How do/did you get through it?

[stina101803]

This is an awesome site for support and encouragement, but my brain can't help going crazy after a while with information overload! Everyone's stories and pictures, and as I'm reviewing them, my mind reverts back to my little girl who's going into surgery in September.
I keep rehearsing over and over in my mind how Lilah's surgery play out, and also thinking what mental state my husband and I will be in during the operation. It's enough to make me go insane just thinking about my little girl on an operating table and what she'll look like in recovery!
I'm sorry to be so honest, but as the date draws near, I can't help to think these thoughts. So, how do/did all of you deal with the days leading up to surgeries and what the heck did you do during the surgeries?! I just feel like I'm slowly becoming a basket case and at any moment I'm going to lose it. :crazy

[dannlark]

Christina, I'm not sure if I've welcomed you officially so if noi, WELCOME!! This place is an insanity saver. I'm sorry that your little one needs the operation, but know that she'll do wonderfully and you'll be on the other side soon.

As for all those feelings, my DH and I are in the same boat. Our son's surgery is on August 27th and just last night DH said, "Don't you wish we could just fast forward to surgery day?" I TOTALLY feel like that!!!! Not that I'm not scared about the operation, it's just the waiting and your mind just mulling and mulling and mulling the whole thing over. I can't sleep without having a cranio related dream and my every waking hour is spent in some way obsessing about it. Know that you are completely NORMAL for having all these feelings. It's your beautiful little girl that you are intrusting to a Dr. to fix her and give her back better than new... It's a whopper of a doozy of a whopper... I can't WAIT until we are on the other side and home, safe and sound with our little boy... As for what to do during the surgery, I hope someone can answer that question for you...I'd love to know too. My DH wants to pop some sleep aide and wake up when the nightmare is over...poor dear...I'm sure he'll be stronger than he thinks he can be when it's all happening though. I'm hoping one of these wonderful Ladies here that live in TX will come and bide the time with me. I know I'll need major distractions. (((HUGS))) We can do this... We're Super Mommies!!!!

[beccad]

I know what you mean by it all being so overwhelming and such an information overload. I felt the same way and I had to step back for a while and let my brain process it all. Finally I just quit researching it all and just enjoyed the everyday conversation that goes on around here. I got to know some people really well and that helped me out a lot. Now being on the other side of this journey I realize how prepared I was for that day. Don't get me wrong though I had a major meltdown once I was in the waiting room after they took her back. I think that was just all of my emotions finally hitting the surface. I also was emotional when I saw her for the first time. I had seen all of those pictures and read all of the stories but nothing can really prepare you for seeing your child lying there. That was really hard for me as I'm sure for every other parent here too. I found that I was stronger than I realized and I knew that I had so many people praying for us that day. I also knew that everyone here were with me that day in thought and prayers and they had been where I was and that was comforting. You can get through this and yes it is hard and you have every right to feel the way you do right now. We are all here for you and I'm praying for you and your family as you go through this.

[dnholst867]

It is a very overwhelming time and there is SOOO much information to take in. We decided instead of researching and reading about it day after day, to enjoy the days / weeks leading up to surgery. We talked about our worries and found the information we NEEDED to know and left it at that. We did various things with Zach ... went to the zoo, went to parks , things that were inexpensive but things that he would enjoy . We also spent ALOT of time with family and friends and that helped us take our mind off of things. As far as the day of surgery, yes there is a lot of anxiety and handing Zach over was difficult but he left with a smile on his face. We had family and friends with us, they kept our attention off of the matter at hand. it was actually fun to reminsce, it made the time go by faster. No matter how hard you try to prepare yourself its something that is VERY hard and its going to break your heart but you have to remember that it truely is whats best for your child. We will all be praying for you and your family. God will be with you that day and you will have more strength than you thought you could ever have. Good Luck!

[mattricia]

Hi Christina. How new are you to the cranioworld? I think that question has a lot to do with how to answer your question. For me, at first, i immersed myself in research and sought answers to my questions. I remember one day, just sitting in the chair, holding Jack, staring into space. I wanted to get up, but i was so depressed, i couldn't will myself to move. It was all i could think about for a long time, and i worried constantly, but then i think i just couldn't continue living in that heightened state of worry. So after the initial information-seeking stage, it sort of went to the backburner, until we got closer to the date.

The waiting is truly the hardest part; knowing that your precious child has to undergo this surgery (even though all the babies have come through it just fine) is hell. I know i didn't really answer your question, but i wanted to empathize. I know what you're going through, and you will get through this.

