Sagittal Synostosis

It's been a rough week as we've waited to find out for sure what Brianna's diagnosis is. I've been overwhelmed with self-doubt. Does she really have craniosynostosis? Am I overreacting and she just has a funny shaped head? What is the right thing to do if she DOES have surgery - if we wait until we get moved she'll be AT LEAST eight months old before we'd be at the next base settled enough for surgery.

On top of that, trying to communicate with Brant about everything is EXCRUTIATING with him a half a world away. He has a hard time sorting out exactly what's going on, and I'm not doing a great job communicating it. On top of that, we're in the middle of the assignment cycle and their matching up assignments, we have NO idea where he's going to be stationed, and if something needs to be done to get the right assignment for her care. And I knew if she did have the condition, I'd have to be scrambling to get her enrolled in the exceptional family member program before assignments are finished.

It's all so much, and all of it is running around in my head as I get ready for her appointment today.So we arrive, and she has an appointment with the neurosurgeon at 1030 and the plastic surgeon at 1200.The neurosurgeon walks in, and I'm immediately put at ease. He's an older black gentleman, thin and self-assured. His eyes are friendly and he smiles and immediately starts talking to Brianna, who's looking around for someone to charm. He immediately is on my good list - because I can tell he likes children and is at ease around them, and Brianna likes him as well.He feels her head, checking for the bony ridge that signifies that the suture has closed prematurely. Sure enough (it wasn't my imagination!) he feels the ridge and says, yes indeed, she has sagittal synostosis. He starts talking about the method he always done, the traditional method. Then he says that the new plastic craniofacial surgeon, Dr. Hellings, is winning him over to the new, less intrusive method, endoscopic surgery. He says that he's going to let Dr. Hellings talk to us about the options and we'll decide where to go.

Heather's with me so there's another adult, one less emotionally invovled, to listen and help me make the right decisions, since Brant can't be there. We go down to get lunch before our noon appointment.At noon, we meet with Dr. Hellings. Again, I'm automatically drawn to him. He picks Brianna up and talks to her, and she charms him with a big toothless grin. He is very friendly and sits down and talks to us about our different options. About how soon it should be done, and the different surgical options. The endoscopic option has a narrow window - they need it to be done young, so the skull bones have plenty of time to remold. The traditional option involves actually reshaping the bones, so it isn't as time dependent. Brianna is getting towards the latest end of the range they like to do the endoscopic procedure.

He then tells us about his credentials. He recently finished up a fellowship at University of Texas's San Antonio neurosurgery clinic. He was the first fellow of the team that pioneered the endoscopic procedure. This is a team that people flew around the world to see. He worked on a Saudi Prince and others from all over. So I'm pretty impressed with his credentials. And having a much less invasive procedure done on my little girl is very appealing.

The catcher - the best available date is TUESDAY. Wow. So soon. No way Brant can be here, even if he flew out as soon as he woke up.Also, what makes this surgery work is the helmet therapy she'll have to undergo. The helmet helps the cranium grow back into the correct shape. And she'll have to wear one until she's about 13-15 months old. PLUS, he's just been able to convince TRICARE to cover the helmet here at Tripler because they're done in-house. If we move elsewhere, they may not cover to go somewhere else when she needs a new helmet fitted (she'll have to be seen on a regular basis, and they usually need about 3 different helmets). And the helmets cost about $1000-$2500 EACH. And it would be someone other than him sizing and molding the helmet. So if we go somewhere else we'd HOPEFULLY have the military fly her (and me) back to Hawaii to have the helmet done, and if they wouldn't, we'd have to arrange to fly back to have it done on our own dollar. So the best route is probably to have him emphasize in her care plan that she should stay here until the therapy is done - so Brant will probably need to get assigned to Hickam - three more years in Hawaii. Not at all what we wanted, but honestly, if he's here and we're together as a family, I'm thinking that I'll probably like Hawaii a whole lot more. Plus, I think the bugs are a lot less of a problem on that part of the island. =)

So there's a lot still up in the air, but she IS having the surgery on Tuesday. Now if Brant will only call so I can let him know...

Oh, if you were wondering what the differences in the surgeries were, here's a summary:

The "traditional" operation is carried out by making a scalp incision from ear-to-ear, mobilizing the scalp to expose the skull, total or sub-total skull removal, which is followed by reshaping and replacement of the skull with a variety of materials. Surgery usually takes several hours (3-7), and universally requires blood transfusions with hospitalization of three-five days. Extensive postoperative swelling is often seen and can be associated with some pain and discomfort.

With the endoscopit cranioectomy, using the aid of endoscopes, the surgical correction is done through one or two small scalp incisions (approximately 1"). The affected suture is removed (open) and the brain is allowed to grow normally and aided with the postoperative helmet therapy. Because the incisions are smaller, the need for blood transfusions has been significantly decreased (sagittal 10%, coronal 0%, metapic 10%, lambdoid 0%). Length of surgery is at or under one hour, and almost all patients have been discharged from the hospital on the morning following the surgery. The cost of hospitalization is also decreased significantly. However, best results are obtained when the babies are less than six months and preferably three months of age.So you can see what makes the endoscopic procedure more appealing.

