Showered with Love

Last night a group of incredible, wonderful friends (Tara, Brigette, Susan; her daughter Madison, Kim, Lynne and Cara) completely suprised me with a baby shower on the patio at Merrick!  Words really can't describe how touched I was by each of them being there and for the incredibly sweet, meaningful gifts for Gianna.  (And oh-my-gosh....those Gigi's cupcakes!!) Of course there were a lot of tears, but all happy and hopeful ones - I'm getting so excited to have this little girl and share her with these incredible women!  I felt so pampered - Lynne gave me a silver St. Gianna patron saint necklace, and Susan gave me a pearl bracelet with a cross and Gianna's initials engraved on it.  I'm wearing them both today!  Tara gave me a beautiful pink keepsake box to keep all Gianna's baby treasures.  Brigette brought Gianna a perfect white bib with a cross for her baptism and a Willow Tree "Angel of  Miracles".  Her Aunt Cara is making sure I don't wind up dressing her in hand-me-downs from the boys and gave her an absolutely adorable tiny tutu dress and baby hairbows!  Kim gave her the softest pink crib bunny, a beautiful silver rattle and a book called "This Little Light of Mine" which I had never read before.  I read it last night before bed (with more tears of course!).  I'm probably breaking some kind of copyright law here, but here's a very abbreviated version of the story.  It's so perfect:

"We all come from a very special place in heaven.  Here, angels sweetly tell us about life on earth.  'These are your ears,' said one angel to a baby girl. 'With them you will hear the beautiful sounds of the world, like birds and water and singing.'  'These are your eyes," said another angel. 'With these you will see all of the gifts God has made on earth.  And look down here, you have two feet and ten toes, little one.  You won't believe how much you will use these on earth.' 'Okay, let's see...,' the last angel said. 'Good, little one, everything looks fine.' The angel turned to all of heaven and anounced, 'It's a girl and we are ready to turn on her light!' The little one found herself waiting in a long long line.  When she made it to the front of the line she saw God.  'Come to me, little one,' God said. 'Let me have a look at you.'  'You see this light?' God asked, showing her His bright light. 'It is for you and it comes straight from my heart.' She knew the light was special and worried out loud, 'What if I lose the light, God?' 'It's impossible to lose this light,' God said. 'On your way to earth, you may lose your eyes or your ears.  While you are on earth, you may get sick and lose all of your hair.  But my light will always be in you.'  'What do I do with the light, God?' she asked. 'You will use it to love others, and your kindness will lead you right back to me.  You will recognize the light in other people when they are sweet or forgiving.  You see, little one, I have given my light to everyone.'  'God?'  'Yes little light of mine?' 'How will I remember you?' God was happy to answer her question.  He knew this soul was almost ready to go. 'Once a year you will celebrate your trip to earth.  As a part of the celebration you will see a light,' He said.  'This will remind you of me.  As you grow and love all the people of the world, you will notice the light gets brighter and brighter,' God explained.  Seeing the birthday cake, God's light, and the happy faces on earth made her so excited she began to float. 'I'm on my way God. My light will shine for the world to see!' 'I know it will,' God said, as His little light safely made her way to earth. 'I know it will.'

Thank you friends for holding Gianna in the light and helping her to be so loved and welcomed!

High Risk & High Expectations

Family pic at Hilton Head in July

My OB decided to transfer my care for the rest of the pregnancy to Maternal and Fetal Medicine High Risk due to the severity and complexity of Gianna's medical condition.  I had my first appointment with one of their fellows today - Dr. Pierce - and she was wonderful!  She was so thorough and prepared - she had already read all of my information and had actually done a lot of other background research in order to present Gianna's "case" to the other fellows.  She'll give an update on my pregnancy and Gianna's condition every Friday to the High Risk attendings and fellows so that everyone will be on the same page regardless of who ultimately delivers her.  Most importantly - she said she has "high expectations" for Gianna and talked about how encouraging it is that the encephalocele contains only CSF and that it hasn't grown dramatically.  She's going to arrange for Matt and I to be able to take a tour of the NICU to prepare ourselves in advance of the birth.  I also started the twice weekly fetal monitoring today and today her heartbeat was strong and regular.  All-in-all a positive, productive appointment!

Back-to-School

The big event for our family this week is our oldest son Dominic starting kindergarten!  So far he thinks it's "awesome" and loves his new school.  D has been Gianna's biggest fan since the beginning.  As soon as we told him I was having a baby, he said, "I'll go crazy for a baby sister!!".  He talks to her and tells her he loves her every day and try to feel her kick - so sweet.

So another rite of passage in the fall is medical students starting their clinical rotations.  Yesterday at my OB appointment I got to meet several of them and I think my pregnancy was their learning experience of the day!  They had lots of questions and it was pretty obvious none of them had ever heard of Gianna's diagnosis before.  Part of me was annoyed at the extra time spent and repeating my pregnancy story over and over to them, but I have to view it as a blessing.  Future patients they see who have a baby like Gianna will have the benefit of their Dr. having studied something like this before. 

What's in a Name?

