5 months old

I usually post on the 27th of each month, but Lucy had her regular doctor's appointment today instead of Friday so I waited. :)

So we took her today for a regular visit, complete with a shot. She did very well and the only side effect I noticed is that she took an extra long nap late this afternoon.

She weighed 15lbs and 5oz! I was so surprised. I only expected her to weigh almost 15lbs, but not over it! Awesome. They didn't take her length or head circumference since it was a "vaccine-only" visit.

We still haven't gotten her blood typed yet. I'm procrastinating because I don't want to have to watch her get her blood drawn, but I know I need to do it so I'm just going to force myself to take her in the next week or so.

The only other doctor update is that we made an appointment with a pediatric opthalmologist on October 1st so he can check out her occasionally wandering eye and get an idea for what it's like pre-surgery so he can better assess her post-surgery needs.

I feel like she is just growing up so quickly. She is eating about every 3 hours during the day instead of 2 hours like she had been. I think next month we might start introducing rice cereal and then other baby foods. She is also trying to sit up on her own and "talks" more.

And since no post would be complete without a picture, here we go! :)


Eating her toes is a new fun activity.



She loves to "sit up" and we keep letting her practice in safe places and we feel like she'll get it on her own soon!

4 months old

Lucy is 4 months old today! She had her 4 month check up, and she was 13 lbs. 10 oz, and she is 25 1/4 inches long. Here's a picture of my beautiful (sleeping) growing girl.


And here's a picture of her swimming with her Aunt Kayla.


Nothing new on the medical side of things. We got an order today from our pediatrician that we have to take to Children's Healthcare to get Lucy's blood typed, so we know who will match with her.

Thanks to everyone for keeping up with us.

A date for the surgery

I got a call from Dr. Wrubel's surgery scheduler yesterday ... we have a date!

Barring any obstacles or changes, the surgery is set to take place on Friday, November 19th, at 7:30am at Children's Hospital of Atlanta at Egleston.

It feels great to finally have a date in my hand that is tangible. She said that we would need to do a lot of pre-op stuff around 14 days before the surgery. Once we know Lucy's blood type, we'll have to find people that are a match (we hope Wesley and I will be a match, but you never know) and we'll have to give blood that they can use in case she needs a transfusion during the surgery.

It means I'll spend my birthday (November 21st) in the hospital with her, but I can't think of a better birthday present than seeing my baby girl finally be done with surgery and on her way to recovery. It also means we'll be getting out of the hospital on or around Thanksgiving Day, but again ... we will have so many things to be thankful for this year!

I am also thinking that I would love to set up a system where people can sign up to pray for her in 15 minute increments the whole time she is supposed to be in surgery. I know that's a lot of 15 minute increments since the surgery will probably last 5-6 hours, but I think it would be awesome to know that people everywhere are praying for her the whole time she's in the operating room. I'll try to set that up closer to the date of the surgery.

Here she is at 3 months old ... she's getting so big and growing up so fast!

First visit with Dr. Wrubel

The visit today with Dr. Wrubel went very well! Wesley and I actually got to enjoy eating breakfast together at Einstein's Bagels because we got to the appt. so early. Lucy was a complete angel -- even though she hadn't eaten since 6:30 this morning. She got through the whole appointment without crying and I was able to feed her in the car before we went home.

Another nice thing was being in the waiting room and seeing a lot of other young couples with their babies who have other problems, too. We couldn't tell if any of the other babies had craniosynostosis (I think some of them might have) but everyone just seemed really positive and it helped me to remember again that we're not the only ones going through this.

We met with Dr. Wrubel's physician's assistant first, a really nice young lady. She just asked some preliminary questions and then we met with Dr. Wrubel. There wasn't a lot that we hadn't already talked about with Dr. Mackay. He said he was going to refer us to a pediatric opthamologist because Lucy's eyes are not exactly straight and they can kind of wander or not be looking in the same direction all the time. I asked him about the orbital advancement (the additional procedure where they move the bone around the eye sockets forward to compensate for how far back that part of her face is now). I didn't know how her eyes would look if they just moved the bone forward, but he explained that the lining around the eye sockets is attached to the bone so when they move the bone forward, the eye sockets will come along, too. He said that her eyes might look a little "funny" until everything has kind of grown into the right place, but then it should be okay.

I asked him about the possibility of having to go back in and do an additional orbital advancement or having to fill in the bone ... when the surgeons do the orbital advancement, they are making an educated guess about where to place the bone based on the child's facial growth and how they think it should look and where it should be. But I had heard recently from a lot of other parents whose children had that same procedure that almost all of them had to have a second surgery to put in bone or tissue to fill in the gaps where the bone did not grow like the surgeon thought it would. He said that it's about a 10% chance that she'll have to have another total orbital advancement and about 15-20% that they'll just have to go in and do some filling in for more cosmetic reasons. I'm praying it's going to be 0%. :)

He said that her head is really growing up a lot (he called it "towering"), and if that continues then they may have to reshape the back of her head, too, when they do the surgery. And he confirmed that the surgery would take place in November or December. Before we left, we met with his surgery scheduler and she asked us if we had any particular date that we wanted, or that we wanted to avoid (especially since it will be the holiday season!). We just told her the sooner the better! So if we're unavailable for Thanksgiving or Christmas this year, I'm sure everyone will understand why. :)

We probably won't see either doctor again until right before the surgery date, unless there is a reason for us to. I'll try to update this blog every month just with how things are progressing and add pictures of Lucy as she grows ... so everyone can be updated and for us to have a record of how she has changed.

