Thursday, January 6, 2011

ICU and Surgery Ahead

Inside the ICU there is no cell phone usage, no WiFi usage, and no stopping.  Things beep, respirate, alarm.  Code Blues are called, people run.  Still, there is an eerie calm.  Nurses seem to lope from station to station, all too used to this.  Tonight Brandi sleeps in the ICU, and I've gone home (tomorrow we'll switch).  Only one is allowed in the room overnight.

The day began as smoothly as any day might that happened to sit between two brain surgeries.  Scarlett looked better; her swelling had dropped and we were able to catch little glimmers of her eyelashes poking through.  She had three arterial lines, an intubation tube to breathe, and a plethora of other tubes and monitors that I don't want to gross you out with.  As the day wore on, we took turns sitting outside to field emails and phone calls, and inside we watched her right eye beginning to peek open.

Our surgeon came in to let us know his plans: an MRI tomorrow to provide a new geographic guide to a surgery on Monday or Tuesday.  This will be the final surgery with any luck.  "Monday or Tuesday" - the sort of casual time frame I used to assign to paying bills.  Brandi and I would much prefer something like "Tuesday, 9:35 AM," but we can't fight every fight these days...

The afternoon became anxious.  Scarlett was having "sub-clinical" seizures, a common thing post-brain surgery, where the brain neurons seize in a minimal way, without outward bodily signs.  These seizures began to increase to 4-5 per hour, and so her anti-seizure medication was upped.  This much anti-seizure medication presents a risk to her stopping breathing, but, as it was explained to us, that's not really such a big deal given where we were.  Bizarre, but true, and so Brandi and I agreed.

Also, we all had noticed her left arm and hand weren't moving a lot.  So it was in the afternoon that all of this added up to a call for an immediate CT scan.  Brandi and I were ushered aside, and we helds hands and watched a mobile CT scan machine, which looked maybe like a time machine, roll in.  Scarlett was picked up, and I remember hoping they didn't accidentally rip any of the delicate lines out of her skin.  They placed her in the CT machine, and after 20 minutes of scanning, the circular machine was rolled away, and we were allowed to comfort her again.

We can't really pick her up.  I wanted to, but there's just no way to hold her without breaking something attached to her.  So all day we'd placed our fingers in her right hand, which was gripping, and her little right foot, which can also grip with her long slender toes.  I placed my hand on her belly, to let her know I was there, and then both of her eyes began to open!  Brandi and I were so proud.

We waited for an hour, speculating what might explain Scarlett's lack of movement.  We both hoped it wasn't neurological, and we had plenty of reasons to believe it.  Her left side was more swollen, and she had more lines and boards restricting that side.  Surely this could explain it, right?

One of the neurosurgery team came in to tell us the news.  It was not what he had feared: brain bleeding.  What he did find was air - a giant air bubble composed of nitrogen.  Still no explanation for the lack of mobility, but that issue was tabled because there was no emergency course of action that needed to be taken on it.  The solution for the air bubble?  Tilt the head so that it came in contact with the brain, and increase the oxygen supply.  With that, our neurosurgeon team member explained, the vessels in the head would simply carry it away with the oxygen into the blood stream, and the bubble would disappear.

We looked at our daughter's CT scan, a gaping hole filling with half liquid, half nitrogen, and shrugged in agreement.  Sounds good, we guess.

Then, with the crisis apparently over, we settled in and I helped her make a cozy folding bed.  She has a t.v. there, some mindlessness of which I'm glad for.  I left hoping nothing else would happen while I'm gone.

Our nurse was very nice, very casual.  They all were like this.  The nurses and doctors moved from machine to clipboard to computer, as nonchalant as they could be.  They joked with each other and calmly carried out life saving scans and checks as though they were doing a load of laundry.  Just another day in the ICU for them.  Brandi and I meanwhile check another day off before the final surgery that can set us up to remove this thing.  If we can make that far, then maybe we can make it through Chemo.  If we can do that, then maybe we can win this thing.

Oh Scarlett, keep fighting baby.

.

62 comments:

Anonymous said...

Although this all sounds scary, it also feels like 2 steps forward, 1 step back, which if forward! YAY!!!

