September 8, 2014

Bailey Update


I have had a couple people email me or comment recently about an update.  For those of you interested in seeing Bailey apart from these two pictures, I do keep up my sewing/life blog at  There are always updated pictures of my kids there :).


Bailey just started kindergarten and will be 6 next week!  How fast the time has gone!

Here’s a recap that might encompass some questions you may have:

-Bailey lives a full and wonderful life.  She is full of energy and restricted in no way!  And she is so very smart.  She talked earlier than my boys and is definitely developmentally average or above average.  You honestly would not even be able to tell physically or cognitively that she ever had anything wrong with her head.

-She has thin hair and so I notice the scar more than others, and her hairdressers notice it, but other than that, everyone else is oblivious to it! Her head shape is beautiful and doesn’t look abnormal at all.

-She had one follow-up appointment after surgery and after that, never again.  After she was fixed, she was fixed for good ;).

So basically, the point is, you would never know anything ever happened and she is completely normal in every way:). 

It may be of interest to mention that we have since added a little girl to our family.  Ruby Jane was born June 6, 2013.  We were so worried that she would also be born with craniosynostosis.  However, she was not.  It was one of the first questions we asked when she was born, and they did try and see if she had it on our ultrasounds.  Unfortunately, she was born with a more serious condition called Tetralogy of Fallot.  It is a congenital heart defect (CHD) that went undiagnosed during pregnancy.  I did meet one person who had twins—one of them was born with craniosynostosis, and the other with Tetralogy of Fallot.  How interesting that was to hear—it seems that there is a possibility that the two can be related somehow, as sometimes those born with a CHD can also have cranio facial problems.  Ruby had her open heart surgery in December and is also thriving.


January 31, 2010

How's the Bean doing now?

She's great! And so much fun!!! She is now 16 months old!

I just thought I'd post a little update on the Bean. It's been nearly a year since I've posted, and this will likely be my last update, though I'll still receive any comments or emails from anyone who wants to contact me! I don't know that many people even find this blog, but I am thankful that a small handful have, and I hope it has helped whoever has found their way here!

I occasionally see pictures of Bean on our screen saver from her surgery. Today, I was thinking of the immense amount of pain that she had to go through, and it still makes me cry to think about. Of course to her, she has no memory of it, thankfully!

I did meet a couple with two kids from my son's elementary school. They told me something that I thought might be of some interest to those who find their way here!

I was sitting by them in a little assembly, and their son who was just about 9 months old was wearing a helmet. I'm sure those of you researching Craniosynostosis have come across the different options you have available and might have even discussed it with the Neurosurgeon. Sometimes I think, "Maybe we should have gone the lesser invasive route, because maybe it wouldn't have been so painful. Yes, she would have to wear the helmet, but wouldn't that be worth her not having to go through all that pain?"

I asked the couple about their son and mentioned my daughter had the same thing. That instantly got them talking. Their first daughter had sagittal craniosynostosis, and she had the same surgery as Bean. It was early enough to not have to remove the whole skull and reshape it, but it's still a really, really hard thing to have your child go through. Well, obviously, their son had the lesser invasive surgery, where they make the smaller incisions, and do less work, and then he had to wear a helmet for a year. Their son was on his second helmet. **I did read about this though--that your chances of having another child with sagittal craniosynostosis do increase after already having one with it. So it was with this couple.

I asked them, "OK, now that you've done both surgeries, if you had to do it again, which surgery would you choose?" They both completely had the answer ready. They said they would do the surgery that their daughter had--the same one as Bean. They said that the pain and swelling for their son was the same. That it wasn't easier at all for him. And now he has to wear a helmet for a year or longer. They were completely sure that they would do the same one as Bean and their daughter. That made me feel a lot better. And also maybe more prepared for any future children we might have. Oh, how I hope we won't have to go through that again, but I know the Lord will prepare us and bless us, as He did with Bean.

