Wednesday, January 19, 2011

Moving On Up

Yes!  We are currently awaiting our big move back to the regular floor, out of ICU!  We have been in ICU for two full weeks.  I know that many families were here before us and will stay much longer, but we are ready to bid this place adieu!

Scarlett continues to amaze everyone.  She is eating by bottle every few hours in addition to NJ feeds.  She is down to just her PICC line, which can be used for all her medicines, as well as to draw blood for labs.  The big news yesterday was that both cerebral spinal fluid drains were removed.  These were tubes that were stitched directly into her skull that drained excess fluid.  She is circulating and absorbing fluid well on her own for now, so they decided to remove the drains so that we can hold her and feed her.  She may still need a shunt; they will decide later this week.  She's not a big fan of being held much right now; I think she is uncomfortable being moved.  However, we'll ease her back into it!  

Now, she is stable and ready to be moved up to the floor, where the care is less urgent and there is much less drama.  We will be able to eat in the room, make phone calls and have more than one visitor at a time.  Whew!  It's been so confining in ICU, for Scarlett and for us, even though we started cheating with snacks and texting a while ago...

I realized that we have a lot to adjust to once we are more responsible for her care again.  We haven't had to wake up in the night for much in the last two weeks.  We haven't had to feed her on demand, or even do obligatory breathing checks like we used to.  Taking home a "sick" baby may be much more difficult that living in the hospital.  Nevertheless, I want to take her home, let her snooze in her swing and get her toes licked by our dog.

57 comments:

Danielle said...

I am so happy that she is moving out of the ICU! I will keep you, your husband, and your beautiful girl in my thoughts and prayers. The strength you all have shown through all of this is amazing.

Hilary said...

so glad to read such a happy update!! I hope and pray that this will all soon be a distant memory. Thank you for the post - I was jonesing for a Scarlett update!

Anonymous said...

Your daughter is just amazing!!!! You must be feeling relieved to be rid of PICU for now, and to leave the 'twilight zone' for a more normal existence (albeit with a sick baby). Welcome back to the real world! Stay strong! Love you guys,

Terri

Jennifer said...

Great news and amazing progress! This wonderful little girl just never stops jumping over hurdles with leaps and bounds.
I hope she is home soon, getting her toes licked by the dog too! No better place to be!

Sheila said...

That's great news!!! Way to go Scarlett!!

Jessica said...

I am so excited for you and Scarlett, she is amazing. It is so great to hear about her progress and how well she is doing. I have this blog saved in my favorites and check it numerous times throughout the day, I love that it has been such good news lately!! Keep it up Scarlett!!!

Anonymous said...

Just heard about your update on our BBC board. What a wonderful post! I'm so happy for you guys and so thankful that things are going well. Scarlett is absolutely amazing -- such a fighter -- and I can only imagine your sense of joy and relief right now! :)

--- Rachael M. (NOV 2010 BBC board)

Bandia12 said...

Oh my goodness! I am ecstatic reading this. Little Scarlett is such a rockstar! So glad that she is doing so well. Keep fighting baby girl, and enjoy your regular room :).

Kendra said...

I am so excited for you guys.

Anonymous said...

Congratulations on your move and I'm praying for a move home very soon. Although it will take some adjusting, I know you guys will be happy to wake up with Scarlett in the middle of the night in your own home! Parents around the world are finding it easy to quiet an upset child at ungodly hours because of your story. Thank you so much for continuing to keep us all updated. Much love and many prayers heading your way from MI...

Kristin said...

What an amazing little girl! I am so excited to hear the good news.

Paula said...

Ohhh tears in my eyes!!!!! How happy we all feel!!!! Scarlett is AMAZING:), what a fighter!!
Dancing the happy dance right now. You made my day!!!! Congrats on a new start!!! The three of you are in my prayers.
xoxo

Rebecca {{BBC june2010 mommy}} said...

A-M-A-Z-I-N-G its all I ever think when I think of little Miss Scarlett. She's so very strong. Way-2-Go babygirl. Congrats on her overall progress hope and pray she continues to do well. Im sure you can't wait to get her home might be scary at first but you'll fall into a routine that will just come natural from being such wonderful, and caring parents. Good luck and thanxs for the update. Love you guys!! {{warm hugs}}

Amy Biagini said...

So wonderful. My thoughts drift to Scarlett and you guys so many times during the day. She is quite an amazing little girl.

Anonymous said...

this news has just made my day... been checking for updates and getting nervous.. SO happy for you guys! God bless you.

April and Roel said...

Fantastic! You go, Scarlett! If anyone can take care of Scarlett when you head home with her (hopefully soon!), it's you two. You're such devoted parents.

Lukes Life said...

Ive never commented but Ive prayed for Scarlett. Im so happy so is doing so well. Its amazing and so is your and your husbands strenght!

LC said...

