It’s now been over a month since Katie’s surgery. Her scar is fading to that pinkish stage where you know it’s a scar, but it’s not as vivid and bloody as it used to look. She’s acting very much like herself. She has one more clearing check with her neurosurgeon and then she’s free for a year. So, it seems like a good time to talk about the things they don’t tell you about surgery for trigonocephaly. Now, I don’t know how many of these are idiosyncratic to Katie and how many are things that every child would go through, but these are the things no one warned us about.
1) No matter how carefully you plan, something is bound to mess you up the day before the surgery. In our case, it was the fact that Katie hadn’t slept in her pack-n-play without the bassinet before. She had no idea how to go to sleep in it and in a strange room, to boot. I spent a lot of time walking and trying to calm her before she, literally, fell asleep on me.
2) You will very likely have to hand your screaming child to someone you’ve never even met. Now, realistically, I knew this was likely to happen, but I think it would be nice if nurses at least introduced themselves before holding their arms out for a child who is clearly clinging to mom for all she is worth.
3) You will very likely not recognize your baby when she comes out of the recovery room headed for the ICU. Katie had a full head of hair and a pointy forehead the last time I saw her. She was completely bald and smooth headed when she came out. Had she not had her turtle with her, I wouldn’t have known it was her. I’m embarrassed to admit that, but there it is.
4) There will come a point when someone hands you a bag, you look down and realize that you’re holding your daughter’s entire head of hair in your hand. No one will think less of you if you vomit shortly thereafter.
5) Your child will not be alert or even know you’re there for the first 24 hours post-surgery. As the nurse told us, she was fine; she was stable, go get sleep, you’re going to need it. I didn’t really believe her, but we left, got sleep, and then didn’t sleep again for a week. She was right.
6) Your child will have a drain in his/her head that looks somewhat Klingon-esque. For the first two days post-op, the drain snaked across the length of Katie’s head and it gave her a ridge right on top. I was afraid to ask questions, but I should have. I would have been relieved to know that it was just the tube for the drain and not a permanent feature of her head. So, the lesson here — ask questions, lots of them.
7) No matter how prepared you think you are for the swelling, you’re not prepared for it. When the eyes are swollen shut, bruised looking, and her whole head seems to weigh more than her body, you will feel utterly helpless. You are helpless. The only things you can do are talk until you are hoarse, and be a human teddy bear when she’s ready for one.
8) No one knows your child better than you do. Do not let well-meaning nurses convince you of things that you know are not true for your specific child. We could have spared Katie some significant anguish if we had held fast.
9) When you can pick your child up, you will likely not be able to put her down again. Katie refused to be set down once we could pick her up. No amount of anything would calm her except being held by mom or dad.
10) They will tell you to bring solids for your child. You likely won’t need them. Katie didn’t eat solid food until her second or third day home. Your child will likely lose weight in the hospital. This is why they want them healthy and heavy when they come in. Don’t worry, the appetite will come back.
11) Your child will not roll over, sit up, stand, laugh, or crawl for several days post op. I don’t know what creates the skill deficit, and I don’t know if it is true for every single child who has this surgery, but Katie was rendered virtually helpless for almost a week. In the hospital this is not as noticeable as it is once you return home. Once home, Katie could not roll over on her own, sit up on her own, or anything else. She was frustrated, upset, and in need of constant reassurance.
12) Even if you don’t believe in attachment parenting, even if you’ve never had a baby carrier, you will need one once you are home. Katie was in her Ergo practically non-stop for four days. I have never been more grateful to a company in my life than I am to Ergo. If you’re in the market for a good baby carrier, check them out. You simply can’t go wrong with one and it’s invaluable when the baby will NOT be put down. *
13) No matter how well you’ve prepared the siblings, they are not ready for this. We had talked and talked with Ben about the surgery. Explained what would happen to Katie. Discussed how careful he would need to be with her post-surgery. And still, the look on his face when he came running in to see his favorite sister (also, his only sister) is burned into my brain. I will never forget the look of stark terror. It shattered my heart.
14) Zip up sleepers are your very best friend in the whole world. Once you see your baby’s head, you will not want to pull ANYTHING over it. No matter what.
15) The glue they use to attach steri-strips should be used for space shuttle repair. It sticks far better than anything NASA uses. And it will tear a strip from your heart when the doctor has to remove those strips.
16) About a month out, the worst will be over. The hair will be coming back. Your baby will have faith that not every stranger is out to hurt her, and she will trust you again, but it takes time and that time is heart rending.
edited to add: You will need to buy some pajamas that are tops and bottoms and bring socks with you for the baby. Once out of surgery, they get very, very cold; socks and the leggings part of the pajamas keep them warmer.
* I paid full price a year ago for my Ergo baby carrier. I did receive some little bag things from them as a thank you for a testimonial I wrote for them based on our experience with the Ergo after Katie’s surgery. Otherwise, there’s no relationship here and I make NOTHING from tell you that hands down, the best baby carrier there is.
Hugs to you all. Any serious medical procedure is so scary when it’s YOUR child – this sounds terrifying. I am so glad you are on your way out of what I hope was the worst of it…
We are hopefully on the way out. There are two options with this condition. One is one surgery and you’re finished. The other is, if the defects they created to fix the existing defect don’t repair themselves, she’s facing a second surgery between five and six years old. We’ll hope that doesn’t happen.
Thank you for writing about this. I’m sure it wasn’t easy, but I know it will help families facing this or a similar procedure.
#4 still blows my mind. I’m more of a screamer than an up-chucker, but this seems entirely out of the blue. I guess there are people who would want this, but maybe it should be an opt-in situation rather than the default.
The thing about #4 is that, when I think back on it, Dr. R warned us that he just gave us the whole thing, but I guess I didn’t understand what he meant. I’m not sure what P did with it. I haven’t seen it since he passed it to me. They were handing him things, he was passing without looking, and I looked. Sigh.
I hope it helps. I’m trying to decide if a couple of pictures are necessary. I feel like those are Katie’s, but at the same time, she doesn’t look like she did while she was swollen, so maybe I should. I’m thinking about it.
Of course, first I would have to figure out how to put pictures in my blog, but that’s a whole other issue :).