Three Weeks Post-op

Addy continues to look better and better every day! Here are a few pics from Tuesday (3 weeks +1 day post-op).




The cutie has sprung a couple of teeth in the past couple weeks, as you can see in this last pic! :-)

A Couple More

One week post-op

Two weeks post-op (today)

And now we are caught up. :-)

A Few Pics

Day 3 post-op (Thursday). Getting ready to go home!

Day 4 post-op. Swelling going down pretty quickly.

Day 5 post-op.

I would post more, but I can't find my camera at the moment. :-p Grr. I'll try to rectify that tomorrow.

Catching Up

So... I apologize to those of you who have been looking for an update since my last one. I guess this is what happens when I get back home to my two other young children with the one who is still recovering from surgery: I no longer have any time to update. :-)

Jeremy came and picked us up at the hospital on Thursday morning (Dec. 2). Addy's swelling went down quite considerably overnight, so her eyes were about half-open again by the time we left the hospital. Her older sisters were excited to see her again, and I'm sure Addy was glad to get away from that place with all the ladies who come in and wake you up and poke you with various things. ;-) (Not that I'm complaining... I know they're just doing their jobs.)

Addy was a little more quiet and clingy than usual for the first few days after we brought her home, but other than that, she went pretty much back to normal very quickly. I was expecting her sleeping schedule to get all messed up, but she actually went right back to her old routine! Her swelling came down very quickly, and by about day 6 after surgery, you could barely even see any swelling. So pretty much the only difference with the home recovery was having to put antibiotic ointment on her incision and hold her more than usual to keep her happy and safe. Never easy to alter a routine, but a lot better than I expected!

At this point, nearly 2 weeks out from surgery, I'd say Addy is just about back to normal in every way except that her incision is not totally healed up yet. (I assume that will probably take a couple more weeks.) But she is her usual cheerful, wanting-to-be-held-all-the-time, stinkery, cute self again. She is back to her two favorite games -- peek-a-boo and rubbing her hands all over your face ;-) -- and has recently added a new one: dancing. (She wiggles her little head and body back and forth in a playful, dancing manner... SO cute!!)

We saw Dr. Marcus on Wednesday (the 10th) for a follow-up. Apparently he wasn't informed that we were showing up that day, but he passed us in the hallway and basically gave us our follow-up right there! Ha! He seemed pleasantly surprised by how good she looked and how much the swelling had gone down already. (I had rigged up an inclined bed like the one in the hospital using her pack-and-play -- a hint I'd seen on craniokids -- and I think that did help with the swelling.) He said that everything looked great and even went so far as to say, "Did I even do surgery on her?"

One somewhat discouraging piece of news came a couple days before that, though, when we went to see her ophthalmologist at 1 week post-op. (That was probably a bit early, but we were going out of town soon, so I wanted to get it done so I'd know whether we should keep patching her eye, get her some glasses, etc.) The good news is that the surgery did not change anything for the worse. The not-so-good news is that it didn't help anything, either. (It usually doesn't.) The worse than that news is that it sounds like she probably WILL need eye muscle surgery after all... or at least, that's what the doctor said on that visit. Dr. Marcus thought that she may have been speaking a little too soon to be sure, since there was probably still some swelling and settling of the surgery to finish before they could make calls like that. The eye doctor herself said something similar, but more to the effect that we would wait and see for a few months, but that she thought surgery would probably have to happen.

I am personally a little skeptical of this. One encouraging thing is that we found that Addy is using both eyes equally and can see just about as well with each one (other than the astigmatism in her left eye). This is opposed to what she had seen at Addy's previous visit, where she was showing a definite preference for using her right eye and letting the left one drift. We think this is probably a result of the patching.

With that in mind, I have noticed that Addy's left eye definitely does not seem to be drifting as much. But the doctor still thought that her eyes were not completely aligned. This is where I am skeptical. There is a good portion of the time where her eyes are slightly off, but I believe that she CAN align her eye correctly when she is really trying. It is just easier at this point to be a little lazy with those muscles, especially when she is tired. Which, by the way, could have been part of the issue when we saw the doctor on Monday... It was just about Addy's naptime when we got there, and she ended up falling asleep in the waiting room at one point. Not the best time to be evaluating her eyes, I think.

Anyway, I think it is definitely still quite possible that she will need the eye surgery in the end, but I am interested in getting a second opinion and/or exploring non-surgical options. This surgery is a pretty minor one compared with the last one, but still never fun, and it sounds like it is fairly hit-or-miss. The statistics I've read say the problem is only corrected about 65-85% of the time, with the remaining percentage either causing no improvement or even worsening of the problem. Not the most encouraging thing to hear. Many parents that I know of whose children have undergone these surgeries have had to go through them at least twice.

So, that would be a new prayer request for us. We of course want to do whatever is best for Addy to give her the best sight possible, but it would be really nice not to have to go through more surgery... especially multiple surgeries. It would be another 4-6 months before we would get going on another surgery, though, so we have some time to get things a little more figured out. I'll keep you posted.

Oh, and I will post more recent pictures of Addy as soon as I can. :-)

Day 2 Post-Op, PM Update

I am pretty sure Addy's swelling reached its peak this afternoon. This was the day I was dreading almost more than the day of the surgery... but it turned out to be not so bad at all!

As I mentioned in my last post, the drain in Addy's head was removed this morning. (She took that like a champ, by the way!) Our nurse who came in afterward was actually a little irritated with the doctors for removing it so soon, because she thought there might be more to drain. This could have potentially contributed to a little extra swelling today, but the nurse later said she must have been wrong because the drainage site hadn't weeped too much after the tube was removed. So most likely it was going to swell about as much as it did anyway.

Addy's eyes were getting pretty tight this morning, but by this afternoon, all I could see was a tiny sliver of eye when she was really trying. Thankfully, she took this like a champ, too, and barely complained at all! It also helped that she slept most of the later morning and afternoon, so she didn't have to struggle with it for long. (I'm thinking this could be partly a credit to the oral antibiotics, which I discovered were probably making her pretty groggy.)

