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.

Seeking A Miracle

Today has been a good day for Annie. She is still having some arrhythmias, but in general, they seem to be decreasing in frequency and rate. Her chest tubes are draining very little fluid and will probably come out in the next day or two. Everyone now seems to be focused on the ventilator. Annie is very weak from all that she has been through and requires a lot of support from this machine to breathe. This, combined with her anatomy and the possibility of continued airway obstruction, makes coming off of the ventilator a big hurdle for her. The doctors think it will probably take a few weeks for her to condition and build strength before they will be able to attempt to extubate her. They have told me that the day she is extubated will likely be very stressful and if she doesn't do well, they will have to re-intubate her. They would then give her more time to build strength and eventually, let her try again. They plan to be patient and give her as many tries as she needs, but there is a possibility that she will just not be able to do it. If she is unable to be successfully extubated, they will do a tracheotomy and we will bring her home on a ventilator. She would likely be able to come off the ventilator at some point (probably a year or two) as she grows and gets stronger.

I know that we have been granted so many miracles with Annie already: she took that first breath and even cried when she was born; we were able to hold and love and rock her for three-and-a-half-weeks before she had her surgery; we brought her home and for two days our entire family was blessed to be together; even her very life was spared when medical means to save her were all but exhausted. Our sweet Annie is a living, breathing testament of the power of prayer and faith, when aligned with God's will. She is alive, and every day I give thanks for that miracle. I feel so humbled and grateful for all that have exercised faith in Annie's behalf. Cameron and I cannot help but get emotional when we talk about the love and prayers that have carried us through this most difficult time. I believe that all of you have helped bring these miracles to Annie and our family. We will never be able to say thank-you enough, so please know that our hearts are filled to overflowing with gratitude for your part in her journey. Is it too much to ask for another miracle? I hope not.

Now that the focus is on helping Annie to come off of the ventilator, I find myself feeling anxious anticipation. Not because I don't trust in God's will for my daughter, but because, as her mom, I can't help but want every good blessing for her. Back in January, when I was reading about and researching her condition, I learned that coming home on a ventilator was a possibility. While this is certainly not the most important detail in her story, it has always mattered a great deal to me. Every wish of my heart is for her to be able to breathe, and eat, and grow, and play, and do all the things that babies do; and to do these things without being tethered to a ventilator. I have a friend that often asks me about the details of Annie's progress and our most current concerns for her so that she can pray specifically about these things (love you, Emily!). I am always impressed with this and love that she knows that Heavenly Father is interested in all the happenings along the way- not just the final results. With this in mind, I would ask you to please pray specifically for Annie to grow strong enough in the coming days and weeks to be successful in coming off of the ventilator. I know that Heavenly Father will not ignore these prayers offered in her behalf, and if this desire for Annie is compatible with His will, it is certainly within His power to grant this additional miracle. Having said that, I also know that coming home on a ventilator may ultimately be a necessary part of her recovery. If this is the case, then I trust that He, who knows best, will still bless Annie and our family in answer to these many prayers.

Be Strong

Just when I thought I could breathe again! I was so looking forward to blogging good news this week, so I will start with that. On Monday morning when I arrived, I was told that the doctors had just removed Annie's atrial lines. I was excited about this and asked the nurse how many more days she thought it would be until they removed her final two chest tubes and I could hold her again. She surprised me when she said, "You know, I think we might be able to work it out and let you hold her today." With permission from the doctors, she pinned the chest tubes securely to Annie's blanket and with the help of the respiratory therapist, very carefully placed her on a pillow on my lap. While it was a bit awkward, trying to manage all the tubes, lines and the ventilator, I was so happy! For four hours, I did not move as I did not want her placed back in her crib until they really needed her there. It felt like a huge milestone and was something I had been looking forward to for two-and-a-half very long weeks. Cameron was able to hold her Monday night as well. Tuesday was better than Monday, as this time I felt more comfortable with all the extra things that accompany her into my arms. Wednesday morning, was even better still. However, Wednesday afternoon, her condition became more complicated again.

