And That's Why They Make the Big Bucks

We had Pierscen's plastic and neurosurgeon appointments about a week and a half ago. Both appointments were at Primary's with the first one starting at 9 am. I was nervous about trying to get up there in commuter traffic and possible bad weather, but thankfully we experienced neither and made it to Primary's by 8:30. My mother-in-law was good enough to come with me again as Ryan had to work a double for his co-worker.


I had never been to Primary's before. It wasn't what I excepted - but that's not a bad thing. I always envisioned it being set off on it's own - kind of a beacon on a hill. But it's not. It is very much tucked in among lots of other buildings. So much so that I almost missed it. I mean - the signs were all there - but I still kept looking for the building I had imagined. (I blame the picture on the website. It's a great shot, but it does make it look like it is all alone with nothing around it. Very deceiving. AND - the entrance is on the "side" of the building. Well, obviously it's actually the front, but the building faces perpendicular to the street so it looks like the side. The front faces the parking structure, so there is no recognizable feature from the picture visible from the street.) But I must say, probably like every other person who first visits Primary's - the inside is amazing. From the moment you walk through the door you can tell it's all about the children. Their motto - "The Child First and Always" is perfect. Every wall and room is painted and themed. It was a very inviting place. It put me at ease - and I am the adult! I can't help but wonder how much better it would make people feel if we did the same thing for all hospitals - one room painted with mountains and bears, another painted with seagulls and boat docks. I think children and adults alike would fair far better with distractions like that.


Luckily for us, there were no appointments before us (or they weren't there) so they just took us straight back. (Of course we still ended up sitting in the room for a while... but that's the unwritten rule when going to see the doctor.) When the doctor came in (this was the plastic surgeon) he immediately almost seemed... what's the word... surprised? He looked at Pierscen, then back at his chart. Up at Pierscen, then back at his chart. All while making some little chit chat conversation. "How old is he now?" I knew right away this was the question that was drawing the confusion. "10 weeks," I replied. He kind of grunted and looked at his papers. My impression of this was that he must be confused why we were meeting again so soon. I had wondered that myself when the scheduler called with the appointment. I thought he would want this appointment closer to surgery, but what do I know? He proceeded to measure and feel his head. He looked at his chart and more to himself said, "So he is scheduled for surgery May 3rd. That puts him at..."

"4 months and 1 week," I supplied.

"4 months? Ooo... that is really too young. We like them to be closer to 6 months. Why was it scheduled this early? Did you ask them to schedule it that early for a reason?"

"No," I stated. "That's just the date they gave me when they called."

"My girl scheduled that?"

"Yes."

He grunted again with clear disapproval.


Ellen chimed in, "She said it had something to do with your schedule and the neurosurgeon's schedule and that being the best time for the surgery."

"We do surgery together all the time. It shouldn't be difficult to find another time. I would feel far more comfortable if we were to push it back a month."

I felt my stomach drop. Honestly, I shouldn't have been surprised. I shouldn't have been upset. During our initial visit with the doctor when Mr. P was only 2 weeks old, he told us the surgery would be around 6 months. So when they called and said May 3rd - making him barely 4 months, I was surprised, but thrilled. So to hear that he wanted to move it back - again, it wasn't surprising, but it was deflating none the less. But I didn't respond yet.

"How is he doing with his weight? What percentile is he?" he asked.

"He's in the 30's. He was 11 1/2 pounds at 2 month appointment last week."


Again, a bit of a grunt in response. (I promise the doctor is not a cave man. I think just several elements of this appointment came as a surprise to him and this was his way of digesting the information.) "We really like to see them closer to 15+ pounds when we do this surgery. Although we do this surgery all the time, this is still a very substantial surgery. We find that they do far better if they have more reserves. They will loose a decent amount of blood, and the more they weigh, the more reserves they have, and the easier it is on them. So again, for that reason, I would like to move it back a month."

I still did not respond. I wasn't going to argue. I wasn't going to say no. But I still felt like there was a frog clinging on for dear life in my throat, and I couldn't bring a smile to my face to say, "Okay." Silly. I know. Especially because the surgeon would NEVER want to push it back if it wasn't for the safety and well being of the child. So why my stubborn silence? I don't know. Instead I asked him about how they were going to fix his eye. This was something Ryan specifically asked me to ask about.


