Today's post is brought to you by the words: worry and disbelief

I am not entirely sure where the post is going but I am feeling compelled to write. It's another dreary, rainy day in Atlanta and I guess I am a bit mopey. Maybe writing will turn my day around!

First off, I have been in touch with a fellow Atlanta mom whose 4 month old is having surgery today for sagittal. I feel for her. I know what she's going through and how scared and helpless she feels. If only she could skip the next few hours and days and have her perfect little baby back. A simple request to please keep Mason and the Robertsons in your prayers today and in the coming days as he heals!

As I sit and worry about fellow mom, I am in shock that 4 weeks have gone by since our little man was taken off to the OR. I am so grateful that we have made it to this point with no major setbacks. But since I am here worrying again, I have to admit that I am still scared for Finn. I know the hardest parts are behind us but I worry about the future and potential surgeries down the road. I am also scared of having another cranio baby or a baby with a different condition that is much more severe. I don't know if I can go through it again. Do all moms live in fear or is it just me?

This has been one of the most challenging years of my life. (That is hard to say when you lose a sibling at the age of 18.) Sometimes I feel like the hits just keep on coming. Then I try to remind myself that I am still extremely blessed. I have my health, a beautiful home, a loving husband and family who are more supportive than you can imagine, wonderful friends near and far, clothes on my back, presents under the tree. Why do we sometimes lose sight of all the good in our life and become so overwhelmed with the less than good?

Becoming an adult is not easy. Becoming a parent is not easy. Maintaining a life and a relationship when life hands you lemons is definitely not easy. But I pray that I've grown from these challenges. I know there have been circumstances in the past that have made me stronger as a person. I hope I can say the same for this year. I want to go into 2014 with a clear head and positive mind.

I am committed to ending 2013 on a high note! I am so glad that we end the year with Christmas. It is my absolute favorite time of year. I will definitely be one of those parents that goes all out. Brian has already had to remind me a few times that Finn won't really understand Christmas yet and we don't need to go overboard. I credit my mom for this personality trait. She continues to spoil us every Christmas!

It is hard to believe we are approaching our 2nd Christmas with Finn and 3rd with Cody! We have a tradition of taking Cody for photos with Santa at his vet's office each year. (Finn has yet to have a professional photo with Santa by the way. Priorities.)

Here is us last Saturday with Santa, AKA - Dr. Duffy (no relation), and Finn's new favorite toy, the toothbrush.

Sorry if that post was depressing or just plain all over the place. It was a little more personal than usual but c'est la vie. Blame the 10 straight days of rain.

Wishing you all a blessed Christmas, lots of love and laughter through the holidays, and a happy and healthy New Year!

Quick update - Neurosurgeon follow up

We are delighted to report that we just saw the neurosurgeon, Dr. Andrew Reisner, at CHOA and Finn is good to go for a year!! Hooray!! He will continue to see the plastic surgeon every 3-6 months to make sure things are aesthetically correct but no neuro visits until 2014! (I am kind of sad as I adore Dr. Reisner but if I really miss him, i'll write him a letter.)

We have to keep an eye on him physically and developmentally but will only need to bring him in if there is cause for concern. He will be monitored yearly until the age of 5 to make sure all of the "holes" in his skull are closing. We can examine him for holes simply by feeling his head. But they will most likely do a 2nd CT scan at 5 years to ensure everything is as should be.

We are so proud of our little warrior and couldn't have asked for a better Christmas gift.

(I need a nap.)

"Be thankful for the little struggles you go through today. Don't let them break you. 

Let them make you." -Everyday Life Lessons

Finn 2.0

Apologies for the lack of updates over the last couple of weeks! Things have not quieted down much since surgery! We were very lucky to have all of Finn's grandparents visit at different times over the last 3 weeks. It was nice to have family around to lend a helping hand. We also had a wonderful Thanksgiving with Mema. Quiet and relaxing was just what we needed after the crazy start to the month. This Thanksgiving, of course, we were most thankful for Finn's health and the expertise of his doctors. Unfortunately, his molars are coming in and he is in the process of dropping his morning nap, so he has been a bit off. But those things aside, he is great!!

No news has been good news in cranio world. Tomorrow will be 3 weeks post op. This morning we had our first post op appointmen with Dr. Williams the plastic surgeon. We had some minor concerns with the feel of his head but were hopeful that it was all normal. Dr. Williams assured us that all was as should be and we were quite relieved!

