Merry Christmas 2010: Our Letter And Card

Dear Loved Ones,
I have given much thought to what I might share in our family Christmas card this year. In the past, this letter has included fun tid-bits about each child and a general picture of how our year went. I can’t think of any tid-bits to share this year. Not because there aren’t any, and not because we haven’t laughed at plenty of funny things that our kids have said or done, but because 2010 has been a remarkable year for our family. This year will always be defined by the life and death of our youngest daughter, Annie. Many of you have followed the details of our journey with Annie on her blog. Those that haven’t and would like to know more can find her story at anniesinmyheart.blogspot.com.

Last month I was asked to speak to a group of women and was given the topic, "Angels Among Us." I was grateful for the opportunity that this gave me to express gratitude for the angels that have blessed our lives this year. It is this same topic that is on my mind as I write this letter.

There is a scripture found in the Doctrine and Covenants that I have loved for as long as I can remember. It is the 88th verse of the 84th section and it reads, "And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

15 years ago, I spoke at my brother’s missionary farewell. I shared this scripture and bore testimony that I knew that angels would accompany him on his two-year mission to Argentina. I knew that when he found himself in a foreign land among strangers and far from home and family, unseen angels would be with him and, as promised in this verse of scripture, they would encircle round about him and bear him up. I knew that angels would protect him; they would comfort him; they would guide his feet and bless his journey.

Just over four months ago, I shared this same scripture at my daughter’s funeral. My testimony of unseen angels was stronger than ever after spending four months in a hospital that had become sacred ground to me. Never has the veil been as thin for me as it was during the many weeks that I spent within the halls and walls of Primary Children’s Hospital. I know that there were many unseen angels encircling me and my family and that they were sent to bear us up in our time of need.

However, when I shared this scripture and mentioned angels at Annie’s funeral, I was not referring to these unseen angels. Instead, I was speaking of the many people that had become angels in our lives through their love and Christ-like service to our family.

Before Annie was born, Cameron and I, knowing of her heart defects, tried to prepare for every scenario we could imagine. Upon her arrival, we were quickly humbled as we realized that our preparation was no match for what we faced. There was no way we could do it all. We could not even come close to taking care of the needs of our family at home while investing the time and energy necessary at the hospital with Annie. There was simply not enough of either one of us to go around. We quickly set priorities, letting things like yard work and housework fall to the bottom of the list. Even then, we needed to feed and care for five children at home. They still needed rides to school and clean clothes to wear. Groceries still had to be bought and food still needed to be placed on the table. While all these things needed to happen, we were consumed with anxiety and grief for the suffering of our youngest daughter – sometimes so much so, that it was hard to function in any capacity outside of her hospital room. It was too much for any family to carry alone and we needed help – lots and lots of help.

Our need was great, and just as promised in the scripture that I shared previously, Heavenly Father sent angels to encircle our family and bear us up. He sent angels to feed our children, to wash our clothes and tend our little ones. He sent angels to drive kids to school and angels to visit us at the hospital. He even sent angels to weed our yard, mow our lawn and mop our floors. Angels left cards and notes and treats on our doorstep. They filled our mailbox and our inbox with words of love and encouragement. Angels brought groceries and planted flowers. They spent lots of time making sure that our five children at home felt loved and not forgotten. When Annie died, He sent angels to help us plan her funeral and honor her life. Angels came and went, often anonymously and without recognition for their good deeds. Words will never be able to adequately express our deep gratitude to these many angels. Whenever we talk about Annie’s life and the service that we received from so many, Cameron and I both describe the feeling that we had for four months was that of being carried – carried by angels in our ward and in our family, angels that worked at the hospital and angels that we also know as friends.

The scars from this experience are still fresh. We know that we will never be the same. Our hearts have never ached like they sometimes do now that Annie is gone. But our hearts have also never been filled with gratitude like they are now. We have a new appreciation for the many things with which we have been blessed, and angels are at the top of our list. Elder Jeffrey R. Holland said that "heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind." We have felt heaven close. We have felt God’s love for us and know just of what Elder Holland speaks. We are deeply grateful that God, knowing that we would suffer such loss, took great care to place us among so many angels that could and would help us lift what seemed an impossible burden. Thank you for being our angels.

Merry Christmas and much love,
Cameron, Amy, Austin, Ashleigh, Hayden, Ellie and Hadley Sabin

Annie's Tree

Through the incredible generosity of others, we were able to honor Annie with a tree at the Festival of Trees this year. Cameron's co-workers at Stoel Rives offered to sponsor the tree, and our families helped to supply the gifts beneath it. Thank you to all who made this happen! Cameron and I were both surprised at how therapeutic this was for us. We miss her so much and can't help but imagine what our holiday season might be like if she were here. Her stocking hangs on the mantle with those of our other children, reminding us every day of our sixth child that will never race up the stairs on Christmas morning to see what Santa brought for her. It lifted our hearts to decorate this beautiful tree, and pile all these beautiful gifts around it- gifts that she might have received if she were here. Again, we feel such deep gratitude to the people that have rallied around our family this year. Your love has made such a difference in our lives. We can't say thank you enough.

Below are pictures of Annie's tree and a copy of the bio that was included with her picture.

Annie's Bio for the Festival of Trees

On December 30, 2009, three months before she was born, we learned that our Annie had heart defects. Her official diagnosis was tetralogy of fallot with absent pulmonary valve. For the next several months, we waited anxiously for her birth, hoping for the best and preparing for the worst. On March 30, 2010, Annie Grace Sabin was born, and we immediately fell in love with her. She surprised us all when she did not have to be placed on a ventilator at birth, and for three beautiful weeks, we were able to hold her in our arms and close to our hearts. While she fought for every breath during this time, we cherished every minute we had with her. However, as she struggled more and more to breathe, it was decided that she needed to have open-heart surgery, and, on April 23, we watched our tiny infant daughter go into the operating room for the first time. This photograph was taken the day before she was placed on a ventilator and two days before her first surgery. Never again, until the day she died, would we see her without the ventilator tube taped to her mouth. What we hoped would be fixed with a single surgery, turned into something much more complicated. Over the course of her four-month life, Annie endured four major surgeries (two requiring bypass) and multiple minor surgeries. She was taken to the brink of death several times and continually amazed us with her will to live. She fought valiantly to be here with us. Her fight allowed us precious time to memorize tender details: her beautiful blue eyes, her long slender fingers, and the dimple in the middle of her top lip. More importantly, these months gave us a chance to really know her gentle, patient spirit. Every day with Annie was a gift. She taught us so much in her short life. Annie died on August 1, 2010. Again in our arms and close to our hearts, she took her last breath and passed away peacefully. We miss her. We love her. We will never be the same.

Cameron and Amy Sabin

Never

The past month has been a bit of a whirlwind as we have said goodbye to our sweet daughter and worked to catch up on the "normal" lives we left behind when she was born. In general, we are doing as well as one could hope. Mostly, we are at peace, but it does feel like there will always be a hole in our hearts; a piece that we will never get back, at least not in this life. I suspect that the hole will become a part of our new normal without Annie, but, that in time, the pain will subside and it won't always hurt like it does now.

A few nights ago, I was looking through some of my old blog entries and realized that I didn't really finish the story of Annie's life very well. For those that have only followed her life through this blog, the end probably seemed abrupt. In some ways, it was, as we held onto our hope that she would turn a corner and get better until her very last day with us. The last month of Annie's life was filled with suffering for all of us. It was by far, the most painful thing I have ever endured, and I pray that I will never be called to pass through this kind of suffering again. However, there were so many sweet moments along the way and it is not hard to see that Annie's life was a remarkable gift to me and many others. I am deeply grateful for the four months I was given to know Annie and for the sweet that was mixed in with the bitter all along the way.

For those that did not attend Annie's funeral, I just want to share an excerpt from my talk as I feel it completes the story of her journey with us on this earth and gives you some idea of how we are coping with her death.

"Last winter, I read an article written by Elaine S. Dalton in which she related the true story of a young girl named Agnes. Agnes was a pioneer, and at nine years of age, she crossed the plains with the Willie Handcart Company in 1856. Agnes later recounted her own journey as follows:

Although only tender years of age, I can yet close my eyes and see everything in panoramic precision before me – the ceaseless walking, walking, ever to remain in my memory. Many times I would become so tired and, childlike, would hang on the cart, only to be gently pushed away. Then I would throw myself by the side of the road and cry. Then realizing they were all passing me by, I would jump to my feet and make an extra run to catch up.

