Brianna's Appointments (March 11th post)

So we've proceeded on the next step of the seemingly never-ending quest to answer the question, "What's wrong with Brianna?". Her helmet therapy following her surgery is proceeding very well. It took multiple fittings to finally get the helmet right - it kept needing more and more padding on the front and back. The helmet needs to keep pressure on her forehead and the back of her head to keep it from growing in that direction, and leaving room on the sides for it to expand, so it will round out to the proper shape. Well, she finally got the fit right less than two weeks ago, and already she's filled out the sides of the helmet. Which is good, but she'll be getting another helmet fitted tomorrow. And right after I got it decorated!

Garin checkin out Brie's helmet decore:

Hearts and flowers!

Well, we had the appointment with the developmental pediatritian today, Dr. Scurry. We got referred to them about 6 weeks ago - the same time that she was referred to the neurosurgeon - because we were concerned about her poor muscle tone and her slow weight gain. So Dr. Scurry met with Brianna and I today and evaluated her. Basically, she's classified as "failure to thrive" because her weight gain is so slow. She's well below the third percentile, even for her adjusted age, wich is a little over five months. She weighs 11lbs 6oz. Six weeks ago she was 10lbs 10oz. On top of that, he's quite concerned about her weak muscle tone, or hypotonia. Basically, she's still very floppy. She doesn't have total control of her head/neck movement. She does fine for a few minutes, but she has no stamina and her strength just gives out. She can't roll over either. When put on her tummy, she might try to push up a little, but she can't get her chest lifted, and after a moment she'll just plop her head down.He said he was going to consult with the pediatric neurosugeon. The concern is that she may have cerebral palsy or some other neuromuscular disorder.

It's all a lot to absorb. And with an impending move and not knowing where we're living next just adds to the stress. It's just hard to imagine anything serious being wrong with my perfect little girl. I know whatever the problem turns out to be, she's a special and amazing girl, and God has some special plan for her, so I know it will work out for the best. Please keep our family in your prayers.

Brianna's Surgery (Written Feb 5th)

We left the house on Tuesday at about 525. The drive was a bit nerve-wracking because we hit traffic - we were supposed to check in at six, and the drive normally takes about 20 minutes. Fortunately, we arrived right before 600, and there was plenty of parking right near the entrance. Brianna had last nursed at 145 am. She wasn't supposed to nurse after 2am, and could have water or juice intil 4am, but she doesn't take any artificial nipples because of a strong gag reflex. Not that it mattered, she slept until right before we left. She cried a little as we started driving, but settled quickly. When we got there I put her in the sling and we began the check-in procedure. She did fine for the most part. She would go on crying jags when her hunger/thirst would get to her, but it wasn't nearly as bad as I expected.

At about 645 Brianna and I were escorted back to the operating prep area, mom had to wait in the family waiting room. Brianna had become almost hysterical at this point, but after a few minutes of swaying with her and singing lullabies, she finally passed out (I thank the Lord for giving some woman the wonderful idea of making and selling these slings, I couldn't imagine doing that without it.

The parade of the members of the operating team began. First was Tory, the anethesiologist - he was getting married in May, very funny and friendly guy. He explained the process of what was going to happen with the general anethesia, and the risks. He would put her under and then put in two IV lines, and she may have some bruising from that. The risks were very tiny of any complications - in the rare cases of complications it's usually when someone has other risk factors like heart problems. Then the nurses came by to go over some paperwork. They said that they would call me in the waiting room with an update, probably around 9am. Then Dr. Helling, the craniofacial plastic surgeon came to talk to me. He talked about what the procedure would entail. He commisserated about having two daughters who had medical problems, and the irony that one of them would have craniofacial problems, and how he operated on her. He said that when babies wake up out of general anethesia they are often cranky, and can be inconsolable because they don't know what's going on.

Finally, Tory came in to carry Brianna away to surgery. He took her in his arms, she woke up and looked at me, with all the faith and trust that a baby has, and I kissed her and he carried her away.I joined mom in the waiting room to wait. And wait.

At 9:08 the phone rang and I answered. It's one of the nurses, and she says that they've just started on the surgery and she will call back around noon. Again, we wait. At noon, Dr. Helling comes out and tells us she's out of surgery and they're finishing up the casting for the helmet. He takes us up to a conference room up in the pediatric intensive care unit to let us know how things went. He said that they ran into a small complication because the suture wasn't entirely fused - a small section in teh middle was still open. Instead of solid bone that section was fibrous, more time consuming to cut through, so it added quite a bit of tiem to the surgery. Then he told us that when tehy began cutting through the bone, of the bone drills malfunctiond. It was supposed to automatically stop cutting when they were through the bone. They noticed it didn't seem to be functioning quite right, so they stopped, saw it was sitll cutting through the bone, and continued. When they got through the bone, it gave, but didn't stop cutting, so they shut it off quickly and checked again. Apparently it lacerated/scuffed the dura (the outer protective layer that covers the brain -- there are two layers). At this point my heart dropped - I knew that she couldn't be too bad off if they had obviously finished the surgery and cast her head for the helmet. But still, at this point your brain seems to at once stop thinking and race through the worse possible scenerios. But he quickly went on to explain that the neurosurgeon monitored the situation, and concluded that there was no brain fluid leakage and it was safe to continue.