I never fully explained what they actually did to his skull and it is hard to explain without using his head as a model, but I will try! I am re posting the picture of the neurologists drawing of Finn's new head in case that helps my poor explanation.

Since there was a significant amount of bossing in Finn's forehead, the original plan was to remove a rectangular piece of his forehead, reshape it and then reattach it. Once in the OR, the team decided they could be less invasive and just removed a piece of his skull at the hairline and then essentially flattened it by pulling the bone back and reattaching it with dissolvable sutures.

(The black, shaded areas are were skull was removed.)

(You can see the two circles in this picture showing were the forehead was reattached.)

One of our biggest concerns, once the swelling went down, was that you could see the sutures protruding through his skin.

Exhibit A:

I am quite certain the doctors explained this to us in the hospital but I wasn't retaining all the details on the little sleep I was managing. Based on the very elaborate, 1D marker board drawing from Dr. Reisner, I envisioned the sutures higher up and not really at his temples. I was wrong.

Dr. Williams explained reexplained that it is a plastic suture that will dissolve in about a years time. It starts to absorb fluid which causes it to breakdown and it is naturally decomposed by the body. Swelling may occur when they begin to dissolve so that is something to be prepared for down the road. (Someone remind me to read this post when I start freaking out next November :)) But it is totally normal that we can see it now. Our own little Frankenstein!!

Our other concerns were two "bumps" on the top of his head in the back. They were clearly bone but it made Brian and I nervous as we didn't recall them being there last week. Again, they may just be presenting themselves as swelling goes down, or maybe we are just more comfortable rubbing his head again. No cause for concern though! The bumps or bone are really just an area of the skull that feels like it is bulging because there is no bone next to it. In the drawing above there lines that run down the side of his head, stemming from the black strips. These are what the doctors describe as barrel cuts. They are designed to allow the brain and skull to expand side to side. I describe it to people as an accordion expanding. (That's my fancy medical lingo.)

His incision is also looking better everyday. His stitches are dissolvable also. The more it heals, the less visible it becomes. We get asked a lot why, or how, they didn't shave is head. From the various support groups, I have learned that it is really the doctor's preference. Some claim there is less risk of infection if they shave the area where they will make the incision. Ours didn't seem to think so! I've heard of other parents that chose to shave the entire head so the hair will grow back in evenly. So far there has been no sign of infection or hair loss around the incision. When we left the hospital, we were instructed to wash his hair but rinse it with fresh tap water, as opposed to used bath water. Well I am still doing that! I never asked when I should stop and for something so easy that could potentially reduce infection risk, I don't see any reason to stop yet.

Last night Brian said to me, "I am so afraid that there is going to be something wrong since everything has gone so well." I couldn't have agreed more. We clearly have success guilt, if that is such a thing. Could it be too good to be true? I don't think so anymore. We have been through enough that we deserve this.

We are so happy to have a restored peace of mind (at least for now) and we ask for your continued prayers that Finn will remain on this path of surgical success! We have our follow up with the neurologist on Wednesday and I have no doubt he will have the same positive things to say. Our next appointment with Dr. Williams will be in late February at 6 months post op. We will see him again six months after that and then yearly going forward.

Our biggest risks/concerns going forward are that the bones will not fuse together. If that is the case, he will require a touch up surgery down the road. This is common in 15-20% of cranio patients. There is also the risk that the bones will fuse too soon again, or the craniosynostosis will reoccur. Dr. Williams said he is confident that Finn will not be at risk of this. One of the plus sides of his age is that even if the  plates fuse in 3 months time, he will already be 17 months old and that is an acceptable age. Some of the younger patients whose heads have a lot more growing to do would be more concerned.
(The ideal age for plates to fuse is 2 years.)

I am shifting all of my energy to Christmas! It is my favorite time of year. I loved having my mom here this weekend to help break out all of the decorations. We are both in full holiday mode now! I am looking forward to sharing the holidays with friends and family and toasting to a blessed year!

(Thanksgiving 2013)

"Things turn out best for people who make the best of the way things turn out."
John Wooden

Before and After

I just uploaded a bunch of pictures from the weekend and I started doing some side by sides. I was so amazed at how much his head has changed already that I couldn't wait to post. Finn will probably hate me one day for devoting an entire post to pictures of him in the bath tub but it really is the best time to note the changes. That crazy hair of his!!

