7 weeks post-op!

Happy New Year everyone! Hope you all had a safe and enjoyable holiday. We had a great trip up north and spent lots of quality time with family and friends.

Finn rounded out the year with his 22nd flight in 12 months. He is still the best little traveler. He is 15 months old today! (Not sure how that happened.) I can't believe all he has accomplished in such a short period of time. We have returned to a totally normal sleep schedule. Actually, he is sleeping later than he used to even before surgery. I don't know if it's a growth spurt, the holidays, his new sound machine or just his New Years resolution but we are not complaining.

I just wanted to quickly mention that since Finn was diagnosed with cranio, I have learned of 5 other people in my life that have had a family member or friend touched by cranio. It is crazy to me that I had never even heard of it and now I am learning of other people who have gone through the same thing. One of the reasons I started this blog was to help others going through this. I was fortunate enough to be called upon for advice when a high school friend's nephew was diagnosed with the same cranio as Finn. She put me in touch with the parents and we had a wonderful phone conversation. I hope the phone call was as valuable as they said it was. I am so grateful to be able to share our story and help calm the fears of other.

There really isn't much to report in regards to his head but I thought I would give a quick update anyway.

His scab was basically entirely gone 4-5 weeks after surgery. The incision looks really good. It is still pink but it is barely noticeable through his hair. 99% of the stitches have dissolved. (Did I ever mention how many stitches he had?? The doctor said somewhere between 100-200. That'll be a cool story when he is older!) You can see the scar when his hair is wet and I combed along the incision so you can really see it in the pictures below. I am sure it will only continue to improve over time.

(Click on the photos below to enlarge.)

 

Here is his profile shot for his 

silhouettes we had made. (1 month post op.)

Reminder - this is what it looked like before.

Recently, on the cranio Facebook support page, someone posted pictures of their son's post-op CT scan images. If you recall, we did't have one done and we were left with a drawing of what was done to Finn's skull. Well these CT images are crazy (and may be hard to look at) but I felt that I should share because it is what I imagine Finn's skull to look like. Their son also has sagittal and the doctor also made barrel staves on his skull. 

The image below is an aerial shot looking at the top of the patient's head.

               (Think of it as a blooming onion.)

(Rendering of Finn's skull.)

You'll notice in both surgeries they did not just cut along the fused suture. According to research, the chances of a suture fusing prematurely a second time are higher if they cut a long the fused suture line.

I have officially gotten used to his new head and I am slowly starting to forget what it used to look like. 

Some days I look at pictures and I think there isn't much change but I try to remember that it's really about what's going on under all that crazy hair that matters. 

One last before and after for good measure.

After

Before

Wishing you all an extra healthy 2014!

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