The doctor then explained that a baby's bones are still pliable. Not super soft, but certainly more mold-able than their adult counterparts. The eye socket is made up of lots of smaller sutures, like the plates of the skull. They bend the eye socket to make it smaller, but in so doing, they may break some of the sutures. If done too soon, they may not heal correctly. Strangely enough - this process is also better if done around 6 months. Again... we need to push it back. I also asked about his nose. The doctor said he was surprised that I noticed it since most mothers don't. The misalignment is pretty slight - but it is there. He said they don't actually have to do anything with it. As soon as they fix the forehead, the nose will actually fix itself. That's kind of nice.

I also asked him about what they would do if he developed a flat spot. (Our pediatrician had said that it was pretty much inevitable that he would develop one - as it was part of the craniosynostosis with him favoring one side - looking to the right. This seemed really strange to me, so I thought I would bring it up.) Our doctor seemed surprised, and confused by this telling. He said flat spots had nothing to do with craniosynostosis and immediately reached out for Pierscen to feel his head and see if he was developing one - which at least so far, he is not. He said that yes - if he developed one, it would definitely impact the surgery. They wouldn't be able to operate! Reason being, if they did the surgery, and then went ahead and put him in a helmet for the flat spot, that it would put too much pressure on the front part of the skull and undo everything they had just done. So they would have to push off surgery. Great! That's just what I wanted to hear. We were super awesome about tummy time in the beginning, but have been really bad lately. You better believe I am a tummy time enthusiast now! That and I carry him around more - but I don't want that to be a habit either. I just don't want him to get a flat spot!


It was so nice to finally have an explanation for why 6 months was the goal. Even in the initial meeting he never told us why 6 months was the magical marker. But it all made perfect sense. And any loving mother would never want to go against all of that just for the sake of doing it early. But I still cried a little when I finally nodded "consent" to moving it back. Like I had an option! Haha. However, the whole time I kept thinking - "He knows that moving it back a month only puts him at 5 months, right?" I varied between wanting to ask him if he was sure one month was far enough, and not wanting to say anything because I don't want it pushed back any farther than necessary. But I figure - he is a smart man. He is a plastic surgeon after all. I am sure he is well aware that only makes him 5 months. Besides, this surgery is usually done anywhere between 4-8 months. So 5 months and 1 week should be just fine. The new date for surgery is June 4th.

We headed back out to the waiting room to wait for our neurosurgeon apt at 10:15. Luckily for us they took us back almost as soon as we got back in the waiting room - much earlier than our 10:15 apt. Unfortunately, most of the time we saved by being called back early was lost in waiting in the room instead. Typical. Haha.


The attending physician came in first. At least that's what I think he said he was. Is that the same thing as the resident? I think so... Anyway, Pierscen had fallen asleep, but woke up as we handed him over to be examined. Thankfully he was a wonderful little guy and didn't fuss. The doctor felt his head and looked him over from several different angels. "Oh yeah. This guy has classic Right Coronal Stynosis." And it's true. I remember when we first met with the plastic surgeon and he showed us pictures of his type of stynosis I thought the same thing. "Left forehead bulge - check. Right forehead recessed - check. Right eye socket elongated - check. Nose tweaked - check." We talked with him for a few minutes while waiting for our surgeon to come in. I remembered reading from some other blogs that often the child will have to have a transfusion, and that the doctors recommended family members go and get matched for blood type to see if they could donate. So I asked our doc about it. He said he wasn't sure about that, and that we could ask the neurosurgeon when he came in, but that the likelihood of him needing a transfusion was pretty low - like 20-25%.


Shortly thereafter our neurosurgeon came in and introduced himself. I liked him immediately. Just very kind and personable. Up to this point I really didn't know what the neurosurgeons job was. Ever since we were told by the neurosurgeon office that it was actually plastics that was doing it I have been kind of confused. So I was really looking forward to meeting with him.

He started off by explaining what craniosynostosis was and then said, "Now you could do nothing about it, but I wouldn't recommend that." He went on to explain that many moms research the condition and see that it can cause "retardation" if the brain is not allowed to grow correctly. He explained that this isn't what we usually think in those terms and though it us rare, it is more like they are a total regular human being that didn't quite reach their potential... meaning that instead of being handicapped like we imagine, you would never know the difference except that maybe otherwise they could have been a genius. I heard him ask the other doc about the CT scan we had done the day after he was born and ask if the brain looked okay. The other doc answered in the affirmative. So I asked if any of that could change and if we would need a more up to date CT scan. He said no, that in fact, P's skull was compensating beautifully (although that's what gives him the lopsided look) and that that wasn't a concern. He said that as a matter of fact, from now until the surgery, the more "unusual" he looks, the better because that means that the rest of his skull is compensating. But that "unusual" look is also the prime reason to operate. Cosmetic? Yes. But much more important than just looks.


