These next three weeks are going to be very, very long. Coda's total cravial vault reconstruction is scheduled for April 13, and I have mixed feelings about that. On the one hand I am relieved to finally get a date. As much as I am in no rush to lay my daughter under the surgeon's knife, waiting in limbo to find out when you can take the next step and get on with life is difficult. On the other hand, now that it's scheduled, I actually have a date and I can officially start freaking out as I count down the days to when we walk into that hospital with packed bags and pillows.
I'm not a complete stranger to the way life throws curve balls at you. I've learned you can't always dodge them, but to just take them as they come. While I may go on and on about how I don't want my daughter to have to have this surgery, and how my heart is hurting, at the same time, in the midst of it all, I know there are much worse things in life to worry about. I know she'll come out of this just fine. Some babies have had more than one of these surgeries and they're doing great! At least I am going to get to walk out of those hospital doors with my baby after all is said and done that week. I realize this, and I never forget to count my blessings.
So what's the problem then? They're going to cut my baby's head open! On purpose! This is not an endoscopic surgery (although they do offer those for some cases of cranio in newborns), this is good old fashioned Frankenstein stuff. She'll have some big old zig zag stitch running from one side of her head, across the top, and to the other side. No pretty little incision, no, this is the real deal. And they'll be entirely exposing her skull. Yeah, you think you grimaced, how do you think I feel? I happen to love that little freakin head of hers just the way it is, and if it wasn't going to interfere with her brain, I'd leave it. I'd make her custom hats.
My oldest son had surgery at 3 months for Pyloric Stenosis. My oldest daughter had to go in for several cortisone injections, while sedated, when she was a toddler (JRA). Another son had hernia surgery, along with Jay, and twice we went through tubes in the ears. Oh, a couple of stitches here and there and a few broken bones too. But none of those freaked me out as much as this experience is. I think there is a two-fold reason for this; One, that there is nothing wrong with her! With the pyloric stenosis and hernia surgeries, the sedation for the cortisone injections, and the tubes in the ears, there was an obvious problem that we were eager to get fixed. It's always hard to see your child get stuck, wired, and knocked out, especially knowing they're about to be cut by a surgeon's knife, but the others were pretty common surgeries and it was to eliminate pain. In Coda's case, she's not in any pain. As of right now (somehow, thank God), she hasn't even suffered the slightest development delay! So it almost feels like I am handing my daughter over for a very serious surgery... for nothing.
The second aspect of this surgery that creeps at me is where the surgery is going to be done. For Pete's sake, it's her head! If it was her knee, ankle, leg, ear, or any other part of her body, I think it would be easier. But her head! It's so personal, sensitive, dangerous... and it's obviously not all soft tissue. I know what kind of tools they are going to have to use... :S
All that aside, I am hanging in there. I'm not particularly nervous or worried, just really not looking forward to it. I know once it is all over she will be fine, no more worries about pressure on the brain, migraines or seizures. She'll never remember the ordeal and her scar will fade and be covered by hair. But in the meantime, I am going to go through my moments where this all feels unreal. Who ever heard of "Craniosynostosis" anyway? You hear about these kids who have to have surgeries for all these different things, but you never, ever imagine it might one day be your child who is being pulled around that hospital in a wagon hooked up to an iv. But here again, when I am feeling sad or anxious, I also keep in perspective that at least there's no radiation or chemo running through her veins and she will be walking out of that hospital on her own two legs (well, Jay will probably carry her to the car, but you get the point).
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Craniosynostosis; The Beginning
When Dakota was being born, she hung out for a while in the birth canal. She was presenting forehead first, a very difficult position to birth a baby in. When she was finally out, her head had an odd shape to it. The OB said it would round out, and sure, that happens.
But month after month her head looked more odd, if anything. It was growing long and narrow. I mentioned it to our pediatrician twice as the months passed, but she was not worried about it, so I tried not to be. Finally, at ten months, I mentioned it again, and she sent us to MCG Children's Hospital for testing.
In the meantime, always liking to be prepared, I had done some research on the internet about odd shaped baby heads. What I found out was that she may need to wear a correcting helmet for a year or two. Well that sucked and I shed a tear or two. Who wants their baby in a helmet 23 hours a day? People will stare, think she's handicapped, it will be in all her baby pictures.
At MCG we saw a neurologist. He felt her head, mentioned something called "craniosynostosis", and sent us for a CT scan. For this they laid her down on a stretcher on rollers that slide into the machine. The technician had a lot of patience, and wrapped Coda in a big sheet to immobilize her. It did not hurt in any way, but it was heart wrenching to see and hear her scream in fear as they rolled her in. They played a little light show inside to try and keep her attention, I've heard it works for some kids, but it did not amuse Coda in the slightest, lol.
