Our Little Lucy Girl

Three Weeks Post Op

2009-12-07T21:50:00.003-06:00

This morning as I was nursing Lucy one of the knots from her stitches came out. There are four knots total. One by each ear and two that meet in the middle of her head. This was one by her ear. It just fell right into my hand without any pulling or tugging.

Then when she woke up from her afternoon nap I noticed the knot by the other ear was loose and when I touched it, it too fell right out. The scab from her drainage tube also came off.

Because both of those knots came out the stitches are really loose and pull out from one another with ease. So now I've become obsessed with her stitches like you'd pick at a bad scab. She was in the bath for an extra long time tonight while I picked and gently pulled. To help my weird habit Lucy could care less so I can meddle to my heart's content.

Most of the side stitches are now out but the ones on the top of her head are still pretty tight so I've left those alone.

Her incision looks amazingly well. Tomorrow we go to Gillette's for her follow-up appointment and I'm sure she'll get gold stars across the board. I'll post here tomorrow on that.

I've received a few elbow jabs to post some recent pictures of Lucy so here there are. Take note that these were taken before her stitches started coming out.

More Before & After

2009-11-23T09:56:00.004-06:00

We had a busy weekend full of birthday celebrations and playing nurse to both our kids. After his totally awesome third birthday William came down with croup. He's doin' it up on the couch in front of the Disney Channel as we speak. Here's hoping it's all gone come Thanksgiving break.

Lucy has been doing well. We've cut back her pain meds to nighttime sleeping only and she seems to be doing just fine as long as we're not trying to get her dressed or lay her down to change her. Extreme torture, you know, even for a baby who hasn't gone under the knife. The only other challenge for us lately is that her antibiotics cause diarrhea and so we've been doing major clean-up every. single. day. 'Nuff said on that topic.

Each day that goes by Brian and I cannot get over how different Lucy looks -- and by that I mean for the better. If you've only ever seen Lucy a few times you might not notice a difference. But I keep saying that I never realized how bad her sagittal synostosis was until it got fixed. Everything just seems so much more proportional. Her forehead isn't as long. Her eyes aren't as wide apart. In fact, I think her eyes are even bigger because some of that pressure from her forehead jutting out has been removed. And the doctors say that her final head shape still won't be for another couple of months.

Before - October 15, 2009

Before - November 12, 2009

After - November 22, 2009

Hey Don't Forget About Me, Guys!

2009-11-21T16:30:00.004-06:00

It was a certain someone's birthday today. Lucy did a great job at letting the spotlight shine on her big brother for a little while. We swam, we ate pizza and cake and opened presents. Then we came home and we all fell down.

Happy birthday, William! It has been a supreme privilege being your mommy these past three years. We love you!

Day 5

2009-11-20T15:27:00.003-06:00

Last night was pretty good considering it was only her fourth night post operation. She woke up a little after midnight needing some pain meds. They take about a half hour to kick in so she and I wandered downstairs and watched some DVRed "Ellen" and "Oprah" until she started to feel more comfortable. There was something soothing about being awake in the dark and quiet of my own home with my baby girl.

She awoke again around 4:30 a.m. and this time Brian went to comfort her. Again she was in quite a bit of discomfort which is really difficult to watch. She has a tiny whimper accompanied by the biggest crocodile tears you've ever seen. That's how you really know they're hurting. When they can't even muster a cry.

When she got up for the day today I noticed the swelling has gone down quite a bit. We put her to sleep on an incline in her crib and she prefers to sleep on her side. Each time to we put her down we make sure she's on the opposite she was before. This means that her eyes alternate being swollen . It's pretty funny. First she's winking with her right eye. Then she takes a nap and when she wakes up she's winking with her left.

One of the biggest challenges we've been dealing with is that Lucy is currently on a ton of medication -- five, to be exact -- and she hates every single one of them. If she can manage, she spits them right out and into our face. So today I got a little creative and mixed four of them in warm apple juice and some baby cereal. She gobbled it up. So I think that will be the trick from now on.

After her dish of cereal I took some more pictures. These photos are more for me than anything else so that I can see the progression of change in her head but I thought you all would enjoy them as well.

Home!

2009-11-19T20:10:00.004-06:00

Lucy finally had her own jammies on. Here she is with mommy ready to bust out of that hospital.

"Let's go, Dad!"

Saying goodbye to the nurses

Grandma welcomed us home with a big roast dinner with Uncle Jim's potatoes and some butternut squash. Goodbye hospital food! Lucy resumed her usual place at the dinner table.

And now for just of taste of the proof that this whole ordeal was worth it. Here's Lucy's before shot on September 17, 2009.