Now the risks. Is there a chance of stroke or something like that? Unfortunately yes. But the odds are so miniscule it's not worth stressing over. "Something like 1 in 1000" was his example. I had to keep myself from laughing. The odds of P having this condition are 1 in 2000. Those aren't very good odds!!! I didn't say anything because I knew those numbers were a figure of speech and that it really wasn't that likely. In any other situation 1 in 1000 would sound like a huge impossibility. I am not stressed about that at all. I honestly just found it humorous.

Now for the crazy part: How it's all done. The plastic surgeon makes the incision and peels back the skin. Then the neurosurgeon begins to cut into the skull. There is a leathery layer that separates the brain from the skull and in infants this layer clings rather tightly to the skull. The neurosurgeon may need to cut into this layer a tiny bit in order to help separate them, but he will sew it back together and the brain should never really be exposed. Then he will remove the front 2/3 of the skull. This, he explained, is really the most dangerous part. Once the skull is removed he will come out and give us a half-time report, if you will. You know, working in the medical field, I love this kind of stuff. It is so incredibly amazing. It takes a lot to make me queasy. And even though I find this stuff in particular absolutely incredible, visualizing my son like that... with most of his skull removed... my stomach definitely did a back flip. I am still not worried about the surgery - but just that picture was about enough to make me want to reach out and steady myself. And I was sitting down! It's just that it's my boy. My perfect, blue eyed, blonde hair, infectious smile, little boy.


Anyway, from there the plastic surgeon takes over and begins the process of remolding the bones. This is what takes up most of the time, and almost all of this is done on the table. I don't know what I imagine before this. I don't know how I thought they could remold it if the skull was still attached, but I hadn't thought of it that way. Pretty interesting. Then, once everything is shaped they way they want it, the put it back on and reconnect everything with the dissolvable plates and screws. On average they say it takes about six hours. Hospital stay is 3-5 days. He just has to be eating, pooping, and off meds. Post op care is pretty minimal. Just restrictions on giving him a bath. That is still insane to me. But I am so grateful kids bounce back so quickly.


I asked the neurosurgeon about the transfusion issue in relation to whether we should be asking family to go get tested for possible matches. He answer was surprising to me. He said that they are actually moving away from direct relation transfusions for a couple of different reason. He said there is a study that shows that it's actually better not to use a direct relative. The findings were so surprising to the medical world (and to myself) that they had to do the study again. The results were the same. The main two reasons they are moving away from relative donation is because 1. They were finding that standards were being compromised. For instance, mom might match 16/19 things they look for and a stranger might match 19/19, but they would say, "But it's mom. It must be better." 2. Direct relatives are not as honest on the questionnaires. They found that most people were more likely to be completely forthcoming if it is for a stranger than if it is for a relative because they don't want to lower their chance of being able to donate to a family member. So with that in mind, it totally made sense why they are saying no to family donations. Of course they still encourage family to donate to help the general blood bank, but just not for the family member themselves.


Lastly, I mentioned that they had moved his surgery back a month and that he would now be 5 months. I was kind of trying to ask if that was late enough, but he responded that as a neurosurgeon they never want to do the surgery before 5 months because it is such a major ordeal. He said the chance of transfusion is more like 80%. Slight difference than 20-25% but I didn't say anything. He reiterated what the plastic surgeon said - which was basically to beef him up. There isn't a whole lot I can do about that. He is 2.5 months. I can't feed him solids yet. So I guess we just pray that he puts on enough weight. They won't not operate because of that or anything, but it would certainly help!


My mother-in-law and I both left feeling really good about things. It finally made more sense why they wanted to wait and it was wonderful to get more of the big picture. I did call the plastic surgeon again the other day to see if we needed another apt before surgery and to learn about post op apts. No pre-surgery apt needed. But post op... wow. 4-6 weeks, 3 months, 6 months, and then yearly. I guess we will be seeing a lot more of the surgeon in the future!

And as a final note, all of these pictures were taken the day of the appointment. I started off with my camera phone and moved to the real camera. By the end, P wasn't being as smiley as he was to begin with, and instead insisted on looking to the right like he usually does. This time, however, I tried to follow his gaze.


Can you see what he is looking at? It's the picture of Christ with the children. There in no doubt in my mind that he knows who He is. And I am so thankful to know that He will be watching over my little boy through this whole process.