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ellnbel
04-07-2011, 05:16 PM
I've been trying to post this for the last 3 days, but get an error message every time! So here's giving it another go... We are 2 1/2 weeks post op for my son's surgery for left coronal cranio and I can't help but feel disappointed. He was a champ in the hospital and took everything in stride, but once we got home it was like he was an entirely different child... one we didn't know. He cries (I mean sob cries) at the drop of a hat, has become the pickiest eater (would only eat peaches for 2 weeks straight) and battles us at bedtime. I don't know what i'm going to do when he outgrows his swing, which will be any day now! He's finally starting to settle back into his regular self, which is a relief. Of course I understand what he just went through (my husband and i never left his side in the hospital) and he certainly deserves his mood swings, but I so miss my formerly happy-go-lucky baby! I hate to say this, but he's become bratty!

Now that the swelling has gone down, there is still flatness on the left side of his head. His eyes are still a bit "crooked" and his left eye still looks larger than the right eye. We did not expect perfection and were prepared accordingly, but didn't expect to see so many of the "problems" of his pre-surgery head. It pains me to think my little guy went through all of this and isn't fixed. I know the surgery was necessary and there is absolutely a vast improvement (and of course now his brain can grow normally, which is most important), but just can't shake this disappiontment. At our follow up appoitnments our NS & PS told us there is a possibility of a second surgery, but they don't even want to discuss that until they see how his head progress naturally over the next 6 months. Hopefully his brain will do its job and push that side out. Fingers crossed it all works out on its own.

Carmen77
04-07-2011, 05:26 PM
I'm so sorry momma! :hugg

Mateo became very bratty too! Its a change, but they get back to there normal selfs! It really does get better!

As far as what your noticing, maybe just give the surgery time and things might seem better!

Good luck!

jjmc123
04-07-2011, 06:32 PM
Did I write this? Sounds very similar to my son. Another cutie left coronal. One thing I've learned is that the eyes will never be 100% perfect. They can be darn close, but I know I still see the differences. Yes, my son did need a 2nd op, but for the first few months post op his head got a little worse, then it got a little better. There is still a lot of growing to be done in the head so there is still time. Unicoronal kids have it tough since there is so much asymmetry that is created. Do your best (though I know its hard) to enjoy your LO now. The suture was fixed during the surgery and if he does ever need another one, it will be a ways down the road.

As for mood differences, that is pretty normal. For my son's 2nd op he could talk and his mood issues basically came from emotional issues post op. He's worked through it. With the exception of not liking his socks off, he's his normal self again.

torichan
04-07-2011, 08:38 PM
They aren't really being bratty. They have gone through a lot of trauma, a lot of pain, a lot of fear. Being bratty makes it seem like he is trying to be bad, and he's not. He's recovering from a major surgery. He has no way to express himself. I always kept that in mind, because my daughter was a hot crying mess for about 2-3 weeks. I gave her extra love and cuddles and she got through it. Your little guy just needs some extra lovins' right now. It will get better.

As for disappointment, yep, I feel it as well. We are in a wait and see for a 2nd surgery, and like you we are hoping that as her head grows there will be improvement. It's the worst part of cranio, waiting. Hang in there. This will all get better.:comfort

beccad
04-07-2011, 08:49 PM
I couldn't have written this also. My left coronal baby girl was the same way. It was like having a new born all over again and she had to get used to everything all over again. Trust me it will get better and he will get back to normal I promise. It took Julianna a while but soon she was crawling, which she didn't do before surgery, eating and sleeping through the night again. Julianna's head has always looked off to me, everyone says that I'm the only one that notices. She is having her second surgery on April 14 and I'm a nervous wreck all over again.

Hang in there mama it will get better. Just love on him a little more.

Janet
04-07-2011, 08:51 PM
They don't know how to express themselves, and I'm sure that it has a lot to do with anxiety.....they go from their normal happy go lucky life to have major surgery, it will get better.

China
04-07-2011, 08:55 PM
I know it's hard. My babies were metopic, but Skye had both coronals fused as well. Every child is different and heal at their own pace. Give it time his brain will continue growing and maybe it will help with the shape of his head. He has gone through a lot. He should be back to himself soon.

fitmomof2ae
04-07-2011, 09:18 PM
Sending hugs! We prepare ourselves so much for the actual surgery, we often forget about the post-op challenges. It is completely normal to feel scared, worried and to question what you put your baby through. As other said, it will get better. It will take a little time. Hang in there. We'll be here for you!

janda
04-07-2011, 09:51 PM
I'd say it took a full month for my son to start acting like himself post-op. He wanted to be held constantly, only by me for about 2 weeks. It will get better!

ellnbel
04-08-2011, 09:57 AM
Thanks all, it's good to know this is all normal. Don't get me wrong, I know his moodiness/brattiness is a result of the trauma he's been through and he deserves it. i think he's also moving on to that next stage of his babyhood when all kids get more defiant, especially when you take things away from them or tell them no, so it's hard to differentiate betwen the two. We've been very patient with him, doing everything and anything we can to make him comfortable and secure, and will continue to for as long as it takes. I couldn't wait to get my hands on him when he came out of surgery and I still hold, kiss & cuddle him as often as he'll let me. I feel like I need to soak that up now before he grows out of the baby stage. He is the light of my days and makes my heart melt all the time with his big bright smile, adorable laugh and love of blowing raspberries (which he does with great gusto!)

SummerEhmann
04-08-2011, 11:37 AM
Brentley seemed like a different baby too but he was back by 2-3 weeks post op. And be patient with his head. Brentleys looks better everyday. Did the work on his eye sockets?