Zoe Grace: Time.

Yesterday I arrived at the hospital around 10am feeling refreshed and optimistic.  When I first stepped into Zoe's room, I noticed she was in the middle of an EEG and also Dr. Metrick was doing a neurological evaluation.  With no tone of compassion, she said something along the lines of "I'm Dr. Metrick and I am doing an evaluation on Zoe.  The EEG is showing that there is no processing going on in her brain and the brain waves that are there are very slow.  She is in a coma and it may take weeks, months or never until she wakes up.  Only time will tell."  She then said something to the EEG tech and quickly left the room.  I was floored.  What just happened?  I then looked down at my sweet little girl and her eyes slightly open, glossy and with no response to my presence.  I broke down.  Immediately I needed to call my husband.  I looked at the clock and in about 10 minutes he would be starting his Physics midterm.  The timing could not have been worse.  I knew that if I called or text him about the news, he wouldn't be able to make it through the test.  So instead I called my dad... bawling and barely able to speak.  I regurgitated what I had just been told, he said he would cancel the rest of his patients and be right there.  I also called my mom and she was immediately on her way with my sister Jenelle and my brother-in-law Todd.  At the time, I didn't know if I wanted them all there because all I wanted was Andrew.  But their presence made all the difference until I was finally able to talk to him two hours later.

Once I finally was able to talk to Andrew, I think it hit him like a ton of bricks.  He still had a two hour Physics lecture to get through before he could even make it up to the hospital.  Luckily he arrived in time for us to talk to Dr. Legras (the cardiologist on call for the day).  Even though we weren't able to talk to Dr. King, we were really looking forward to hearing from one of his partners.  Unfortunately, I felt even more lost and confused after speaking with him.  He was all over the board with every possible outcome.

Feeling beat up after Dr. Legras left, we were visited by Dr. Colson shortly thereafter.  Dr. Colson is a Pedatric Gastroenterologist and happened to recently move into our ward.  Although we have only seen him a few times, his visit could not have been at a better time.  Just talking with him about everything really broke us away from the doom and gloom conversation we had just had and turned everything around to a more positive feeling.

My dad's office was so thoughtful and sent us a huge platter of sandwiches, a green salad, fruit salad, chips and even a platter of cookies.  The timing couldn't have been more perfect because almost all of the adults in my family came to support us in the evening and we were able to eat together in the waiting room.  It was nice to be with family, get out of the ICU for a bit and of course, comic relief.

We decided to pick Lulu up from my brother's house and take her home with us for the night.  The best possible medicine was snuggling and laughing with her in our bed.  We looked at pictures and videos of her and Zoe on our phones.

This morning started out early at 6:30am when our nurse called (per my request) to let me know what Dr. King said after his morning evaluation.  The echo showed that her heart function has improved with the Milrinone.  Other than that, he said that we just need to wait and see.  I fell back asleep and we all slept in until about 10am.
Within minutes of seeing Zoe today, even though her eyes were glossy and not really looking at anything, she was opening and closing them when I talked to her... her hands and feet were trembling and occasionally she would slightly move her right hand and arm.  I was feeling so encouraged and positive.

Bishop Jaussi came by to check in on us and little Zoe.  It was so nice to see a familiar face outside of the hospital world.  He will be back tomorrow to give baby Zoe a blessing.

Later this evening, Dr. King came in at 5pm to talk to me.  He felt that Zoe's condition had not improved and that the slight movements she is making could easily be reflexes and might possibly be the extent of what she will ever do.  He wants to do another EEG on Monday and if the results are the same or worse than the one done yesterday, we will need to start discussing our options.  If she does not progress neurologically, they will not proceed with the heart surgery that she needs to survive because this specific procedure can cause more pressure in her already injured brain, which would then worsen.  If they are not able to do surgery, the question is when and if they should take her off the ventilator and what to do if she cannot breathe independently without it.  If they take her off the ventilator to let her brain injury heal more over time, she would need a transplant.  Because if her neurological state, she would not qualify for a transplant.  I broke down feeling like I had just been punched in the gut over and over again.  At this point I was feeling helpless and hopeless.

 I'm not sure how to even put all of my deepest fears and feelings into words right now.  I am feeling so beaten down.  I don't feel like it is her time.  I don't feel like her journey is over.  I just want to look into her pretty brown eyes and see her again and hold her again.

Zoe has already proven time and time again that miracles are real and that she is capable of so much more than we know.  Only time will tell what God has in store for our little miracle.



Stefanie Michelle said...

Kacie, my heart aches more than you'll ever know for you, Zoe and your family. You are so incredibly strong; I think a lot of us would've broken down much sooner. I don't know how you do it. How blessed you are to have all if these people on your side, pulling for Zoe and for all of the prayers. We know God will do for Zoe what He thinks is best. She is a miracle already... Know that whatever the outcome, you did all you possibly could for her - Zoe knows that and she would want you to know that. Take care of you during this difficult time and let me know if there's anything I can do; anything at all.

Sylvia Naef said...

My sincerest prayers and thoughts are with you, Andrew , and your precious girls. You are the strongest mom I know I wish I could give you a hug right now. Zoe has made it this far and like you said she has proven over and over miricles are real. Please let me know if there's anything Colton or I could do.