Monday, January 17, 2011

Eating

Not much has changed today for Little Miss.  She began on NJ (naso-jejunum) feeds of breastmilk last night, and today has been cleared by OT to eat 1 oz. every 3 hours by mouth.  She chugged the test bottle so fast, the OT felt bad she couldn't give her more.  We have to ease her into full feedings, eventually maybe nursing, because she may have trouble swallowing and breathing while she eats and could choke.  We can't sit her up to burp her or to clear her if she chokes, so we have to start slow.  But, slow and steady works for me!

Someone here on the blog gave me a tip to Google "breastmilk HAMLET" and it was astounding!  A recent study from Sweden showed that a compound in breastmilk, when passed through the infant digestive tract, can kill cancer cells.  It was specifically tested on the type of tumor Scarlett presumably has (we're still waiting for the pathology report to confirm).  This has given me a renewed energy for pumping...if it helps to kill the cancer, I will do it for the next 5 years.  Even if it is a long shot, I'm on it.

As for momma and daddy, we're eating well around here.  If you're not from the Bay, you probably have no idea where we are.  Even though we both grew up locally, the hospital's surrounding neighborhood is new to us.  We are right on the edge of Oakland and Berkeley (across the Bay from San Francisco).  There are great restaurants just a short walk from here, and we continue to explore as we can.  The hospital food is lacking, to say the least.  Children's Hospital = children's food.  I've been living on chicken fingers, quesadillas, tater tots, burgers, pizza and broccoli for good measure.  When we go out, we try to get real food.  Our favorites are Genova Deli, Scream Sorbet, and Bakesale Betty.  There is also a Whole Foods Market not too far away, so we get some goodies there too.  Hopefully we'll get to more soon!  

54 comments:

New Zealand said...

It's so good to hear she's doing well.
She's a trooper, that's for sure.
It must be hard leaving here there.

Michelle said...

Brandi,
My husband and I are staying updated with Scarlett's progress, and I am so thrilled that she has beaten the odds thus far. We continue to pray each day for her :)
Michelle Oct 2010 BBC

Kendra said...

I am so glad she is doing better. So glad that you can give her breastmilk.

Anonymous said...

It's so wonderful to hear how much she's improving. What a strong little girl! Thank you for the updates - we're thinking about Scarlett every day.
- Sarah (BBC Nov 2010)

Anonymous said...

Sounds like little Miss Scarlett is ahead of schedule! That's great!

I know what you mean about the hospital food. I spent 21 days at Children's Hospital in San Diego with my then 2 month old son and lived on kid's finger foods! Of course I was grateful that they fed me, but 'real' food sure tasted much, much better when we went home! :)

Hoping that Scarlett continues to recover quicker than expected.

We will continue sending love, prayers and hugs from So Cal! :)

Anonymous said...

hopefully this is the begining of a new road to recovery and for baby scarlet to get stronger and leave all this behind, praying for you and your fam. :)

Anonymous said...

I am soo happy that baby girl is doing good! I am saying my prayers for Butterfly and for you both also. I think that Scarlett getting breastmilk is so good and I breastfeed my baby too. God Bless Scarlett and her parents and please know that so much love is being sent to you from Boston, MA!
Stay strong babygirl and Brandi and Chris, you guys are fighters : )

BBC Noelle
July 2010 Birthclub

Sandy said...

Always suspected breast milk was the miracle food. All natural made especially for human babies. Can't beat it! Even better reason to keep your supply up.

kerriwike said...

That's amazing about the breast milk, I've also heard that it decreases your chance of developing breast cancer. I bet Scarlett is thrilled to get some good momma's milk again! So happy that she's doing so well, I've been checking your blog everyday (multiple times) and praying constantly! Thank you so much for taking the time to update!

Paula said...

Wow!!! been waiting for good news all day long.
Tks for remember us :).
it's so goods, but still more to come, I'm sure.
Come on little butterfly!!! go on a full recovery.
Much love from all my family. xoxo

Amy Beth said...

I just want to say that I feel for you with the pumping situation. My baby girl wasn't able to latch on correctly, and I pumped exclusively for almost 3 months. Its hard work! Exhausting and frustrating and draining... but to hear things like that (you know, that it helps fight cancer) then its totally worth it!

We're still pulling for Scarlett. Keep on keepin' on!

Shannon said...

Wow, that's awesome about the breast milk! Keep pumping as much as you can, hopefully you have a hospital grade pump.

So happy to hear positive news from Miss Scarlett! :)

Katie said...

We're praying for you. Scarlett sure is a strong little girl. You're all so strong and amazing...keep pumping!!! :)

Katie (June 2009 BBC)

Connor's Mommy said...

