Power of Prayer

I just wanted to update everyone on Alice. She has had a pretty good week. She's had some rough nights since we have been home from the hospital but overall she is doing pretty good. She got fitted for her helmet this past Thursday. We are supposed to break her in slowly to wearing it. She absolutely hated the helmet at first but now she is adjusting to it. She gets very sweaty in the helmet but hopefully her body will adjust. She really is such a good baby and has handled everything really well this past week. It was really hard on poor Mommy and Daddy but Alice doesn't seem very bothered. It's just like everyone kept saying...babies are so resilient and they bounce back so fast. After we got home Thursday from the helmet place, I felt myself getting kind of down again. It wasn't until my dad called me to see how the appointment went when all the emotions hit and I just burst out crying. I don't know why I am so emotional about it, I guess I just hate that she has to wear it but then I keep reminding myself what the alternative would be, the much larger reconstructive surgery of her skull. Then a friend reminded me that we are still in this journey, it isn't behind us yet and it was ok to feel emotional about things still. It's just been alot...and when you add this to other things going on, it's overwhelming...but we are trying to take one day at a time. This endoscopic surgery was very hard on Jason and I and really most of the family. I pray that the worst is behind us, because I barely made it through this without collapsing , I just don't know how I will handle it if Alice has to have another surgery. We are working on decorating her helmet and personalizing it. I will post pictures soon!

Alice taking a nap in her helmet for the first time

Also, I try to keep this blog for Craniosynostosis awareness purposes only so I can help other families going through the same thing. I usually keep my personal stuff limited to my facebook page, and keep it very brief on the blog, but I do want to take time to thank each of you that have left comments on my facebook page, messaged me in forums or texted me. We appreciate every comment, prayer and offer to help us. Everyone has been so sweet and kind to us. It really means so much to us! I can't say that enough!  The prayers definitely helped sweet Alice and us through a very difficult time.

 I also asked for prayers for my Grandmother on my facebook page recently and I want to thank you all for your prayers for her as well. She has been going through a difficult time and I am so happy that she will be able to go home next weekend after being in rehab! I believe in the power of prayer..so thank you so very much everyone!!!

Alice - 1 week post op

It's hard to believe this is what she looked like exactly a week ago

Review of Craniosynostosis and Our Story

For those who are just finding this page or need a summary of what steps we went through to get to where we are today, here is a review...


May 29th 2013 - Referred to neurologist

 http://coronalcraniosynostosis.blogspot.com/2013/06/the-checkup_30.html

June 11th 2013 - 1st opinion

http://coronalcraniosynostosis.blogspot.com/2013/06/blindsided_30.html

June 18th 2013 - 2nd opinion

http://coronalcraniosynostosis.blogspot.com/2013/06/it-was-confirmed_30.html

June 21st 2013 - fight for endoscopic surgery

http://coronalcraniosynostosis.blogspot.com/2013/06/anxious_30.html

July 8th 2013 - Hope - 3rd opinion

http://coronalcraniosynostosis.blogspot.com/2013/07/hope-in-mary-land.html

July 10th 2013 - Surgery is scheduled

http://coronalcraniosynostosis.blogspot.com/2013/07/hope-in-mary-land.html

July 12th 2013 - Surgery

http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html



What does Alice have?

 Left Coronal Craniosynostosis

Picture of Alice's skull
You can see on the right side of this picture, the suture is fused.
In the endoscopic surgery they opened this suture/recreated the suture

What Is Craniosynostosis?



The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. The function of the suture is to allow molding through the birth canal and adjustments for the growing brain. As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.

Craniosynostosis is a condition in which the sutures close prematurely, causing problems with normal brain and skull growth and premature closure of the fontanelles (soft spots). Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.

What are the symptoms? The most common sign of craniosynostosis is an oddly shaped head at birth or by the time the child is a few months old. For example, the skull may become long and narrow. Or it may be very flat and broad in front or back or on the sides. This oddly shaped head may be the only sign of craniosynostosis.

In rare cases, the deformity causes pressure to build up on the baby’s brain. This can cause brain damage and can make the baby develop more slowly than other children.

