Wednesday, January 12, 2011

Alone

Still doing great!  Catheter came out yesterday.  Blow-by oxygen was stopped (it was annoying and loud, with very few results).  Swelling is greatly reduced, so her left extremities are moving more freely.  She gets drips of milk by mouth, but is taking full amounts through the nasal-jejunum tube.

Her newest prescription:  being held 30 minutes 3 times a day.



Tomorrow she has a stealth MRI to map out Friday's surgery.  There is no way to know what will happen after surgery, so we just have to wait and see.

Last night, I drove home by myself for the first time.  I haven't been alone since Scarlett was first hospitalized on December 17.  I have been too scared to be alone with my thoughts.  Being alone means I am not distracted by conversation, and my brain takes off into the "what ifs".  The long drive (about an hour in traffic last night) is too much for me sometimes, but it is worth it to go home and rest.  The hospital is not at all restful.  Even if I sleep, I don't relax.

I tried to go to the grocery store to find something to eat before I got home.  I walked around the entire store, too distracted by the possibility of running into someone I knew.  I have been so isolated I haven't had to really talk about Scarlett to anyone who isn't intimately familiar with her condition.  Even casually at the hospital cafeteria, when someone asks "How are you?" and I am at a loss as to how to answer.  It's too complicated to explain everything, so I just lie and say I'm doing well.  Facing the looks of sympathy and consolation from close friends is much more difficult.

I left the store with nothing, and stopped for fast food instead...I'm eating like a kid of vacation lately, not taking the time to make healthy choices, but eating whatever sounds best at the moment.  It's bad for my milk supply, which I am determined to keep up in some capacity.  It is a huge struggle to pump regularly in the hospital, but I keep at it because I know breast milk is best for her, especially as her immune system is weakened and her little brain has so much work to do.  We keep storing it in the freezer so that when she's ready, there is plenty.  I don't foresee nursing working too well, though the occupational therapist wants me to try.  It was always a struggle for us, so I don't know if Scarlett will have the patience to work at it.

I would like to THANK YOU to everyone who has sent Scarlett or us a gift.  We have gotten some lovely gifts that are greatly appreciated.  I don't know always who they are from, but I wanted to say how wonderful it is to receive them.  We are so grateful to all the love and support being sent our way.  We are photographing everything for Scarlett to see one day how loved she was throughout her treatment.

60 comments:

Anonymous said...

Thinking of you and Scarlett every day! Love and prayers!!

Haley Norman said...

I am SO glad you get to hold her! I bet you can't get enough of her sweetness :-D
Prayers and love are coming your way like a flood!
Many Blessings!!
Quade, Haley & Hadley Norman
Muskogee, Oklahoma

Kelly (kjb926) said...

Keep your head up! Things are looking up, Scarlett is SUCH a fighter!!! <3 <3

Your friend at BBC.

Michelle said...

You both are beautiful!!!

Anonymous said...

It's so wonderful you can hold her now!
She is an amazing little girl.
Still praying for your family x

Jessica said...

Prayers coming from New Zealand.
Keep fighting precious girl.
We are so glad you are able to hold her now.

BrownFamily said...

What a beautiful picture! Many prayers from Idaho!

Connor's Mommy said...

So glad that you get to hold your sweetie! You both look fantastic! Still praying for you all.

Jen D. said...

Best meds ever!

Amy Biagini said...

It must be so wonderful to hold her again! I think of you guys all the time, Scarlett has really made an impact on so many people.

Deanna C. said...

Ahhh what a great picture and a great moment! Keep up the good work Scarlett. You and your husband are an inspiration of strength. You staying strong helps her. She is feeding off the good vibes. Our whole family is rooting for you.

Jamie said...

yay!!! that is THE BEST prescription yet!! i'm sooo excited and happy that you get to snuggle up closely with that beautiful miss again <3

Jake and Roz said...

My husband asks me for the update on Scarlett every night, and we can't wait for the day when she gets the all clear. You are in our prayers.

Ashley said...

The picture of you holding little Scarlett made me tear up, it's just so wonderful. My thoughts and prayers remain with Scarlett and your family.

-Ashley (Manitoba, Canada)

Anonymous said...

I couldn't help but to cry as I read your story about your baby girl. I can't imagine what you and your husband are going through. Your family is in my thoughts and prayers. I will pray for God to be with your sweet baby girl on Friday.

Prayers from Cincinnati

The Thompson Family said...

Thoughts and prayers are with you guys every minute of every day! What a little fighter you have! She is so very precious!

~Wisconsin

Krystle said...

The whole being afraid of questions is normal whenever anything is wrong with your child. After Peyton's diagnosis of CP anytime someone asked how she was, etc. I froze. I didn't know what to say, but it does get easier. I'm so glad she did so well on her first surgery and I hope the second goes above and beyond all expectations. She's a little figheter & you are being SO strong for her. I'm not sure i'd be able to lift myself off the floor long enough to even breath.

Anonymous said...

I think of you guys daily...and pray for you daily....scarlett is such a beautiful baby girl...I will be praying for God to watch over her Friday.

keri (VA)

Kimberly said...

