New Milestone

I've gone back and forth about whether I really want to post something so personal on a blog a lot of my friends and family read.  But in the end I decided I wanted to share because I think it's important. We reached a milestone this last week with Julia.  The six figure milestone...as in her medical bills have now exceed $100,000.  Over 80% of that was from the five days she was in the hospital last month.  I'm not even sure we've received them all yet as another came in last week which pushed us over the six figure threshold.  And this is for honestly a fairly standard procedure with no lifelong residual therapies needed.  Not that we thought of it as routine but as I said, Children's Hospital reminds you that what is something your friends and family have never heard of is something they battle every day or week.  Which is comforting that it's so familiar to the surgeons and nurses but terrifying in that so many family's are going through it as well as things much scarier.

I want to stress that not only are both kids happy and healthy (which is most important) but that we have wonderful medical insurance as well as an emergency savings to handle this and are in no way in any financial trouble.  But it makes me shudder at what would happen if we didn't.  If we like most Americans lived with too high debt and were one emergency away from bankruptcy.  Or if we didn't have medical coverage with a reasonable out of pocket maximum through work.  I talked with a coworker a few weeks back who told me that our story with both Jonah and Julia as well as a friend of hers who had a high medical needs child made her realize how differently she had to think about planning for getting pregnant.  And that's sad because planning to start a family should be blissfully happy not stress inducing.  But better a little pre-planning than catastrophic stress later.  So I decided to share.  Julia is at $106K and counting, Jonah I never really calculated but a decent estimate would be about a quarter million with 95% of that occurring during his first two months of life and luckily very little over the last 3.5 years.  I can honestly say that in both cases I considered the costs so I could adequately budget for them, but that I didn't have to base my decision on what was the best course of treatment for them on what we could afford.  And we shouldn't have to, having your child have surgery is quite stressful enough I assure you.

I don't want to get into all the political arguments surrounding cost of care and insurance, that's not really my style and many people wiser than me have expressed all sides of that debate.  Rather I want to encourage everyone to plan for the unexpected in their own lives, be it medical or otherwise by getting your finances as healthy as possible to weather whatever storm it is that will hit throughout your lifetime.


Julia says hello and she wants to end on a happy note, mom is so serious...

Julia Update

Thought I'd provide an update on Julia, she's now 6 weeks post-op which is a milestone in that the first six weeks are the most crucial in terms of her skull pieces knitting together and becoming sturdy.  Julia started at daycare the beginning of last week and has readjusted pretty well, too much to look at instead of napping, but that's to be expected.

A few posts back I showed her first week in photos, I thought I'd dig up a few more to show the changes over the last month.  Here is Julia 2 weeks pre-surgery and two-weeks post surgery, you can see how the overall shape of her head has changed quite a bit and the ridge on her forehead has been smoothed out.

     

Julia four weeks post-op at the fourth of July parade and cookout.

 

Five weeks post op this last weekend, just because I can't believe how you can't even really notice her incision in this lighting. Her hair has started to come in; though with how light and fine it is it'll probably be a while before it truly hides anything.

Post-Op Appointment

We had our post-op appointment with Dr. Jensen at the end of last week and he says she looks great!  He's very happy with how the incision is healing and with the aesthetics of how her head is shaped.  He said there's still quite a bit of swelling but by the time he sees us again in 3 months that should be mostly gone.  He said to expect her head to be lumpy-bumpy, even more pronounced as the swelling goes away, which will remain for months or even a year or two.  He said the stitches will fall out on their own and we have no restrictions in terms of bathing her.  He took a few photos of Julia and was nice enough to pose for one of our own for her scrapbook.  He reminded us that we had his beeper number and we could call day or night if she bumped her head or we had questions.  But he expected all would be fine.  He answered the few questions I had and said he'd see us in 3 months for a regular checkup, another CT scan at the one year mark and then annually after that.   Whew!!!

She's nearly back to her regular night time schedule too, occasionally wakes up 1-2x per night and self-soothes or we replace her pacifier.  Other than that she's asleep from 8pm to about 6am and will head back to bed after eating if it's a weekend for another hour or two.  She'll be out of daycare for another 2-3 weeks and then back to normal routine.  I brought her with me to drop off big brother this week and everyone was amazed at how great she looks considering all she's been through (or, at least that's what they tell me :)

 Julia says, "piece of cake!" (almost exactly 2 weeks post-op)

 

Julia out at the park with the family, 16 days post-op.