The treatment of craniosynostosis requires surgical correction. Craniosynostosis occurs in one in 2000 births.

The different types:

Sagittal Craniosynostosis




Sagittal Craniosynostosis is the most common type of Cranioysnostosis (40%-58% of all cranio cases) and effects more males than females. Early closure of the sagittal suture results in scaphocephaly. Infants will often have a protruding forehead, an elongated head, and protruding at the back of the skull.



Coronal Craniosynostosis







Coronal Craniosynostosis is the second most common form of Craniosynostosis and effects mostly females. Coronal synostosis may occur on either side or may be bilateral. Infant will often have an elevation of the eye socket, flattening of the ridge of the eye and displacement of the nose on the affected side.

Metopic Craniosynostosis







Metopic synostosis is the third most common form of Craniosynostosis and is associated with trigonocephaly with a
male preponderance. The metopic suture is located between the soft spot and the nose. Early closure of this suture results in trigoncephaly. Infants will often have a prominent ridge down the middle of the forehead, a pointed forehead, and eyes that seem too close together.

Lambdoid Craniosynostosis







Lambdoid Craniosynostosis is one of the most rare type of Craniosynostosis. Most cases of lambdoid craniosynostosis
are unilateral and result in asymmetric posterior
plagiocephaly that needs to be differentiated from positional
plagiocephaly.



Frontosphenoidal Craniosynostosis

Frontosphenoidal synostosis is one of the most rare types of Craniosynostosis. It is the small suture close to the eye socket. Premature closure of this suture will result in flattening on the side of the front of the head and can cause an indentation near the temple or eyebrow bones. Frontosphenoidal appears almost exactly like coronal craniosynostosis but the coronal sutures are open. This is believed to be one of the most undiagnosed forms of cranio as a child can appear to have coronal synostosis or positional plagiocephaly but the CT scans will show the sutures are not fused and the child will not be diagnosed correctly.

Multiple Suture Craniosynostosis

Craniosynostosis of multiple sutures accounts for approximately 5% of craniosynostosis. A child can have two or more sutures fused prematurely and is a more complex form of craniosynostosis. Complex craniosynostosis frequently causes increased inter cranial pressure and is associated with developmental delay and a high rate of re-operation.




Positional Plagiocephaly (Flat head syndrome)







Plagiocephaly (PLAY-gee-oh-SEF-uh-lee) is a flat spot on the back or side of a baby’s head. It is caused by pressure on the bones of the skull before or after birth. This usually happens because of the way a baby likes to lie (their positional preference) in their first few months of life.

There are many things that could cause positional plagiocephaly.

Children with multiple medical problems or delayed development may have a hard time changing positions. They are more likely to develop positional plagiocephaly than children who can move around more.

Some infants have a strong preference to look in one direction. This can lead to a limited range of motion in the neck from muscles being tight. This is called torticollis. Babies with torticollis might be more likely to develop plagiocephaly than other babies, since they always rest on the same spot on the back of their head.

Premature infants are sometimes more likely to develop plagiocephaly. This is because their skull bones are softer than the skulls of babies born at full term. They also tend to move their heads less often.

Positional Plagiocephaly does not require surgery and can usually be fixed by repositioning of the babies head while they lay down or sleep and some may require the use of a helmet.



Surgery 

For most infants, however, surgery is the primary treatment for craniosynostosis. The type and timing of surgery depend on the type of craniosynostosis and whether there's an underlying syndrome.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often performs the procedure.

Traditional surgery

The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, usually takes hours.

After surgery, your infant remains in the hospital for at least three days. Some children may require a second surgery later because the craniosynostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces.

Endoscopic surgery

This less invasive form of surgery isn't an option for everyone. But in certain cases, the surgeon may use a lighted tube (endoscope) inserted through one or two small scalp incisions over the affected suture. The surgeon then opens the suture to enable your baby's brain to grow normally. Endoscopic surgery usually takes about an hour, causes less swelling and blood loss, and shortens the hospital stay, often to one day after surgery.

