Tuesday, July 30, 2013

Post Op-timism


Since we had to go back to Maryland for Alice's appointment we wanted to make a mini vacation out of it and decided to go to Baltimore and check out the Inner Harbor and the Aquarium. It had been years since Jason and I had been there and my mom came with us too! Cassidy and Trevor loved the aquarium, especially the dolphins. The rain forest area and the dolphins also caught Alice's eye. She fell asleep through most of it though. It was nice to do something as a family and have some fun after all the stress and worry we have been through. We have been completely consumed since getting Alice's diagnosis and we haven't been able to do much with the two older kids on their summer vacation. So we really enjoyed having some quality time with them. It's hard to believe that Alice is officially 6 months old now, my how the time has flown by!!



Alice sleeping through some of the aquarium


Alice wide awake at the dolphin show

 
By the water at the Inner Harbor


Aquarium photo



I am so glad that my mom was with us when we went to the post op and she was able to meet Dr Magge. My mom and dad were unable to be there for Alice's surgery since they were caring for our other two children but we were so grateful that my mother in law and her friend were able to be there for Alice's surgery. They traveled from NY to be there for us.



 Dr Suresh Magge - Alice's 2 week post op visit


Dr Magge came in and took measurements of her head and checked to make sure her helmet was fitting correctly. He said it needed to be adjusted so that there was a little more contact on the right side of her head, to essentially hold that side back and allow the other side to even out. (we had her helmet adjusted today) He thought she looked pretty good and also noticed that her facial structure had improved. With Unicoronal Craniosynostosis the face often deforms since one side of the skull cannot grow outward it affects the eye, nose, mouth, forehead and even the ear on the affected side...and it would have only gotten worse over the next few months if we would have had to wait for the larger more invasive surgery. We knew going into this endoscopic surgery that there was a higher possibility of Alice needing to have another surgery, which would be a very large ear to ear incision. By her having the endoscopic surgery at a later age than most babies, her odds of another surgery only increased. So I asked Dr Magge...if she needed another surgery, at what age would that be. He said that he feels optimistic that she may not need another surgery, he feels her results will be good since she was a mild case to begin with. Praise the lord! That is the best news I have heard in a long time.


Alice's new decals on her helmet


As we were leaving the office I patted myself on the back...I have never felt more proud of myself. I refused to accept that we had missed the window for the endoscopic surgery and I fought for her. I would have gone all the way to Texas to get the surgery if that's what we had to do but thankfully we found Dr Magge. All of the phone calls, emails, research and hard work finally paid off. I know it is not a guaranteed thing and that there is still a possibility of another surgery but hearing that Dr Magge is optimistic makes me feel great.  I sure hope he is right and that the helmet does what it needs to do and that we are on the other side of this Cranio-land journey!! I can't thank each of you enough for your prayers, it means the world to us. 


If you would please add my Grandmother to your prayer list I would appreciate it very much. She is in need of ongoing prayers....and my mom could use some prayers for her surgery tomorrow too. Thanks so much.






Thursday, July 25, 2013

The Helmet

So like I said in my previous post, I was emotional about the helmet at first...Jason wasn't too hot on it either. It's like, we fought real hard for this endoscopic surgery and we weren't really thinking ahead to the other challenges...we just knew we wanted Alice to have the less invasive surgery done. It took a pretty long time to get the helmet fitted properly...lots and lots of adjustments. Alice didn't seem phased by the helmet initially but now she is starting to pull on it and cry at times when she is uncomfortable or hot. The doctor did say that her body will adjust to the helmet in a few weeks...at least there are vent  holes in it.


Alice Mary - 4 days after her surgery


Her first day in her helmet - 6 days after surgery

We're supposed to work her up gradually over a few days to wearing the helmet. (1 hr on 1 hr off, 2 hours on 1 hour off, 3 hrs on 1 hr off, and so on...) Have her take naps without it initially, then naps with it and then sleep in it overnight. (she slept in it for the second time last night) She is supposed to wear it a total of 23 hours a day! I really didn't think it would be that much and I will admit I needed to adjust to it and gradually work up to it myself. I hated that my baby's head was covered up, that I couldn't see her beautiful eyes very well and that I couldn't put hair bows on her anymore. I really don't care what people think when they see her in it but having to answer questions and stuff was hard. So I decided to order a decal for her helmet with the blog web address and will also be ordering extra stickers/cards to hand out so I can briefly explain it and then guide them to the site for more info. After all my whole point of creating this blog was to educate people about Craniosynostosis and help those going through this journey and let them know the steps we took to get our daughter's treatment. Of course I had to add a feminine touch to the helmet too! I have quite a few flowers and bows that I have applied velcro to so I can switch them out accordingly to match whatever she is wearing. I have faith that this helmet is going to help Miss Alice Mary and the endoscopic surgery was the best decision for her.  Alice has already been through so much in 6 months of life, more than most people go through over a period of years. I am praying that things go up from here...




Big sister Cassidy feeding Alice a bottle

Hanging out with her big brother Trevor


Taking a nap with Daddy


Pink flower :)



Alice with her Care Package from Cranio Care Bears
http://craniocarebears.org


Alice with her headband from Cranio Angel Network
http://www.cranioangelnetwork.com

Saturday, July 20, 2013

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




Wednesday, July 17, 2013

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!






Monday, July 15, 2013

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


                                  video
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...



Saturday, July 13, 2013

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.

Thursday, July 11, 2013

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.

Wednesday, July 10, 2013

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.