This post is a continuation of my previous post discussing Andie’s medical situation so if you haven’t read that yet, you can find it here.
We had Andie’s follow-up appointment with the plastic surgeon the same day as the CT scan just later in the day. I was actually feeling pretty optimistic going in to the appointment but I think most of that was just feeling relieved that Andie did so well with everything that morning. Our doctor met us and spoke to us for a minute or so before he asked us to follow him into another room with computers so we could actually see the scan. As soon as I saw the screen, my heart just dropped. Sure enough, that right coronal suture was completely fused like the doctor had suspected. You could see all of the other sutures but that entire right side was just one big piece of bone. Ugh. I looked at Daniel and I could tell he was feeling the same way I was.
At that point it was clear that surgery was definitely going to happen so that’s what we talked to our doctor about for the rest of the appointment. We asked him several questions about the procedure, etc. and then he scheduled us to meet with the clinical coordinator for the craniofacial department. We also got an appointment to meet with the neurosurgeon who would be part of the procedure as well. I couldn’t help but cry on the way home. The thought of my sweet little girl having to undergo major surgery was and is so overwhelming for me. I’m scared! Never in a million years did I think we’d be faced with this as a family but here we are.
On that following Monday we met with the neurosurgeon and he did make us feel better about the procedure itself. He reminded us that they were only working on the bone–nothing else–and that’s hard to remember when you think of surgery involving the head. For some reason, at least for me, my mind goes immediately to the brain, but the brain will not be touched at all. He also told us that he considers this one of the safest procedures he does–even said that there was less than .1% of any complications. We were also told that this surgery center has one of the lowest infection rates in the entire country. Those facts really gave us the ability to breathe a little – we’re still both scared despite our confidence in these doctors as well as the hospital just because it’s our little baby but hearing those things was so helpful to us. The doctor also made sure to tell us that yes, Andie definitely needs this surgery because like our plastic surgeon told us, if we didn’t it would further affect her appearance as well as affect her vision in her right eye.
Right after speaking with the neurosurgeon, we met with the clinical coordinator and she was able to answer some more of our questions. She also had a little book with pictures of a couple of other little ones who had the same procedure–they showed before and after photos including recovery and later on down the road. We’ve seen similar photos while looking online so I knew what to expect but it still didn’t stop my heart from breaking seeing those little babies with their heads wrapped and so swollen that they can’t open their eyes. 😦 I know it’s temporary but it still sucks. She also put us in touch with some other local families who recently went through everything we are presently and I’ve spoken to one mother already! So helpful because truly, they are the only ones who will ever really understand.
As of now, Andie’s surgery has been scheduled for June 4. We thought it would be earlier but they couldn’t get the doctors scheduled together any sooner although things could always change. The good thing is, Andie’s case is not urgent so the wait is fine in that sense. One thing Daniel said was that he’s so glad we never had to be faced with a decision as to whether we should do the surgery or not. I completely agree! Surgery is the only way Andie’s condition (right coronal craniosynostosis) can be corrected and it must be corrected if we want Andie’s appearance to be the way its supposed to be as well as prevent any negative effects on her vision and eventually, pressure on her brain. This is why the concept of getting a second opinion never even entered our mind. No matter where we might go, they would all tell us the exact same thing. I’m grateful Andie doesn’t have a condition with a million different treatment options or something that is something of a mystery to doctors–I don’t know how parents of children with conditions/illnesses like that navigate it all. Prayers for them! In addition, we luckily live very close to one of the best children’s hospitals with doctors that specialize in this area. I’ve never been happier that we live where we do!
We can expect to be in the hospital anywhere from 3 – 5 days after surgery, which will happen early in the morning on the 4th. We are able to stay with her 24/7 which is great because I have no plans to leave her at any point. She will not be swollen right away but that will set in and last about 3 days before she’ll be able to open her eyes. I think not being able to see will really bother her but I’m hoping it won’t cause her as much anxiety as I think it will. Pretty much everything about that day and the recovery is causing my a lot of anxiety but that’s how any parent would feel!
I’m terrified to hand over my daughter to the hospital staff and be separated for 6 hours+
seeing her hooked up to machines
seeing her head all wrapped up and her poor little face so swollen she can’t open her eyes
thinking about how she will have no idea why she can’t see or why she’s uncomfortable
how well she’ll eat during the recovery days in the hospital
i’m just scared.
Going through this makes me think of all the kids at this hospital and all over the world who are suffering from things so much worse. My baby will be fixed after this surgery and for that I am thankful but there are so many kids who have to endure so much more and it breaks my heart. I can’t understand why any child should have to go through anything at all–all they should experience is happiness, health, love…the very best of the very best. So if I ask you for anything, it’s to please pray your absolute hardest for all the children in this world who unfairly have to endure things they should never have to.