At this point we went to her bed in the PICU. My little girl was lying on her bed, hooked up to Ivs and monitors. There was a nurse holding an oxygen mask over her face and she was crying weakly. My eyes filled with tears and I hurried to my baby and laid my hand on her chest. She calmed down and quickly fell asleep. They removed her mask and checked to see if her pulse-ox was good (it was) finished their checks and left us with Brianna.

I tooke the opportunity to really look at her. It was amazing. She had two relatively small incisions (probably about 1.5 inches) and there was just a steri-strip over each incision. Already she looked different. Before the surgery she looked like someone had taken their hands and put them to the sides of her head and smooshed. It looked uncomfortable. But now, her head looked rounder already and it just liked like something had releaved that pressure – which of course something had! A good bit of the roundness was swelling, but you could already see that the shape of her head had changed.

The pediatrician came in and went over some elements to her care. Her swelling would probably increase over the course of the day and night and then get better, but they would look out to make sure the top of her head wasn’t swelling too much and look taut. Her head would need to be elevated at least 30 degrees until the swelling was gone – at least a week. When I asked when I could nurse her, he said as soon as she was ready – when she next woke up if she was strong enough.We took some pictures and made some calls. I just held my baby’s hand and praised God. He brought together this team who took care of her. His providence ensured we were in the rght place for her condition to be identified and for her to be cared for by excellent doctors. When things seemed to go wrong he guided the surgeon’s hands. As the neurosurgeon said, it was divine intervention that allowed everything to happen so quickly and for the right people to be in place to care for her.

Here are some pictures.

Right after she came out of surgery

Nursing Brianna, about 2 hours after surgery:

A bit woozy still:

About 4-5 hours after surgery, the swelling has begun:

The swelling at it's worst, but she still has a smile!

36 hours after surgery, out of the PICU and into the Pediatric ward, almost back to her usual self:

Heading home, 48 hours after surgery!

It's been so long...so very long

It's been a LONG time since I've posted on my blog! Mostly because life has just been so hectic, and I have Facebook as a crutch - I can easily put up my pictures there, so I tend to be lazy about blogging. Bad Phaedra! Well, I'm going to post up my facebook updates so I have it on my blog. So followers (Carolynn!) beware! There's going to be quite a few posts in a row and then I promise... I PROMISE, I'm going to keep up with this blog!! Especially since I heard about another website where you can turn your blog into a hardback book! Talk about incentive!

Brianna's Baptism

In our whirlwind of preparations before Brianna's surgery, we came to the realization that Brianna should be baptised and annointed before going into surgery on Tuesday. Originally, Brant and I planned on having her baptised at the parish he grew up in when he returned from Afghanistan. But knowing that she was going to have pretty serious surgery we decided to have her baptised first. So I called the on-base chapel and talked to the priest, explaining our situation. He said to bring her over Sunday morning at 930 and we'd do the paperwork and have her baptised and annointed.

Friday night I had to run out to Sears to buy a Christening gown for Brianna. B's father's family has a gown that B's grandma T made for his uncle 67 years ago, and it's been worn by every Tretter since, including Garin. It's currently being held by B's mom in California, which meant there was no way it could be here before Brianna's baptism, so I had to go buy her a special one, which made me very sad that she wouldn't be in the family christening gown.

Mom arrived last night - after I told her on Thursday that Brianna was having surgery on Tuesday, she bought a ticket to be here Saturday and stay through Friday.

So we walked over to the chapel - the whole entourage - Mom, me and my two, and Heather with her four. We got over there and changed Brianna into her gown, and set up for the baptism in the Blessed Sacriment room. The Mitchell kids were a little clueless, since they've never been exposed to the Catholic traditions. But all that considered, they did remarkably well. Austin videotaped the sacrament so Brant could watch it later. And Heather took some amazing pictures, some of which I'll post here, most of which will be on facebook.

The Sacrament was beautiful. I really thought about what it means. How I'm promising to raise Brianna as a Christian woman, to teach her the Traditions of the Church. To give her the foundations of a strong faith. I pray that she will be a woman who serves God. I pray that B and I will be a strong example of faith, of marriage, and of serving the Lord, even when things are difficult and challenging.

I really thought about it, and my eyes filled with tears as the Priest told Brianna that the burden of original sin was being washed away with the baptismal waters, and that she was a child of God. I prayed that everything would go well with the surgery and that the Lord would grant her the opportunity to serve him. I thought of all the challenges that she had already faced in her young life, and that the Lord must have special service in mind for her.

After the sacriment, I told Garin that he was responsible for being a good brother to his sister, that he was to be an example, and that he needed to protect her and take care of her. I knew he couldn't fully understand, but I knew that we would reinforce these statements as he grew. I see how already he looks at his sister with genuine love and affection in his eyes, even at his tender age, and it amazes me that he has the capacity already to care so deeply. And he treats her with such care and affection that it truly humbles me.

I have been gifted with two amazing children, and I am so blessed that the Lord has entrusted their care to me. Today the sacriment reminded me of my duty as a mother.

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.