She continues:

Just before we crossed the mountains, relief wagons reached us, and it certainly was a relief. The infirm and aged were allowed to ride, all able-bodied continuing to walk. When the wagons started out, a number of us children decided to see how long we could keep up with the wagons, in hopes of being asked to ride. At least that is what my hope was. One by one they all fell out, until I was the last one remaining, so determined was I that I should get a ride. After what seemed the longest run I ever made before or since, the driver…called to me, “Say, sissy would you like a ride?” I answered in my very best manner, “Yes sir.” At this he reached over, taking my hand, clucking to his horses to make me run with legs that seemed to me could run no farther. On we went, for what to me seemed miles. What went through my head at that time was that he was the meanest man that ever lived…Just at what seemed the breaking point, he stopped. Taking a blanket, he wrapped me up and lay me in the bottom of the wagon, warm and comfortable. Here I had time to change my mind, as I surely did, knowing full well by doing this he saved me from freezing when taken into the wagon.

My journey with Annie has been very different from Agnes’ journey across the plains, but it is not hard for me to relate to her story. In the beginning of her journey, even walking was difficult. She described throwing herself by the side of the road and crying, only to get up and keep going. I am sure she wished, at times, that she did not have to make the journey. At the start of my journey with Annie, I too cried and wished that I would not be required to make this journey. I cried about simply being pregnant, and cried even more when we learned about Annie’s heart. Like Agnes, I knew I had no choice but to get up and keep going. I know we both grew stronger as the journey progressed; muscles that had previously been dormant were stretched and exercised daily. Growth was happening every single day. And yet, the trail grew increasingly difficult for both of us. I would guess that she, like I, had days so dark that she wondered if she would ever see the sun again. The journey for each of us became almost unbearable. Agnes described running along the side of the wagon, holding to the driver’s hand, desperate for relief. She said that she felt she could run no farther and yet, he required her to run for what seemed like miles. There were so many days with Annie where I felt sure I could run no farther. Many times, I told my Heavenly Father in prayer that I could not endure even one more day and yet the days stretched on and on. Towards the end I felt my hand continually outstretched, seeking God’s. I knew that He was with me, but I could not always feel Him there. I was desperate for relief and ached for the Comforter to be with me. Agnes questioned the motives of the wagon driver and there were days when I wondered what a loving Heavenly Father was seeking to accomplish by allowing such extreme suffering. Agnes said that in the end, the wagon driver stopped, scooped her up, wrapped her in a blanket and laid her in the bottom of the wagon where she could rest. It was then that she knew that what she thought was cruelty on his part was actually mercy- an act that saved her very life. In the last moments of Annie’s life and after she had passed, I too felt as though I was lifted from my suffering, wrapped in the comfort of the Holy Ghost and carried in the arms of my Savior. At last, I could see that all was well, and in every way: physically, emotionally and spiritually, I finally found rest in Him. I was able to trust that these experiences, even the great suffering that we endured, will be for our eternal good.

I have been blessed to know that Annie accomplished all that she needed to on this earth. I feel deep gratitude to have the honor of being her mother. I know that she will stand as a beacon to our family, guiding us home to her. I count the time I had with her as one of the greatest blessings I will ever receive. She taught me more in her short life than I could have learned in a lifetime otherwise. I learned that a hospital can be sacred in many of the same ways that the temple is sacred; I learned the goodness of humanity- that the world is full of really good people, people that care about the suffering of others and are moved to help lift another’s burden; I learned what it feels like to have the Savior so close that His presence is almost palpable; I learned, as David A. Bednar once said, that 'the tender mercies of the Lord are real and they do not occur randomly or merely by coincidence;' I learned that a loving Heavenly Father does not leave us alone in our trials and if we can’t feel Him we just need to hold on- in time, He will lift us from our suffering and we will feel the sun again; I learned a new appreciation for the gift our Savior gave to each of us when He was resurrected and made sure the promise that not only will Annie live again, but with a perfect heart- a beautiful gift that I will never take for granted."

I know that Annie is in a better place. I look forward with great anticipation to the day when I will be with her again. Until then, I hope the hole in my own heart will serve as a constant reminder to me of ALL that she taught me along the way- a reminder of how her life impacted mine for the better. I know that my heart will never forget those bright blue eyes and her even brighter spirit. I will never forget this beautiful angel daughter that graced my life with hers. Never.

Love You, Annie

Annie's memorial service was beautiful. I can't say thank you enough to all those who helped make it a wonderful day. Thank you to my ward members, friends and family for taking care of all the details. The table displays, the flowers, the balloons, the pictures and video, the programs, the luncheon: they were all perfect. Thank you to Hilary Weeks and Tyler Castleton for playing and singing the song "You Give," that has been on this blog for so many months. This song has carried me through more dark days than I count. Thank you to all of Annie's cousins for singing "The Family Is Of God"- you sounded beautiful! Thank you to my dad for offering the family prayer and to Cameron's dad and Bishop Brandt for speaking- you each brought the Spirit to Annie's day. And finally, thank you to all those that came to show their love and support to our family on Monday. Again, we were overwhelmed by the love of so many. It really was a sweet day: a beautiful tribute to a beautiful girl. We miss her so much it hurts, but have been surprised at how generally peaceful we have felt. We are so grateful that Annie is not suffering anymore. We feel joy in our knowledge of the plan of salvation- that we really do know that Annie is not gone from us forever. This little angel will always be a part of our family. A piece of my heart will forever be hers. I remember saying in the beginning that I knew I would never be the same after knowing and loving Annie. I can say today that this is the case. Among other things, because of her, I will love a little deeper, cry a little easier and cherish the details of every day a little more. I will always count my time with Annie as one of my life's greatest blessings. I love you, baby girl.

Annie's Obituary

ANNIE GRACE SABIN
March 30, 2010 – August 1, 2010

Our sweet Annie Grace passed away peacefully on August 1, 2010 at Primary Children’s Medical Center from complications associated with congenital heart defects. Her bright eyes, patient spirit and seemingly endless will carried her and us through many dark days. Annie fought courageously and relentlessly to overcome her physical challenges, which at times seemed insurmountable. Though her life here was short, she touched many. We know she continues to live on elsewhere and to carry on that work there. We are heartbroken by our loss, but trust in a loving Heavenly Father to care for Annie until we can be with her again.

Annie is survived by her parents, Amy and Cameron; her brothers and sisters, Austin (13), Ashleigh (10), Hayden (7), Ellie (3), and Hadley (1); and her grandparents, aunts, uncles, and cousins.

We give special thanks to family, friends, and loving ward members who walked this road with us and, at times, carried us. We could never have made it through without you! We also express love and appreciation to the wonderful doctors, nurses, respiratory therapists, and others at Primary Children’s Medical Center who loved and cared for Annie and our family. We are much better people for having known and loved you. We hope that Annie’s life will be seen for the miracle that it was – that we were allowed four precious months to know and love her, and to witness her impact on so many.

Funeral services for Annie will be held at 11:00 a.m. on August 9, 2010 at the Lehi North Stake Center, 3200 N. 600 E., Lehi, Utah. A viewing will be held prior to the funeral services from 9:30 to 10:30 a.m. Interment will be at the Lehi Cemetery. Funeral services will be provided by Warenski Funeral Home.

Sweet Annie Grace

Our sweet Annie Grace passed away today. Never has a little girl been more loved than this one. Our hearts are broken, but hers is no longer. We feel peace in knowing that she is free from the pain and suffering that has always accompanied her in this life and look forward with great anticipation to being with her in the next. We are not able to say thank you enough to all that have carried us through this journey. We could never have endured this impossible burden without the countless angels that have served and blessed our family over the past several months. We love you. Thank you for loving us.