A Week in Review

Well, since updating the blog was an utter fail during our time in the hospital, I thought I'd recap now.  That way we'll remember what happened when (as I know timelines get fuzzy with age) and it'll help future Cranio moms to know what to expect (big thanks to those that came before, it really helped ease my mind!).

So, my last post was last Wednesday.  Thursday we both worked and the kids both went to their in-home daycare for the last time.  Big thanks to her for keeping the kids healthy for the entire 5 weeks, unbelievably she emailed to let me know both her and her son came down with a high fever the very next day!!!  We packed up the car and headed out of town immediately after work, picking the kids up along the way.  We dropped Jonah and the dog off at grandma and grandpa's house and had dinner with them.  Then it was up to the Ronald McDonald House as they had called earlier that afternoon saying they had a room available.  For those that have (thankfully) never needed to stay there, you never know until the day of whether there's a vacancy, but luckily once you're in you're welcome to stay the whole hospitalization.  RMH in Milwaukee has been operating over full capacity for several years and just broke ground on a project to double the size of their facility.  It's a wonderful place to stay and even donating more than a hotel would cost us we still felt it was the perfect place to be, the volunteers are wonderful, they're right across the street from the hospital, they offer meals-to-go and refrigerator/laundry/etc for use while you're there and they have a clean playground that Jonah was able to come visit and play at one day.

After checking in we pretty much got all settled for the night and went to sleep.  We knew it would be a big day and figured Julia wouldn't sleep as well away from her own room.  She did great and other than me waking her up at 5:30am to feed her one last time she slept through the night until about 7am!  More than I could have hoped for.  We had to be to the hospital at 9:30am so we took turns getting ready and gave her a really good scrubbing (at the hospital's request) and headed over.  We checked in at the hospital at 9:30 in pre-op and got all her vitals and hospital bands and changed into her hospital gown.  And waited (as expected).  I'm convinced they build in time in case you're late so they don't delay the operating room or surgeons. 

They started almost exactly on time, coming to collect her around 11:15am and coming out to tell us they were done around 4:15pm.  They provided two intermediary updates via phone call to the surgical waiting room letting us know all was going as expected.  They did have to do a blood transfusion during surgery and another that night and another the next morning, a few more than planned.  Once they were done we met them in the hallway for a quick kiss before being debriefed by the surgeon and waiting another hour for her to get settled into her room in the ICU.  He explained that because of the shape of her head he had to take a slightly different approach but that she looked great and he foresaw no problems.  There was a small tear in her dura (the leathery muscle that protects the brain) so they were going to be cautious over the next day and use lighter suction.  Then we were given a ICU tour there and settled in.  We ended up staying there only about 24 hours.  AJ stayed overnight at the hospital in her room and I stayed across the street at the RMH.  Every night we switched off so we weren't zombies.  Between nurses taking vitals every 3 hours plus Julia not sleeping very well anyways, the person staying overnight got very little sleep some nights.  But I'm so glad someone was with her literally 24 hours a day, it made me feel better even if she didn't notice early on (though I think she did).

The first morning post-op I rushed over to the hospital so I could be there for rounds.  They said she was doing well but crit was a little low and she needed another transfusion.  Overall they were happy with her progress and they were moving her out of the ICU that day.  What?!?  But it was true, they gave her what would be her final transfusion, took out the Foley catheter and monitored her that day and we moved to a regular hospital room about 24 hours after she got done with surgery.  We moved to the smallest possible room on the 8th floor in the neurological wing.  I seriously think it must have been because Julia was in a small crib rather than a full sized patient bed, you could NOT have fit one more thing in that room.  The nurse apologized for the state of the room (falling apart) as they are moving to the newer wing of the hospital in "a year or two so my supervisor doesn't want to spend any money here".  Um...K?!?  But the nurses were great and the care was what mattered so we didn't grumble (loudly anyways :)

