Happy Cranio-versary!

Happy Cranio-versary to our little Leah! 

Who could tell, looking at this picture, that she had surgery one year ago today!

Our helmet graduate!

We are just back from an appointment with Ramona at the Hanger Clinic in Syracuse. She confirmed what Dr. Taylor said last week: Leah is done with the helmet! She hasn't been wearing it much over the last week, so we are very happy to hear that we don't have to put her back in it.

Ramona took a scan of Leah's head again today, and showed me the before and after in her office of the scans. She's working on a final report of Leah's progress and will give it to us in about a month, so I don't have photos to show at this point of her head shape, but these that we took at home capture the change in Leah's skull shape and face since the surgery and after helmet therapy:

Ramona was really pleased with Leah's outcome, and I did say that we were VERY careful to follow the helmet directions to the letter. She wore that thing for almost exactly 23 hours per day for EVERY day that we were doing the helmet therapy. We missed that one 24 hour period where she had the terrible rash on her forehead, but otherwise we adhered to the plan exactly as they asked us to. Leah never really minded it, though we can tell that she's happy to have it off. She is still having some trouble navigating the world with a head that hurts when it is bumped, but that should only last a few more days! Of course, we are starting to realize, every time she bumps her head, that there are definite advantages to having a helmet on your child when she is learning to walk!

P.S. It turns out that those helmets are like greenhouses on the inside. All that heat and humidity did wonders for Leah's hair, as evidenced by the photos above!

A Thumbs Up from the Surgeon

We're back from a long day at CHOP to see Dr. Taylor (over nine hours in the car for a 19 minute appointment, but who is counting?) for one last post-op check. He seems very impressed with the progress she has made, and says that her results are remarkable. He seems especially happy with the way the surgeries addresses the asymmetry of her face, and says that her eyes are pretty much perfectly even. Of course, he uses different language to say that but I get the gist.

Going into the appointment, I had two things I wanted him to address, aside from the overall success of the surgery. Though the sutures were supposed to be dissolvable, it seems that Leah still has one large stitch at the very top of her head, possibly at the end of the thread where the knot was tied. I asked him if it was possible and he said very unlikely, but then I showed him and he seemed surprised. He and two of his residents examined it, and decided to remove it with tweezers and forceps. They all gathered around Leah and started to tug on the incision, and I assumed she would really lose it and that would be the end of her cooperation for this appointment. In reality, she took it all in stride, and just sat there looking moderately surprised that everyone was focused on the top of her head. She's actually quite good with pain management at this point (she shrugs off shots at the doctor's office with barely a raised eyebrow, as if to say, "I've had major skull surgery, so you don't really think that little needle is going to phase me, do you?"). After a moment of tugging, the stitch was out.

The other issue was that she seems to have a pocket of fluid on the right side of her head, just under the skin, in exactly the spot where the distractor sat against her skull. I have had a few folks look at it who have some kind of medical training, and they have guessed a variety of things, but most agreed it was just fluid that would go away. So, I was expecting Dr. Taylor to confirm that, and when he said it was actually a defect in the skull, I was quite surprised. I managed to get over the shock of hearing that there was a large hole in her skull enough to ask, "So, what am I feeling under her skin then?" He matter-of-factly replied, "Her brain." David and I exchanged glances, but he quickly reminded us that there's a hard covering over her brain, and that in all the cases in which kids have had these skull defects, there have been no cases of associated traumas. He also said that we shouldn't let it affect her activity in the least, and that we should treat her just like any other kid. We had removed her helmet for the appointment, and I was holding it in my hand, and as he said this I admit to thinking, "Well, she will just have to wear this helmet then for the rest of her life!"

On the helmet, he did say that he thinks it has done its work and that we should take it off. Since it's summer (and it was over 95 degrees in Philly that day!) it's hard for a kid to wear a full foam helmet, so he said to take it off. I asked about the flat spot over her right eye, and he said he didn't think the helmet would address that anyway. We still have an appointment set with Ramona, the Hanger technician, next week, so I will get confirmation from her before I make it official, but at least we will take it off during the day for now.