A Fine Mess

I know that this post is way overdue. Annie is not doing well and it is has been hard to do anything but be with her right now. Although Annie came through Friday's surgery well enough, within 24 hours, she was struggling again. The fluid that we were hoping would decrease after surgery has come back with a vengeance, and she is again putting out more than a liter a day. In addition, Annie responded to this surgery as she has to surgeries in the past: with lots of swelling. The swelling makes it difficult for her lungs to expand and for the ventilator to give her the size of breath she needs to be well oxygenated. If she gets upset, this only makes the problem worse as she bears down in anger and fights against the ventilator, leading to a very scary cycle that is difficult to break. These issues began Sunday night, and when I arrived on Monday morning, it was clear that Annie was in really bad shape. The doctor wanted to meet with us and discuss where we should go from here. He told us that, as far as they are concerned, there is no hope that Annie can recover. I asked why, in spite of her terrible condition, had her kidneys and blood pressure suddenly improved. He had no answer for this, but told me that it did not matter as the chest tube output had not decreased with the surgery. He encouraged us to think about removing the support that we are giving Annie and letting her pass. He explained that, ethically speaking, there is no difference between putting a breathing tube in and taking one out. That while she is alive, it is because of the artificial support that she is being given and therefore, we might find peace in knowing that her death would be a "natural" one. Maybe that sounds good when you read it in a medical journal, but no journal article can account for what it is to be the mother of a bright-blue-eyed four month old daughter that is SO there. Granted, she makes no sound, but she is still there. She maintains eye contact for long periods of time and listens closely when I talk to her. She has a personality that is patient and mild. She has a spirit that lives in this body and who am I to decide when her mission is done? Her quality of life is not what I would want for any baby, but this is her life and she has known very little otherwise. Interesting, how her life is not viewed as inhumane until the doctors have nothing else to offer her. Of course, we don't want her to suffer; we love her more than anyone else possibly could. We did tell the doctor that if the struggle on the ventilator should continue, we were not willing to stand by and watch her starve for air for days on end; that if that were the case, we would view withdrawal of support as a merciful decision on her behalf. However, we have seen Annie swell many times in the past and watched her recover again and again. The doctor told us that he fully expected her swelling and breathing issues to worsen and never get better. Thankfully, he was wrong, and the swelling has decreased and she is again being ventilated successfully.

And, there you have it: what a fine mess we are in. We told the doctor yesterday, that as long as we can keep Annie comfortable, we would like to give her time and see if she will make the decision on her own. Neither one of us feels comfortable making this choice for her right now and are praying mightily that we will not ever have to. The truth is that we still have hope for Annie; we hope every day that things are going to get better and she will begin an upward climb. I don't think we will be done hoping until she is gone. At the same time, we fully understand that, medically speaking, her condition is hopeless. Finding peace between hope and hopelessness is quite a challenge. A fine mess indeed.

Hoping For Good News

Annie came through today's surgery just fine. She was in the operating room for nearly three hours, after which, Dr. Burch let us know how he felt the procedure went. He said that while about 65% of people have one major thoracic duct, the remaining 35% have a variation in this area of the lymphatic system. Not surprisingly, Annie fell in the group with a variation. He said that where a single thoracic duct would typically be found, he was able to instead see two large ducts and several smaller ones in the surrounding tissue. He ligated and placed staples in all the ones that he could see. He then used a glue to cover the area and hopefully seal any leaks that he had missed. He told us that while he had intended to do a pleuradesis (scraping of the chest wall that they did during her last major surgery), he found that the lung had already formed scar tissue and was adhered to the chest wall. Therefore, the pleuradesis was not necessary, except for in the small area that he had been working. We were so glad to hear this, as we believe that this is what Annie responded so poorly to last time. Following today's surgery, Annie has done quite well. She is swollen, but not drastically more so than she was this morning. Her pain has seemed to be well controlled and tonight she is resting comfortably. Over the course of the next few days, we will see if this surgery has been successful in decreasing her chest tube drainage. We are, as always, hoping for some good news in the coming days. Thank you for all the prayers that have been said on behalf of Annie and her doctors today. We appreciate each and every one.

Holding Fast

Monday morning, as I was reading articles online (I do this all the time right now), I decided to look up chylothorax (a condition that we believe Annie has and could be causing much, if not all, of the drainage from her chest). I had already read these articles, weeks before, but began to review them again. As I read about the treatment options for this condition, I realized that we have tried all but one: a thoracic duct ligation. We were planning to do this during her last surgery, but the night before she went into the OR, Dr. Burch let me know that he didn't think it was necessary and that he wanted to avoid having to operate on her right side, which he would have to do in order to ligate the duct. He proceeded with the surgery on her left side, and not only did she respond very poorly to the operation, it did nothing to decrease the drainage. After reading about the procedure on Monday, I started asking some of the doctors why a ligation was not an option at this point in time. After talking with several doctors, I realized that while I was not alone in thinking that this might be successful, Dr. Burch was opposed to doing the procedure. Hoping to understand his views better and to possibly convince him to try once more to resolve all the drainage from Annie's chest, Cameron and I requested to meet with him. Tuesday afternoon, we sat down with him and discussed the possibility of doing this minor surgery (of course, we know that no surgery for Annie is minor at this point). He let us know that he does not feel optimistic that a thoracic duct ligation will put an end to all the fluid and is concerned about how Annie will respond to any procedure, as she is obviously very fragile right now. He told us that he does not have hope that Annie will survive, regardless of what we do. However, he said he was willing to do the procedure, if that is what we wanted. Next, we met with the head of cardiology and he let us know that they had received word from Stanford. Interestingly enough, the only recommendation that they made was to do a thoracic duct ligation. After meeting with both of these doctors, Cameron and I decided to ask Dr. Burch to do the ligation. We are, of course, very worried about how Annie will respond to another surgery, but do not believe that we will feel peace in her passing if we don't turn over this one last stone. Dr. Burch is planning to do the surgery sometime on Friday.

What a long and difficult struggle this has turned out to be. When Annie was born, I could never have predicted that we would be here, almost four months later, still holding our breath in anticipation of what will be. In one moment, our hearts are filled with hope, and in the next, they are heavy with despair. Some days, I feel complete trust in the Lord to carry out what I know is His perfect plan, and others, I feel nothing but panic at my inability to control any of this. More than once, we have been taken to the brink of death with Annie, sure that she cannot survive much longer, and yet, she lives on. So much contradiction. So much back and forth. So little ability to keep the peace that comes and goes. Last week, I joked with one of the Nurse Practitioners that when our days in the CICU are behind us, I might need to be treated for Post Traumatic Stress Disorder. He quickly responded, in all seriousness, that this may indeed be necessary. This same NP spent almost an hour with me today, talking about the toll that all of this is taking on my life and offering excellent advice on how to cope with the immense stress and pressure that I am under every day. He was recently an LDS bishop and, because we share the same beliefs, we were able to talk about the spiritual elements of this journey as well. During the conversation, he referred to Jospeh Smith's experience in Liberty Jail. He pointed out that even though Joseph had already seen God the Father once, and Jesus Christ on more than one previous occasion, at this dark time in his life he questioned where They were. He wondered how They could stand by and watch his suffering without intervening. The Lord responded to his cry and promised peace and future blessings to Joseph if he would endure the trial well. I was so grateful that he talked about this, because every single day this week, I have read and re-read these exact verses of scripture and have felt some of what Joseph felt then. In spite of previous experience that has taught me otherwise, I have sometimes felt alone in this. At times, I have pled for peace and felt none. And yet, like Joseph, I have also felt His promise of future peace and blessings, no matter how Annie's fight for this life ends. I am holding fast to that promise and doing my best to endure this well.

Update

Not much has changed since my last post, but I figured I was due for an update. Annie is a little less swollen and much more comfortable than she was last weekend. I am so grateful for this as we all struggle the most when she is miserable. She is still draining too much fluid, and while there are many theories as to why, the bottom line is that nobody really knows. She was again discussed in the conference on Wednesday and the results of that meeting are as follows: The surgeons here do not feel that there is anything more that they can do for Annie. Some people in the meeting thought that maybe we should send her work-up to a different hospital in the country so that another team could weigh in on her condition. We felt good about this, and today, her file is being sent to Stanford. We will hopefully hear back from them next week. While I am so grateful that we are able to pursue other opinions, the thought of actually taking Annie to California scares me. If it comes to this, it would be a very difficult challenge for our large family, but I trust that with our Heavenly Father's help, we will be guided in any decisions that might need to be made. The doctors here want to try a couple of different medications, each one a bit of a shot in the dark, but certainly worth a try. The team also discussed our decision to "stay the course" when some feel that this is hopeless. It sounds like many opinions were expressed, but the prevailing sentiment was that while they are obligated to be honest with us regarding Annie's condition, it is not their job to decide when it is truly hopeless. The team of doctors on this week has been wonderful in this regard. I am so thankful for this, as the hardest days are those when I feel pressured to make a decision that I am not comfortable with or feel unsupported in the decisions that we do make. We have been introduced to the palliative care team here and they have been such a blessing in helping us to communicate with the ICU doctors about our wishes regarding Annie's care. Really, this hospital and its' staff have been amazing- such good people that all want what is best for Annie. We are blessed to be in their care. We are also blessed to be in the care of so many who have offered love, support and prayers to our family. Thank you for this as I know that it is where I get the strength to do this every day.