We stayed there from Saturday night through Tuesday morning.  The day of transfer was rough as moving her caused her some discomfort and she was also starting to throw up from all the pain meds which were rough on her stomach since she hadn't eaten much yet.  On Sunday morning they took out her drain tubes, which were tubes with bulbs on the end providing suction to extract blood and other fluids from under her scalp.  Her swelling peaked that day and because she was more awake it bothered her more that she couldn't see out of her eyelids which had swelled shut.  That same afternoon they took off her head wrap and told us that would help her swelling diminish and to hold her upright to help as well.  Monday she started eating more regularly and could just barely peek out of a crack in her eyelid and Tuesday morning we were told we were headed home.  Our wonderful surgeon stopped by every day even though it was the weekend and was by multiple times a day most days along with visits from his fellow and residents.  He was very supportive and is who will follow Julia for years to come, starting with her post-op appointment next week.

I thought I'd share a few photos that show her days in the hospital.

Day one - Waiting in pre-op
She was her normal smiley self and charmed the nurses

Day One - After the Operation
(Her room in the PICU, huge and filled with natural light...and a lot of machinery)

Day Two - (Day After the Operation)

This was in the morning, they still had her sedated which was a blessing as the only time she woke up was to moan or cry.  She shared a nurse with one other patient next door and had a relatively uneventful stay.  She had a foley catheter, two IV's, two drains in her skull, an arterial line (for blood draws and transfusions), a blood pressure cuff, plus pulse-ox on her back and toe (to monitor her oxygen saturations in her kidneys and outer extremities).  Needless to say, no holding this day.  The second picture shows the, like, 70" screen they had showing her stats when you came into the room.  Thought my geeky friends might find the charts as much fun as I did in terms of quick visuals (Children's probably has the same consultants recommending visual management as my company). 

Day Three - Swelling at it's Peak

The first photo is from mid-morning when her drain tubes had been removed but her head dress was still on.  Swelling went up-up-up this day and because she had been weaned off the sedative she was quite aware of it.  The second photo shows the actual incision a few hours after they removed the head wrap.  They shaved just the strip that they needed to and the zig-zag pattern is to help her hair cover the incision as it grows back in.  The dot behind the zig zag is one of the drain holes.

Day Four - Peeking Out Through Tiny Slits

Day four we had lots of visitors which worked out as it was when she started to turn the corner in terms of coming back to herself.  The change from morning to evening was remarkable.  She was still on some pretty heavy duty narcotic pain medicine but if you timed it just right between sleepy from the meds and in pain from them wearing off, you could get some smiles and giggles out of her.  She now only had one IV line in and towards the end of the day we could even disconnect that in between her antibiotics which took about 40 minutes out of every 6 hours.  You can't see it in the photo below but she can actually just barely peak out of her swollen eyes and she was loving sitting up and playing some games.  They wanted her upright to help reduce the swelling but until this point we had just been holding her.

Day Five - Headed Home
Unbelievably she was headed home on day five.  We of course had to spend hours between discharge there and moving out and cleaning at the Ronald McDonald House.  Then had to stop at the pharmacy for some heavy duty pain meds and an oral antibiotic.  Couldn't coax a smile out of her in the carseat as we made our getaway but luckily she slept on the way home.  Once we got home we continued all the same meds as in the hospital but she was much more herself, seeming to realize things were almost back to normal.  She was a bit afraid of being touched and especially of trying to feed her anything but I found her favorite food and let her make a mess for lunch which cheered her up. 

Day Seven - One Week Later
Miss Julia is nearly back to herself.  This was yesterday playing outside with her brother in the backyard.  She was having fun exploring the grass and playing with Jonah's hat.  AJ went back to work this Thursday and Friday and will be watching Julia Monday and Tuesday when I return to work.  She got her first bath on day six and we'll be returning for her post-op to see how everything is healing late next week.

Thank you to everyone for your thoughts, prayers and help throughout our ordeal!  Julia is a champ!!!

Surgery Friday

Way too much to do tonight and not enough time to do it so I'll keep it short.  We went in for pre-op today with anesthesia and they approved Julia for surgery.  She is healthy enough and we're very glad to be moving forward.  She had her blood drawn for the two units of blood that might be needed.  And she didn't shed one SINGLE tear.  Couldn't believe it, she just watched them fill four vials with not even a squeak.  Facts are she smiled at the lady doing it.