Here are 3 different views:

HEAD ON

(Added width at the temples where skull pinched.)

AERIAL

(Much rounder. More width side to side and less length front to back.) 

SIDE PROFILE

(Less bulging in the forehead and rear skull.)

A picture is worth a thousand words! But it is still big and still perfect!

The Other Side

Well... we made it! I couldn't be happier to have the surgery behind us! I had the best intentions of blogging while sitting in the hospital but to be honest, I was struggling with what to say. I still am! It has been an emotional roller coaster. Thanks to the outpouring of love and support, Brian and I were  busy answering all of the amazing calls, texts, emails and Facebook media posts that by the end of the day I was too exhausted to write anything coherent.

It is absolutely necessary that I start by thanking EVERYONE who reached out to us and our families over the last week. I hope I've thanked you personally but if I haven't, I apologize! The amount of prayers directed our way undoubtedly carried us through the toughest hours. We are forever grateful to each of you for keeping Finn, his parents and his doctors in your thoughts.

In the efforts to help other cranio parents that are reading this, I feel I should give some detail about our experience. I have decided to leave out the nitty gritty details but if you are a fellow parent reading and want more information, I have timelines and notes galore so please feel free to contact me.

Overall we had a very positive experience. It's hard to say that this was a positive experience given the nature of the surgery and the fact that Finn is so little but it couldn't have gone any smoother. Obviously there were a lot risks involved and we cried... a lot... but the surgeons were very happy with the surgery itself and the outcome. We could not have been happier with the team of doctors who treated him. We are very fortunate to live in a major city with a Children's hospital.

The surgery was exactly 3 hours long. The neurosurgeon's part was first and took about an hour and 40 minutes and the plastic surgeon's about an hour and 20 minutes. I have to say those 3 hours went by a lot faster than I imagined they would. The OR nurse, Tammie, called us every hour, if not more, to check in and give us updates. That certainly helped. I will never forget Tammie's face. She was the sweetest woman and the one I handed Finn over to at the OR doors. She carried my little baby away! At about 8am they administered Versed which is used to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures. It is also given to produce amnesia so that the patient will not remember any discomfort or undesirable effects that may occur after a surgery or procedure. I am glad he didn't get upset when I handed him over but it almost made it harder. It was just a little weird seeing him so calm, with a stranger, in an unsettling environment. I guess I imagined something a little more dramatic in my head. Too much television :)

 Here is the neurologists drawing of what they did to Finn's skull. I am sure it makes perfect sense to you :)

When surgery was over Finn went to recovery and we received a call from his new nurse to say that he was doing great. Her name was Chris. Not Kris. Chris. It was one of those things that made us smile and sign that his angel and namesake was watching over him. It was about an hour until we could finally see him. That part felt longer than the 3 hour surgery. But we knew he was okay and starting to open his eyes so we could officially breathe the biggest sigh of relief. When they brought us into his room in the PICU he looked like a perfect angel. (He actually looked like toadstool from Mario Brothers with his head wrapped up but his face looked unharmed.) He was very groggy but melted our hearts when his eyes cracked open.

That first day was uneventful for the most part. He slept A LOT as the anesthesia wore off. It didn't take long for the swelling to set in though. By night time, both of his eyes had swelled and were black and blue. It was heartbreaking. His first nurse, Rachel, was a darling and stayed on top of his pain meds. His night nurse was not quite as sharp. She may have been my only complaint with CHOA over the 4 days but in her defense she was treating multiple patients versus Rachel who only had Finn.

Wednesday was definitely the hardest day. Lack of sleep was setting in for mommy. Finn was also continuing to swell and bruise but was also gaining conciousness which made it harder for him to sit still. I think that may be one of the downsides of the older kids of who have craniotomies. He was growing less fond of the wires surrounding him and by Wednesday night had successfully pulled out his IV line, his morphine line and his arterial line. Three nurses tried 4 times to start a new one with no luck. That was a long 45 minutes. But his nurse for that shift was a sweetheart and handled it so well. We had him switched to oral meds and I was able to administer them myself. It was chaotic and exhausting but it was also comforting. I knew my little guy was in there under all that swelling and gauze. He was being stubborn and confident and I loved it. He slept well on Wednesday night and by Thursday morning was like a new kid! Or his old self. Either way, he was alert and sitting up and even cracked a smile!! It was the best feeling in the world. 