So happy for all of you. I hope you get to take Scarlett home sooner than you think. Taking care of a sick baby is hard, but it's so nice having them home. Best of luck to you. We will continue praying through the many weeks and months ahead.

Anonymous said...

Wow such a little miracle she is! As usual I cried reading your post. I cannot even imagine what you are going through but I remember when my LO was in the NICU(for something far less than you are dealing with) they moved him to a step down unit and it was so much nicer to eat in the room, use the computer etc. Congrats to all of you. Still sending prayers from PA.
Amy-BBC January 2010 Birth Club

Sandy said...

Great step. So encouraging. All good thoughts and vibes heading your way.

Anonymous said...

Many times throughout the day I think of you all and pray that things continue to go well...I am so happy to be able to read an awesome update like this! My family and I will continue to pray for recovery and strength so that baby Scarlett will be able to go home with you all soon! Love, James, Jennifer and baby Noelle!

Heather said...

What amazing progress she has made! You must be breathing a huge sigh of relief! I know we are!

Anonymous said...

Way to go Baby Girl! Love and prayers being sent from Austin!

Anonymous said...

This was just so cool to read. It must feel so good to know your baby girl is so strong. I know I love seeing her do so well. Like you said a few days ago, it's a long road ahead of you, but Scarlett has already shown how strong and resilient she really is. I pray that she stays that way and that she continues to amaze everyone with every obstacle she meets. God bless your sweet baby girl!!

*mom* said...

Caring for her at home will be a breeze compared to what you have been through!! Okay, the night time wake ups aren't always fun, but I'm so so so sooooooo excited that you'll be doing them again soon:) Congratulations and way to go being an awesome mommy:):)

Anonymous said...

I love the last part in this post about letting the dog lick her toes! Such a simple thing, but just thinking about that put a smile on my face because that's on thing our dog loves to do to our little girl. Best wishes to you and your family!

Sylvia said...

Oh Brandi and Chris,that is such wonderful, wonderful news! She is one tough little fighter! Praise God for all the progress she is making, he is definitely watching out for her. Can't wait until the day that we hear that you do get the green light to go home! We will all be celebrating with you! Not in the too far off future I'm sure. We are so happy for all of you! Great News, great news!

Anonymous said...

This is GREAT news!!!! I am so happy for you and Scarlett! She'll be home before you know it. I can see Scarlett running around soon, making up for all this time.

I continue to pray for your family and Scarlett.

Leslie (August 2010 BBC)

Anonymous said...

O thank God! I am so happy to hear this! i am so happy for you all! I am totally rooting for Scarlett the littlest butterfly, and you are all in my prayers. I have told my family about Scarlett and they are all sending their love and prayers to you all.
Go Scarlett Go! You are so strong babygirl :)
Brandi and Chris, you are so strong too. I am just SOO HAPPY! Yay!
God Bless you all.

Noelle- July 2010 BBC

Jessica/ BBC Oct 2010 said...

Amazing! Im so excited for y'all, that Scarlett is doing so well. Prayers continue for your Butterfly.

Anonymous said...

That is truly the most amazing news!!! What an amazing little girl she is! She I going to do something pretty special with her life when she gets bigger! Such a fighter! She has no idea how many lives she's touched and what an example she is to us all! Way to go Scarlett and way to go mommy and daddy! You are all amazing! Keep up the great work!

Anonymous said...

WooHoo! Go Scarlett! That is such wonderful news. She is one tough little lady. I continue to check in every day to see how she is doing. You guys continue to be in our prayers. Praise God for the miracle that is your sweet daughter :)

RLC said...

Hooray! That is so wonderful to hear! I think of you guys everyday with love and prayers <3

Melissa said...

What an amazing update! So happy to hear that she's doing so well! I will continue to keep her in my thoughts and prayers - what an fighter little Scarlett is!

Mom2Twins said...

I remember when my son got moved from ICU to the regular floor... I was so scared. But it's was so awesome. Congrats!

jenip said...

Congrats! What a great update :) Scarlett is such a little fighter. Stay strong baby girl. Love & prayers from Ohio. Jen, John & Landen

Anonymous said...

My son has had four open heart surgeries... his first was when he was only 6 days old. He wasn't a big fan of being held at first either because he was so sore and didn't like to be moved. What the nurses had us do was to sit with a pillow in our lap and then they laid our son on the pillow. It allowed us to touch and be near to him, BUT allowed him to be more stable which he was more comfortable with. You might want to try that for Scarlett! Prayers continue!

Haley Norman said...

God has such HUGE plans for this little girl! I just know it :)
Congratulations on all the progress!
Prayers are still being said from here in Oklahoma :)
We love you, Scarlett!
Haley, Quade and Hadley Notman

Renee said...

You guys are so awesome. I just love your writing!

jellybean78 said...

