What I wish I would have known before surgery

[three.little.boys]

There was a GREAT thread I read before Q went for surgery and I can't find it now...It was SO helpful in getting me mentally, physically and emotionally ready for his surgery.

So...I think we should start a new thread for all those anxiously waiting surgery...here goes.

"What I wish I would have known before surgery""

~No matter HOW many photos I see of other swollen babies it is totally different seeing MY baby swollen like that! Even though I had been told this many times, I did not believe it and thought I was prepared. BELIEVE IT...IT IS TRUE!!

~Don't over pack...I lugged a million shirts with me b/c I was afraid that Quintin would puke a lot. He never puked and I only used 4 of the 15 shirts I packed!!

~Handing Quintin over WAS NOT the hardest thing to do (as I though it was going to be) WAITING for surgery was actually the hardest part. I was relieved to hand him over and get it done with!

~I didn't realize how tough it was to have Quintin's eyes shut for 3 days. All the photos I see of babies with their eyes swollen shut make them look so "peacefull" when actually they are SO frusterated. I learned to use my voice all the time and to constantly talk to Quintin so he could hear where I was at all times since he could not see me.

~I just happened to have Amy's phone number with me (little Camden's mom)...who had surgery at the same place with Dr. Fearon 5 weeks prior. It was so nice to be able to call her during surgery to confirm if all of my feelings were normal and to ask questions. Try to have one or two craniomom's phone numbers with you. I will offer mine to anyone who wants it...just send me a PM.

~I also did not realize how "jumpy" Quintin would be for a week or so after surgery. He basically had to regain trust in us that he wouldn't be hurt anymore. He had been poked and prodded and had IV's flushed and ripped out for 3 days all while his eyes were swollen shut. Therefore, he never knew if the next touch was going to be a good one or a painfull one since he could not see. Even after his eyes opened, he wuld fuss with the slightest touch...even changing diapers. But, a week of very gentle handling reassured that the pain was over!!

~Yes...it IS normal to think, "Man...am I ever going to have "my baby" back???" and yes...you will!!! I promise!!

~Yes..it IS normal to think that perhaps the operation was a mistake right after surgery...and maybe into the first post-op weeks. I promise...you will change your mind and it is worth it!!

~I never knew HOW GOOD that first peek would feel once I looked down and saw Quinny's beautiful eyes looking back at me...then the first smile happened shortly after.


OK- now all of you mommy's on the other side, please share what you wished you would have known before surgery!

[Tawnia]

Sadie - so true!

I would also like to add...

- Don't forget to think about YOURSELF! You need to make sure you eat, sleep, change and shower if you want to be able to be there for your baby

- Just because their eyes are swollen shut doesn't mean they are any different! Bring their favourite toys with familiar touches, smells and sounds. They are comforting.

- (especially for metopics) THEIR EYES WILL BE THE SAME SHAPE AGAIN!!!!!! It took MONTHS for Azia's big round eyes to come back and I had resigned myself that they were lost forever but they DO COME BACK!!!

- The swelling takes months to fully go away. Yes it does. Yes it looks like he/she is no longer swollen at 3 weeks but take a picture and look again in another month and you will see!

- Sleep will be disrupted. Yes it WILL! But it will go back to normal eventually!!!

[three.little.boys]

Good ones, Tawnia. The last thee even helped me 4 weeks post-op!!

[xl1200c]

I love this topic. Preparation helped me so much. I had done a thread like this just before David's surgery and I had referenced a few lists I had seen on another board. That previous thread is here if anyone cares to revisit it:

http://www.craniokids.org/support/showthread.php?t=2313

[mattricia]

Great thread, Sadie. Let's bring it up again in a month, too! Or maybe one of the administrators can move it to the top as a permanent thread??? That would be neat.

I've put surgery to the back of my mind again, as we have more than five weeks to wait... I can't keep it in the forefront for that long. I'll go crazy or just get angry again!

[Janet]

All babies are different..it's great reading all the different stories and knowing what other families have gone through, but realize that your baby is different...I got so freaked out when Fiona's scar didn't heal as fast as all the other children on here. So that's my advice, know that some children heal faster then others.

[Christina's_Mommy]

You two hit the nail on the head. I have felt nearly all of those. I remember when Christina's eyes will still swollen, I felt like I had an overgrown newborn and in a sense was greving the old Christina. She at times is still clingy but it is getting better. She was super clingy just after surgery for a few days. Occasionally she has been getting up in the middle of the night but as soon as she sees me, she goes right back to sleep. Some of that could be developmentally normal also but those are just my observations.

btw, as far as the first smile thing again after surgery, it feels like deja voo with going through the "first's" again.

[Candice]

DON'T BE SCARED TO HOLD YOUR CHILD!!!!!! I know we are scared to hurt them, but they need us to hold them, and carry on like nothing is wrong...it helps them heal faster and regain their confidence and trust. The day after Kendall's surgery, in the morning, we still hadn't held her, we were SO SCARED! Kendall's Nurse Practioner, Jane, popped in for a visit, picked her up out of the crib, gave her kisses and plopped her in my arms. I WAS TERRIFIED!!!!! After that, we were holding her whenever we could, and we actually took LOTS of walks around the floor, (the nurses were kind enough to disconnect her from her iv's for a moment) and even visited another sagittal baby who had surgery the day after Kendall. We also got one of the wagons, and made her a little bed in there so could cruise around the entire hospital. We took her to lunch with us in the caf, and even took her outside to eat breakfast with us one day. IT WAS WONDERFUL!! Here are a few pics of our adventures!!!!

[Janet]

I agree with you Candice....I didn't hold Fiona for almost 2 days....do you know how guilty I feel about that. I wish I could have done that part over again.

[mattricia]

Aww...you live and learn, Janet. Fear can be immobilizing. Thanks for sharing to help the rest of us though.