Sunday, March 31, 2013

baby's first easter.

 This was taken right after Charlotte's bandage came off this Easter morning.  Her head looks perfect and round.  (We think it looks like Eleanor's head now... and not just because it is bald.)
Like my Easter dress?  Since Charlotte is only wearing only blankets this weekend,
we decided that this one is her Easter outfit!
The best news is that we just got a glimmer of our little Charlotte! She cracked open her little eyes enough to see and grabbed an Easter egg and shook it. 
A plastic colored egg has never looked so good.

breaking news!

 Just now at 1:30pm on Easter Sunday little Charlotte just took a turn for the better!  She could open her little eyes enough to see and hold an EASTER EGG. She started making her little sounds, playing with her toes (trying to pull all the cords off), and shaking the candy in the little egg.  We are all thrilled to see the first little signs Charlotte feeling better!

And YES, the Easter Bunny aka Mother Rabbit hid eggs in the room (including one money egg!) and the girls had their traditional Easter Egg Hunt.  Abby found the money egg this year.

so much loving care... many helping hands.

 When sweet Charlotte gets uncomfortable and frustrated, her support team jumps into action.
 Justin is on "me-me duty" while mommy sleeps.
 Great Grandma Ruth visited yesterday... so did Bella & Evian!
 Aunt Jan was here from Broken Bow.
 So much caring support... It was fun telling the nurse after she asked "Do you all live in Omaha?" and we could answer "No, Grandpa Greg & Fiona flew in from Alabama, Daddy Justin flew in from DC, Aunt Jan drove from Broken Bow, Auntie Abby drove in from Minneapolis - and Mommy, Charlotte & Grandma Bunny live in Oakland."
Baby Girl's little face is still puffy and swollen... but the swelling is starting to go down a
little so that Pookie can open her eyes a little sliver - and she likes that!

Saturday, March 30, 2013

resting and healing.

The scene in Room 509 at Children's Hospital today was both sweet and difficult. We got to leave the PICU about noon and move to a regular floor.  Charlotte did a lot of sleeping and it was super sweet to see Hannah curled up in the little bed with Baby Girl. 

It was difficult when Baby Girl tried opening her little eyes which are too puffy and swollen to open.   She rubs them with her little hands in frustration.  They are really swollen and I am sure they feel really tight & uncomfortable.  Please pray for the swelling to subside.

Some good news to share... Charlotte's blood levels moved up high enough on their own so she did not need extra blood.  We are THANKFUL.

Thank you for your continued prayers... and HAPPY EASTER.

I have been reflecting on the fact that because Jesus lives and reigns is the reason that prayer is even an option.  What was accomplished on the cross for us changes everything.  HALLELUIA.

doctor's good report and prayer request.

Charlotte got a good report this morning (as you can read from "Night Nurse Abby"'s account.)  We are excited that Charlotte might get to get off the PICU floor soon.  She will be more comfortable and will have less tubes so that she can he held.  They have not had to give Charlotte any extra blood yet, and about 50% of the time it is necessary.  Please join us in praying that her own little body can rebuild her blood levels with a transfusion. Let's get those little pink cheeks back.

Hannah is a champion nurser as many of you know, and as you can see by looking at little chubby Pookie-Pants.  Got a text from Hannah early this morning that said "Wait until you see how excited Charlotte gets when she gets to nurse.  It honestly kills me."


the other night nurse... sister love.

 Sweet Abby drove in from Minneapolis and arrived about 9pm to assume the night nurse duties with Hannah.  I got a text from Abby about midnight that said "Everything is good! Hannah is sleeping and I've got my chair next to Charlotte."  Hannah texted me at 2:45am and said "Abby is spoiling me with sleep!"

I had some flashbacks because Abby stayed with Hannah in the hospital overnight when Charlotte was born too.  When she arrived, I headed home to sleep... both times.
"Sisters... sisters... there were never such devoted sisters..."  
Left: Abby  Middle: Emily  Right: Hannah (at just about Charlotte's age)
It is fun to watch sisters extend such deep loving care for each other... Emily would be here too if she could!

tender loving care.

After Charlotte got checked into her PICU room, we made sure that there were caring touches and soothing voices right there to bring some comfort.  She was on morphine to control her pain but got off of it at 2:45am  this morning once she woke up enough to start nursing. Great news.

