my favorite martian

Ember finally got her helmet!!! I was getting really tired of waiting. First it took longer to get the appointment than I expected, then after the fitting it took 2 weeks for it to come from the manufacturer. I'm glad I didn't get it right away though, I think it would have been torture on her stitches. She's all healed now, & most of her stitches have fallen out. The helmet is taking some getting used to for both of us. She doesn't mind it too much, but I can tell that she's not completely comfortable. It's weird for me because I'm so used to playing with her hair & kissing her head. At first I was trying to plant kisses on her face instead, but it's kind of an ordeal to get her to look up at me every time I want to kiss her (which is a lot). So I've decided to forget that & just start snuggling helmet. I rub the helmet as if I'm rubbing her hair, I snuggle my cheek into it and yes, I'm even a helmet kisser. I figure she gets the idea. It may look strange to other people, but it's working for us.

Here she is, I think she looks like Marvin Martian - but much prettier :)

Surgery Slideshow

on the other side

Well I guess it's about time I let everyone know how things went, & how they're going. I'll start from the beginning. We got to the hospital at 5:30am on the morning of surgery. They did labs & stuff to get her prepped & at about 7:20 they took her from us. We handed her over to a nurse & watched as she walked away with my baby. We sat in the waiting room & tried to read books, carry on small conversation with our pastor who was waiting with us, anything to keep our minds busy. We drank a lot of coffee. It seemed like forever. They gave us updates now & then, so that was helpful. At about 11:00 I went over to the PICU to "pack Ember's lunch." I got to use the room that they were going to put her in, I got to meet her nurses, and best of all I got to use up some time. Shortly after I got back to the waiting room they let us know that they were done & everything went as expected. We couldn't see her for about an hour so we went out to grab a quick lunch. When we got back we only had to wait about 5 minutes before they called us in to see her (she was in PICU then). I was pretty well prepared & was just relieved to see her all in one peice & breathing. Ryan got a little woozy though. It was a lot to see her with all the IVs, tubes, & wires. They let me give her some pedialyte & to my great surprise she took the bottle without a bit of protest. I had been trying for a month to get her to take a bottle & she wasn't having it. That was one of my concerns - I didn't want things to be any worse on her than they needed to be. But she looked pretty good, no swelling yet at that point. Her eyes were glassy & she slept a lot in the ICU, but really not much crying (she never has been much of a cryer). Ryan and I get a parent room on the pediatric floor & that's where we slept the first night while she was in ICU. The parent room was really just a hospital room - the one she was going to be in when she got out of ICU, but it was really nice. They had a lot of cool amenities since it was pediatrics. Lots of snacks & coffee available, the nurses were AWESOME (except for one, which I'll get to later), the hospital was just great to us in general. I can't even begin to explain how incredible everyone was. So anyway, we went down to see her in the morning on Friday, she was starting to swell a little but it was the first time we looked into her eyes & saw our Ember looking back at us. They said it was ok for us to hold her & offered to help put her in my arms so I could feed her. I was really reluctant & nervous but she did well. She ate & fell right back to sleep. She got cleared to go to her pediatric room. A Child Life Specialist (coolest job in the universe) came in & brought her a cool crib toy. The rest of that day is just a blur of Ember sleeping & eating, nurses & visitors coming & going. That night our friend Paula was peeking at Ember one last time on her way out the door when she noticed something dripping from the site where Ember's drainage tube entered her head & we saw that her bed sheets were soaked. It felt like all the blood just fell out of my body. We called in the nurse to look at it. She was going to call the doctor but first decided to call in another nurse who was supposed to be more familiar with this type of surgery. The nurse she brought in gave a very flippant "Well, as long as it's coming out!!" and left the room. I wasn't satisfied with that & neither was Ryan or Paula (whose adult son had the same surgery when he was a baby). I found my nurse & told her I wanted her to go ahead & call the doctor - she said she was thinking the same thing. I think that night was the worst night of my life so far. There was so much commotion, so many grave faces trying to figure out what was going on. The doctor's PA got called in, he was concerned that it might be cerebrospinal fluid. He wanted to take out the drainage tube to stop the leak but he called the doctor first to clear it. They decided to wait because it was the middle of the night & the operating room wasn't staffed. If there was an emergency they couldn't get her adequate care. So they spent the rest of the night monitoring her really closely. She was miserable - obviously in pain. They kept messing with her & she couldn't sleep. At about 5:30am (Saturday) they came in to check her blood levels & for whatever reason they couldn't get a good sample. For 2 hours they were sticking & squeezing her heel. It was horrible. The PA finally came back later that morning to take out the drain. He said since it was only one or two stitches it would hurt worse to give her the numbing shot than to just go ahead & stitch it. So I watched them hold her down & give her stitches without being numbed. It made me sick to see her screaming in pain. By the time that was all over it was after noon. She fell asleep & slept for 5 hours straight. She got up to eat & went back to sleep until the following morning. That was Sunday morning. The PA came back to check on her & said he had been worrying about her all night, waiting to get a call but was glad the call never came. He said she looked great (she did, the swelling had gone down drastically) and that we could go home. Ryan tried to talk him out of it, he was really freaked out about taking her home. He wanted her to stay another night but the PA convinced him that she was ok. So yep, that's that. We went home.

