Wednesday, October 3, 2012

Titanium head

We had an interesting weekend, to say the least. 

Last Thursday

Grace had another MRI to take a look at the bump over her head that kept fluctuating in size. She had a follow up appointment with the neurosurgeon the next morning. The results were not what we expected. She had a large pocket of CSF (brain fluid) that was outside, but it was definitely communicating with another pocket of fluid on the inside causing enough pressure that it was pushing against the left side of her brain. If this went on long enough, eventually her left hemisphere would've slowly atrophied. We did notice some subtle changes with her- she wouldn't eat as enthusiastically as before, and sometimes she would be tremulous when she sat for a long time, like she couldn't hold herself up as well. She seemed to startle a lot easier. One time Aaron made a loud, funny sound to entertain her. Instead, she startled in fear, shook uncontrollably and started crying. We didn't know what that was all about. Yes, daddy is scary looking, but he never scared her THAT much.

During the neurosurgery appointment, it was pretty much concluded that she needed another surgery. When? Well our awesome neurosurgeon was ready to drop everything that morning and take her to surgery immediately. He was leaving for the weekend, and didn't want anything to happen while he was away. It was one of those moments where we felt so blessed to be at the Mayo Clinic. I don't think this process could've been expedited any sooner anywhere else. The needs of the patient truly come first. Within hours, she was in the operating room.

What they found in the OR was strange. She had a bone skull fragment that was sunken in and partially resorbing due to the external pressure of the swelling. In addition, there was a large tear in the dura (outer membrane of the brain) that was about the size of a quarter and the source of her CSF leak. They were able to repair the leak and placed a subdural-peritoneal drain to help remove some more of the fluid in the long term setting. They took out the degraded bone fragment and replaced with 5 small plates of titanium. Our hopes are that as her skull heals and grows, it will grow over the titanium plates and eventually everything will just scar over.

Emergence delirium

Praise God the surgery itself went well. The nightmare came afterwards. 
When she woke up from the anesthesia, the poor thing was terrified. She didn't recognize us. In fact, every time we tried to pick her up to comfort her, she would start trembling VIOLENTLY and scream out in horror. I have never heard her scream like that before. It was a scream of pure pain and fear. It was the type of scream I would imagine if someone was getting their limbs chopped off. I held her in my arms and cradled her. Aaron and I sang to her, prayed..prayed and prayed for it to go away. She continued to tremble and scream. One time she shook so hard she convulsed for about 5 seconds and looked like a seizure. She did this over and over for about 3 hours until she finally calmed down in the ICU after repeated doses of sedatives. I don't know how I held it together during that time, but I had to do my best to stay rock solid and not break down. 

They call this phenomenon "Emergence delirium", which is commonly seen after someone awakes from anesthesia. I hope I will never have to witness this again. Her screams have been permanently lodged in my memory and it's a sound I will never forget.

The next few days continued to be challenging as she battled the discomfort of continuous high grade fevers. She was still scared of everything- every new face and sound, everytime someone tried to move her or hold her, it really upset her. This hospitalization was so different from the previous. When she was younger, she didn't know better, but now that she's older and is able to feel emotions of fear/anxiety, this experience was much more traumatizing for her and for us. Blood draws were almost impossible, and we still don't know if these fevers are related to an infection. The medical team had assumed that it is more centrally related, because if this was truly an infection, she would be a lot more ill.

Coming home

Over the next few days, she did better and we were able to take her home yesterday. Grandma prepared a nice bouquet of flowers to welcome her home. She still has some fevers here and there, but they're not nearly as uncomfortable for her. The swelling over her head has definitely shrunken in size, and she's a much happier camper nowadays :)

God's Grace

The strange thing is, when all this happened again, Aaron and I looked at each other and understood what we had to do. We were prepared for whatever was going to happen. We went through 6 weeks of this before, so as soon as we got to the hospital room on the first day, we knew our roles like the back of our hand. The hospital was familiar to us, and was like our second home. It was like our surrounding church community, friends, family all knew what to do too. Everyone started praying for Grace and spreading the word without hesitation or second thought. In many ways, this hospital stay was harder for our family than the previous, but God had prepared us. Every situation prepares us for the next. Though in heat of the moment, things may seem scary and out of control, but we have learned not to fear or be anxious, because God will never forsake you.

Each step of the way, Grace has gotten a little bit better. This is just another part of her journey. Thank you, everyone for being a part of her journey. She is one of the luckiest girls in the world to be loved by all of you.


  1. What a lucky little girl to be blessed with such strong, faithful, Godly parents. Your strength through all of this amazes me and reading each entry to her journal brings tears to my eyes, thinking of how hard this is for you guys to witness. You can definitely see why God chose you to be her parents. I"ll continue to pray for all of you.

  2. What a beautiful little girl that you have; her smiles are so precious and a gift. And she is surrounded by love; you can tell that she is such a loved child. You have so much strength to go through this. Sending you so, so much love and prayers for both your little girl and her momma. Pappa too.


  3. What a blessing! She is so precious, just looking at her pictures tugged at my heart strings. As a mom of 2 kids myself, one who has had medical scares in the past, I know how stressful it is, and during those times, the support and kind words are the extra bit of fuel you need to have faith. Looks like the darkest days are over, and recovery is in the future! XOXO to you & your family!
    -Daisy Nguyen from PS BANANAS fashion blog:

  4. Your daughter is so beautiful! This story made me tear up a bit and hope for the very best for her. Much love to you and your family!

    xo - Sheila

  5. oh my gosh~ i can't believe all that grace has gone through, she really is such a little fighter and you guys are AMAZING parents!!
    Sandy a la Mode

  6. we hope and pray that ths is the end of all misery and you guys and Grace have a beautiful and healthy life ahead. Much love, hugs and prayers to your precious family.

  7. Oh my goodness, I started reading this post not really know what to expect since I'm still a little new to your lovely blog but I couldn't stop reading. How can such a tiny human being have gone through so much already! The way you described her screams post surgery was so vivid that I was sure I heard them in my own head. Having two little girls of my own I know how heartbreaking it is whenever they are unwell. But the amount of trauma little Grace has gone through already is a world onto its own. My two year old has had failure to thrive since she was 4 months old and after months of testing and doctors visits she is now permanently scarred. I cannot take her anywhere near a doctor without her crying in fear. I remember all the blood drawls we had to go though, so I can only imagine how difficult getting blood from Grace must have been, especially with the state she was in. Sorry, about my extended comment. Your post was just so touching. I hope she will never have to go through anything like that again. Continue to be the amazing parents that you are.

    xx Jenee C.
    {camo meets couture}


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