And here she is this evening just three days after surgery. The most noticeable spot is on the back of her head. Her neck, face and scalp are still quite swollen. We are told all the swelling should be gone in three weeks and her final head shape will appear within two to three months.

Both the kids are in bed and Brian just opened a bottle of wine. I think we'll settle in and watch our favorite Thursday night shows. Ironically, it's the exact same thing we did on our first night home after William was hospitalized. Getting back into the swing of things always feels so good.

Horray!

2009-11-19T11:04:00.002-06:00

Neuro just gave us the OK to go home! They have to get some paperwork together and take the port out of her neck so it might be a while but it's definitely nice to know we'll be on on our own turf by the end of the day.

Thank you again for all your prayers. I just know Lucy would not have recovered as well and as quickly without all of you.

Therapy Dog Visit

2009-11-19T10:59:00.003-06:00

Trooper visited Lucy this morning! He's a golden retriever therapy dog. I really wish William would have been here but Lucy thought it was pretty cool too.

Day 4

2009-11-19T10:10:00.004-06:00

Last night was a bit of a roller coaster.

If you've ever had surgery or something similar you know how awesome it is to start feeling a little bit normal. That's how our Lucy girl was last night. She was laughing and giggling and want to jump-jump while standing on our lap.

So we went without her dose of Oxycodone thinking that maybe the Tylenol and ibuprofen would be enough.

But then 10:30 rolled around and she started to have the saddest cry in the world complete with the big lip and real tears. So I requested the Oxycodone again and within twenty minutes she was sound asleep.

The same thing happened at 3:00 a.m. She woke up, I fed her, gave her Tylenol and ibuprofen but it just wasn't doin' it for her. So at 3:30 I again requested the Oxycodone for her. I know a fussy Lucy and this was not her. This was a Lucy that was hurting.

Kids are resilient and our Lucy girl has been no exception. But I think we'll have to keep reminding ourselves that she did just have head surgery a few days ago and she deserves to have that pain managed.

She woke up this morning in great spirits. The swelling has reduced. Her right eye is wide open and she's able to get her left eye open to a slit.

The nurse came in this morning and gave her a warm bath which she loved. She's resting comfortably right now and we're just waiting for the neuro team to make their rounds so that hopefully we'll get an a-OK to go home today! We'll keep you posted.

Bouncing Back

2009-11-18T15:47:00.003-06:00

Every time I walk into Lucy's room I want to cry just a little because she doesn't look anything like my baby girl with all that swelling. She looks more like a champion sumo wrestler. But then she wakes up and talks and plays just like her old self and then I'm reassured that this is indeed my little Lucy.

The swelling has come down a bit. She was able to get her right eye open just a slit. As soon as she did that a huge smile went across her face when she saw daddy looking back at her. I just can't believe what good spirits she is in for just having her head cut open 48 hours ago.

Below are a few pictures of her sitting up and playing with her toys. If you compare these pictures with the ones we took right before her surgery you can see how swollen and chubby she looks from all the fluids. We're told every day will be a little better and all the swelling should be gone in a few weeks.

Off with the Wrap

2009-11-18T12:06:00.004-06:00

Late last night - As you can tell, the swelling really started to pick up and by night time she wasn't able to open her eyes. A little scary for her at first but she calmed down at the sound of William's voice. I think she was bracing for the accidental hit to the face.

"Dad, I don't want anyone to see me like this!"

Lucy was not a fan of the doctors taking off her wrap and pulling out the drainage tube. I think that was a little painful for the baby girl. She's been sleeping quite a bit this morning and having that off is already helping some with the swelling. We'll start on Ibuprofen this afternoon and she might be able to open her eyes by this afternoon.

2009-11-17T21:38:00.001-06:00

Both of lucys eyes have swollen shut so it was a difficult evening. She was awake but couldn't see anything so she was rather scared. Her swelling has increased dramatically since the pictures i posted and her eyes are black and blue. It's not easy to look at but we still think she's pretty cute. When they take the head dressing off tomorrow the swelling should go down. So if we can make it through the night, tomorrow should be better.
Good night!

Happy Girl

2009-11-17T21:32:00.000-06:00

Swollen Beauty

2009-11-17T15:50:00.004-06:00

As you can see from the photos below Lucy has a lot more swelling today. They gave her some Benadryl to help with the itchy feeling. She fell asleep from the medicine for a long time and when she woke up her left eye was swollen shut. Our little one-eyed bandit.

Thankfully it hasn't really altered her mood. When she's awake and her pain is under control it's easy to tell that she's trying with all her might to have the same personality as she did pre-surgery. She's kicking and trying to sit up and babbling away.