If your baby has an underlying syndrome, your doctor may recommend regular follow-up visits after surgery to monitor head growth and check for increased intracranial pressure. Head growth will be routinely monitored at well-child visits.

The day we came home from the hospital.
Two days after her endoscopic surgery
WOW! What an improvement!

Surgery

The evening before the surgery and the morning of was extremely nerve racking, I was sick, could barely eat...all kinds of thoughts and fears were racing through my head. All I wanted to do was spend time with Alice and hold her and kiss her. I was terrified beyond belief. I was about to put my baby girl in the hands of strangers...and had to trust that she would be ok. Not an easy thing to do...and as a mother I wanted to be there with her every step of the way and I couldn't.

The drive to the hospital from the hotel seemed like eternity, my stomach kept rolling over and over...I just wanted to call up the staff and cancel the surgery because I didn't want her to go through it...but I knew this was not an elective surgery and she had to have it. She was scheduled for surgery at 11:15am and we had to be there at 9:15am. I could feed her clear liquids up to 7:15am, thank goodness that included breast milk. We checked in right at 9:15am. We had to go to an eye doctor right before surgery, so we did that first and came back down, got called back to pre op around 11:30. Where we waited for two more hours. In this time Alice was getting very hungry, it was almost unbearable listening to how upset she was...and I couldn't hold her because she would think I was going to feed her. The one thing I wanted to do and I couldn't. They tried bringing in a baby stimulation machine to distract her which worked for a little while. Then around 1pm the process started rolling very quickly. Jason and I starting to crumble. They said they had to take her now and told me to give her one last kiss, we both did. Then we watched them carry her down the hall as she looked back at us, clueless to what was about to happen. When they turned the corner we fell apart. I thought I was going to collapse...I was shaking so much. I have said this many times but this is unlike anything I have been through before, or Jason...it was extremely hard and emotional. I had to have faith in the staff to take care of her...I prayed that morning like I have never prayed before, over and over and over...

stimulation machine

Daddy trying to comfort her before the surgery

Jason and I went outside for a while to try and collect ourselves and not long after we heard that the surgery was going well and they were almost done. It seemed like an eternity...however from the time we left her until we saw her in recovery was about 3 hours. I could barely contain myself as we headed back to see her...she was so pale and limp. My eyes filled with tears and we tried to stimulate her but we didn't get much of a response...this went on for a very long time. The nurse began to get concerned and said it was taking longer than usual for her to wake up. She was ghost white and lethargic. She was on the verge of needing a blood transfusion. Dr Magge came to see her and said he would give her another hour and then they would retest her blood to see how her levels looked. Thank goodness in that hour she began to come to. She was in recovery for a total of 5 hours. She was admitted to a room around 10pm. Mommy and Daddy were both physically and emotionally drained.

right after surgery

still trying to get her to wake up

slowly starting to wake up

                                 

A little playtime in the middle of the night :)

Alice had a rough time in recovery and through the night. She threw up several times. They gave her morphine initially, antibiotics and nausea medicine. She was still pretty out of it. Jason and I both slept in the room with her both nights. They had a camera on her bed and lots of monitors! We finally ate a little something for dinner and then fell asleep. We woke up around 3am and I tried to feed her...she did ok, showed alot more interest than in recovery but then she threw up again. Shortly after that she perked up though...and even gave us her first smile since surgery. I can't tell you how much I needed to see that smile! We all went back to sleep and when we woke up the swelling had hit...

Morning after surgery

Mommy and Daddy with Alice. Relieved that the surgery is over

her incisions

A little smile

Playing with Daddy

Kisses from Mommy

Her swelling got worse through the afternoon. Dr Magge removed a strip of her skull to recreate a suture from the middle of her head all the way to right above her ear, endoscopically. So she swelled all along that area and her eye was swollen shut. Her eye swelling improved slightly through the day and by the next day it was extremely better! She was actually able to open it.