The plastic surgeon's team came in that morning to remove his bandages. It was remarkable to see the difference!! By noon, exactly 48 hours post-op, he was walking around with both eyes open! I can't imagine how frustrating it must've been for him to not open his eyes for a whole day. He never seemed too bothered by it but that is just the kind of patient he was. I am in awe of him and his strength. He was such a trooper and I was one proud mommy.

(Don' t be alarmed by the enormous gliding Elmo balloon in the background. Thank you, Segars!!)

Thursday evening we were finally transfered out of the PICU. His nurse on the floor was in love and ready to take him home. He was eating a slice of pizza for dinner and trying his hardest to hit the Code Blue button on the wall beside his crib. Mr. Personality. It was truly remarkable. Aside from his outrageous hair do and black eye, you wouldn't know there was anything wrong with him. We are very grateful that they didn't shave off all of that hair. It hides the scar well!

We read so many accounts from cranio parents and they all talked about how resilient babies and kids are. I had hoped the same would hold true for Finn but you never know. I must say, he surpassed my wildest expectations!!

He (I) was very happy to be discharged early Friday morning and we went home to see his Cody man! And all of the flowers, toys, balloons and a fridge full of food. Mema kept the house (and Cody) in tip top shape. It was an emotional homecoming for me. We are so very blessed. 

I am happy to report that we all slept great last night. I was asleep on the couch shortly after 9:30pm. Finn only woke up once. I gave him some Tylenol, rocked him for a minute, kissed his sweet little head  and he was right back to sleep.

I have one last thing that I want to mention. The night before surgery we put Finn down around 7pm. We knew he would be up early on Tuesday so he went down a little earlier than normal. For those that don't know, Finn has been a great sleeper since day 1. (Mema can vouch for that.) He rarely wakes up in the middle of the night. But the night before surgery he did. Around 11pm he started screaming. I went in to comfort him and he was fine. He didn't have a fever and didn't appear uncomfortable. So I rocked him in his glider for a while. Not because I thought he needed it, but because I thought I did. I held his little forehead in my hand trying to remember what it felt like. I kissed the top of his head more times than I can remember. He just stayed there in my arms until I was ready to put him back in his crib. Eventually I did and he went right back to sleep. It was like he knew. (Or maybe it was his molars that we discovered this morning!?) But we'll never know. I am very pleased with the outcome of his surgery and do not regret making the decision to go ahead with it. But I'd be lying if I said I won't miss that old head. It was perfect just the way it was.

(After his first post-op bath!)

Thank you all again from the bottom of our hearts!

Kara, Brian & Finn

*I will try to post some before and after pictures when the swelling improves.

If you would like to see more pictures from the last week, please let me know and I will be happy to pass along the Shutterfly album. Some are hard to look at so I did not blast it. There are no pictures of the incision in the album but I do have them.

**Fellow parents - I have a detailed time line of the events and some tips for your hospital stay. Feel free to email me. karaduffy@gmail.com

*** Lastly, Cranio Care Bears is an amazing organization started by two cranio moms who sends care packages to kids in the hospital recovering from cranio surgery. They are always looking for donations!

http://craniocarebears.org/

"Can't see the line can ya, Russ?" - Clark W. Griswold Jr.

Perfect Timing

Apologies in advance if this post is a little all over the place... so am I.

Well, this time next week we'll be "on the other side" and hopefully celebrating a successful and complication free surgery. I mentioned we'd be busy but I am shocked at how quickly this surgery is approaching... Especially since it felt like it was going to be an eternity when they said "November 12th." But here we are, counting down the final days.

My normal response to stress is to clean, organize, etc... more so than normal. (The nesting phase of pregnancy was absolutely my favorite... Or maybe moving was?) So this week I have made a million to-do lists. In addition to unpacking from our weekend getaway and preparing for our visitors coming this weekend, I've scheduled the carpet cleaners to come in while Finn is in the hospital, cooked 2 batches of soup in the slow-cooker, organized all of his toys, and made a 3 page document about the house for my mom.  I am quite good at staying busy when I'd rather not think about the hard stuff. At least my coping mechanism results in a clean house, right?

Anyway, tomorrow morning is our pre-op appointment. Busy or not, things will begin to feel very real again as I drive up to the hospital. I am certain emotions will be heightened in the coming days. 