The whole thing only took, literally, a couple of minutes, so I suppose it wasn't too bad. But yikes, when your kid looks at you with that fear, tears streaming down their face, while you stand there and just watch as strangers handle your baby... you know the kids are thinking, "Save me Mommy! Hold me! Take me away!", and you're helpless to help. Sigh. But as we got back into the van in the parking garage, Jay and I looked at each other and breathed a sigh a sigh of relief. The neurosurgeon had not mentioned anything about a helmet, whew. I kinda of had that, "I just ~knew~ nothing could be wrong :)" feeling.
Early the next morning Jay and I were sitting at the computer looking up this "Craniosynostosis" stuff. What we saw scared us cold. Surgery was used to correct it. But, the neurologist would have said something if she needed surgery, right? As we were discussing this, the phone rang. Jay's face went all serious as the person on the other line was talking. I nudged him and gestured, "who? what?", but he was stone faced and mostly silent. My blood started running cold. I started hearing things like, "I understand" (and Jay is never this easily agreeable with any strange callers, lol), "Are you sure?", "... surgery... ", "MRI", "sedation"... WHOA! NOWAY! It can't be what it sounds like, noooo......
I felt like ice. Time stood still for just a moment, and then I was suddenly in some Twilight Zone-ish parallel universe. Because in the normal universe, the one I was just yanked from, my baby doesn't have anything wrong with her skull, and definitely doesn't really need something like surgery, especially cranial surgery! In the universe I am used to, I don't have these feelings of utter helplessness and I don't have to ever prepare for things like handing over my perfect, beautiful, 13 month old baby girl to a surgeon who is going to cut open her skull and take it apart.......
......... there is no word that could sufficiently capture some of my emotions right now..........
For the MRI we had to be at the hospital early so that they could sedate her. MCG is set up really nice, with large comfortable waiting areas, wagons for the kids, and helpful staff. We weren't made to wait very long and a nurse applied a topical numbing cream and covered it with clear tape, but Coda kept picking at it. She doesn't like her hands to be dirty or sticky and apparently she doesn't like stickers or band aids on them either, lol.
When it came time for them to take her into a room to place the IV in, I was weak. I asked Jay if he could do it, and he did. With Emily! She just adores her baby sister and wanted to be a part of this as much as she could be. I am so proud of her. I heard Coda crying when they must have been trying to hold her down, then of course the big screams when the needle went in. My poor baby.
When Jay walked out with her and I saw the iv stick hanging out of her hand, I felt so bad. She looked so scared. She put her head down in Jay's chest and didn't want to be let go of. We had a few minutes with her to comfort her and let her play and calm down. Then we had to decide who was going with her for the MRI. I told Jay to go. He was having a hard time letting go of her and I was having a hard time watching them do things to her, so I went to wait in one of the waiting rooms for a while. The couches aren't too bad, but I think the hospital should put in Laz-z-Boys.
Jay texted me to let me know when they were done and I could go see her in the recovery room. How sad to see her sprawled out on the bed. At least the iv was out of her hand. I stroked her face and gave her kisses until she woke up. When she finally did, about ten minutes later, she was groggy, but happy enough. No laughing, but little smiles and then we were ready to go home.
It was only a day or two later that I had an appointment with the pediatric plastic surgeon. He showed me the CT scans and where Dakota's skull was fused along the sagittal suture, which is the suture that runs from from the top front of the head, to the back. Babies are supposed to have soft skulls and open suture lines around and across their head to allow for proper growth of the skull and brain. If this is left untreated, the head will continue to grow in it's odd shape and could result in pressure on the eyes and blindness, or even mental retardation. So while there is nothing wrong with her developmentally, there could be as she grows. So Dr. Yu explained to me how he can take out, reshape, and fill in the skull while the neurosurgeon does the surgery.
A few days later we saw the neurosurgeon, Dr. Macomson. He was as nice as Dr. Yu and they both did make me feel as comfortable as I guess you can in a situation like this. He felt her head and looked at her MRI scan. He was surprised that she hadn't had any delays. She walks, she imitates, she has no problem grasping things, etc. Good news I guess. Thank God for that, I know not all kids are that lucky. But her future lays unclear and so we go home to prepare ourselves for our baby to be scheduled for an 8 hour open cranial vault reconstruction.
But month after month her head looked more odd, if anything. It was growing long and narrow. I mentioned it to our pediatrician twice as the months passed, but she was not worried about it, so I tried not to be. Finally, at ten months, I mentioned it again, and she sent us to MCG Children's Hospital for testing.
In the meantime, always liking to be prepared, I had done some research on the internet about odd shaped baby heads. What I found out was that she may need to wear a correcting helmet for a year or two. Well that sucked and I shed a tear or two. Who wants their baby in a helmet 23 hours a day? People will stare, think she's handicapped, it will be in all her baby pictures.
