Sunday, October 31, 2010

Happy Halloween!

Halloween weekend was a great excuse to dress up Gianna!


Family pic...I love the kissing cows!

BOO!

Here's the whole crew ready to Trick or Treat.  Dominic as Jango Fett, Haley as Wonder Woman, Gianna as Pumpkin Princess, Angelo the Cow, Luca as Michael Jackson, and Peyton as scary red faced guy!

Wednesday, October 27, 2010

This is Normal.......Really!

We had a little scare with Gianna's shunt over the past couple of days.  I noticed the areas around the shunt incision and beside the valve (the place that sticks out the farthest on her head) became swollen with fluid.  The fluid filled areas are soft when you touch them (kind of like poking a water bed) but pretty large.  Everything I've read about signs of a shunt failure or infection have "swelling or redness around the shunt site" at the top of the list.  We'd pretty much convinced ourselves that was the case and that we were in for an ER visit, a shunt drain or revision, and another hospitalization for Gianna. 
So needless to say I was surprised when Dr. Pittman took one look at Gianna today, said she looked great, and that the fluid build-up is not uncommon for the type of shunt valve she has (a medium pressure valve) and with her being so young and so small still.   I was even more surprised when he said that what we need to do is press very firmly on the shunt valve 25-20 times, 2 to 3 times per day to "prime the pump" and release the fluid.  I still don't even feel entirely comfortable laying Gianna on her head on the side with the shunt, but he showed me how to hold her head press on the valve like the piece of hardware that it is.  Yikes!!  Well, it looks like this is just part of the process of learning what normal life is with Gianna.  A head full of fluid and pressing on her shunt like I'm priming the lawnmower is apparently perfectly normal and nothing to worry about!  I was really happy with the good news of course, but could have done without the pressing-on-the-shunt part! 

Here's a picture of Gianna yesterday.  I dressed her up with a bow for her First Steps evaluation.  :-) First Steps is Kentucky's Early Intervention program, and provides therapies to kids age 0-3.  We knew about the program because Angelo uses it for Speech Therapy (and is completely in love with his speech therapist, by the way!  I swear he's not learning his colors on purpose so she will keep visiting him.  He says everything is pink....but that's another story).  The evaluators were wonderful - they stayed for about an hour getting to know her and asking lots of detailed questions about her development.  She's considered at-risk due to her diagnoses, even though she's still too little to participate in some of the therapies.  She'll start off with a service called Developmental Intervention.  The therapist will keep a close eye on her development and whether or not she is meeting milestones (like rolling over, interacting, etc.), and will also teach us things we can do at home to support her development.  Again, this is another service that I'm really thankful KY has available for children!

Monday, October 25, 2010

One Month Old!

Gianna turned one month old on Saturday and had a great weekend to celebrate.  She was blessed by several visitors - it has been so nice for all of us to catch up with friends and family this way!!  It's hard to believe she's already a month old.

One month old with her baby doll from Savannah

G's Aunt Wendy got to visit with her for the first time


Gianna was ready to watch football on Sunday with her Steelers outfit on!


Friday, October 22, 2010

True Blue Baby

Now that Gianna's recovering from her shunt surgery, she's keeping those blue eyes open a lot more than she did before!  She's definitely a True Blue baby.....she is at home and doing as well as she is due to the awesome, special care she's received from everyone at UK.  We'll never be able to say enough how thankful we are!!

Her pediatrician appointment this week went well - she's already gained a pound since her birth weight (she's 7 lbs 5 oz now).  Today I met with her First Steps service coordinator to get those services started.  I'm not sure what she'll be eligible for at this point, but they provide therapies like physical, speech and occupational therapy.  I'm keeping my fingers crossed that she gets into the Kidz Club and then she will be able to receive the First Steps therapies while she's there.  The days with her are truly flying by now - just one more week till I start back to work part time. 

Tuesday, October 19, 2010

Gianna's First Pumpkin

Pumpkins for the kids!