Day one (left) Day two (right)
You can see in both pictures that she is swollen along the right side her face, where the bone was cut

Alice's bed at the hospital

sitting up in bed

Alice with her Children's National Medical Center doctor bear, her souvenir :) 

We were set to go home but we had some blood pressure issues, it was kind of all over the place so we waited around for a while and wanted to get it redone and make sure all was ok, since we live 2 hours away, we wanted make sure she was good to go. We got the green light and we were on our way. 

I am so thankful we were able to find Dr Magge...it seems like it all fell into place the way it was meant to be...and it was so much closer than Boston which is awesome for return visits! Dr Magge is such a sweet, kind and wonderful doctor...I couldn't say one bad thing about him. If he has a flaw, which I don't even consider a flaw, is that he works to hard! It seemed like he never went home and like he slept at the hospital. We teased him about this but he reassured us that he did go home to sleep. He is such a great man, I would highly recommend him to anyone that is wanting their baby to have endo surgery for craniosynostosis, the larger surgery or any other neuro procedure. We are beyond blessed that he agreed to meet with us so quickly, got the surgery set up quickly and he was just so good to us. I know Alice was in good hands. 

I set up this blog web address with this long name because I wanted other parents going through this to be able to find this site in a search and to know that there are options out there. This 3 month window for endo surgery that is suggested throughout most practices doesn't mean you have to accept it. I fought to have this endoscopic procedure done for my daughter because I deeply felt like she was mild enough that it could help her. There are very few doctors out there that will push that 3 month window but it is worth looking into. I pray that everything works out and that she won't have to have any more surgeries. 

She gets a post op measurement for her helmet this week and should have it by Friday. Although I know it may be challenging, I still feel it was a better option for Miss Alice Mary versus the larger surgery. Please keep her in your prayers...pray that the worst is behind us and that she will be ok. I don't know if my heart can take anymore...these past few days have been some of the hardest of my entire life. 

The lobby/atrium of the Children's National Medical Center

For parents out there that are looking for info... to my knowledge, the doctors that will push the 3 month window for endoscopic surgery for craniosynostosis are below (up to about 5 months). All three of these doctors/practices were willing to do the procedure on Alice. Please know that this is case by case and the doctor must make the final call...

Dr Suresh Magge - Washington DC  http://www.childrensnational.org/research/faculty/bios/cgmr/magge_s.aspx

Dr Mark Proctor - Boston, MA
http://specialists.childrenshospital.org/Default.asp?PageID=PHY000563

Dr David Jimenez - San Antonio, TX
http://neurosurgery.uthscsa.edu/display_faculty_staff.php?ps_id=12&pg=faculty_and_staff.php

Exhale

I feel like I can finally breathe again. These last two days have been two of the hardest days of my entire life, especially yesterday. It was hard to have patience being as nervous as Jason and I were but we had no choice. We waited from 9am until 1:15pm until she went into surgery. She had not eaten since 7am. It was almost unbearable waiting all that time and we felt horrible because she was so hungry. I am going to write a very detailed blog about yesterday's events after we get home, when I have time to collect my thoughts and share with you what we went through and post pictures of the journey. Last night Alice was not doing well and was in recovery for a very long time, longer than most, and was close to needing a blood transfusion but after a few hours she finally started to improve. I know all of your prayers helped her do a 180, so thank you all so much for keeping her in your prayers. She smiled this morning around 3am for the first time since surgery, what a relief that was! She must have known that Mommy and Daddy needed to see that sweet smile. She is very swollen and has a black eye today but you would never know it by the way she is acting. We even got a little giggle out of her today. They removed the head wrap and overall she is doing much better, her coloring came back to her face, she was ghost white last night and vomited several times. We could be going home very soon as long as her stats stay stable and she continues to eat well and be alert. We will keep you posted and I will update the blog with more info as soon as we get home. Thanks again everyone for your support.

Here is a picture of Alice and I. She's showing her displeasure about surgery before heading to the hospital. Below that is a picture of the Lincoln Memorial that we passed on the way into town. Just one of the sights we saw on the way to the hospital. Hope to come back and see more with the whole family when she has post op appointments.

