My name is Abby and I am a head picker

I don't get to go to church very often because its winter and Dr. P (our pediatrician) told us to keep Baby Girl out of areas where lots of people are to avoid catching any type of cold or flu until April.  Scott used to work with the youth (he had to teach on Sunday) so that meant I stayed home while he took our other two girls to church.  I had the opportunity to go today with Scott and our older two girls while, my sister, Audrey watched Baby Girl.

One thing I never noticed before that I notice now are babies' heads: the size, shape, amount of hair, any ridges...  I'm going crazy. Its all I can do to keep myself from kissing each and every baby I see and tell every parent to be thankful for that sweet, round noggin. 

This is a picture of Little E when she was just a few months old.

Mornin' Mama

 

Its early in the morning and I haven't gotten much sleep between the late night feedings and diaper changes.  I'm tired and wishing I could pull the covers over my head when I hear a little squeal and little feet kicking the crib mattress.  Baby Girl is wrapped up like a little caterpillar in a blanket and is eager to greet the day.  The minute she sees my face lean over the crib she does the largest grin her little face will allow.  I LOVE having a baby in the house again.  Nothing is sweeter than seeing a baby "light up" when they see their mother's face first thing in the morning.  Priceless!

Sisters

 Mom, Sisters and Me

I grew up in a family with 6 kids: 3 boys 3 girls... we were our very own Brady Bunch.  I always had someone to play with.  I was happy to be apart of such a large family.  I always wanted us to be together forever.  As I grew up I knew I wanted children, maybe not 6 but at least 3 or 4.

During our newlywed stage of marriage we had a picture perfect plan of our future family: 2 boys and 2 girls.  Each would have a best friend.  So naturally when we had Miss G and Little E, we thought okay now its time for our boys.  When we found out we were having another little girl, we were surprised to say the least. 

Sisters.  I believe is the truest form of friendship.  I have two sisters.  One older. One younger.  Through the years we have laughed, cried, fought and hugged.  Drama, yes.  Loved, yes.  I have gained many friends and lost touch with many friends over the years but my sisters have always been by my side.  That doesn't mean that we always get along or agree but we are there to pull one another at different times in our lives.

When we found out that Baby Girl was another little girl we were thrilled.  Three girls.  Could you get anymore perfect for our family.  She fits right in.  Pink, babies, strollers, purses, barbies, painted nails, hair bows, high heels...  I think Heavenly Father knew a boy wouldn't survive.  :)

Scott (who I might add is all boy) said it best as he was driving down the road one day.  He realized that he was thirsty and grabbed a bottle of water.  After he drank the bottle of water in one gulp he said out loud to himself, "Whew, I was a thirsty girl."  hahaha.  By far my favorite phrase to come out of that boy's mouth.  I sure do love him!

*Just a little note.  I really have the best brothers too!  They are my best friends and are always there to help in anyway possible.

Newborn Pictures of Baby Girl

My sister, Aud, is a wonderful photographer!  She is seriously talented.  Audrey took some newborn pictures of baby girl.  Here are a few:

Question:  How do all the professional photographers take all those naked pictures of babies and not end up with poop on everything.  Baby Girl peed and pooped on like 4 blankets during our photo shoot.  It was great fun. haha.

The Decision

Scott and I were left with the difficult decision of which surgery we wanted Baby Girl to go through.  After much thought and prayer, I knew that we needed to speak to other parents who had gone through the same thing.  Avery's Angels' had directed us to a website called Craniokids.org.  Parents of children who have craniosynostosis go to that website and chat with each other.  They discuss day to day life, how surgeries have gone and what Dr.s are the best.  Its a great source of information.  Dr. M's (craniofacial surgeon) office had called a few of their patients' parents to call or email us to talk to us about their experiences.  I literally spoke to parents from all over the world.  I heard about what procedures they chose, why and their outcomes.  It was such a comfort to be speaking to all of the wonderful individuals.

After the diagnosis, I posted what was going on in our family on facebook.  The response was overwhelming!  I received an email from an acquaintance from high school who had just gone through the same thing with her son a few years ago.  Its amazes me how Heavenly Father works.  He puts individuals into your life and you go about being friendly to one another then something happens and there is a connection.  She has been a huge blessing to me through all of this. 

We finally decided after all of our praying and research that the CVR is the best option for our Baby Girl.  We feel at peace with this decision and know this is the right direction we need to go in.  I nervously called Dr. M's office and scheduled her surgery (that was a difficult phone call).  The surgery is set for May.  So what does that mean for us right now:

1. Weekly shots (procrit: a red blood cell booster) starting in April and continuing until the surgery.
2. Keeping her quarantined until July.
3. Check-ups with Pediatrician and Craniofacial Surgeons.
4. Fattening her up so her weight is where it needs to be.


We will start keeping everyone quarantined in April through June.  Miss G and Scott will be the only ones allowed to go to school, work and church (and showering as soon as they come home).  We do not want Baby Girl to get sick at all because she needs to be her healthiest going into surgery.  This will be hard but sometimes you just have to do what you have to. 

Letter to Sheila

*You will want to turn off the music on the bottom of the page before playing the video.

Sheila is the mother who posted on BabyCenter about early detection of Craniosynostosis.  I wrote her this letter a few days after reading her post just after Baby Girl had received her diagnosis.  Sheila is the owner of the Non-Profit Organization Avery's Angels.  She put my letter to music and has it on her website.  She sends headbands to the girls and do rags to the boys who have been diagnosised with Craniosynostosis.  She is a great example to me and has helped me throughout this entire process.

Cranial Vault Reconstruction

Our other option was the CVR "Cranial Vault Reconstruction".  This surgery is at least 6 hours long.  She would most likely need a blood transfusion.  This will get pretty graphic.  What they would do is make an incision from ear to ear (the entire length of a headband).  They would open her scalp completely, remove her skull and reform it on a table in the operating room.  As they reform her skull they would cut open some areas, put plates and screws to connect other areas.  They, then, would put her skull back over to protect her brain and close the incision.  Intense SLIGHTLY! 

We honestly didn't have a clue what we wanted to do.  Both surgeries were equally dangerous.  We went home and started praying about what decision was best for our little one.