Jude was 8 weeks post-op as of Wednesday!
One of the hardest things I've been through in my life happened 8 weeks ago. It sometimes seems longer ago than that, probably because we jumped right back into normal life almost immediately. I'm so relieved it's all behind us. He looks like an entirely different person than he did 8-9 weeks ago. Hell, he looks completely different than he did when he was born, but we'll save that progression for his Birthday on Monday.
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| Top-view, pre-op. |
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| 8 weeks ago, the morning of his surgery. |
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| Fresh out of surgery. |
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| Top-view, 2 days post-op. |
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| 1 week post-op. |
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| 2 weeks post-op. |
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| Top view, 2 weeks. |
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| 3 weeks. |
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| 4 weeks. |
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| 6 weeks. |
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| 8 weeks! |
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| Top-view, 8 weeks. |
It has been a long, tough journey, and I'd be lying if I said it wasn't the hardest thing in my life thus far. I'd also be lying if I told you I didn't cry while gathering the pictures and writing this post. Sometimes I miss his little pointy noggin, butbI'm glad it's over with. I'm glad everything has returned to mostly normal. His scar is so normal to me that I almost forget it's there when we're out in public until someone (usually a small child) looks at him odd, and sometimes people ask. I like when people ask because then I can inform them of craniosynostosis. More times than one would expect with it being so rare and unheard of until diagnosis I run into someone who says "Oh, yeah, so and so's child had that." It's good to know we're not alone.
There's a
5k run/walk for craniosynostosis on Halloween this year. It's in New York, but my mum and I are going to make the road trip to run. We're also going to do some fundraising. It's benefiting two of the larger craniosynostosis foundations;
the Jorge Posada Foundation and
CAPPS. We'll work something awesome out for fundraising. I think our goal will be $500, that's the minimum for t-shirt sponsorship to get Jude's name on the shirts and that we're running for him.
I feared that his personality would change after the surgery from the stress of it all and all the strangers in the hospital, but it hasn't. He's one of the friendliest, most out-going babies I have ever seen. Whenever we go out anywhere he sits there and waves at anyone he sees. He starts conversations with them. He flirts with the ladies. Strangers think he's a complete doll. I'm thankful for that.
Now that that journey is over with, I'm excited to see what other journeys come our way. I hope they aren't nearly as challenging and stressful as this one has been though.
Hey Kayleigh - Just stopping by.. added your blog to my list of blogs I read from facebook and I figured I'd use your comments to ask a question. :3
ReplyDeleteI don't know much about craniosynostosis , but as you said, you like to explain it to people.
What is it? Why did Jude have to have this surgery? Is it something he would have just grown out of eventually? After all infants skulls are still so malleable up until pre-teens correct? In the pre-op surgeries I don't really see much of a problem, except maybe a large forehead? Of course, the post-swelling looks so much worse! (Almost like a little Frankenstein if I may.) However, the swelling is getting a lot better in the newer photographs but still not quiet there, correct?
Guess maybe I'm kinda like.. 'Well I remember having my eye surgery in 5th grade and being so angry my parents made me get it when I thought nothing was wrong with me ><' and low and behold my eye is wandering again and now I'm having to consider whether to consider correction again.
Craniosynostosis is the premature fusion of the skull sutures. At birth, the skull sutures are supposed to all be open to allow for brain growth, they're like floating plates. They fuse over time, but don't finish fusing until around 18-20. Jude's metopic suture was fused, it's the one at the forehead and is what caused the pinched temples and pointy forehead that he had. As a result, he didn't have a soft spot. He had to have the surgery to open the suture up so that his skull and brain can grow properly.
ReplyDeleteIf you look at the pre-op pictures, you can see how his forehead looked small and pinched, and gave his head a triangular shape instead of a round one.
All the swelling from surgery has gone down, it was actually down by about 2 or 3 weeks. The hulking Frankenstein (or caveman, as we like to call it) brow is from the surgeons over-correcting the bone to prevent it from reverting back to it's original state and he'll pretty much grow into it over the next year.
Hope that helped to answer your questions without over-answering them, I can sometimes get long-winded and over explain things. :)
Huh.. still kinda having a hard time seeing it from just the two pictures. It may be easier to see when you post that progression from birth you mentioned for his birthday. I do see the 'pinching' you were talking about on that top-down view. Looking at it some more, I can see it is extreme, but to my untrained eye still doesn't look bad. As you said though, the real problem was the growth of his brain and skull (Right?). Not having that suture open would have caused problems for sure and probably exerted pressure on the brain that was unnecessary I suppose.
ReplyDeleteGlad to hear he'll grow into the caveman brow. It's a little scary and laughable (Not in a teasing way mind you).
Thanks for answering mah question, polarbearmama. :D
Must be so hard, *I can only imagine how hard!* to go through something like that. The important part is that he is recovering and doing better and you can see that in every picture update.
ReplyDeleteHopefully, one day this will all be a distant bittersweet memory and he will have a healthy and happy development and life. *hugs* stay strong you are a wonderful momma and have a beautiful baby boy! :)