To those of you with children having the surgery, of course I'd totally suggest going with your gut feeling, and what the Neurosurgeon suggests. But for me, that story above really made me thankful that I had talked with them and learned their opinion, so hopefully it will help someone else as well!

Bean is doing great. What a blessing modern medicine and wonderful doctors and nurses are!

Best Wishes to all who stop by this blog!

February 8, 2009

Like it never happened!

I get questions all the time on how she's doing, and for her, it's like it never happened--thankfully! Her head is much wider than before. She looks great. I was looking at her before pics today, and really, her head shape is amazing now.

Her hair is slowly coming in, so from the front, the scar is hardly noticeable. The scar tissue is a bit thicker on the sides, so you can feel a bump. I think it's worse on the sides because that's where she rubbed the stitches out when turning her head, so it didn't have as much time to heal before the stitches were gone. Up on top is where the scar looks the best, which is where the stitches stayed the longest. The scar is pink, and sometimes turns red, but nowhere else around it is red and she seems to be in no pain when that happens so we aren't concerned about that since it's all the way healed and she has no fever or anything.

The space that they cut out is much smaller now. You can still feel a little space down the middle, but it's small and very bumpy feeling.

She is one of the happiest babies. She is so smiley and laughs so easily and is doing awesome! No side effects, and I'm sure no memory of it for her at all. I've tried to find some pictures that show what the scar looks like now. I'll try and take some better pics so you can really tell how it's healed. Because looking at the post titled "Stitches", it doesn't look like that anymore. So I'll take some pics and post those later.

This is the best pic I can find of the side view of her scar how it looks now.

Can barely see the scar here, but it kind of sticks out further on the sides.DSCF2570

From the front you can't even tell. But this pic also shows how much wider her head is now than before (check out the 2 month pic of her below, before the surgery).DSCF2692

December 9, 2008


Her stitches, which were numbered around 85, are starting to come out now! Especially on the sides since that's where she turns her head and rubs it on things. I also included a picture of the side shot of her head shape. It's looking so good! She's doing great :).
DSCF2267 DSCF2273
I wish I could hug each and every one of you who have been praying for us all. You will never know how much peace that has brought to our lives. It has been amazing.

December 1, 2008

Bone sticking out

We did wonder, after the swelling had gone down, what the heck this bone was doing jutting out of her head. We went for an appointment today and they told us to give it at least 6 months. Even just a few days after these pictures were taken, the bone started to smooth down a bit, or whatever it did, it doesn't stick out so far. He said it was one of the corners of the bone where the finger-like cut was. I'm so glad it's nothing serious. He said if it bothered her when she's older, like 1 1/2, they could really fix it easily. I'm sure she won't mind, as it's not bad now at all, just a little bump. It was sharp originally though. I just didn't want it to break the skin! I didn't mind how it looked!
**Update--just a couple weeks after this post, the bone had flattened out quite nicely. I don't even know where the spot was anymore by feeling. It totally resolved itself:). Yea!

Recent Pics of Bean

I just love my kids to death. I got all teary-eyed the other night thinking how lucky we are to have them! DSCF2128
DSCF2131 DSCF2141
Bean actually smiled and stayed in her carseat for an entire shopping trip! Of course, I was only in there with just her for 20 minutes, so that probably helps! I even had my camera with me! You can see the dip from the bone they took out on top of her head in this picture. DSCF2199

November 27, 2008

Happy Thanksgiving!

Yesterday as I was walking around The Madhouse, also known as Walmart, I had an overwhelming feeling of gratitude, which was unusual for me while shopping with my three kids.

I was getting some groceries, but my main point in being there was to get C's prescription filled since he has strep. We had just gotten there from the doctor's, so he still wasn't feeling well. He was in the cart, Bean needed a nap so I was holding her, and D was doing what he often does, which is picking up everything in sight and showing it to me for approval/disapproval to buy it. Although it was a crazy trip, I was walking through the aisles of people and carts, and getting a lot of looks of surprise or concern over Bean's massive incision across her head. A couple people asked me what happened to her, and the rest had utter looks of shock on their faces. It hadn't even been a week since her surgery, and I was already able to take her to the store since she's doing so great! That's when it hit me how blessed I am.

