A Friend for Peter

A few weeks ago, Abby and Isaac had their last soccer games of the season. As we sat there watching Isaac's game, I looked across the field at the parents of the opposing team and saw a lady holding a baby wearing a helmet that looked just like Peter's.

"She and I are part of the same club!" I thought.

At about that same time, the woman saw me and brought her baby over. Her son is just six weeks younger than Peter and just like Peter, he was diagnosed with craniosynostosis early enough to have surgery from Dr. Siddiqi, And for the next several months they both get to wear styling helmets.

Peter in red.

I see kids wearing helmets all the time these days - but very few are wearing them because of craniosynostosis. It really did feel like we were part of a club as we sat there and talked. The best part of meeting this family, was watching Peter and this little boy interact. I don't know if Peter recognized him as part of the same "tribe" but they did seem to have a special connection. They wrestled like bear cubs and then gave each other loves as they played together. It was so funny to see.

Yes, we are an elite group, the Craniosynostosis Club - but there are worse clubs to be part of.

Why is that little boy wearing a helmet?

We are commonly asked questions such as:

How has Peter adapted to his helmet? or Does it seem to bother him? Does the helmet slow him down?
Well, watch this video and then you tell me.



The reason Peter wears a helmet is because he is a Tiny Human Battering Ram!
No crib can contain him.
Ever forget your keys and lock yourself out of the house? Ever want to get into the garage but don't feel like going to the car to get the opener? Ever struggled with a Pinata? Ever feel like there are obstacles between you and what you really want?
Then the Tiny Human Battering Ram (THBR) is right for you. With the specially fitted helmet, most small children can be trained to perform simple, focused, high powered blunt force tasks.
Simply apply the helmet, then place the child in a sparcely padded wooden cage-like environment each night, turn the lights out and ask them kindly to spend the next 6-8 hours there. In no time they will be rearing back and ramming away with precision and stamina. (For even better results it is recommended to have a three year old sibling placed 5 feet away, tempting the child with the freedom that only a twin bed can provide. With the clear, stylish model, you can even watch the perspiration build up. Results are guaranteed with THBR.
Caution:
-standard cribs will no longer be suitable for Tiny Human Battering Ram.
-never allow small unhelmeted children near Tiny Human Battering Ram.
-do not place Tiny Human Battering Ram near glass objects.
-always wear regulation shin-guards when walking near Tiny Human Battering Ram.
-do not taunt Tiny Human Battering Ram!

Update on Peter

It was two months ago today that Peter had his surgery and he is doing really well. Last week we took him in for a scan of his head, and his head has gotten 4 millmeters shorter (from front to back) and 8 millimeters wider. His head is still longer and skinnier than it should be, but the helmet seems to be doing its job.

We are loving this little boy right now. He is such a happy, sweet baby. Over the past few weeks he has learned to laugh, has mastered the "fake cough" and he loves his feet. The other day I went in and found him asleep holding on to both his feet. It was darling.

Peter will celebrate his four-month birthday on Monday. On the one hand, it has gone by so quickly, but at the same time, we can't remember what our family was like before his arrival. It seems like he's been here forever. We are so grateful for this healthy, sweet baby.

Here are few pictures to show his progress. The "before" pictures were taken a few days before surgery, and the "after" pictures were taken today. We are really happy with the progress he is making and are so grateful for good doctors - and helmet makers.

Profile:

Top of Head:

Fall's "Hottest" Accessory

It has been about ten days since Peter got his first helmet and I can definitely say it's been much harder on me than it has on him.

The first few days were the worst. After ten minutes of wearing it, Peter's poor little head would be sweating so much that the helmet would steam up like one of those terrariums that were so popular back in the '70s. It looked so uncomfortable that I would take the helmet off, clean it out and put it back on his head - only for it to steam up again ten minutes later. Luckily his head has acclimated to the helmet and the steaming issue seems to have decreased significantly.

Peter has seemed pretty unfazed by the new addition to his wardrobe. He has such a peaceful spirit, he just smiles and coos constantly to anyone who talks to him and isn't the least bit bothered by the hardware he's sporting. He has lost almost all his hair since getting the helmet. He is totally bald except for the old man hair that grows from ear to ear, just above his neck. Somehow though, he makes that look work for him.

Now that I am used to the helmet, I find it quite endearing. He really looks pretty cute in it and the helmet seems to accentuate his eyes and cheeks. Given the choice, I wouldn't make him wear it, but I think we're actually going to survive "The Year of the Helmet." Heck, we already have 10 days down - just 355 more to go!

Really, does it get any sweeter than this?

Home at Last

We were only gone for two days, but it sure feels good to be home - and we are so glad to have Peter back home with us.

On Friday we took Peter to the hospital for his surgery. His surgery was at 2:00pm, and although he hadn't eaten since 7:45am, he was smiling and cooing as we waited for the surgery to begin. It made it all the more difficult to turn him over to the anesthesiologist when it was finally his time. It nearly tore my heart out to watch them carry Peter away.

His surgery lasted about two hours. Finally we were told we could go see him in the PICU. I wasn't sure what to expect, but was pleasantly surprised at how good he looked. He still had a breathing tube in, and his head and face were a little puffy, but considering what he had just been through, I was pretty happy. He spent the first night in the ICU, and was then transferred to the floor on Saturday. We spent Saturday night in the hospital and finally got to come home from the hospital early this morning.

