery was scheduled to take place at Primary Children’s Hospital early the following morning. Needless to say…it was a sleepless night for both Kenz and myself.

We arrived at Primary’s and were immediately taken to CT. Our Neurosurgeon was hopeful that Lily’s anatomy would allow for the performance of a relatively new but effective procedure known as an Endoscopic Third Ventriculostomy or ETV. In simple terms, this procedure would allow a hole to be opened up inside the brain, which would provide an alternative route through which cerebral spinal fluid could flow effectively. The advantages are clear…no foreign object in the body…decreased chances for infection…no “equipment” in the brain that could fail…fewer incisions…lower long term complication rate when compared to a shunt. It seemed like a great option for Lily…and we were optimistic about the chances of qualifying. However, it was not to be. Sadly, the potential risks outweighed the possible benefits due to the fact that little Lily’s anatomy would not accommodate the tools needed to perform the surgery. It was just too risky…and the doctor felt that attempting an ETV could seriously harm or even take Lily’s life due to the close proximity of the incision area to major parts and vessels of the brain. In a nutshell…there wasn’t enough room to work without risking her life. The correct and ONLY reasonable decision was made…and a shunt was placed in Lily’s head, which would allow the CSF to drain from her head into her peritoneal cavity where it could be reabsorbed. It was a VERY hard day. Handing her to the nurse just before surgery was like giving a fragile piece of our hearts to a stranger with a smile. There was no way she knew who she held in her arms or what she meant to us. We made them promise to be gentle with her…and to do for her as they would their own children were they charged with their care. It was an incredibly emotional time. I felt so blessed in that moment for a few very obvious things. First, my sweet wife…who could not be with me for Lily’s first surgery because of her own challenging recovery. Being together for this second surgery made a difficult situation…not only bearable…but a blessing as we felt the binding forces of adversity pull us even closer together and further solidify our union. Second, the AMAZING doctors, PA’s, NP’s, nurses, and techs who took care of our little angel. Without them, our baby’s challenged and broken little body would have been uninhabitable for her soul…and we would have lost her multiple times over. Third, the incredible facility that is Primary Children’s…where parents like us can retreat to when we feel overrun and on the verge of defeat brought on by the complications our children face.

I have to take this time to also thank dear friends. I had to take time off work so that I could be with Lily at the hospital. Some of my dearest buddies, Derek and Norm, took my place at work and ensured our duties as paramedics to care for our clients were fulfilled in every way. As if that wasn’t enough…while Kenz and I were waiting in the cafeteria for Lily to get out of surgery, I suddenly felt a hand on my shoulder. I looked up…and there was my dear friend and co-worker Thomas standing above me. I broke down and hugged him. I couldn’t even talk. He didn’t tell me he was coming, he didn’t even know if he could find us…but he came anyway. It touched our hearts more than he could ever know and I am eternally grateful for friends like Thomas, Derek, and Norm. It could have been any number of people that day…as so many have helped us and supported us when we needed them most. I apologize I can’t name them all in this post…but as updates continue…I will do my best to give credit where it is so fully due. Thomas, Derek, and Norm represented all of our friends in that moment. Thomas could only stay for a few minutes…but those few minutes influenced us so much that day…and changed the mood for the better. God bless all my friends who have supported us in any way. We feel your collective strength...and the load had been made lighter…and at times…hardly a noticeable burden at all. Thank you for carrying us Thomas, Derek, Norm…and the rest of you. 

Lily came out of surgery with her new shunt in place, and in every respect…it was a great success. Our prayers that the medical providers attending to her would be blessed to perform their duties beyond their normal capacity and potential were answered. Lily was left to recover with mom and dad by her side all along the way. Kenz only had to endure one uncomfortable and sleepless night lying on a “chair-bed” next to Lily while I had the luxury of sleeping at home with our other two kids. To our surprise and much to the surprise of the medical staff, Lily was released to our care and came home after only one night in the hospital. It was wonderful. Since the surgery, Lily’s shunt has held up strong and hydrocephalus has not been an issue. The scars on her head, behind her ear, and to the right of her naval have healed magnificently well. Infection associated with the shunt itself and the incision sites is always a concern, but it becomes less and less likely as time goes on. To date, there have been absolutely no problems or complications associated with the shunt placement. Time will tell if we can continue to brag of its success. We hope she enjoys a long and healthy life where her shunt remains in its proper place…as a cool conversation piece when showing off for friends.

