Thursday, August 26, 2010

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!!!


Rachel H. said...

Hey Jessica, just been catching up with what's going on with you all on your blog. Thanks for sharing and will keep you all in our prayers. Heard from Sarah G you are in town or going to be. Happy have you all over if you'd like to get out for a visit! Ps. 105:4

KC said...

The worrywart that I am, I can only imagine all the things that must go through your head concerning this. I will be praying that this is 'simply' what it is and there are no related issues.

I will also be praying that God uses this time to draw you closer to Him in a way that you could have never known without going through this.

Love you!

ME :) said...

Bless your heart. I will be praying - both for this appt (it is the day after my b-day) and of course for surgery date. When Abby had her CT scan it went really quickly and we got the results about thirty minutes later. I will be praying the same happens for you - they even allowed me to stand right there beside her. I will be praying Addy lies still - I have to tell you I was SO worried about that with Abby for her MRI and they gave her a slight sedative and she slept through most of it :) and laid so still. Bless your heart. I want to say something encouraging - or do something to help - we are praying for each of you and if there is anything at all more we can do - email me! Sunshine

Tricia Regar said...

I appreciated hearing the update, Jessica. I can't imagine how these things must worry you... My daughter's perfectly fine (as far as I know), and I still find myself worrying over the smallest things. I'll be praying for all of you!! You have a really sweet family. :)