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.