June 30th, 2012...a hard day...

Well…first off…I’d like to start with an apology. As many of you know and understand…life has a funny way of getting the best of you and taking up so much of your time…that you lose the opportunity to keep your dearest family and friends updated with regard to all the happenings in your life. I am so deeply sorry that we have kept you in the dark with regard to our little Lily and these first few months of her amazing life. Kenz has been bugging me non-stop to update the blog, but I have been so busy with work…I have neglected the very people who have supported our family through thick and thin. The least we can do is keep you in the loop…so let me throw a huge lasso around you all and bring you back into the Allred family circle.

Let’s pick things up where I left off two months ago!!!

Early in the morning on June 30^th, I joined my dad and my brothers Jason, Jeremy, and Sam in the NICU at Primary’s. We had the opportunity to give little Lily a blessing before the neurosurgery team closed the open defect in her spine. For those reading this who are not of our faith, a blessing is when worthy male members of my faith holding authority from God, in this case a few good men in my family, gently laid our hands on my little girls head to bless her and pray over her. The peace that overcame me from this experience could not be exaggerated. I knew in my heart through the Spirit of a loving God…that though her body may never function flawlessly, it would be receptive to a successful surgery, heal well, and be sufficient to provide her a long, happy, and productive life…full of the realization of goals far beyond our expectations. She was going to be ok…

This peace did not dull the difficulty I experienced as a father however…allowing my little angel out of my hands and into the hands of the surgical team. It was perhaps one of the most difficult and emotional moments of my life. Kenz could not be with me, as she was recovering from her own surgery, which is why I was so appreciative to my dad…who stayed with me until we received news that the surgery was a huge success and that our tough little Lily had literally “sailed” through the complicated procedure. We cannot thank the neurosurgery team enough for their stellar work. Usually, with a defect as big as the one Lily was born with, additional cutting and possibly even some tissue grafting would have been expected. Miraculously, they were able to pull the lesion closed without any additional cutting.

Seeing her for the first time after the procedure was amazing! She was still intubated and on the ventilator. But her vitals remained stable and she was kept comfortable and was able to rest peacefully for a few days. During that time, there was no shortage of visitors. Family and friends on both sides came to see our special little girl for the first time. It was SO wonderful to see family and friends and we finally felt the nerves and anxiety fade away leaving room only for excitement and celebration. She was finally here…and it was not her body that made her special…she was special to begin with…and her beautifully different little body just added to the magic she already possessed. 

Primary Children’s Hospital is the most wonderful place on earth…that you never want to be. I thank God every day that there are men and women who dedicate their lives to the service of others. These doctors and nurses are living breathing angels with hearts so big and so focused on what is truly important…one cannot help but want to emulate their kindness and compassion every day. These people are the very best of the best.

Lily was allowed to come home after only 1 week in the NICU. It was a wonderful day! I remember being home...as Kenz was discharged before Lily…and going back and forth to Primary’s several times a day to see out little girl, feed her, and hold her. A week after she was born, Kenz and I were preparing to head back to the hospital after spending valuable and much needed time with our other kids at home…when the phone rang. Kenz answered…she looked puzzled…said “ok”…and hung up. She immediately looked at me and began crying. I was horrified!!! I thought something went horribly wrong and that we needed to rush back to the hospital…FYI ladies…when under the circumstances we were under…don’t cry right after you hang up on a call from the hospital your baby is in…it will take years off your husband’s life!!! But luckily, Kenz’ tears were tears of joy…I’ll never forget these words…with tears flowing freely…Kenz said, “that was the nurse…she said we should bring a car seat!” SHE WAS COMING HOME!!! We hugged and rushed out the door…several hours later…we were home…and our family was…for the first time…all under the same roof of the same home…the deepest desires of this father’s heart were realized…and all of the trivial things of the world didn’t matter any more…my family was together…forever. 