Exhibit A:

I am not a crier. (Just ask my husband or my sister.) But I just watched this video on Huffington Post and I was a mess.  I quickly sent it to all my mom friends... and my own mom... and mother in law.

Take a look:

The Video Every Mom Must Watch On Repeat Until She Gets It

Maybe it was the early morning with a sick baby, or just hormones, but it got me. And it was exactly what I needed today.

As nervous as I am about this procedure, I am 10 times more nervous about Finn coming home. (Moms - remember that feeling you had after your baby was born and you wanted to stay in the hospital forever?) That perfectionist side of me is terrified of doing something wrong. What if he bangs his head? What if he can't sleep? What if I get frustrated that he can't sleep? What if I mess up his pain meds or his incision gets infected? I am not a nurse! (Luckily Mema is and will be here the better part of November. Thank you, mom!) I am so afraid of seeing this little man hurting and not knowing how to help him.

Unfortunately, there is no manual for this type of thing. There is just our way of dealing with it. That video reminded me that I may never be perfect and I may mess up alot; but in the end, no one is more qualified to care for him Finn than Brian and me. Hopefully just being there for him will be medicine enough. 

A good laugh and a long sleep are the best cures in the doctor's book. ~ Irish Proverb

If you are too busy to laugh, you are too busy. ~ Proverb

First Stamp in the Passport!

We are home from our first international trip! My little world traveler, my mom (Mema) and I ventured across the pond this past weekend to Dublin to visit my twin sister. It was a great weekend and so special to be with my sister on her home turf. Contrary to popular belief, she is not the mayor of Dublin... yet. But when she decides to run she may have some competition. Finn was a hit. He met loads of people and toured the town with us all weekend. It was truly memorable!!

Unfortunately, our weekend almost ended on a bad note. Our first attempt at getting home was a rough one! Long story short, our plane had mechanical issues and we spent the majority of the day sitting on the airplane without ever going anywhere. Our 11:20am flight was eventually cancelled at 6:30pm (Shortly after Finn vomited. Hooray!) After almost 12 hours at the airport, I got some sense and checked us into the Four Seasons for the night! We even got upgraded because of our sob story. I am not ashamed to admit we spoiled ourselves and deserved every minute of it. Nothing against the fabulous hotel we stayed in all weekend but Aunt Catie lives just down the way a bit. So she came right over and we ordered room service and ate dinner in our pj's! We had to end the weekend on a high note and we did!

We were rebooked for the next day and eventually made it back to Atlanta at 10pm Tuesday night. (That's 3am Dublin time.) Finn went right to sleep and woke up at 7am (ATLANTA TIME!)  It was a flawless as it could have been but a long day of travel none-the-less.

If this trip taught me anything, aside from how much patience I truly have, it is that Finn is a total trooper. Aside from making friends with an entire airplane of people during a 9 hour delay, he rolled with all the punches we were throwing him. He slept in strollers, pack n plays, hotel cribs, Aunt Catie's bed, taxis, airplane seats, airplane floors, my lap, etc. He adjusted to time changes like no one I've ever seen before. He ate what we gave him and drank whatever milk was available. He has always been a great traveler but this was a new level. 

I still can't help but think that this surgery will rock his world but I am definitely optimistic. I know he will be uncomfortable and scared at times. I worry he'll be in pain and won't sleep. But then I remember he's Super Finn and he's going to be okay.

"Treat a child as though he already is the person he's capable of becoming." - Haim Ginott

In Good Hands

A friend of my dad's is connected to Children's Healthcare of Atlanta and was nice enough to do some background work on our doctor. We were very reassured by his report that Dr. Reisner is top-notch. We already felt very comfortable with him but a little positive reinforcement never hurts. He also forwarded an article that I wanted to share.

Sunday Conversation with…   Dr. Andrew Reisner 

Patients start a brain injury fund in doctor’s name

Posted: 12:00 a.m. Saturday, May 25, 2013

Doctors save lives every day but it’s not every day that patients and their families say thank you by starting a fund in their name. That’s the case with The Andrew Reisner, M.D. Traumatic Brain Injury Fund in honor of the Children’s Healthcare of Atlanta neurosurgeon who has been treating kids for 25 years. The fund was initiated by the parents of Jessica Jones who was 14 years old when Dr. Reisner operated after Jones fell headfirst and was given little chance of survival. Today Jones is a medical student at Case Western Reserve University in Ohio.

