First Christmas

A baby's first Christmas is always such a special, sweet time.  Gianna's had a break from all her appointments for the past couple of weeks, and we've been visiting with family and friends and just enjoying all the extra time together for the holidays.  We received many beautiful cards this Christmas - one of my favorites was from Bob and Judy in Wheeling - the verse inside said, "This Christmas let us celebrate a God who still delivers gifts in the most perfect and unique ways".  We feel especially blessed this Christmas by the perfect and unique gift of Gianna.  She got to attend Mass at Christ the King for the first time on Christmas Eve - the church was packed, but she slept the whole time!  We woke up to a snowy morning on Christmas Day and spent the day celebrating with family.  Here's a few pics of G during the holiday celebrations. 

The Gift of Friendship

My co-workers hosted a baby shower/birth celebration for Gianna the weekend before Christmas - SO touching!  We shared fantastic Indian food, homemade strawberry cake, and lots of laughter.  Gianna was passed around and cuddled the whole time.  I'm so very thankful for this incredible group of women....they were a rock for me during my pregnancy, an integral part of Gianna's birth, and literally kept her alive during her surgeries.  I could not have been blessed with a more wonderful "work family" than the UK Department of Anesthesiology!!



The boys were thrilled with the cake and balloons I brought home. 
They thought it meant it was Gianna's birthday and even sang to her!



Three Months Old and Hitting Milestones



G's message to Santa

Gianna is three months old today!  I get a monthly email that tells about each of the developmental milestones that your baby should probably be reaching around this age.  The email I got this morning for the three month old baby said this: "Babies are now at the stage when they love to wave their arms, pump their legs, and swat at whatever they can.  They're practicing their gross motor skills.  Most babies are smiling and starting to coo vowel sounds like "Oh" "Aah" and "ee" at this point".  Here's Gianna today:

Swating at her babydoll, cooing, smiling and kicking her feet all at the same time!  SO proud of her!

All I Want for Christmas

Having the kids together - happy and healthy - for the holidays is the best Christmas Gift we could have ever asked for!  Of course there are a few other things on the boys' wish list (skateboard for Dominic and "Candy!" for Angelo) so we made a visit to Santa this weekend so they could tell him all about it. 

In the Club

Here's G all bundled up in the back seat of my car - ready for her first day at Kidz Club on Friday!  Of course the first day leaving her was with the usual mixed feelings - hating to leave her, but also so happy we found such a good place.  She was sleeping when I left her there so it made it a little easier.  I picked her up early to visit the pediatrician and see what's going on with her ears.  Thankfully, it looks like she has fluid from a cold, but no infection.  And he agreed that the fluid likely was the cause of her earing evaluation results.  

Do You Hear What I Hear?

G was all smiles with her new Steelers outfit on

GiGi (as Dominic and Angelo have started to call her) had a full day of appointments today.  She started off the day with her first therapy session with the First Steps developmental interventionist (DI).  I can't say enough how happy I am with this program! Her DI already gave me lots of good tips on how to help Gianna interact more with her surroundings, people and toys.  She'll have sessions with her every 2 weeks.

Her last appointment of the day didn't go so well.  She passed an inital hearing screening when she was in the NICU, but with the parts of her brain that have been affected, she is considered high-risk for deafness or hearing difficulties, and was required to have another more detailed hearing evaluation before turning 3 months.  She had a lengthy evaluation today, and suprisingly failed the evaluation in both ears!  I honestly never thought this was an issue for her - I know she can hear at least to some extent - she gets startled by loud noises and turns to us when we talk. The audiologist said she had fluid in both her ears, possibly caused by an ear infection, and that could have definitely skewed the results.  So we'll get that cleared up first, and then she'll need more testing. 

Thankful

We had a wonderful Thanksgiving traveling to visit Matt's family in West Virgina.  Gianna got to meet so many family and friends that have been sending prayers and good wishes her way.  She even got to finally meet her great-grandmother - Noni - for the first time.  I'm having trouble putting into words how truly thankful we were for all of the kindness shown by so many people - so I'll just let a few pictures tell the story.

Obviously, she was hardly put down all weekend! 
Traveling with Gianna was another learning experience for us.  This was her first trip, and by far the longest time she had been in the carseat.  When we arrived at Matt's parent's house, the fontanelle (soft spot) on the top of her head was completely sunken in and every bone in her skull was obvious.  It resolved pretty quickly after she laid down for a while.  On the way home, the same thing happened to her head and she got sick the one time we stopped on the trip.  I called the neurologist and he assured me that this was more than likely just her shunt "over-draining" the fluid in her head, since she was sitting up in the car seat so long.  Although G is amazingly strong, little things like this remind us how fragile she can be. 

Everything I Need to Know....

Gianna is 2 months old today!  Every "anniversary" feels especially meaningful with G.  We've read several accounts of families with children born with encephaloceles, where their baby only lived to 60 or 90 days.  Knowing that makes every day with her seem so precious - I absolutely can't imagine losing her now.  Thoughts of those families, coupled with the approaching Thanksgiving holiday, makes me realize how grateful I am for Gianna and how much there is to learn from her.  Author Robert Fulguhm told us that "everything we need to know we learned in kindergarten"....  I think much can be learned even from the tiniest among us, which got me thinking....Everything I Need to Know, I See in Gianna.  We don't always find wisdom in the places we seek it, but here's what I've learned in 37 weeks of pregnancy and 2 months of life with Gianna:

• Trust God
• Exceed all expectations
• Take a deep breath. Repeat.
• Good things really do come in small packages
• Miracles and guardian angels are all around us
• Sometimes a good cry helps
• There's not much better than your own home, a warm bed, and being with the people who love you
• Live a balanced life - eat some, sleep some, play some, and smile as much as you can
• The smallest among us may have the greatest strength
• Have Faith

HAPPY THANKSGIVING and much love and thanks to our family and friends!!!