Lily Norine Allred is here...

The days, weeks, and months of waiting have come to a wonderfully eventful end. Throughout the pregnancy, joy and excitement have been countered by a sense of nervous anticipation of the unknown. Though we couldn't wait for Lily to arrive, there was a strange comfort found in the fact that we had many more tomorrows to prepare for her. Those tomorrows ran out rather suddenly on Friday June 29th.

Let me start by saying...I have been trying to keep up with my sweet wife's nesting instinct for the past few months. I have received honorary degrees in house painting, gardening, landscaping, construction etc...and am available if people are hiring. It's actually been a wonderful thing to work side by side with Kenz as we have prepared a safe and comfortable new space for Wyatt, Sky, and Lily to come home to. You'd think however...as we approached our scheduled delivery date (7/2/12) that Kenz would heed her husband's council with regard to preparing her hospital bag. You'd think so...but you'd be wrong. For some reason she always got distracted doing something else...and she paid for it.

To catch everyone up...we moved to the Sandy/Cottonwood Heights area of Salt Lake County in early May. It is the PERFECT location for us as we are now very close to Primary Children's Hospital and the other necessary facilities as well as very dear and helpful family. We have settled in well...and I am amazed at the ability Wyatt and Sky have displayed as they've adjusted to the new environment. They are my heroes!!! We've made the home ours...and have come to feel comfortable about the space Lily was to come home to.

About a week and a half before our scheduled delivery date (7/2/12)...we found that Lily had flipped and was now breach. Because of her condition...our OB determined it was the best idea to plan for a c-section and hope she flips before delivery. Kenz was bummed. She was scared...and did not want to have a longer down time than what she would normally have with a vaginal delivery...but as we have been reminded all too often...LIFE HAPPENS...and you simply have to adjust the sails.

Thursday night (6/28/12)...we spent the entire evening out doing yard work. I told Kenz she should rest...but if you know her...well...let's just say...we spent the entire evening out doing yard work. She felt great. The next morning, we drove up to Ogden early to help Kenzie's brother move their things into the U-haul for their move. Just as we were finishing up...Kenz came to me and said, "Corb, I think we need to go to the hospital," "Are you serious? Why?" "I'm bleeding a little." I immediately reverted to my training and advanced paramedic skills...and FREAKED OUT!!! Just kidding. I was calm as a summer's morning...I simply forgot how to think, speak, talk, drive, lost all bladder control, and developed a nervous twitch. I was fine. We called the OB, he told us to come right in...and we didn't argue. Anyway...good thing was...Kenz family was there. So I gave Kenz a blessing with her dad and brother, and we left the kids with Grandma...and headed for the hospital. It was a LONG drive. I'll forgo the minor details and say...she was ready to deliver. Despite the plan...Lily wasn't going to wait. Kenz sailed through the c-section. She didn't even require anaesthesia and did it standing. Just kidding...it was crazy. I assisted with some c-sections in paramedic school...but it's different when it's your sweetheart. We wanted it to be gentle...it wasn't...We wanted them to pull the baby out through her belly button so there wouldn't be a scar...they didn't. But they did an AMAZING job. Kenzie's stomach still looks sexy...she still has a six-pack...it's just missing...and they put in staples that match her belly button ring and my nipple rings. It's perfect. Ok...we don't have body piercings...but I've been sitting in a hospital for a few days and I'm slowly losing my mind. Anyway...Lily joined the world at 4:33pm on 6/29/12. She was so tiny and beautiful. 4lbs 11oz and 18.5in. Sadly...they took Lily for assessment before Kenz even got to see her. Kenz had to go to recovery and wait almost 3 hours before even getting to touch her. Let me just say...Lily is perfect in every way that matters!!! Seriously...just perfect and gorgeous and everything we could ever want in a little girl and more. I got to spend a lot of time alone with her during the first few hours of her life as she was already so strong...never needed oxygen...just calm...and content...and sweet as can be. Lily told me that I was her favorite and that she'll always be a daddy's girl...but Kenz doesn't believe me. I told her that it's because I was the first one she saw when she opened her eyes...so she thinks I'm her mom. Just kidding...but it was REALLY hard on Kenz. Kenz is the most nurturing and affectionate mother on the planet...and not being able to be with her baby is something no mother should ever have to endure.