[Janet]

First of all Sick Kids and Dr. Phillips will take AWESOME care of Lilah, so you don't even have to worry about that!!! It's very stressful when your child has to go through this, I've lost it before the surgery on many occasions. When you first see her there will be many tubes, but you will be amazed at the work that Dr. Phillips does. Cry if you need to for the next month, it does help.
Fiona will be having that cyst remove in either late August or early September....I think Lilah's surgery is September 10th right? I know that Alan told me that Fiona will be done after the major operation in the morning...maybe it will be the same day. I would love to meet you. :hugg Stay strong Momma!!

[charliesmummy]

Welcome Christina im glad you have found us. For me personally, this is the place that kept me going and all the wonderful people here. You can shout scream cry and even have meltdowns and there's always someone that will help pick you up and encourage you to be strong. The last few weeks are always the toughest as so many thought's and fears fly though your mind but our little one's are infact the strong one's as you will find out in September with Lilah, she will just blow you away with how she copes. In the meantime though please ask as much as you want and shout as much as you want, we are all here for you xx

[matt-n-jack's mom]

Welcome to CranioKids. I hope that what everyone else has said has helped, mostly because I am getting ready to repeat some :)
The days, weeks, months before surgery were definatly the worst for us, and looking back, it was even worse than surgery or recovery. After the initial meltdown after we handed Jack over to the surgeon there was actually a peace knowing that what we had been dreading was actually taking place and that that part was all over, time to move on to a new worry I guess? I know that sounds weird but rather than researching and thinking about what COULD happen all I had to worry about was Jack and what was actually going on.
In the waiting room it really helped to have family/friends with DH and I. We had a wonderful support system and they all wanted to be there to provide whatever mindless entertainment we needed. I really enjoyd scrapbooking while waiting. Our group took over a small area of the waiting room that had a couple of tabes and I spread all of Jack's pics out and we all sat around and talked about them and put together his book. (Being my second child I hadn't done it yet anyways!) There were also times in the waiting room when I just needed to be by myself. I paced alot in the hall way. One of my friends would wakd with me at times but not talk unless I wanted her to, that helped. I also brought my computer and hopped online here and read about people who had made it to the other side.
Post op was hard but despite the tubes, lines, and bandages it is still your little baby and you somehow are able to see through it. Don't be afarid to hold her. My arms ached to hold Jack and after the nurses were all done checking him out they were great at helping me to do it. (His head weighed a ton!)
I hope at least some of this rambling helps. Remmeber that all you are feeling is very normal, and we are all here for you!
You and Lilah are in my prayers! jessica :smooch

[fumbling22]

Christina-- Your daughter is too cute! Jessica-- I've been going thru a list of things (other than crying) that I could do to pass time while Blake has surgery. I really hadn't come up with much that I thought I could actually focus on. Scrap booking is a fab idea, though! It seems so cathartic to do this during such an emotional few hours. I know I still have a lot to fill into Blake's baby book. I know I had a really hard time initially when Blake was unofficially diagnosed by his pediatrician. Craniokids helped a lot. Since then, I've actually been doing really well emotionally. I figure that his pre-op will be pretty emotional.... and then a couple of days leading up to his surgery, too. Really, though, Blake brings me such joy that I would hate to waste his pre-surgery days feeling sad about his head and surgery.

[kctruvy]

I probably won't have more to add.... but I'll try...
The waiting is the hardest part! I would have some days I didn't even think about the surgery, but the days I did...I obsessed! I was working alot so that helped me keep my mind busy, and 6 years olds don't really care about your issues...so I had to just suck it up...but it helped being sorta forced to think about something else. I had One friend who I could go a cry to when ever I needed to at work. And she would cry with me and sometimes just try to understand what I was going through...
As far as during the surgery, I brought the laptop, We have a caringbridge site for Owen, so I updated there, and came to cranio kids to lurk around...but it didn't seem like it took too long...We had family there to sit with us too.
For me, I worried about something going wrong....and Im sure we all did, but I trusted the Dr. and made that very clear. The night before the surgery was probably the hardest...I just thought too much...try to keep you mind busy...And most of all
Your baby is still growing and changing, whether you pay attention or not! I lost my focus worrying so much about the surgery. and Before I knew it He was 4 months old, starting solid foods! it kicked me back to reality...don't forget to enjoy her now, she'll only be this age once...
You'll be in my prayers!
Good Luck!
Casey

[three.little.boys]

Just hang in there...the waiting is the hardest part. You will be suprised hopw the "adreneline" kicks in on the day of surgry and you will be in "super mommy" (or daddy) mode! You will be shocked at how strong and well prepared you are (a lot thanks to the wonderful people here on CK!!). You will do great!!! So will your little angel...she is SO strong and she will AMAZE you!! ALL of our kiddos who are on the other side are our little heros! For the most part, they all cam through with smiles on their faces!!! (after a bit of fussing! hee hee!)