By this evening, her eyes were opening just a little more again, and she was able to see enough to be in a surprisingly good mood! I put her in her stroller and walked her around the halls for a bit, stopping to see a giant fish tank they have here. We watched the fish for a while, and then she turned to me and leaned forward to give me kisses. It was SO sweet!! :-) She then proceeded to smile and even giggle just a little as I played with her for a bit. I can't wait till my girlie is back to normal again... she is getting there!

Oh, also... the reason the doctors wanted to go ahead and remove the drainage tube was so that she could get her follow-up CT scan. We did that this morning not long after the tube was removed, and Addy cooperated very well and settled down into a doze for the scan. Yay!

She is sleeping peacefully right now, so I think I am going to hit the sack before long. I just put up some pictures of our journey over the past few days, so anyone who hasn't already seen the link on Facebook can check it out here. Caution: the reason I am not posting these on the blog is because they might be a little icky for anyone who is a bit squeamish. I really don't think they're that bad, but then I'm used to seeing things like this by now. So view at your own risk. ;-)

http://picasaweb.google.com/jessicole100/AddySSurgery?authkey=Gv1sRgCJSMsujN8Z31Fw#

OH! And did I mention we can probably go home tomorrow morning? YAY!!!! :-)

Day 2 Post-Op, AM Update

Addy's drainage tube was removed this morning, so she is officially wireless! ;)

We had an adventure with her IV last night, though. She had an IV in her foot, but she kicked it off yesterday afternoon (didn't seem to hurt... she hates things on her feet, so I think she was happier without it). Addy already has a bunch of marks from other sticks (apparently others were having the same problem before they got the original IV in), so it was really hard to find a good spot that hadn't already recently been poked. A lady from the IV team came in and stuck her three times trying to get a line in and was unsuccessful. Another lady came in, looked for a while, and said she couldn't find any good place to stick... Later, two more ladies came in and stuck her twice more before they finally gave up. By this point, Addy was so upset and exhausted, and I was in tears. POOR BABY!!! I really can't blame the nurses (although I was a little ticked that they kept saying they wouldn't stick her unless they found a good vein and then stuck her anyway)... but the doctor in charge was apparently pretty set on having an IV in. Finally, the pediatric nurse was able to convince him to switch her to oral meds so she didn't need an IV. (If he had been in the room watching this whole thing, I have a feeling he would have changed his mind a lot faster.) THANK YOU, LORD!!!

The swelling is supposed to be at its worst today... Her eyes are pretty swollen at this point, but so far she can still open them a least a tiny bit. She will have a CT scan this afternoon to check up on everything. Please be praying this day will go well, especially that she will be able to keep down all her oral meds. Addy has a bit of phlegm in her throat and a little cough, so she has been tending to cough and gag a little when the meds are going in, and a bit of her pain medication came up last time. Thankfully, she seems to be doing okay on pain, and the IV was more for the purpose of antibiotics, which she did keep down. I am really hoping and praying we can keep it this way and not have to put her through anymore of what happened last night!!!

Day 1, Continued...

Addy slept very well for a long time this afternoon, and woke up acting nearly her usual spunky self. She nursed for the first time since the surgery, and is now sleeping again very peacefully. Praise God! We also were moved from the PICU into our own room a couple of hours ago -- yay! Now time for me to try for a nap. :-)

Day 1 Post-Op

Things are going pretty well so far. Addy had a fairly rough night, but I think that was to be expected. She was pretty restless and crabby, but we both got some intermittent sleep at least. Her heart rate has been high, and her blood count was low this morning, so the reviewing doctor (the neurosurgeon) said she was on a borderline of potentially needing another transfusion (in addition to the one she had during surgery). Since we don't have any more directly donated blood, though, he said she was okay to wait and see how she is doing tomorrow. She seems to be doing a little better now, so hopefully we can avoid that.

The nurses wanted to wait until Addy was fairly awake before I held her, so I got to do this for the first time around 4 this morning. She drink a few ounces of clear fluid and held it down, which is a good sign. She has taken a few bottles of breastmilk since then and only threw up once (I think we gave her a little too much too soon), so that is going well.

The swelling is still fairly minimal, but I can tell it is definitely vamping up. Jeremy said the nurse told him that if she was going to swell really bad, though, she would have already been pretty bad by now. Maybe we will be able to avoid the typical eyes swelling shut that I have been anxious about -- that would be really nice!! (Prayer request!)

We've gradually had some of the various lines taken out of her, so now the only things that are actually internally inserted are an IV in her foot and a drain in her head. She seems a bit more peaceful and restful since we got out the two arterial lines that she had in -- yuck.

She did take a few rounds of morphine and some additional Tylenol, but the doctors have ordered that we should try to avoid the morphine now, and she seems to be handling it fine. They gave her a dose of some other pain killer through the IV (I forget the name), and with some Tylenol, that seems to be holding her over pretty well. She has been sleeping much more peacefully for most of the last 5 hours, which is GREAT.

We are still in the PICU right now, but we're hoping to move to a private room on the pediatric floor within the next few hours. I'll keep posting as I can.

Addy's Surgery

Addy's surgery is officially over!!! Everything went REALLY well.

Now for the long version of the story...

We got to the hospital about 9 am. They took Addy back to the OR about 11:30. I went with her and held her while they put her to sleep with a gas mask. She didn't like that very much, but she went to sleep pretty quickly. Leaving her there was hard, but I knew she was in good hands.

At 12:30, we received word that the surgery was started. We got updates about every hour after that, letting us know that everything was going well. (That was definitely helpful!) A little before 5, they told us the surgery was finished and called us back to talk with her doctor.

Dr. Marcus (the plastic surgeon) told us that the surgery went excellently. She had very little blood loss -- he said they probably would not have even done a transfusion except that they already had my donated blood there, so they went ahead and gave some of it to her to make her a little more comfortable. He was very happy with the way the cranial vault reconstruction (reshaping of her head) went. He said he actually got through that part really quickly -- in about 3 hours -- but the little dermoid cyst on the back of her head was apparently pretty annoying and took about another hour after that. But overall, he thought everything went really great and really smoothly.

When we saw Dr. Grant (the neurosurgeon) later, he added the good news that her brain adjusted right back to where it should have been if her skull had not been compressing it a little. All good on that front as well!