Today has been a pretty boring day. We like boring. Hopefully it will be a quiet night. Tomorrow's plans include removing her head dressing and drainage tubes. All the more closer to going home!

"Hi guys!"

Trying to smile through those massive cheeks!

William's Visit

2009-11-17T15:43:00.001-06:00

"Hey Lucy, look at this cool airplane!"

2009-11-17T11:59:00.001-06:00

We were just transfered to the general floor. It's so nice to have some peace and quiet in our own room. Send a text or call our cell phones if you're visiting and need her room number.

2009-11-17T09:15:00.001-06:00

Had a wonderful night last night. I'm pretty sure shes some sort of prodigy. ODD helped too. Thats an inside joke for Uncle Mike. ANYWAY...she was up and smiling and attempting a giggle this morning. She was ok'd to leave the icu. We should be moved to the general floor around 1:00. I know a lot of you have asked about visiting and rather than respond individually I'll just say here that that should be just fine. Gillette is on the fourth floor of regions hospital. Follow signs to the PICU and then just ask a nurse for lucys room. Thanks again for all the prayers. They clearly were answered!

2009-11-16T21:57:00.001-06:00

So excited to find out the preop nurse was wrong. Both brian and i get to sleep right next to lucy in the icu all night. I get to share a hospital bed with her! Hoping she'll sleep soundly with mama right next to her.

Photos From Today

2009-11-16T17:09:00.003-06:00

Family picture this morning

Crib nametag

Getting her hospital gown on

"I don't WANNA have surgery!"

Mama checkin' in

Dad's turn

Thanks everyone for your love, support and prayers.

Things are going well. This afternoon went by a lot faster than I thought it would. The ICU is very quiet and peaceful right now -- unlike my tour last Friday. There is one other baby in here who had the same surgery as Lucy a few hours earlier. He is a little fussy right now so I assume that's what's to come for us tonight.

Lucy is currently resting soundly. She's opened her eyes a few times but is still pretty groggy from the anesthesia.

Our nurse is awesome. She'll be with us until 11:30 tonight. She wants to try to give her something for her belly when she wakes up. The morphine will start to wear off and we want to make sure her belly isn't completely empty when she's more alert.

She did throw up a little bit about an hour ago but the pediatrician told me that's very normal when babies (or even adults) are coming out of anesthesia.

That's the only updates we really have at the moment. Right now it's just watch and wait and see what she needs.

Thanks again for everything! We'll update when we have more news.

Lucy in Recovery

2009-11-16T15:07:00.002-06:00

Jenny and I think she looks just like William when he was in the NICU. Mom had cold hands and she wasn't a big fan. But she took her nukie and settled right back down. It was a quick visit but we should have her in our ICU room in about 20 minutes.

2009-11-16T14:57:00.001-06:00

Dr. Petronio just came to talk with us. He echoed dr. Woods statements. Said she did beautifully. She lost less than average blood. She was stable the entire time. They took out a 2cm strip from her skull. She has opened her eyes a few times and pupils look good. Shes got her beloved nukie. We should see her in a few minutes.

2009-11-16T14:35:00.001-06:00

I also forgot to say that dr. Wood told us lucy is the cutest baby he's ever operated on. Well maybe thats what he said in my head.

2009-11-16T14:31:00.001-06:00

PS...everytime we get paged brian goes to the phone to get all the info. The he hangs up and starts leafing through a magazine without saying a word like we are waiting for an oil change in our car. I have to say "BRIAN! What did they say?!" Drives me crazy. I'll still keep him though.

2009-11-16T14:26:00.001-06:00

Just got paged again. She's in recovery. They will come get us when she starts to wake up. 20 or 30 minutes.

2009-11-16T14:03:00.001-06:00

Just spoke to dr. Wood. He said everything went "like clockwork". Dr. Petronio, the ped neurosurgeon, is closing her up now. Still might be another hour or longer until we get to see her.

2009-11-16T13:57:00.001-06:00

Just got paged by doc. He is finishing up and we were told to head back to surgery waiting room.

2009-11-16T13:54:00.001-06:00

Dear Gillette,
You are a CHILDRENS hospital. Make a place for nursing mothers to pump in private.
Thank you.

2009-11-16T13:22:00.001-06:00

Brian just bought the biggest bear claw doughnut i've ever seen so he'll be headed into heart sugery when lucy is finished.

2009-11-16T13:03:00.001-06:00

We just had to say goodbye to the little Lucy girl. She was in surprisingly good spirits for not having anything to eat for the past 4 hours. Everyone here has been great and put us at ease. Updates in an hour. Keep her in your prayers.
--Brian

Tomorrow

2009-11-15T21:24:00.003-06:00

Thank you so much for all the calls, emails, text messages, Facebook shoutouts and any other form of technological communication I'm forgetting. It warms our hearts to know everyone is thinking and praying for our family.