Although this last week has been crazy with the surgery and sick kids, I still realize that my life is full of blessings. So full, that I feel undeserving at times.So, in no particular order, I am thankful for: my little family, our extended families, friends, my WARM house, plenty to eat all the time, a job that is proving to be secure even with the crazy times now, vehicles to get places and visit our families, health, the fact that I don't have to be afraid living where we live, our free country, the church, my testimony, good books, chocolate, prayer, time with my family, our beautiful world, and great examples all around me helping me to become a better person.

Happy Thanksgiving!

November 24, 2008

The Surgery


The changing of her head: First pic from when she was born, second from 1 month old, and third picture is right before surgery, at 2 months old.

sep 23 oct 22 DSCF2029
The morning of surgery, she couldn't nurse past 3:30 am. So she fell asleep at 12:00am that night and I wanted to wake her at 3 to eat but slept through the alarm! So I woke up right at 3:30 am and totally wished I could feed her, but couldn't, so I layed in bed awake feeling guilty and therefore only got 2 1/2 hours of sleep. Bummer.
So needless to say, she was starving when we had to wake her up at 5:15 am to go. I was so glad though, because this girl is NOT a pacifier baby at all, and she sucked on one nearly the whole morning so she did sleep most of the time in short spurts between crying for food.
We didn't hand her off to the anesthesiologist until 8:06 a.m. Our doctor was late, so all the other people waiting for their kids' surgeries were long gone at 7:30 a.m. , so that was a bit frustrating. I was fighting back tears all morning, unsuccessfully at times. I just couldn't bear the thought of what was about to happen to her!
Finally, the surgeon got there and we walked back to the operating area. The anesthesiologist told us to give her kisses, I handed him to her, he said, "One more kiss from mom." then left with her with the final words, "We'll take good care of her." I guess they put on a gas mask first, and he said it was flavored pineapple, so the last thing they do is stick out their tongue to taste it, then they are out and they start poking them with needles and all that good stuff for IV's and such. I was prepared to bawl my eyes out after handing her to him, but I think seeing another mom do that kind of made us tougher. Actually, I know the real reason is the many prayers and fasts done in ours and Bean's behalf. We were walking down the hall, and I mentioned to Dillon that I felt really peaceful, and he said he felt the same.

Before surgery in the first waiting room (of three).
DSCF2032DSCF2030 DSCF2031 
We were told that the surgery would take 1 1/2 hours to 2 hours the morning we got there. We had been told 2 hours previously by the surgeon, but that morning he said to not be alarmed if it takes 3 hours, that it didn't mean anything was going wrong.
So we headed to the last waiting room and first grabbed a little breakfast as fast as we could in the cafeteria and then read gossip magazines for the first while to take our mind off of everything. After a while though, I really just wanted to pray for Bean and think about her--not that I wasn't the whole time anyways, but I was done distracting myself.
After 1 1/2 hours of being in surgery, the nurse called to update us saying her vitals looked good and the surgeon was still working on removing the bone from her skull.
At 11:26 am, Dr. Cambrin had just finished talking with us for a couple minutes. It seemed like a really long last hour, that's for sure. He said everything went really well, she woke up fine from the anesthesia, and was being moved to the PICU (pediatric intensive care unit). He had wanted to do more work on the back, but he said, "It was becoming too much of a surgery for her." He thought he might want to do a blood transfusion, but the anesthesiologist didn't, so they would wait and see what the PICU said. It's funny, because he didn't think she needed to go to the PICU, but the anesthesiologist did. I'm SO glad she ended up there. They wanted to keep her overnight! The main reasons they wanted to have her there was to control the swelling with the drain in her head so that so much pressure didn't build up and cause brain damage, and also because she was so little, that they needed to really monitor her pain meds so she didn't stop breathing. So, at 12:00 pm, we got to go to the PICU and see Bean for the first time after the surgery.