A few hours after her birth...Lily was brought in to Kenzie's room...Kenz held her little hand for about 2 minutes...and they whisked her away to Primary Children's. I was able to go...but Kenz had to stay. It was awful for her.

Now...there were no surprises. She had a very large opening in her spine at around L3/L4. Very little leg movement or motor function below the hips. We are ever hopeful...but are resolved in the reality that she may never know what it is to walk. However, miracles can a do happen. I mean...she's here...and that's a miracle in and of itself.

She rested comfortably through the night after family came to visit. The corrective surgery was scheduled for the next morning. It was a long and anxious night. At about 2am...though Kenz felt HORRIBLE...she couldn't stand not seeing her little girl. So she braved the pain, nausea, and vomiting, and made me wheel her over to the NICU at Primary's...where she finally got to hold her (kind of) on her lap...as Lily laid on her tummy on a pillow. It was magic to get them together...and I stood in awe of my two girls...loving them both more than words can express...and idolizing them as the examples they both are to me.

I will write again soon about the surgery...and what's happened since. But I'm tired. All is well for now...and we love and appreciate you all for the support and caring. Keep the prayers and positive thoughts coming. They are working.

Blessings All Around

It has been a while since my last post. However, the reasons for such could not be more of a blessing to our family. Let me back up...

I want to start by again thanking those who have been helping us during this time of transition and trial. From the bottom of our hearts we thank you for truly making our burden light...to the point where at times...we cannot even sense it at all. Many have taken so much of the load off our shoulders...that the confidence and peace we feel now...far surpasses what we've ever felt at any point in our lives. I wish I could thank everyone personally, for your prayers, kindness, and selfless service and donations. One day...God willing...we will have the change to thank you face to face.

We have successfully moved our little family north...to be closer to much needed family and the necessary hospitals and facilities. However, before we moved, McKenzie's brother Sam and a few of our dearest friends in Cedar City, Derek and Rob, threw one of the most impressive and touching fair well fundraisers we could have ever imagined. As many know...we are BIG into climbing. So...what could be more appropriate than not one...but TWO surprise climbing competitions with all proceeds going to our little girl's future!!! It was INCREDIBLE!!! The turnout was overwhelming and the love and support our friends and family showed us was something we could never have imagined. It was a HUGE success, and the support shown and funds gathered will go far beyond any monetary value...they will be a page in the book of our little girl's life. She will know how much she was loved.

We packed up the house...and the day to load the truck came. It was bittersweet to say the least. We were leaving our first real home. We were leaving some of our dearest friends. We were leaving...to a future that was not as clear as we might have imagined a few months ago. But, we were ready and willing to tackle all challenges...and were shown so gently...that we would NEVER be alone...we had an army at our backs to help us along.

Speaking of armies...the morning we loaded the truck...an entire battalion came to help. We have come to learn that you cannot put limitations on the amount of kindness and charity good friends can show you. We had the truck completely loaded and the house completely empty in under 2 hours!!! I felt like I didn't even do anything!!! Buddies came from as far away as St. George just to move a few boxes!!! It was hard to leave...but I know with all my heart that our lives were graced at this time by the family and friends we have for a reason. I can't express it with words...so I won't try. Suffice it to say...we love you all...and could not be more thankful and indebted to you.

We moved into our new place that same day...and again were met with the help of dear family, old friends, and new ones. We were moved in in no time. We even had a frozen pizza and some lemon bars in the fridge (provided by our dear family friend and visiting teacher). The support and kindness continues.

I have been able to secure employment through the fall that we so desperately need...and pray for additional blessings to come. I know they will...as the prayers of so many are reaching heaven in our behalf.

We are settling in and finding ourselves more in love as a family than ever before. I am convinced that when trials come...you can either pull together...or pull away. We have been sealed in every way and that has given us strength. And though our little family can take a lot...whatever we cannot carry...is being supported by the family and friends surrounding us...and a loving Savior and Father in Heaven so acutely aware of us.