I've attatched two pictures that show her head - the sagittal suture has closed. This keeps the head growing width-wise and instead it's really long.

A Morning at the North Shore

I live in Hawaii, yet I rarely take the time to enjoy what this beautiful island has to offer. Instead I've been focusing on what makes me want to leave as soon as I can. The worst of these is the insects. I thought it was bad in Georgia - well, Georgia has nothing on Hawaii! But that's for another post when I'm not trying to focus on the good things. :)

Last Sunday I decided it was time to take the little ones to the north shore to check out the wave action. For those of you who don't know (and why should you, I didn't until I moved here), the North Shore is THE place to surf in the winter - they have all sorts of competitions and such, because the surf is the best in the winter. Like 10-30 foot waves. I think they were coming in around 15 feet on my visit. On top of that you can often see humpback whales out in the ocean and sea turtles chillin' on the beach.

My trip was short, I just wanted to spend some time listening to the waves crash. Garin was incredibly freaked out by the waves. Funny, because 6 months earlier he thought he was invincible and kept running out into the water. Granted, the waves were only about 2-3 feet, but when you're less than 3 feet tall, they SHOULD be scary. But turn the clock and all of a sudden the loud crashing sound isn't so fun anymore. But it's definitely a different look and sound. It's raw and passionate. There's no splashing in these waves. They crash with thunder and you can feel the spray a hundred feet away. Down the shore I can see the waves crash up against the wall, spraying 40-50 feet into the air. In the other direction I see a score of heads bobbing in the swells, waiting for a perfect pipeline to come along. These surfers have their own community, and their own etiquette -somehow they all seem to know whose turn it is. It's almost poetic watching them catch a wave and ride it, endlessly, towards the beach. It must take an amazing athletic ability to keep balance. They're riding the waves into Waimea Bay - apparently this isn't for the beginning surfer - you have to earn your stripes before you're ready for Waimea Bay in the winter.

Meanwhile, I'm snapping pictures of Garin as he's trying to figure out what's going on. Brianna is passed out in my sling, strapped to me, oblivious to the raw harmony of God's creation forming around us, instead she's listening to her mother's heartbeat, perhaps comforted by the memory of her time in my womb. She always seems most comfortable curled into a bundle next to my chest.

As we walk towards the water, Garin starts to whimper and grabs my leg, trying to crawl up into my arms. Instead I wrap my arms around him, and comfort him with whispers in his ear. I tell him it's just water. He points to the waves, and says in a tearful voice, "Wa-yee?" I nod and wrap my arm around me, and we stare in wonder at the waves. I take this moment to think of how God takes care of us. In our trials and fears, He comes close to us and whispers words of comfort in our ears. He tells us not to fear, because we are in His arms, and he won't let the waves take us away.

I think of Peter, walking on the water, at first oblivious to the storm raging around him, eyes fixed on Christ. But his faith fails him when he loses his focus on Christ and starts to fix his eyes on the waves - on the fears of the world. It's this image that reminds me in my current trials of what I need to focus on. Not to be like Peter, looking to the waves and allowing my fear of them to take me under. Instead, I need to be like Garin, allowing my Protector to take me in His arms and to remind me that He will keep his children safe.

God bless you all, and thank you for your prayers.

Brianna's Battle

So at Brianna's 4 month appointment we discussed a number of problems (she's actually almost 5 months).

The first isn't a huge deal - her size percentages have dropped from 10% down to less than 5% but she's still growing, just slowly. I know she gets plenty to eat, she's just a slow grower. At almost 5 months she's only 10lb 10oz and 23.5 inches (she was 9lb 8oz and 22.5 inches 2 months ago).

The second is also not a huge deal, she's got a slight lazy eye, but it corrects itself pretty quickly and we think it might be okay by her next appointment in a month. You can see the eye in the pictures at the bottom.

The third is that she possibly has some developmental delays. Mostly in her physical abilities. The doctor wasn't sure if it was an actual delay, or if she overall just has problems with her muscle tone. Her social development is great though, so that's a big plus. She's just still not able to hold herself very well. But she's been referred to developmental pediatrics to be evaluated.

The fourth is the biggest concern. She's been referred to a neurosurgeon because she possibly has craniosynostoses. It means her skull has fused prematurely. Since birth she's had a very odd head shape. Straight on you can't really tell, except her face is very long, rather than round like most babies. But if you look at the top of her head you can tell something's wrong. Basically it looks like someone took the sides of her head and pushed, so the sides are flat, and the back is bulged out. It could possibly be positional, but since it's always been shaped like that, probably not. And from what I read, if it is craniosynostoses, she will probably have to have some pretty extensive cranial surgery - hence the neurosurgeons.

Here are some close ups - you can see the issue in them. She's a beautiful little girl, but she definately has something going on with her head shape.

The hardest part of this is not having my husband here to go through this with me. And I know once he find out what is going on he's going to be hurting. And if he doesn't make it here if she needs surgery it's going to break his heart.

I just need to trust God and know that he holds our little girl in his hands and he's going to take care of her.