Surgery Date

After our appointment on Tuesday I was feeling pretty good. We had all the information we needed and her doctors gave us confidence that once the surgery was complete it would simply be a blip in Lucy's life story.

But now I feel we've been let down a little bit.

When we first discovered that Lucy may have sagittal synostosis we were quickly rushed into tests and into additional clinic appointments. We were told that time was very important. Dr. Wood himself told us that most of the babies he operates on with Lucy's same condition are four months old. Lucy was already five months at the consultation.

We were also told that Lucy's surgery needed to take place between four and six months of age.

We were told not to worry. She's within the range. It will be fine.

Then I received the surgery date call on Wednesday.

November 16.

Lucy will be seven months on November 24. SEVEN months.

I expressed my concerns to Dr. Wood's assistant and she seemed to understand. But the problem, you see, is that Dr. Wood is out of the country for most of October. She told me she would bring up my points to Dr. Wood and call me the next day.

She called me yesterday and said she spoke to Dr. Wood and he said November 16 would be "juuuuuuuust fine."

So now I feel as if we've been misled on one end or the other. Either it isn't as important as they first told us that Lucy has this surgery prior to her being six months...

...OR...

...it IS important but because Dr. Wood's schedule doesn't permit suddenly seven months isn't too bad.

Dr. Wood is the specialist and he seems very dedicated to his work so I have to trust that he wouldn't get into a situation he didn't think was right. But I just hope he isn't gambling at the sake of my daughter.

My other cause for concern is that Lucy will be a whole two months older by the time the surgery date rolls around. Veteran parents out there know how much a baby changes in two month's time.

Lucy has already started rolling over and she's desperately trying to crawl. Once the surgery is complete Lucy will have a pronounced soft spot on her head that, we're told, will take two months to close. A younger baby wouldn't have to worry too much about injuring it because they aren't yet mobile. But it's a whole different ball game for a seven- to nine-month-old.

Brian and I are planning on having a second conversation with Dr. Wood on the new set of implications this poses based on her age at the scheduled date of surgery.

I'm hoping to come out of that conversation with either a renewed sense of confidence or a new surgery date. I think the latter is a far stretch so I'm praying for the first one.

An Afternoon at Gillette

This afternoon we spent four hours at Gillette Children's Hospital in St. Paul getting to know Lucy's team, doing some tests, asking questions and getting an official diagnosis.

A lot of our questions were answered but some major ones are still left unknown. One of those being her surgery date. Once her surgical team's schedules are coordinated we should know the date by Friday or Monday at the latest.

After getting her height and weight we met with Dr. Wood. Dr. Wood is Lucy's Craniofacial Surgeon. He will be doing the bulk of Lucy's operation. Brian and I were both very impressed with him and his knowledge on Lucy's condition.

We were hoping that Lucy would be able to have endoscopic surgery (minimally invasive) but after listening to Dr. Wood's comments about long-term studies we feel confident that a full ear-to-ear incision is better. This allows the doctors to complete all the work needed in one operation with a very small chance (less than 1%) of a follow-up operation or even any follow-up care. This means that after the surgery Lucy will not have to wear a CranioCap. The post-op appointments are only at two weeks, three months, one year and then yearly until Lucy is three or four years old.

The downside of the full ear-to-ear incision is that it is major surgery. She will lose enough blood to necessitate a blood transfusion. The surgery will also warrant a four-day, three-night all expenses paid (by insurance, of course) vacation to the pediatric ICU. Well actually, the doctors said that if she is recovering well enough after night one she can move to the general patient floor of the hospital.

Dr. Wood explained that Lucy's ear-to-ear incision will be made in a wave pattern so that when her hair grows in her scar will not part her hair and the incision site, therefore, will be virtually unnoticeable. We saw a lot of before & after photos to illustrate this point.

Once the incision is made part of Lucy's skull bone will be cut and removed. This will create the suture that has prematurely fused. Dr. Wood may need to replace parts of the bone by bolting them back into place. These bolts will dissolve over time.

Once part of Lucy's skull bone has been removed her head will take on a more round shape as her brain grows into genius-size levels. I may have added that last part on myself.

After meeting with Dr. Wood we went down to imaging to confirm Lucy's diagnosis with a CT scan. The room was so inviting and so relaxing I wish I could have crawled up on the table myself and taken a nap. There were six plasma screen televisions on the ceiling all with aquarium scenes. That paired with the soothing music and I could have sworn I was at a spa. Lucy was totally diggin' it too.