All is well...and if things go as planned...we should have a new little addition in early July...let's have a parade:)

Incredible Support...

Kenz and I cannot help but feel overwhelmed by the uninhibited goodness in people. We have seen first hand over the past few weeks the profound impact the sharing of time and talent can have on a family in need. We have seen our little girls fund raiser...which began as a simple but desperate petition for help void of any real expectation of success...bloom into a unified accomplishment of immeasurable proportion achieved by so many seen and unseen angels in our midst. Our goal, a lofty one, is in reach and becoming more of a reality each day as the story of our little girl reaches so many. We feel our lives, no matter how we have lived them, could never have been so full such that our reward could warrant such tender love and compassion. We know where much is given...much is required...and we have never felt so indebted to our God, our family, and our friends. The events of recent weeks have contributed to our resolved opinion that we will forever be playing "catch up" in our attempts to pay all of these things forward...but we will.

On March 20th, some very dear friends in Provo...Emily, Sarah, Rachel and friends...threw a charity concert in their home. The talent was incredible as we watched the performances via Skype. Emotions were very close to the surface as we saw familiar and unfamiliar faces join together for a common cause. Bands played...voices and instruments rang out...and perhaps it was just the intimacy of the occasion...or the kind and loving nature of those in attendance...but this concert could have taken place in the most formal and grand venue in the world...but it would not have been more powerful or special to us. It was amazing an amazing success in every way.

Just yesterday on April 14th, one of my best friends and mentors...Cory Mince...put on a charity .22 precision rifle tournament in Springville. He is one tough guy...Iraq War combat veteran, recipient of a combat purple heart...a warrior in every way and one of my heroes. But his heart is tender when it comes to his friends...and he put every bit of it into this event. Over 30 competitors braved the cool weather, the wind, and the rain...to join their brothers for a common cause. As I shot shoulder to shoulder with them...mostly strangers...I was so humbled by the fact that many traveled long distances to support my unborn daughter. It was an incredible success and I could not have been more impressed with these men. Friendships were forged from a common interest and strengthened in the common good...and I look forward to rubbing shoulders with them again...perhaps even outshooting one or two of them someday:) We may only have a few things in common...but if I can emulate even a fraction of their kindness and support for others in need...I will be a far more confident man when I meet my God again.

I can't thank everyone enough...and I can't possibly thank everyone who has helped us in as personal a way as I would like. But please...please know that we are doing wonderfully well because of each of you. We are nervous and anxious for her arrival...but it is excitement that we feel as we look forward to the day...excited to meet her, to care for her, to love her...and to tell her about you. The light at the end of the tunnel is nearly blinding in it's brightness and luster...and though the darkness comes...it ALWAYS goes and we are ever confident in our ability to rise to any challenge. We are not alone...so many of you have made that clear.

Words Of Encouragement...

Corbin and I can't believe it has been a whole month since our first ultrasound at 19 weeks when we found out that there might be something wrong, and 3 weeks since we found out that our little baby has Spina Bifida. For me it feels like its been so much longer than that. I guess that is because so much has happened in such a short period of time. Our "plan" to have a baby, move to Oregon, and for Corbin to start the PA program at OHSU have been put on hold...well at least 2 of the 3. Our little baby of course is still on her way, just not as we expected. We have had time to process a lot during the last 3 weeks. Going from shock to fear and now back to the excitement of having a baby girl.