At MCG we saw a neurologist. He felt her head, mentioned something called "craniosynostosis", and sent us for a CT scan. For this they laid her down on a stretcher on rollers that slide into the machine. The technician had a lot of patience, and wrapped Coda in a big sheet to immobilize her. It did not hurt in any way, but it was heart wrenching to see and hear her scream in fear as they rolled her in. They played a little light show inside to try and keep her attention, I've heard it works for some kids, but it did not amuse Coda in the slightest, lol.
The whole thing only took, literally, a couple of minutes, so I suppose it wasn't too bad. But yikes, when your kid looks at you with that fear, tears streaming down their face, while you stand there and just watch as strangers handle your baby... you know the kids are thinking, "Save me Mommy! Hold me! Take me away!", and you're helpless to help. Sigh. But as we got back into the van in the parking garage, Jay and I looked at each other and breathed a sigh a sigh of relief. The neurosurgeon had not mentioned anything about a helmet, whew. I kinda of had that, "I just ~knew~ nothing could be wrong :)" feeling.
Early the next morning Jay and I were sitting at the computer looking up this "Craniosynostosis" stuff. What we saw scared us cold. Surgery was used to correct it. But, the neurologist would have said something if she needed surgery, right? As we were discussing this, the phone rang. Jay's face went all serious as the person on the other line was talking. I nudged him and gestured, "who? what?", but he was stone faced and mostly silent. My blood started running cold. I started hearing things like, "I understand" (and Jay is never this easily agreeable with any strange callers, lol), "Are you sure?", "... surgery... ", "MRI", "sedation"... WHOA! NOWAY! It can't be what it sounds like, noooo......
I felt like ice. Time stood still for just a moment, and then I was suddenly in some Twilight Zone-ish parallel universe. Because in the normal universe, the one I was just yanked from, my baby doesn't have anything wrong with her skull, and definitely doesn't really need something like surgery, especially cranial surgery! In the universe I am used to, I don't have these feelings of utter helplessness and I don't have to ever prepare for things like handing over my perfect, beautiful, 13 month old baby girl to a surgeon who is going to cut open her skull and take it apart.......
......... there is no word that could sufficiently capture some of my emotions right now..........
For the MRI we had to be at the hospital early so that they could sedate her. MCG is set up really nice, with large comfortable waiting areas, wagons for the kids, and helpful staff. We weren't made to wait very long and a nurse applied a topical numbing cream and covered it with clear tape, but Coda kept picking at it. She doesn't like her hands to be dirty or sticky and apparently she doesn't like stickers or band aids on them either, lol.
When it came time for them to take her into a room to place the IV in, I was weak. I asked Jay if he could do it, and he did. With Emily! She just adores her baby sister and wanted to be a part of this as much as she could be. I am so proud of her. I heard Coda crying when they must have been trying to hold her down, then of course the big screams when the needle went in. My poor baby.
When Jay walked out with her and I saw the iv stick hanging out of her hand, I felt so bad. She looked so scared. She put her head down in Jay's chest and didn't want to be let go of. We had a few minutes with her to comfort her and let her play and calm down. Then we had to decide who was going with her for the MRI. I told Jay to go. He was having a hard time letting go of her and I was having a hard time watching them do things to her, so I went to wait in one of the waiting rooms for a while. The couches aren't too bad, but I think the hospital should put in Laz-z-Boys.
Jay texted me to let me know when they were done and I could go see her in the recovery room. How sad to see her sprawled out on the bed. At least the iv was out of her hand. I stroked her face and gave her kisses until she woke up. When she finally did, about ten minutes later, she was groggy, but happy enough. No laughing, but little smiles and then we were ready to go home.
It was only a day or two later that I had an appointment with the pediatric plastic surgeon. He showed me the CT scans and where Dakota's skull was fused along the sagittal suture, which is the suture that runs from from the top front of the head, to the back. Babies are supposed to have soft skulls and open suture lines around and across their head to allow for proper growth of the skull and brain. If this is left untreated, the head will continue to grow in it's odd shape and could result in pressure on the eyes and blindness, or even mental retardation. So while there is nothing wrong with her developmentally, there could be as she grows. So Dr. Yu explained to me how he can take out, reshape, and fill in the skull while the neurosurgeon does the surgery.
A few days later we saw the neurosurgeon, Dr. Macomson. He was as nice as Dr. Yu and they both did make me feel as comfortable as I guess you can in a situation like this. He felt her head and looked at her MRI scan. He was surprised that she hadn't had any delays. She walks, she imitates, she has no problem grasping things, etc. Good news I guess. Thank God for that, I know not all kids are that lucky. But her future lays unclear and so we go home to prepare ourselves for our baby to be scheduled for an 8 hour open cranial vault reconstruction.
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