Just breathe

Today was rough...an extremely long and emotionally draining day. I wish I could say that the worst part is over but it's not. It was hard enough to see my baby have blood drawn from her arm and have the CT done...I just don't know how I'm going to find the strength to even stand tomorrow but I guess my motherly instinct will kick in and give me the strength I need. She did great today during the CT, and thank goodness she didn't have to be sedated for that...she was able to hold still enough for it. We were at the hospital from 12:45pm until 5pm today and I am drained, have barely eaten all day because of my nerves...I can't imagine how I'm going to feel tomorrow.

Please pray for our sweet Alice. I am more nervous than I have ever been after signing all those forms and hearing a detailed explanation of what is going to be done. I wish that she didn't have to have surgery and that it was optional...but it's not. Unfortunately this problem won't go away by itself. I just really wish she didn't have to go through this....or that I could take her place.

Here are some pictures of Alice during the CT and a cell phone picture off the computer screen of her skull. (I will post a better one later) You can see where the skull is fused on the right side and open on the left side, just confirmation of what we already knew.

I can't thank everyone enough for offering to help us in any way and of course for the prayers. I hope those angels of hers are on their way to DC.

Here we go

Please pray for me


Well, the nerves are starting to kick in high gear. We received confirmation of Alice's surgery this morning, it will definitely be on Friday. We have a pre op appointment with Dr Magge on Thursday as well as a CT scan. We met with the company that is doing the helmet fitting this morning and apparently that is going to be like our second home for a while, with all of these helmet appointments, it's alot but I still feel like this is the right move.


So, what exactly is going to be done with the endoscopic surgery? Here is more info...

This surgery is the least invasive approach. For this surgery to be the most successful it is advised that surgery be performed on an affected infant before four months old and no later than six months old.  Surgeons will utilize an endoscope through two small incisions measuring about 1.5 inches each at the top of the head. A segment of bone is removed near the fused bone and in a few other places which releases the fusion. No plating or reshaping is performed. (like in the larger surgery) Instead, in the first week after surgery, a custom molding helmet is made, which the patient wears for up to a year.

The pro's of the endoscopic surgery are:

-Decreased operative time (1.5 hours or less vs. usually 5 or more hours for the larger surgery)

-There is usually no need for a blood transfusion, and much decreased blood loss

-No plates or screws are needed

-Shortened hospital stay (vs larger surgery)

-Smaller incisions which have significantly reduced scars

  I am so overwhelmed right now, I'm having a hard time functioning. I have so much to do but all I want to do is hold Alice.  I am sad about leaving my other two children as well. I know they are worried in their own way about their baby sister and have anxiety about us leaving them. We have never left them for more than a night so that's going to be hard, but they will be in good hands. Tomorrow night I want to spend some quality time with Alice, maybe even take her for a swim in the pool at the hotel and just try to forget what is about to happen for a little while. It's going to be a rough night...not being able to feed her if she wakes up or in the morning before surgery.  Jason and I both broke down crying last night just imagining that moment when they take her back for surgery...that's going to be very hard on us both. Then after the surgery, seeing her and not really knowing what to expect...hearing her panicking cry is going to make me crumble into a million pieces. I am trying to be strong but in reality I am just not that strong of a person. I'm trying to make a list of things to bring to comfort her, to make her feel like she's at home, even though I suspect she won't be able to see, at least out of one eye. She will be swollen I know, I just don't know to what extent. 

Please pray for Alice Mary, pray that she's not in pain and that she's not scared and that all goes well with the surgery. Pray for Jason and I to have the strength to get through this. We really appreciate all the comments, messages and texts that we have received from family and friends and even complete strangers. It really means so much to us that you are keeping our baby girl in your prayers. I will try to update the blog when I am in DC after the surgery.  Thank you all for your support. 

Hope in Mary-land

Whew...what a long and nerve racking drive it was to Maryland to see Dr Magge today. Lots of construction and it took a very long time to get there. Jason and I have both been very emotional leading up to today...and we were feeling like the appointment wasn't going to go the way we wanted it to... especially after getting an email from Dr Magge last night that sounded like he wouldn't be willing to do the endoscopic surgery...but we had to go either way for insurance purposes because if he said no, then we would be approved for Dr Proctor, a stepping stone, more or less, to Boston.

