Sunday, October 18, 2009

Baby Emma Update - 10.18.09

Instead of a precious picture of baby Emma, today I chose a picture of this outrageous roller coaster because I think it accurately portrays what the Crew family has been through over the last week. The climb upwards towards the graduation from the PICU into rehabilitation was joyful and filled with excitement as the Crews anticipated brighter days and the high of what all the new therapies in rehab would the emptiness they must have felt in their stomach when that high turned quickly to a low when they learned baby Emma would have to have surgery again...then the reality that surgery, nor recovery from surgery was easy. All of us can't imagine what this roller coaster of emotion feels like, so we can't tell Sophie & Tyler, we know how they feel. But we CAN continue to fall to our knees in prayer & uplift the Crew family, higher than we have ever uplifted them before. Please continue to spread prayer requests to your friends, family, neighbors, colleagues...anyone & everyone...specifically prayers for a "quick and painless recovery from this latest surgery, and for great progress in rehabilitation". HE is listening : )

Thanks to Sophie, for sending us this update last night:

Day 30. Wow, a lot has changed since I last updated. On Thursday morning, the docs rounded outside of our PICU room and decided we were ready for rehab! Wohoo! We were so excited to finally be moving out of the ICU and onto trying to salvage what we can of Emma's losses. The entire right side of her body has been affected (she has lost her speech, right side peripheral vision, movement of right side... these are only the things that we can see now... other things such as learning disabilities and speech/cognition won't show until years from now). It was a great day. Emma was finally coming off of those heavy drugs and was becoming more alert, calm and finally awakening from the sedation effects of her drugs. We wheeled her down to Ortho/Rehab and got settled into her new room. We were excited for the new schedule of therapies... PT, ST and OT. Well, rewind a minute to Thursday morning... Emma was feeling good, but we started to notice the CSF leaking from her stitches again... Em had what looked like two water balloons attached to her head - there was that much fluid built up at the craniotomy site! By Thursday night - our first night in rehab, the neurosurgeon decided to schedule surgery for the following day. The concern was that there was now a risk of infection...
Emma had her third surgery Friday morning. They reopened the entire craniotomy site to drain the fluid that was built up, and to drill in a temporary titanium mesh to cover the brain and section of the skull that was removed. This will be removed in a few months to be replaced by her real skull or prosthetic (as the doc explained 'kind of like Plaster of Paris that turns into a Coral-like material). Tyler and I found ourselves in that same waiting room - the last time we were in there was on that first night when Emmy had to have her first two surgeries to stop any more brain damage due to the swelling of her brain.
Well, recovery has not been that fun. Em has had a fever, has been uncomfortable (we have had to administer a few doses of morpheine), and has vomited a couple of times. Her left eye is completely swollen shut and is bruising. She has slept in 10 minute increments. She is so tired.
One of the other neurosurgeons came to see Emma today and explain that although he hopes this surgery works, there is still a possibility that she will need a shunt if the CSF can't reabsorb by itself. I am really hoping we don't have to go down that path...
We were hoping to start therapies today but that will have to be put on hold until *hopefully* Monday. We hear such great things about this wing of the hospital. The therapists are supposed to be awesome. The Doc is top notch as well. We are looking forward to getting her started.
On Thursday - our first day in rehab - we were finally allowed to take Emma outside to the Rehab playground. Emma breathed fresh air for the first time in one month... ahh it was so nice! She loved being outside! It almost felt like we had our girl back. Some of you may be familiar with Emma's fascination with planes, helicopters, birds, and well... anything that flies in the air. Before her trauma, she would point, scream in excitement and jump up and down at the sight of anything flying overhead. Tyler and I braced ourselves as we were out in the rehab playground - a few helicopters flew over us. We pointed them out to Em... I guess we need to be patient and hopeful that one day she will love them as much as she used to. Thursday was not that day, but that day will come. It just has to.
Tyler and I love that we can hold her again. Although we have to be careful with how we handle her head now, we can't get enough of holding our sweet girl in our arms. Her smell, her warmth and her little body cozied up to ours is addicting.
My mom brought some pajamas from the house yesterday. Em finally wore her first pair of cozy jammies in one month. Kind of nice to wear something other than just a diaper and a gown! We have to rework Emma's closet now - she can only wear things that button and zip in the front... at least for the next few months.
Thank you all for your continued prayers for our little girl. Please pray for a quick and painless recovery from this latest surgery, and for the great progress in rehabilitation. We just want to bring our baby home. Also, please keep the other children that are here in the hospital in your prayers as well. Tyler and I have unfortunately met a few parents during our stay who's babies and kiddos need all of the prayers they can get. Please pray for miracles to happen for all of these kiddos.

Sophie and Tyler


  1. Still thinking of all of you always. One more trial for this little fighter but she will come through for you, I just know it. Thank you again for the update. Many more daily prayers coming your way.

  2. Still praying everyday for Emma. Stay strong. "For I know the plans I have for you, declares the Lord. Plans to prosper you, not to harm you. Plans to give you hope and a future." Jer. 29:11

  3. Thank you for continuing the updates. I pray for you all every day. Stay strong!

  4. I am sorry, I don't know you, and happened to be sent this link from a friend on Facebook. I do not know the whole story behind your babies injury, but I can reach out and say that at 2-wks old our daughter had a shunt put in by Dr. Levy at Children's. It seems horribly scary, and she did have three shunts within her first year, but since she has been doing great and they say that she may never need another revision. I will think positive thoughts for your baby and if you have any questions you can reach me at -A

  5. We thought about Emma a lot this past week... At the pumpkin farm we prayed that she would be able to enjoy the fall air(even though it was WAY too hot for October)very soon. Despite the setbacks, it's nice to read that our prayer was answered and Emma got to head outside with her mommy & daddy!

  6. Sophie & Family, please know you are in my thoughts and prayers daily. Your strength and faith is inspiration. Emma's fight, her courage, brings me to tears. From my family to yours - God Bless.

  7. Sophie, Emma continues to be in our prayers every day. I appreciate your updates, thank you for taking the time to post. Hugs.

  8. I just read your story from a link on Facebook. My thoughts and prayers are with your sweet baby girl and the whole family. The ortho/rehab side to Radys is top notch. We were there for 3 surgeries when my son was 3m, 6m and April. Everyone there will take really good care of you guys. Your sweet Emma will make it through all the trials they will throw at you because all of you are fighters especially Emma. Please keep the updates coming and we will keep the prayers coming.

  9. My heart aches for this beautiful family. I will be sending this story to my churches prayer group and be praying for sweet baby Emma. Amy

  10. Sophie,

    I just came across your beautiful photography website and decided to read your blog...I do not know you or your family but your story and your little girl have touched me beyond words! I will pray for her recovery and for your strength to make it through this difficult time. She is in a wonderful hospital with amazing doctors and it sounds like you have a incredible friends and support system.
    Our prayers are with you!!
    Kelli M.