Tough Spot

For some reason, it is so hard to update this blog right now. I think it is because we are struggling to figure out which direction Annie is going. We still have hope that Annie is going to pull through this, but she has not made any great strides in that direction. The good news is that her SVC appears to be open and free from clots right now. The doctors ended the tPA yesterday morning and she seemed to tolerate it well enough. The bad news is that she is extremely swollen and is still putting way too much out of her chest tubes (about half of what she was, but still too much). I have decided that needing a miracle is a tough spot to be in. I keep thinking of all the stories in the scriptures when miracles were granted and feel a certain degree of sympathy for those that had to exhibit faith in the face of seemingly insurmountable odds. We certainly don't feel like we deserve or have earned a miracle in any way, but have not given up hope that one might still be granted. The last couple of weeks have been, by far, the most painful of this entire experience as it has become increasingly difficult to feel peace. I am so grateful for the moments when I have felt peace and pray that peace will be with me in the days and weeks ahead.

A Piece of Good News

I am so happy that I finally have a piece of good news to share about Annie tonight! Yesterday, Annie went to the cath lab so the doctors could attempt placing a stent in her superior vena cava, the main vein that flows into the heart. The doctors believed it was clotted and, if so, could be a major factor in the excessive drainage from her chest tubes. Before attempting this procedure, they expressed concern that the SVC might be entirely clotted off. If this were the case, they would not be able to thread a wire through it and there would be nothing they could do to try and help her. She had been scheduled to go today (Friday), but at the last minute, they found room to take her yesterday. They placed a catheter and injected dye into her venous system to see if there was any flow through the SVC and into the heart. They were disappointed that the dye did not show any flow through the SVC, but when they attempted to thread the wire through, they somehow succeeded. They also threaded the wire through the left innominate vein (a major branch of the SVC that was also clotted) and were then able to pull a balloon through and restore blood flow to both of these veins. They then placed a stent in her SVC, but as soon as they were finished, she began to clot above and around the stent in both veins. They ballooned them open again, and she began to clot again. At that point they decided to start tPA, the clot buster drug that we tried last week. This time, the catheter used for placing the stent could be used to administer the drug right at the site and the hope was, that because these clots were new, the tPA would be successful in dissolving them. Tonight, after running tPA for 24 hours, Annie went back to the cath lab so they could again inject dye and see if the clots were progressing or resolving. If they were found to be progressing, the doctors told me that nothing more could be done (I have heard this before, but know that we really are reaching the end of medical options for Annie).

After being with Annie for a short time, the doctors let us know that the tPA was working; the clots were much smaller and the flow through these two veins was really good! Such good news after two weeks of nothing but bad news! Amazing, how a little hope from the medical team can lift our spirits. The plan is to continue to run the tPA through the weekend in an effort to completely resolve the clots and then hope that she won't form clots again when the tPA is ended. Even if this works, Annie has a huge mountain to climb in order to get better and come home. In the eyes of the doctors, it is still a long shot, if not impossible. We understand that, but Annie has surprised them before and just might be capable of doing it again. Dr. Kaza stopped by her room on Wednesday and told me that while they are certainly going to "extraordinary" measures for Annie, he personally had not lost all hope for her. This was the first time we had heard any doctor express any hope in almost two weeks. We are praying that Annie gives the rest of them reason to change their minds!

Still Fighting

Annie is still fighting to stay with us. This little girl has such a strong spirit! Her chest tube drainage has not decreased and we know that this, by itself, is not compatible with life. However, she is still alert and very aware of her surroundings. She watches anyone that approaches her bed very carefully and draws them in with her beautiful blue eyes. Even puffy and swollen, she is such a darling baby. It is hard to reconcile all of her normal baby behaviors with what is happening to her body. Yesterday, we requested to meet with the cardiologist that specializes in clots. We know that the doctors have exhausted all conventional means of dealing with this problem, but were hoping that they might be willing to look outside of "the box." Today, after much discussion, they approached us with one more idea. They feel that placing a stent in her superior vena cava could help reduce some of the pressure in her venous system and decrease the amount of fluid draining from the chest tubes. Placing it could prove to be difficult or even impossible. As always, this procedure carries a fair amount of risk to Annie. We are willing to take the risk involved, as the alternative is to stand by and watch her decline.

We have struggled to keep our spirits up during the last week-and-a-half as the doctors have lost all hope that Annie will survive. We are not in denial about how sick our daughter is, but we still have hope, and will hold onto that hope until she is taken from us. We understand the reality of what is happening to Annie, but also know that if it is God's will for her to stay with us, He can overcome all obstacles. It is not our desire to change His will, only to respond in faith to whatever we are called to pass through.

Heartbroken

In spite of our hopes for a miracle, Annie continues to decline. The doctors made one final attempt yesterday to break up her clots and did not succeed in making any difference. Her chest tube drainage has increased every day and is pouring out of her at alarming levels. We had a long talk with the doctors today and everyone feels that Annie's earthly mission is coming to an end. We are heartbroken as we always thought we would bring her home, at least for a time. Our sadness, however, is for us, not for Annie. We know that she would be much better off with her Heavenly Father, freed from this broken and bruised body. We love you all. This has been the hardest thing we have ever had to face and want you to know that you have been such a blessing in helping us get through it.

Agony

I am exhausted tonight, so this post will not be long. Annie is not doing well. In spite of Friday's surgery, she continues to drain massive amounts of fluid out of her chest tubes and the doctors are offering very little hope that she will survive. We have agonized over this as we don't want our little baby to suffer any more, but have always believed that we would bring Annie home to us and still hope for that end. The doctors believe that Annie is dumping so much fluid because of the development of a clot in her superior vena cava that has now extended into her jugular vein. These clots increase her venous pressures and make it easier for fluid to leak out of the vessels than to stay in them where it belongs. We never saw this coming as we have always been so worried about her heart function and airways. It is hard to process that while we may have resolved these major things with surgery, the doctors are telling us she is dying because of a clot. Cameron and I have spent much time fasting, praying, going to the temple and doing all the things that we need to do to receive answers for Annie. Yesterday, we spent time with President Christofferson (first counselor in our stake presidency and our previous bishop), and with our current bishop and his second counselor. The time we spent with these good men was definitely a tender mercy as we were feeling so overwhelmed with the reality of what is happening to Annie's little body and trying to reconcile this with our feelings of what Annie's mission entails. Last night, as we talked with Bishop Brandt and Brother Allen, the spirit was very strong and helped us know what we need to do going forward. We decided to push onward. To let the doctors know that we are not prepared to quit. We discussed that Annie must have some agency in this as well and if she decides she cannot do it anymore, she can make the choice to go home to heaven. We will continue to fight to keep her here, trusting that God's will will be, whether it is that she stay or go. We know that Annie cannot continue as she is much longer and take some comfort in knowing that either way, her suffering should not be prolonged. We believe that either she will get better soon or she will pass away soon. We still believe that God is capable of turning this around and are praying with all of our might for that end. We also believe that should she go, our Heavenly Father will help us to understand the feelings we have had concerning her mission and all will still be well. Oh, how we love this girl. How we want to bring her home and watch her grow. Last night the bishop quoted the scripure that says "All flesh is in mine hands; be still and know that I am God." Every time I feel the fear rising in my throat I think of this scripture. Please continue to pray for a miracle as we know we need one.

Holding My Heart

The past two days have been the most difficult of my life. I know I have probably said that in more than one previous post, but the statement is again true. Annie came out of surgery Friday night and things looked good. Her chest tube output seemed to be slowing and she appeared to be stable. However, within a few hours, she took a turn for the worse. To begin with, her arterial line went bad. This line is used to draw blood and is very important because blood tells the doctors all kinds of critical information about what is happening inside of Annie's body. We were so grateful that the fellow on for the night was able to place another one, but within a few short hours, this one went bad as well. This time, the doctors were unable to replace it. By 11:00 pm, Annie's abdomen started to swell and this continued throughout the night. By the next morning, she was in really bad shape. She was extremely swollen, and the emergency we had worried about the previous day was now a reality, as the doctors did not have the IV access they needed to draw blood and give her all the medications that she needed. They were doing heel sticks to get her blood gas levels and the numbers showed that she was dangerously acidotic. And, because of the massive swelling, they were having a difficult time successfully ventilating her, which was making her even more acidotic. Bottom line: our worst nightmare was coming true. We woke up Saturday morning with very heavy hearts as we knew that if things did not change for the better very soon, our Annie would not be with us much longer.