Gianna's Nana & Papap (Matt's Parents) came in for the weekend to help us out while she was in the hospital for her surgery. When we brought Gianna home, they had a pink pumpkin waiting on her. We thought Dominic and Angelo would be opposed to having anything Pink in the house but they have embraced it all (at least for now). Gianna will be headed back to the pediatrician tomorrow for a follow up and will return to see the neurosurgeon next week. As many of you would imagine, Gianna is already being spoiled rotten. She wants to be held and loved on all the time and gets upset whenever we put her down! 

Well maybe Dominic wasn't too thrilled about the Pink Pumpkin

Saturday, October 16, 2010

No Place Like Home

A peaceful moment before going home

Will be so nice to have no more monitors and IV's attached to her!
A huge blessing today...we got to take Gianna back home!  After spending the night with her at the hospital, we got the news early this morning that she was well enough to be discharged.  We can already tell the shunt surgery was absolutely the right decision for Gianna.  Although her poor head looks like it's really been through it, overall she's doing well. The main difference we have noticed so far is the improvement in her eyes.  She's more alert, opens her eyes wider and they move together in sync much better than before.  It seems that the shunt is really going to help her experience and enjoy the world around her.  We're so grateful for the care she received and happy for her to have the chance to feel better.

During the past 24 hours at the KY Children's Hospital I met a few other parents of children there.  A father of a one month old girl from Salyersville having open heart surgery, the mother of a sleepy 4 year old boy with Spiderman PJs on - I don't know why he was in the hospital, but she said they had already been there a week.  My heart goes out to all the parents of these little ones who are there for the long haul.  I felt an instant bond with them, like we'd all been inducted into a club that we had no intention of joining.  At my kitchen table tonight typing this, I'm thinking of them still being there and  wish so much they were experiencing the happiness that we are tonight - the feeling of our baby being well enough to go HOME. 

Friday, October 15, 2010

Post-Op / Road to Recovery

Gianna's shunt surgery was successful. In fact, it went so well that the Neurosurgeon came to talk to us approximately one hour after we left her. We thought we would be waiting a couple of hours before we got any news. I can't say enough about UK Hospital and all of Gianna's doctors. A lot of places claim to be the best and many people claim other places throughout the country are front runners in pediatric neurosurgery but we wouldn't want her to be anywhere else. UK has exceeded expectations on many levels which has helped us through these times and for that we are truly blessed. Right now (11pm), Matt and I are hanging out with Gianna during her recovery in the UK Children's hospital. There is a slight possibility she could get discharged tomorrow (Saturday). We will keep our fingers crossed but if she is not ready to come home just yet, we definitely know she is in a great place here at UK. I attached a couple post-op photos as well as a short video clip of her an hour after surgery.  

Surgery Day...Again

Gianna has handled the morning really well so far - the hardest part for her was not getting to eat this morning! She's in surgery now so we're anxiously awaiting news. Here's a few pictures and a short video clip from this morning in the pre-op area.  

Thursday, October 14, 2010

De-mystifying the Shunt

Although hydrocephalus and shunts are a great deal more common than encephaloceles, it's still not exactly common knowledge what they are and what the surgery is designed to do.  I learned a little about them in my rehabilitation counseling training, and there was actually a woman in my masters program who had both hydrocephalus and a shunt - pretty inspiring!  So my really simple explanation is this:  hydrocephalus is basically the buildup of cerebral spinal fluid in the brain.  We all make lots and lots of CSF every day and it is just naturally absorbed.  The neurosurgery resident yesterday compared CSF to Gatorade.   I'm not sure I completely understand that analogy, but I guess his point was that it's good for the body.  Children with hydrocephalus don't have the ability to reabsorb the fluid, or the flow of the fluid in the central nervous system gets blocked - causing it to collect in the ventricles of the brain.  This is why the heads of children with hydrocephalus can become very large.  The fluid compresses and crowds the brain tissue and doesn't allow it to grow normally. 
A shunt is a long, thin tube with a valve.  The neurosurgeon will make two incisions - one small one in her stomach and a slightly larger curved one in her scalp.  He'll then make a small hole in Gianna's skull, and insert the tube to drain the CSF.  The tube will go underneath the skin down the back of her head and all the way to her stomach.  A large amount of the thin tube will be inserted into her stomach (3-4 feet of tube!) so that it will grow with her as she grows.  It's hard to believe there's enough room in that little stomach for that much tubing!  Once the shunt is inserted, she will need to have it for life.  The valve is in the brain to regulate how much fluid drains to the stomach, where it will be absorbed.  Once the fluid gets to a certain pressure level, then the valve will open and some of the fluid will drain.  Here's a couple of pictures that give an idea of how this works.