My biggest fear now is not having a baby girl with Spina Bifida, but having a baby girl that will have to go through so much during the first few hours of her life. I'm trying to take things one step at a time and not think too far beyond that. Well, last night Corbin and I went to Primary Children's Hospital to the Spina Bifida Education night. We got the opportunity to hear from some incredible people. After the speakers, there was a Q&A portion where we learned so much from the questions that other parents who had kids of all different ages asked. When the workshop was finished we talked with several other parents. I can't tell you how encouraged and inspired I was. Although I didn't make it through the night without shedding a few tears, it was a different feeling to be surrounded by other mom's who knew exactly how I was feeling and what I was going through. When I expressed my fears about having our little girl only to have her immediately taken from me to go into surgery, I knew that there were others who had experienced this as well and survived it. One cute mom told me that it is the "worst part of the best day". I know that it will be the hardest thing I have ever done as a mother. But I was given the advice to focus not on the surgeries (as there will be many) but on the outcomes. Still I can't fathom how I will cope with recovering from a c-section when I want to comfort my small and helpless infant. How does anyone do it? They do it because it is the only thing they can do. Put all of our trust in the Dr.'s and nurses to take care of our babies. And now I have peace in my heart knowing that at least Corbin will be here in Utah, instead of Oregon. I know I will get through it because others have....and have lived to tell the tale. I made some great connections and learned so much. I have learned that we will be better for it because I see it in the parents I met. They are loving, compassionate, and strong people. I only hope I can live up to the task.

I haven't had a chance to blog yet so I apologize to those who were expecting a beautifully composed "Corbin Blog". Don't worry, he'll be back!

Kenz...

I thought my wife and I were close. After 7 years of marriage and two children with one on the way...I thought we were really tight and had things figured out. I knew I admired her more than anyone I've ever known...and that my time with her was more precious every day...but let me tell you that up until a few weeks ago...I hadn't even scratched the surface of my capacity for loving her.

It has been an honor to be by her side through all of this. Her strength rubs off on me...and I find that the more I'm around her...the more I like myself. She lifts me up...and reassures me in every way. Though outward appearances might lend themselves to the perception that I am the strong one of the pair...let me be perfectly clear...her quiet and tender disposition compliment her stalwart and courageous spirit. She represents all that is good and wonderful in this world...and as I have the privilege of watching her every day...I am in awe. I can never be worthy of such a companion...but I will spend my life trying to earn her regardless of the fact that every moment I'm with her...I fall deeper and deeper in debt. She is so much better than me...and our future challenges will be met with the incredible resolve of a wonderful wife and mother...the most wonderful.

I suppose only men who truly adore their wives and love them in a way no words can describe can really understand what I mean here. I just want everyone to know how I feel about my sweetheart...so that everyone can see the team that we are...and will forever be.

A big thank you to everyone who is helping us...just wanted you to know that we're up to the challenge...

Just hoping I can keep up with her...

Too Happy to be Sad...

We can't help but be overwhelmed by the outpouring of support from family and friends. Ever since we received the news, many have come to our rescue desperately wanting to help in some way. That's when some of our loved ones suggested we start a charity donation fund in our little girls behalf. Because of our pride...and the excuse of not wanting to "burden people" we were hesitant to open up our lives and our need to everyone we knew. We had always been so sufficient, so capable. For the most part, we had always found ourselves on the other side of things. But now...without work...beginning graduate school with the hopes that loans see us through...we found ourselves falling short in many ways. Realizing, through the gentle persuasion of those closest to us, that this could be a means to get the help we so desperately need during this difficult time, we moved forward with the idea...nervous of how we as parents would be perceived. We did it in the humble hope of providing our dearest family and friends a means to help our little girl...help her in a way that we cannot under the current circumstances. It is particularly hard for me, as a father, to admit to myself and others...that I'm not in the position to give my little girl what she needs. I know I will get there...but I am not there now...and stepping aside and letting others do what I cannot...has been challenging. However, I can say from the bottom of my heart...that I am forever changed.

Never, and I mean NEVER, could we have imagined the magnitude of goodness that exists in the hearts of those we call family, friends, and even strangers. There is a kindness and love in every corner of this world that trumps even the darkest evil, sadness, or pain.

May everyone who has helped us so much find all the blessings they stand in need of. I have never in my life felt that God is so acutely aware of us. I know He knows us...personally...but as I've spent more time on my knees than on my feet over the past few weeks...I have felt His presence...felt His reassuring hand on my shoulder...

Thanks to Him...and thanks to all of our family and friends...we can and will do this...

My dear friend and fellow writer Wes Stephenson wrote this poem. He too has a daughter with very special and wonderful challenges...