I was so happy to see the picture of you holding your baby girl. That is the best med ever. I'm also so happy that you are making it such a priority to keep your supply up and keep providing her with your breast milk. I'm sure it is like gold for her little body. I respect you and am proud for you to work so hard at it and be so dedicated. I know how difficult it can be just to have to pump every 2 or 3 hrs let alone going through what your going through and having to do it in the hospital. I'm sure if she could say "Thank You mommy!" She would. The 2 of you are such great parents for this beautiful baby.

Anonymous said...

I wish I could give you each a huge hug and let you know that whatever you are thinking and feeling is okay, it is normal to feel out of sorts when dealing with so much stress.
I am thrilled that you are able to hold your sweet little girl. Scarlett is blessed to have such wonderful parents. So many people all over the world are praying for her complete healing and your strength and comfort.

jellybean78 said...

So glad you were able to hold her today. I can only imagine what you must be going through. Your strength amazes me. Scarlett is a fighter and I hope and pray this next surgery goes as well as the first.

Catherine Soni said...

One of the most precious pictures I have seen!!! Always thinking of you all and always praying too! I am so thankful you get to hold Scarlett...Mommy's are the best medicine!!

Anonymous said...

Just want you to know that we are thinking of you and praying for you in South Dakota--today and everyday! Go Scarlett!!!

Anonymous said...

I am thinking of you and Chris and Scarlett everyday, hoping and praying. We have never met, but I gain so much inspiration from you. Keep your chin up, you are doing a terrific job. This picture made me smile. (And don't worry about not eating well, there will be plenty of time for that later :+)
Love and hugs,
Kira from BBC November 2010

*mom* said...

What a fighter!!! I love this little girl and am soooo happy for you to be able to hold her, even if for just a little. Babies are so smart, I'm sure this little princess knows just how lucky she is to be blessed with such awesome parents. Love Love Love from Tampa, FL:):)

Rebecca {{BBC june2010}} said...

beautiful picture i bet your heart melts to just hold her in your arms.Im thinking of three every single day. She's the strongets fighter that i've ever seen.Keep your head held high and remember to STAY STRONG. {{warm hugs}} and prayers sent your way.I follow this blog and your facebook everyday and everyone from facebook will be wearing red again on Friday in hopes for Scarlett.

MommaKat said...

<3 Best prescription ever!

Angel Girl said...

im so glad you get to hold her! nothing is better for a baby than being in mommy's arms :)

kelly snyder-valdez said...

yes! Best medicane she can get. Brandi, I know it's so hard bc your mind is only on your baby girl but you have to take care of yourself too. Lots of love and prayers from Denver!

Steph said...

So glad to hear it is doctor's orders that she be held like that, I am sure it is therapeutic for you two as well! Thanks for posting an update, I have been F5ing the screen like a mad woman :) Much love to you all!

Jamie said...

I am so glad to hear that she is doing so well. It's exciting to see a picture of her getting to be held! I am praying that surgery will go well Friday and that she will recuperate as well and as quickly afterward as she has thus far. I truly believe that she will get to look at these pictures as an older child. Much love and many prayers.

Amanda and Gavin said...

That is the most beautiful picture, a mother holding her baby. Every touch helps her to heal and every prayer helps her to grow stronger. She definately has our prayers. We are pulling for her here in Layton, Utah! Stay strong Scarlet! With Love ...Amanda, Gavin, and Madison

LeAnn in Fremont, CA said...

A Mommy and Daddy's touch and your LOVE is the BEST prescription ever and is EXACTLY what Scarlett needs the most to gain strength and be completely healed!! Glad to know the doctors know this too! :) I cried tears of joy seeing this picture of you with your little butterfly, she is SO precious and you both have such amazing strength! God gave you a most precious gift of Scarlett and gave her an amazing gift of two wonderful, tender parents with the both of you! I continually think of the three of you throughout each day and I pray for a time when you can be home again, not alone, but the three of you again as a family. <3 It is natural to feel as you do and natural for people to be curious but you only need to do what is BEST for the three of you right now and people will understand--God will be sure of it!! I know these next couple of days leading to the surgery are going to be filled with a lot of different emotions- so we'll be praying that your anxiety is kept minimal and the love, joy and excitement you feel is multiplieda thousand fold!! Hang on Brandi and Chris...the finish line is getting closer and we're your biggest cheering section! Enjoy each snuggle with her..it's the best remedy for you and sweet Scarlett! Much Love and sending a multitude of blessings your way---The Resh Family in Fremont, CA~ LeAnn, Mike, Michaela & Landon

kellyswhit said...

Awww....Mommy's healing hands and touch is the best medicine! What a fighter!

Bonnie R. said...

As the mom of a child who was born 4 months premature, I understand how you feel. Even though it's been nine years since my son was born, I remember like it was yesterday how surreal the world outside the hospital felt. Strangely, I felt more "safe" inside the hospital than out of it. I was so glad to hear that you got to hold Scarlett! I am sure that it has done wonders for both of you. My nine year old son, Ben (yes, he beat all odds and is a happy and healthy boy!), and I continue to keep Scarlett and your family in our prayers! -Bonnie, BBC August 2010

Anonymous said...