When we arrived at her room Saturday morning, the doctors wanted to meet with us in the conference room- never a good thing. Everyone was stressed and emotional as many believed that Annie might not even make it through the day. The doctors sat down with us and let us know what a predicament Annie was in. Dr. Delgado explained that we HAD to have an arterial line (most of the doctors were unwilling to attempt this because of Annie's extremely fragile condition, but thankfully, Dr. Kaza wanted to try and get one with a "cut-down" method). Annie needed her ventilator tube changed because the one she had had a significant air leak and they needed to get a better handle on ventilating her. And, they felt that placing a new drain in her abdomen was their best shot at removing fluid and reducing the swelling and pressure in her body. Dr. Delgado told us that she believed that all of these procedures carried great risk to Annie and that any one of them could cause her heart to stop. She needed to know if we wanted them to do CPR if it came to that. Wow. This is the conversation that no parent ever wants to have. Thankfully, our bishop was with us in this meeting and we were able to counsel with him in this decision. In light of the blessings we and Annie have been given and the direction we feel we have received from our Heavenly Father, we told the doctors that we were not ready to give up on Annie and if she needed CPR we wanted them to provide it. We sensed that some felt that this was the wrong choice, but as Annie's parents, it is our job to advocate for her and do what we think is best. While we don't want to see her suffer endlessly, we want to give her every opportunity for life and know that this would bring us peace if she were to pass away. Thankfully, it never came to that. They did all three procedures and Annie's heart tolerated all of them. Dr. Kaza was successful in placing both an arterial and a venous line. The art line has been temperamental, but everyone is taking great care to treat it with every precaution so that we can preserve it for as long as possible. The breathing tube was changed out for one that is a better fit and they have been able to ventilate her more adequately since then. They placed the drain in her abdomen, but were disappointed when only a small amount of fluid drained from the tube. They were hoping that placing the drain would make a significant difference in the amount of swelling that Annie has, but it has not.

Today, Annie is doing slightly better. Not great, by any stretch, but a bit better than yesterday. She is still very swollen, but her blood gasses have improved and she is no longer acidotic. Yesterday Dr. Kaza recommended to the CICU doctors that they work to support her through these next few days and let her let us know if this is something she cannot recover from. He told us yesterday that he is deeply religious and the eternal optimist and he thinks it is too soon to give up on Annie just yet. He said he feels that it is our responsibility to do everything we can for her, making sure she is comfortable, and leave the rest to God. We feel very good about this plan and are so grateful that he was willing to intervene when others were not, for his kindness to our family, and for his determination to stick with Annie and give her the best possible chance to recover from all of this.

There has been one moment in this experience with Annie that, in a way, sums up all of it up for me. Four days after Annie's first surgery, we lived through what Cameron refers to as "Black Monday." Until this most recent weekend, "Black Monday" was the closest we have ever come to losing Annie. Her heart rate was sky high most of the day and after calling for the crash cart twice and administering every medication possible, the doctors were running out of options to help her. I had listened to her heart beat between 200 and 240 beats per minute on the monitor for most of the day. Around 5:30 that evening, the surgeon came to her room and within a few moments, he was preparing to go inside her chest. I was in shock. I could not believe that they were not asking us to leave the room (I definitely didn't want to leave, but until this point in time we had never even been allowed to be in the room when they changed her bandages). We stepped outside her door, so we would be out of the way, but I was able to watch everything that was happening in that room. When Dr. Burch removed the bandage from her chest, I immediately saw her tiny beating heart. It wasn't until then that I really knew how scary this all was. Even though I had listened to her heart beat all day, I didn't grasp how fast it was beating until I saw it with my own eyes. It was as if her heart was panicking, beating faster than I could bring my two fingers together in sync with it. Seeing it helped me to understand why a heart beating that fast could not sustain life. There was simply not enough time for it to fill with blood and pump it to the body. I watched the doctor hold her heart in his hand and lift her lung in an effort to place another chest tube that he believed could help her. While he was doing this, her heart slowed down and the monitor showed that it was beating in the 140s. Perfect! I was so excited and felt sure that he had fixed whatever the problem was, but by the time he replaced her bandage and stepped into the hall to talk to us, her heart rate was again above 200. I was so frustrated and expressed to the him that he must have placed the tube in the wrong spot, as her numbers had improved for a time but were now worse again. He very patiently explained to me that this had nothing to do with where he had placed the tube. It was actually the pressure of his hand on her heart that had helped it to calm down and slow to a more reasonable rate. He told me that it was unreasonable for someone to hold her heart in their hand until she got better (I volunteered, but he gently declined my offer).

I think about this day often. Partly because it was such an unbelievable experience, but mostly because it has come to symbolize what my Heavenly Father has done for me during these last several months. Panic has become a familiar feeling for me. There is no better word to describe how I have felt on so many occasions with Annie. My heart has ached and raced and been filled with dread and fear for her. At times, I have been almost overcome with panic, but each time this happens, I feel like Heavenly Father reaches down from heaven and holds my heart in His hands until I am able to feel peace again. When the feeling of panic returns, I don't sense the disappointment that you might expect from a Father who has told His child again and again that all would be well if they would just trust Him. He just reaches down and holds my heart. Tonight my heart is in His hands and I am at peace. A remarkable gift.

But If Not

Annie came through today's surgery just fine. The surgeon did the procedures that I described in my last post as well as an aortapexy (tacking the aorta to the back wall of her chest cavity in an effort to give more relief to her bronchus where it is compressed). Last night, when Dr. Burch called to talk things through with me, he let me know that while he does not feel extreme optimism that today's procedures will do the trick, not doing anything is not an option and will surely gaurantee failure. This morning Annie weighed what she did on the morning of her very first surgery at the age of three-and-a-half weeks. She is losing weight every day right now. The bottom line is that this has to work or Annie will be in a very scary place in a short amount of time. The IV situation has not improved- even the anesthesiologist was unable to place an IV in the operating room. The doctors are nervous, and hope that Annie remains stable through the night, as otherwise, this could quickly become an emergency situation for her. If the chest tube drainage slows over the next few days, things should get better with the IV situation as well, as they will need less access for meds and nutrition. We are all praying for that!

I keep thinking about a talk I heard in general conference several years ago, titled, "But, If Not..." In this talk, Elder Dennis Simmons told the story found in the Bible of Shadrach, Meshach and Abed-nago. These men were about to be thrown into a fiery furnace because they refused to worship anyone but the true and living God. They had absolute faith that their God could save them from destruction, that He was far more powerful than any earthly force. Their faith was remarkable, but the most striking part of the story was in their ability to say "but, if not." When faced with imminent destruction, Elder Simmons states, "the three young men quickly and confidently responded, 'If it be so [if you cast us into the furnace], our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand." Then, Elder Simmons noted, "That sounds like my eighth-grade kind of faith. But then they demonstrated that they fully understood what faith is . . . . 'But if not, . . . we will not serve thy gods, nor worship the golden image which thou hast set up.' That is a statement of true faith."

Elder Simmons went on to say, "They knew that they could trust God—even if things didn't turn out the way they hoped. They knew that faith is more than mental assent, more than an acknowledgment that God lives. Faith is total trust in Him. Faith is believing that although we do not understand all things, He does. Faith is knowing that although our power is limited, His is not. Faith in Jesus Christ consists of complete reliance on Him."

"Shadrach, Meshach, and Abed-nego knew they could always rely on Him because they knew His plan, and they knew that He does not change. They knew, as we know, that mortality is not an accident of nature. It is a brief segment of the great plan of our loving Father in Heaven to make it possible for us, His sons and daughters, to achieve the same blessings He enjoys, if we are willing. They would follow God; they would exercise faith in Him. He would deliver them, but if not—and we know the rest of the story."

I loved this talk when I heard it the first time. I remember thinking how I wanted to have that kind of faith, the "but if not" kind of faith. Not just faith in the good times, but faith when things didn't work out like I thought or hoped they would. Well, now I have this baby daughter and more than anything, I want her to get her miracle. I want her to be delivered from her sickness, from the ventilator, from this bed and from this hospital. I have never wanted anything like I want this. I have complete faith that God is capable of granting this miracle, but what if He does not? What if His plan for Annie and our family is far from the desires of my heart? I have spent much time thinking about this lately. While it is impossible to predict exactly how I will feel if things turn out poorly for Annie, I will never be able to deny that the Lord has been with me in this. I really know He has. Every day, I pull into the parking lot here at the hospital, and before I even get out of the car, I put my headphones in my ears and turn on a song that helps me feel the Spirit. Somehow, this seems to soften the edges on this whole hospital experience and makes coming here just a little more bearable. And every day, I feel like the Savior meets me at the door. He climbs the steps with me and walks down the hall and comes into her room with me every day. So, while I still get scared when I think too much about what the future holds for Annie, I feel like I can say that no matter what comes, my faith in Him will still be solid. I have had too many sacred experiences to ever feel otherwise. I know He is capable of granting any miracle that we could ever wish for Annie, but if not, He will be with us through it all. I know what blessings I want for Him to bestow on my baby girl, but if not, I know that He will bless her still. I know as Elder Simmons knows, that while "we don't seek tribulation, if we respond in faith, the Lord strengthens us. The but if nots can become remarkable blessings." I know what I hope for Annie's future, but if not, I know that I can trust Him to meet us at the door, climb the steps and be with us every day. Every single day.