So, in the end, Dr. Taylor said we should come back in a year to check in, but that otherwise things are looking great!

24 hour helmet vacation

Well, we hit a small snag in the helmet process. Leah has a horrible rash on her forehead that we can't cure with OTC creams. We have been working on it for a few days, but it's right in the area of her forehead that is being held back by the helmet. Since the weather has warmed up and she's getting a little sweaty during the days, the sweat mixes with the rash and creates a whole lot of ugly! Our pediatrician gave us some prescription cream to try, and our orthotic tech said to try taking the helmet off for 24 hours to give the rash some time to breathe. We'll see if that works, and if Leah can sleep without the helmet for the first time in over three months!

Happy Birthday Leah!

What harm does a little chocolate cake do to a helmet after all?

More time with the helmet

We visited Leah's orthotic technician today in Syracuse, and she said that while Leah is making lots of progress, we have a bit more to do. We hoped that she would be done with the helmet by the end of May, but it looks like it may be a few more weeks. The good news is that it is making a big difference, and aside from a flat spot above her right eyebrow, she's looking pretty round overall. So, we'll keep going...

Fun with the Helmet!

We're getting lots of mileage out of the blank canvas that is the Hanger helmet! She usually sports some kind of flower, but we couldn't pass up the opportunity to make some Easter bunny ears!

Two weeks in

So far so good on the helmet. Tonight when we gave her a bath we could see a big difference in the symmetry of her forehead. The photo below shows that she's getting rounder by the day!

We have a helmet!

At the end of the week last week, Dr. Taylor helped us out with our insurance company by talking to one of their medical review people. After a conversation with him, the insurance folks reversed their decision and decided to cover the orthotic device. Dr. Taylor got in touch with me by email, sending me a message that said simply, "Helmet approved." It was the greatest, shortest message I think I have ever received by email!

So, we headed back to Syracuse today in some seriously inclement weather to meet with Ramona, the orthotics tech at Hanger. She put the freshly manufactured helmet on Leah's head and drew several circles around the edges, then took it off and disappeared down the hall to carve it up a bit for a better fit. She came back and repeated the process a few times, and each time she put the helmet on Leah's head, Leah reacted mostly with surprise rather than displeasure. After Ramona was happy with the fit, she had me put the helmet on Leah's head, and while it's not difficult, the stiffness of the helmet and the importance of lining it up correctly on her head make it a bit tricky. There's an arrow in the middle that points to the center of the helmet and that arrow is supposed to line up with Leah's nose, so that helps a bit in making sure it's lined up correctly. Here are a few photos:

(I know this above photo makes it look like we have the helmet on crooked, 

but rest assured that's a camera angle thing...)

For the next few days, we follow a schedule of putting it on and taking it off to get her used to the helmet. We start with one hour on and one hour off today, then two on and one off tomorrow. On Friday, she will wear it for four hours then take a one hour break, then wear it for four more, though she won't wear it for naps or while she sleeps at night. On Saturday, it's six hours including naps, and on Sunday she sleeps with it on at night for the first time. By the time we go back to see Ramona next Wednesday, she will have it on for 23 hours a day, and we will just remove it in the evening to give her a bath and to clean the helmet.

After a two-plus hour drive home on ridiculously snowy and slippery roads from Syracuse, we put Leah down for a nap, and then put the helmet on her for an hour this evening. She tolerated it well, though got grouchy at the end. When we took it off we were both surprised at how sweaty she was, so we gave her a bath while we followed the directions on cleaning the helmet. If she's going to be that sweaty each time she wears it, we are going to have to give her a lot of extra water, I guess, and break out those short-sleeved spring clothes a bit earlier than planned.

Our insurance covers the device for 90 days. Hopefully, that's as long as she will need it. If we need to have her in the helmet longer, we will have to revisit the whole coverage issue again, and a new helmet will need to be made, but we aren't going to even think about that right now. Like every step in this whole process, we're just going to keep taking it one day at a time!