We got to see Addy about 5:30. She looks GREAT!! I mean, she definitely looks like she has been through a lot, but she looks a lot better than I thought she might. And we are very happy with how her reshaping of her forehead looks. This will not be a final result at all and will be changing over the next several months and even years, but it already looks a lot better.

As of less than an hour ago, she was going in and out of sleep a little, but is mostly sleeping, waking up and crying for a minute, and then going back to sleep. We'll see how things go throughout the night.

For now we are praising God that everything went so well. Thank you, Lord!!! And thank you all for praying! Please continue praying for her as she recovers. THANKS!

Addy just after surgery

(I will be posting a link to more pictures later at some point.)

THE Date (We Hope)

OKAY! Third time's the charm... or so we hope anyway. :-) Surgery is now scheduled for Monday, Nov. 29th. We'll know the exact time by Friday afternoon. Please pray for health and a go on the surgery this time! Thank you all for praying with us!!!

Surgery Canceled... Again

Addy is mysteriously sick again. Fever up to nearly 103.5. I suspect either a freak flu or roseola. This is seriously the second time she's gotten sick in her life. But, like the first time, it is causing another surgery cancellation. I am really, really frustrated right now. But I know I have to believe God is still good and in control, even when I don't always feel it.

New Surgery Date

Got a call this afternoon with a reschedule date: November 22. YAY!! Thank you, Lord, for a quick notification and a quick reschedule time!!! We are working out the details right now, but we should be set for that point. I'll be so glad to have this thing OVER!! :-)

Surgery Postponed

Update: Surgery not happening today. We brought Addy in since she seemed to be a little better this morning, but when the anesthesiologist (who makes the final call) saw her, he pretty much immediately told us there was a problem. Most likely she has Fifth disease. Hoping to hear back this afternoon about when they can reschedule.

Thursday Update

So... um... Frustration of all frustrations, Addy suddenly came down with a fever today for the first time in her life. UGGH. The docs are still willing to at least evaluate her tomorrow morning to see if she's all right for surgery, but right now I'm thinking it's doubtful. I don't think I will be comfortable with it unless her fever is gone when she goes to bed tonight. PLEASE PRAY!!

Pre-Op Updates

This time next week, Addy will most likely be in surgery.

We are still not sure what the exact time of the surgery will be: they will let us know the afternoon before. (They always leave the schedule open until the last minute in case they get any emergency patients or have to postpone a surgery if one of the patients gets sick.) Most likely, though, we will get the first slot, meaning Addy's surgery would start around 7:30 am. An early day for us, to be sure, but I think it's preferable to go ahead and get this thing over ASAP.

After all of our pre-op appointments yesterday, this is finally beginning to seem real. I am not looking forward to spending all that time in a hospital with a likely miserable baby, but I will be glad to get it done and resolve Addy's health concerns.

Speaking of which, we learned a few things yesterday. First of all, the small lump on the back of her head is a dermoid cyst. To my understanding, this is something that occurs during development in the womb. As two suture lines of the skull close during embryonic development, dermal or epidermal elements can be pinched off and form cysts. This seems to be what has happened in Addy's case. Dr. M thinks they should be able to remove it during her cranio surgery, but they will have to see how it goes. This would be very good news for us if they could go ahead and remove it, since it would mean one less surgery we'd all have to go through!

Another thing we learned happened during our pre-op eye doctor visit. Normally any child with craniosynostosis will be sent to an eye doctor before the operation to check the position of the eye orbits, and then again afterwards to make sure nothing has been improperly displaced as a result of the surgery. In Addy's case, it was especially informative because she was already displaying some eye misalignment that we wanted to learn about.

It turns out that this problem could be related to the craniosynostosis, but not necessarily in the way that we thought. Dr. Y (the ophthalmologist) found that Addy has a pretty substantial astigmatism in her left eye. This could be caused (at least partially) by the improper shape of her head, which causes her eye shape to become skewed and thus cause the astigmatism. So it is possible that this could be corrected (at least partially) during the surgery.

The problem that is occurring, however, is that the astigmatism makes Addy's vision in that eye very blurry, which means that her brain will prefer to ignore that eye and use only the right one. This causes the muscle in the left eye to become lazy since it is not being used very much, and as a result the eye will tend to drift to the side.

If it were to stay this way, Addy's brain would eventually learn to ignore that eye permanently, so she would lose her depth perception and 3D vision. It is especially important to make sure the problem is corrected before she is a year old. I am hopeful, however, that we may be able to correct the problem without further surgery. We essentially just need to teach her brain to recognize and use her "bad" eye, both with patching and (probably) glasses sometime shortly after the surgery. Yes, we will most likely have one of those kids with the cute little glasses. :-) I have never seen one as young as Addy, but I'm sure she'll grow into it.

It is possible, however, that her eye muscles may still require surgery to tighten (or loosen) them after her other surgery. Please be praying that this will not have to be the case, and that we can resolve this problem with non-surgical methods!

Other than these bits of news, most of our day yesterday was spent learning more about the surgery and the logistics of our stay there. It will be interesting, that's for sure, but it sounds like it should be about as convenient and accommodating as a hospital stay can be. I will likely be staying with Addy for the majority of the time -- maybe switching off or sharing the duties with Jeremy for some of the time. We'll see how it goes.

Please be praying...

1) For Addy to stay healthy in these days leading up to the surgery. We really don't want to have her get sick and then have to postpone everything and figure all this out over again!

2) For everything to go really well with the surgery -- that the Lord would guide the hands of the surgeons and give them the wisdom to know exactly what is best for Addy. Pray that everything would go as safely and smoothly as possible.

3) That the cyst might be able to be removed this time and not require an additional surgery.

4) That the surgery might help and not harm Addy's eye situation, and that the remaining issues would be able to be corrected without further surgery.

5) That Addy would not have too much swelling or be too uncomfortable or frustrated. There can be quite a bit of swelling with this surgery, so much that the eyes will very often swell shut. You can imagine how frustrating that would be to a little one who has no understanding of what is going on. Please pray that the swelling would be as minimal as possible and that Addy would be able to stay as calm and get as much rest as possible.

6) That we will get good nurses! I know how frustrating it was to have rather insensitive nurses when Lucy was in the NICU, and I would really appreciate not having this problem with a much more intense situation here.

