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.

Endoscopic Surgery

This is a video of what they would do with Baby Girl at 3 months of age if we chose the Endoscopic Surgery.

The Specialists

The Specialists' offices were hours away from our home so we decided to take the Little E and Baby Girl, our two youngest daughters, with us and leave Miss G (our oldest daughter) with Aunt Aud and Uncle Geoffery so she could go to school while we were gone.  The appt. was 8am so we decided to get a hotel room close by.  My mother came with us as a moral support and to help us with any questions that may arise. 

I woke up a 6am with a knot in my stomach.  I knew that today was going to be hard, no matter how much preparation I had done.  Why is it when we have to face reality head on it sometimes leaves you feeling numb?  I was glad that my Mom had come with us.  She is such a strength to me and has a way of helping me do what needs to be done.  We were all in the car by 7:30am driving to the children's hospital where our Craniofacial Surgical team's offices were.  I start to jot down all the questions that we had for the surgeons. 

Why didn't I have the list ready?   I asked myself the same question in the car as I was writing them down.  I don't think that I could stomach writing out the list until the very last second because it made all of this WAY TOO REAL.  All I really wanted to do is lean out of the car window and throw up. 

We found the offices, signed in and sat down in the waiting room.  As I sat there, I looked around at all the other children's heads and wondered why they were there:  for the same reason, had something else happened, would my daughter grow up and be as beautiful as that little girl.  We were one of the first patients to be taken back to the plastic surgeon's office.

Dr. M (plastic surgeon) and his team walked in the room and examined Baby Girl's head.  He took measurements and agreed that she does have sagittal craniosynostosis.  He handed me a binder with the information that I would need on her condition.  He and I discussed our options.

Endoscopic  vs Cranial Vault Reconstruction

I had done so much research that I knew most of the information that he gave us.  It was comforting to not have any surprises.  Once he met with us they had us meet with her Neurosurgeon, Dr. R.  When Dr. R came into the room we all were taken back a bit because he was so young.  No one expects a Neurosurgeon to be young. 

I learned something about Scott and myself that day.  I talk things out.  I study, listen and talk (a lot).  I was surprised because it didn't seem that Scott asked many questions while we were in the office.  Actually it kind of made me mad until we got in the car and Scott told me everything he had observed.  I was so busy discussing everything with the Dr.s that I didn't have time to observe them and our surroundings.  Scott was so busy observing that he didn't have time to ask the questions.  Alone he and I both would be in trouble...  but together we make a GREAT team! 

We left their offices realizing we had a very important decision ahead of us.  The Dr.s wouldn't tell us what they preferred they wanted us to make the difficult decision of what type of surgery they would perform on our Baby Girl.

Meeting with the Pediatrician

I called the Pediatrician's office and made an appointment for the next day. As I walked into the pediatrician's office there was a much different feeling then I have ever felt. The nurse was kinder and quickly took measurements of her head, weighed her and left to get the Dr. As Dr. P, our pediatrician, walked in he calmly walked over to Baby Girl and felt her head, looked at measurements and then cleared his throat. He said that we would need to do a CT SCAN that she could quite possibly have sagittal craniosynostosis. If left untreated, her head would grow front to back but not side to side because the sides had fused. I started to cry. I knew this is what she had. I already had done all the research and understood what this meant for our little girl. Dr. P looked over at me and said "No tears. Let's take this one step at a time." I wiped the tears away and agreed.

We left the office and started to drive home when I got a call from the Dr. office. They got us in for a CT SCAN that day and we were to go straight to the hospital.

Honestly, I felt like I was in a daze. As I sat down and started to sign all the paperwork, I couldn't believe that I was here with my 3 week old baby who was about to have a CT SCAN of her little head. Because of the time of year, we were keeping her at home as much as possible and here I was with her in the hospital. Agh, so much for avoiding germs. I was able to lay her on the table and help the tech wrap her in blankets and strap her to the table. Luckily the little angel was asleep and didn't move at all. The tech then sent me out in the hallway to stand by the door. Scott and the girls were waiting in a room they had put us in earlier watching TV (thank goodness for Disney). As I stood there people kept walking in and out of the room smiling and patting me on my shoulder telling me everything is going to be okay. There is no telling the expression on my face. As quickly as they took her in she was done. Scott and I both thought, "Okay, this wasn't too bad... We can handle this..."