2 months old with Babydoll "Marie".  Savannah thought this
would be a perfect name since she and Gianna share this
middle name!



Seizure Free and Sassy




Finally got the call today from neurology and Gianna's EEG was normal!!  So we celebrated by (what else?) getting dressed up :-) I remember one of the neurologists in the NICU telling us that kids with agenesis of the corpus callosum (ACC) do not often have seizures(this is one of her diagnoses).  So this is definitely a silver lining for Gianna!  By the way - when researching more about this brain condition, I read that ACC is the disorder that Kim Peek (the man who was the inspiration for the movie Rain Man) had.  Like any disorder, there is a whole range of possibilities for the severity and prognosis.  So she won't necessarily have the same issues or abilities that he did, but I thought it was interesting anyway.  A few other updates:  her last appointment with the neurosurgeon went very well - he felt that she is healing nicely from both of her surgeries.  She'll go back after the holidays to have a CT scan to check the fluid in her ventricles.  Also, she got medically approved for the Kidz Club program!  I attended a seminar for parents at Shriner's Hospital last week, and met two other families who have children at Kidz Club in the infant room.  She's smiling some every day now (best part of the day!) and starting to be more alert.  It's amazing to me how fast she's growing - when her cousins Anne and Ashley sent her this tutu outfit, I thought it would be months before she could wear it, and now it fits perfectly!! 

Electroencephalography

That's apparently what "EEG" stands for.....who knew?  Anyway, Gianna had one this morning to try to determine if she is having seizures.  For this test, electrodes are placed all over the scalp and the electrical activity produced by neurons in the brain are recorded.  A neurologist will read and interpret the recording to see if the patterns of her brain's electrical activity look like she is having small seizures.  The procedure took about 45 minutes and Gianna slept through most of it.  Mostly it was just quiet and dark in the room, but at the end of the procedure, a light above her face flashed on and off rapidly in different patterns to see if that changed her brain activity.  We'll hopefully get the results as soon as tomorrow.  


Gianna wasn't too appreciative of the electrodes being stuck to her head!




Once the lights were turned out, she was fast asleep.



One of Those Days

"Being deeply loved by someone gives you strength while loving someone deeply gives you courage." - Lao Tzu


Since G is still so young, it's easy to forget for a while that she's gone through two major brain surgeries, and has a whole range of diagnoses that have severe implications. We are normally just so focused on enjoying and appreciating our time with her that sometimes we can get crushed by the boot of reality when reminded of her situation. Today was one of those days.


This morning Gianna had her assessment that will hopefully enable her to go to Kidz Club, as well as to receive some other non-medical services. Although the services are both for children and adults, the assessment tool is designed only for adults. So it is made up of all kinds of questions about the ability to take care of yourself (cooking, cleaning, driving, etc), social skills, and other such things that are totally irrelevant to a baby's functioning. I was worried about Gianna being able to qualify for the services, since these things don't apply to her, but the assessor assured me that she had another infant qualify recently "whose problems and diagnoses aren't NEARLY as bad as Gianna's". Ouch.


Gianna's other appointment today was with the neurologist. This was her first time seeing neurology since she was in the NICU. I talked to the doctors (who are awesome, by the way) for a long time, but the basic summary was this: Gianna seems to be doing well because all she really has to do at this point is sleep and eat and look cute. Just wait. Over the next year her problems will become more and more obvious. Again, ouch. And that cute little thing she does with her left leg....straightening it out several times a day and pointing her toe....that may be due to seizure activity. They scheduled her for an EEG first thing tomorrow morning, and want us to try to record her the next time she does it so they can tell better exactly what she is doing and why she is doing this.


These are the days that take strength and courage.

Family Time

Here's a few more pics from Halloween weekend. Gianna got to meet for the first time and be spoiled by her Uncle Nathan, Aunt Adria, and her cousins Luca and Paul.  And since her NaNa and PapPap were in town too, I think she was held pretty much 24 hours-a-day all weekend!

The big event this past weekend was my grandmother's 91st birthday.  Here's some pics of the boys with Gianna before going to the party. 

I think they would have gotten in there with her if they could!

Here's a couple of pictures from the party.  One of the things MeMa loves is babies and children - they are always sure to bring a smile to her face.  She was thrilled by the new great-grandchildren additions to the family (both Gianna and Joshua, who just turned a year old).  And of course Dominic and Angelo loved helping her blow out the candles. :-)



Four generations of girls

 So I went back to work last week part time.... A hard thing to do, made much much easier by the facts that, 1) my mom is helping us tremendously by watching G until we can (hopefully!) get her into Kidz Club and 2) I really do love my job.  I sometimes feel like I've taken on another full time job taking Gianna to all of her appointments, assessments, etc. but I guess with 3 kids there never will be enough time in the day!Here's one more picture I love of Angelo with Gianna.... Not that it's a great picture, I just think it's so sweet.  I was so worried that he would be jealous of Gianna and want nothing to do with her since he's used to being the "baby" in the family.  I couldn't have been more wrong!  He constantly asks to hold her, feed her, kiss her and hold her hand.  I love the way he and Dominic are so proud of their little sister!

Bed time for Angelo and Gianna