7) For the rest of the family. Pray that the girls would do really well while they stay with Jeremy's mom, and that they would not miss me too much. (I have never been away from them for more than 12-24 hours once or twice in their lives, so this will be very different for all of us.) Pray for Jeremy to have the wisdom he needs to know where he is needed most and the strength to take care of whatever needs to be taken care of. Finally, please pray for me to have the strength and wisdom I need to care for Addy during her recovery. And pray especially for us all to have peace, recognizing that He is in control and will supply all our needs during this time.

Thank you all again for your concern and your prayers!

Update from Today -- CT Scan, Etc.

First of all, THANK YOU to everyone who was praying today!!! Your prayers were answered, and everything went very smoothly and was very informative.

We went in around noon for Addy's CT scan. Since Addy had been up all morning and I figured she would sleep in the car for the whole 45-minute drive, I was about 90% convinced that she was going to need to be sedated for the procedure. When we got there, however, she was wide awake. I'm still not sure whether she slept in the car or not (she was completely silent the whole time).

In either case, she was acting tired and very hungry by the time we got to the waiting room. I had not been allowed to give her anything except a few ounces of water for four hours, so it was no wonder. When one of the nurses saw how Addy was acting, she suggested that maybe I could just nurse her to sleep for the procedure. That sounded good to me, but then another nurse explained that if we did that and it didn't work, we would not be able to use the sedation method, since they have to have an empty stomach for that. In other words, we would have to reschedule if Addy didn't go to sleep after nursing.

Based on how Addy was acting, I decided to take the chance. I know some of you must have been praying for Addy not to have to be sedated (I was, too), because she fell asleep like a charm and stayed perfectly still while the scan was done. No drugs needed -- YAY! The results were great.

Afterward, Addy and I went to see the same doctor (Dr. M) with whom we spoke last time we went to Duke. I had several questions on my mind that I wanted to address, the foremost being whether or not there were any surprises that showed up on the CT scan. Thankfully, there were not. The scan showed a right coronal synostosis (as we already knew), and all other sutures look open and normal. Also, the doc showed me how there was plenty of fluid (i.e. space) between her brain and her skull, so there is no indication of intra-cranial pressure -- a concern of mine, since that can cause headaches and potentially brain damage if it is bad enough. As Dr. M put it, "That is a very comfortable brain." With that in mind, there should be no problems waiting until November to have the surgery.

The remainder of my questions mostly related to the following:

1) Is there anything wrong with her eyes that will need to be corrected in some way beyond the cranio surgery? (If you remember, she has one eye that tends to deviate slightly from the other.) What about her neck / head tilt?

2) Addy has a small, pea-sized lump on the back of her head that I noticed a few weeks ago. What is that, and is it related?

3) What exactly is the road map for the surgery -- i.e., how will you proceed?

The third question was probably the easiest to answer. Dr. M went over exactly what he would be doing during the surgery -- which pieces of bone he would be removing, how he would re-shape them, how he would put it all back together, and what materials he would be using to hold it in place. It was rather fascinating, so long as I didn't think too much about the fact that this would be happening to my baby's head in the near future! Thankfully, it sounds like Addy should have a well-built head and face that should be able to withstand the bumps and bruises she is sure to incur during toddler-hood. (Once she gets past the first 12-15 months post-op, the materials used in the surgery should all be dissolved and it will be her own bone anyway, so not much different than a normal child's head.)

The second question ended up being inconclusive. Dr. M felt the lump and mentioned the possibility that it could be a small cyst on another of her suture lines (which he said happens sometimes -- unrelated to the craniosynostosis). When he looked at the CT scan, however, he couldn't find any evidence of it. He had the radiologist look over it as well, with the same result. So, we are still not sure what the deal is with that. Dr. M said he would look over the scan again and let us know. If it is a cyst, Dr. M made it sound like a fairly simple procedure to get it removed.

The answer to the first question was very informative, though not necessarily all that encouraging. Dr. M said that in about 10% of coronal cases, children will have some kind of strabismus, or lack of eye alignment. He explained that this is because the bones of the head have grown abnormally, and so the muscles of the eye are not quite in the right place. They can be looser than they are supposed to be, so the eye tends to drift a little where the muscle is weak. Sometimes this happens to be corrected with the cranio surgery, but that is pretty rare. Other times, it can be fixed with a regimen of eye patching, to help the muscle strengthen and tighten itself. If that doesn't work, another surgery may be required to tighten the eye muscle. If so, it would probably have to happen as soon as possible after the first surgery heals enough (which should be around 4-6 weeks), since it can cause permanent vision problems if left uncorrected.

As for the head tilt, Dr. M didn't think it was serious enough to need any medical attention, so that at least was a relief.

With these things in mind, here are our current prayer requests:

1) That we would be able to find out what the lump on the back of Addy's head is and get it resolved without too much trouble.

2) That we would be able to get Addy's eyes taken care of as easily as possible and in such a way that her vision would be preserved. Obviously, it would be AWESOME if the cranio surgery would just fix this problem right off, but please pray that the eye patching would work if that is not the case. If she does need further surgery, please pray that we would be able to get through all that as well. Specifically, it would be really nice to get that surgery done before the end of the year, if it is necessary, since we will already be paying our yearly out-of-pocket limit for the other surgery and would have to do it all over again if we had to wait till next year! (This same request would be true if surgery is required for the lump on her head as well.)

Obviously the fewer surgeries, the better, so please be praying that we could get everything resolved in as few surgeries as possible!!!!

3) That God would strengthen and equip us, the doctors, and especially Addy for the days ahead. Please be praying that all would go smoothly, with no complications, and that Addy would do well and heal quickly.

And as a reminder, the surgery is scheduled for November 12th. Please be praying for that date.

Thanks so much again for following along and praying for all this!!!

Another Appointment

Now that we have a surgery date set, I have been re-thinking and second-guessing our decision a little bit. This is mostly because I have been watching Addy ever since her diagnosis and seeing that the asymmetry of her head is getting a little worse (which is to be expected, since the head may not want to grow correctly, but the brain keeps getting bigger regardless!). And also, more significantly, I have been noticing that she is not quite as happy and content a baby as she once was. I wonder whether she is suffering from headaches, which is not as likely for a baby with only one fused suture, but is still possible. I have joined an online forum of parents (mostly moms) whose children have craniosynostosis, and a few of them have said they believed their children had the same thing. Some said their babies' moods were much more mellow or even completely different after the surgery was done!

