Saturday, May 31, 2014

Results from Wednesday's CT Scan

Thank you all for your prayers Wednesday- they were absolutely tangible. Lily hadn't eaten in 13 hours and you would have never known...which is quite different from every other day! Really, the day couldn't have gone better behavior-wise with all the kids.

She slept through the CT scan and was sedated for the hearing test. After trying (and failing) twice before to get all the readings the audiologist would need for hearing aids, we wanted to make sure this would be the last try. Lily was just lightly sedated (she still wiggled a little and was waking up just as the test was finishing), so it was nothing to worry about. I wish they would tell you that beforehand- it would save me (Laura) unnecessary worrying. At any rate, the doctor got everything she needed and confirmed a lesser general loss in Lily's left ear and a greater specific loss in her right. The next step is getting hearing aids. I'm thinking bright pink!

Lily during the hearing test.

We then met with the pediatric neurosurgeon to discuss the CT results. We got to see the 3D scan of her skull and brain and received the news that the doctor doesn't recommend going forward with surgery, but rather waiting and watching. The bones are not yet fused together and so still have room to grow. The main problem is that her brain just isn't growing, which means that her skull isn't going to grow. She also has some fluid in the back behind her brain which the doctor didn't seem concerned about, and so we didn't ask any questions about it, but are now wondering about. After looking at the CT, the doctor also thought that Lily wouldn't be able to see, but when he saw her he could see that she was definitely alert and could see. We don't know what to think about the doctor thinking she wouldn't be able to see based on the CT, but we are pleased that Lily surprised him.

The neurosurgeon and plastic surgeon will be meeting on Monday to discuss Lily and see if they're on the same page about things. We have a NICU follow up on Tuesday and we'll be able to ask questions we've come up with since Wednesday.

Other than the exciting news of no surgery, the most wonderful thing that happened this week is Lily's first laugh! She had been making a little squeal sort of noise, but Tuesday evening we got real laughs. She laughed again on Wednesday, so we knew it wasn't just a fluke.

Please continue to pray for Lily's progress and especially for her brain to grow!


  1. Continuing to pray gor Lily. What a sweet laugh!

  2. So glad she doesn't need surgery! Will continue to keep her in prayer!

  3. oh she's beautiful you guys. No better sound than a baby laugh!!

  4. Thank you for the update
    She is adorable
    God bless

  5. She is beautiful!
    She will be in my prayers.

    God bless