Surgery starts at 11am but they want us up at Children's by 9:30am.  That means we'll be leaving in about 36 hours!  They expect the surgery to be done by 5pm so we won't know much until late in the day.  Although the nurse provides updates hourly I don't anticipate it to be much more than whether things are going as expected or taking longer than anticipated.  When everything is complete we'll get an update by the surgeon and then get to see her briefly before they take her up to the pediatric intensive care unit and will need some time to settle her in and hand off her care to that team.  So I might not have much of an update until very late but will try to get one out by the time we head for bed.  AJ and I will be taking turns staying with her overnight with the other hopefully staying close by at the Ronald McDonald House.  Appreciate the prayers and support!

Is it any wonder we're crazy around here...

Received a letter in the mail today from Julia's cranio facial surgeon.  Excerpt below...

This [surgery] had in fact been scheduled but she acquired a significant upper respiratory infection that prevented us from proceeding with surgery on April 15th; the associated risks for proceeding with her surgery were too great.

She has been rescheduled for June 7th, and we are hopeful she will have made a full recovery by then. [...] Our understanding is that Julia is clinically improving, but remains at risk for reinfection.  It is particularly critical in her case that we are able to proceed with surgery, as long term outcomes are related to the age at the time of the procedure, and the window is closing in Julia's case.  It is therefore important that she remains healthy, and that all measures to insure not only her health but those of the children she encounters are maintained with the highest possible standards.

Yeah, that's why I'm crazy. 

New Surgery Date

Long overdue post, apologies.  As many of you already know, Julia's surgery has been rescheduled for June 7th.  The surgeons feel it's very important to hit this surgical date as it's towards the end of the ideal range to complete surgery, when her skull bones will regrow quickly to fill in the gaps created by the jigsaw puzzle they create.  So June 7th we'll try our hardest to hit!  Less than 6 weeks away from today.  Why is six weeks such an important milestone?  Because according to anesthesia, Julia must be 100% healthy for 6 weeks prior to surgery.  That's why our last surgical date was cancelled, a respiratory infection.  Since anesthesia doctors are the ones that make the rules on whether she's healthy enough to be put under for the surgery, this six weeks is pretty important.  And, not to be negative, but she hasn't managed it at any point in the last 4 months.  But, as we all know, May is a better time of year than March and April, so fingers crossed!  As of today, Julia is healthy.  All we have to do is keep her that way for the next 41 days, and then, oh yeah, the actual surgery and recovery time.

So we've changed a few things which should hopefully keep her healthy.  First, we're moving both of the kids to an in-home setting with a wonderful stay-at-home mom of a two year old.  Hopefully a break from all the daycare germs will make ALL our lives easier.  This winter was truly terrible for this household with a sickness in the house at least once a week from January through mid-April.  Jonah started coughing yesterday but I'm refusing to believe we're starting all over again after being healthy for the last week or so.

Second, we're planning to stay at home every weekend in May.  After all, less exposure to germs means less chance of getting sick in theory.  Five weekends shouldn't be so terrible, right?  Except there are some really TRULY wonderful things going on in May.  We had to regretfully RSVP no to two weddings, a birthday party, a baptism, Mother's Day, seeing my grandparents from Nevada who only come once a year, AJ's birthday, our annual Memorial Day party we host each year and I can't even remember what else.  May was chock full of fun!  Of course, if the weather holds we'll still have lots of fun just the four of us in our back yard.  If the weather doesn't cooperate we may go stir crazy but we'll make it.

Last, I'm taking out stock in Clorox.  Just kidding!!!  But I am liable to be pretty germ-a-phobic over the next month and a half, just bear with me OK?

So that's the deal, if you don't see us for a while know that we're not ignoring you and you're not the only one.  We're still having Jonah's small birthday party next weekend, then it's inside for 5 weeks prior to surgery.  T-minus 41 days, but who's counting?!?

Surgery Postponed and Neurosurgeon Appointment

Wish I had better news to share but with Julia's coughing/wheezing the anesthesia team wants to postpone surgery for 4-6 weeks.  They're the ones that make these sorts of calls so the cranio-facial and neuro surgeons are looking at new dates that coincide and they can find an open operating room.  I haven't heard back yet but when I do I'll let you know.  In the meantime, we need Julia to get well and stay well!  Not incredibly easy this time of year and in a daycare center.  One of the very few times I wish we had a stay at home parent in this household.  It's hard knowing we have to wait again and the weeks and weekends we cleared with work and friends/family that are helping has to be cancelled for a yet-to-be determined future date.  And then try try try to keep ALL sickness away as even a cold is apparently too much to operate with.  Well that should make for a fun 4th birthday party for big brother and spring for the rest of us.  But it will be OK in the end, Dr. Jensen assures us that the ultimate outcome will not be compromised by waiting.