So because of this, we decided to try to get her CT scan done a bit earlier than the surgeons were originally planning. Normally, they do it very close to the surgery date, just so they can get an up-to-date road map for the surgery, so to speak. However, it is not completely necessary to wait that long, and I will feel a lot better if we can determine that it will not be dangerous or miserable for Addy to wait until November for her surgery. I have it on good authority that if for some reason the CT shows that her brain is under pressure (causing the headaches) or something else to show that she needs surgery earlier, they will make it a priority to get Addy in as soon as she needs. Her doctor normally likes to do these surgeries when the baby is around 7 months old, but we will see if that is best for Addy or not. Our CT scan and then appointment with Dr. M are scheduled for Sept. 16, three weeks from today.

We would appreciate prayers for this appointment. We want the CT reading to be as good / accurate as possible, so Addy will need to be very still -- either asleep or under some mild anesthesia. Natural sleep would obviously be preferred, but please be praying that God would allow whatever is best to get a good scan. Please also pray for our appointment with the doctor -- that we would be able to get our questions answered and determine whether the date in November will be the best date for her surgery.

On another note, I have been finding some great advice and encouragement from the moms on the online forum mentioned above! It is really nice to be able to talk with other moms who have dealt with the same things that we are going through, and to receive help from them about what to expect, what to watch for, questions to ask, etc.

Oh, and by the way... I don't remember if I mentioned this before, but Addy also has a bit of a head tilt, and her left eye drifts a little bit to the outside and down from the other eye. I used to think the head tilt was just because the left side of her head is bigger (and thus heavier), and it might just be the weight of it that is causing her to tilt her head. Several of the moms mentioned that their children had the same issue, though, and in some cases it seemed possible that it wasn't really related to the craniosynostosis (although some of the moms did specifically say that it got better after the surgery). Several of them also mentioned eye problems, which could very well be related to the head tilt... I have heard both that the head tilt can cause the eyes to set themselves differently so the baby can see clearly, and vice versa -- that the eyes can be misaligned and cause the baby to tilt his/her head to level out the eyes. I am not sure that either of these is the case for Addy, but I do suspect that the two are somewhat related. I have heard that giving her more tummy time can at least help the neck issue, and since I have been encouraging that, both the head tilt and the eye issue seem to have improved a little.

In any case, please be praying that we can figure out what is causing both these issues and get them resolved.

Thanks to everyone for all your prayers and support!!!

Surgery Date...

...is scheduled for November 12. Other details to follow in the coming weeks.

FYI

Just in case anyone is wondering, I have still not heard when the surgery date will be. The woman who schedules these things did not contact me by the end of last week, and I didn't know until I called yesterday that she is apparently on vacation all this week. :-p So hopefully I will know sometime early next week. If they don't call me, you can bet I will be calling them. ;-)

Choosing the Open Procedure

Update, short version: We have decided to abandon the endoscopic option and have the traditional open surgery for Addy. The operation will be at Duke hospital, most likely sometime in November. We should be receiving dates for the surgery and pre-op appointments by the end of this week.

And now for the long version...

We went to Duke for a consultation with Dr. M (the pediatric plastic surgeon) this past Thursday. We also had a short talk with Dr. G, the pediatric neurosurgeon with whom Dr. M performs these surgeries. Dr. M examined Addy and looked at her x-rays to confirm the diagnosis of craniosynostosis -- which he did, to no surprise. He then took some time to explain to us a little more about craniosynostosis, what the traditional surgery is like, and how it compares to the endoscopic procedure. To our surprise, he was relatively familiar with the doctors in San Antonio whom we were considering (Dr. G had actually worked in the same hospital with them for a time), and his review of them was not altogether negative. In fact, he said that if Addy's case had been a saggital synostosis (down the middle of the head), he might have actually encouraged us to go the endoscopic route. He said he was almost convinced that he should start using this method himself. For coronal synostosis like Addy's, however, he still believes that the traditional method provides the best results.

Here are the main differences between the procedures. The endoscopic surgeon makes two incisions -- one in the middle of the head and one near the ear, for Addy's case -- of about 1.5 to 2 inches in length. They then remove a small piece of the bone along the place where the two plates have fused together, to release the fused point. Afterwards, they use a specially fitted helmet to encourage the head to grow in the right shape. This helmet must be worn 23 hours a day for approximately 12 to 18 months, with refittings approximately every 3 months.

In the traditional procedure, the neurosurgeon makes an incision from ear to ear (zig-zagged to make the scar less noticeable under the hair). They then actually remove the bones and hand them over to the plastic surgeon, who molds the bones into a more normal shape. Then they replace the bones and fill the gaps with dissolving screws and other materials to help keep the bones in place. A more symmetrical result will be noticeable immediately, and no helmet is required after surgery.

The biggest disadvantages that we could think of to the open procedure were having to wait to get the procedure done, length of surgery time (and time under anesthesia), common need for blood transfusion (because of blood lost during the surgery), length of stay in hospital, limitations on sports activity in the future (something new that came to my attention last week), and the general invasiveness of the procedure. Dr. M answered our questions as follows.

Having to wait: The open procedure is usually done between 6 and 8 months, while the endoscopic procedure essentially needs to be done ASAP, and definitely before 6 months. Part of the reason we liked the endoscopic option is because we were afraid that waiting that extra 3 months might be damaging to Addy's health. Dr. M explained, however, that even if we never had the surgery, it's very likely that Addy would be completely normal and healthy, albeit with a misshaped head. The growth of the brain is what determines the head shape, and if the growth is cut off in one direction by a closed suture, the brain simply continues to grow in whatever direction it can. In some cases (especially if more than one suture is closed), this can cause increased pressure in the brain, which can lead to headaches and even brain damage. However, Dr. M said that this only happens in about 10-15% of cases. So, unless he has reason to believe that Addy is suffering from one of these cases (which he did not say he did), it should not be harmful to Addy's health to wait the extra time.