Tomorrow morning we will arrive at Gillette at 11:30 a.m. Lucy's surgery is scheduled for 1:00 p.m. We are told the actual surgery will last one to two hours but that she'll be gone from us for about four hours once you factor in all the pre-op and post-op work.

Gillette has Wi-Fi so we'll be able to make frequent updates on Brian's laptop as well as through our cell phones.

At this point I'm feeling a lot more calm and at peace than I thought I would. It must be all those prayers. Brian is currently playing poker online so I'm guessing he's doing OK too. Unless that's his way of hiding his fears. Naw...he just really likes Texas Hold 'em.

Anyway keep up the prayers. As a special intention please don't forget to pray for my favorite little boy as well. When I said goodnight to William tonight he expressed some concern about me being away from him for so long. I know he'll do fine but that mommy guilt will always get ya.

Alright I'm off to bed for a good night's rest.

Friday the 13th

2009-11-14T10:49:00.004-06:00

Yesterday was not fun.

We had an appointment at Gillette's to have Lucy's blood drawn. She needed her hemoglobin and platelets checked and they needed to know her blood type for her blood transfusion.

Before the blood work the nurse gave me a little tour of preop, recovery, ICU and the general floor rooms. I wasn't super impressed. Having stayed at Children's during William's ordeal for almost two weeks I have a comparison point and Gillette's doesn't really stack up.

It was a little noisy and dingy. There is no where for me to stay on the first night except a very small shared family waiting room that is down the hall from where Lucy will be. This will be uncomfortable not only for sleeping but also the need for me to use my breastpump. On the subsequent nights there is a pullout chair for me to sleep on but nothing for Brian. Children's had full futons in every room -- even the ICU. Maybe someday when we strike it rich I'll donate some futons to Gillette's.

It's weird to me that with two healthy children I even have a comparison of the children's hospitals in the Twin Cities. But that's where we're at and we'll do anything for our kids so we're going to make it work.

After the tour it was time for the blood work.

That just reminded me of this one time when Brian and I were staying with my mom in Alexandria. We wanted to watch a movie one night and Brian made us rent Blood Work. I'm not sure if you've ever seen this little flick but don't let the fact that it stars Clint Eastwood fool you. The movie is beyond bad. Sort of like our blood work experience at Gillette.

Nice segway, eh?

ANYWAY, instead of a nurse doing the draw the anesthesiologist was in charge. It took him three time, THREE TIMES, to find a vein. And we're not talking just a finger prick here. She needed the full intravenous needle.

He tried one leg with no luck. Then he moved to the other leg where he got a little blood before he started to draw air. The third and final draw came from her arm. I was pretty livid especially since my little girl had four shots just three days earlier. By the third stick Lucy was in hysterics and completely drenched in sweat. I almost punched the doctor's lights out but thought that probably wouldn't be a good way to start our whole hospital experience.

When she was finished she looked like a battered child with all the taped up gauze.

On the positive side, Lucy was so tuckered out from all the activity that she took a four hour nap that afternoon.

Hopefully that will be the last time she'll have to be poked. On Monday all of her lines will be inserted after she's been put to sleep.

This weekend we'll be hanging low with the kiddos while we try to rest up for what will probably be a long, restless week.

Cheeky

2009-11-14T10:45:00.000-06:00

Pre-Op Shenanigans

2009-11-11T15:19:00.002-06:00

Lucy had her 6-month check-up on Tuesday where she was cleared for surgery.

She's in the 20th percentile for weight (14 pounds, 13 ounces) and 75th for height. My little model.

She received four shots and let everyone in the clinic know about it! The H1N1 vaccine wasn't available but she was able to get the seasonal flu vaccine. I'm hoping Gillette might have a dose for her during her stay. I don't want to complicate her recovery by getting stricken with any viruses!

Yesterday the Gillette pre-op nurse called me to cover all the details surrounding the operation.

Somewhere along the line, probably because we've be waiting two months now, I convinced myself that this surgery would be a cake walk. No big deal.

But when the nurse started saying things like "eyes swollen shut" and "a port in her neck" all my fears started rushing back.

When Brian got home from work I reiterated all the details I could remember. When I was finished I sighed and said, "This is gonna suck."

"Yep," he said, "It really is."

I hate that she has to go through this.

I hate that she can't nurse for five hours before the surgery.

I hate that I have to drag out my pump again.

I hate that I can't sleep in her room on the first night.