The other appointment on Friday was to meet with the neuro surgeon, which we did (Dr. Lew) and he was very friendly and approachable.  He's been doing surgeries with Dr. Jensen for 8 years and I actually was fortunate enough to correspond by email with a former patient who's now 3 years old and beautiful.  Her name is Julia if you can believe it!  Dr. Jensen also attended our appointment with Dr. Lew as a way for us to get a chance to see him again before surgery, which we thought was very kind.

Dr. Lew answered nearly all the questions I had before even asking if we had any questions so I didn't really have too much to add.  He showed us Julia's CAT scan results and went through all the risk factors.  He said the brain itself looks normal and as this isn't actually 'brain surgery' and is rather 'skull surgery' he doesn't anticipate that changing.  He will be doing all the cutting as it's considered best practice, but Dr. Jensen (cranio surgeon) tells him where he wants the cuts and does all the rearranging/reshaping/putting back together.  Dr. Lew will stay in the hospital in case he's needed but his part is actually complete once the cutting is done.  He went through the surgery which I already knew and explained in my last post. 

One of my major questions he addressed right up front, risk factors.  He categorized the risks as major and minor.  Major being anything that is permanent and minor being things that can really suck at the time but are temporary.  The two major concerns are death and damage to her brain from a stroke.  He said he has never seen either result from this surgery.  They are not without risk, chances range from 1 in 50,000 to 1-2% but he does not anticipate it being an outcome here.  The worst minor outcome would be an infection, he said its a hellish week and could result in another surgery, but they always clear and to put it in perspective when she's 5 years old, the infection won't have changed anything.  He said they also haven't had this happen but admits it's likely they've been lucky so far and typical risk is somewhere around 5%.  Another 'minor' risk factor is that her head decides to take on this same shape again, in which case they'd have to either accept it (if it was cosmetic only and acceptable) or redo the whole surgery.  He said some kids just have a tendency towards this head shape, in which case doing the surgery gets them back into the center of the road where they're supposed to be but if they've got the steering wheel turned it's still going to slowly veer off from normal again.  A slightly more common minor risk factor would be the plates in her head not completely rejoining together and there being some "holes" that don't ever close up.  Dr. Jensen had told us he would monitor her until she's about 5 years old and if they are still larger than is safe, at that point he'd go in and patch them up.  He was hesitant to quote a number on this as he said it's improving each year and since they don't patch until the kids are significantly older the 5 year olds now rates are 90%+ of not needing this now with better than that in years to come. 

Other than that, all the questions were much less intense.  For instance, are they going to shave her head (yes, yes, I know my kiddos tend to be nearly bald anyways, but we want to hang on to what they have! :)  No, Dr. Jensen just shaves a small strip where he'll do the incision. For after-care, do we wash her hair or bathe her or....?  Yes, by the time we're home from the hospital we should be cleared for regular baths, etc.  How scared should I be to let her big brother 'play' with her or let her crawl around?  His answer was that we should be able to mostly let things get back to normal.  Of course I don't believe this and can't comprehend it right now, but it was comforting to hear.  And last question, will she have any restrictions later on in life... are you OK with her becoming a pro football player?  Yes, he says, fine by him.  I'm not OK with it as the mom, but I wanted to hear the neurosurgeon's view :)

Surgery Explained

The CT went as well as we expected this week.  Unfortunately a four month old doesn't understand not to move for 30-45 seconds, especially on an empty stomach since you can't feed them for 4 hours prior to the scan and in a strange machine with sandbags scrunching her head.  Julia tolerated the first one but we just couldn't get the second (last) one so she had to be sedated. They use a product called Brevital that only lasts about 10 minutes but it's getting the IV in in the first place that's the tough part.  Little baby veins are pretty tough to find, the rubber band tourniquet is not all that fun and holding still for a poke twice because they couldn't get the first one to work is doubly triply not fun.  But we all survived and hopefully she won't need another one for a few years when we can teach her the 'FREEZE' game.