Aching

Today is one of those days when everything hurts just a little- even breathing. My heart is aching for Annie as she is facing yet another surgery tomorrow. She has proven that she is a fighter, but how much more can her fragile little body endure? In spite of administering the medication that I mentioned in my previous post, she continues to drain way too much fluid from her chest tube. Tomorrow, the surgeon is planning to do a thoracic duct ligation (stapling the duct that the fluid is believed to be leaking from), a pleurodesis (abrading the chest wall to encourage scar tissue to form and eliminate the space where the fluid is accumulating), and a plication (tacking down) of her left diaphragm. The ligation and pleurodesis are both attempts to stop the excessive drainage, while the plication is hoped to help her ability to breathe. She will not have to go on bypass for these procedures so, in that regard, this surgery is not as scary as the previous two. However, Annie's overall health has been declining as she has not been able to retain the nutrition that she needs to build strength and do so many important things: breathe, grow, fight infection, and recover from surgery one more time. The other issue that is becoming quite serious is her IV access. She still needs quite a few meds and is receiving her nutrition through IVs but, it is becoming more and more difficult to find veins that can be successfully used for this. Last night, the IV team spent an hour-and-a-half attempting to place a peripheral IV with no luck. This situtaion is becoming somewhat desperate. Hopefully, the anesthesiologist tomorrow will be able to get the lines placed that are needed for the surgery and her recovery.

While we are disheartened that Annie is again heading to the operating room, we just keep remembering what we have known all along: She is in God's hands and with His power, all things are possible. I love this quote that someone shared with me recently:

"If you are helpless, He is not. If you are lost, He is not. If you don't know what to do next, He knows. It would take a miracle, you say? Well, if it takes a miracle, why not?"

Boyd K. Packer

We certainly don't have all the answers. Even these amazing doctors don't have all the answers. We don't have them, but God most definitely does. She could not be in better hands than His.

Struggling

Annie is struggling again. This is SO frustrating, especially because we were so close to attempting extubation! So, here is the scoop: she is still draining tons of fluid from her chest, even though she is not receiving nutrition through her NJ tube; she has been spiking fevers over the last couple of days; she has had two broviac lines placed and is running out of other options for IV access (a broviac is a port that is intended for very long term IV access- i.e: for patients requiring chemotherapy; they are placed in the O.R. and her first one broke after only two days!); AND she has had to have her ventilator support increased as she has struggled with rapid breathing and less than ideal blood gasses. The fluid draining from her chest tube is the top priority at this point. She has not responded to changing her formula or ending her feeds, so the plan is to try a medication (one that has not been used widely for this, but has been shown to work in some cases). If the drainage does not slow down in the next few days, then they want to do another surgery (success with this is also questionable). I hate to even say the 'S' word out loud! Annie needs a break so badly. Hopefully, we will find the answers needed to help her heal and get better. Maybe, if we can fix the drainage from her chest tube and get her the nutrition that she so desperately needs, everything else will improve as well. Thank you for your prayers for Annie and her doctors. Please keep them coming!

Constant

Annie is still moving towards extubation. She is so close! The doctors will probably be attempting it within the next week. I want so much for her to be successful, but am trying to prepare myself in case she is not. This week has had challenges, but thankfully, the ventilator has not been at the top of the list. Over the last few days, Annie has struggled with fever, clots, arrythmias, high blood pressure, pain, diarrhea, withdrawal, and absorbing her nutrition. How's that for a list? Most of these things are improving. She has a large clot in her SVC that will likely take months to resolve and her nutrition status is still causing a fair amount of concern. For now, the doctors have decided to stop feeding her through her NJ tube and instead are going back to IV nutrition. This is frustrating, because nutrition would help her get stronger in every way, and can become life threatening if they don't eventually figure out and remedy the problem.

Life is never dull with Annie. She is, no doubt, keeping everyone on their toes. One of the surgeons said to us two weeks ago, "Annie is fascinating. Even when I go on vacation I get all kinds of email about Annie!" The cardiologist on service this week told Cameron that everyone is flustered because Annie is so complicated and never does what they expect her to do. Last night the intensivist commented that Annie must be a "thrill seeker," because she seems to prefer living on the edge. We hear things like this almost daily, but they are always said with love and regard for Annie. Everyone told us that this experience would be a roller coaster ride. I believed them, but was still unprepared for just how big and long the ride would be. One day we are up and the next we are down. No two days feel the same! People ask me all the time how I am coping with all of this. I hope this blog has been honest enough that you know that I have had plenty of hard days and tears, but in general I feel like I am coping pretty well- much better than I ever would have guessed I could. So, last night, I woke up at 3:00 a.m. and could not sleep. This was unusual because I was not feeling particularly worried about Annie. Again and again, I felt prompted by the spirit to share where I find strength in all of this. This is the thought that kept coming to me: as unpredictable, frightening and frustrating as all of this with Annie has been, some things in my life have remained rock-solid, un-changing and constant. These are the things that have kept me grounded and given me strength through all the ups and downs. These are the things that have made this seemingly unbearable trial, bearable.

The first is my testimony of the gospel, and particularly of the Book of Mormon and the Priesthood. These two things have brought the spirit into my heart and life when all else was chaos. There have been times when I have felt so powerless and scared with all that is happening, but I have always been able to find comfort and direction in these two sources of His word for me. I feel deep gratitude for this blessing in my life. I know that this would be an entirely different experience were it not for my testimony of these things.

The second is the love of others. I have said it before, but feel like I can't say it enough. Your love for Annie and our family has been such a blessing to us. I feel like we are the service project that won't go away, but you just keep responding with endless love, prayers and kindness.

The third thing that has been with me through all of this is the love of God. I was promised early on that He would be with me through this entire experience and I know that He has. I really know that there is purpose in Annie's suffering and that in spite of these hardships, our Heavenly Father's plan is a plan of happiness. I know that I can trust Him to bless my life and Annie's life with happiness among these trials. Last night, the words that kept coming to my mind were: "Constant He is and kind; Love without end." I knew they were from a hymn but could not think of which one until this morning, when I remembered that they were from the hymn, "Where Can I Turn For Peace?" How fitting, as this was the very subject that was on my mind.

There is little about this journey with Annie that has been peaceful, and yet, in my heart, I have felt mostly peaceful. I know that it is these constant sources of strength in my life that have blessed me with this peace.

Progress

Annie is doing well! After they closed her chest, she struggled some to keep her blood pressure up, but by that evening she had stabilized. She still has arrhythmias when she gets upset, but in general, they seem to be decreasing. Her bronchus has remained open and her lungs have shown gradual improvement every day. This is really good news and we are very grateful for how well she has done since her second surgery. Her recovery has been so much better this time around. It took her more than a month following the first surgery to reach the same level of recovery that she has reached following this surgery in about about a week. They are slowly removing lines and tubes, and hopefully we will be able to hold her soon. All eyes are again on the ventilator as we look to weaning her from it. Her ventilator settings are still quite low, and will not need to be adjusted much before extubation, but Annie is very weak. The focus is now on increasing her nutrition and helping her gain strength. The doctors have all expressed concern that Annie may not be successful in coming off of the ventilator as it is providing positive pressure that helps to stent open her airways. Of course, I am nervous about this and have known all along that this would be a very big hurdle for Annie. But, I am thankful for how far she has come and have hope that she will continue to make progress towards our biggest goal for her at this point: coming home to our family.

Thank you to all that have sent letters to Annie! I know that they will be a treasure to her some day. Thank you for your love and prayers for Annie and our family. This has been such a long journey, and it is far from finished, but you have stuck with us through it all. We really are so blessed.

