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.

Always In The Details

Here with Annie today, I am filled with gratitude for her life and for her amazing spirit that I feel every time I am with her. I would never have signed up for this journey, but somehow, I feel blessed to be a part of it. Her heart is finally beating on its' own (no pacer) and she is maintaining a reasonable rate and mostly regular rhythm. Her blood pressure has also improved and is generally stable. For the first time since Monday, it feels like everyone is starting to exhale just a bit. Nobody wants to get too excited, but Annie is finally starting to make some progress! Over the last few days, Annie has become somewhat of a celebrity in the CICU. Everyone knows who she is and many stop by to see how she is doing during the day. Even though she is a difficult patient, I often have nurses express disappointment if they are not assigned to her. She is one loved girl.

A while back, Cameron and I were sitting in the hammock in our backyard, remembering some of the difficult times in our marriage: the early years when we were always worried about money; the stress we felt when Cameron was preparing for and taking the LSAT; the agonizing decision of where to go to law school and whether or not to do a clerkship; the choice we had to make of where he would work and where we would live. On paper, these would be listed as some of the hard things we have gone through, and yet, really, they were some of our sweetest experiences. During these times, we were so dependent on our Heavenly Father to help us. We learned to really trust Him and were able to see His hand in our lives all along the way, especially looking back. I remember as we talked about these memories, telling Cameron that as much as I would not ask for or hope to have hard times, part of me missed that feeling of really needing Him, of completely relying on Him, of trusting Him enough to take a step into the dark knowing that He would be there with us every step of the way. In easier times, we still love Him and trust Him. We know He is there, but somehow it is not the same. Challenges give us a chance to experience all of these things on a more intimate level. Now, we have a daughter that is fighting for her life and we have never needed Him more. All of these earlier experiences were nothing in comparison to what we are facing now. But, the lessons we learned then have helped prepare us for this road with Annie now. We know He is with us, that we can trust Him to never leave us, and that His hand will always be in the details.

A Better Day

As I am sitting here tonight, Annie is more stable than she has been in 2 days. Thank goodness, because I feel confident that I could not have endured another day like yesterday. Late last night, we finally left the hospital after the nurses told us repeatedly how terrible we looked and promised they would call if anything changed. Between their 3:30 am phone call to us and our several phone calls to them during the night we did not get very much sleep. Throughout the night, she continued to have spikes in her heart rate at times, leaving everyone to wonder what was precipitating this. They increased her medication that slows the heart rate to nearly the maximum dose and worked to find the right level of sedation for her. By the time we arrived this morning, her heart rate was fluctuating between 115 and 130- lower than I have ever seen it. However, she seems to be very fragile and easily agitated right now. Even having a bandage changed can make her heart rate climb rather quickly. For this reason, the doctors have decided to hold off on the bronchoscope for now as they don't feel that she will tolerate it very well.

The goal since yesterday has been to get her heart back on the pacer, but until this morning, it has been racing too fast for them to "capture." Now the rate was lower, but they were still unable to pace it and believed that the wire was not working again. They were talking about the possibility of needing to go back in again to remedy this. Of course, I was not happy with the idea of another go-round inside her chest but knew that this might be the only solution to the problem. An hour later, one of the Dr. Burch's assistants came to try her hand with the pacer wires and was able to make it work- definitely an answer to my prayers. I was so relieved!

Throughout the day, her heart rate gradually increased. This would cause the nurses and doctors to turn the pacer up higher so that the rate of the pacer was faster than (and therefore not competing with) her own heart rate. By about 3:00 she had gone from being paced at 130 this morning to her own heart racing in the 160's. Finally, she settled down to being paced at 156 and for four hours has not raced above this at all. Her blood pressure has remained stable during this time as well. This is the best four hours Annie has had in the last two days. I just hope she continues to remain stable and we can work towards removing all of the extra fluid from her body and closing her chest soon.

This little girl is a fighter. I feel like we were very close to losing her yesterday, but her determined little spirit just would not quit. The doctors have told me repeatedly that they are very surprised at how well she has tolerated all of the drastic ups and downs in pressures and rates- much better than they would expect. I am sure that the sudden mass of prayers brought on by my text yesterday was noted in heaven. I can only imagine the army of angels that must have responded to the call. Certainly, those prayers were heard as Annie is with us still. I am so grateful for this.

How Much?

How much can her little heart take? How much can my heart take? These are the questions I kept asking myself today, by far the hardest day we have had so far with our Annie. This morning when I arrived in Annie's room, things seemed pretty much as they have all weekend. We have been waiting every day for her to make a move and show some progress. The first step that she needs to take is tolerating the diuretics they need to use to drain some of the fluid off of her very swollen body. Every time they try, her blood pressure drops letting them know that she is not ready.

Within an hour of my arrival this morning, her heart rate suddenly sky rocketed to above 230. The nurses called for help from the doctors and for the crash cart to be brought to her room. Her room was immediately filled with all kinds of people and equipment as they tried to figure out how to help her. After a few minutes, her heart rate started to come down some on its own, and the crowd in her room started to dissipate a bit. They decided to administer a drug that is intended to bring down the heart rate, but as soon as it hit her system, her blood pressure plummeted. At this point, they called for the crash cart again and requested that the paddles be ready if needed. I was standing against the wall, watching all of this happen and trying to not cry because I really didn't want to be escorted from the room. It felt as though every person that worked in the CICU was gathered around Annie's bed and clustered outside the door waiting to help. At one point, the charge nurse asked me if I was all right. I nodded my head yes, but immediately started to cry. If only she hadn't acknowledged me, I might have held it together. They administered epinephrine and lots of fluid and slowly her pressure inched up to a level that was still low but certainly more acceptable than where it had been.

