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!