Of course there are you-tube videos that show the entire surgery to insert a VP shunt into an infant, for those of you with a stronger stomach than mine.  I think for now I prefer these cartoon illustrations! 

Wednesday, October 13, 2010

Ultrasound Results



At least she didn't have to get out of the stroller (or even wake up!) for the ultrasound.
Gianna had her ultrasound this afternoon and we met with the neurosurgeon, Dr. Pittman, to interpret the results.  The verdict is she has to have the shunt.  On Friday.  We sure hate for her to have to have another brain surgery so soon, but it looks like it's inevitable and will hopefully be for the best both now and in the long run.  Dr. Pittman thinks it will help her have more energy, will let her brain grow without the pressure of the fluid building up, and may even help her eyes to be more focused.

Gianna's Due Date

So I just remembered that today (Oct 13th) was actually my due date for Gianna!  Today is definitely a special day - it's our nephew Peyton's 12th birthday and our little friend Madison's 5th birthday.  G's been with us almost 3 weeks now, but it sure seems like longer!  She had a great weekend with lots of visitiors, friends and neighbors bringing dinners, cards, calls and well-wishes from so many wonderful people in our lives.  We will truly Never be able to thank everyone adequately for their kindness to us during this time. 

Today's a big day for Gianna - she goes back to UK to have another head ultrasound.  Although I honestly think her head size has not grown much (or has even gone down a little) since coming home from the hospital, the ultrasound will give the neurosurgeon a better picture of what's actually going on with the cerebral spinal fluid in her brain.  If it is continuing to increase, then that will mean that there is more pressure being put on her brain and she will need the shunt surgery.  

I got her this bouncy seat yesterday - helps her to sit up and see what her brothers are doing!

Love this bow....

With future boyfriend Erik :-)

Daddy's Girl - getting some rest before her appointment today
 

Kidz Club

Mark Twain once said, "When the end of the world comes, I want to be in Kentucky.....because it won't get there for 20 years".  Usually I have to agree that Kentucky tends to be a little behind the times.....but yesterday I found a great example where KY is actually in the forefront.  I visited a pediatric medical day treatment facility called The Kidz Club to see if it might be a good fit for Gianna once I return to work.  KY is one of only three states in the country that has this type of licensed health care facility for babies and toddlers who are medically fragile!  I have to admit I was a little skeptical before visiting.  Maybe because of the name?  I don't really get the point of changing the "s" in a word to a "z".  Anyway - amazing place....absolutely amazing.  It is completely staffed by RNs, LPNs and CNAs, the staff to baby ratio is 1 to 3 and many times 1 to 2.  All types of therapies take place on-site.  Staff are all trained on the particular medical needs of each child and carry out the doctor's orders for their plan of care.  They are familiar with Gianna's diagnoses and serve other children with hydrocephalus and brain anomalies.  And when I visited the infant room, they were playing a Michael Jackson CD and dancing with the babies.  :-)  So needless to say, we're applying.  We would have loved for Gianna and Angelo to attend the same place for day care/preschool, but he is really happy at Park and I think this might be just the right fit for G. 

Sunday, October 10, 2010

Gianna by the Numbers

As it's both football season and Keenland thoroughbred racing season in Lexington, a lot of minds are on "the odds" this time of year.  This got me thinking about how although Gianna's only a little over 2 weeks old now, she has already been so blessed and beaten so many odds herself.  At least 100 times a day Matt and I look at Gianna, look at each other, and marvel about how lucky we are and how incredibly well Gianna is doing.  When Gianna's encephalocele was diagnosed at week 20 of my pregnancy, here are some of the few statistics that were available on her condition and prognosis:
  • Encephaloceles occur in about 1 in 10,000 live births.
  • Encephaloceles are a prominent cause of spontaneous miscarriages before 20 weeks.
  • An encephalocele reduces the likelihood of a live birth to 21%.
  • Only half of those 21% survive.
  • 75% of those survivors have varying degrees of mental disabilities, the severity is higher for those who have the brain herniation on the back of the skull, as Gianna's was.
Grim, huh? We knew that odds were against her to survive or thrive.  We know that Gianna's future is uncertain and that she has an uphill road ahead of her.  But regardless of what happens next, Gianna has already come out of the gate like a 50 to 1 Triple Crown winner. 