While she made improvements initially, as the afternoon wore on, she again started to have spikes in her heart rate and dips in her blood pressure. It seemed that nothing that the doctors were administering was helping and eventually they did not seem to know what else to try. They would throw out ideas of what might help and then discuss it and decide why that would not work or would make things worse. I was actually getting sick to my stomach as I watched her continue to decline and listened to the doctors running out of options. At one point, one of the nurses mentioned that when she changed the bandage on Annie's chest, she noticed that it seemed to have some air trapped underneath. Some of them looked at it and felt that maybe they should have the surgeon come take a look. By this point, the feeling in the room was desperation and exhaustion as she had been declining for several hours with the alarms ringing incessantly to warn of her dangerously high heart rate and low blood pressure. Dr. Burch came to her room and within moments, he was requesting sterile instruments and drapes and they were preparing to go inside her chest again. We stood just outside her room and watched this doctor open her chest and hold her tiny beating heart in his hand. At that point, all I could think to do was ask for prayers, so I sent a text to those that are already programmed in my phone to "please pray for Annie now." For the next 20 minutes I watched (with my own heart in my throat) as the surgeon worked on her, pleading with Heavenly Father to help him help her. When he finished, her numbers were a bit better, but still not very good. He explained to us that he thinks she is still trapping air in her right lung and all of this pressure has caused a small part of her lung to rupture. This means that air is leaking into her chest cavity, putting even more pressure on her heart and probably increasing her heart rate. Today, he installed another tube into her chest to drain the air that is building up around her heart. He is very concerned that the fact that she is still trapping air means that she is still having obstruction of her airways on the right side. He said the procedure he did on Friday is the most drastic thing that can be done to relieve the pressure on the airways and he is not sure that anything else can be done surgically to remedy this problem. He hopes that as the extra fluid is drained from her body, and the swelling around her heart decreases, maybe the pressure on her airways will decrease as well and give her some relief. Tomorrow, they will scope her airways and see if they can find exactly where the obstruction is occurring and what, if any options we have. He told us before he left tonight that Annie is very sick and that her condition is "tenuous." Not very reassuring words. However, through the rest of the evening her heart rate has slowly crept down and things are starting to feel somewhat stable again. We will see what tomorrow brings. We could really use some good news. Thank you for your prayers- keep them coming as this little girl needs all the help she can get right now.

Be Still

Who knew that sitting in a rocking chair day in and day out could be so exhausting? The last couple of days have been stressful as we have watched all of these machines that are keeping Annie alive. We are trying to learn everything we can about the monitors, the numbers on the screens, and the various alarms meant to get the attention of the nurses and doctors caring for her. I am finding that it can make you crazy to focus too much on the numbers, because something is usually not quite where they would like it to be. It helps to talk with the doctors because they are focused on the big picture, not what the monitor says in any given moment.

Yesterday, Annie's heart was beating very fast and the wave form of each beat was not quite right. Because this is not uncommon, the surgeon will usually install 2 pacer wires on the heart during surgery that can be accessed later if needed. For some reason, the wire on her right atrium was not working and they decided that they needed to go back in and fix this. It took them about 2 hours to complete the procedure. Dr. Burch told us that while he was in there, he cut away some tissue surrounding the superior vena cava in hopes that this might relieve some of the pressure in this vein. He also said that they would take the catheter out of this vein very soon in order to avoid the risk of a blood clot. The catheter was removed later that afternoon.

At this point in time, Annie looks like the Michelin Man because she is so filled with fluid. We have been told that the first sign that she is "turning the corner" will be when they can start to drain some of this fluid off of her. So far, she seems to need the fluid to keep her pressures up and they don't feel she is ready to tolerate losing it. At times, she seems stable enough, but at other times she seems to struggle with one thing or another while they work to figure out just what she needs. During the night, she started to breathe more on her own, working with the ventilator. She still showed signs of needing to work to breathe, which is a little concerning to the doctors (and VERY concerning to me). They said it is too soon to say if this is a sign of things to come, but there is a chance that even after all of this, she will still struggle to breathe some until she gets older and her airways get stronger. This would likely be because her airways are soft and may be malformed because of the pressure they have endured until this point in time. After all she has been through, I was filled with worry and dread to think that she still might not get relief in her breathing.

A few minutes after talking with the doctor about this, we went upstairs to attend the half-hour Sacrament meeting that they hold at PCMC every Sunday. It was clear that we were not the only ones suffering from worry and fear for a sick child. When the speaker finished, we opened our hymn books to sing the closing song. As soon as I looked at the title, tears started to fill my eyes: Be Still My Soul. We found out about Annie's heart on December 30th and that night Bishop Brandt gave me a blessing. Of all the things that he blessed me with, one thing that really stood out and has stayed with me ever since was when he told me to "be still," to set aside my fears and trust in my Heavenly Father's will for me and this unborn baby girl. His words that night helped ease my fears and today as I was again feeling fearful for Annie's future the words were there again:


1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.

2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

3. Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

Neither Cameron or I made it through the hymn. The words hit so close to home for both of us and were just what we needed to hear. Another tender mercy.