After the CT scan we met with Dr. Petronio. He will be Lucy's pediatric neurosurgeon. He will be present during the surgery in case his expertise is needed.

The surgery will take approximately two and half hours. The majority of that time is spent getting her IV lines in and having her fall asleep. The actual surgery is about an hour or less.

Following surgery she will have a turban bandage around her head with a drainage tube to help reduce swelling. The doctors told us we may notice a difference in her head shape immediately.

Lucy's doctors expect her to be back breastfeeding by day two. Until then I'll have to dust off my pump and get to work just as I did when William was in the NICU.

We were thrown a ton more information than I can log in one post so go ahead and ask your burning questions if you have them and I'll answer what we know.

Dr. Wood's best comment was that this is a paradoxical procedure. On one hand it is major surgery that comes with risk. On the other hand, as the primary surgeon for sagittal synostosis in all the surrounding states, this is a common operation for Dr. Wood. He did two yesterday and does about 100 per year.

As a mother, that validated my feelings. I needn't be in freak-out mode but at the same time it isn't going overboard to make a big deal out of my baby girl having her tiny little head cut into.

Thanks to you all for your continued prayers and support.

My Little Lucy Girl

Jenny told me a number of times this past week that I am two things. One, I'm an official contributor to this site. It's true; I have the log-in to prove it. Two is I'm lazy. So here I am with not much planned out for my first post. I have been thinking a lot about all the letters and calls and notes and emails from people letting us know they care. Please know that they mean the world to us. I didn't think we knew this many people. I didn't know Lucy was so popular at 4 months. She's like a Jonas brother or Scott Baio. Take your pick. I choose Baio.

Someone posted a comment earlier that Lucy is a charmer. I think this about sums it up for me. Jenny can see it coming when she sees us together. She's got me. She's got me locked down, figured out. She knows I'm going to be a complete pushover. William has got me too, but it's just different.

When Lucy was about a month and a half or two months, Jenny commented that I suddenly "loved" my daughter. I think this is true for all fathers. Month 1-2 you're on autopilot. All they do is sleep and when they're awake, you can't really do much to help other than change them. Then they start looking for you when you speak...then the smiles start...and that's when they get you.

It all started with a dance. I would hold Lucy up with both arms so we would be face to face. We would dance and I would sing. It always got me a couple dozen smiles and more times than not, laughing. And Jenny was right, I fell in love.

Head Shots

Yesterday afternoon I decided to take some photos of Lucy's head.

But the little stinker wouldn't stop smiling.

I think she thought she was some sort of a baby model at a photo shoot.

She saw the camera and knew it must be go time.

But finally I distracted her so I could get some profile and top shots.

Here you can see the bump that protrudes from the back of her head.

And from the top you can see how her head is more oval shaped rather than round.

Here's another shot that shows how long and narrow the top of her head looks.

It's funny. Now that she's been diagnosed, it's so clear to me how abnormal her head is shaped. But it was so easy to miss before we knew what we were looking for.

Treatment

I think I neglected to make clear in my earlier posts that the treatment for Lucy's condition is definitely surgery.

Sagittal synostosis is a birth defect.  On some babies you can notice right away at birth.  On others it takes a little bit of head growth before it becomes noticeable.  As I mentioned earlier, I always noticed her oblong head shape (when looking at the profile view) but never knew it was a medical issue so I never brought it up at any of her well child visits.

Her condition becomes even more obvious when you feel the top of her head compared to other babies that are under a year in age.  The top of her skull is as hard as an adult's.  You can barely detect the remnants of her soft spot.

So far our doctors have told us that Lucy's condition is not common but it's not unheard of either.  Our pediatrician has seen three or four other cases in her 20 plus years as a practitioner.  Her most recent case is now a teenager.

At this point we know that surgery entails removing part of the bone on the top of her skull to allow room for her brain to grow.  As her brain grows it will reshape her head making it more round.

We don't know how common the surgery is.  We also don't know how long, how many or where the incisions will be.  From what I gather it all depends on the age the baby and how significant the premature fusion has been.

Some Internet stories that I have read put the post-op recovery time at three or four days in the pediatric ICU.  Most say that there is quite of a bit of noticeable pain in the first two days following surgery.  This scares me.  A lot.  But everyone goes on to say how quickly their child bounced back to their old self on days three and four.