The doctors and nurses were so phenomenal. We feel so lucky to be living so close to a great hospital where they perform this surgery. Peter is doing great and we are grateful that he is home and doing so well. He won't get his helmet for another week to ten days so until then, we are enjoying his soft fuzzy head.

Thank you to everyone who has thought of us and offered prayers on Peter's behalf. Thank you for the text messages, voice messages and notes that have been sent. We have felt blessed and sustained by the love and support of family and so many dear friends. We'll keep you posted on how he's doing.

Peter - the day before the surgery

Waiting for surgery to begin

Shortly after surgery in the ICU

Peter, 30 hours post-op. (Notice the steri-strips on the top of his head. That's the extent of the bandaging after surgery. It kind of takes away from the drama.)

A Soft Spot For Peter

Tomorrow at noon Peter will be having a large portion of his skull removed. Tonight we are just enjoying rubbing his sweet little head (albeit long and narrow). We are running our fingers over the longitudinal ridge where he sagittal suture is completely fused. With that suture fused his skull can not properly grow laterally and he would continue to bulge in the forehead and posterior (occiput). We noticed within moments of his birth that he had no fontanelles or soft spots and his head was not the round specimen of our previous nogginoids (or children, sorry for the medical speak).

Fortunately we caught it early and are able to have the surgery done by a plastic surgeon and neurosurgeon at Primary Children's tomorrow at just under 2 months of age. I was shocked at how big a piece of bone they will remove. I figured they'd just cut it but of course it would just refuse, I mean re-fuse, not refuse, you know what I mean. They actually cut the skull with scissors, not a bone saw and the piece of bone removed is about 3 inches by 6 inches. Can't comprehend it? Draw it on paper and then stare at it for a minute. He actually does need that like he needs a hole in his head. Fortunately he will be in a helmet for the next year. It seems like the helmet would be necessary just to protect his vulnerable brain with that size of soft spot but the helmet is really just for molding and ensuring the proper head shape. I don't know whoever said long and skinny wasn't proper.

We are glad about the helmet with three siblings around. He won't get it for one week post-op while it is being made in Florida, where helmets and gatorade were invented. Elizabeth is nervous about that week and said, "Andrew, what are we going to do without the helmet, he gets kicked in the head everyday by one of these kids." Abby replied defensively "nuh-uh mom, not yesterday!"

As the we have finally reached surgery eve, it is really hitting Elizabeth. She took him to get pre-op blood work done today, our first child to get anything more than a heel stick, and broke into helpless sobs. Any parent can relate to the feeling of helplessness watching their infant get poked and prodded, with no clue where it is coming from or why. It made her so sad to think that he has no idea what he is facing tomorrow.

Well we all love little Peter and are so happy to have him in our family. With each new child, during the early newborn period I feel that the focus of most of my energy seems to be to the next youngest child as Elizabeth cares intimately for the new baby. There are only so many of Peter's needs I can meet, yet for Henry or Isaac I can very aptly respond to an impatient demand for "chocolate milk in a sippy cup!" I acknowledge that I occasionally have to be reminded by Elizabeth to "come in here and listen to this boy coo, and look at him smile." Peter definitely responds very specifically to Elizabeth and she could look into his eyes all day. For each of us, Me, Elizabeth, Abby, Isaac and Henry we are changed from two months ago, our life is different, our hearts are a little different, we have a new element in our life and a new irreplaceable dimension to our family. We all have a soft spot for little Peter.

Craniosynostosis

I know it is common for newborns to have weird shaped heads, but my babies don't. One of the things I have always done well is give birth to babies with round heads. However, shortly after Peter was born, Andrew and I noticed that he had a strangely shaped head. As the mom, I assumed that his head would look normal within a few days, but Andrew, as a doctor, thought there might be something really awry with his head.

Well, as it turns out, Andew was right. After a CT scan of his head at 2 1/2 weeks, it was determined that he has craniosynostosis. What this means is that Peter's sagittal suture in his skull, prematurely fused and his head is unable to grow normally. For now all it means is that his head is long and skinny - but if left untreated it could cause cranial pressure and developemental problems. The only treatment for craniosynostosis is surgery.



Yesterday Andrew and I took Peter to see Dr. Siddiqi, a pediatric plastic surgeon at Primary Children's Medical Center. We also met with Dr. Kestle, a pediatric neurosurgeon. We discussed treatment options for Peter and they both recommended an endoscopic surgery on his cranium. This is a less invasive surgery than the traditional method - although it will still require general anesthesia, a possible blood transfusion and a 1 - 2 day stay in the ICU and hospital. In addtion, Peter will have to wear a helmet for the next year. In the surgery they will remove a 3-inch by 6-inch piece of Peter's cranium - leaving a huge soft spot - which will allow for the brain to grow normally.

So, our little Peter is scheduled for surgery on August 24th - just five days shy of his 2-month birthday. When I think about it too much, it makes me a little crazy to know our tiny baby has to go through surgery. However, I know this is for the best and I have total confidence in the doctors who will be treating him.

If you are interested in learning more about craniosynostosis, or about the procedure he will be having, you can look here. Trust me, this is a much kinder and gentler surgery than what he would have had to go through if we hadn't caught it this early.

Abby is very concerned for her little brother and in her prayer last night she said, "Please bless the doctors won't hurt Peter. Well, I know they'll hurt him, but please bless they won't hurt him too much." To that we all say, "Amen!"