She was in room 8--there were a few rooms, and a lot of beds just divided by curtains. I am really glad she got her own room. Here is what we walked in to see:

Above her left ear is a tube coming out of her head--that was the drain to get the fluids out to relieve the pressure building up, and reduce swelling.

DSCF2041 DSCF2035-1
These pictures, especially this next one, just break my heart. Not that she looks so bad in them, but because of the memories that come back when looking at them. I think that we had prepared so much for the actual operation that I didn't prepare myself for her being in pain. I just kind of thought, "What a relief it will be when they come get us after the surgery. She'll be on pain medicine and sleeping, and we'll just be on the uphill from there!" Boy, was I wrong. The first day was so so hard. Poor Bean. She was in so much pain. This next picture just reminds me of looking at her like this, unable to open her eyes because she's so drugged, yet she kept crying out a cry that I have never heard before. It was so sad, and so painful.
Their job in the PICU was to make them as comfortable as they could, but to not give too much morphine or there was a risk of their breathing to stop. The morphine was just not cutting it for her! It was really really sad. I think the nurse (Jill) and the nurse practitioners were a lot more worried about her than they let on. Later we found out that their heart rate is a good indicator of the pain they are in. Normal for her is closer to 120. Her heart rate was over 200 sometimes. Even when she wasn't crying and getting worked up. Poor Bean. The nurse looked very concerned all day, and kept calling the doctors to discuss what else they could give her.
I remember once the nurse practitioner over the unit walked by and mouthed through the glass door, "Better?" and the nurse shook her head no, with a sad look on her face. Another time someone called her and said something that I didn't hear specifically, but I think it was about her vitals on the computer, like her heart rate or something like that, they said something about sky-rocketing, and the nurse said, "Um, mom's here." They ended up giving her some other drug that was also an amnesiac, so it would make her forget the last little while so they could get on top of her pain. I tried to comfort her by talking to her and patting her, but a lot of times it made her cry harder. We couldn't hold her that whole day and night. It was probably one of the hardest things I've ever had to go through. I wished so badly to be able to trade her places.DSCF2036 Thankfully, her super soft blanket from my friend, and her pacifier helped her a little bit.DSCF2043 DSCF2042

She drank some pedialyte finally at about 6:00 pm. They were worried because she didn't pee forever, then finally did at 4:00 pm (with her catheter in). DSCF2047 DSCF2045 

After she ate at 6 though, she wouldn't eat anything else. They kick you out from 7-8 while they change shifts, because there is a lot of talking about patients and everything that I suppose they don't want you to hear.
Dillon had left about 6:45 pm to go meet my mom and Karl at an Instacare because our 3 year old had a fever of 103.8 and a sore throat. So he had strep and Karl took him home while my mom came to see Bean. They got there just at 8, as I was also coming back to be with Bean at that time. That hour goes slow when you are worried about your baby! I got to talk to family and friends though, so that helped.
We got back to see Bean crying, naked, while they were trying to calm her, change her, clean the mess from the drain leaking everywhere on her, wrap her, give her morphine, and stick the drain back in because she had pulled almost all the way out of her head. OUCH! She was really sad. I think the saddest thing about her cry that day is that she couldn't open her eyes hardly, and her mouth barely opened as was just this moaning cry, high pitched at times, and just was really like the only thing she could do was get a noise out. It didn't sound like her at all.
There were all the main doctors and some other nurses in there at the time, so probably 6-7 people in there looking at her and trying to figure out what would help her pain. The newer nurse told us they had upped her morphine to the maximum amount they could give her, or else she might stop breathing, and that it seemed to do nothing for her. I felt so helpless. I couldn't hold her, comfort her with patting or anything. It was horrible.
She finally settled down though. I went to pump and when I came back, they had told my mom and Dillon that she needed a blood transfusion. That was going to help her a lot though, she was really weak and pale. I mentioned what an awful day Bean had had to the new nurse on the shift, and she said, "Oh yes. She's had a REALLY hard day."