[cadensfamily]

Waiting for the day to come is the HARDEST part. I asked the same thing and I'm reading this thinking we were there 4 weeks ago today and at this time was the first time we were able to see Caden since 7:45 that morning. The day for me went better than expected. My in laws were with us, I brought mindless stuff to do like cross stitch and a magazine. the phone rang every hour so then we'd update our friends and our caring bridge website, so hour to hour went quickly for us. they were actually done with the surgery sooner than we expected which was great.
We stopped researching 2-3 weeks out b/c it can drive you crazy. Even though it's only been 4 weeks, it seems like months ago now b/c he has bounced back so quickly.

[Monica]

With my four kids, I was so busy that I often forgot about it, but there was always something hovering in the corners of my mind...a dark shadow that reminded me what was coming up. I did occasionally take Tylenol PM to help me shut down at night, but since Florence was only 3-4 months old and nursing, I couldn't really get too out of it. I distracted myself with my other kids' activities and I basically carried Florence around 24/7 because I didn't want to put her down. I prayed ALOT. I asked for confidence that we were making the right decision and of course I prayed for it all to come out right. And little by little God took care of all the small details - from trying to get to preop tests during rush hour to her being willing to eat at the last possible moment before she had to go without to my being able to hand her over when the time came. You'll be fine, just hang in there!!!

[momofaaa]

I am almost having a panic attack reading this. My daughter is due to get surgery April 16th. I wonder too how are we alll going to get through this. I am trying to prepare myself for seeing my daughter afterwards and i just keep thinking this is necessary.

[Avery's Mom]

I am reading this and have had quite the opposite reaction but I guess that may be because this will be Avery's fourth major procedure. Not that we are old pros and I fall apart each time they bring him back to us......but we have a wonderful relationship with our plastic surgeon and all of his entourage. This will be his third time working on our little guy, having repaired his cleft lip and palate so I guess I don't have that fear of the unknown that some of you have had to deal with.

Still this particular procedure does have me freaked out a little, in that I cannot quite wrap my head around the fact that THEY WANT TO TAKE HIS SKULL APART. HIS SKULL.......HIS LITTLE LIMA BEAN HEAD.

[dannlark]

Hang in there guys!!! I know the waiting is the scariest time. You'll be on the other side before you know it!!!

[NorthernLight]

Our surgery is 04.20.09, just a little over three weeks away from now. I am seriously starting to freak out. I have so many crazy thoughts that you would not believe it if I told you. I am even sometimes beginning to convince myself that my sons trigonocephaly has gotten better and that he does not need the surgery after all. Like many of you I have also had a time with a huge need to know EVERYTHING about my sons diagnosis. Now I just don´t know how much more I can take in, and I am trying to focus more about all the practical things that has to be done before hand. At least that is something that I can control myself.

[*jules*]

Aw, all you having surgery in April. I know you must be panicing now, but try to stay strong and focused. Soon it'll all be behind you and you'll be talking me down come May, lol! Hugs to you all! I'll be saying a prayer for you guys!:grouphug

[joshuasmummy]

:hugg you will get thru this.
i can remember the 1st day we went into hospital (day before surgery), we were told to take josh to have his photo's done. when we got in he lift i said to my husband, lets leg it while we can! but knew we were doing the right thing.
i had the same thoughts as you, wondering how we were going to reach the other side without going in sane, but we did.
its as though someone presses your automatic button and you go into auto pilot and get on and take what is thrown at you. its not easy but you will soon be thinking" i cant believe its over, it went so quickly". the lead up to it is one of the worst bits.
you will be fine mummy, keep your chin up.
:hugg stay strong x

[Avery's Mom]

Two weeks from today......our surgery date......starting to freak a little too. Have I mentioned they want to TAKE APART HIS LITTLE LIMA BEAN HEAD?

I mean I know he will be fine and I have an overload of info about what to expect but I still got up and cried thorugh my morning shower today. SIGH I just want it to be over already.

[Makaylas Momma]

Seriously waiting is the HARDEST part!!! Try not to freak out about all of it.. Avery's mom, Makayla had the SAME closer and that says alot there are not many Lambdoid babies out here...

Shes doing WONDERFUL... even smileing!! The hardest part is waiting, I have cried a few times.. crying now.. not because of this but at the thought of going home!! Takeing my little broken (BUT NOT TWISTY!) baby home scares me!

BUT I too cant beleive how fast it went...

[Mama Musica]

Yup, I'm in the freak-out stage too. Last night I went to the hospital for the pre-op class and hospital tour and it hit me- they are going to open up my baby boy. They are going to take him away and operate on him and I don't know if I can do it.

*breathe*

3 weeks and counting...

[Kate Carey-Trull]

I am there too ladies. I had to take Cam in today for bloodwork and the next time we go in it will be for the surgery on April 21st. I totally can't sleep tonight. It's like I just can't shut down thinking of all the things I need to do and then it winds around back to the surgery. With my 5-year-old in half day kindergarten mornings go pretty quickly and then she is home and we are busy, which is good, but i don't feel like I can let myself think about it during the day, y'know?

