Specialist Update

Well, we had ourselves convinced that she just had a mild ridge and everything would be fine.


We had our appointment with the pediatric plastic surgeon today. He positively identified Baby Girl as having Metopic Synostosis, as we thought. He said that there are severe cases in which the defect is definitely causing major deformities, intracranial pressure, delays, all of the above, etc and surgery is needed immediately. She does not fall into that catergory. He ordered a CT scan to find out more but he is almost sure we will have to have surgery. Not what we wanted to hear.

She has pinching at her temples and her head is bulging above her ears and the back of her skull is widening due to the brain's inability to expand outward at the front. Once he points it out it is obvious. The good news is that her eyes are not too close together so they can leave the ridge above her eye sockets alone.

My head is spinning, I'm scared, I'm confused, I'm wondering what to do, who else to talk to, whether we need a second opinion, whether I should question him, whether my brain is working at all right now. I've been doing all kinds of additional research and found an online forum/message board for families with this diagnosis. I can't even begin to digest the information there tonight. All I know is I looked at the pictures people posted of their children post-op with tears streaming down my face. The realization: Baby Girl will have to have her skull cut apart. The only thing the doctor told us about the surgery (until he has more info from the CT scan) is that she will be in the hospital for three or four days and her eyes will swell shut after the first day.

I know we will get through this. As my mom and MIL both said, at least we are not fighting for her life. But that doesn't mean that this hasn't been a terrible day for us.

Now we wait to hear we have been approved by our insurance for the CT scan.

Tomorrow Will Be a New Day

Thank you all. I know she is fine and she will be fine. No matter what. I know we will be fine. I will find a job. We will probably move. Far. It will be a transition, but it will be fine.

Actually, I am sure it will be more than fine. It will be good. Right now, everything sucks and I hate it. But it will eventually be good again.

Last Monday, on Valentine's Day, Baby Girl started to crawl. It is the cutest crawling I have ever seen. She had been so determined. She knew exactly what she wanted to do, knew it was possible, just had to get the mechanics together. She made three crawling movements, or whatever you want to call it. By Friday she was zooming around like a bullet.

On Saturday she decided she wanted to stand. Same story. She knew what she wanted to do, just needed to make it happen. So today she did. She pulled herself up using the bottom stair and stood. I presume walking is next and as soon as I see her get the fire in her eyes to do it I know to give it about three days.

I think she will conquer the world, one milestone at a time.

Also today, first thing this morning, she said mama. She has been saying it all day. Her first word. I know she probably doesn't connect it with me yet but I don't care. It made me cry nonetheless.

Filed Under: Things We Didn't Need Right Now

I used to like our pediatrician, until she called my child a Klingon.

Yeah, that really happened at our appointment last Thursday.

But it's not all fun and games and future Trekkie conventions. We heard the words parents never what to hear: "You're going to have to have a specialist look at this."

Baby Girl has a ridge running vertically down the middle of her forehead. I always noticed it but never thought much of it. Apparently I should have. Based on what the doctor said and what I have researched, I feel it's likely that Baby Girl has craniosynostosis. Specifically, trigonocephaly otherwise known as metopic synostosis.

When she first told us I for some reason totally disregarded it. My baby is totally fine, I thought. That's just her skull. But wait, people don't normally have big ridges on their foreheads do they...?

But once Hubby started freaking out, so did I. So I did what any neurotic parent does and googled the shit out of it. So when you're born the different pieces making up your skull are separate to allow your brain to grow rapidly and then the different bones fuse at "sutures" (the point where two plates meet) at around age two. Sometimes one or more of these sutures fuses prematurely or even before birth. Being that Baby Girl has always had this ridge it seems that hers would have closed before birth. Now granted, we have no confirmation that she actually has this but I am pretty darn sure.

So then comes the doom and gloom. Most children who have this condition need surgery to correct it. Surgery is done on the skull to separate the parts that have fused and reconstruct the skull properly and to allow for growth.

So surgery. On baby's head. Wonderful. Specialist. Great.

After many hours worrying, crying, and googling, I'm trying to feel optimistic. Her head is not misshapen besides the ridge and she is developing just as she should. Still don't want someone sawing my baby's skull apart. The pediatrician's office told me it would take months to get an appointment with the specialist. Thank God it didn't, the appointment is Monday.

Stop The Ride! I'm Gonna Hurl!

Whee-Haw! This is my 100th post! I wish I was in the mood to reflect or celebrate... but I'm just not.

I've been riding an un-fun roller coaster since I was laid off in the middle of January and I really wanna get off of it. I'm stressed, I'm exhausted, I'm emotional, I'm struggling.

I couldn't even begin to tell you all of the decisions we've made, unmade, remade, and then changed. I feel like my life is careening in a new direction but I just wish I had the map.

On a good note I was asked to do some hourly consulting work for my company so that will give me something to do and a little extra money. Unfortunately, it doesn't really solve our problem which is that I really don't see an employment future for me in Phoenix. We have resigned ourselves to moving, but to where we don't know. There was one company here I was really banking on but it turns out things are not good there, they haven't been able to be profitable, and the people who work there are generally miserable. Yay, sign me up!

So where to next? I wish I knew.

Another huge problem is our house and what to do with it. We have only owned it for one year and we think we would not be able to sell it for enough money. A short sale is not an option given some things about our situation and we don't feel good about walking away not to mention what a foreclosure would do to our pristine credit. :( So we could rent it out (ugh, headache) or try to sell it and put some of our savings towards paying off the difference for the mortgage.

There have also been some job opportunities come up that I was super excited about and then learned unsettling things about and that just contributes to the roller coaster.

So, just generally... yuck. I just want to figure out the next step and be done with this limbo.

As far as the good things in my life (and there are many and I am thankful)... Baby Girl is crawling! She just started on Monday and she is going for real now! She is just so cute and goofy and I love her so much! She has been crabby some though, I'm pretty sure teething is bothering her again because she won't let me near her mouth. She is eating baby food like a champ but if you try to get her to try a cheerio or one of those flavored puffs you would think someone was trying to pull her arm off. Meltdown! So I just always put them on her tray while I prepare her cereal or other food and hope one day she will want to eat them.

There's just been a lot going on in my head and I also hate that this is negatively affecting my parents, who moved here to be near us. We'll get it figured out, it's just gonna be super stressful until we can get there. I also was trying out a new web browser and it wouldn't let me comment on your blogs so I have been reading and wanting to comment! I switched back to IE so I could stop being annoyed by the other browser's B.S. security features.

Maybe next time I post I can be less depressing.