My mom and Dillon left--Dillon went home to sleep at about 11:00ish, and I wanted to stay with her until 11:30 as long as everything was going well. They had some craziness with trying to draw blood from her "art line" is what they called it (artillery line), and it wasn't drawing because some weird white glob was coming through the tube and blocking it. They thought that was really strange and tried again, only to have the same thing happen. So they had to call the nurse practitioner, who ordered 6 different tests to see if it was this or that, and everything came back normal. They thought maybe it could have been a weird reaction to the blood transfusion. They did have to call the IV team down to draw blood since her art line wasn't working. They turned out all the lights and had this cool light to see her veins and stuff. They had to poke her twice though, which hurt her of course.
I didn't feel like leaving her until she was snuggled up and sleeping again. So after all that was said and done, it was 1:00 am. I took these couple pictures, and went to sleep in the room we luckily were able to get in the hospital in the PICU waiting room. The nurse was very pleased we got it.
DSCF2050 DSCF2049

The next morning, I got up at 6:30 am and went to see her, then they again made me leave from 7-8. We got back to a new nurse (Heidi maybe?) and yea! I guess she slept for 6 hours that night! So great! And then we got to hold our Bean!!! The nurse had just started to feed her and said I could if I wanted to. It was so so great to finally hold her again! She was doing so well, she got the transfer to go to the Infant Care Unit at 9:00 am, and by 9:30 am, we were on our way.
DSCF2056 DSCF2060 DSCF2058  
DSCF2061 DSCF2064

Our nurse in the Infant Care Unit, Mario, was great--he'd only been an RN for 2 months, but you could not tell. We started out sharing a room with a little 3 month old and her parents. She was having a hard time gaining weight, so they were feeding her like crazy and weighing her. The parents took off at about 11 am, and didn't come back until the baby was discharged at 6 pm! So sad, the baby really wanted her mommy and daddy, so Mario ended up holding her and rocking her a lot. But it was fine, Dillon and I were there to care for Bean anyways. I think the couple was just really young and the guy made it clear he did NOT want to be there! But they were nice--I was just glad we didn't have to listen to his swearing the whole day!

Friday was so much better than Thursday! She just slept and slept. It was wonderful. Dillon brought blankets back and I went out to the van and slept for 1 1/2 hours, which felt great.

It was seriously the biggest relief and blessing to have her not be in so much pain. It did wonders for our emotional state! She definitely preferred to sleep on her right side, maybe because the drain was on the left side and probably hurt her. So, she swelled up on the one side. The top didn't swell quite as much as we'd thought--he did more of the work in the back, so that's where most of the swelling occurred.
1:30 pm Friday

DSCF2072 DSCF2071
6:20 pm Friday


Friday night, Bean was a little confused I think as to her days and nights! She was up the WHOLE night! But she wasn't sad for the most part, she just was awake! I slept about 2 hours that night. I finally asked the nurse, Joseph, if he would take her for a little bit because I was afraid I was going to drop her if I fell asleep. I seriously thought I'd fall asleep standing up!


This next picture was when she started looking really good, at about 1:30 am.


The neurosurgeon came in Saturday morning and looked at her. He said he couldn't think of a reason to keep her, and that we could go home that day. If we felt more comfortable staying overnight, we could. We debated, and originally I thought I would have wanted to stay longer, but they kept coming in and waking her up to check her vitals and all that good stuff, and wasn't getting much sleep. So I figured she'd be happier going home so that's what we decided!

1:00 pm Saturday: She is looking so great!

DSCF2082 It's been truly amazing how fast she has improved! I am amazed at how quickly she has returned to smiling and even laughing occasionally. It was about 3:30 pm on Saturday when we got home. She slept and slept and woke up happy--okay, well I take that back, she ate and then was happy. Every time she wakes up she is pretty sad. I think it probably just hurts her when she wakes up. That night she slept for 9 HOURS!!! Wow, huh!

