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.
Tuesday, April 30, 2013
Sunday, April 28, 2013
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?!?
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?!?
Sunday, April 7, 2013
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 :)
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 :)
Monday, February 18, 2013
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.
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.
Monday, February 11, 2013
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.
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.
Friday, January 25, 2013
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!
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!
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