I got a phone call that evening from the Pediatrician and his nurse, "her skull has started to fuse. She has Craniosynostosis and we are sending you to a specialist this week." I already knew that she did. It wasn't much of a surprise. I started to realize that the dull ache in the pit of my stomach wasn't going to leave for quite a while. This is when I bowed my head to thank Heavenly Father for being aware of us and sending the right people to help Baby Girl.  And of course prayed that this wasn't really happening to us even though I was well aware we were already right in the middle of this bad dream.

2 week Appointment

I kept waiting for Baby Girl's head to round out, like they always tell you it will. I noticed that she never laid with her head straight back. She always laid with her head to the side. Hum, odd but really not that big of a deal. I am a pretty OCD mother. I know that and most of the time can acknowledge that fact. I watch and analyze everything ad nauseum. Just ask my husband, it drives him CRAZY! :)

I had Scott keep the other girls home while I took Baby Girl to the Dr.'s office for her check up. I was meeting with the PA because I was late for an earlier appointment with the Dr. (the snow helped with that). He gave Baby Girl the thumbs up on everything. I nervously asked him about her head. I was worried because it looked long and narrow compared to most babies heads. He felt around on her head, laughed and said "If we shaved 100 adult heads and you looked down on them, you would see all sizes and shapes. There is no need to worry". Okay, that made me feel much better but I still had that nagging feeling.

A few days had passed and I started to notice a ridge on her head. It ran from the middle of her head to the back. I just made a mental note and tried not to worry. Remember when I said I was OCD. Yeah, this is what I mean. One night I sat down at the computer and got on the Babycenter website. I was a member of the December 2010 birth board where I would write with other mothers who delivered babies that month. I came across a post written that had the words "Symptoms of Craniosynostosis". I didn't know what it meant but I clicked on the title. A wonderful woman had written about early detection of Craniosysnostosis.

Wikipedia defines:

Craniosynostosis, “Cranio" refers to Cranium: The upper portion of the skull. "Syn" to together, “ostosis” to the genesis of bone.

Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by ossification,[1] thereby changing the growth pattern of the skull.[2] Because the skull cannot expand perpendicular to the fused suture, it compensates by growing more in the direction perpendicular to the open sutures.[2] The resulting growth pattern provides the necessary space for the growing brain, but results in an abnormal head shape and sometimes abnormal facial features.[2] In cases in which the compensation does not effectively provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure leading possibly to visual impairment or an impairment of mental development combined with a significant reduction in IQ.[3]

Craniosynostosis is part of a syndrome in 15 to 40% of the patients, but it usually occurs as an isolated condition.[4][5]



One of the symptoms is a ridge on the skull. When I read this I lost it. I knew this was what she had. Because I'm very aware that I overreact about things I tried to stay calm as I googled as much as I could on the subject. Then I took what information I had to Scott. He could tell I was worried and read what information I had on the subject. That's when he agreed that we should call the Dr.

Baby Girl #3...

It was 1:45 in the afternoon on December 6th. Dr. L sent me and my hubby over to the hospital to tell the nurses I was in "labor". I had been having labor contractions for days that led to nothing at all. I was tired and ready to have this stubborn little girl. I felt kind of guilty telling L&D nurses that I was in active labor when I wasn't technically in labor so I told them I was having contractions (which was true) and that Dr. L told me to come over and tell them I was in labor (which was true). haha. I didn't want them mad at me before I even got in the door.

One of the nurses took me to a room that was at the end of the hallway right beside all the construction that was being done. Yeah for me. Blah. I thought how in the world was I going to go through natural childbirth with that right there. But, I got a room and I wasn't going to complain.

After a few hours of kind of pretending the contractions hurt they started to stay in a pattern and actually had some real pain behind them. Hum, maybe Dr. L knew what he was talking about. By 5pm I was in active labor. My Mom got there and Aunt Aud was on her way. Things were looking good! My two other daughters were with Papa living it up going to the movies and McDonald's. They were thinking life was good!!

This was the first time that I was not induced. I've always heard that induced labor pains are harder than starting natural. Unfortunately that didn't hold true for me. Turns out that this little lady was going to make quite the entrance into this world.

By 7:45 my water broke on its own and I was at a 4. Contractions were on top of each other. I didn't have time to breath through the contractions. By 8:00pm I wanted to push and Dr. L wasn't there. The nurse decided to check me and I was at a 10. Actually she felt Baby Girl's face. Um, yeah you read that correctly she was face up chin first. All babies that present this way are always a c-section. She called Dr. L right there and told him to come "NOW". By 8:15pm my body didn't care if he was there or not Baby Girl was going to be born. Dr. L had about a second to catch her. That's when I first noticed her odd shaped head. Everyone including the Dr.s chalked it up to how she was delivered. No one said anything.