What a treat that prescription is! That is good for you all :) I am so happy so see you holding your little Scarlett and know that you both are feeling better from the simple act. You are in my thoughts and prayers.

Love once again, a July BBC Momma!

Anonymous said...

I'm new to your story and am so in awe with you and your precious baby girl. She is such a little fighter with more strength than many adults I know, myself included. While I know this is extremely difficult, you always seem to handle yourself with such grace. Please know that you are all in my daily thoughts and prayers.

Kelly Jo said...

That is a lovely picture of you two! Always praying for Scarlett! God Bless You and Your Family.

Anonymous said...

So glad for the update. About the nursing, don't sweat it if you can't get her to latch. You can successfully pump enough for her with the right pump. I have exclusively pumped for two children well over 12 months each. Sometimes it's what you have to do.
Blessings to you all.

Anonymous said...

What an awesome sight! I can only imagine what a great feeling it was to have your little girl in your arms again. You all are in my prayers every day.

Anonymous said...

Your blog is the first place I go every time I pick up my phone.
I hope that the love Scarlett gets from her family and
So many people around the world will make her even stronger and she will
Come out of this as a healthy girl.
God help you. Be strong little kitten! Keep fighting!!
Thinking on you all the time
Julia- Tampa

Mary - BBC Nov '09 birth board said...

Brandi, your strength is indescribable! Yours and Chris' both! My heart breaks but leaps with joy every time I read an update. God gave you such a beautiful gift, and her name is Scarlett! You carry the weight of the world on your shoulders for your tiny baby girl. I don't know how you do it, but I admire you so much for your determination. I continue to pray for your beautiful butterfly and for the two of you to stay strong for her. I think her prescription: being held 30 minutes 3 times a day, is good for you too. Always thinking and praying for your family. x

Anonymous said...

Scarlett is so lucky to have such strong parents and such excellent medical care. I think about you all daily and pray for everything to keep going well. Keep fighting Scarlett, you have lots of support all over the world. Praying for you in Buffalo, New York.....

cdub5213 said...

My heart goes out to you. I can't wait to hear good news this weekend.

Anonymous said...

We are thinking and praying for you in Austin, Texas. What a great photo. Brandi - if you want a big mac and fries - go get it girl! Do not stress about what you need to get through all of this. I can't imagine trying to grocery shop and be healthy during this time. Make things as easy as possible for yourself. Its the least you can do. We love you and your family. You are doing an amazing job! Scarlett IS going to beat this. She is! Keep fighting Butterfly! All of our prayers are with you and the doctors.

Anonymous said...

I found you through BBC. I heard this on KLOVE tonight and thought of you and scarlett!!!!
http://www.youtube.com/watch?v=uCCx380NTq0

The Morris family is praying for you!

Christina said...

Give her extra snuggles from Kaitlyn and myself. We love her dearly and think of the 3 of you all the time.
Stay strong, Stay brave, Keep fighting.
We are rooting for our little butterfly!

Anonymous said...

She is such a beautiful and precious baby. I pray for her everyday.

Anonymous said...

What a beautiful Picture! Try to keep up with eating well, your baby girl needs you to be strong and healthy! Praying for you and Scarlett every day. Will be praying unceasingly on Friday.

sweetchildo8 said...

You and your amazing little girl are in my thoughts. God Bless you

Daisy said...

Your love is the greatest medicine. And yes, keep up with your pumping. Your BM will be the best food for Scarlett. Lots of love.

Simone said...

You have such a little fighter in Scarlett. And I don't know how you are staying so strong for her as I would be a complete wreck! Keep it up, it'll only get better from here on out. Will be thinking and praying for you, Chris and Scarlett on Friday. Love coming your way from South Africa xx

Minda said...

Sending huge love, healing white light, prayers, and warm fuzzies to your precious strong amazing baby girl.

Anonymous said...

That picture just warms my heart and brings tears to my eyes. Being held: what a wonderful prescription to have! Hugs and prayers for Scarlett and your family.

Anonymous said...

I think and pary for all of you everyday!! I am so happy to see the new prescription is to hold your baby girl, what an amazing feeling that must bring to you both!! Lots of Love and Prayers for you all, GOD Bless : )

Anonymous said...

So glad she is doing so well, praying for you & Scarlett, I have faith that tomorrow's surgery will be as successful as the first one! God bless you guys! ((hugs))

Anonymous said...

Prayers for your family. It is indescribable how incredibly much your story has touched my life. You are the strongest people that I know, and I've never even met you. Scarlett is an amazing girl who is meant for something big in this world!

God Bless you!

Anonymous said...

Your picture is amazing, it is so nice that you can hold her and she can feel her mommys touch. Your family is in my daily prayers, good luck with the surgery Friday! May God watch over you all! the Franks Family

Michelle said...

My family will be thinking about your family tomorrow. Sending prayers from NY.

kourage said...

think of your beautiful little girl every day and pray for her every night ! my thoughts and prayers are with you and your family !!!