Thursday, July 14, 2011

Eli's surgery

This is LeBonheur Children's Hospital in Memphis. Noah had his 3 eye surgeries here and now Eli with his surgery.  It's an awesome hospital
Eli had a minor surgery in June and I'm just now getting the pictures posted.  :)  Now Eli can join the ranks among his brother and sister and say that he has had surgery and been in the hospital.   Now that all 3 of my kiddos have had surgery I'm done with hospitals and surgeons for a while.  Of course we still go for Julianna's follow-up appointments but no more surgeries for a while I hope.  

We had to be there early and I think Eli was still asleep and also a little nervous 

Daddy working while we wait

Mosaic tile art.  They just built an entire new hospital and it is beautiful with all kinds of fun kid stuff to look at and do

Eli playing with the toy that he picked out in the Bunny Room

Child Life Specialist showing Eli the mask that will put him to sleep.  He picked out strawberry scent

Daddy trying to play the game

We were there for about 3 hours waiting for his surgery

Off to the OR. I always hate this part.  Watching your kiddo being rolled off to surgery is never an easy thing

He was so loopy but he was enjoying his popsicle 

Ready to go home!

Monday, July 11, 2011

Broadway Bound

Julianna had a fun time in dance this year at the Millington School of Dance.  She loved going to class every week.  I was really worried that she would not be able to participate in her dance recital because it was so soon after her surgery.  Dr. Kelly reassured me at her post-op appointment that she in fact could participate so I was a happy Mama!.  Here are a few pictures of her big night.  The name of the recital was Broadway Bound and all of the songs were from Broadway musicals.  I loved watching all of the kids from age 3 to 18 perform.  It was an awesome night!! 

I love them!!  They are always so silly when I try to take pictures

Playing her Leapster while we wait for the show to begin

She loves her costume and loves to twirl 

Sitting with her class waiting to go on stage

Mrs. Susan her dance teacher

Kisses from proud Daddy

Mrs. Bing the owner of Millington School of Dance.  She is awesome and we love her!!

Family picture.  Can you tell how tired one little boy is?  :)  It was in Memphis and didn't have enough time to drive back home, so we were there from 1:00 to around 8:30 that night.  It was a long day.

Mamaw and Papaw came to watch

My Mom with Julianna

Tuesday, June 28, 2011

Pray for the Knost Family

This is another Cranio family that I have gotten to know over the past 3 years. Her son Isaac is having his 3rd Cranio surgery tomorrow for multiple-suture synostosis. He will be 4 next month so I know what she is going through with an older kiddo having surgery. I also love reading her blog so follow her! This is taken directly from her blog so I take no credit. Just keep this family in your prayers as they endure another surgery for their son. Not only are Cranio kids tough but so are the families that stand by them.

***I will preface this post with a warning. There will be two pictures in this post of a 3D CT scan of the Bug's head.    Some people may find this to be graphic. There is also some description of the surgery that will take place. I don't think it's terribly graphic, but if you're squeamish, you may not want to read it.***

Yesterday, we spent the day at Riley Hospital for Children, "Bugsy's hospital." He had a 3D head CT in the morning and then an appointment with both his neurosurgeon and plastic surgeon in the afternoon. Some of you have been asking how the day went, so I thought I'd give you a rundown. (This is copied nearly word-for-word from an email I typed earlier, so it may read somewhat like a letter rather than a blog post. Sorry...didn't feel like rewriting!)

The CT went fine. He was NOT happy about the IV. They wrapped him in a sheet like a burrito...I had to literally lay across his body and hold onto the bed on the other side to keep him still even in the burrito! He is really strong! Anyway, it took 2 different veins and lots of digging before they got the IV in. It was funny, though...once the ICU doc that does the anesthesia came in it went fast! Bugs was asleep before he finished injecting the mid scream he started snoring! Not exaggerating. I laughed. The scan only took about 5-10 minutes, and then he woke right up. He was groggy for half an hour or so, then we went to lunch and he perked up. :)

The appointment went pretty well. They are not going to be able to address the back of his head at this time, so he may or may not need another surgery after this one to correct the back. It will depend on how his head grows after this surgery. They are hopeful that the asymmetry in the back will become a purely cosmetic issue after this surgery, and we won't correct him for a cosmetic issue. For some reason (and it's VERY obvious in the CT) his head is growing up and back, but not forward at all. Comparing earlier scans, his face looks more "forward" now compared to what it way, meaning that his forehead is almost pulling back from the rest of his face. He has virtually no brow bone, and once again very little eye protection.

This is straight on from the front. Note the asymmetry of the sides and the height at the top of the forehead. There's also a very notable hole in the for

Straight on from the left side. You can see how far backward he's grown, here. (It's not as noticeable with skin on!) Oh...and the giant holes...

The gaps, which we thought were starting to fill in (and the surgeons did as well) are quite amazing. Ear to ear, aside from a small bit of bone just left of center, he's got about an inch wide headband where there's absolutely no bone. In the scan, you can literally see straight through his head. There is NO protection for his brain at all there. Just above his eyes, the width of his eyes (outer edge to outer edge) there's another spot that ranges from half an inch wide to an inch or side wide where there's NO bone. There are several other smaller spots as well, but for some reason, a large amount of the spots where they had to cut the bone are simply not healing. They don't understand why #1, he's reverting so much to his pre-surgical state, and #2, his bone isn't replenishing itself as it should.

