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.