Thursday, December 30, 2010

Settling In

Today Scarlett was admitted to Children's Hospital Oakland for monitoring until her surgery next week.  What a difference from our last hospital experience.

The best thing is that we were able to pack and plan ahead.  Last time, we didn't know we would be in the hospital, so we were totally unprepared.  My mom and sister shuttled clothes and toiletries to us.  This time, we cleaned the house, unplugged every conceivable appliance to save power ($$$) and left our house in good shape to return to eventually.  I walked with Scarlett to look at the house; her room with jellyfish dangling from the ceiling and the crib she has never slept in; her cozy bassinet next to our bed; the dog and cats who could tell something was awry.  I am hoping with all my heart that it was not her last day there.

As we checked in with admissions, we immediately felt the difference from the last hospital.  There, the staff in every department we dealt with, from financials to ICU, was caring and patient.  Here, we were treated as customers: "sign here, sign here, leave the pen, good luck".

I had a breakdown when I saw the room.  It is by no means a bad room, but so different from what we had last week that I was in shock.  We had had a large room with a window seat bed and a chair bed, our own bathroom and a sink, shelves, etc.  Now, we are in a shared room, where I was told the bathroom is for patients only (I told the nurse I would make sure it was available if Scarlett needed it...)  The teenager we were sharing with moved on shortly after we arrived, so we have it to ourselves, but otherwise, there is only room for one parent to sleep overnight.  The furnishings are old and worn, and it is dreary; we had to unscrew one lightbulb to turn it off.  Scarlett doesn't know the difference, but I sure do.  I know the room in no way reflects the care, and the nurses have been fine, but I felt a little bit of remorse.  This is a much older hospital, and it shows.

 We were lucky to meet our roommates mom, who gave me a quick rundown of the available services and a tour.  As we walked, we both shared the stories of how our children had been diagnosed.  Her son is fighting leukemia, and they are traveling from Nevada for treatment.  She was very kind and wished us well before they moved to their new room.  

Now we just settle in and get comfortable as they keep testing Scarlett to be sure she is up to surgery.  They are particularly concerned about the possibility of anemia; this would mean she needs a blood transfusion before surgery.

26 comments:

Anonymous said...

I am from the October birth club on BBC and have been following Scarlett’s story closely. I just wanted to let you know that I think of you guys often. Here it is 1:23AM and I needed to get up and see if there happened to be an update because I cannot stop thinking about your Scarlett and her beautiful face. In a couple of her pictures she reminds me of my daughter who was born on October 2, 2010. I have tears rolling down my face after reading your latest update entitled “settling in.” I am praying that Scarlett gets to see those jellyfish dangling from the ceiling again and I hope she gets to sleep in her cozy crib.
I lost my six year old daughter very suddenly and unexpectedly almost four years ago. I am praying that you never become a member of this “club.” I’m going to keep sending prayers up for your family. I know my little girl will do everything in her power to help Scarlett.
I wish you guys the best and my family and I will continue to pray for Scarlett. Give her tons of hugs and kisses, smell her, play “this little piggy” with her, most of all just keep loving her with all your might!!! God bless you, Chris, and Scarlett!

Irene K said...

I am also from the OCt 2010 BBC board, and I just wanted you to know I am thinking of Scarlett and sending good thoughts and energy her way. You all are very strong and your story is inspiring. Our daughter was born 10/12/10 and I have wondered often how I will deal with the worry that comes with being a parent. As my Mom told me, you never stop worrying about your babies. You are doing a wonderful thing by sharing Scarlett's story with everyone. Try not to let the room's condition distract you, focus on filling the room with love, just like you are already doing. Much love to Scarlett and her wonderful Mommy and Daddy.

Rebecca Tanner said...

Hi again. I've been on here every few minutes or so checking for an update...i actually told my fiance earlier as i was on here that if he ever just seen me break down on here or saw tears fall (as they always do when im reading this) not to be freaked out much that i was ok i was just shedding tears for little "Butterfly"...she's in my thoughts every single day and you as well as you and Chris are SO strong. There's so many things that my heart feels and my tears want to say but it's very hard putting things into words. I'll go to sleep in a little while and you,Chris,and Scarlett are very much in my prayers.

christao408 said...

My cousin Alex shared your story on her blog. Want you to know that my husband and I are praying for you and your husband strength as well as your daughter's health. Please know that you are not alone!

jennifer said...

Brandi and Chris... I'm thinking about you both and Scarlett every day. So sorry the accomodations there seem bleak.. but your optomistic attitude is bound to do so much to brighten up that room.

Hopefully it feels nice to have a plan.. and now all you can do is take it day by day. Blood transfusions are not at all uncommon pre-operatively.. and I'm sure they will only do what is necessary. Sending lots of love!

Anonymous said...

My family and friends are still thinkg and praying for your family. We wish you the best of luck with the strength and support that you will need to get through this.
Lorae-oct 2010 bbc

Sheila said...

Praying that Scarlet gets to enjoy her jellyfish for many years.

The Gleasons said...

Your sweet little family is in my prayers.

cdub5213 said...

It's amazing how easy it is to feel connected with someone you've never met simply because you share motherhood in common.

I have been thinking of your family and praying for a successful surgery. May God guide the hands of the doctors and safely remove all sickness from your precious daughter.

devon said...