We won't discuss the images themselves about a month and a half so we're going to pretty much try to forget all of this for a while.  The cranio facial doctor is reviewing them now but we don't have a meeting with him until surgery day so won't know what he thinks and we'll meet with the neurosurgeon for the first time April 5th.

As promised, here's some images I think will help explain a bit more what Julia will have done.  The two procedures she'll have done are CVR, which stands for Cranio Vault Reconstruction, and FOA, Front Orbital Advancement.  The CVR looks like this where they cut a slit from one ear over the top of the head to the other ear and then take off the front half of the skull, cut along the metopic ridge (the one right down the front of the forehead).  They take these two pieces and rotate them and piece them back together to smooth out the ridge and adjust for future growth.  Then they'll sew her back up and because they use a zip zag cut hopefully when her hair grows back you'll hardly be able to see it except for a little bit above her ears.  No rocking the shaved head look for Miss Julia but I think that's a small price to pay for a nice smooth forehead.

FOA is a little harder to explain but in a nutshell they are going to cut the entire bone underlying her eyebrows.  Julia has the one on the left below so her forehead is pointy, they'll make several cuts and flatten things out on top while building up the sides a bit.  It is both for cosmetic reasons and to protect her eyes (which is what a brow bone is for ultimately).  This is the one they will probably over correct because they can't really get the bone to grow at the same rate as a typical child so they give it a head start that she'll grow into.  These two surgeries are done at the same time and hopefully only once if all goes well. 

 

So that's it, easy peasy right?  If all goes perfectly she'll be in the pediatric ICU for 2-3 days and then a regular hospital room for another 2-3 days and we'll be home by the weekend.  Then she'll have to go in for a follow up check a week later and then just recover at home to let the plates get good and solid and the incision site to heal. She'll be checked annually by the cranio facial surgeon and there is always the possibility she'll need some touch up work or, heaven forbid, a whole new round of surgery, but the chances of that are pretty slim I'm told.  Cranio synostosis affects roughly 1 in 2,000 kids and touch up surgery needs to be redone in about 10% of cases with a full new surgery in about 1-2% of cases.  We're hopeful this will just be a distant memory in a few years.  Thanks for your love and support!  As always, if you have any questions, let me know.

Surgery Scheduled

Thought I'd send out an update on progress we've made over the last few weeks.  Things are getting scheduled and happening sooner than we thought.  We're excited to move forward though obviously scared as well.  If you remember my checklist from last month, progress looks like this:

1) Select a cranio-facial specialist...check!  Dr. Jensen at Children's is our cranio-facial surgeon
2) Select and meet with a neurosugeon...selected Dr. Lew as neurosurgeon and will meet with him April 5th
3) Get a CT scan in March...rescheduled for February 12th (that's this Tuesday!)
4) Review CT scan with cranio doctor...Dr. Jensen doesn't schedule another pre-op apt but will review the scans and meet with us the morning of her surgery, we'll review CT scan with neurosurgeon on April 5th.
5) Assuming all goes as it should and she grows as expected, surgery sometime between March and June (with possibly one more depending on the surgical approach and how she grows in the next few years)...and the BIG one...surgery scheduled for April 15th!!!

So that means assuming nothing changes, in less than 10 weeks Julia will be having surgery.  She has to be healthy at her pre-op apt and hold off on her 6 month vaccinations until after the surgery.  Other than that, all systems seem to be go.

Specific things to pray for in the upcoming weeks:
1) The CT scan goes well ~ they will probably need to sedate her so we can't feed her that morning but we can hope that she decides to hold still on her own by some miracle.  Otherwise just prayers that she tolerates it well and is back to her regular happy self shortly after the procedure.
2) The scan doesn't find anything unexpected.  We're hoping for a few technical things to be where the surgeon wants them but without going into a lot of details we'll just stick to the fact that the scans are what Dr. Jensen expects to see with no surprises.
3) Julia stays healthy healthy healthy in the coming months!  She has a cold right now and had a sinus infection last week so we need to get this household healthy and stay that way until after the surgery.  April is obviously better than February for cold/flu season but still lots of yuckiness going around.
4) That surgery itself goes smoothly, along with recovery!!!
5) All the other little details that don't matter nearly as much as the things above but still make life easier.  That our jobs are understanding of the fact that things will be hectic for a few months, that we find a way to piece together 6 weeks of in-home care for Julia so she stays safe post-surgery, that daycare is flexible and maybe just maybe works with us on being out that long without full pay the whole time (a girl can dream right?), that insurance isn't a pain in the rear end, etc, etc, etc.