[Avery's Mom]

We had the Pre-op visit from HELL yesterday.

Dear Nurse: When I tell you there is no way you are getting that much blood, if any, out of his arms or hands why don't you believe me? When I tell you that IV's ALWAYS have to go in the ankles why do you look at me as if I have lost my mind? Why must two of you poke him 5 times before calling the doctor to get permission to take it from the ankle and why is there only one phlebotomist on staff qualified to do so? And why does she work 5pm to 5am? SIGH

Rant over.

P.S. Once she got there she stuck him one time, drew three vials of blood and he barely cried.

[*jules*]

We had the Pre-op visit from HELL yesterday.

Dear Nurse: When I tell you there is no way you are getting that much blood, if any, out of his arms or hands why don't you believe me? When I tell you that IV's ALWAYS have to go in the ankles why do you look at me as if I have lost my mind? Why must two of you poke him 5 times before calling the doctor to get permission to take it from the ankle and why is there only one phlebotomist on staff qualified to do so? And why does she work 5pm to 5am? SIGH

Rant over.

P.S. Once she got there she stuck him one time, drew three vials of blood and he barely cried.

Man, I would be fuming! Sorry you had such an aggravating pre op experience. I will be hoping that the post op nursing staff are much more considerate and respectful of your opinions and suggestions. :hugg

[Tawnia]

Hang in there Mommies you can do it!

[Kate Carey-Trull]

Avery's mom -- that sucks! I have to admit it went pretty well. Lexi once need to gey bloodwork done b/c her lead levels were funky and it was awful, her veins kept "flipping" and they had to try again and again. And she was older, maybe 2 1/2, and so not happy.
It started to slow down yesterday after one vial, but she said she had enough, so hopefully it is all set. The nurse was great and got the needle right in, she took longer tieing the rubber thing on his arm to check which arm to do, etc., and then once she did it, it was quick. I was a little nervous b/c she seemed not sure about a 3-month-old, but then it went fine. :)

[Avery's Mom]

I try not to get upset because it just scares him more. It is the restraining him I think that frightens him as much as the pain of them digging around in there with the needles. Next time we will know to have the orders written differently. Who knew there was a difference?

[sstohon]

OMG, I can so relate to all of you. My husband and I handle stress so differently and we are constantly fighting over it. I am an optimist and he is a pessimist. Our daughter's surgery is 1 week away (4/28) and I want someone to tell me she is going to be fine...no more surgery and no more complications...is that too much to ask? I know it is, I am just scared for her. I want her to have a normal life.

Good luck to everyone having surgery this week!

[evergreenmom]

Waiting is the hardest part- you've all read this dozen's of time's on here I'm sure, but you probably still don't believe it- truly I didn't either, but I'll put it in big letter's hoping it will help you:


The waiting is the hardest part


Even the morning of surgery and the days that followed were no where near as torturous for me as from the moment I first heard the word Cranio 'til the moment they took my darling boy from my arms. The best advice I got from someone on here was to just try to enjoy every precious moment with my angel, and to try to allow his his lust for life, his joy at each new experience in the world to give me strength and courage and peace. These kids do great, it's definately hardest on us parents.

Avery's mom- you made me LOL over "Lima bean head" I keep saying Xander's was like a kidney bean!! Still is a little... supposedly will morph over time. Anyway, best wishes to everyone headed for surgery, and just try to worry a little less, and enjoy your beautiful babies a little more- doing that was the only thing that gave me any peace at all during those five long months while we waited for the big day! Take care- Kristin




Two weeks from today......our surgery date......starting to freak a little too. Have I mentioned they want to TAKE APART HIS LITTLE LIMA BEAN HEAD?

I mean I know he will be fine and I have an overload of info about what to expect but I still got up and cried thorugh my morning shower today. SIGH I just want it to be over already.

[Squirrelletta]

scrap booking, wow, great idea. i have a almost 5 year old son too and could sure catch up on scrap booking!

[jsr1220]

LOTS AND LOTS OF PRAYERS AND RESEARCH! And the helpful others on this site! :lol

[sharontomos]

During the op, we went shopping - advised by hospital to get out of the hospital for a couple of hours. We got our provisions for our stay at the hospital and a little pressie for Gruff. I also spoke to a cranio mum by phone for some moral support. During the long nights after the op sleeping on the ward, I took my computer and updated Gruff's progress on this site and posted some pics. I had some fantastic support and I have printed out the [ages for Gruff to read when he is older.

Odd isn;t it that even thinking about the op and what we did is stirring up so many emotions that I thought I had forgotten.

Whatever you do before, during and after the op, you will do what's right for you and your family at the time. Thinking of you xx