DSCF2085 That 9 hours was apparently all spent on her left side again, so she got a little swollen in that eye once more.
She was so cute when she first saw the boys on Sunday morning. She couldn't stop grinning at them.
DSCF2097 Today, it's been a bit harder on her. She was on morphine for Thursday and part of Friday, then Friday and Saturday she was on Lortab, and Sunday morning, then we were to transition to Motrin, and now to Tylenol. I don't think the Tylenol is enough for her today. She just can't sleep and is crying a lot more, so I just gave her a dose of Motrin so hopefully that will help.
D looks like he has pink eye, and I think C now has strep. Hopefully Bean can stay healthy through them being sick! They said the biggest risk now is infection of the incicsion, so hopefully we'll keep that from happening.

Primary Children's really is as great as you hear. The nurses and doctors are so wonderful and just really help you to trust them. I am so thankful to live so close to a great hospital, and grateful that so many great people have chosen that career path to be there. We were impressed with them all.

I just wanted to tell everyone how thankful I am for their support. I cannot believe the amount of calls, prayers, fasts, letters, treats, dinners, babysitters, etc. that we have been given. I am so thankful for this huge amount of support and love. We've really felt the effect of all your prayers and concern. Thank you so much! She's doing great! We love you all!

November 23, 2008

2 Months Old!

Monday Bean turned two months old. Really, when people ask me how old she is, it almost makes me sad to say 2 months because it just went so fast! Unfortunately, her doctor's appointment was actually a bit depressing. She was still in the 90% for height with her whopping 24 1/4" tall, but her weight was 8 lbs. 10 oz., now down to only the 10%. Yikes. So, her pediatrician thought maybe I might not be producing enough milk, which, kind of makes me feel really bad that she might have been hungry for the last few weeks. Seriously, at her one week appt. after being born to check out her jaundice, she was 7 lbs. 6 oz., so in over 7 weeks, she only gained just over a pound! Not so good. I felt awful and like I've failed in a way. My life is nursing! And it wasn't enough for her! Not very fun to hear. Then, I started thinking about her surgery and if it would be okay to still go ahead with it, since she was still tiny. So the pediatrician said to talk with the neurosurgeon about that.

So Wednesday was a pretty emotional day with her surgery being Thursday. We met with Dr. Cambrin and he looked at her and said he had been prepared to tell us to reschedule her surgery, but that she looked pretty healthy to him still-- just skinny, but healthy. So D and I headed over the the lab to get her blood work done. It took at least two minutes for the blood to fill up in the tubes, and Bean screamed the whole time while I was trying to comfort her. Poor girl. She hated it.

I got out to the van and just started to cry. If I could hardly handle her getting her blood work done, how was tomorrow going to be? I really had a hard time holding it all together on Wednesday. That day was so busy and stressful and so much running around and packing for the boys. It was crazy! But maybe better because it made the day go faster.

Hopefully we'll get on top of her weight gaining. I did speak with some lactation specialists in the hospital and they were helpful so I think she'll be fine. One of them even seemed to think that I was totally making plenty, and that Bean's just a skinny girl! We'll see what works--I feel much better about all that now.

Anyways! We love our Bean and can't believe 2 months have already passed! She totally laughed out loud at my mom on Wednesday night--SO CUTE! First laugh. She's laughed a couple times since as well and I love it!

October 15, 2008

Neurosurgeon Meeting

Alrighty then, I have loads of info about what will be going on with Bean, so here it is if you wanted to know!

Dr. Cambrin is the Neurosurgeon who will be performing the surgery. He said there is debate among Neurosurgeons as to what the rate of people who have damage done if they don't have surgery, and I guess some say 15%, but most say 2-3%. He said it is just a hard thing to prove that anyone has anything wrong with them due to their skull being fused and pressure building up. He did say that if more than one place was fused, that the chance of brain pressure increases. But, with that being said, he realizes that of course no one wants to chance being in that percentage of people anyways.

