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.”