She's doing really well now. Her forehead is still sore & she still gets fussy when her tylenol wears off. But she's not acting like she's in any pain most of the time, her incision seems to be healing well, she's acting like herself & she seems a lot less breakable to us. Her follow up appointment is tomorrow. It will be the first time I take her out of the house since we brought her home a week ago. I'm a little nervous but I'm sure everything will be fine.

I want to thank everyone who was praying for Ember. Aside from the one horrible day everything went really well. It's been great having all the support & hearing about people we've never met who are praying for our little girl. We had lots of visitors in the hospital, people bringing us meals, & TONS of people wanting to know how she's doing. So thanks everyone.

tomorrow is the big day

Well, it's finally here. The butterflies that have taken up residence in my stomach will soon be released. Here are a few final details, I apologize if they come out scattered.

* The surgery is taking place at St. John's Hospital at 7:30 am tomorrow. Surgery will take about 4 hours, the first 2 being anesthesia.

* We are welcoming visitors, but be prepared - she will look pretty rough. If you'd like to come visit please call Ryan's cell first. If you don't have that number and can't find someone who has it, you can call the hospital's patient info number and they should be able to connect you to the room. 417-820-2087 Visiting hours are from 9am - 9pm. She'll be in ICU the first day so it's possible that visitors may have to wait until she is moved to the regular pediatric floor. Just call & we'll let you know.

* We are asking that no children come to visit. Ember's appearance will be shocking and possibly scary to the kiddos. She'll also have a lot of tubes & wires, etc and having little ones around will make me pretty nervous (I'm sure I'll be a wreck already).

* There is internet access at the hospital. I am borrowing a laptop so I can try to update, but I'm not very laptop/wifi savvy, so we'll see.

How you can help:
A lot of people have offered to help. Here are some things you can do if you'd like.

* Pray (obviously). Pray for the surgery to go well, for her recovery to be as painless as possible, for minimal swelling, for no complications, no reactions to medicine, no feeding problems, no nausea, for her to sleep well. Pray for Ryan and me that we handle things well, know how to take care of her, don't take our frustrations out on each other, and of course anything else you can think of.

* If you know us well you can come to the hospital & stay with Ember for a little while so we can step out & get coffee or just clear our heads for a while.

* You can just come sit with us, play cards, read to Ember, whatever.

* You can bring us DVDs, snacks, books, stuff like that.


Ok, that's all I can think of. Thanks for all your support!

GREAT NEWS!!!!!

We got a call from the surgery coordinator. The hospital has agreed to write off any expenses that our insurance doesn't cover! Both surgeons have already offered to do the same which means we should come out of this NO MEDICAL BILLS!!!!

it's a match!

Ember and I have the same blood type, yay!! I have an appointment on Tuesday to donate my blood for her. They will do whatever prep they have to do to it, and then ship it to the hospital so it can be used during Ember's surgery. I'm glad she won't be getting a stranger's blood. I mean I'd gladly take it if that were the only option, but I feel much better about doing it this way.