Surgery time: The surgery time for the endoscopic procedure is normally about an hour in length, whereas the open surgery will typically take about 3-4 hours. While this does mean longer time under anesthesia, in the scheme of things, this really isn't that much longer. Or, as Dr. M put it, "it's not nearly as long as some of the other surgeries that we do here." There is always a risk under anesthesia, but Dr. M assured us that the anesthesiologists would keep a close eye on Addy and make sure that she is handling it all right.

Blood transfusion: First of all, Jeremy or I can donate blood specifically for Addy's surgery, to have on hand in case she needs it. Secondly, while this procedure does have a high rate of transfusions, this is not necessarily a bad thing. As Dr. M explained it, someone who is trying to advertise a low transfusion rate (such as the folks in San Antonio) may be inclined to push the limits a little further than necessary, just to keep their rates down. Not that they would push it to an unsafe level, but they might let it drop a little lower, instead of going ahead with the transfusion to try to make the baby feel better and more comfortable after the surgery. Dr. M told us that they will normally put a line in the baby and make the transfusion slowly over the process of the surgery, unless the baby is just doing great (with very minor bleeding) and looking like he/she doesn't need a transfusion at all. So while the amount of blood lost sounds scary, the transfusion process is safe and helps the baby feel more comfortable.

Length of stay in hospital: The typical stay after Duke's procedure is about 4 days, versus 1-2 days with the endoscopic team. While this will make the total more expensive, the cost to us will be no different, since we figure we will be paying up to the out-of-pocket limit on our insurance for either surgery. And while it won't be fun to stay in the hospital for that long, we would have spent at least that much time away from home and our other girls anyway, since we'd have to fly away to San Antonio. This way, we can at least make easy trips back home if we need to.

Sports activity: I had heard from another mom who chose the endoscopic procedure that, unlike children who had the open procedure, her child had no limitations for sports. Dr. M, however, said that an child who has had an operation such as this will want to avoid rough sports to avoid trauma to the head. He said that this is usually not as much of a problem for girls, since they are not usually going to want to play football or rugby. He did say that they are a little uncomfortable with soccer (which is one sport I would consider letting my children play), but it is not completely out of the question.

General invasiveness: When it comes right down to it, I think the main reason I was rooting for the endoscopic option was simply because I, as a mother, get pretty squeamish when I hear what is necessary for the open procedure. The thought of my baby's head essentially being taken to pieces and put back together, and of having her come out of surgery bandaged and bruised almost beyond recognition, is NOT something that makes me comfortable in the slightest. After talking with Dr. M, however, I have confidence that these are experienced surgeons who have performed this surgery many times. They know what they are doing, and they have had great success and few complications in doing it. Dr. M himself has been performing these surgeries for at least 8 years, not including his time in medical school, with about 30-35 cases a year. In all that time, he listed only a handful of complications, with the probably worst of them being an infected incision which required reopening and cleaning out. In other words, complications are very rare.

As I mentioned above, Dr. M seemed pretty familiar with the folks in San Antonio, and as he put it, if he thought that their method was really the best, he would already be doing it. Contrary to what I had assumed before our talk, the endoscopic method has been around for a fair amount of time as far as the medical world is concerned (about 10 years), and it is still not very well received by doctors around the country. Jeremy's cousin's wife, who is a doctor at Washington's Children's Hospital in Seattle (which is apparently one of the best places in the country for treating craniosynostosis), gave us some information from one of their neurodevelopmental pediatricians who has a number of patients with the condition. This doctor, like the doctors at Duke, felt that the open procedure was the best option.

Dr. G, who had worked near the doctors who perform the endoscopic surgery in San Antonio, provided a helpful perspective as well. Although he had good things to say about these doctors, he said that he would still recommend the open procedure, especially for unicoronal synostosis (i.e., fusion of a single coronal suture, from the middle of the head to the ear on one side, as Addy's is). Unlike the other forms of craniosynostosis, this is the only form that causes an asymmetrical misshaping of the head, whereas other forms will cause an abnormal but symmetrical shape. This makes it more difficult to achieve an aesthetically pleasing result, since we like to see symmetry on both sides of the head. For this reason, the open procedure will generally work better, because they are able to actually shape the bone, instead of using a helmet to hopefully help the bone to grow in the right shape. If for some reason the helmet didn't work, the child might need the open procedure down the road anyway, which would be far worse because the child would be older, more mobile, more aware of what was happening, and have harder (less malleable) bones.

Of course, as far as we could tell, this second surgery would not be entirely necessary (i.e., it would not be a threat to her health not to have it) -- it would just be needed to achieve a more aesthetically pleasing result. While this would make a difference, especially to a girl, it is not crucial, and did not factor largely into our decision. Essentially, what it came down to was the feeling that we were debating between two surgeries of approximately equal value -- one slightly more risky, but still very safe and effective. If one had presented itself as significantly superior to the other, we would have gone with it. But in the absence of a clear-cut winner, we had to factor in the elements of cost and convenience. And with the necessity of plane trips to and from San Antonio several times in the next few years, PLUS the inconvenience of having to make Addy wear a helmet for a year or more, going to Duke seemed to be the best choice.

Thank you for all your prayers for wisdom. We would appreciate continued prayer that everything would go smoothly from here.

I will hopefully be updating soon with a surgery date.

More Info on Endoscopic Treatment

I did a bit more calling around yesterday and learned a few things.

First of all, I called the St. Louis Children's Hospital to get some more information about whether Addy could be accepted as a candidate for endoscopic surgery at their facility. The receptionist talked to the doctor there, and told me that while in the past they have corrected cases of coronal synostosis using the endoscopic procedure, they were "not excited" about the outcome. Meaning, the results didn't look as good and the head shape did not correct itself as nicely. (I asked if this meant they had problems with the sutures closing up again, and she said that did not normally happen.)

Apparently, most of the surgeries that are performed endoscopically in St. Louis deal with saggital synostosis, which is when the bones fuse together down the middle of the head. (Saggital synostosis is the most common type, making up about 50-60% of cases, while coronal is the second most common with 20-30%.) The receptionist told me that the doctor would be willing to consider performing the surgery on Addy, but we would have to go into it with the understanding that she might need further correction down the road.

