Julia's toes

Grammie Jen has this update:
Nightly news on my little sweet pea.
My girl is such a fighter and trooper! You could see she was in pain by her eyebrow furrow today after her tracheotomy yesterday, first we mess with the back of her skull and now the front of her neck.
She responded to my kisses and song and wiggled her toes! Wow that was so cool! Daddy got her to do it a bunch more too! She gained two pounds since they started the tube in her duodenum. She is definitely a fighter and a miracle.

Every one of you has helped get her to this point and I am so happy that you will be with us on our journey to Oakland on Monday and to the surgery Wednesday! We now know that the surgery is not 24 hours but as long as it takes which probably will be about 12 hours or so. Much better than what we were thinking!!!
Carrie and Glen had dinner here and put Amanda to bed again which is good for us all! We will figure out Oakland as we go! I am sure it will be a change but we will get into the swing quickly!
Enjoy your evening my dear friends and sleep with great peace and know what amazing things you are a part of!
Much love,
Grammie Jen

Meanwhile, Nona (Carole), who was with Julia while Carrie and Glen were spending bedtime with Amanda, reports: "Tonight she is quiet. I gave her a bath and a baby massage.  She fell asleep when I played her daddy reading her a story and her mom singing the moon song. She looks peaceful now."

This is one very loved little one! 

Grammie's Update

My little sweet peas nightly update! As many of you already know my little one had surgery this afternoon to put in a tracheotomy . It was a successful procedure but hard for all.
Julia had her eyes open this morning and seemed to be so close to breaking through the curtain that is separating us. It seems to her mom and I that as she moves forward we do something else to her! Of course we know that it is to help move her forward but it is still hard!

They are moving her to Oakland on Monday and her big surgery will be on Wednesday. It is where we need to be but of course we are comfy here and it is hard to go to a new and unknown place. I know we will have support there but change is tough!
Carrie and Glen came over to my house for some dinner and bedtime with Amanda. That was good for all of us! We are ready to see what tomorrow will bring!
Julia listened while I told her about all of you who love her and are sending lots of love and prayers. I think she felt you all and knows that you are here for her.
My friends I can't tell you often enough how much I love you and appreciate all that you are doing for Julia and all of her extended family!
Bless and love to each of you
Grammie Jen

Out of surgery

They just wheeled Julia back. They said it went well. Carrie and Glen can see her in about 45 minutes.

Surgery Today

Just a quick update. Carrie wanted everyone to know that Julia is having surgery for the tracheotomy today at 4:30. Having the trach will be much better for transferring her to Oakland and for being under anesthesia for the long surgery, so this is a step in the right direction. They will wait to do the feeding tube until after the big surgery.

Smiling Girl

Carrie and I spent some time today sorting through some of the many adorable pictures of Julia. It is wonderful to see her vibrant, smiling face. Here are a few of the favorites.

Nightly Grammie Report

Nightly Julia report! My little sweet pea has an elevated white count and we don't know why, but she looked great and her eyes were open a lot. She seemed to track me and knew when I was singing and kissing her etc. I just know that she is just trying to see around that thin curtain!
Carrie and Glen came to dinner with Amanda and us again tonight which was great! One of my neighbors made a tuna casserole which all loved(except me and my hate of hot tuna!) But it was wonderful for all the rest! The neurosurgeon called as we were finishing and said that he wanted to do the trach and stomach feeding tube tomorrow and move her to Oakland Monday for surgery on Wednesday the 14th. We were all shocked and not sure if it will move that fast due to her elevated white count.

I was surprised to hear that the surgery will be at least 24 hours ( I thought 12 was a lot, but they will have at least 3 pediatric neurosurgeons to rotate as they perform the surgery.) Anyway, we are again in a bit of a whirlwind and not knowing quite what to think or feel.
You all have been so supportive and wonderful with your prayers and thoughts. I am so happy that you are on this journey with us. We need you!!!
Will let you know what occurs tomorrow.
Love to one and all!
Grammie Jen

Grammie Jen

Grammie's Update

My sweet peas update!
My girl pooped twice today and was definitely keeping her eyes open a lot! She responded to my singing and kissing every toe and finger! We were hoping to remove the ventilator but she isn't quite ready for that and they will reassess daily! They have the stomach feeding tube and trach(possibly) scheduled for next Wednesday. So many of your prayers and thoughts are uplifting us and we just know she will push aside that twilight curtain and wake up soon. I can definitely feel her there. Carrie and Glen and Amanda are holding up remarkably well. We walked to a library about 1 1/2 miles from the hospital and checked out books and found out when programs are that we can take Amanda to are scheduled. It was lovely to get out and enjoy the beautiful unfallish day!

I tell her every day about many many of you and how you are sending her such love and prayers! The nurses sometimes hear me and are ever so impressed!
Keep it up my awesome core if wonderful people and your awesome extended friends! Each and everyone of you is blessed and blessed (same spelling but the second one is said bless ed!)
Love you all
Grammie Jen