Dear Annie

Today has been another big day for Annie. The surgeon decided to close her chest this morning and again we waited in her room, anxious for news from the OR. The surgery team coordinated with the ENT doctor so that he could again do a bronchoscopy and see how occluded her bronchus was when her chest was closed. After the surgery was complete we met with Dr. Burch who let us know that the bronchoscopy showed that her bronchus was more occluded following today's closure than it was following the surgery on Thursday (it is approx. 35-40% open today and was 50% open following Thursday's surgery). This is still better than it was before the surgery on Thursday, as it had been 100% occluded, but we will have to wait and see if it is open enough for Annie to breathe and not trap air. More waiting! The doctors feel like they will have a fairly good idea in the next couple of days of how her lungs are doing and how well she is moving air in and out of them. Everyone wants this to work and for Annie to get better. No one wants it more than me

While I have never believed that everything happens for a reason, I am absolutely sure that some things do. Most of you know that Annie was never part of our plans. After we had Hadley, my motto became, "Five is a lot!" I must have said it ten times a day. Every time someone would ask how things were with the new baby, I would answer, "Five is a lot!" It shouldn't be hard for you to imagine my reaction to a positive pregnancy test 7 months later. To put it mildly, I felt completely overwhelmed with the idea of having another baby. I didn't even know about her heart at the time, and I was questioning my ability to juggle life with another little one. A few months later, after I had finally adjusted to the reality of another child, we were told the devastating news that she had very serious heart defects. While the Spirit had previously testified to me that this new baby would be a blessing in our lives, that day, I knew for sure that she was no accident and her broken heart was not just a sad coincidence. She was meant for our family. She had a mission that was unique and specific to those that would come to know and love her. I was blessed to know that her imperfect body would serve to soften hearts and bless lives. A while back, I mentioned a Saturday morning when I set two goals for myself. I wrote about the first goal and said I would share the other one another time. The second goal I set that morning was to help Annie fulfill her mission. I decided then that I would do everything in my power to help her life be a blessing to others. I would not let my own sadness and grief stand in her way. I started her blog with this goal in mind. I knew that I would have so many experiences with her that would bless me, but I wanted to share her life with anyone that wanted to be a part of it. Annie doesn’t have a voice right now- she can’t even make a sound because she is on a ventilator. This blog is my tribute to her and all that she is teaching me, even in her silence. This road with her has, at times, been almost unbearable, as I have watched her suffer through so much. But, it has also been a sacred and sweet chapter in my life. Annie is amazing. I feel so privileged to be her mom. I hope this blog helps you feel her strong and valiant spirit. Knowing that she struggles so we can benefit and grow sometimes seems unfair. I worry about the days when my ten and fifteen and twenty-five year old Annie cries because she is afraid to have, yet another, open heart surgery or is frustrated and sad because of limitations inflicted on her because of her defective heart and airways. Will she know what a gift her life has been to others? Will she know how many people love her and have prayed for her and have fasted for her? Will she know how many lives she has touched with her journey? Of course, Cameron and I will tell her about the amazing outpouring of support we have received. We have been deeply touched by the love you have shown to us and our sweet Annie. I feel like she belongs to all of us, and I am just the lucky one that gets to be her mom. I want our extended families to know how blessed we feel to have you in our lives. I want our ward to know that you have become our family through this. I want our friends to know the same. To anyone who reads this blog, whether you know us personally or not, your love and prayers for our Annie are so meaningful to us. To all of you I want to say thank you for loving us through this time. Your comments on this blog, your cards, letters and emails, your phone calls, your prayers, love and endless service to our family has helped us to never feel alone in this. You have lifted our spirits and been angels in our lives. We know so many people are praying for and loving our daughter. I want to preserve this outpouring of love for her to experience when she is older and am asking for your help to give this gift to Annie. If you read this blog, then I know you care about her. I want to make a special book for her that she can pull out on the hard days ahead and feel what I feel all the time right now- wrapped in your love. Just write Annie a note- it can be anything: a time when you have prayed for her, that you love her, or have been touched in any way by her life. It doesn’t need to be long- a single sentence will even do. Even if you have never met her or our family, please don’t hesitate to send me a line, as I am touched that you are keeping tabs on her. It has been humbling to hear of the children and youth that are praying for Annie and I would love to hear from you as well. I know that she will be blessed and strengthened to know how many people love and care about her. This is the best way I can think of to thank this beautiful girl for the spirit that she shares with everyone. You can post your note here in the comments section or email it to me at cameronsabin@hotmail.com. Just begin it with “Dear Annie” as this is what I intend to title the book. Thank you for your love- it has blessed us more than you will ever know.

Butterflies

I woke up this morning with butterflies in my stomach and a prayer in my heart that today we would get the miracle Annie needs. I have never prayed like I did today - every part of me aching for an answer, for resolution, for peace, for strength, for faith and hope, for courage, and for healing. Cameron and I exchanged very few words on the drive to the hospital. Both of us were struggling with the emotions of again sending Annie into surgery. When we arrived at the hospital it felt like the entire staff here was holding their collective breath right along with us. The only advantage of being here this long is that most everyone knows and loves Annie. So many of the nurses have told me that they are praying for her and some have put her name on the temple rolls. Even the surgeon that assisted on her operation told us this morning that he was praying for Annie as well. I love that these good people love her! We spent close to an hour with her this morning before the anesthesiologist came to take her to the operating room. How strange it was to repeat the long walk and the dreaded kiss goodbye. This time around was even more difficult than the last as we really knew that this was Annie's last shot at a surgical resolution to her complicated problem. I made sure that the surgeon knew how very many people were praying for him today - all of us desiring for his skilled hands to be guided in making the necessary changes to her anatomy to finally give her the relief that she so desperately needs. This time, instead of waiting in the regular surgical waiting room, we retreated to Annie's room in the CICU where we could be alone in the comfort of familiar surroundings. It was strange to be in her big empty room with no Annie. It felt so hollow without her there. While we were both nervous, we felt peace in knowing that we had done all we could to make the right decision for Annie. Now it was time to trust in God.

The first hour was spent prepping her for surgery and the next two hours were spent getting her on the bypass machine. This took much longer than last time because the scar tissue from the original surgery was still very fragile and required tedious and slow going to prevent too much bleeding. Once she was on the bypass machine, Dr. Burch removed the valved conduit that they placed last time as well as some of each branch pulmonary artery. He then installed the homograft, making sure to lengthen the arteries with it. He also dissected some of the tissue behind the aorta to give it room to "float" forward and off of her bronchus. At that point the ENT doctor came and performed a bronchoscopy to determine if the bronchus was still occluded. He determined that while it was 100 percent occluded before the surgery, now it was 50 percent occluded. A big improvement, but is it enough? At this point, we do not know the answer to this as only time will tell. Dr. Burch decided to leave her chest open in an effort to drain as much fluid as possible before closing it. Minimizing the pressure in her chest will lessen the chance of her bronchus collapsing when they do close it.

I would describe the feeling in Annie's room tonight as guarded hope. Immediately following the surgery there was noticeable improvement in her ability to breathe. When I walked into her room and heard the doctors discussing how happy they were to see both sides of her chest moving with each breath and I saw numbers on her ventilator lower than I have ever seen previously, I had to choke back the tears. It is way too soon to know if the surgeon has succeeded in his efforts to relieve the pressure on the bronchus and if it will be strong enough to remain open, but it has been so long since I have heard anything optimistic about Annie that any good news makes me emotional. The coming days will be telling, but tonight she is breathing easier than she has in weeks. The peaceful rise and fall of her chest fills my eyes with tears and my heart with gratitude.

Patience

This last weekend was spent running tests and scans in an effort to acquire as much information as possible to help the doctors come up with the best possible solution for Annie's predicament. The good news is that they believe that her left lung is viable and can be saved if the airway to it can be restored. After many days of deliberation, today in conference, a consensus was reached and Annie's second open heart surgery has been scheduled for tomorrow morning. While I am far from thrilled with the idea of another surgery, I have accepted that Annie does need it and it really is our only option at this point in time. She has been declining steadily for nearly a week now and the surgeon feels that the only way she will get better is if they can somehow relieve the pressure on her bronchus and normalize the pressures in her left lung. After much discussion, the doctors have let us know what procedure they feel will give her the best chance at regaining this airway. None of the options discussed are perfect and all of them have consequences that could present complications in the future. The decision has been made to replace her entire main pulmonary artery and left and right branches with a 'T' shaped homograft, allowing them to lengthen the branch pulmonary arteries. The thought is, that with this extra slack in the pulmonary arteries, the aorta, with its much higher pressure, will be able to successfully hold them off of the bronchus. Of course, there are negatives to this procedure, even if it works. First, there will likely not be room to leave the valve conduit that they put in during her previous surgery and the doctor will instead sew a flap into the homograft to help reduce the high volume back and forth flow. The valve that they placed last month is already leaking significantly so they don't believe that this will make a great difference in the immediate future. However, there is some concern that the homograft will make it difficult for them to place a valve later in life. The hope is that, as she grows, there will be room for both a homograft and a valved conduit. The other negative to this procedure is that, just as a valve does not grow with a patient and has to be replaced in time, this homograft will not grow with Annie and will need to be replaced several times during her life. The homograft will mean that her future surgeries will be a bit more complicated and invasive than they otherwise would have been. It is hard not to worry about what our decisions today will mean for Annie down the road, but the surgeon told us yesterday that we are at a point with Annie where we need to make the decision that will help her the most now, as otherwise, there will be no need for future decisions. A sobering thought and good advice. While we know that this is essentially uncharted territory for the doctors, we remain hopeful for a successful outcome.

