Let's start at the very beginning.

Just a short word of explanation ... I found several blogs today written by parents whose babies have craniosynostosis and they were very encouraging and helpful to me, even though I didn't know these people. I thought this blog would be a good way for me to maybe help other people and for our friends and family to stay updated on Lucy and her condition and her progress towards surgery and/or healing. This first post is long -- sorry!

Lucy Frances Fielding was born at 4:24pm on March 27, 2010. I had a very short labor (7.5 hours total) and I only pushed for about 20 minutes. For a first time mom, I was thrilled. It couldn't have gone better. I had a completely natural birth with a midwife and a doula in a hospital that supports waterbirth and natural births.

When Lucy came out, her head was obviously strangely shaped, but everyone just assumed it was from the quick descent down the birthing canal and because she was sitting so low down in my pelvis for the last few weeks of pregnancy. Her little brow was so furrowed that she always looked like she was mad. We just laughed about it and genuinely assumed that it would go away in a few days once the swelling from the birth went down. Here's her little mad face ...


We were just thrilled that she was finally here. The hospital pediatrician checked her out the next morning and the only thing he mentioned to us was that she had failed her hearing test in one ear and that her little pinky toe on one foot kind of overlapped onto the next toe. He just said we would have to have her hearing re-checked in a month or so, and the toe should correct itself. We were discharged from the hospital on Sunday, the next day, only 24 hours after her birth. It was awesome.

The next few days were full of the usual baby stresses, worries, joys, and amazing moments. There was little sleep while we both tried to learn how to nurse properly and there were plenty of diapers to be changed and holding to do.

My mom was staying with us that week and we talked about Lucy's head a little bit. My cousin Kaitlin was actually born with craniosynostosis and my mom said that Lucy's head kind of resembled hers but we weren't sure so we didn't worry about it too much. Our first visit with the pediatrician was on Wednesday, March 31. We just casually mentioned to her about Lucy's head and that she also wasn't breathing too well and that we were a little concerned because her brow bone was so far down into her nose and we thought that might be blocking her breathing. Our ped tried to get a little tube down Lucy's nose to check and she couldn't get it down so she got very concerned. She said she was going to call a doctor at Children's Hospital at Egleston (which very very very luckily happens to be almost around the corner from our house) and that we would be able to see this doctor who was a specialist. As soon as we walked out of the doctor's office, my mom said, "Are you okay?" and I immediately started to cry and she started to cry and we just hugged each other while we waited for the elevator. That's not the kind of news you want to get when your baby is four days old ... that something is seriously wrong with them ... something that is assuredly going to require major brain surgery while they're still a baby. I was very upset.

We got a call the next morning around 8:30am saying that they were ready for us at the Neonatal ICU and they had a room ready and that we needed to come as soon as we could. What?! I just thought we were going to see a doctor in an office in the next few days or something. Wesley was still sleeping and thankfully my mom and I were up and sort of dressed and had eaten our breakfast already. I had just finished feeding Lucy so we just threw a bunch of stuff into her diaper bag and we woke Wesley up and headed to the hospital. We got her checked in right away and almost immediately there were two doctors, three nurses, and what seemed like countless other people coming in and out. They were connecting her to all these tubes and monitors and it was all happening so fast. They told us that their main concern was that she wasn't breathing well and so they tried to get a tube down her nose and they were able to get a tube down both nostrils so that made everyone feel a little better. They said then that they were going to have a lot of doctors come and look at her, have an MRI and a CT scan done, and they were going to do a lot of bloodwork as well.

So here we are with a baby that's not even a week old yet, and they are poking needles into her everywhere trying to get her blood and telling us all this stuff. I'm literally wearing the equivalent of pajamas with my glasses on and my hair in a ponytail. Suddenly it just seems so serious and real that our baby, who we thought was perfectly normal, has a serious condition that is going to require surgery. I was already emotional from post-pregnancy hormones and lack of sleep and needless to say I cried a lot. Almost continually. Here's a picture of me holding Lucy while she's hooked up to all the stuff, and you can see my eyes/face are red from crying.

I don't remember much about our stay in the hospital except that it seemed to last for a week, even though we were only there for about 36 hours. It's all a fog. We tried to stay with Lucy as much as possible in the room, even though she was sleeping most of the time. They couldn't get her blood to come out very well because it was very thick so they thought she might be dehydrated. I got a visit from the lactation consultant and she basically concluded that Lucy wasn't eating much at all and so they asked me to start trying to feed her, then pump, then feed her what I pumped, and if we had any extra it went in the fridge in the NICU. You can imagine with a newborn baby who is eating every 2 hours or less that feeding and pumping and feeding took up most of our time. It was hard to see her eating from a bottle even though it was breast milk. I kind of felt like a failure. But we did what we had to do. Then we started having to weigh her before every feeding and then weigh her afterwards. We even had to weigh her dirty diapers. In between all of this, we managed to eat some. We knew she was going to have to stay the night, so we asked to have a room to sleep in and our assigned social worker pulled some strings and was able to get us a room because I had to nurse/pump so much and needed to be there. All I remember about that night is being incredibly exhausted and walking back and forth down the hallways between the NICU and the room where we were sleeping. I got a call in the middle of the night saying, "Please come over now because she's screaming her head off" ... she had gone to get a CT scan and they said she was a complete angel while they were doing it but as soon as they were done she started screaming and they couldn't calm her down.