A Hold on the Helmet

Today was the day we were supposed to get Leah's helmet, but a denial by the insurance company has put a stop to those plans. Hopefully, it's just a delay. Apparently, their policy is to cover the helmet only in cases of severe non-synostotic plagiocephaly. That means that Leah's cranial vault asymmetry would need to be greater than 12 mm, or her asymmetry index would need to be greater than or equal to 8.75%. I know her asymmetry is 6mm, and while I am not sure of her index, I assume it's less than 8.75% at this point as well. Our cranial orthotic tech has suggested we involve Dr. Taylor, so we are asking him to schedule a "peer to peer" discussion with the folks at Blue Cross. Perhaps if he can convince them that the helmet is the last step in the whole procedure and is therefore necessary, they will reverse their decision.

In the meantime, we have an appointment set for next Wednesday, and will just plan to pay cash for the helmet (which...yikes..is not cheap!), then hope that the insurance company will still come around and the helmet company can reimburse us for some of the cost.

Here's another before and after photo of Leah that I took today (the before is on the left, the one taken this morning is on the right). Hopefully we will get the helmet and will have an even better series of before and after shots to post in about three months!

First helmet appointment

We are just back from our first appointment with the Hanger office in Syracuse, which is where Leah will be fitted for her cranial orthotic helmet. The appointment was a very easy one (no blood draws!) in which Ramona, the technician, put a little stocking bonnet on her head and scanned it in order to make a 3D image of her head shape to send to the company. They will use the 3D image to manufacture a helmet for her which will put pressure on the parts of her forehead that are "bossed," or sticking out too far and will in turn let the other side of her forehead catch up. The helmet usually takes about two weeks to come in, but because Leah is older than most babies being fitted for a helmet, Ramona felt there was no time to waste and is having the helmet rushed a bit. There's only so much skull shaping that can happen after a baby is about a year old, so if we are going to change the shape of her skull, we have to do it quickly. So we have another appointment scheduled for Friday, March 7 in which we will pick up her helmet and receive instructions on its use.

One week post op

Only a week has gone by since our last surgery, and Leah is recovering remarkably quickly. She is still taking a dose of pain medication in the morning, and a half-dose at bedtime, and that medication is making her a bit sleepy, but otherwise she is showing no effects at all of the surgery. Her appetite was a little slow to return, but on Sunday afternoon it came back all at once, and she polished off several cubes of sweet potato, beef, apples, and even some pureed chickpeas.

Her incision seems to be healing much more quickly this time as well. I'm not sure if it's because there was less swelling with this surgery so her body can focus on healing the incision, or if it just looks better because her whole head was not shaved, but it's hard to believe from this photo below that the incision was made only a week ago!

Surgery gunk

Now that she took off her bandages, we decided to clean her up and get off all that adhesive from surgery. Most of it came off in the bath, and some of it will require some serious baby oil to remove. And though she still has some swelling, especially between her eyes, it's nice to see a round head again without the distractor in the way!

Bandages off

Remember when we said Dr. Taylor told us to keep the bandages on until Saturday, because it was sterile underneath, and that the moisture would promote healing of the incision? Apparently, Leah didn't hear him say that, because when I went into her room in the middle of the night last night, she was lying in her crib with her head on one end, and the bandages in a heap on the other end!

I had a look at them to see if I could reassemble them, but since the point of them was that they were sterile, I didn't see the point in trying to get them back on. So, it looks like we are going to have to revert to the wound care we did during the last surgery for the next few days. The upside of that is that it may help her balance to not have all that gauze on her head, and of course that we finally get to see her face without the big lump on the right hand side!

Morning Update

Leah did well overnight. She was up two times but that's pretty normal for her (unfortunately for us...), and she went back to sleep easily both times. This morning her right eye is swollen shut, but since it's dark outside it didn't seem to bother her yet. She is having an issue with that big bandage today, and keeps pulling on it so it's slowly moving forward. I am going to have to find a way to pull it back this morning to keep it from covering her eyes, though I'm nervous to do so since I don't know exactly where the incision is and I want to make sure I'm not pulling on it, or that I'm exposing a part of it when I adjust the bandage. The bow on top seems to be especially enticing to her so it's possible that I may just take that off (though it's pretty cute...) and see if she will leave the rest of it alone.