As time passes though, if the suture that is fused is not removed, head deformities and facial deformities just get worse and worse. Eyes become crooked, there becomes dents by their eyes, the nose can be misshaped, the jaw misshaped, the mouth, the ears, pretty much if it's not fixed, they will look really different. That would obviously alter their life by the way they were treated socially and so they recommend doing the surgery anyways even if there wasn't a risk of the brain pressure, just because it could change their whole life based on the way they look.

Her surgery options were one of three choices. Since she is so young, all three options were open to us.

1) This one was the biggest deal--100% chance of blood transfusion. They would remove the whole skull and reshape it all and then place it back around the brain. Not recommended unless they were over 4 months old and just a big deal.

2) They would make one incision from ear to ear, they make it squiggly this reason--the hair parts if they do what they used to, which was one straight incision. The squiggly incision helps to hide the scars and helps the hair not fall funny on the head if they go swimming or something like that. Kind of funny huh! There is a 15% chance of a blood transfusion in this case. This one is the one they've been doing for years. After removing the top fusion (where the ridge is) and leaving a 3 cm gap, they then cut finger like shapes into the sides of the skull and into the back so as the brain grows, it rounds out nicely. This one has immediate results and just gets better with time. A helmet is not required. The hospital stay is 3 days. Their head will swell up like a balloon he said, and their eyes will swell shut for a couple days. They will be on lortab most likely, but maybe morphine. After the 3 day stay, they are sent home and should be fine on Tylenol, although they will be more fussy for a few days.

3) This is the newest way of doing it, the least invasive. Two smaller incisions, and then they cut the finger-like things into the sides with a scope, but not as deep, so the results are not as immediate and they don't really know any long-term results. They would have to wear a helmet until they are a year old, and she would have to wear two helmets in her case since she's so young. Insurance may or may not cover the helmets. 13% chance of blood transfusion, little bit quicker recovery than option #2.

He recommended option #2 saying if his kid had it, that is what he would choose. You get better results with the second choice, and you don't have to wear the helmet. They've been doing it for years and he thinks it is the best option. I asked why they would do the third option, if it was the Neurosurgeon's choice normally, or if the parents chose it because they were scared of a more major surgery, and he said almost always it was the parents' choice because they didn't like the idea of surgery. He also said the other Neurosurgeons would most likely be more for the 2nd option as well. He also said that he strongly recommended getting surgery, that parents who chose not to always regret it 5 years down the line because of how different their child might look.

SO, her surgery is set for November 20th. Since she is so little, she will be the first patient of the day most likely with the no eating after certain times and all that stuff. They simply have to wait for her to get old enough that it isn't life-threatening. He said we'd notice even in this next month her head shape getting more and more abnormal, more pointy in the back and her forehead might start to bulge out. But we just have to wait for her to be a little older.

The greatest risk is blood loss, and at her age now, she only has 6 cups of blood, but by 2 months old, they have 14 cups, and he didn't want to wait until she was 3 months old because the earlier the better with the bones being softer the younger they are. The next biggest risk is a main blood line beneath the leather-like covering on the brain. They also sometimes cut into that leather covering and have to sew that up. But, being Neurosurgeons, they are completely comfortable with working on the brain, so if those things were to happen, she'd be in good hands--which is why they have them do it anyways!

He said it's just bad luck, no one really knows why it happens.

Everyone asks how I'm feeling about it. When it gets closer, I'll probably be more in freak-out mode, but I do feel she's in good hands, and also, in going to Primary Children's Hospital, you see all sorts of children with things that are seriously wrong with them, so it actually makes me feel grateful when I go there and my heart goes out to those families.

October 7, 2008

Little Update

We have an appointment with the Neurosurgeon and the Craniofacial specialist next Wednesday, the 15th, at 11:15--again at Primary Children's Hospital. So we won't know more until then. Some of the questions popping up from some of you and amongst ourselves are how many places of her skull have fused together--if more than one at all--how long until damage would have actually taken place, will she have to wear the helmet and if so for how long, what would have happened had we not caught it now, will she need a blood transfusion, how soon the surgery will be obviously, how long the hospital stay will be, etc. I mean seriously, I really wonder what has happened to people that they never caught this--how long does it take for enough pressure on the brain to build up and cause problems?