I kept looking for guidance, praying, begging for some kind of clarity in making this decision between the endoscopic surgery or the larger surgery and trying to decide on which Doctor. As we approached the Maryland state border, I looked over and saw the welcome sign...and it just hit me. Welcome to MARY-land is what I saw... Mary is my grandmother that passed away not very long ago and Alice's middle name was also in honor of her, Alice Mary. I couldn't help but feel like it may be meant to be as we drove past the state line. As we anxiously awaited Dr Magge to come in the room, my stomach kept rolling over and over, I was nervous, very nervous. Dr Magge did call me several times this morning before the appointment to talk about Alice, because I had sent some pictures and he let me know that he wanted to try and get a CT today, if possible...but it turned out it couldn't be done today, he said that we could reschedule the appointment to later in the week when we could also do the CT...but I told him we were coming today anyways because we needed an answer TODAY. I already had a great feeling about him from speaking to him on the phone...and Dr Proctor from Boston also told me we were in good hands. He walked in and within the first ten or fifteen minutes Jason and I both thought he was leaning towards not doing the endoscopic surgery and really trying to explain why he should do the larger surgery on her. Then after examining her and talking more he had a change in his tone...he said, I initially thought leading up to this appointment that there was no way I would be able to help her by doing the endoscopic surgery but after seeing that she has a very mild case I am willing to do it....I started tearing up, I tried to hold it back....but I wanted to jump up and hug him. I was so relieved, not only did I have two doctors willing to do it, now I had one that was within 2 hours of my house, which would make return visits so much more convenient and affordable. This is what I have been fighting for...and to know that all my effort, research and work I put into this was all worth it made me feel very proud of myself...

Now, Dr Magge did discuss in great detail the pros and cons of each type of surgery. The endoscopic surgery is less invasive, less blood loss, less hospital stay and less time under anesthesia. The best results are when it is done before 3 months of age, which is why it is hard to find a doctor willing to push that window. But I felt in my heart that Alice was a mild case and that she would benefit from this surgery. She will have to wear a helmet...which will hold back/restrict the side of her skull that has grown outward while allowing the other side that is fused to catch up, so to speak. The helmet therapy may last up to 18 months of age, and I know the helmet may be challenging at first but I feel that it's worth it. The only concern, especially with the type of craniosynostosis that Alice has, is that we won't be happy with her result, appearance wise...but, that is something that we can address later...yes that would require another surgery, a larger one, but there is a chance that the endoscopic surgery could be all that she needs. It's really a case by case thing...and you don't know until a ways down the road. Later, if needed, her brow bone would possibly have to be moved outward. With the larger surgery the skull is physically taken out, reconstructed and smoothed, plates are put on it and then it is put back in (seriously? Just a little overwhelming)..but everything is fixed at once, no helmet therapy for months but a MAJOR reconstructive surgery.

I kept reading on forums from other moms that if they had the option to do the endoscopic surgery they would in a heartbeat, but most of them didn't have the option. That stuck with me...I even called Alice's pediatrician right after the appointment and she said that is what she would choose for her child if given the option. So...that is the plan...and it could be happening as soon as this Friday. I will know for sure tomorrow and will update the blog when I know.

My grandfather, that was married to my grandmother Mary, passed away in September, just 10 months after her...he was cremated and because of various family conflicts we kept putting off the burial of his remains. It has been scheduled for this Friday, July 12th for a while now. After talking to my Aunt Elizabeth, I can't help but find it ironic that Alice's surgery may fall on the same day... maybe this is what he wants ,and that's what is meant to be...it's almost like I had signs from both my Mema and my Grandaddy in the same day, finally giving me some guidance. While I hate to miss the graveside service, if the surgery happens Friday, I know this is what they would both want for Alice Mary.

Thank you Mema and Grandaddy for giving me the clarity and guidance that I needed.

Waiting for Dr Magee to come in and see us