I hate that Brian can't sleep in her room any of the nights.

I hate that she has to have a catheter and a neck port and an IV and two drainage tubes.

I hate that she has to have a blood transfusion.

I hate that she'll be in enough pain to necessitate morphine.

I hate that she might have to stay in the hospital until Friday when we thought she would probably only stay until Thursday morning.

I hate that I don't get to be with William on his final days as a two-year-old.

Somedays I just need to say how much I hate this out loud so I can get it out of my system to make room for the more positive and optimistic thoughts.

Today is one of those days.

Our Little Lion

2009-11-02T12:19:00.003-06:00

Here's our little lion on Halloween.

And our Elephant.

And here's our little circus animals grabbin' some sibling love.

And here's where Brian carved Lucy's future skull incision into her pumpkin. I'm not sure if I should laugh or feel disturbed. I think I'll laugh since I have too many other things to worry about. I'm sure someday I'll look back and think I'm glad we have those memories.

And here's where Lucy tells us how she really feels about her upcoming operation. I didn't realize Lucy's pose until after I uploaded all of my Halloween photos. How funny are babies?!

Wild Woman

2009-10-30T22:07:00.004-05:00

From the day she was born Brian began calling Lucy, "Wild Woman." That, she is. She always wants to act older than she really is. Everything from holding her head up early to cutting teeth early to eating "big people" food instead of her mushed up sweet potatoes. Even her skull wants to fuse together early!

So here she is in her jumper at just a few days past her 6-month birthday. But really, she's been jumping like this for quite some time now.

In the background you'll hear the speaker phone wait message for our clinic. Always on hold. What's new? At least we can take a cute video of Lucy while we wait.

Oh and sorry if you get a bit nauseous watching this. Brian needs videography lessons.

Pre-Op Prep

2009-10-26T19:53:00.002-05:00

I know it's been a while since we've updated this blog but that's mostly due to the fact that there haven't been any updates. Ever since Lucy's surgery date has been set we've been in a bit of medical lull.

But not wanting to make things too dull Brian has decided to resign his current job at Oracle and has accepted a new position at Traust Consulting. He will finish out the month at Oracle and begin at Traust as soon as possible. If you've ever switched jobs in the middle of a medical ordeal you know this means headache upon headache when it comes to insurance. But we both know this is a great opportunity for Brian in the long run so we couldn't let the surgery make the decision for us.

We opted to use COBRA until Lucy's surgery is complete. This will provide the smallest out-of-pocket expense to us. The last thing you want to worry about when your baby is hospitalized is medical debt so we're very thankful it has all worked out for the best.

On Friday we received Lucy's pre-op packet of information in the mail. Packet? It was more like the size of the entire set of Encyclopedia Britannica.

I immediately opened it and started reading as much as I could. Brian got mad at me because we were supposed to go out for happy hour that evening and I developed a touch of the Debbie Downers after looking through the information.

It's been so long now since we've learned of Lucy's condition that it's been easy to continue on with our normal daily routine. But the whole idea of surgery has been a bit of a nagging hangnail. Some days I just want the whole thing over and done with and other days I wish November 16 was a bit further off in the future.

Lucy's pre-op appointment is set for Tuesday, November 10. We'll see her regular pediatrician and double this up with her normal 6-month well child exam. At the pre-op appointment her pediatrician will clear Lucy for surgery. This means she can't be sick in any way. No fever, no runny nose, etc. I'm very nervous about this with November being the height of flu season and with the H1N1 virus hitting its peak across the Twin Cities.

William, Lucy and I do attend Early Child Family Education classes once a week but our last day prior to the surgery will be November 3 just to ensure she isn't exposed to anything. If you or your family is sick please take caution in stopping by our home.

Following her pre-op appointment we will need to go to Gillette's on Friday, November 13. Lucy will need a blood transfusion during her operation so she needs to be typed beforehand. We've had multiple offers of people willing to donate blood but after reading the information that was provided to us Brian and I have decided to use Gillette's blood bank. This day and age, blood from a blood bank is actually cleaner and safer than blood from a relative. William also received a blood transfusion when he was in the NICU and we used the blood bank at that time as well.

Thank you all for your continued support and prayers. We will be updating the blog more frequently now that the surgery is just a few weeks away so check back often.

Surgery Date

2009-09-25T10:37:00.003-05:00

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

2009-09-22T19:06:00.003-05:00

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

2009-09-21T08:05:00.001-05:00

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

2009-09-18T09:08:00.005-05:00

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

2009-09-12T11:16:00.001-05:00

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

2009-09-11T12:49:00.000-05:00

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?

2009-09-11T12:37:00.000-05:00

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.