Yesterday before we left the hospital and as we were waiting for our discharge papers, I called a few places to look into cranial orthotics, or a positioning helmet. Dr. Taylor says that while her forehead looks fine, she still has "bossing" on the left side, which means that part of her head sticks out further than the right. She also has plagiocephaly in the back of her head, and while part of that is from the fused suture, part of it may also be from the distractor, which prevented her from turning her head and caused her to lay with the back of her head flat against her crib. He said it's very mild, while the bossing on her forehead is moderate, so he wrote us a prescription for a helmet. They do helmeting therapy at CHOP, but the therapy requires visits every 2-3 weeks for adjustments. So, he suggested we find a place closer to home to have this done so we don't have to drive to Philadelphia all the time. He said that helmet therapy wasn't terribly technical and that he thought she would have excellent results no matter where we went, and that orthotics companies are very common (his actual words were, "There's one on every corner in Philly.") He's kind of right, because I saw at least two different Hanger offices as we drove out of town. Of course, that proves not to be the case in our area, so after some web searching and some assistance from the Blue Cross people, I found one place in Syracuse that has a cranial orthotics tech who works only with kids. I called, and we made an appointment for the end of February. That will give Leah's incision a chance to heal before her first helmet fitting.

We will learn more about the helmet therapy when we see the folks at the Hanger place, but Dr. Taylor said that she will probably be in the helmet for about three months. He also said they will insist she wears the helmet for 23 hours a day (taking it off only for baths and if she is going to eat especially messy foods, which is pretty much any food for Leah...) but that he thinks that is less important so we should use our judgement on that. I know that most kids get used to the helmets quickly, but that sometimes they have issues with helmets when it's very hot outside. Fortunately we won't have that problem in Upstate New York in the spring! We are sure that she will have no problems with the helmet once she gets used to it, and compared to the surgeries she has just endured, a helmet will be no problem. Plus, it's not a terrible thing for a baby learning to walk to have a hard-shell helmet on her head at all times!

Here's a picture of what a cranial helmet looks like. John is hoping we can get a plain one so he can decorate it to look like a hockey helmet!

Made it home!

Leah slept the whole 5 hours home, and even felt well enough when we got back for a brief reunion with all her toys. We are going to start spacing out her pain medication a bit so are trying to keep her occupied before her next dose at bedtime. She is having a little trouble with balance after the surgery, most likely from the swelling, but I think she thinks it's the bandage and she keeps trying to pull it off. It has to stay on until Saturday so that is going to be a bit of a challenge. We expect her to have a little more swelling overnight, but we are so relieved that it looks like her eyes will stay opened this time.

On the road

After talking with Dr. Taylor this morning about our next steps, we made some follow up phone calls from the hospital and waited for our discharge papers. The nurse gave Leah another dose of oxycodone and we got her into pajamas and her car seat. We checked out of the hospital and hit the road, hoping to make it home before the next winter storm does.

Going home!

I'm outta here!

Good morning!

Leah is having a good morning so far. She's awake and playing in her crib, and I am trying to keep her focused on her toys rather than all the medical equipment around her but that's proving to be difficult. She's still in pain so they have just given her some medicine which should help.

She had a rough night last night and wasn't able to sleep for more than 60 minutes at a stretch. Part of it was the swelling, part of it was the unfamiliar surroundings and the constant alarms. We are expecting Dr. Taylor and minute and hoping he will tell us all looks good and we can go home.

Up and playing

After a series of small naps, Leah is sitting up and playing with some toys. She is managing a few smiles too. Her bonnet is a little disconcerting to her, as is the bow on top, while she isn't really bothering the IV for some reason. The glowing red pulse gauge on her thumb is also going unnoticed somehow.

All is well

Leah is still sleeping, though she wakes up periodically when they check her blood pressure. She gives us a confused stare then, assured that we are still sitting next to her, closes her eyes again. She is showing small signs of swelling just under her eyes, but from what Dr. Taylor said just after surgery it won't be as severe as it was last time. We also learned that the red area under each eye is not from broken blood vessels but from the tape they use to keep her eyes closed during surgery (which I didn't know they did). When they removed the tape, the skin ripped a little under each eye. The nurse offered to have someone from plastics talk to us about it but they said it should heal in a day or so and wasn't cause for concern.

