Baby Emma Update 10.9.09

Thanks to baby Emma's Mom, Sophie for today's update. Let's all continue to rally friends, family, neighbors, colleagues & prayer circles to pray for baby Emma's miraculous healing & uplift the Crew family.

Day 21. It's 1:45... I believe at this exact time three weeks ago, Tyler and I found ourselves in the Healing Garden here at Children's Hospital, our heads spinning, confused and devastated, with the news that our baby would need to get her skull removed ASAP to relieve pressure to her damaged brain... I still have moments where I wonder if this is all a dream...

Well, yesterday was a big day... our little Emma was taken off of her ventilator! They replaced it with a cannula to assist with her breathing. We got to meet our baby again for the first time. We walked in after the extubation to find a beautiful little baby sucking fiercely on her paci. Her eyes wandering about. Tyler and I was amazed. The nurses had told us that she would most likely not be able to have the suck reflex for a good few weeks. Well our little Emma pulled a trick out of her sleeve from the get go - she proved them wrong! Hoping that this is just the first of many good surprises she has for us. Tyler and I were smiling from ear to ear - we have not had a happy hug in such a long time - it felt so good to hold my husband and feel pure joy radiate from both of us. THANK YOU GOD! He is listening...

They removed the drain and pressure guage from her skull that they had placed in just a few days ago - we never had to drain her CSF so it was taken out. I am keeping my fingers crossed that her left side doesn't fill up again so much that it starts leaking out of her stitches again.

Emma is a like a newborn... we are just getting to know her for the first time again. We are in awe of such the sweet angel that God has saved, and anxious to get to know her, her likes, dislikes... Just like the first time Emma was born, I sit by her bed for hours and admire her, breathe in her scent. In many ways, she is a newborn all over again. She lays quietly and cannot make noise yet, just faint whimpers. Her eyes wander around as she takes in the new sights. Her paci sucking is fierce but weak. She doesn't know her name, or at least can't turn or focus when we call her. She sleeps for very short periods and then is awake again. We have a long road ahead of us, but Ty and I are sure to appreciate every step of it. Many babies don't survive what Emma went through... Emma is a fighter, and she is going to prove to everyone that she can far exceed everyone's expectations. She is strong. She is innocent. She is good.

Right now I am sitting beside Emmy who is whimpering - Ty and I are convinced she is hungry! They won't feed her anything by mouth until the docs can do the 'suck and swallow' test with her, which might not be until Monday at this rate... the paci isn't cutting it. I just want to hold her. Ty and I were both able to do so for a few minutes yesterday - I didn't want to give her up - I missed holding her so much. I will see if our nurse today will let me hold her again...

We had a Healing Touch nurse come to see Emma today - she is great - she said she felt a lot of pressure in Emma's head and that she has a headache. She did her energy 'sweep' and Tyler and I looked at each other in amazement as Emma closed her eyes and drifted off to sleep...

Thank you so much for your continued prayers. We have been overwhelmed with the amount of love, prayers and positive thoughts we have been getting from everyone. Thank you all for keeping our sweet Emma in your prayers.

Love
Sophie and Tyler.

Baby Emma Update - 10.8.09

Praise the Lord....just received an update from Emma's Mom Sophie on Facebook:

AWAKE!! EXTUBATED, SLEEPING AND SUCKING ON A PACI!!!! THANK YOU GOD!!!!!!!!

Prayers are working everyone!! Let's keep uplifting baby Emma & the Crew family in our prayers & thoughts. This lil girl is a fighter & we all can't wait to see her smiling again!!!