Thursday, October 7, 2010

First Days at Home

Hanging out with Dominic before her pediatrician visit
What can I say......it is wonderful having Gianna at home!!   After one day just relaxing at home with her brothers, Gianna had a few Dr. appointments.  She had her first regular pediatrician visit yesterday.  And today she went back to the neurosurgeon's office to get her stiches out from the encephalocele removal.  (Big thanks to her MiMi for helping us make it to all these appointments!!) The worst part for her was getting all the tape out of her hair from the bandage!  Her scar is pretty wide across the back of her head but it looks like it's healing well and will be eventually covered by her hair. 
Gianna is two weeks old today.  It's already hard to remember what life was like before her!

Getting stiches out.....



Brave girl


I'm ok now!!



Gianna's cousins Haley and Peyton finally got to meet her today!
Her Aunt Cara wanted to hold her all night.

Monday, October 4, 2010

Homecoming Day!


Gianna's ready to go home!
I arrived at the hospital today prepared to get all the info on the shunt surgery tomorrow. Instead, the neurosurgeons came by to tell me that not only is she NOT having surgery tomorrow, but they think she can go home TODAY! They want her to have another week to heal from her first surgery since the shunt will go through the same site in her head. She has been doing so well lately that they think she can stay at home for a week while her incision heals.
Our whole family together for the First Time....Finally!

Sunday, October 3, 2010

Watching & Waiting

This weekend has basically been a transition time for Gianna to heal from last week's surgery in preparation for the upcoming shunt surgery on Tuesday. We've spent every possible moment with her here at the hospital. I feel like I'm constantly watching her for any signs that the increasing pressure in her brain in causing her to get sick. Her head circumference measured larger again last night but the nurses and doctors always assure us that the good thing about young infants is the ability of their heads to moreceasily expand since the skull hasn't completely formed and closed yet.
While we've been watching & waiting...lots of special things have happened this weekend. Gianna has had lots of family & friends come by to meet her and wish her well, her Granddaddy & I got to give her her first post-surgery bath last night, the boys (along with the McIntosh gang) had pink ice cream cake from NaNa & PapPap to celebrate Gianna's birth, and Dominic lost a tooth while at the hospital visiting G so the tooth fairy made a visit last night also! :-)

Saturday, October 2, 2010

Brotherly Love

Dominic got to come visit today after his soccer game.  He said they won the game for Gianna!

Dominic wanted us to put her purple bow back on.


D decided to nickname Gianna "Cute Princess"!


Friday, October 1, 2010

Gianna's homecoming is going to be delayed a little longer. When Matt & I got here this morning, the nurses told us that her head circumference measured larger over the evening, meaning that the CSF is increasing in her brain. So although we had hoped she may be able to do without it, the shunt is now a definite. Once the team of Drs. did their rounds this morning, we found out she will stay here for the weekend, will have the head ultrasound on Monday, and is scheduled for the shunt surgery on Tuesday. We've been told that the shunt surgery isn't as complicated/risky as the encephalocele surgery, but I still feel for her having to have 2 neurosurgeries in 8 days... Good news today though is that all came back ok on her kidney ultrasound. Apparently babies with encephaloceles often have kidney and optic nerve problems, but Gianna continues to beat the odds! Also, although I'm disappointed that we don't get to have her home for the weekend, I know she is so well taken care of here that it's the best place for her right now.

Here's a couple of pics from yesterday.  Matt and I are heading to the hospital now....hoping to hear that Gianna will get to come home with us today!!  More good news from yesterday - the opthalmologist said her optic nerve is intact.  She also had a renal ultrasound last night and we'll hopefully have the results today.  Thanks so very much for all the visits, prayers and good wishes.  Hoping to share more good news later today!