Anyway, through all that fog, I do remember that we had some of the best nurses. They were so supportive and so encouraging and you can tell that they have to deal with families in our situation (and worse) all the time. I felt so bad having Lucy in one of the rooms because most of the other babies were in much much worse condition and some of them had been in the NICU for months. Even though we were scared about her condition, it was a reality check that some parents had it much worse than us.

They definitely confirmed after the CT scan that she had bicoronal craniosynostosis and would need surgery to correct it. You've probably read all this stuff and are still asking, "What is craniosynostosis?" I'll take a definition from WebMD and let them explain:

What is craniosynostosis?

Craniosynostosis (say "kray-nee-oh-sih-noh-STOH-sus") is a problem with the skull that causes a baby’s head to be oddly shaped.

A baby's skull is not just one bowl-shaped piece of bone. It is made up of five thin, bony plates that are held together by fibrous material called sutures . The sutures let a baby's skull expand as the brain grows. Over time, the sutures harden and close the skull bones together.

When a baby has craniosynostosis, one or more of these sutures close too soon. The head doesn't form a normal shape.

How the disease affects your baby depends in part on how many of the skull sutures close too soon:

• If only one suture closes, the baby's brain usually develops normally, but the head has an odd shape. This happens in most cases of craniosynostosis.
• If more than one suture closes, the baby's brain may not be able to grow as fast as it should. If severe pressure builds up around the brain, it may cause brain damage, seizures, blindness, and developmental delays. But this severe pressure is rare.

Craniosynostosis occurs in about 1 out of 2,000 births.¹ It is also called craniostenosis.

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Lucy's form of craniosynostosis is called bicoronal because her coronal suture is the one that is closed (the one in the front of her head) and the bi- indicates that it's closed on both sides, not just one.

I thought that they did surgery right away when they found something like that, so I was thinking that we were going to be there for a week or so. I was so overwhelmed. But we were able to meet with the neurosurgeon (Dr. Wrubel) and the craniofacial plastic surgeon (Dr. Mackay) that work together to fix babies with craniosynostosis. They were very reassuring and they explained that they don't usually do surgery until the baby is about 9 months old. This is because of the blood loss involved with the surgery and how thin the skull bones are up until then and probably other factors as well. They were actually doing a surgery that morning that we met them. Dr. Wrubel had just finished his part and Dr. Mackay was finishing up. I think that's what takes the longest is the reconstruction.

They reassured us that she would most definitely continue to develop normally like any other baby. We were just told to watch out for anything that was extremely out the norm and they even said we could call them anytime we had any questions. After promising to make follow up appointments when Lucy was 2-3 months old and after meeting with a geneticist who asked us a million questions, we were free to be discharged. They were concerned that Lucy's condition may have been related to a genetic defective syndrome, so we had to go in the next week and have a lot of blood drawn so they could send it off to a genetic lab and find out.

So here we are. Lucy is two months old. We have an appointment with Dr. Mackay next Friday (June 4 at 10:00am) and an appointment with Dr. Wrubel at the end of the month (June 28 at 9:00pm). We still haven't heard back about the genetic tests, but I don't think any one at this point is expecting to find out that she has any abnormalities. I think everyone was just concerned because my cousin had the condition and now we have a baby with the condition.

I'll be sure to post when we hear anything about the test results and I'll post after we have each visit with the doctors and what they say.

The hardest part has been the emotional struggle, to be honest. Lucy is as happy as she can be doing the normal things babies do. But not a day goes by that I don't think about her head and the journey we have ahead of us. Quite often I get jealous of my friends who just had babies and they don't have to think about any of this. They can look forward to milestones like crawling and talking and their baby's first birthday party. I look forward to all of those things, too, but I know that in the midst of all that, we're going to have to spend a lot of time in the hospital and that Lucy is going to have to undergo a lot of procedures that will be hard for her and hard for us to watch her go through. I have to literally give Lucy and my emotions over to God every day because I don't want to be bitter or just thinking "woe is me" for having a child with craniosynostosis. I honestly don't, though doing it is a much more daily struggle than I'd like to admit. I know that for whatever reason God has a plan through all of this and His plan may just be that we can touch the doctors and nurses and everyone involved by the way that we put our faith and our trust in Him. If just one person comes to know Christ or love Him better because of us and because of Lucy's journey through this condition, I rejoice.

We also continue to pray for miraculous healing -- the kind of healing that makes doctors say, "There's nothing wrong with her head anymore" and the kind of healing that means no surgery. But we're also aware that God's plans are higher than ours, and we submit to whatever comes our way.

Here's Lucy at one month old:

Here she is at two months old:

We are SO blessed to have her. We named her Lucy Frances because when I was pregnant with her, I felt like God said that she would bring His light and His freedom wherever she went. Lucy means "light" and Frances means "free". I look forward to having the surgery behind us and watching Lucy grow into the bright and beautiful and amazing child I know she will be. Not that I'm biased or anything ... :)

Here are some blog posts and videos that I was encouraged by today. Please note that they include pictures of the babies right after surgery and it's a little graphic, but it was good for me to see because I needed to be emotionally prepared for what Lucy will look like as well.

http://gabbydanen.blogspot.com/

http://www.onetruemedia.com/shared?p=74994ae7b3443793ecee3a&skin_id=701&utm_source=otm&utm_medium=text_url

http://www.onetruemedia.com/otm_site/view_shared?p=5ef9e5da6405dc8a45aa72&skin_id=601&utm_source=otm&utm_medium=image

http://www.cappskids.org

http://www.jorgeposadafoundation.org/craniosynostosis/journeys/