Baby Emma Update 10.6.09

Extra prayers & notes of encouragement are needed for the Crew Family as they go into what will surely be a tough week ahead. Thanks to Emma's Mom, Sophie for keeping us all updated on her lil angel's recovery. Below is an update from her that she sent over this afternoon:
Day 18. Still here in the PICU. Yesterday was a tough day as we were reminded by the (sweetest and kindest) resident doc who has been with us since day one, that Emma's brain damage is 'extensive'. We're not accepting that. The only thing getting us through every single long hour and day of this nightmare is hope. Yes, sometimes my hope seems to get thrown on the floor but I pick it right up again. We are trying so hard. The docs had to reinsert a new drain and ICP monitor. her 'bolt' has been removed from her skull and a new hole was drilled into the right side of her skull to remove CSF from the ventricles of the brain. Currently the drain is turned off but they would open it if her ICP levels get too high. Ty and I were not happy with this decision but we need to trust that the docs know what they are doing. We just don't want her body to become dependent on dumping CSF rather than reabsorbing it. If this becomes the case, she would need a permanent 'shunt' installed to drain the CSF into her belly - for the rest of her life, every time she falls or gets a fever: Xray. I guess that is just the least of her worries at this point though... 'Emmy' has been moving her left side a lot - we already know that her right side has been affected as it is significantly weaker (left side of brain controls right side of body from neck down). Emmy opened her right eye today for a few minutes - just barely cracked open but enough to put a huge smile on our faces. She did this yesterday for a few minutes and I swear she moved her eye to look at Elmo that I held up for her. Today she didn't move her eye to try to follow us though... praying her vision is not totally gone (Em has Retinal Hemorrhaging). The docs want her to begin 'waking' so they are decreasing her meds little by little and if all goes well, she will be off of the ventilator in a couple of days - if all goes well. It's really 'Two steps forward, one step back' for us. As she wakes, fear and nervousness are setting in.... we pray to God that she has not lost what it is that makes Emma our 'Emmy', our sweet, sneaky, snuggly, funny, intelligent, witty little girl. We miss her eyes - her big sparkly eyes. Those things light up a room... so much that each time I look into her eyes, I want to grab my camera and capture such sparkle. We miss her little dance - all you have to do is start singing Lalalalala... and she starts dancing to Elmo's Song. She loves music - she points to the stereo and gets excited. We miss her new walk... she would take a few steps, look down and smile, and take a few more steps, look down, and keep going... We miss her cuddles - she knew how to cuddle like nobody else. We miss that she greets Pumba (Ty's Wild Boar Head that hangs in our garage) each time we enter the garage door by pointing and saying 'M-ba'. We miss her so much... Please God don't take this away from us. Please continue to pray for our sweet little girl. The next few days are supposed to be 'very uncomfortable' for her as she wakes. Please pray that she awakens completely, painlessly, and with minimal permanent brain damage.

-Sophie & Tyler

10.5.09 -Update on Baby Emma...from Emma's Mom, Sophie:

"Today is day 16 and Emma is still in the PICU. A few days ago, they removed the drain from her head that collects all of the additional blood and fluids that should naturally be redistributed into her system and expelled (pee and sweat), but for Emma, it seems her brain is not getting the message, and she is accumulating fluid where she got her craniotomy (where her skull is missing). Luckily it does not seem to be pushing into her brain so her ICP levels have not been affected by it. She had yet another CT scan (this has to be #7 or #8 now...) this morning which confirmed it is just fluid and not new blood. There is talk of a possible infection, and talk of needing another surgery to add the drain again, or another procedure where a tube would be inserted from her brain to her tummy - this would be permanent - I hope this does not happen. So in the meantime, the 'tree hugging granola cruncher' side of me is trying Arnica Oil on that side of the skull in hopes that it will reduce inflammation and get some fluids moving around. I am also waiting for the pharmacist to approve adding some Omega-3 oil - can't hurt, right?Emma has been moving her limbs a lot more lately. Her right side is a lot weaker but hey, she's moving, and that makes me happy. It gives us hope that she will be able to walk someday. She twitches her eyelids - this is how we know she is awake. I really think she is trying hard to open them but doesn't have the strength yet. Although the nurses say this is normal as she slowly wakes, the hardest thing to watch is our little girl have bouts of 'coughing' where her face turns red, her body trembles and stiffens, and tears roll out of her closed eyes. It breaks my heart to see her in pain. The nurses suction her ventilator tube to remove the yuckies and she then calms down. They have started to give her Adavan (sp?) to knock her out when she does this - her ICP's go sky high, so this helps bring those numbers down. Her hospital bed is a stuffed animal zoo - she is going to be so excited to meet her new animal friends when she wakes up - thank you for all of them!