More than $60,000 has been donated to the fund since December. The money will support clinical, research and training activities, as well as programs to prevent traumatic brain injuries. “I am incredibly honored and fortunate that my path crossed those with incredibly generous and gracious patients and their families,” said Dr. Reisner, medical director of Children’s neuro-trauma and concussion programs. “I recognize that there is a responsibility to make sure the fund is used appropriately for research, prevention and community needs.”

Q: Are kids’ brains different from adults?

A: Everything about children is different — their physiology, their brain development, the types of diseases they have, their potential to recover.

Q: Are kids more likely to recover from brain injuries than adults?

A: In the first two years of life, the brain undergoes tremendous development, both anatomical and physiological changes. During those years, the brain is particularly vulnerable to disease or injuries. On the other hand, with a child, another part of the brain can take over a function that was done by the injured part. That is pretty unique to children.

Q: What is a traumatic brain injury?

A: The term covers such a wide spectrum, from concussions to severe head injuries. The most common cause of severe brain injuries are motor vehicle accidents. The common causes of concussions are falls at home, sporting injuries, playground accidents and the like.

Q: Can many of these accidents be prevented?

A: If ever the expression “An ounce of prevention is better than a pound of cure” applies, it applies to head injuries. A

big focus of Children’s concussion and traumatic brain injury programs has been enhancing, encouraging and promoting preventative measures such as car seats, bike helmets, taking appropriate action if you think a concussion has occurred.

Q: Has enough attention been paid to preventing head injuries for children who play sports?

A: Georgia has passed the “Return to Play Act” that goes into effect Jan. 1. It mandates that if a child has sustained a concussion, the child is removed from play and returned only after being cleared by a health care provider familiar with managing children with head injuries. The act is long overdue and most welcome.

Q: The fund was started by patients you’ve helped. How many are you unable to help?

A: Unfortunately there are children who don’t survive. Further, there are children who survive but have debilitating and devastating effects that not only affect the child but their family and the community at large.

Q: Are brain injuries in kids something medicine knows a lot about?

A: We do know a significant amount about the underlying mechanism of head injuries but not everything. I have no doubt in the next five to 10 years, we will continue to make great strides in both the understanding and treatment of traumatic brain injuries.

If you would like to donate to the fund, you can do so online:

https://www.giving.choa.org/ReisnerTBIFund

Worrywart

It's so hard not to over think every little thing a baby does. Even if there is nothing "wrong" with them. I felt the same way when I was pregnant! Should I eat this, not drink that, workout less? It was constant. Well of course, now that we have Finn's diagnosis, I over think every moan and wimper.

According to his CT scan, he has no visible intracranial pressure. Phew. Actually, his form of synostosis is rarely associated with it. However, my biggest fear with waiting a month+ to operate was the possibility it could develop. This morning Finn was up at 6am crying. Usually he sleeps until 7 or 7:30am and most days he doesn't wake up upset. Of course my mind went crazy! Does he have a headache? Is his condition progressing? This on top of the normal worries - is he teething? tummy ache? bad dream? sick? fever? I know it could be any number of things but it's so hard no to think the worst.

A whole month of this is going to be challenging. From the people we've spoken to and the posts I've read on Facebook, the worries are all the same. Is at CT scan dangerous? How will he handle anesthesia? What will the scar look like? How will I clean it? How will he sleep? Will he be in a lot of pain? What if he's not the same adorable little kid after surgery? What if our next child has this?

Do parents ever stop worrying?! Mom? Dad? These are the things they don't write about in parenting books.

I tend to be very hard on myself. (At least that's what my therapist has told me.) I remember a while back, maybe 5 or 6 months ago, I called Brian into the bathroom while I was bathing Finn because it looked like Finn had a bump on the back of his head. We both convinced ourselves that it was normal and just a typical baby's head and that it just looked exaggerated because it was wet. I am trying very hard not to beat myself up over this but I wish I had taken that bump a little more seriously. When we went to see the plastic surgeon last month, he asked me to wet Finn's head so he could get a good luck at his skull shape. I remember the feeling in the pit of my stomach. Initially, I thought "Wow, he's good!" And then the guilt.