With that in mind, I tried contacting the University Health System in San Antonio. In my searches for doctors who perform this surgery, this facility was the first thing that came up. I didn't try them first only because their location is significantly further away. Apparently, though, these people are the pioneers of endoscopic treatment of craniosynostosis, and the lady who answered my questions there gave me the impression that they do only endoscopic repairs. (I forgot to ask for complete clarification on that point.)

Besides these factors, I was also impressed by the fact that, even though I contacted them by email instead of by phone, the nurse there called me back within about a half an hour of my email. She was very helpful in answering my questions, and she sent me an email with more information soon after we got off the phone. It also doesn't hurt that they have a video on their website showing Addy's exact condition and explaining how they treat it, plus a whole series of before and after photos for coronal synostosis patients!

Obviously, this facility does routinely perform endoscopic surgery on coronal synostosis patients. The nurse there told me that they have had good results with these surgeries, but emphasized that they are very dependent on helmet therapy following the procedure. Apparently this would involve Addy wearing these helmets until she was 12-18 months old, getting new helmets 4-6 times within that period to adjust for her growth. The nurse also emphasized that we would have to return to San Antonio for these helmets and not get them done somewhere else, because (as she said), "other places do it wrong." That could explain why the people in St. Louis have not seen good results, if they do not do the helmet therapy correctly.

So, we are still going to meet with the surgeon at Duke on Thursday. Unless he gives us a good reason to pursue the traditional "open" treatment, however, we will most likely see if we can get Addy accepted to the place in San Antonio. We are definitely liking what we are seeing there, and although the distance is further, it sounds worth it, especially since it seems advantageous to get this issue fixed as soon as possible. I asked the nurse in San Antonio whether she could tell me the risks of waiting for the open procedure, and she said she could not tell me specifically, except that the brain would continue to grow and skew the head shape even further the longer we wait. That will be one question on which we can hopefully get more clarification on Thursday.

Please pray that we will get all the information we need to decide which method of surgery would be best for Addy. Please also pray that we would get accepted to San Antonio if that is the route we choose, and that God would work out the logistics of getting us there for the surgery and follow-ups.

Thanks!

Current Pictures

This series of pictures should show you a little more clearly what Addy's case of craniosynostosis looks like. The probable closure is the right coronal suture (going from the middle of the head down to the right ear).

Here she is! Ain't she a cutie?

Below is her "concerned" face. This look was even more exaggerated when she was first born. You'll noticed that the left side of the head (on your right in this picture) looks slightly larger than the other, the right eyebrow looks higher, and the left eye is slightly deviated from the other one. My pediatrician seems to think the eye deviation may be because there is pressure on her optic nerve, but a surgeon's assistant with whom I spoke seemed to think this was unlikely because of where the optic nerve is in the brain. I'm not sure who to believe on that matter.

Left side of the face -- looks normal and cute

Right side of the face

You may notice this side of her face looks fairly different than the other. You may also see the slight bump in the middle of her head, showing where (I believe) the front bone is slightly overlapping the back.

Here you can see that the left side of the forehead is definitely positioned further out than the right side.

Even more clearly here...

This is most obvious from the angle of looking down on her head, as in the picture below. Notice you can actually see her right eye from this angle, but you can't see the left eye. The forehead is retracted on the right side like this because the fused bone has not allowed it to expand forward as it should. (Compare this to the craniosynostosis photo in this post, and you will see why I said that picture looked like Addy.)

Back of the head -- note the left side is bigger than the right here too

She still is pretty darn cute for having a crooked head, though, isn't she? :-)

Being silly

We love you, little sweetie pie!

Our Current Plan

Our pediatrician (Dr. Y) is out of town this week. Because Addy is already getting close to the age where she will be too old for the endoscopic surgery, we really need to get the ball rolling if that is going to happen. Hence, I have been researching this matter and calling all over the place for information for myself. I guess I'm too impatient to wait for my doctor to do all that for me.

I have contacted the facilities in which endoscopic surgery is available in NY, FL, and MO. I am unsure whether any of these (or others) would accept Addy's case even if we decided we would like to go the endoscopic route. As one of the doctor's assistants told me, the endoscopic procedure "looks great on paper," but it isn't really that simple.

I today spoke with another doctor's assistant at Duke hospital, which is not far from where we live. I explained our situation and told her that we are essentially trying to weigh pros and cons at this point, but we are not exactly sure if we know what all the pros and cons are.

Although Duke does not offer endoscopic correction of Addy's condition, they are a good facility for performing the open procedure. We will likely go to them if we decide to go that route. The woman I spoke with today advised me to speak with one of the surgeons who actually does these surgeries at Duke. He will hopefully be able to confirm Addy's diagnosis and tell us whether she definitely does need surgery. He should also be able to give us some more of the pros and cons that we may not know about, in order to determine what would be the best method of surgery in Addy's case.

Our appointment is set for Thursday, the 29th. Please pray that we would be able to get our questions answered, and that God would give us the wisdom to know which method of surgery would be best for our little girl.

Thank you for your thoughts and prayers as we begin this journey.

Treatment / Surgery Options

How is craniosynostosis treated?

(Please note that this is merely my understanding of the treatments at this time. I will likely learn much more as I go along.)

There are two types of surgery available to treat this condition. The traditional "open" method involves making an incision from ear to ear across the top of the head and peeling back the scalp in order to access the fused bones. A piece of the bone is removed to reopen the suture, and the bones are repositioned to achieve a more normal shape. Customized helmets are used after surgery to further guide the bones to grow in the correct shape (in most cases, I believe).

A newer method includes the use of an endoscope in order to provide a less invasive treatment. With this approach, two small incisions (and inch or two in length) are made, and an endoscope is used to guide the separation of the bones beneath the scalp. Helmet therapy must be used after surgery to guide the growth of the bones. This surgery, however, is only available to children under 5 months of age. (Some facilities only accept patients under 3 months.) Older children require the more extensive surgery described above.

What are the pros and cons of the different surgeries?

This is the million dollar question at this point. :-) Here is what I have been able to determine so far. All of this is to the best of my knowledge, but I could very well find that I am mistaken once I learn more.

