Scarlett has been doing well since her first surgery. It has been 4 days, and she is starting to look like herself a little more each day.
The incision is healing well, thought it will be re-cut in surgery Friday. No brain bleeding after sugery, which was a concern. Sub-clinical seizures were still prevalent, so anti-seizure medications were increased, but today's EEG will hopefully show improvement.
The swelling has decreased a lot, so she can now open both eyes. She doesn't make much eye contact or track anything, but I think she does look at us. Her left eye was not reacting to light yesterday, but today it is.
Her left arm and leg are regaining some motion. She swats at the doctors and nurses when they pry open her little eyes (that's my girl!) It's funny to watch, because when she is calm, they observe no motion, but the second their hands cross into her bassinet space, she opens her eyes and gets her arm moving, as if she's been spying on them all along and knows what's coming next.
I am pretty convinced that the IVs and swelling are a main cause of the stiffness in her left side. The doctors agree, but they don't know for sure if the seizures are affecting it as well, so we just have to wait. Meanwhile, her right hand is actively seeking contact with someone's finger or a fuzzy toy whenever she is awake. I love to watch her fingers start searching, but I try to fill them with my finger or a kis as soon as I can.
The surgeon who assisted in surgery, and will again be there Friday, took time to explain the newest MRI images. It is amazing to see what her brain looks like now. My best explanation is that the original scan showed the tumor to be about as big as my fist. Now, the remaining tumor is about the size of my pinky finger in the fist. The rest of the tumor space is now fluid and air...we joked she's truly an "airhead" now (have to keep a sense of humor sometimes!!!)
This surgeon explained more about why they stopped the first surgery when they did, and why they agreed to take on such a risky case in the first place. Scarlett's tumor had a very defined boundary from the brain. This led to it basically peeling away easily in surgery (as "easy" as an 12 hour brain sugery is.) This gives a much better chance of fewer malignant cells being left behind, and an overall better surgical outcome. There are two dangerously large veins connected to the remaining chunk of tumor. Somewhere near to this is likely the origin site of the tumor, where it began and is probably more integrated with brain tissue. They could have, as he put it, been greedy, and gone for the whole thing, but may have run into dangerous territory late at night when she had been sedated for too long. They were being cautious, and we are grateful for that.
Basically, this all boils down to the brutal truth: the next surgery is going to be hard and long, even though it is far less tumor to remove.
However, she is strong and handles anesthesia well. Waiting until Friday stinks, but gives her body a chance to rally and heal, so it can continue to fight through the next surgery.
49 comments:
still out here supporting you and sending love and strength to your little brave and beautiful Scarlett. You are an amazing family- keep up the good work Mommy and Daddy :)
I love that she will swat the nurses and doctors! You clearly have a little fighter on your hands. She sounds like a bright, sweet little baby. If anyone deserves to be cured, it is her, and her strong and sweet spirit will help her heal.
WOW!!! So wonderful to hear about all the progress sweet lil' butterfly has been making in such a few short days!! The Lord continues to watch over her and the both of you and is preparing her and you for this important day on Friday! She has proven to be SUCH a fighter and she will pull through this final hurdle in surgery, I just know she will!!! You both have held up so well and have been an amazing, shining example to all of us!! May God continue to pour out all his Blessings on sweet Scarlett and the both of you, and we will all rally around at the finish line and be there to cheer with you!! God Bless you three and keep each other upheld...you are both doing an awesome job!! Thank you for letting us breathe a sigh each time you update us...she's such a beauty and a miracle to behold!! Take Care and Much Love being sent from the Resh Family in Fremont, CA~ LeAnn, Mike, Michaela & Landon
Thanks for so much detail, Brandi. I miss her and you and Chris and am so glad to hear she's getting stronger. I've got a cold, but my heart is there with you. You and Chris are so strong and loving. Thank you for letting me love her too.
Scarlett is an amazing girl!! No doubt, with amazing parents like you two.. I really appreciate you taking the time to fill us in on how she's doing...I'm so stoked that she's doing so well and I will continue to have all of you in my thoughts. I am having a repeat c-section on Friday but I will definitely be thinking of Scarlett and hoping that this surgery is as successful as the first. Stay strong...you guys are awesome!
S in Oregon
So glad to hear that she is doing well after the first surgery!