On the insurance front, a friend of mine reminded me about the out-of-pocket maximum for the calendar year. I checked in our insurance handbook and did the math. Since the birth was this calendar year too that takes the max down by about half. So whether they pay 70% or 80% it really doesn't matter, I think we'll hit that max either way. That's a lot of stress relieved.

frustration

We had our last appt with the neurosurgeon yesterday. It went well, he just answered questions & set things up with the blood bank. Unfortunately the surgery coordinator informed us that our insurance is refusing to bill us as in-network. I called to double check that there aren't any in-network options for surgeons because it would cost less to travel for the surgery than to pay out of network charges. It turns out there is not a single pediatric neurosurgeon in the network - anywhere. There is also no pediatric plastic surgeon, no pediatric craniofacial team of any kind. But they still will not pay. I don't get it. It's not like we have any other options. We're not just choosing to go out of network, there literally are no other options. We got the bill for the office visit with the plastic surgeon, I sat there staring at the bill thinking "it was only 30 minutes!" I can't even imagine how much the surgery is going to cost. We're going to appeal, of course, but the lady I talked to on the phone said that they have been appealed before by other people & have never budged on it. She did encourage me to go ahead & try though. So insurance companies are horrible & rotten. BUT we have been shown a tremendous amount of kindness by our doctors. Both the PS and the NS have offered to waive any surgery charges beyond what the insurance is willing to pay. I am so thankful for that. It still leaves us with hospital and anesthesia bills though, and those are the big ones. I'm so frustrated. We worked so hard to pay off all our debt too. Oh well, it was nice while it lasted. Such is life.

we have a date

Ember's surgery is scheduled for Thursday, November 6th. We have to be at the hospital at 5:30 am, and surgery will start at 7:30. It's a 4 hour surgery, but the plastic surgeon said that 2 hours of that is anesthesia. She'll spend the first night in the pediatric ICU, and then if all goes well she'll be sent to the regular pediatric floor the next day. They expect her to spend 3 nights total, which means she should be able to go home sometime that Sunday - of course it depends on her progress. We have another visit with the neurosurgeon next Tuesday, figure out when to go to the blood bank, and that's it! Then we just wait for the 6th to roll around. I still haven't gotten her infant pictures taken and I really want to do that before the surgery so that is high on the to-do list. I want to make sure her pics are taken in her "original form." I have no doubts about the surgery at all, I KNOW this is what I want to do for her and I am positive that this is the decision she would make for herself. Oddly enough though, I feel a little strange and really kind of sad about changing the way she looks. I've looked at that face every day (and several times each night) for 3 months and I think it's absolutely perfect. She's gorgeous exactly how she is.

Our meeting with the Neurosurgeon

We met with our neurosurgeon (NS) this afternoon. Um, not sure where I should start. We don't have a surgery date yet, but he did say that it will be in about a month, give or take a week. We will be meeting with the plastic surgeon (PS) probably on Friday - our appt with the NS went late & the PS's office was closed by the time we were done. They'll call us with our appointment time tomorrow. After meeting with the PS we will go back to the NS to schedule the surgery & start getting things in order. Ryan, Ember & I will all go get our blood tested and if one of us is a match to her we will give our blood so she won't have to get a stranger's blood during the surgery. They'll help us get stuff figured out with our insurance. Our insurance considers this surgical team to be out-of-network, but because there are only 130 doctors in the country that can do this kind of surgery they will be able to work it out so that our insurance will cover it. Anyway, about the surgery itself - it's going to be a lot worse than I thought. I was under the impression that they would only be cutting the skull bones apart at the suture - sort of creating a new suture. I was wrong. The NS be making an incision from above one ear, up to the top of her head, and back down to the other ear. Then he will cut the bone along that same line and remove the front part of her skull completely (her whole forehead). The PS will take that part of her skull & work on it to make it the right shape, then the NS will screw it back on. That's really difficult information to deal with, I really didn't think it was going to be such a major surgery. Anyway, that's all the new information I can think of right now.