For endoscopic surgery --

Pros:

* Less blood loss -- About 10% of cases require a blood transfusion, whereas blood transfusions are very common with the traditional open surgery.

* Shorter surgery length -- These surgeries typically take about an hour, whereas the open surgery can take up to 6-8 hours (though I assume this is probably for more series cases).

* Shorter hospital stay -- Children generally are held for observation for about 1 day, versus a typical 3-7 days for the other method.

* Less scarring -- Since the incisions are much smaller, obviously the scarring will be less. Either way, though, doctors try to give a result that will not be obvious once the hair grows out.

Cons:

* Limited availability-- The endoscopic version of the surgery is only available at a handful of facilities around the country, including New York, Florida, Missouri, Texas, and California. I have found a total of 9 facilities to date that offer it according to their websites.

* Time constraint -- As mentioned above, this surgery is only available for children under 5 months, and is ideally done by 3 months. Since Addy is already just over 3 months old, she is pushing the age limit if we are not able to get this done asap.

* Longer helmet therapy -- It is my impression, though I have not heard this directly, that the helmets would have to be worn longer than with open surgery (probably until she is a year old, as opposed to maybe for 4-5 months).

* Possibility of further surgery -- I have been told that it is possible (perhaps even most likely?) that Addy's type of craniosynostosis (coronal) will still require the open surgery to be performed when Addy is older, perhaps around 2 years old. I am not sure whether this is because the suture will most likely close again and cause more problems, or whether there will simply need to be a few adjustments made in order to achieve a more symmetrical, aesthetically pleasing head and face shape.

At this point, we are trying to determine which type of surgery will be the best for Addy. More details in the next post about how we are planning to work on this determination.

What Is Craniosynostosis?

Until two weeks ago, I had never heard of this condition, much less needed to research what it was and try to pronounce it in discussions with hospitals all over the country. You can find plenty of information about the condition on the internet (which is mostly what I have done), along with pictures of extreme cases that will scare you silly. Rest assured, Addy's case is not that frightening to look at. (I plan to post a few pictures soon.) But for those who don't want to spend hours on the internet researching the condition, I will try to provide some basic information here. I just might be stealing some things verbatim from the Wikipedia article on it (among others), but let's just keep that to ourselves. Fortunately there is no penalty for plagiarism here.

What is craniosynostosis?

Craniosynostosis is a condition in which one or more of the sutures (gaps between skull plates which are held together with strong, fibrous tissues) closes prematurely in an infant's head. Normally the sutures remain flexible throughout childhood, allowing the brain to expand as needed. When the sutures close prematurely, it can cause the head to grow abnormally as the brain tries to find other directions in which to expand, and it can cause brain damage if not corrected.

Normal infant head

An example of craniosynostosis which looks almost exactly like Addy's case

(note the closed suture and asymmetric head shape)

Upon initial diagnosis, Addy apparently has a closure of the right coronal suture, as pictured above.

What causes craniosynostosis?

The cause of the majority of craniosynostosis cases is unknown. It is estimated that it occurs in 1 out of every 2000 births, so it is fairly common. It can be the result of an inherited syndrome (about 20% of cases), or it can occur sporadically, without any known link or cause. Addy's case seems to be the latter, as she is physically and developmentally normal in all other areas as far as we know.

Other important questions to be answered in the following post...

About Addy -- Initial Diagnosis

Addy was born on April 20th -- a beautiful baby with a beautiful birth. I noticed very quickly after her birth that her head had a bit of a strange shape to it, but wrote it off as being a little misshapen from the birth. I expected it would right itself within a few days or weeks.

At her 2-week check-up, the nurses thought it strange when I pointed out that her head shape had not changed much. The left side was a bit higher and bigger than the other, and the front skull plate on the right side seemed to overlap the one behind it. I was told it should correct itself in time.

When Addy was 7 weeks old, I took her to a new doctor consultation. We had not picked a pediatrician before she was born, so we were going to Dr. Y to find out a bit more about her practice. We liked what we saw and decided to make an appointment for July 8th, for Addy's 2-month check-up. Before we left, I asked Dr. Y to take a look at her head and tell me what she thought. She agreed that it would probably correct itself, but said we should keep an eye on it.

I watched her head carefully over the next month. While the height difference between the left and right side seemed to even out a bit (or at least the difference became less distinct), the overlapped plates on the right seemed to remain the same. The right side of her forehead was also retracted backward compared to the other side, making her right eye open wider and appear almost bug-eyed sometimes. In addition, I began to notice that her left eye was a bit "lazy" at times -- deviating a bit to the left and down compared to the other eye. Also, the back of her head clearly showed that the left side was bigger and wider than the other, making it difficult for Addy to hold her head up straight because of the weight difference.

At our first official appointment with Dr. Y, I expressed my concern about these things right at the outset. Dr. Y completed her usual examination, and while she found Addy to be completely healthy and normal in all other ways, she wanted to check into Addy's head issues further, particularly because it could possibly be affecting her left eye.

Dr. Y called me later that day, requesting that I take Addy to an urgent care to get her head x-rayed. She told me that Addy may have a condition called craniosynostosis, which in layman's terms means that some of the skull plates have fused together prematurely. I took Addy in for the x-ray, and sure enough, the doctor who reviewed the x-ray believed this to be the case.

Although this is not a completely "official" diagnosis, I am quite sure that Addy does indeed have craniosynostosis. I have done enough research and seen enough pictures of children with the condition to convince me. We should be finding out soon whether the initial diagnosis is correct.

If Addy does have this condition, she will most likely need surgery to separate the fused bones, allowing her brain and head to grow normally as they need. I have read some places that helmet therapy can be used in place of surgery (using custom-shaped helmets to encourage the head to grow in the correct shape), but other seemingly more official reports have stated that surgery is the only possible treatment. (My guess is that the difference may be because some children have suspected craniosynostosis, but it turns out to be a different condition which can be treated with helmet therapy.) To my knowledge, craniosynostosis is treated with helmet therapy in addition after the surgery is complete.

We are still in the information-gathering stage at this point. I will soon be posting more of what I have learned up to this point (hopefully answering some questions that family and friends may have), and will update further as we find out more and continue on this adventure.