In her room

They just moved us to Leah's room (#13, Colgate friends!) and she's sort of sleeping. She didn't love the ride from the OR but once we got here and took some of the blankets underneath her out, and gave her her soft bear, she kind of settled in and looked more comfortable. Hopefully she will take a long nap while her anesthesia wears off this afternoon.

Awake already

They aren't sending her to the ICU so they brought us back to the postoperative area to see her. She was awake when we got to her, and a nurse was holding her. She was crying a little but was hoarse from the breathing tube so it was quiet. She has her little bonnet bandages on again (with a bow on top) so other than some broken blood vessels under her eyes and in her cheeks, and the beginning of some swelling, she looks great. We can't see the incision or the site of the distractor yet so she looks pretty much like normal. And she doesn't have that dreaded central line in this time so we can move her around and hold her much more easily already.

Surgery is done!

We just saw Dr. Taylor who said everything went very well. He said the new bone grew in beautifully, and in fact it grew so well that it grew over the distractor screws and he had to chip it away to get the screws out. It took a bit longer to get out than he thought but he said that it all looked great and she should have no problems with pressure.

He gave us some preliminary information about the helmet she will need but suggested we get that taken care of closer to home, and it will be a few weeks before her incision heals enough for that next step.

Update

O ur family nurse came out to say all is going well so far, and Leah is asleep and with Dr. Taylor. Otherwise, she had no news to report. She told us we would go to the ICU next, while Dr. Taylor said she definitely would not go to the ICU so we have no idea which it is. We will find out soon...

The waiting room

I'm sitting in the surgery waiting room pretending to read the New Yorker but really watching the door for any emerging nurse...just like all the other parents in the room. When a nurse comes out everyone's head snaps up and we all watch her while she calls out names to give updates.

In between updates, all the parents are watching each other. I noticed that one way "veteran" parents recognize each other is through the coffee machine. It's an automated thing along the lines of a Keurig but much more complicated, with little valve bags that go into a tiny slot in the front of the machine that's hard to see. When a parent walks in and deftly slips a bag into the machine without a pause, it's clear that person has been through this before. It's a strange skill to have, and not really one that anyone wants...

In surgery

Our nurse just took Leah back into the OR. She was very sleepy and starting to look hungry but went with the nurse with no problem. She's just a few weeks too young to have any stranger anxiety yet which made the handoff much easier. The nurse actually said that they don't give babies any medicine before surgery until they are nine months old, but after that they have to give them a little sedation in order to get them away from their parents without too many tears!

We are headed to a different waiting room where we will check in, have some coffee and wait for updates.

Still waiting

Dr. Taylor has been in to see us and has explained the procedure again. It's always great to talk to him because he makes each procedure seem like it's very simple and no cause at all for concern...the equivalent of having her toenail clipped. He said the surgery will take only about 30 minutes, but the nurses said that doesn't count the time it takes to get her to sleep before the procedure or to wake her up afterwards. We are signing consents for blood transfusions but he said that may also be unnecessary this time. So overall it sounds like this morning will be faster and easier than it was last time.

Ready to roll!

All went well with check in and her initial measurements. We are just waiting for our surgeons now, and surgery will start.

Distractor Removal Surgery is Monday

We finished our pre-op appointments in Philadelphia, which went very quickly now that we are seasoned patient parents at CHOP. After getting up at 4:30 am and driving 4+ hours in the car, we spent less than 45 minutes at CHOP then drove right back home again. It was a lot of driving, and seemed just a little unnecessary since the main purpose of the visit was to ensure that we understood the pre-op instructions they mailed to us and to take samples of Leah's blood to match her blood type for the transfusion, which they really already know from the last surgery. But it seemed like it would cause more issues, and more opportunity for confusion and error, if we tried to do some of that closer to home and send results there, so we just popped her in her car seat, filled up our travel mugs of coffee and headed down the road. Also, David agreed to a stop at IKEA on the way home, and people who know me well understand the significance of that! So, we jumped the last hurdle before her next surgery, and I got the cutest little MYNDIG plates out of the deal as well...