Thank you to everyone who continues to support us, pray for us, send us sweet messages and encouraging Scriptures. You will never know how much it strengthens my heart and Wesley's heart to know that we're not doing this alone and that so many people care about us and about our treasure, Lucy. God is very powerful and His word never returns void, so we just continue to pray Scripture over her and we believe it to be true!

First visit with Dr. Mackay

Today was our follow up visit with Dr. Gregory Mackay, who does the reconstruction part of the surgery for Lucy's condition. We got there in plenty of time but we ended up having to wait for at least 40 minutes to see him. Why do doctors make you wait so long? I would even be okay if they were honest and said, "It's going to be 40 minutes before we can get you back there" because I would know that I had time to nurse her or change her diaper or whatever. Instead they leave you hanging and then you never know when they might come a'callin'. Oh well. That is totally unrelated to the visit and totally related to my pet peeves.

Dr. Mackay's PA saw us first and she took some pictures of Lucy's head from all different angles. Then Dr. Mackay came in and just talked to us for a while. He basically said what we already knew -- that the surgery would take place anywhere from 9-11 months old. He said they waited because the later they wait to do the surgery the less chance that she would have to have another surgery again. He was glad to hear that her genetic tests came back normal. What I think is a huge praise to God's healing in Lucy already is that he said she has a lot of midfacial retrusion and bicoronal craniosynostosis, both which are usually associated with a syndrome of some kind. But he said they can both also happen randomly, too, and it appears that in Lucy's case those two things are random (assuming the genetic test results are valid, and I am assuming they are!). But it just makes me really glad to know that she has two things that normally go along with another kind of syndrome, but she doesn't have a syndrome.

But because of the midfacial retrusion the surgery will be just a little bit more extensive than a normal craniosynostosis surgery. They will actually have to take the bone around her eye sockets and move it forward so it can match the growth of her forehead. He said he would almost overcompensate when he places the bone so for a while it will look funny until the rest of her face catches up with where it's supposed to be. But he said that it was pretty common to have to do that. He said she might have to have another surgery around her eyes when she is 7-9 years old, but that sure is a lot of time to pray and for God to answer our prayers that she won't have to have another surgery.

So the encouraging thing is that he was very reassuring -- he's been doing this since 1995, and he said he's never ever had a complication -- and he showed me a bunch of pictures of kids that he has done surgery on and they all look completely normal and you would never be able to tell they ever had anything wrong. He said that we would set a date soon for the surgery and it would probably be sometime in November or December unless Dr. Wrubel (the neurosurgeon) thought it wise to do it earlier based on her brain growth or swelling, etc. The part that's hard is that the surgery is a little more extensive and she might not look completely "normal" for a little while longer than we thought. Also, he made it sound like they would do the surgery and then it would be a lot of "wait and see" -- waiting to see how the bones in her skull fuse on their own, and if they don't they have to go back in and basically put in some artificial bone ... waiting to see if her head will conform to the shape they want it to be and if it doesn't they will have to go back in and do more surgery. So there are a lot of what if's, but I believe in a God that is in control of all the what if's and I trust that if He can form the entire world, He can certainly mold my baby's head to the correct shape (and even unfuse the sutures still if that is what He desires!).

Wesley was able to go with me and it was really nice to have him there, both emotionally and logistically (he can help carry all the stuff ... haha). I'm so glad I have such a strong and loving husband, not only just to go through life with but to go through trials with.

I'll end this post by saying that I've been reading a lot of blogs lately of other families whose children have conditions that are much more serious than anything Lucy has, and it has given me such a new outlook on my attitude. Yes, finding out that Lucy had craniosynostosis was a huge shock and it was emotional and hard and there are lots of emotions that I share in common with these other moms whose stories I am reading. But Lucy can have surgery and then it will be almost as though nothing was ever wrong. These other families are facing much more painful decisions -- like if their child will make it to her first birthday. It's amazing when I pray for them that my own problems pale in comparison and I am grateful for the smallest things that I have. It's also amazing to see their strength and humor and faith in the midst of these trials.

I joined a women's summer Bible study and it is going to be on the book of James. I started reading the first chapter to get prepared and this verse stood out to me and I will end this post with it:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." -- James 1:2-4, The Message

Great news!

I finally heard back from the geneticist today. This was after I left her three messages asking for our test results that were due. I guess it pays to be persistent sometimes.

They just tested her blood for mutations in the FGFR2 gene. Here's a little bit about that from Wikipedia (not that I get my medical information from Wiki, but you know it's helpful sometimes):

"Fibroblast growth factor receptor 2 (FGFR2) is a receptor for fibroblast growth factor encoded on a gene residing on chromosome 10. Mutations in this gene are associated with Crouzon syndrome, Pfeiffer syndrome, Craniosynostosis, Apert syndrome, Jackson-Weiss syndrome, Beare-Stevenson cutis gyrata syndrome, Saethre-Chotzen syndrome, and syndromic craniosynostosis."

Like I said previously, they were concerned that her craniosynostosis might be a result of a genetic mutation since we do have another family member who had it. But everyone in the hospital was pretty confident, just based on the way she looked and the lack of any other obvious symptoms, that there was no genetic mutation.

So, the geneticist finally called me back today (on the way to the mall!) and she said that the test results came back and they are normal!!!!! It wasn't a big shock to me, really, but it was comforting to know just the same.

She said that we can schedule an appointment and they can decide then what other tests they want to run, if we want them to. But Wesley and I both agree that there's really no need to run any more genetic tests. We're pretty sure that nothing else is wrong with her and it makes us feel better that doctors said the same thing. I don't want to put her through any unnecessary poking with needles if we don't have any suspicions.

That's great news!

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/