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.