You have a fighter there. Good for her! Such a long wait for surgery to continue but the healing will be a blessing. We are all thinking of you all often during the day.
gosh shes such a fighter i think that i can honestly say that Scarlett is my "hero" she doesnt let anything keep her down and thats so great shes so strong just like you and Chris. I love that she was spying on the nurses and then swated at them (too cute) shes a tough one. Im praying and pulling for you three every day. {{hugs}} and {{prayers}} STAY STRONG.
I just wanted to let you know that I think about Baby Scarlett and you guys everyday. I'm just over the bridge in Foster City and praying for you guys big time. Good luck on Friday (and for always). I'm cheering for Scarlett to make a full and speedy recovery.
Just checking on your blog, and hearing of her progress brings me a joy! Scarlett is ever present in my thoughts and in my prayers as are you mommy and daddy.
Misslady06, in NC
August 2010 BBC
The Lord has surprised us once again with His awesomeness ! Every time I read your blog Scarlett has me in awe with her wonderful strength.
We will keep praying for you and your beautiful family.
Love, Angela, Kings & Allison
Heal baby heal so you can enjoy life with your wonderful parents
So so happy for you all. I pray for continued good progress and an uneventful surgery on Friday! Thank you for keeping us all updated. I doubt I could do the same. Much love to all of you! ~Shanna, Oct 2010 BBC
I've been following your journal and even changed my signature to red on Babycenter. I hope the surgery goes well on Friday! My family and I are sending positive energy, prayers, and good thoughts your way!
I've been checking your blog multiple times a day for weeks and I'm always so happy to read an update - especially when they are ones with good news. I also pray for you several times a day and always again at night when I say prayers with my 17-month old son. I'm praising God that he's given you what sounds like an amazing surgical team, connections with other families that have been through similar situations (with success!!!), support from people all across the country, and loving family and friends to lean on. I'll be continuing to pray for you all and anxiously waiting for a positive report after surgery on Friday. "Good luck & God bless" from Twin Lake, Michigan.
My husband and I have been following scarlett's journey from southern california and it has been such a gift to be privy to.
You have an amazing daughter who fills so many of us with hope. We are praying for a speedy recovery and long life of joy for your family.
HI I just found your blog through a link from the September mommies from What to Expect group. My daughter was born Sept 17th and Due Oct 11th. I have been reading your blog and I am praying for you and will continue to keep you guys in my thoughts and prayers. I truly believe in the power of prayer. Please keep your heads up and know that there are many people out there praying for a miracle for you precious baby girl.
After all of the difficulties you have been through, reading this seems like you can finally be optimistic about this horrible situation. Your baby girl is strong and resilient. Good luck this week, and I continue to think about all of you and pray for you. I will definitely be doing the same again this week. Enjoy your baby girl and be reassured that she is strong enough to make it through one more surgery! :)
Oh Scarlett hun, you have this. We are praying for you and know you will pull through and become a strong smart little girl.
Scarlett, you are so amazing! Keep fighting, baby girl! We are all praying for you and your wonderful family!!!
From the October 2010 BBC group. My twins don't make much eye contact either, especially when they are in unfamiliar places or with unfamiliar people. Just don't want you worrying about every little symptom! Hang in there! Many people praying for y'all in South Carolina.
God is so good!!! I love your little fighter. Everyday I look forward to hearing news of little Scarlett. Thanks for allowing us to be a part of your family's life. Major prayers for Friday! I know she will pull through!
I am so glad you are keeping your sense of humor during this time, it definitely does help! :)
And again, I am tearing up this morning after reading that Scarlett is constantly grasping for a finger to hold. What a sweetheart. I am glad that she gets some time to rest and recuperate before the next round. She is so strong and so are both of you!
Scarlett and your family are in my thoughts. You're doing a great job, mommy!
As someone who went through surgery as an infant (nowhere near as invasive as hers) I can assure you that your touching, kissing, presence, and voice makes a world of difference in her life and in her recovery. Stay strong. You two are such an inspiration and please know that you have many, many people praying for you and sending healing thoughts your way. Scarlett is wrapped in a blanket of internet love right now. :)
keep the good news rolling! make my day so much brighter! hugs and love to you all and scarlett! <3
I'm praying for you and your family. You and Scarlett are so strong for everything you have gone through already. She sounds like a fighter and I know God and her toughness and the love surrounding her will get her through anything.
There's not much to say that hasn't already been said... I'll be thinking of and praying for Scarlett (and you and your husband, of course). Stay positive!