Wonderful to hear such great news! Looking forward to many more. In the mean time, we'll keep praying and sending positive thoughts.

Carter Clan said...

I am glad she is doing better!! You are all in our prayers!

Mom2Twins said...

Keep on it Momma! You are doing awesome!

Anonymous said...

Each day is significant progress, though it may not seem so. She amazes me! Simply amazes me.

And it's odd about the food 'these days' because 28 years ago Children's Hospital had the best food of any other hospital I'd been to. I used to devour it... everything else was cafeteria food.

Robert said...

It is so wonderful to hear such a cheerful tone in your latest post! Miss Scarlett is simply amazing and it will be so fun watching her grow!
You are an outstanding mama, I truly admire your strength and courage.
Keep on pumpin! :)

andrea said...

Oh goodness, that last post was from me but I guess I was on my husband's gmail. Oops
Didn't want you to think someone named Robert was telling you to keep pumping....hehe
Once again, your family is in my thoughts every single day!
Andrea

LeAnn in Fremont, CA said...

So very happy that she progresses more and more each day....simply amazing and wonderful news to hear! I was gone and away from my computer this weekend and I couldn't WAIT to get home and read how you are all doing! So glad that you two are able to go out and explore a bit..that's got to be a help to your emotional state even with all the great things that continue to blossom...i'm so thankful to the Lord that He has heard ALL our prayers and answered them with the greatest of miracles!! Thank you Brandi and Chris for your willingness to share your story and letting us all see the progress that sweet Scarlett continues to make! My prayers and thoughts continue to be with you and I look forward to all the miracles we will witness in this sweet baby girl and in your lives!! Sending all our Love xoxo, The Resh family~ Mike, LeAnn, Michaela & Landon <3

Anonymous said...

Goodness, it is amazing to hear that things are going so well for you guys! Little Scarlett seems to be making leaps and bounds for progress! I will continue to send good thoughts your way!

-Love to you all, once again!

Anonymous said...

I love the information on breast milk. My fourth had some trauma when he was born and was very weak and couldn't feed. He had the NJ tube too. Until my milk came in he was getting formula. He did NOT improve until my milk came it. Within an hour of getting the first full 2oz of BM he became alert. He improved after each feeding. I swear by BM. So now I pump extra and give it to my toddler who has developed asthma. I will keep praying for your little butterfly!!! She is a huge blessing to you and even all of us who are following you guys. Much Love, The Linder Family - Dennis, Summer, Caitlin, Michael, Madeline and Alexander.

Anonymous said...

I'm so happy to hear that she is making progress! Lots of thoughts and and good vibes coming to you from Southern California. Thank you for the updates.

Anonymous said...

I have been following your blog and I am so thrilled that Scarlett is fighting through all of this! You and your husband are so amazingly strong, and that beautiful little girl is a fighter for sure!! I will continue to pray for your family, for a full recovery and many happy days ahead =)

[and being born and raised in the Bay - I must agree, Genova Deli = LOVE!]

Melissa
WTE August 2010

Irene K said...

Keep Pumping! So glad to hear Scarlett is gobbling up her milk, you guys hang in there we are all cheering for you!

Karen said...

Wow! This is a tough little butterfly! She is a fighter for sure. Take care of yourself too, so you can keep feeding her your miracle food! There is lots of info out there on keeping supply up when pumping exclusively. Sounds like she loves her milkies :)

Katie T said...

Go Scarlett!!! I'm soooo proud of your little fighter! I'm so glad to hear you two are able to take a stroll every once and a while to be with each other. Again, so proud of your daughter. She's got an admirable spirit.

hamblenarmywife said...

way-2-go Scarlett. Hope you can feed her your brestmilk for 5 years too if thats what it takes to keep her healthy. Still praying for you three and the docs. Keep fighting babygirl you've come a long way.

Misty said...

Try La Calaca Loca and Lanesplitter Pizza. Both are in Temescal. We miss them now that we live in the Seattle area. Glad to hear the updates!

Kimberly said...

Totally makes sense about the breast milk and you are such a good mommy for be so dedicated to it. I have always had the opinion that breast milk is like gold for their little bodies. So glad to hear that she is doing so well.

Anonymous said...

The hospital is usually a lot like a cafeteria in school. I would suggest getting a book from the store on Microwaving meals from Cafeteria food, like Tray Gourmet. It is surprising what you can make with what they will give you! Also, Trader Joe's has shelf stable Indian food.

Kelly said...

Prayers & hopes all the way from Buffalo, NY!

Anonymous said...

Scarlett, girl you are amazing!! You inspire me and amaze me with your strength!! We are still praying for you and your family. And are gald to hear that you are doing better and the tumor has been removed sucessfully. Lots of Love and Prayers your way. God Bless!!

