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.”