THE PITIFUL EAGLE

In the thick southern forests I used to call home
The eagle flew proudly, the sky was her throne.
'Was there 'neath a pine tree I watched as she soared;
The master of skills I’ve always adored.

She trimmed to the breezes for effortless lift,
To float like a kite on the string of her gift.
Her eyes caught a movement, at once she descends;
Then, clutching her prey, she returned to the winds.

As I sat in that forest, impressed by the sight,
A duck waddled up and he quacked with his might:
"I pity those eagles, I'm sorry for them;
Those handicapped bird-brains, they can't even swim!

Their toes look so funny, no webs on their feet;
Compared to us ducks, those birds aren't complete!"
The duck waddled off just as quick as he came,
When in flew a robin who started the same;

“I pity those eagles; it’s such a sad thing,
Those handicapped bird-brains, they can’t even sing!
Such squawking and screeching, why can’t they just ‘tweet’?
Compared to us robins, those birds aren’t complete.”

The robin flew skyward, I sat and I stared;
For fowl-mouthed opinions I wasn’t prepared.
The duck and the robin both tended to find
The lacking in others, and so they were blind

To all of the virtues the eagle displays,
Her strength and her beauty, so worthy of praise.
I learned then a lesson that reaches so far;
Forget other’s limits, just see what they are!

The News from UCSF

A world renowned MD from UCSF called my sweet wife yesterday to discuss the fetal surgery we hoped to qualify for. His hesitation was very evident in all that he said. He wanted to call us personally to discuss it because of the fondness his nurse Rachel has towards McKenzie...like she always does...Kenz touched his nurses heart through her sweet disposition. These doctors and nurses are truly wonderful miracle workers...trying everything possible to help unborn children with SB. However, sometimes their willingness and ability is thwarted by their duty to 'do no harm' and he voiced his concern with regard to this...stating that the possible risks of compounding the SB with severe prematurity far outweigh any benefits associated with the fetal surgery. One of the biggest risks associated with the fetal surgery is premature labor. Imagine a C-Section being performed...pulling the baby halfway out...performing a surgery...and then putting the baby back in...hoping it will stay there for 10 to 12 more weeks. It's incredible a procedure like this ever works! Unfortunately, McKenzie's history of delivering too early, in that she delivered Wyatt at 35 weeks 6 days...really worried the MD and everyone at UCSF associated with our case. He said he would continue to talk it over with the other physicians, but stated that our situation was a questionable one.

Our attempts to qualify for the fetal surgery came to an end early this morning. Rachel, the amazingly friendly and tenderhearted nurse at UCSF spoke to McKenzie for nearly an hour today. Ultimately it was decided that McKenzie and our little girl would not be good candidates for the fetal surgery. Rachel comforted us by explaining their decision perfectly.

She said: Most children with SB who do well...do well because of their parents. She complimented us by saying that she thought our little girl would thrive...not because of the timing of surgery...but because of the care she would receive from loving parents throughout her life. Tears fell freely from our faces as we both listened to her explanation...trying desperately to believe the compliments and reassurance she was giving. She stated that the fetal surgery has only been shown to benefit an estimated 30% of those babies who receive it. The other 70% show no benefit or worse. She ultimately stated that gambling to be one of the 30% with the risk of prematurity would not be a wise endeavor. "Imagine" she said "your baby has SB, a fetal surgery is performed, only to cause your wife to deliver at 25 or 26 weeks. Now you have a child with an open wound from surgery, SB, and all the horrible complications of prematurity, including potentially lifelong issues with lung function, neurological function, etc...it's just not worth it." We told her that we were going to strive toward the goal of fetal surgery until every avenue was exhausted...until everyone said no...and that's what we did. Rachel said that they wanted so very much to make an exception in our case...but ultimately could not come to feel comfortable with it. Who are we to argue with the best physicians in the world. If they feel that the procedure was likely to hurt our baby more that help her...then who are we to push further. We only want what is best for her...and what is best for her now is to wait until she is born...have the procedure...and nurse her to health and strength throughout the rest of her life.