Shortly after finding out I was pregnant, Matt and I knew exactly what we wanted to name the baby if it was a girl.  Looking back on that choice now, it seems perfect that we picked Gianna Marie.  Gianna is the name I chose when joining the Catholic church in 2007.  My friend Cheryl had given me a prayer card featuring St. Gianna and I thought it was fitting since she is a saint of motherhood and I was pregnant with Angelo at the time.  Gianna means "God is Gracious".  St. Gianna's birthday is Oct 4th (possibly the day our baby will be born!) and her baby, whom she also named Gianna was born on April 21st - Matt's birthday.  In his homily at her canonization Mass, Pope John Paul II called Gianna "a simple but significant messenger of divine love".

The meaning of Marie is "Bitter".  I certainly never knew that and at first it struck me as odd considering that Marie is literally one of the world's most popular girl names.  However, one definition of bitter is "hard to accept or bear".  There is no doubt that the news of Gianna's medical condition was a bitter pill to swallow.  But knowing that God IS gracious, it's helped us to see the experience perhaps as "bittersweet" instead - joy tinged with sadness. 

First Picture

We've had what seems like 100 ultrasounds thus far in the pregnancy, but yesterday the ultrasound tech offered to use the 3D ultrasound so I could see her face.  Emily (yes, I know all the techs by name now) has been an angel and proved that again by suggesting this.  I'm sure she knows how hard it must be to have to come for scan after scan of the encephalocele and talking with doctors about nothing but Gianna's problems.  We got to take a few moments today just to see her beautiful face and enjoy looking at our daughter!  She has her hand curled in front of her chin almost like she's giving a little wave.  Emily said the spot on the left of the picture is just part of the umbilical cord that is casting a shadow on her face.  I think those cheeks look just like her Aunt Cara's!

Lightening Strikes - Encephalocele 101

We've spent the past 10 weeks learning about Gianna's diagnosis - here's a quick summary.  An encephalocele is a rare neural tube defect where basically a portion of the skull does not close during development, allowing cerebral spinal fluid (CSF) or brain tissue to develop outside of the skull.  It can be accompanied by a number of things including chromosomal abnormalities, hydrocephalus, neurologic problems, ataxia, microcephaly, and a range of developmental issues. 

So what does this mean for Gianna?  Gianna has an occipital encephalocele, which means it is located in the back/base of her skull.   Her particular diagnosis is seen in about 1 in 10,000 live births.  She has also been diagnosed with hydrocephalus.  Thankfully, her MRI showed that her encephalocele contains only CSF rather than brain tissue. The other good news is that all of the chromosome/genetic tests came back as normal and all of her other organs are developing well.  We will likely never know the cause of her encephalocele - it is largely unknown since there are so few babies born with it to be studied.  As one of the doctors put it to us, "you've been struck by lightening". Once she's born, she'll immediately have an MRI to make sure there's no brain tissue in the encephalocele.  Depending on how she's doing, she'll then have neurosurgery to remove the encephalocele.  If it needs immediate attention, they will do the surgery within 24 hours.  If she is stable, they may wait 2-3 days to let her adjust to life in the "real world".  They won't repair the skull at that time, as it may naturally fuse together as she grows.  Removing the encephalocele may also remove the pressure that is causing the buildup of CSF/hydrocephalus (here's hoping!), if not, she will have another surgery in a few months to insert a permanent shunt to drain the fluid. 

Other than that....well, no one really knows.  Only time will tell how this will wind up affecting her health, her growth and her life.  Part of me is nervous to begin so many unknowns with Gianna at the time of her birth, but the larger part of me is just anxious to have her here to hold, love and heal. 

One Perfect Dress

We've hesitated to shop much for Gianna yet - no room decorating, no baby showers...but the one thing I wanted to make sure she had was a beautiful dress to wear home from the hospital.  Gianna's Nana Robbie and I found this one in Hilton Head at an adorable shop called "Island Girl".  My pics aren't very good because they're from my phone, but it's all white with smocking around the top.  So sweet and perfect for her first dress and maybe even a baptism dress! 

First Post

I decided to start this blog for a couple of reasons....1) to keep family and friends updated on Gianna without inundating people with e-mails and 2) to help other parents who may be going through something similar as our family.  On May 26th, Matt and I went together for the 20 week ultrasound of our baby.  We had a few moments of excitement when finding out it was a girl (!), but then quickly were crushed to learn that there was something seriously wrong with her brain development.  I will never forget the Dr. coming into the room and her first words were, "There's something terribly wrong with the baby." I felt like my heart stopped.  That day was no doubt the most difficult of my life, but since then, we've learned so much....  In a nutshell, Gianna has an occipital encephalocele and hydrocephalus.  Of course when we found that out we started Googling those terms and trying to figure out what this would mean for her.  We've met with a string of specialists since then (neurosurgeon, neonatologist, geneticist) and have been told so many things, including that she would probably not survive long, etc......but here I am at 30 weeks now and she is growing and developing, and on track to join our family sometime in Sept or Oct!  My due date is Oct 13th, but she will certainly be delivered early.  It was so difficult to find much information on the web, even looking at scientific studies, but I did come across one blog written by the mother of a little girl named Bryleigh in TX.  It meant so much to me to read about her story - the pregnancy, the birth, her first birthday....it made it seem possible that things could turn out ok for our little girl too!

We have been incredibly blessed by friends, family, co-workers, doctors and people whom we have never even met who have given us their support, warm wishes, and prayers over the past 10 weeks.  It is hard to even express the gratefulness we feel for the outpouring of kindness we have received from so many people all over the country.  THANK YOU from the bottom of our hearts - we love you!