"What I wish I knew"

[xl1200c]

I was reading in another forum and they had 2 particularly interesting threads about surgery.

What I wish I knew: http://www.cappskids.org/board/showthread.php?s=&threadid=4592

and

Things I didn't know: http://www.cappskids.org/board/showthread.php?s=&threadid=6002

For the moms here at CranioKids who are on the other side, what did you wish that you knew, or what didn't you expect about the surgery?

Thanks,

[Janet]

I wish that I would of listen to the parents on here that said their children did great and bounced back fast. I was so worried about what could happen to her I didn't want to listen to anyone even though everyone said that she would be fine.
Also bring cans of soup or cup o' soup...easy stuff to eat, and ask for help when you need it, cry when you need to and don't feel guilty about it, I still cry when I think about everything. David will do great and so will you....can't wait until you're on the other side. :hugg

[Lauren]

I wish that I would of listen to the parents on here that said their children did great and bounced back fast. I was so worried about what could happen to her I didn't want to listen to anyone even though everyone said that she would be fine.

:lol You're not supposed to listen to us silly! That's part of this whole process. You are to think that we are all off our rocker when we tell you that you will be amazed. I think it's so we can feel that huge sense of relief when it's over. The quote that I got was "you aren't going to believe me, and that's okay, you aren't supposed to." That was before CK and when CAPPS was only a yahoo group so it wasn't as busy. I actually had to call Canada to talk to someone because there just wasn't enough info out there yet.

The rest of my response is in the thread. I think I'm the second or third poster.

[melsch]

I wish I had been prepared for my little guy to be awake upon immediately reaching the PICU. I was positive they would have him in some sort of drug induced coma and instead he was awake and not at all happy. As his mom, I knew that all he wanted was food, but I also knew it was too soon. THe minute he got his grub, he settled down and was out for the night.
One thing I am proud of and grateful to have done was leave him for one night in the PICU to return to our hotel for some sleep. I knew it was the only time he would have one on one nursing support, and my last time to get some quite sleep. It was the hardest thing I have ever done, but I was so glad we did, since the next night we had an 11 year old roomate on the regular ward, that was not nearly as well behaved as my 3 month old!!

And lastly, I wish I too had an incling that the recovery was so easy. I was petrified of the post-op scenario. Luckily, I was shocked and awed by how smart everyone on this site was and how quickly Logan healed!

[charliesmummy]

I think i read on this site that someone took a third person with them who was very close to them so if they wanted to leave the baby to go for a nap or food they still had a familiar face around for them. I thought this was a brilliant idea so we took Charlies Auntie & i couldnt have coped without her

[Janet]

Lauren...it's so true what you said...I thought you guys were off your rocker. :lol

I was lucky, Fiona did not wake up until after she got out of the PICU...she basically slept for 3 days straight. I hope David does the same. :hugg

[Koops]

I sort of wish I knew how swollen Bailey's head would be...but then again I think I may have reconsidered! Plus I suppose all the babies are different and the docs can't say they will all have the same amount of swelling. Our friends that had the op a week before deliberately didn't show me her son's head as she said afterwards that she was worried for me and my reaction.
My husband and I also stayed in a motel when Bailey was in ICU for the first night and this extra sleep helped for the next week or so as we didn't get much after that! Although at the time I felt a bit bad (and rang every couple of hours) I am thankful that the nurses pushed us to go.

[sky16cb]

I wish I had been prepared for my little guy to be awake upon immediately reaching the PICU. I was positive they would have him in some sort of drug induced coma and instead he was awake and not at all happy. As his mom, I knew that all he wanted was food, but I also knew it was too soon. THe minute he got his grub, he settled down and was out for the night.
One thing I am proud of and grateful to have done was leave him for one night in the PICU to return to our hotel for some sleep. I knew it was the only time he would have one on one nursing support, and my last time to get some quite sleep. It was the hardest thing I have ever done, but I was so glad we did, since the next night we had an 11 year old roomate on the regular ward, that was not nearly as well behaved as my 3 month old!!

And lastly, I wish I too had an incling that the recovery was so easy. I was petrified of the post-op scenario. Luckily, I was shocked and awed by how smart everyone on this site was and how quickly Logan healed!

I agree with you. When we reached the PICU I was ready to see her sleeping not awake. when I first reached the floor you chould hear this baby cry and I told my husband oh someone is not happy. i didn't think it was my little one. And then we reached her room and saw it was her that's when i lost it and broke down.
i had hard time leaving to get some sleep that night. But they told me the first night you should try to get some sleep. And I have to say that was the best thing I chould have done. The next day I felt ready to take on the world.

[KelRob]

My daughter had CVR on October 21 for metopic craniosynostosis. This topic was VERY helpful in preparing my family and I for the surgery. It is a terrible experience but it helped knowing what other people had been through. One thing that we weren't prepare for was getting to know her "new look". Even though she looked "better" than before, she was still different. I was a little sad for a few days because she looked different and acted different (just for a few days). We eventually got use to her changed appearance and now its like she has always been that way. However, when we look back at pictures, we can't believe the difference and I still feel a little sad sometimes, that I miss my little girl's old face...even with the imperfections.

[Janet]

My daughter had CVR on October 21 for metopic craniosynostosis. This topic was VERY helpful in preparing my family and I for the surgery. It is a terrible experience but it helped knowing what other people had been through. One thing that we weren't prepare for was getting to know her "new look". Even though she looked "better" than before, she was still different. I was a little sad for a few days because she looked different and acted different (just for a few days). We eventually got use to her changed appearance and now its like she has always been that way. However, when we look back at pictures, we can't believe the difference and I still feel a little sad sometimes, that I miss my little girl's old face...even with the imperfections.


I think a lot of people feel the same way as you. That's why I keep picture on my desk of before/after the surgery. It remindes me. We also have pictures of her all over the house of before the surgery. To all the Mom's and Dad's that have not had the surgery yet......take a ton of before pictures!! http://www.craniokids.org/support/images/icons/icon12.gif

[Tawnia]

I wish I had held her sooner and more. I was so worried about hurting her I didn't pick her up for the longest time. Once I did I realized how much more comforted she felt and I felt guilty I hadn't held her more.

[Janet]

I wish I had held her sooner and more. I was so worried about hurting her I didn't pick her up for the longest time. Once I did I realized how much more comforted she felt and I felt guilty I hadn't held her more.

Me too http://www.craniokids.org/support/images/icons/icon9.gif that is my biggest regret, I was afraid of all the tubes being ripped out and I though it would hurt her by picking her up.