We didn't learn too much more about Monday's surgery than we knew before. By deciphering the medical codes on her stat sheet, we know this is a distractor removal that involves the Plastics team. The sheet did label the surgery "elective" which seems a little odd to me since we don't really feel like we are "choosing" anything...other than not having Leah live with a metal rod attached to her skull! We know our neurosurgeon will also be there to take charge of the part of the surgery that exposes Leah's skull. Essentially this is the same surgery that was performed in October, but since it's a removal rather than a placement it is less time consuming. The nurse said that the operating room was booked for 85 minutes for Leah's surgery, which is less than half the time it was booked for her first surgery, so that makes us very happy. That means that the incision may be a little bit shorter than it was the last time as well, and rather than going from ear to ear, it may stop short a few inches above her left ear. If that's the case, then the amount of tissue disturbed is less as well, and that means her swelling will be less, and possibly her left eye will not swell completely shut during the recovery. I'm hoping that's the case, because I think it will be much easier to soothe her if she can see at least a little bit while she's in the hospital.

As we left the appointment the nurse gave us instructions to call if Leah gets sick over the weekend because that will mean the surgery will be cancelled. I asked what her definition of "sick" is in this case, and it seems she's counting anything beyond a slightly stuffy nose--a fever, a cough, stuffiness, etc. So, we are going to really have to watch her this weekend. Of course, this morning Leah woke up at 5:30 am and seemed very upset, which is unlike her. She seemed tired but somehow in pain...very much like a baby who is just getting sick. I was able to get her back to sleep and she is still sleeping now, so perhaps it was just a moment of grouchiness and she will wake up her usual smiley self. If not, there's nothing we can really do about this anyway, so there's no point in worrying!

Our surgery is scheduled for 6:00 am on Monday, so we are leaving our other kids in the hands of our lovely friends, the Belangers and Bernards, and heading to Philly on Sunday evening. We'll miss watching the Superbowl with our little Manning fan at home, but we will be happy to take the next step towards having these surgeries behind us at last!

Successful travels

We are just back from a week in Paris, and Leah came with us. We had no issues with her with the travel, though her distractor did set off the metal detector as we were going into the Eiffel Tower. It didn't set off the detectors at the airport, so I'm assuming that those are newer and are adjusted to accommodate for medical devices.

The distractor did get a lot of attention in Paris, however. We got lots of curious stares on the Métro and on the streets, and two people did stop me to ask about it. I talked with one man for about 10 minutes about her condition and about the surgery, though it wasn't easy for me because I didn't know the French word for either "distractor" or for "craniofacial" surgeon. It took me a few minutes to convey to him that it wasn't a dermatology issue, but once I explained that the implant was hard and was not permanent, he seemed to understand. He kept repeating how impressed he was with the treatment since he had never seen anything like it in France, and that he wasn't sure that French doctors would even do such a thing. I did say that the treatment was still relatively new in the United States as well, but he still seemed quite impressed (and perhaps a little horrified?) that we had consented to having this done to our baby!

Now that we are home, we are starting to make preparations for the next surgery. We will go in next Friday, on January 31st, for her pre-op appointments, and will then be back on Monday morning for the surgery itself. Dr. Taylor indicated that it's a shorter surgery than the last one, and that her recovery time will be shorter as well. If all goes as planned, we expect to spend one night in the hospital with her, and perhaps one additional night in Philadelphia just to make sure things are ok, then return home on Wednesday. He said it may be 5-7 days for her to feel back to normal, and for her swelling to go down completely, so she may be "off her feet" for that whole week.

I am certainly looking forward to seeing what she will look like without that bump, and I also want to see if there will be any noticeable scar tissue in the area of her forehead where the distractor ended. There has been some on-and-off swelling in that area, so I am hoping that there's no long-term impact to her skin there. We will also need to see what Dr. Taylor says about helmet molding therapy, as he has mentioned it a few times and it seems likely that she will need one. If she does, though, he says that she may only need it for a few months.