Patti H

Kimberly said...

I think and pray for you all the time. Pulling for her. You all are beautiful parents for that beautiful baby. (((hugs)))

BrownFamily said...

You all are in my thoughts and prayers again tonight!

amber :) said...

you CAN make it that far. look at how far this little girl has come. she's doing SO well. :) praying for her (and you and Brandi...) in Utah. she's a fighter, and she's not done fighting.

Nicole said...

You can do it!
We are praying for you guys ♥

Katie said...

We are all continuing to pray for Scarlett! I've told so many family and friends, and I'm sure many others have as well, your sweet baby has SO MANY people rooting for her!

LeAnn said...

YES Scarlett, you keep fighting angel baby!!! We're all fighting with you and praying so hard for you and your amazing parents!! Chris I am a friend of the Garretts- Sylvia- and I first learned about you and your precious baby girl on the 28th of Dec. I have been praying for you three ever since!!! I can't read one of your blogs without crying tears of sympathy or tears of joy! Thank the Lord the last day and a half they have been tears of joy-YES!!! She is such a beautiful baby girl and I just pray you both look back on this someday and can tell her about this experience and journey that she and you all went thru..you all deserve the happiest ending that a miracle from God can bring! Hang in there, one step at a time, and we will continue to be there for you! xoxo The Resh family- LeAnn, Mike, Michaela, & Landon

Anonymous said...

Chris and Brandi - hang in there. We're all praying for Scarlett, and hoping for the best. You are remarkable parents, and Scarlett is lucky to have you both. Love you all - Terri

Angel Girl said...

Your little girl is a fighter. Don't ever give up! God can certainly do miracles! Your little one is in my prayers but more importantly God sees her and is taking care of her :)

Anonymous said...

Ok I am addicted to good news...please keep them coming Baby Scarlett. I knew that God would help you and your lovely parents! Stay strong!

Elizabeth said...

Keep fighting little Scarlett! There are thousands of us out here praying for you!

Melissa said...

~Continuing hugs and prayers from Oregon~

Anonymous said...

Keep fighting baby Girl!!!! you got this brain tumor beat!!! You are such a miracle baby that god has brought to this world!!! He does not plan to call u home til you are a old lady with lots of beautiful great grandchildren!! Chris and Brandi you are well supported as well as baby scarlett we all care for you!!! Keep up the good work of keeping scarlett calm!! You guys have more guts and better attitude then i would have i would be bawling at every update!! keep the good news coming we LOVE IT!!!

Vanessa (sept 10 bbc)

Candy said...

Lord, we lift up precious Scarlett to you once again. Lord, you know everything this family is going through, you know their needs, you also know the final outcome. Father, let them find peace and rest in that. This too shall pass. I know you are keeping watch over precious Scarlett and Father I pray you would continue to heal her and restore her to perfect health. Scarlett, baby girl, you keep fighting! You are so strong, don't give up now!! You have too much life to live still. You have touched so many hearts around the world, so many people are pulling for you and love you. I will continue to pray for you, little one. Much love from Arizona, my thoughts are with you tonight family.

Rebecca {{BBC june2010}} said...

as the tears fill my eyes im praying to the good lord above that everything IS and WILL be ok..Scarlett is an AMAZING baby shes indeed a gift from god she is a very STRONG fighter she's going through alot,more then most ever will. I think of her every single day and you all as well (Brandi and Chris) you two are some AMAZING,STRONG,and DETERMINED parents with alot of love. {{warm hugs}} Just keep the faith and be strong. Scarlett is going to kick this thing in the butt..{{PRAYING}}

Jen said...

You said it best Chris. Scarlett keep fighting baby! Lots and lots and lots of prayers from Massachusetts!

Krista said...

Its 2:50am here and I just got around to checking in on you guys. I have been praying for your family and you sweet baby every chance I get! I am laying in bed between both my daughters crying, I can only imagine what you are going through and my heart aches for you. I am completely thrilled that Scarlett is doing so well. She is such a brave little fighter! My thoughts and prayers are with you all.

Anonymous said...

What a tough little girl you have...her strength is amazing. Her parents are pretty amazing people too. You are on the minds and hearts of countless people who are praying and will continue to do so. Thanks for the update...

