First visit with Dr. Mackay

Today was our follow up visit with Dr. Gregory Mackay, who does the reconstruction part of the surgery for Lucy's condition. We got there in plenty of time but we ended up having to wait for at least 40 minutes to see him. Why do doctors make you wait so long? I would even be okay if they were honest and said, "It's going to be 40 minutes before we can get you back there" because I would know that I had time to nurse her or change her diaper or whatever. Instead they leave you hanging and then you never know when they might come a'callin'. Oh well. That is totally unrelated to the visit and totally related to my pet peeves.

Dr. Mackay's PA saw us first and she took some pictures of Lucy's head from all different angles. Then Dr. Mackay came in and just talked to us for a while. He basically said what we already knew -- that the surgery would take place anywhere from 9-11 months old. He said they waited because the later they wait to do the surgery the less chance that she would have to have another surgery again. He was glad to hear that her genetic tests came back normal. What I think is a huge praise to God's healing in Lucy already is that he said she has a lot of midfacial retrusion and bicoronal craniosynostosis, both which are usually associated with a syndrome of some kind. But he said they can both also happen randomly, too, and it appears that in Lucy's case those two things are random (assuming the genetic test results are valid, and I am assuming they are!). But it just makes me really glad to know that she has two things that normally go along with another kind of syndrome, but she doesn't have a syndrome.

But because of the midfacial retrusion the surgery will be just a little bit more extensive than a normal craniosynostosis surgery. They will actually have to take the bone around her eye sockets and move it forward so it can match the growth of her forehead. He said he would almost overcompensate when he places the bone so for a while it will look funny until the rest of her face catches up with where it's supposed to be. But he said that it was pretty common to have to do that. He said she might have to have another surgery around her eyes when she is 7-9 years old, but that sure is a lot of time to pray and for God to answer our prayers that she won't have to have another surgery.

So the encouraging thing is that he was very reassuring -- he's been doing this since 1995, and he said he's never ever had a complication -- and he showed me a bunch of pictures of kids that he has done surgery on and they all look completely normal and you would never be able to tell they ever had anything wrong. He said that we would set a date soon for the surgery and it would probably be sometime in November or December unless Dr. Wrubel (the neurosurgeon) thought it wise to do it earlier based on her brain growth or swelling, etc. The part that's hard is that the surgery is a little more extensive and she might not look completely "normal" for a little while longer than we thought. Also, he made it sound like they would do the surgery and then it would be a lot of "wait and see" -- waiting to see how the bones in her skull fuse on their own, and if they don't they have to go back in and basically put in some artificial bone ... waiting to see if her head will conform to the shape they want it to be and if it doesn't they will have to go back in and do more surgery. So there are a lot of what if's, but I believe in a God that is in control of all the what if's and I trust that if He can form the entire world, He can certainly mold my baby's head to the correct shape (and even unfuse the sutures still if that is what He desires!).

Wesley was able to go with me and it was really nice to have him there, both emotionally and logistically (he can help carry all the stuff ... haha). I'm so glad I have such a strong and loving husband, not only just to go through life with but to go through trials with.

I'll end this post by saying that I've been reading a lot of blogs lately of other families whose children have conditions that are much more serious than anything Lucy has, and it has given me such a new outlook on my attitude. Yes, finding out that Lucy had craniosynostosis was a huge shock and it was emotional and hard and there are lots of emotions that I share in common with these other moms whose stories I am reading. But Lucy can have surgery and then it will be almost as though nothing was ever wrong. These other families are facing much more painful decisions -- like if their child will make it to her first birthday. It's amazing when I pray for them that my own problems pale in comparison and I am grateful for the smallest things that I have. It's also amazing to see their strength and humor and faith in the midst of these trials.

I joined a women's summer Bible study and it is going to be on the book of James. I started reading the first chapter to get prepared and this verse stood out to me and I will end this post with it:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." -- James 1:2-4, The Message