I am so happy to hear of her progress! Thank you so much for keeping us all posted. :)

Christina said...

Congratulations and way to go Scarlett! I have been waiting for the day that you can take her home and she can see her room again and that crib she did not get to use yet. It will be hard, no doubt, but more comfortable for you all. Keep pumping that liquid gold for your butterfly! You can do it!!!
Be brave, be strong, keep fighting
Kaitlyn says hi <3

Pretty in Pink and Camo said...

Such wonderful news! Thank you for sharing! Our family keeps yours in our thoughts and prayers everyday :)

Baby Sheena in the Making said...

I found your blog through The Bump and am in tears after reading your story. I can't even imagine what an emotional, heart-breaking situation you have been faced with! Scarlett is such a brave little girl. I am going to be praying for your family and for Scarlett's continued progress, healing, and strength!

Anonymous said...

I am so thankful for the wonderful news! I've been praying for beautiful Scarlett and you guys as well. Thank you for the update I will continue to pray that everything continues to go so well. :) Blessings to you and your family you are truly amazing people.

Anonymous said...

What great news! So happy to hear it!

Anonymous said...

God is so good! I will continue to pray for her continued recovery & for strength for you & Chris as you adjust to the new type of care she will need. I am thankful that God has provided skilled doctors, nurses & therapists for Scarlett. I pray that the social workers will be able to arrange all the types of services that y'all need to continue her care. I am thankful of the miracles that GOd has provided & will continue to work in Scarlett's life. She is truly an amazing gift & God has special things in store for her. Her life is a living testimony to the miracles that God works today. I hope that your faith has been strengthened during this journey for God is a wonderful healer & provider for all the things that we as his children need. I am sending prayers, blessings & love to you from ALabama. Keep the faith & keep praying for guidance & strength for he will lead you & provide a way. Keep pumping that life sustaining, healing food that only you can provide momma, GOd made it from you just for Scarlett with all the things that she needs. Keep on blooming little butterfly, you can do it!

Daisy said...

So happy to read this. Will continue to pray for you and your family. You are such a great mommy. That's why Scarlett is such a little soldier!

Imperfect Me said...

You, Chris and gorgeous baby Scarlett continue to amaze and inspire me. Congratulations on the move! One step closer to bringing your butterfly home. Much love xx

Hastings Family said...

WOOHOOO!!!! What a trooper. :) Congrats on getting to the next step closer to getting her home, safe, and healthy. I just started following your story and it is amazing to see how much strength you have with her. Praying that she continues to do well and heals fast.

amanda said...

this is the first i have read of your little angel Scarlett ! she is so beautiful and i can't even imagine the way you feel i am sure its mixed emotions but i can tell that your staying positive and i am sure she senses that :)... i am so glad to hear that she is doing better ! i wish you all the best and i will keep your family in my prayers this is truly an amazing story ! much love !! xx

Bonnie said...

My Elijah spend his first 10 weeks in the hospital and everyone would always says, "I bet you can't wait to get home. You must be so stressed." And yes, I couldn't wait to be home with my baby, but the hospital was a breeze compared to having a sick baby at home! While in the hospital I could sleep through the night (except for when I had to pump) and I could spend all day with him and know that he was in good hands if something went wrong or if I needed to leave to eat or pump or whatever. After he came home there was not much sleep, no time to pump or eat, and I had to go back to work after only two weeks. But even as hard as it is, I would not change him for the world. I know you feel the same about your Scarlett and I am so happy to read that things are going so well for your family.

Anonymous said...

Truly Amazing!! Scarlett is such a storng little girl and you both have been blessed to have her as yours. Still sending lots of prayers your way from Arkansas. Lots of warm hugs and love!!

Love,
The Jasso Family

shynek said...

Oh, I can't wait for her toes to be licked by the dog either!!! So sweet!!!!
Go baby go!!!
xoxo

Anonymous said...

I woke up this morning...took care of my baby and said "now to check on Scarlett"...what great news...she's so awesome...keep up the good work and I can"t wait to hear that you're taking this cutie pie home soon...

Kimberly said...

Amazing news! I am so happy for you guys. I know the path ahead will be very hard, but God will continue to lead you through it.

Still praying!

Mary - BBC Nov '09 Board said...

What a miracle she is!! She is truly blessed by God! I am so thrilled at her progress. But she cannot talk all the credit. She has two simple AMAZING parents that didn't give up 1/2 of a second on her! You two, Brani and Chris, are her rocks. I am so happy for your family, I am tears right now. I don't know you from Eve, but I love all of you. Go Scarlett GO!! xx <3

Amanda-BBC Oct'10 Board said...

you are AMAZING parents and your daughter is AMAZING! I am so inspired by your strength and continuous optimism. That is what Scarlett needs. We are all rooting for you Scarlett!
My son was born only 10 days after Scarlett. <3 Love you scarlet!!