After we're done with the CT scan I'll update and also give those that want it a bit more detail about the surgery itself.  Feel free to tune out if you're squeamish, I totally understand.

The Beginning

Welcome to the blog I really can't believe I'm writing.  Our beautiful baby girl has been diagnosed with metopic cranio synostosis.  What a mouthful!  And what a surprise!  Our older son Jonah had a completely different and unrelated tough start when he was born with Congenital Diaphragmatic Hernia and so when I was pregnant with Julia we did everything EXTRA right (since I was pretty sure we'd done everything right the first time).  I researched, was followed by a perinatologist, had a quadrillion ultrasounds, took progesterone shots and all the other things to ensure we knew what we were in for this time.  Everything looked good!  And we had a beautiful and healthy baby girl after an uneventful labor at our local hospital and came home the next day.  We talked about how different the experience had been and how much we loved being able to enjoy Julia with no worries.  She had a bit of a funny bump on her head and a ridge on her forehead but no problem we thought, we're sure it's just from the tough delivery and the pediatrician agreed.

Fast forward to her one month checkup and it was still there.  The pediatrician was now telling me that it was possible the sutures in her head had fused too soon, but we'd wait it out another month and see if it was really the problem.  I had a sinking feeling so decided to do a bit of research and make an appointment with a specialist 'just to be sure'.  After all, if the pediatrician was comfortable at her 2 month checkup, we could always cancel...right?  Nope, no dice.  So off to Children's Hospital we went.  I am all too familiar with the place after our months spent there with Jonah.  By this point I knew what the cranio-facial specialist would say so told my husband and the few people we told to get used to the idea, we were heading back on the medical rollercoaster.

Sure enough, it was confirmed in mid-Dec, just before Julia's 3 month birthday, the very last day of my maternity leave.  For those of you who don't know what it is (because I surely didn't a few months ago), metopic craniosynostosis is when the plates in the baby's skull fuse too early, specifically the two that form the seam from the baby's nose up to their soft spot.  Because the two bones are fused, they can't grow any more and a ridge forms.  If left alone, not only would it bother her cosmetically but it would not leave enough room for her brain to grow, leading to headaches, developmental problems or worse things like seizures.  So, next steps:
1) Select a cranio-facial specialist
2) Select and meet with a neurosugeon
3) Get a CT scan in March
4) Review CT scan with cranio doctor
5) Assuming all goes as it should and she grows as expected, surgery sometime between March and June (with possibly one more depending on the surgical approach and how she grows in the next few years)

The oversimplified explanation of the surgery is that they make an incision from one ear all the way over the top of her head to the other ear.  They use this as the access point to cut her skull where the suture has fused and also a few other places.  The reason they make other cuts is to try to head off future problems by jigsawing the skull together in a way that will hopefully make it so she doesn't need surgery again.  They 'overcorrect' a few areas where they anticipate she might not have enough room or her bones might grow too fast, making everything proportional.  

The thing to keep in mind here is that it is FIXABLE!  Children's Hospital has a way of reminding you there are degrees of 'bad' and being there always reminds me of this.  Julia does not have stage three cancer or an inoperable tumor, she has a heart that works and all her parts... the bones in her head are just not growing as expected and we need to fix it.  It will suck, no question about it, and there are risks, also no question.  But this is not necessarily the end of the world. We will go to the appointments, we will have surgery, we will pray a lot, and, God willing, years from now we will look back on this as a (relatively) short chapter in her life that is over.  Just as we do with Jonah, who has no idea how much fear we had in his early days. This is a bit longer process than Jonah's, who was all done with surgeries by 2 months old, Julia won't be able to say that quite so soon, but we pray it will go relatively smoothly and the end result is what matters.

We would greatly appreciate your prayers.  I'll try to keep this up-to-date as we learn more.  Feel free to ask any questions too, can't guarantee I'll know the answers but I'll be happy to try!