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!