Before Annie had surgery, I was worried about so many things: How long will she be in the hospital? Will the surgery give her relief in her breathing? Will she be able to come off of the ventilator? If she can't, then what? Will I be able to manage all of her needs at home? How long until her next surgery? What will her quality of life be? How scary will a common cold be for her? Will she still be at risk for "episodes" like the ones she had before surgery?.......on and on and on. The Monday following surgery, all of these concerns were put on the shelf. The only thing I was worried about that day, and for the entire next week, was keeping her alive. Although things began to improve last week, it wasn't until this week that I started worrying about all these details again. It occurred to me that this was a good thing as it meant that I was no longer fearing constantly for her life. As I rocked her yesterday morning, I felt grateful for how far she had come, and the progress that she was finally making. Shortly after 2:00 in the afternoon, while I was still holding her, her heart rate suddenly soared to above 230 beats per minute. The nurse very quickly removed her from my arms, placed her in her crib and called for help. The doctors immediately came to her room and again the crash cart was delivered to her door. All I could think was, "not again!" "I cannot do this again!" Thankfully she only stayed above 200 for about a minute and returned to a more stable heart rate without intervention. For more than half-an-hour, she continued to spike every 5 minutes or so, always resolving on her own. The doctors decided that maybe her picc line was too deep and was aggravating her heart. The IV team was called to pull the line back and she was also given a strong sedative to help her relax. By 3:00 she was no longer having these spikes and at 5:30, I left for home, hopeful that all was well again. Just as I was pulling into my neighborhood, Annie's nurse called to let me know that she was doing it again. I was so discouraged to hear this news. I met Cameron back at the hospital and she continued to have these spikes in her heart rate every 5 to 10 minutes until after 2 am. This morning, the doctors decided to increase one of her medications in hopes that it will resolve these issues with her heart. It will take two to three days for the increased dose to take full effect. We won't know until then if this will remedy the problem. So, again, we wait and watch and hope and pray (this is becoming the routine for Annie!). Today, she has made gradual improvements. Her heart rate is still higher than they would like it and she is still having lots of arrhythmias, but they are not as fast or as dangerous as the kind she was having all through the night. Hopefully this means that the medicine is slowly starting to work and will bring a resolution in the coming days.

Lately, when people ask me how I am feeling, I usually say "tired." I feel like I prepared myself for a sprint, but Annie's recovery is proving to be more of a marathon. I have watched so many families come and go in the CICU while we keep waiting for Annie to get better. Some days (like yesterday), it is hard not to get discouraged. But, I keep thinking about a scripture that I love. It is actually the theme scripture for the Young Men and Young Women this year. It is Joshua 1:9 and it says "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest." In January, when it was introduced as this year's theme scripture for the youth, I knew immediately that it would be my personal theme scripture this year as well. Whenever I am feeling worn out, worried, tired, discouraged or afraid, I think of this scripture and remember to "be strong and of a good courage," knowing that He is most definitely with us and will never leave us to do this alone. Of this, I am sure.

Never The Same

Annie is doing well. Thankfully, this week has not been nearly as exciting as the last. She is finally making progress- slower than I would like, but at least it's progress. Over the last few days, the doctors and nurses have removed two femoral lines, two chest tubes and her foley catheter. She is starting to be weaned from some of the many medications she is on and they are starting to feed her a very small amount of food again (currently, a half teaspoon an hour). She is VERY slowly starting to lose some of the extra fluid that is in her tissues. The main goals for the upcoming week (besides getting rid of more fluid) are: 1) to get her atrial lines out of her heart as they pose the biggest infection/ thrombosis risk; and 2) to begin to wean her from the ventilator. Once the lines are out of her heart and the last two chest tubes are removed, I will finally be able to hold her some (depending on how willing her nurse is to bend the rules). I can hardly wait! The more awake and alert she gets, the more anxious I get to hold her again. It is frustrating to only be able to rub her head or touch whichever foot or hand is not currently occupied with an IV and all of the accompanying gauze and tape. I can't help but feel like she is missing out on so much. By the time we bring her home again, she will no longer be a newborn. Babies are supposed to spend the first few months of life wrapped up snug, sleeping, eating, and growing. Annie is unable to do any of these things (except sleep when she has enough pain medicine on board) and is instead recovering from major open heart surgery. I feel so sorry for all that she is going through and just hope that we can make up for the lost time as she heals.

As some of the bandages have come off of Annie's chest this week, I have been able to get a really good look at the incision running down her mid-line and the sutures holding it together, as well as the several small holes in her chest where central lines and drainage tubes have been placed. Just two weeks ago, she had that beautiful flawless skin that all babies come with. You would never have guessed by looking at her that she had such serious problems with her heart. She now has these scars that she will carry with her for the rest of her life. I know it's trivial when looking at the big picture, but a part of me feels sadness, even for this. In this small way, she will never be the same again. Of course, I know that these scars are the result of her life being saved. Would I trade them for her perfect baby skin to be restored? Obviously, I would not. I am so grateful for the skill of the surgeon; grateful that something could be done to preserve the life of my baby daughter; grateful that I have her here with me now. It is so interesting to me that while I feel some sadness for her scars, I feel deep gratitude for them as well.

We found out that Annie had heart defects on a Wednesday morning. Friday night, I spent most of the night on the couch because I could not stop crying and I did not want Cameron to wake up. After a very long night and just a few hours of sleep, I woke up Saturday morning and really knew for the first time since receiving the news that I was never going to be the same again. I had to accept that this was going to be one of those experiences that would change me forever. I realized that morning, that while I could not choose how things would turn out for my baby, I did have some ability to choose how things would turn out for me. I could let this experience make me angry and bitter and spend the rest of my life feeling cheated, or I could exercise my faith and grow from the experience. I could let this be an opportunity for my testimony to be strengthened, or I could let it fade in the sadness I was feeling. I could focus on the terrible moments and choose to never see the sweet ones, or I could count my blessings, even on extremely difficult days. This was the first of two goals I made that morning (I will write about the other goal another day): to come through this with my faith, my optimism, my testimony and my trust in God intact; to not be bitter and angry, no matter the outcome. Obviously, this is a very long term goal as we will deal with Annie's heart defects for her entire life. I am finding that some days it is easier to do this than others. I know that, just like Annie, I will always carry some scars from this battle for her life. The bottom line is that neither one of us will ever be the same. I am praying, that even on sad and bitter days, we will always leave room for optimism, gratitude and growth.