If there are any more questions you and I have discussed, or you are wondering, then please post a comment because I really really want to cover everything that we are wondering about at this appointment!!!

October 3, 2008

CT scan results

After many calls to the doctor's office, Bean's pediatrician finally called at 7:00 pm tonight with the CT results from Thursday at Primary Children's Hospital. She does have what they were looking for--it's called Craniosynostosis. I realize that there are a lot worse things that she could have, but it is a bit difficult still!

When Bean was born, we noticed that her head shape was rather elongated and grew out towards the back. I was especially concerned about it because her being a c-section, she would have had a perfectly shaped head, but since I went into labor, her pediatrician wasn't sure if her head had been shaped that way during the contractions and would just re-shape like they normally do, or if something else was going on. Here is a picture of her head the pediatrician told me to take so we could see if the shape was changing when I came back for her 2 week check-up.

sep 23

I think her head actually looks even worse than this can't tell as much in the first one, but the second one shows the strange shape more. She also has a ridge down the middle of her head where the bones have fused together--you can kind of see that in the 3rd picture. At her check-up at 6 days due to her being jaundiced, we looked at her head and after they measured the circumference and it was in the 90%, that's when I really thought something was wrong, because my boys' heads have always been in the 30%. So the next week, since nothing had changed with her head, the CT was scheduled.

The CT scan only took about 5-7 minutes to complete. She was all wrapped up in a blanket, they put foam around her head to hold it in place, and then they strapped her onto the table and put a strap across her forehead. She had just woken up and so was really hungry--luckily she took a pacifier and I was able to hold it in when they took the pictures. I wondered if something was up then also, because there were seven people in there looking at the pictures and talking and pointing at the screen. Then when I got home, I had a feeling again that yes, she probably had Craniosynostosis. After doing more research online, it seemed that her head shape was just so similar to those who had it as well, which seemed to confirm our thoughts even more.

You probably are wondering what the heck it is! Here is the best information that I could find: Craniosynostosis. Basically, it's when some of the bones in the skull fuse prematurely. Quoting from that website, the areas where the bones in the skull meet together are called sutures. When those fuse together, there can be no growth in that area. The inability to grow in that area leads to overgrowth in another area which causes the abnormally shaped skull. This causes problems down the line because as the brain is growing, it needs to be able to expand, and if the skull is fused, this cannot happen and can cause pressure on the brain which can lead to developmental problems or brain damage.

No one knows why it occurs. It could be genetic, but it often occurs sporadically. The article said most likely some accident happened early on in one of the child's genes.
Bean has the Scaphocephaly form, which is the middle ridge where the bones have fused together. There is only a one in 50,000 chance that they will have this form, according to that article.

So this is what will happen: I am supposed to call the Neurosurgeon and the Craniofacial specialist to meet with them next week. So I'll do that on Monday and then meet with them and they'll set up a time to do the surgery--most of what I read say between 2-3 months old is the best time to do it. So tiny! The Neurosurgeon removes parts of the skull, then the Craniofacial specialist reshapes the bones--of course I'm not sure on all of this, it's just what I've been reading online. I think the hospital stay is 1-3 days--some websites say 3-5 days. I am not sure whether or not she will have to wear the helmet thing afterwards--some websites say they don't, but a lot say they do.

So we will know more after meeting with those doctors mentioned above. I think I'm scared because they put her out and I am nervous about that with her being so little, and of course they are working on her skull bones right next to her brain. I feel very blessed to live so close to Primary Children's Hospital where they know what they are doing and I feel safe taking her there, but of course the mother in me is scared and sad if I think about it too much. I also feel blessed that she is otherwise a very healthy and happy little Bean--one of many nicknames for her around here:). And as always, please keep Bean in your prayers--we really appreciate all your prayers for us!