Ava is doing ok. My mom flew out from France to take care of her, so she is living as close to normal of a life as she can, except for now mommy and daddy don't live at home, and she comes to the 'hosipal' every day for a couple of hours... we are not sure letting her see her sister is the best thing right now, so we just play in the courtyard or at the Ronald McDonald house. Tyler and I are hanging in there. We are so grateful and humbled by all of the love, dinners, thoughts, prayers and support that our sweet Emma is receiving. Thank you all for your continued prayers and positive thoughts.

~Love, Sophie and Tyler"

Baby Emma Update - 10.4.09

We had the pleasure of joining forces yesterday to walk for Baby Emma Crew at the Rady's Children's Hospital walk around Sea World & Mission Bay. It started out as a gray morning, but by the end of the walk, the clouds had cleared & the sun was shining so bright. We were all hoping that same warmth we were all feeling was being felt by the Crew family as God's love and the support of the community, friends & family bubbled over for them!

We received an update late last night from Emma's Mom, Sophie:

"No changes today...Emma is having trouble re-absorbing her CSF so hoping for no more surgery to dump it out. Decreased meds and ventilator yesterday but not totally ready for all of the changes...baby steps... Thank you all for honoring Emma during the Rady's walk at Sea World today. We are so blessed to have such caring friends - you are ALL wonderful... thank you for the continued prayers. We miss our Emma..."

Baby Emma Update - 10.1.09

Today we received some good news that Baby Emma is having another good day. She can now move both her legs and she squeezed her mom Sophie's hand with her RIGHT hand (which is the hand she had not been able to move yet). It is fainter than the left, but it's movement! So she is moving both hands and legs now! Still asleep, as it might take a few more days for the increased drugs to make their way through her system, but she seems to squeeze Sophie's hand in response to music or being read to, which is AMAZING! The doctors are saying that the movement in Emma's legs might be a sign that she will be able to walk someday!

Keep the prayers going everyone...they are so powerful & the Crew family is definitely feeling the love from everyone & the good Lord above.

Walk to benefit the "Emma Crew Fund"

Please sponsor the Snyder, Marchesano, Thompson & Amos families in a Rady’s Childrens’ Hospital walk this upcoming Saturday to benefit the hospital & also the “The Emma Crew Fund”, which has been set up to receive contributions to assist with the cost of medical care and treatment for Emma Crew, 14-month-old daughter of Sophie & Tyler Crew. Emma suffered a massive head trauma while at daycare on Friday September 18th, 2009. She remains in a coma in critical condition at the IC unit of Rady’s Children’s Hospital.

Sponsorships/gifts will be directed toward the mounting medical expenses that are being incurred as Emma receives treatment and her parents miss work to be by her side. Sponsorship checks for this walk can be can be made payable to SDCCU marked “Emma Crew Fund – Account #000368773100” & mailed to San Diego County Credit Union @ 6545 Sequence Dr. San Diego, CA 92121 (or handed to the Snyder, Marchesano or Thompson families).

**Please be advised that sponsorships/donations can continue to be made after the race also.

Please go to http://www.shamuandyouwalk.com/ for more information about the walk.

Expressions of love, concern, and prayer can be e-mailed to hopeandloveforthecrewfamily@gmail.com.

Blessings & thank you for helping this family in need!

p.s. SPECIAL THANKS TO SAN DIEGO COUNTY CREDIT UNION FOR THEIR SUPPORT & FOR BEING SO HELPFUL WITH GETTING THE EMMA CREW FUND STARTED!!!