I know you dont know me. I heard your story on the november 2010 BBC. Know that my family and I continue to pray for you and your family. I pray for strength as you, "mom up." I cannot imagine the courage and strength that that phrase entails right now but I know Scarlett is blessed to have you guys fighting for her!!

Emy said...

Hello again!

I just want you to know that there has not been a night since I read this blog that I haven't asked God with all my faith to work a miracle, to be her doctor of excellence and the hand that heals Scarlett and your family, to be your comfort and strength and to never leave your side. I see you as a hero mom you are a true inspiration.

Anonymous said...

Just another October BabyCenterBoard member offering up prayers for a miracle for your baby. I checked the Facebook group this morning that was started for Scarlett and it is now over 1,000 members strong! There are a lot of strangers out there rooting for you and your little girl. I know that you have never met most of us, but I just wanted to let you know that there are a lot of people out there who care about you and your family. I just wanted to send you some peace, love, and luck as you prepare for this next step in her treatment. The story of your little one has touched so many and you are an inspiration to us all. Big hugs and stay strong! Your LO is blessed to have such loving parents; she couldn't have chosen a better family.

Anonymous said...

I heard about this on the Bump, I am so heartbroken over what you and your family are going through. I will pray for you beutiful baby girl every day. Stay strong and keep the faith that God will heal your little butterfly!

andrea said...

Not one single day goes by that I don't think about and pray for your family, especially your precious little fighter. You are a more than amazing mom, you truly are, and I deeply admire your strength. You taught me the term "mom up" and that is exactly what you are doing. We are the "rocks" for our children. It's obvious that Scarlett knows she is deeply loved and cared for, it shows in every photo!
Keep fighting baby Scarlett!! xoxoxox

Jenny said...

praying for you all!!

Anonymous said...

I want you to know that my heart aches for you. I cannot imagine the sadness you must be feeling. That sweet and beautiful baby girl of yours is so fortunate to have such loving and devoted parents. Please know that you are your baby girl are in my thoughts and my heart. Please keep us updated on her progress. (((HUGS))
Melissa

Autumn said...

I first heard your story from the August BCC Birth board. Since then I have read your story and am amazed at your ability to put emotion in to words. I sit hear and tear up every time there is an update and my little boy does the same thing. Everyday I give my son an extra hug and an extra kiss to remind myself how precious he is to me. Scarlett has touched many lives and so have you mama. Stay strong, many people are thinking of your wonderful little person.

Sandy said...

Thoughts and prayers are with your all. You are never far from my thoughts and I do so hope Scarlett will see those jellyfish again. It is hard to believe that we have to speak in terms of maybe or maybe not for someone so young.

Anonymous said...

Our best wishes to you, Scarlett and the family. We pray for Scarlett's health wishing she heals soon. Big hug from Miami to you and baby Scarlett.

Anonymous said...

I too am from the BBC Oct board. I don't really post and you don't know me. I pray for you, Scarlett and your family every day and think of you often.
My love goes out to you all, my heart aches for you, I can not imagine how you feel, but you are a strong woman and I am so amazed at your ability to put life in perspective and continue to write this blog.
My new years wish is for your beautiful daughter. I wish you a healthy new years and we will continue to keep you in our daily prayres.
Much love from Ontario, Canada.

Chelsea from BBC - Sept 2010 BB said...

I (like many) heard your story from BBC and have a little boy born Sept. 24th this year. Brandi, I LOVED your "Mom Up" post. It is so true & you have an amazing spirit that comes through in your posts. I can only imagine how much comfort that gives baby Scarlett. Thinking of you, Chris, your family & of course little Scarlett & hoping with all my might that you all come through this happy & healthy VERY SOON! Chris, I have often shared the same feelings in my relationship with "God". I lost my Dad very suddenly and have dealt with anger, etc... in recent years. Becoming a parent has strengthened my faith in a higher power and I am hoping that my prayers along with your many other supporters are being heard, listened to & will very soon be responded to with none other than great news for you all. Best wishes!

Jen Engle said...

There is an entire country between us, and I don't even know you, but I can't get you off of my mind. I think of you often. I'm not a very religious person, but I pray for you, your husband, and your daughter. I hope peace finds you.

Anonymous said...

I've got my entire mom's groups praying for you all.

Kassandra said...

Hey Brandi!

Is there a POBOX or place we can send you things? I'd love to send you some art to help liven up that dreary new room of Scarlett's! The happier you all feel the more positive Scarlett's outcome can be!

I'm a fellow July 2010 Mama (IllegalUTurn) you can PAN me there or let everyone know on your blog. I read everyday.

Prayers to you and yours through this journey! <3

Anonymous said...

Hi Brandi,

We know each other only slightly (my son Cole is a 3rd grader at your school) but I've been following along too. I wish you strength and hope.

I am a regular blood donor because I have a useful type: CMV negative, a requirement for newborns. If you need a donor maybe I can match for you - or at least donate in her name to defray costs. You can reach me through the school email list.

--Kristina

Anonymous said...

I keep reading this part over and over...

"I walked with Scarlett to look at the house; her room with jellyfish dangling from the ceiling and the crib she has never slept in; her cozy bassinet next to our bed; the dog and cats who could tell something was awry. I am hoping with all my heart that it was not her last day there."

My heart absolutely breaks for you! I pray with ALL of my heart that your baby girl will grown up and love her room, her puppy and kittys... I pray so hard! May God give you a miracle you so deserve! hugs!