Some patients need to be fitted for a CranioCap following surgery.  We are not certain yet what Lucy's game plan will include.

I hope I answered most of your questions.  A lot of the specifics are still unknown to us as well.

I want to thank everyone for their support.  My inbox was flooded soon after I sent out the initial email.  Many of them included offers to watch our not-to-be-forgotten son, William.  As appointment dates approach I will definitely look in to taking you up on those offers.

Most of all, thank you all for your prayers.  We know from previous experience it's truly the only thing that will make all of this bearable.  That and maybe a few beers thrown in for good measure.

The Consultation Appointment

Yesterday our pediatrician told us that someone from her office would make our referral appointment with Lucy's specialist, Dr. Wood.

She told us the appointment would be for today or Monday at the latest.

The appointment is for Tuesday, September 22.

So I'm obviously not happy about that.

Apparently my pediatrician was mistaken.  The appointment didn't need to be that immediate.  The surgery for her condition needs to take place somewhere between 4 and 6 months of age.  Lucy is currently 4 1/2 months.  But she will be almost five months by the time that appointment rolls around.

Talk about cutting it close.

But we're already having to overbook Dr. Wood just to get in by September 22 so I'm just not sure what else I can do to speed things along.  Apparently craniofacial surgeons are in hot demand in the Twin Cities.

So begins the waiting game...

How Did We Get Here?

I woke up this morning hoping it was all a bad dream. But alas, the phone calls, text messages and emails continued to roll in so I knew that it must be true.

How did we get here? Twenty-four hours ago I had a normal four-month-old. Now she needs a pediatric neurosurgeon?

Yesterday morning was like any other. I was rushing to get both kids dressed and out the door by 10 a.m. Lucy had her four month check-up at 10:30 and since we're still seeing our original pediatrician back in Woodbury I wanted to leave enough time to make the drive from our new house in St. Paul.

We got there in time and Lucy was seen right away. She weighs 13 pounds. Still a little peanut at the 25th percentile. But she's also very tall at 26 inches and still in the 90th percentile.

But there was something odd about her head circumference. She jumped from the low end of the percentile all the way to the high end in just two month's time.

At first I thought nothing of it. Maybe a growth spurt.

When our pediatrician walked in the room Lucy was laying on her tummy; a favorite position of hers. Her head bobbed up and down as she tried to watch her big brother jump about.

Laura, our pediatrician, said, "Do you notice that her head is sort of long?"

"Yes!"

I've always noticed this but just thought that was her unique head shape. I was always told to watch out for flat head syndrome and she definitely doesn't have that.

A second pediatrician's opinion prompted a same-day appointment to radiology for x-rays and an ultrasound.

I called Brian right away to fill him in on the doctors' concerns. He said he would take the first train out of downtown and I said I would meet him at the closest station.

At this point we had already been at the clinic for two hours and William was flying off the walls. I called my friend Amy at the last minute and she graciously agreed to watch William so that Brian and I could take Lucy back to the clinic for her tests.

First she had an ultrasound. She thought it was pretty cool. She kept watching the monitors and looking around. I think she liked the warm gel on her head.

After the ultrasound we were ushered back out to the radiology waiting room and then soon called back in for x-rays.

X-rays sucked.  There's no better description.

They had to swaddle her up with her arms pinned to her sides and then wrap tape around her whole body.  A straight jacket for babies.

She then had to lie on the table while the tech firmly held her head in different positions so they could take six or seven pictures of her skull.

She screamed violently.

When it was over she promptly fell asleep, no doubt completely exhausted from all her sobs.

We were then told to go home and wait for a phone call from our pediatrician.

But we live in the age of Google so of course I went to work as soon as my computer was in front of me.  When I started to see images of other babies diagnosed with similar skull deformations I knew right away this was what my little Lucy had.  The pictures of their heads were identical to hers.

Laura called around 5:30 and confirmed what I already knew.

Lucy has sagittal synostosis.  This is a condition where the top two skull plates fuse together too early.  Normally all babies have a soft spot and overall a generally soft scalp.  This allows an infant's brain to grow and for the skull to form a round shape around it.  But because Lucy's top two plates are already fusing together it's causing her skull to compensate and her head is growing in a more oblong shape.

Right now this is purely a cosmetic problem.  But if we continue to let her head to grow without intervention it will cause pressure on her brain.

Lucy's specialist will be Dr. Wood.  He is the craniofacial surgeon at Gillette's Children's Hospital in St. Paul.