Jenn said...

That's right...keep fighting Scarlett! We're all fighting on the outsides for you as well with loads of prayers.

Kendra said...

Keep fighting Scarlett.

Anonymous said...

You three are all amazing! I do not know that I could be that strong! And thank you for keeping all of us updated! It is great to hear she is making progress! Go Scarlett!

Amanda (Lansing, MI) said...

Following your blog, keeping you in our prayers.

BabyWeightMyFatAss said...

Praying for your beautiful strong little baby girl.

Anonymous said...

Still haven't stopped thinking about and praying for Scarlett and her family. Your story is amazing--what a strong little girl!

Mom2Twins said...

Now I can go to work and breath a little better. I'm praying.

The Hurlockers said...

She's a strong baby. She'll keep fighting.

Praying for you all...

Anonymous said...

My thoughts and prayers are with you as you all fight a fight most of us hope we never face. I admire you all as you stand together and face this battle.

Anonymous said...

Oh, Scarlett, you are a miracle baby! You keep fighting! Sending warm hugs to you Chris and Brandi - you both are amazing parents! Lot of prayers being sent your way from Wisconsin! (Oct. BBC Mom)

Lil said...

I've been following your blog & keeping your beautiful family in my thoughts each day. Stay stong little Scarlett!

Mary - BBC Nov '09 Board said...

Chris, I don't know you or your dear wife Brandi, but you have no idea how much I admire your love and determination you have for your precious baby girl. I think of your little family often throughout the day and pray each time I do that the Lord will continue to stand by Scarlett's side and give her the strength to continue fighting. It seems so unfair to ask such a tiny angel for a task like that. But she truly is a miracle, and a fighter like no other. Stay strong, I know you have faith, so many people are praying for you.

AC said...

Thanks for the update, and good job, baby girl! Thinking of you...

Bev said...

I can't imagine as parents what you two are going through. Please know that you have thousands of people praying for you guys and your baby girl. Keep fighting Scarlett!!

Erin (March 2010 BBC mama) said...

So happy to see more news of things holding steady and moving in the right direction. It's a long haul yet you all seem to have endless strength. Take care of yourselves - lots of love coming from Pennsylvania!

Anonymous said...

We are all praying for you and your family.
priya

Vicki said...

Keep fighting, beautiful baby girl!!!

amanda said...

Thank you so much for keeping us updated as often as you can. There are so many of us who check repeatedly during the day to see if there is anything new. We are all praying for the miracle you guys all deserve.

stephanie said...

Thank you for the update. I cant count the number times I have checked for new information. I'm very happy to hear that she doing well. I'm keep you all in my prayers.

Jessi Noelle said...

You guys are so strong! Keep fighting baby girl! We are all rooting for you!!!

Anonymous said...

praying hard for scarlett and your family. Stay strong!!!!! you're doing SO GREAT!

Anonymous said...

Nothing can take away your pain and none of us can truly understand what you are going through. But by letting us read your journey you are helping us feel as though we can do something for your sweet Scarlett. I am thinking of her and you and hoping for the best. Scarlett is a fighter and she loves you both... and it sounds like she is going to fight this with all she's got. -stefanel @bbc

Jessica and Katie said...

Keep fighting Scarlett and getting stronger. We are thinking of you every day! We will keep sending our love your way. I'm so happy to hear of these small improvements. Even little ones are steps in the right directions.
With love, Jessica and Baby Katie
Sept. 2010 BBC

Anonymous said...

Your family is in my thoughts and prayers. Hang in there! -Heather

Kristin - July 2010 BBC said...

Glad to here things are progressing well. Reading that she opened both eyes was great to hear. We are all praying and thinking about her. Scarlett is a fighter and she has proved that already.

The Sweatman Family said...

I can not fathom the amount of strength it takes for you guys as a couple to soothe your daughter and carry her strength through this!!! I prayed for little Scarlett with my 23mo old daughter during her bedtime prayers. God Bless you all!

katy said...

Lots of love and continuing prayers from North Carolina -- I got all of my people on this, as well! :o) Keep fighting, Scarlett! You are all in my heart.