For the surgery, as I said, they will not be able to address the back. With as much work as they are going to have to do on the front, there's simply no way they can safely position his head to work on the back as well. They will be starting at the front, above the eye sockets, and they will work their way back as far as they can safely go. They'll be able to use the same incision line, which they are actually surprised about with the way his head has grown. They were hoping to be able to cut out the scar and leave him with a pencil-thin line like he had after the first surgery, but that is very unlikely with what they are planning. They'll be moving his forehead forward to create a brow bone, widening him through the temples, and reducing the height. They're hoping to address some of the asymmetry on the sides as well, but not the back. They'll remove any existing hardware. He has several titanium screws and a titanium plate on either side of his head at the ears. (We didn't realize this...or didn't remember...who knows!) They will remove that existing metal and replace it as needed. There are some screws that have come lose and are tender to the touch, so they will take those out. (Yes, I did just say the Bug has some screws loose!)

As far as those gaps in the bone go, while they are still hopeful that they'll be able to fill them with "leftover" bone as they reconstruct, they are fairly certain that he will need a rib graft and/or titanium mesh to fill the gaps. IF they can take just one or two ribs and that be enough, they will do the rib graft. If it looks like they'll need more than 2 ribs, they will use the titanium mesh or a combination of ribs and mesh. They'll prep him for the rib graft whether they end up needing it or not. One concern they have for a rib graft for him is that ribs typically grow back, but since his skull bones aren't growing together as they should, they're not sure whether he'll regrow ribs, either. One or two missing ribs isn't a huge concern, though.

Likely the reason he continues to have headaches is that his nerve endings, especially in that headband region, are right at the surface. They would normally be covered by bone, but his obviously aren't. Once they cover the gaps, he should feel a lot better!

We're expecting about 12 hours in the OR again...2-3 hours to prep, 8-9 hours of actual surgery...12 total hours from hand-off to recovery. It's going to be harder for her to open him because she has to be so much careful with the "exposed" brain, but then removing the bone should be a bit easier because she doesn't have to make holes, they're already there. They're anticipating we'll leave the hospital either late Sunday or sometime Monday.

That's pretty much the gist of it. The neurosurgeon said we're "pros" at this, however unfortunately. She also said she's praying this will be his last surgery. :) Have I ever mentioned how much we love our surgeons??

For the next month, I will try to carry on as normally as possible in the blog world...but please be forewarned that the day of surgery I will be using this as a place to update all of you as we are updated, and will likely post several times. After that, at least for the next week, I may be updating daily or perhaps not at all. It'll depend on the progress and how we're all feeling. In the meantime, just know that we're ready for this. Some of us are more nervous than others, but we all know that God is in control.

And the Bug? The Bug is the most ready. He is ready for a "normal shaped head." He wants a "small head like Little Lou." It's almost game time. We're ready.

Thursday, May 26, 2011

Pray for this family

Please keep this family in your prayers as they prepare for another Cranio surgery. This will be his 6th surgery. They are such a sweet family and I've gotten to know her through the CranioKids family and now Facebook. He will almost be 4 years old the day of surgery and this is all so different with older kiddos than babies.

My This N That Life: The Bug's Big Day

Tuesday, May 17, 2011

Pray for Saide

Please pray for this sweet little girl named Sadie.  She is 4 years old and had surgery for Craniosynostosis last Thursday at Vanderbilt Children's Hospital in Nashville.  She has had a difficult time in recovery with throwing up and a lot of blood loss.  You can read her entire story on her CaringBride page.  Her Mama can explain it better than me.  It amazes me how God works and how he used little Lucy to bring this Mom to me.  Julianna and Sadie both have Craniosynostosis and we have become soul sisters because of our daughters.  We have not met yet but living in the same state and taking our daughters to the same surgeon we are bound to meet one day.  Never stop praying!!

Monday, May 9, 2011

Field Day

My Kodak camera broke so I have been using my phone to take more pictures.  I downloaded the Blogger app to my phone so I thought I would try it out. Here are a few pictures of Noah and Eli's Field Day last week at school.  I LOVE their school!!!!   Oh and I got a Nikon camera for Mother's Day and I'm so excited about learning how to use it.

Friday, April 29, 2011

Never a dull moment

I tell ya there is never a dull moment around the Harber house.  We have had a lot of rain here in TN along with strong winds and tornadoes.  The sun finally came out the other day and we had several bird's nest in the yard.  We were all outside and heard this chirping noise and then this mama bird flew down and started going crazy.  There was a baby bird trapped in our garage and the mama bird was not happy with us being near it.  Of course my animal loving son Noah had to rescue the poor bird out of the garage.   After he rescued it the mama bird came back and the little bird followed it's mama out of the yard.  The bird was either injured or too young to fly because it just hopped away and couldn't fly.  :(  

Noah trying to get to the baby bird

Baby bird

Daddy is helping out now

Letting it go, it was a little freaked out

Julianna wanted the baby bird to come sit in her hand

Noah caught it

He wanted to keep it but the mama bird was not happy

He was in love and that bird probably would have stayed there longer if mama bird hadn't come back

Mama bird keeping watch