Whitney (BBC member)
I am still praying for her Bandi... She consumes about 90% of my thoughts every day. I am an October mommy to a baby girl, and I cant help but to feel so fortunate for my DD's health. Little Scarlett is a fighter! I wont stop praying and she wont stop fighting.
Michelle
(BBC member)
I'm so amazed by the fight in your little girl. Continuing to send you positive thoughts for Friday's surgery.
I check this blog every day and never forget to say a prayer for you and your family. What an amazing little fighter you have on your hands! She is spunky, just beautiful and so full of life. I am a new mom as well and could not imagine going through what you are. Your blog is definitely getting around so please know there are a lot of people praying for your family, especially beautiful baby Scarlett!
Found your blog on babycenter and just wanted to add more prayers for your strength and for baby Scarlett and all who are taking care of her!
So much good news today...glad to hear it! I'm always thinking of Scarlett.
I heard about your precious Scarlett on The Bump and am so profoundly moved by the fight she is giving and your amazing strength as parents! I follow her progress and pray for her safe recovery. Will be thinking positive thoughts for her next surgery on Friday!
You don't know me but I just wanted to let you know that I am here sending love and good thoughts to you all. I made a small donation to you, I know it's not much I hope it can help reduce your burden a little. I'm so happy to see that Scarlett is doing well and I'm sending good wishes that her second surgery is just as successful.
I heard about Scarlett and your family on the BabyCenter Community. Our family is keeping Scarlett and your family in our thoughts and prayers. I check the blog everyday to see updates and I can't wait until the day comes when you can take her home and not go back for any more surgeries. I know it will happen, stay strong! We wish you all well.
I think about your little girl at least once a day and I get on the computer a lot more often now adays just to check in on Scarlett... The love you both have for your daughter is very obvious through this blog..I wish you all the best of luck and will keep thinking of Scarlett through out her fight and especially friday while she is in surgery. oh and my heart melted a little when you posted that she gave you a smile, she is truly a very beautiful baby!
I am so happy to hear Scarlett is continuing to fight and get better! You are all in my prayers.
Leslie B
from Baby Center
It is so amazing to hear that Scarlett is bouncing back as much as someone so tiny can. I haven't been good at praying for sometime now but last night I laid awake for a long time with my sweet baby boy beside me pleading for Scarlett. Her story has deeply affected me and I shall continue to pray for the whole family everyday. Stay strong Brandi, Chris, and especially you sweet little Scarlett!
Hang in there guys! I check your blog everyday and keep you in my prayers every night! I too am a BBC member, and I was linked to your story through a BBC friend of mine! Hang in there and I KNOW that Scarlett will fight through this and your only concern in the future will be whether to let her take the car for a date that night LOL!
Keep fighting Baby Scarlett! And stay strong Brandi and Chris! And thank you for the updates. I check your blog everyday to see how she is doing. Sending healing thoughts and energy your way!
Look for updates on your blog everyday. Glad to hear she is fighting so hard and showing them who she is. Keep swatting at them Scarlett. Praying for you all everyday and thinking of you so very often. Hugs and prayers from Pennsylvania.
Amy-January 2010 Group on Baby Center
I am happy to hear things are going so well. I know your little Scarlett is going to do well with Friday's surgery!
-My heart is with you guys, love to her and love to mom and dad!
I was led to your blog through The Bump. I think of Scarlett daily and hope and pray for all of you. It sounds like she has the best group of surgeons possible!
I love that you still have humor along with your hope, Im sure that helps. Still praying for your Butterfly.
Ive been thinking of Scarlett today and hope she is having a good day. You and your family has been in my thoughts and prayers. She is truly a little miracle to all of us.
Every when I put my six month old girl to bed I pray for a miracle for baby Scarlett. May the grace and peace of God be with you all during this impossibly difficult time.
<3 <3 <3 Thank you guys for updating as much as you do! I know you guys are going through a lot, but it means a lot to me (and many others I'm sure) that you take the time to update us on her progress as often as you do. There are so many of us out here who have come to really love Scarlett and are truly praying and hoping every day that she gets through this soon and gets on her way to living a healthy, care-free life! My thoughts are with you guys often, and I'm so happy every time I read an update and see that she is doing so well :) She truly is a fighter, and it makes me so happy that she has two wonderful parents there by her side through this journey. Hang in there guys, keep the faith, she is a miracle happening this very moment!! <3 <3 <3
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