Anonymous said...

From NY...BBC July 2010...I have shared your story with my family in return for prayers. I have tears streaming down my face from your entry today and are hoping that you can tell her these stories when she's a teenager and gives you an attitude, LOL. You are so strong and I admire you tremendously. I check for updates several times a day and have my friends praying as well...God Bless you every minute...

Anonymous said...

Keep fighting, Baby Scarlett! You are doing such a great job, and we are praying HARD for you, and your mom and dad!

With continuing love and prayers from South Dakota,

Fellow BBC Oct '10 mom and her family!

Anonymous said...

Sending tons and love and good thoughts your way! I can't imagine how scary this must be for you both (and for little Scarlett), I definitely admire your strength. Your little girl can and will pull through this, I just know it. This has made me realize how very lucky we are (we have a 6 month old little girl), I have been telling my daughter this for the last few days. Keep doing what you are doing, and we will keep sending love Scarlett's way!

From Stephanie and baby Violet in Colorado

Jennifer said...

You have such a strong, beautiful little fighter! You are in my thoughts and daily prayers! Hang in there baby girl!

Amy Biagini said...

Sending prayers and butterfly kisses!

Irene K said...

thank you so much for the update love, encouragement, positive vibes and good thoughts to Scarlett from Austin, TX

Anastazia said...

Praying for your little one and you too. I just found this blog through BabyCenter and am also a Bay Area momma. I'm glad you are getting excellent medical care. Big hugs.

Anonymous said...

Today I read all you post to date. It is such a difficult thing having a sick child in the hospital. From experience, spending 7 straight weeks with my then 17 year old son, seems like it will never end. But keep on forging ahead for little Scarlet. She needs you now more than ever. My heart goes out to you both as I type this. My prayers will be with you through this ordeal until she is a healthy baby. From: A caring heart in Indiana

Anonymous said...

Go! Scarlett! Go!!!! Way to show 'em what you're made of! You are going to beat this, I have NO doubt!!!! Hang in there mom and dad, you're almost there. God Bless You

Misslady06
August 2010 BBC

Anonymous said...

Im praying for baby Scarlett and your family. Thank you for keeping us updated on your little butterfly's progress. She is a very strong little girl surrounded by equally strong parents!

Laymie
November 2010 BBC

jenny said...

there is not a day that goes by that i don't think of your baby girl. She is such a beautiful, strong lil baby. Prayers as always to your family!! You are wonderful, inspirational parents and you make me realize what is important in life and what no to take for granted.

Jamie Lynn said...

Bless you both. You are so amazingly strong! God is ever loving, may his grace cover the three of you and your doctors. What a brave little girl you have. May God guide her fight to victory. - God is good all the time, All the time God is good!-

Anonymous said...

Scarlett!! We are cheering you on little Angel!! God has a purpose for you and I believe you are going to lead alot of unbelievers to him!! Keep fighting babygirl!! You are beautiful and have so many people rooting for you! God is watching over you and We will be praying for complete removal of the tumor and superb results concerning the Chemo!! You can Do IT!!

Anonymous said...

Scarlett!! Way to go, Girl!! Keep fighting!! Love and prayers to you and your family from an Aug. 2010 bbc mom and pediatric neurosurgery nurse @ the University of Kansas Hospital in Kansas City, KS.

Anonymous said...

God bless you, Brandi and baby Scarlett! Torn by all this but hopefull, because I believe in a God of miracles! The all mighty that can do anything! YOU WILL BE OK!

Anonymous said...

Brandi and Chris, your little Scarlett has captured my heart! I've been hoping and praying that everything will be ok and that you all are granted the strength to get through this trying time. My family and friends here in Atlanta, GA are praying for you. God Bless!

Bonnie said...

With Scarlett's name meaning red ... I believe it to be fitting for your sweet baby girl. Red is a vibrant color, usually used to show strength and fight. This is exactly what your sweet angel is displaying. As long as she knows she has mommy and daddy on her side she can take on the world.
I pray that in years to come this will all be just a story you will share to explain what fight and tenacity your baby girl showed early on in her life.
God bless you all!!! I will be praying day after day for you all!