Her Eyes

Overall, Annie is doing well. After the surgeon closed her chest on Sunday, she struggled some throughout the rest of the day. However, her chest is still closed and, since Monday, her blood pressure has been mostly ok. Her heart has maintained a normal rate and has had fewer arrhythmias over the last 24 hours. They are starting to wean her off of some of the medications she is on. Everyone's focus is still on getting rid of all that fluid. I don't think anyone would have guessed that 12 days post surgery, we would still be watiting for her to let the fluid go. This is so important as it will mean that the massive inflamatory response her body is having because of the surgery is finally subsiding. The hardest part of the last two days has been seeing her in pain. Her blood pressure does better when she is on less pain medicine. So, while they don't want her to hurt, they need to keep her blood pressure at an acceptable level. When she cries, she does not make any sound because she is on the ventilator, but her eyes and facial expressions say it all. Her silent cry hurts my heart and often times I cannot help but join her- thank goodness her room is well stocked with kleenex. When she is not in pain, I love to see her eyes. For many days following the surgery, they were so swollen that she couldn't open them at all. Seeing them now makes me feel like I have a little piece of her back. Not being able to hold her is even harder than I anticipated it would be. I am so looking forward to the day when I can wrap her in a blanket and rock her and have her close to me again. But, for now, at least I have her eyes. The doctor told me yesterday that she is way overdue for some good luck. She has had such a rough recovery- harder and longer than anyone anticipated. Before she was born, I prayed that she would be a fighter- strong enough to endure whatever would come. It hasn't taken her long to prove herself. We are indeed grateful for her fighting spirit (and those beautiful eyes).

Faith

Some days I hesitate to blog because I feel like I am taking everyone along on this crazy roller coaster ride with me. I tell myself to wait until things are more consistent, but so far that just is not happening! It feels like every day brings new challenges and the things we were worried about yesterday take a back seat to whatever is most pressing today. Just a recap of how the week went: Monday was excruciating. Tuesday was better (not great, but better). Wednesday was not as good as Tuesday and not as horrible as Monday. Thursday and Friday things seemed to be looking up as Annie's heart rate and blood pressure were finally consistently stable. Saturday morning, I called to check on Annie and the nurse told me she was doing well. By the time I arrived, this was no longer true. Her heart rate was high and creating the wrong electrical rhythm again. My heart sank as I tried to prepare myself for another long day. For hours I listened to her random rapid heart beat on the monitors and tried to mentally will her heart to slow down and regulate (which, by the way, does not work). After several hours, the nurse noticed a strange substance draining from one of the chest tubes. Within moments, they were taking a chest x-ray and realized that one of the lines that feeds directly into her heart had been dislodged and was dumping the meds and IV nutrition into her chest cavity instead of her heart where it belonged. This explained the strange drainage from her chest tube and hopefully the issues she was having with her heart. They removed the lines and placed two more peripheral IVs to administer her meds. Within an hour she seemed to be doing much better. However, she was STILL hanging on to the fluid and this series of events only caused her to need more. The doctors told me that they were feeling some urgency to get her chest closed because every day it remained open her risk of infection was rising. This morning (Sunday), they somehow managed to close her, but told me it was an extremely tight fit. Everyone is watching her very closely to see if she can tolerate all the extra pressure- the next 24 hours are critical. If she can't handle it, they may have to open her again (I pray not). So, again we are fixated on the monitors and all of those numbers that can drive you crazy!

In her short time with us, Annie is already teaching me so much. Between driving back and forth to the hospital and sitting with her for many hours each day, I have a lot of time to think about what I am learning. Faith has been a frequent topic of conversation between Cameron and I over the last few years. Now that we have Annie, it has been on my mind even more. Faith is one of the first gospel principles that we teach our children. Such a basic principle, but is it really? What does it mean when we say we have faith, especially in the context of trials? We read in the scriptures that faith can move mountains, so can it remove our trials? If we are dealing with a hardship and things don't turn out as we hoped they would, can we assume that things would have been different if only we had exhibited more faith? If Annie comes through all of this, does that mean that I have any more faith than the family next door who might lose their fight? Of course not. Some of the most amazing people I know have been dealt some of the hardest trials imaginable. I have been a witness to their pure faith in a loving Heavenly Father and in His Son, and yet, their trials stay put. Even more impressive, is that they often express even deeper devotion to and increased faith in these Supreme Beings when things don't turn out well. What makes the difference? I have to believe that it is knowing that faith is not about what we think we want, but about what God knows we can become. Faith is trusting in His will. Faith is looking for the little miracles all along the way. Faith is believing that blessings can actually be the fruit of extreme trials. We have a long road ahead with Annie, and I know I have much to learn, but I am grateful for others that have been examples to me of faith in the midst of fire. I'm thankful for the miracles and the blessings that have already come to our family through Annie and pray that I will have enough faith to recognize them all along the way.