Many people have mentioned they never thought anything of Finn's head shape. I've posted about it before and it is evident from all of the pictures but he has A LOT of hair... and I think it's done a good job of masking the shape. The picture below was from last week and I think you can really see his condition here. At our second visit with the neurosurgeon, he asked us if we stare at his head now that we know something is wrong. Of course we do! And I was pretty convinced, for the first 24 hours after diagnosis, that his forehead was growing by the minute. But since they won't be shaving his head, hopefully those long locks with mask his scar too!

Moms - if you're reading... please, please go easy on yourselves! We are not doctors. We are overwhelmed. We can NOT do it all. But trust your gut. We are the voices for these little angels and if we don't speak up for them, who will!?

“What it's like to be a parent: It's one of the hardest things you'll ever do but in exchange it teaches you the meaning of unconditional love.” ― Nicholas Sparks

One Month To Go...

Today marks our 1 month countdown to surgery day. While my emotions have leveled out for the most part, it is still hard not to get upset when I look at my perfect little man.

We just had an amazing two days in Charlotte, NC for a dear friend's wedding. It was a beautiful setting and the most sincere example of true love. Finn was the ring bearer and, in my opinion, stole the show! (Sorry Alex and Emily!) He was a total champ all weekend. He was dragged (not literally) here and there and never missed a beat! I was a proud mama!

I drove the 3 1/2 hours home (hubby had a best man hangover) and it gave me a lot of time to reflect.

I thought a lot about people who have been through much harder things. They are wonderful examples to draw strength from. Our drive took us by Winder, GA. I thought a lot about a young boy named Tripp Halstead who is from Winder. Last fall, he suffered a traumatic brain injury when a tree branch fell on him outside of his daycare. (Oddly enough, the branch fell as a result of winds from Hurricane Sandy. Hard to believe Hurricane Sandy's path was that expansive.) Tripp was airlifted to Egleston Children's Hospital in Atlanta. Though Finn will be treated at a different children's hospital, I can't help but think of the Halstead family during our visits. We are so lucky to have two amazing children's hospitals in our backyard.

Tripp, a sweet young boy, and his parents have suffered so much. But their strength is an inspiration to me. Tripp's mom, Stacy, has been updating a Facebook page dedicated to him since the day of the accident. At first, it was extremely difficult to read, especially being a new mom. Now, when I read her posts, I put myself in her shoes and wonder how she handles these challenging times... far more challenging than what we will endure with Finn. I know I will think of Stacy many more times over the next month and especially on November 12th. I just hope I can be half as brave.

We are very fortunate to have amazing family and friends to support us. Even though our immediate families are in NY and CT, they have all offered to be here for us. We still have the greatest friends up north but are blessed with a whole new group of wonderful friends in Atlanta too. I want to thank all of you who have been there for us. Wine, nights out, talks, shoulders to cry on, wine. Y'all hold a special place in my heart for all the times you've made me smile.

Brian and I have both joined a Facebook support group - Cranio Kids. It is an amazing resource. Any questions I have have already been asked and answered by moms and dads who have been there, survived and are stronger people because of it! They use the term "the other side" when referring to babies/children that are post-op. I am already looking forward to that first post from the other side! Only one month to go.

On a very bright white note - here is a picture of Finn in all his ring bearer glory. As we were saying our goodbyes to the bride and groom, I told them that I will always remind Finn of the 1st wedding he was a part of. It was truly special. This one is going in the baby book. :)

“Tough times never last, but tough people do.”

Happy 1st Birthday, Sweet Boy!

It is amazing to me that a year has gone by since you entered this world. This day last year I was so happy I could finally hold you, see who you looked like and start to learn every little thing about you.
You were my 8lb 12oz "little" blessing even though the whole hospital staff talked about how big you were.  You were the perfect angel then and you still are now.

Even though it has flown by, it is amazing to think about all the things you've done in 12 short months. You've mastered the art of walking, clapping and waving. You have 8 adorable little teeth that make your smile as sweet as can be. You've been on an airplane 16 times and will take your first international flight in 2 weeks! You were a rockstar sleeper right out of the gate... I'll stop bragging :)

You will likely not remember a single day of your first year of life! (I will do my best to fill you in later.) But I guess that's a good thing. Watching you scream and cry through x-rays and CT scans is not something even I want to remember. So luckily you won't have to. I hope the same for your surgery.
I can still remember being wheeled away to the OR when I got my tonsils and adnoids taken out in 2nd grade. I think about how my parents must've felt that day and I well up. I am my mom now... it's my turn... and it's scary! My birthday wish for you is that this will be the hardest thing you ever have to endure in your life.