This morning, I was given a copy of a talk from General Conference by my friend, Annette, who works here in the PICU/CICU. The talk was given by Dieter F. Uchtdorf in the last Priesthood session and is titled, "Continue in Patience." Her timing in giving this to me was perfect as I have been so frustrated with the length of Annie's hospital stay and have felt even more discouraged now that we are basically starting over again. Waiting has never been one of my strengths. Beginning on the day we found out about Annie's heart, I have struggled with the waiting all along the way. Some days I think the waiting might just be the hardest part. Even successful surgery tomorrow will not bring a final resolution as we will always be looking ahead and waiting for her next surgery and challenge. In my frustration, I keep wondering what is to be learned in all of this waiting. What good could possibly come from Annie's continued struggle that goes on and on and on? In this article, I received my answer. The lesson learned in the waiting can be patience.

In his talk, President Uchtdorf said, "Patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can- working, hoping and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring, it is enduring well! Patience means accepting that which cannot be changed and facing it with courage, grace and faith. Patience means to abide in faith , knowing that sometimes it is in the waiting rather than in the receiving that we grow the most." He then said that "Often the deep valleys of our present will be understood only by looking back on them from the mountains of our future experience. Often we can't see the Lord's hand in our lives until long after trials have passed. Often the most difficult times of our lives are essential building blocks that form the foundation of our character and pave the way to future opportunity, understanding and happiness."

The waiting is always going to be hard for me, but today I have a new appreciation for the blessings born of patience.

In His Hands

This week has brought us to a new low with Annie. Before the week even began, I felt like I was close to reaching my limit. The daily trips to the hospital combined with the chronic worry I feel for Annie have brought on a fatigue like I have never known. However, it feels like every time I say that I can't do something, that something happens, and I am blessed with the strength to get through it. Maybe part of the lesson in this is that we really don't know our own limits and would all be surprised to find out that we are more capable than we ever thought possible. I pray that this is the case as we are as far as we have ever been from reaching a resolution for Annie. So much for deciding what I am capable of, as there is no opting out of this growing experience!

Monday, after they successfully replaced Annie's pic line, they took her downstairs to radiology to examine her diaphragm function and determine if the phrenic nerve had been damaged. The results of the test showed that her diaphragm was not paralyzed. At first, I thought this was great news, but it turns out that the doctors were actually disappointed by this because they would at least know what to do for her if this was the problem. They were hoping that, if needed, a plication (tacking down) of the diaphragm would help her make more rapid progress in being weaned from the ventilator. Even with this news, they were still optimistic about the progress that she was making and were even talking about the possibility of attempting extubation this weekend. Wednesday, they decided to put a chest tube back in as she had accumulated a fair amount of fluid around her left lung. Later that evening, she started having arrhythmias again and began to show signs of respiratory distress even though the ventilator was still providing her with a fair amount of support. This continued until Friday morning when they decided to do an MRI to see if her airways were still compressed or obstructed. The results of this test were not good. The bottom line is that all that was done surgically to relieve the compression on her bronchus has not worked. The aggressive surgical procedures have only changed the location of the most severe obstruction. She is trapping air in her left lung and, at this point, is essentially in the same situation she was prior to surgery. Making her problem worse, is that no one knows what can and should be done to help her. The doctors are putting all of their heads together to come up with a solution, but there is no doubt that the proposal they come up with will likely be experimental and somewhat of a shot in the dark as they have all let me know that Annie presents a very complex case for them. At this point they are trying to determine if the left lung is still viable as there is a possibility that it is too damaged to save. No one wants to do another open heart surgery to try and preserve an airway to a lung that is beyond repair. The next several days they will be working to determine what options they can offer for Annie. They will then be looking to Cameron and me to approve whatever creative idea they come up with. How's that for pressure? No matter what, we are likely looking at more surgery in the coming days. I can hardly bear the thought of putting her through this when she still has not fully recovered from the original surgery five weeks ago.

It is extremely difficult to do this day in and day out with no end in sight. Annie will be two months old tomorrow and she is still in intensive care. We want desperately for her to get well and come home. We want to see her smile and hear her cry. We want her suffering to end and for her to know happiness. Some days I feel like I am suffocating from stress and worry for my baby girl. This experience is teaching me what it really feels like to submit my will to His. I have been surprised at the freedom that comes when I am able to let go and turn it over to Him. I have known all along that this is in His hands, but I know it more with each passing day. I am completely helpless to fix her heart or help her breathe. Even the surgeon told us yesterday that while they are doing their best to find a solution for Annie, how this all turns out will be up to God. I am grateful that we all agree on this.

Hope

The marathon continues! This past week, Annie's progress has seemed, at times, almost immeasurable. Only in looking back at where she was a week ago can I really see that she is progressing. The most noticeable difference is that she no longer has any chest tubes as they removed the final two this week. Early in the week, the doctors decided to start her on a beta blocker for her arrhythmias. It has worked very well and since then, she has not had any more irregular heart beats. On Wednesday afternoon, Annie spiked a fever, and with a push from Cameron and me, they started her on antibiotics that night. The next day, her urine and several blood samples came back positive for infection. Although she didn't seem like she felt well, she thankfully, never got extremely ill from this infection. However, they had to pull her pic IV line because of the infection and have been unable to replace it now that the infection has subsided. This means that she is getting poked with needles all the time now as they try to administer her meds through peripheral IVs and draw blood from heel sticks. All this poking makes both Annie and me miserable. Her progress on the ventilator has been very gradual. They have been making minor downward adjustments on the support she is receiving and will continue with this until she hopefully reaches a level that could qualify her for extubation. There is concern that her phrenic nerve was damaged during her surgery, meaning that her diaphragm on the left side may be paralyzed. In the next day or two, they plan to run some tests to determine if this is the case. If it is, then she will likely have another surgery this week in which the diaphragm will be tacked down so as not to interfere with her lung expanding. This should not be a major setback, but is yet another obstacle for Annie to overcome.

I recently joked with Cameron that I am concerned about my social life as most of it now takes place in the CICU. The fact that I know all of the nurses, therapists, fellows and doctors so well has to mean that we have been here WAY too long! I have been lucky enough to meet and get to know some of the other families here as well. Every Thursday, the hospital hosts a parent hour and serves lunch to all those that have children in the PICU and CICU. In the beginning, I rarely went and usually only because the nurses gave me a hard time if I didn't. However, as time has passed, I have started going because I want to go. It is a chance to meet some of the other families and hear their stories. It is a chance to look outside of my own situation and see that others are suffering too. Everyone in that room is carrying a burden. From one family to another, the burden has a different name, a different course and a different prognosis, but the impact it is having on our lives is surprisingly similar. We all know way more than we ever hoped to know about whatever condition our child has. Everyone uses words that would not even be in our vocabulary were it not for our children. Sometimes the mood is light and social, and other times it is heartbreaking as feelings and thoughts are shared. Even though we are all such different people, we are bound together by this common denominator: each one of us has a sick child and each one of us is hoping that our child is going to get better and go home. For some, this hope is more realistic than for others, but we are all hoping, just the same. Any one of us would love for our child to be suddenly and miraculously healed, but I think most of us are seeking to find hope in a more likely outcome. My favorite doctors are those that give me accurate information and honest opinions regarding Annie (even if the news is not good), but still look for opportunities to be optimistic and hopeful. It feels like I am always walking a fine line between hoping for the best and preparing for the worst.

I have come to know that hope is essential for spiritual well-being. I am sure that this is why hope is mentioned so often in the scriptures and is even described as an "anchor" to our souls. I am still hopeful that Annie will come home and live a long and relatively healthy life. But I know that ultimately my greatest hope for her is in the promise of an eternity with a perfect heart and flawless airways. Come what may, this hope truly is an anchor to my soul.