It is strange how things happen. We can't help but feel the divine hand of a loving Father in Heaven in all of this. Wyatt too early but was fine in every way...and 5 years later...that fact would be the determining factor in a decision nobody alive should ever have to make...and nobody had to. It was made for us. This knowledge alone gives us peace and hope for the future. We can now look our little angel in the eyes and tell her, "we did all we could have before you were born...and we will do all that we can now and forever...to give you the life you deserve."

A BIG thank you to all our friends as UCSF for their honesty and integrity. God bless you all.

Gratitude beyond measure...

We just wanted to take a moment to thank EVERYONE who has supported our little girl with prayers, thoughts, kind words, and incredibly generous donations. I can barely type through the tears...but I am trying so desperately to reach all of you to thank you...but it doesn't seem sufficient for how we feel. We initially decreased our financial goal with regard to donations...because it was such an astronomical amount...we didn't feel like we'd ever reach it...or that people would even donate because the goal was so lofty. But we are so very humbled by the outpouring of support...and amazed at the generosity displayed. We changed the goal amount back...with confidence that it is within reach and could ultimately be the answer to many of our little girls challenges.

She doesn't even have a name yet...but still you give and give and give. I am convinced that you are all angels...sent by a loving God to help our little girl. I will forever believe this. Thank you...thank you...thank you.

The Following Weeks...

We had never understood what it meant to fear the unknown...until we were forced to wait an excruciating week to see the perinatologist at IMC in SLC. It felt like an eternity. To compound the emotions...I carried the casket of my dear grandfather William Weston Garrett to his final resting place just days before our appointment. Needless to say...we were all very drained. However, we have the most wonderful family and friends in the world and our support system is incredible.

The day came...and the our fears were confirmed. Our little girl has Spina Bifida with the opening in her spine just below L4. Children with Spina Bifida have very unique challenges that can vary greatly in severity. We can only hope and pray that our prayers will be answered and our little girl will have a chance at a relatively normal life.

Our lives are split in two. Like a large gaping wound separating decades of time, our lives suddenly changed forever on February 21st, 2012.

The day started with a blanket of nervous anticipation enveloping our household. It was the day we were going to find out...find out if our little baby to come would prefer blue or pink. Everyone had an opinion, the boys expected to become the dominant force in the home after HIS arrival. However, the girls were subtle in their confidence that the new addition would add just enough feminine to control the home forever.

The time for the ultrasound came and we all looked on in shear delight and excitement. The technician asked, "well, would you like to know what you're having?" a collective "YEAH!" was the energetic response she invited. It turns out, Mom knew all along...our precious little angel to come...would most certainly be very fond of pink.

In all the excitement, we almost overlooked the concern that suddenly swept over the technicians face. It was clear that she saw something very wrong with the images she was so meticulously reviewing. "What are you looking for?" we asked. "Just making sure everything is where it's supposed to be," she replied vaguely. But something about the look on her face and the time she spent analyzing the shape of our little girls head made us uneasy. "Does everything look alright?" we asked. "From what I can tell, but the radiologist will have to look it over," she said with an air of uncertainty that she failed to hide. "Congratulations," she said as we left the room. "Thank you so much," we replied...and we left with a false sense of hope and comfort that would fade as quickly as it appeared.

We spent the next few hours celebrating the news...calling family...texting friends...enjoying the prospects of a wonderful knew life to come. We enjoyed lunch together and talked about baby girl names...never fully agreeing on one...but pacifying those making the suggestions by complimenting the originality of their creations...then quickly offering a seemingly more appropriate name.

Then...it was time for the routine OB/GYN appointment. We arrived early and were quickly brought back to the exam room. I will always remember looking up and my beautiful wife...as in love as we've ever been...basking in the wonder that our love has once again created life.

The doctor walked in...shook my hand firmly...and sat down. He let out a big sigh and spoke words that I will foerever wish he could take back. "Well, I'm really worried about your baby girl."

The world stopped turning. In that moment, there was nothing else in the world that mattered. The triviality of current challenges caused them to fade from existence and suddenly...everything we ever knew...changed. It was like this doctor took a sword and split the timeline of our lives in two. When it comes to the words he spoke...there will forever be...before we heard them...and after.