Today, I will do my best to not think about the surgery or the pain you'll experience. Instead, I will focus on all the wonderful moments from the last 365 days. You have made me smile every single one of them.

Finn's Diagnosis

Thank you for visiting our page!

I know a lot of blogs are used to keep the masses updated and I hope this blog will do that. But I also hope it provides more. In the 2 short weeks since we've received Finn's diagnosis, I have found myself scouring the web for other moms like me. Moms who have been there and can shed some light on what is still to come. Now that I have come to terms with Finn's diagnosis, I truly believe my newest role in life is to help others dealing with the same fears and emotions that we are.

Rather than write out the whole story, here is a timeline of Finn's journey thus far:

• July 11, 2013 - 9 month well visit. Pediatrician expresses concern about Finn's head size.
• Wednesday, September 18th - Cranial Ultrasound and 1st appointment with neurologist at Children's Healthcare of Atlanta - Scottish Rite (*Yes we waited 2.5 months for an appointment. Immediately sent back to hospital for X-rays. Neurologist said his head size was normal but was suspicious of sagittal synostosis because his head SHAPE was worrisome.
• Thursday, September 19th - X-rays confirmed neurologists suspicion and he wants to send us to see the plastic surgeon that he works with for another opinion.
• Thursday, September 26th - Meeting with plastic surgeon who advises us to operate.
• Friday, September 27th - Follow up call with neurologist to discuss plastic surgeon's thoughts. All parties agreed a CT scan is the next step.
• Tuesday, October 1st - CT scan at CHOA and appointment with neurologist immediately following. Scans show Finn has a total fusion of the sagittal suture.

There were many days of worrying and waiting in between but those are the facts. 

Speaking of facts. We've learned a lot in the last few weeks. More than I ever thought I would know about the human skull. To help those reading that aren't going through this, here is some information on craniosynostosis:

What is Craniosynostosis?

At birth the skull is made up of multiple bones held together by seams called sutures. The sutures should remain open as long as the brain continues to grow, enabling the skull to expand and properly accommodate the brain's growth. Craniosynostosis is a congenital anomaly caused by early closure of one or more of these sutures, resulting in limited or distorted head grown. 

Sagittal synostosis (Finn's type)

This is the most common type of craniosynostosis. The sagittal suture is located between the anterior fontanelle and the posterior fontanelle. Early closure of this suture results in scaphocephaly, which literally means "boat shaped head." Infants will often have a protruding forehead, an elongated head, and a bony protuberance at the back of the skull.

Below is a side by side of a normal skull (left) and Finn's CT scan showing the fused suture (right.)

The next images show his protruding forehead and elongated head shape. Two of the characteristics mentioned above. 

We are fortunate that Finn has not suffered developmentally thus far. Evidence does not show any signs of intercranial pressure (ICP) either. However our fear, as well as the doctors', is the chance that pressure could develop as his brain continues to grow. At 1 year, his brain has only reached 60% of its maximum size. With 40% more growth to do, we want to make sure there is room for it!

This brings us to present day! Juggling the neurologist's schedule and the plastic surgeon's, as well as ours and the hospitals is no easy feat. We were hoping to have the surgery done before the end of the month (Even if that meant trick or treating in the hospital) but no such luck. Surgery is scheduled for Tuesday, November 12th at 8:30am. Finn will have what the cranio world calls a CVR (cranial vault remodeling.) Do you lose your stomach when you read that like I did? He will be in the PICU for one night followed by 2 or 3 additional days in the hospital.  They will not be shaving his head. I am happy about this since it will help mask the scar. But I would be lying if I said I wasn't excited to see him with a buzz cut for a change. He's had a wildly full head of hair since birth (just like his mommy!) 

Every doctor and parent that we have spoken to mentions how quickly these little fighters bounce back after surgery. We are all certain Finn will do the same. I believe them when they say it's usually harder on the parents! It will be a long 5 weeks of waiting but luckily we are busy with weddings, birthdays and a trip to Ireland to pass the time. Our neurologist assured us that there is no risk in waiting to perform the procedure and we are comforted in knowing that waiting only means he will get both of their undivided attention.

Thank you again for reading and joining us in this scary, life changing adventure. 

“Every heartache will fade away just like every storm runs out of rain.”