results

the scan confirmed the diagnosis. her right coronal suture is fused. we have an appointment with the surgeon next tuesday. i never had any doubt that the scan would be positive, but for some reason i'm still having trouble processing it.

she had her scan

The scan went well. She slept through it just like we hoped she would. And now we wait.

scan

We have an appointment for the CT scan on Friday morning. I'm supposed to bring her hungry & tired so I can feed her just before the scan & she'll fall asleep & be still. They also want me to fill out paperwork & get her registered & everything while she's hungry & tired. I hope they know what they're getting themselves into. She will be a very screamy baby until she gets food & sleep. The doctor said it usually takes a day or 2 to get the results, but she'll call me as soon as she has them, even if it's on the weekend. That makes me feel a lot better.
I'll update when we know.

First Post

When Ember was born we noticed a flat spot on the right side of her forehead. The pediatrician told us it was from her position in the womb, and that it would round out in a few weeks. When her 2 week checkup came around I asked the doctor if she would need one of those "head-shaper helmet thingies" because I was concerned about how her right eye seemed to be bugging out a little bit. She said we should wait a little longer for the head to round out, and referred us to an opthamologist to rule out glaucoma (increased eye pressure) as the cause of the difference in the eyes. Of course I was horrified at the idea of my 2-week-old having glaucoma, but the opthamologist did all the tests & told me that her eyes are perfectly fine - the apparent difference in the eyes is just because of the shape of Ember's forehead. So this past Monday Ember had her 2 month checkup and I brought up the issue again because the shape doesn't seem to be improving at all. This time I was referred to an orthotic specialist to have her evaluated for a helmet. The appointment was yesterday. He said that he couldn't give her a helmet because he believes she has Craniosynostosis, specifically Right Coronal Craniosynostosis. She has all of the distinct symptoms (forehead flattened on one side & bulging on the other) , including the more rare ones like crooked nose, one eye lower than the other, and uneven ears. Cranio can only be confirmed by a 3D CT scan, so we are waiting for an appointment to get the scan done.

Some Cranio info:

What is Craniosynostosis?

Craniosynostosis is a congenital anomaly characterized by the premature closure of one or more cranial sutures (the fibrous joints between the bones of the skull). The disorder results in an abnormal skull and head shape. Most cases are sporadic, although there are several genetic syndromes with Craniosynostosis. Disorders of the fibroblast growth factor receptor molecule have been recently found in some cases of hereditary Craniosynostosis.

What Are The Symptoms of Craniosynostosis?

Most children with Craniosynostosis do not have any symptoms; the head shape is abnormal, and the face may be malformed in certain cases.
Rarely, symptoms of increased pressure in the head such as headaches, decreased appetite, vomiting, or even developmental delays or mental retardation may occur.

How Does A Craniofacial Anomaly Occur?

Five separate bones make up the cranium of the head: the occipital bone (back portion of the skull); two parietal bones (on either side of the skull); and two frontal bones (front portion of the skull). The bones, which are in place by the 5th month of gestation, are like pieces of a puzzle, and are initially separated by sutures (or fibrous joints). The skull bones, coupled with the sutures, form a protective shield for the brain.
As the brain grows, the sutures allow the skull to expand rapidly. If for any reason one or more of the sutures closes too early, the skull grows in a different direction where the bones are not resisting growth, thereby resulting in skull deformities.

What Treatments Are Available?

Craniosynostosis surgery is commonly offered to correct the cosmetic deformity of the skull and face. Rarely surgery is necessary to reduce intracranial pressure and allow for brain growth; however, it is sometimes performed when multiple sutures are involved.
The timing and type of surgery is very much dependent on the type of synostosis and the preference of the surgeon. Most often, surgery for craniosynostosis is performed during the first several months of life.
Helmets or headband therapy may also be used as an adjunct to surgery for selected cases. Some neurosurgeons use headbands for occipital plagiocephaly. In this type of therapy, the child wears a customized, external helmet or headband for a prescribed period to direct proper skull growth.

Here are some of the more obvious pictures:

In the hospital

It's more obvious from above