Love,
The Jasso Family

jellybean78 said...

So glad she's making such great improvements. I pray she continues to improve every day. She is so lucky to have parents that fight so hard for her. I have said it before, but your strength amazes me.

marsha said...

so glad to hear more good news. i know it's still a long road ahead, but it seems little scarlett has come so far. i'm still keeping up with the blog everyday and i thank you for taking time out to update us. as always, still sending love and good thoughts to your family.
Marsha
BBC Nov 2007 & Aug 2010

Pirates' Mama said...

Glad to hear she loves mammas milk! I'm so happy that she is doing well and pray every night for your little princess!

A.wesson said...

I love this post! You sound so positive! Keep it up mama bear!

Anonymous said...

Great news. I just read through the entire blog and am cheering baby Scarlett on.

Tara said...

You are doing an amazing job Brandi and Chris! Scarlett is suck a strong little fighter, we are praying for her to continue to improve leaps and bounds. Glad to hear that you are guys able to find some decent food nearby! Lots of love,
The Poor Family

Anonymous said...

So glad to hear of the continued progress of little Scarlett. She is a true miracle. Still praying for you all and wish your little family better days very soon!
Melissa
August 2010

Lara said...

I've just come across your story thru Baby Center, and I just wanted to say I am praying for you and little Scarlett. The trials and tribulations are great, but you seem very strong and Scarlett sounds like such a trooper!! So happy to read of the tumor being gone, and here's to a healthy recovery, slow and steady if need be. You have so many people following your story and so many prayers lifted on your behalf. Prayers can make miracles come true!

Morna Paige said...

Try Rudy's Can't Fail Case on Hollis and Park, it's across the street from Pixar, you can't miss it.

Anonymous said...

Thank you for continuing to update. Scarlett has been in my thoughts and prayers these last few weeks and every bit of news is so encouraging. I'm so happy about her progress. Keep it up Scarlett!!
Love,
Heather
(BBC July 2010)

Anonymous said...

Please get a Speech Path to come and do a swallow study to test her swallow! An OT is great for teaching/re-teaching a swallow but only SLPs are specialists in dysphagia (swallowing problems)! Demand a modified barium swallow (non-invasive, just like an xray) so you know she's eating safely! This is my specialty in NYC - and Drs don't always call us in in a timely manner!!
Praying for Scarlett and your family!!

Lindsay Fletcher said...

I'm so excited to hear the good news. I've been praying hard for all of you. So happy!

Daisy said...

Yes, a healthy mama produces even better breastmilk. My ped is always dismissive of people making a blanket statement of BM being best. If a BF mama eats rubbish, this affects the quality of her milk too. So I am religiously taking my pre-natals, omega 3 (good for the baby's brain) and calcium. Try to get some of these! Sending lots of love.

MamaLamb said...

Thanks be to God! Brandi, keep up the good work!!! What a miracle Scarlett continues to be!! Prayers for the three of you!

jennifer said...

It's so great to hear that little Scarlett continues to have progress.. no matter how slow it is!!! We're still all rooting for her every day!

There is some REALLY yummy food in the Oakland/Berkeley area. If you want to trek over to North Berkeley - Cheeseboard has the BEST pizza ever. Also, on Telegraph/Durant near campus there are a ton of great places: Smart Alec's, Top Dog, Thai Basil & Gypsy's.

Big hugs to you all!!!

Jill said...

Your daughter is so strong! I'm thinking and praying for her everyday. Hugs to you all.

Jamilie said...

Scarlett is such a fighter! Praying it all continues to go well for her! Kudo's on the BM! I Exclusively Pump, so you can do it! Store as much as you can!
Crazy I know what area you were in, went to CA last April/May.. we even visited the Berkeley Campus and ate there in Oakland...Saw Sacramento, SF, Oakland, onto Yosemite..
{{Hugs}}
Prayers from Atlanta! ;-)

Anonymous said...

still praying for Scarlett e/day!! And know that with God all things are possible!! She is so precious...

BBC keri

Anonymous said...

This story is truly a story of awesome nature!!! I am so proud of Scarlett, and Mom and Dad for being so strong! I am seriously in awe of how awesome y'all have been through this.

My husband and I are following your story, and sharing it with our 3 daughters at dinner time. My 5 year old "knows" Scarlett by name now, and prays for her during her prayers. She also put in a special prayer request at school!

Continued thoughts and prayers to you and your family!

BBC Tonja' (3girlsfun)

Amanda O'Gorman said...

She was missing mama's milk! Glad to hear things are going so well!

Anonymous said...

I've just read your entire blog. I cannot express how much love I feel for your precious Scarlett. She sounds like quite the little fighter! Bless her heart. Praying for you guys and that your milk supply will continue!