Kiley and Andy stopped by in the evening and Nurses-Training-Kiley told us what all the numbers on the monitors meant.  She "checked everything out" and gave her approval. Smile. (We loved our night nurses, Jason & Michelle, at Children's by the way.)

The bottom photo of her hand is the only limb that did not have a tube sticking out of it!  She had IV tubes (or something) in both her feet and another tube in her right arm.  They also had a catheter in and a drain on her head wound.  Sweet baby girl...

first haircut.

When talking to Dr. Miller before Charlotte's surgery, he said he would just shave the incision area if we liked that better.  (We were weary about shaving her whole head since Charlotte Grace has had a head of hair since she was born.)  Well, the message did not get transferred to the prep staff so Miss Charlotte got her first haircut yesterday.  We are fine with it and excited to see Charlotte's new look.

Friday, March 29, 2013

all done. everything good.

We have thankful hearts.  Relieved hearts.  Charlotte Grace's surgery is all done and everything went very well.  Both surgeons used the words "it was easy".  She did not bleed too much and thus did not require any extra blood.  Her eyes did not swell shut!  She is resting peacefully now.  She is still hooked to one IV and all kinds of monitors, and we were told she might not be interested in nursing tonight for the grogginess.  Hannah is doing great.  Really great.  And really strong.

After we all took turns seeing her post-recovery room, Hannah turned to her dad and said "How do you think she looks??"  Greg replied "I think her head looks a little purple."
Humor feels so good after a day like today.


sweet charlotte is in surgery now.

Charlotte Grace checked into Children's Hospital today at 9am to prepare for her surgery technically called "Posterier Vault Reconstruction".   We have known since her two month appointment that this surgery was pending until she reached the 'perfect age' to have this corrective surgery performed.  She will be 8 months old in a week.  Basically, Charlotte's skull fused prematurely and her lack of a "soft spot" was one of the tell-tale signs.  With the "cranial synostosis along her sagittal suture" her little head can only grow length-wise and not round.  The surgery will remove the fused areas.  They will also remove part of her skull, remodel it, and then put it back.  This will allow her sweet little head to grow properly and allow plenty of room for what we believe is an exceptionally amazing brain.  Supposedly this happens to one in every 2000 babies... if that is the case, I do not know enough babies. And supposedly, babies respond remarkably well.  Today will be the hardest... on everybody.

This blog spot is for people who want to know more details about Charlotte and her family today... and we covet your prayers.  THANK YOU FOR YOUR PRAYERS.

We got to talk with her plastic surgeon, Dr. Jason Miller, about 11:30am and Hannah kissed her little girl and followed the little cart to the elevator with tears on her face at about 11:45am for the surgery. Dr. Miller will be assisted by neurosurgeon Dr. Mark Puccioni during the procedure. We just received word that they officially started the procedure about 12:45pm.

 Mother Rabbit thought she would share some photos with you from this morning while Baby Girl is in her surgery.

 When we arrived they were quick to check Charlotte's vitals
and draw some more blood.  Good to go.
 Do you like my hospital gown?
 Grandma Bunny got to cuddle with some bunny while we waited for the doctor.
Daddy was on the scene to provide some loving too.
Charlotte to blessed to have Grandpa Greg and Fiona, Auntie Jan Dobesh and Grandma Jane all at the hospital for loving on Charlotte - and Hannah! Aunt Abby is on her way from Minneapolis too.  In fact I told Dr. Miller "there are people who flew in from all over the country for this surgery in the waiting room... really." 
 This is the shape of the incision that will be made on little Pookie's head.  We asked the doctor to prepare us for how she would look after the procedure.  She will have a head wrap bandage that won't come off until Sunday.   We were very happy to hear that Dr. Miller will be the one taking it off on Easter Sunday! He said that sometimes the babies eyes are swollen shut, but let's pray that they won't be.  There will be swelling in the back of the head.
 Little cuddle time this morning... important for both people in this photo.
 The baby girl fell asleep for almost 45 minutes. Such a blessing since she couldn't eat.  She was bright-eyed and rested when the doctor arrived.
In her rolling cart bed ready to go... Aunt Abby gave Charlotte this new blabla doll for the surgery. We named her Daisy. At least she gets to go with Charlotte.
See you soon pookie...
Both girls were so brave.
Thank you for PRAYING. We can feel it. It matters. We need it.