Pre op Thursday & operation Monday -HELP!

[hardtimes]

OMG i am sat here thinking of all sorts. I am so worried about this operation and how Ruby is going to feel!
I am worried she is going to be in pain or feel some sort of pain. I do not want to pack her things, I have gathered a few of her clothes up to take and even that makes me burst into tears, i feel as though I am packing her life up!
I am freaking out and I don't know what I can do to calm myself. I am trying to think that in a couple of weeks this will all be over with, but what my beautiful happy little girl has to go through before that coupld of weeks is terrifying me. everyone says it will be ok and i am fed up with them saying it. i am very snappy with my family and say how do you know she will be ok, have you got a crystal ball!
I feel dead inside!! any advice?
Jacky

[Janet]

:hugg The weeks leading up were the hardest for me. I went to see my doctor, she gave me ativan to take the edge off.
I was the same way as you were, I cried a lot, and was very short fused. I was amazed how fast Fiona recovered. I asked about pain, they told me that they are all about "pain control". You should see what your hospital does for pain control. Although I don't know how much pain they are in, I think they are scared more then anything, and uncomfortable from the swelling.

You will get through this, I promise. :hugg :hug :hugg

[Orla&Ronan]

Know how you are feeling - we are a couple of weeks from surgery and already very anxious - don't want to think what it will be like nearer the time! Just hang in there - keep thinking of the future and how this will all be over with soon and your little one will, I am sure, surprise you at how well she copes - no hospital will let her be in any pain, they will manage that constantly. Good luck and will be back to get some tips from you when its over and our turn! Take care.

[hardtimes]

thank you to both of you!
Janet - i was prescribed some tablets to take but now found out i am 6 weeks pregnant so cant take them. I was really hoping that would ease the pain!

Orla - i will certainly post on here whatever helped me get through it. i really don't know how i am going to but i suppose as a mum you just have to deal with it!

Dreading every single second until this whole thing is over and done with!

[Janet]

Congrats on the pregnancy :hugg

This will be over soon, you won't believe how fast time flies after the surgery, we are celebrating Fiona's 3 year post op on the 26th. I promise you, that the bad memories will fade.

[mumtogeorge]

This will all be over so soon, and all these feelings will go. After the surgery and you see Rubys new head it will be all worth it. You can do this and are so nearly on the other side. Big hugs x

[alimor]

I really wish I could say something to help you but I am waiting too. If I was you I would go back and read through other people`s experiences as I have always found them reassuring. I will be thinking of you and Ruby all of next week. Congratulations on the pregnancy. xx

[Sawyer's_Mom]

I wish I could give you a big hug right now!! What you are feeling is completely normal though. I was so tired of my family and friends telling me everything would be ok. I remember wanting to yell at them. Hearing "it will be ok" from other cranio moms did make me feel better though. You are so close and somehow you will just find the strength to make it through. I actually felt so calm and so much relief the day of the surgery. Try to take comfort in reading the stories on here and take care of yourself and that new little one!! Congrats by the way!!

[ElenasDad]

My wife and I know how you are feeling. Our daughter's pre-op is tomorrow and surgery is on Thursday. Although I can't give any advice from personal experience regarding Cranio surgery, I can only tell you how we are dealing with it. We are doing our best to have faith, both in God and in the competence of the surgeons involved.

At this point, you have done all you could. Although it isn't easy, do your best to leave the rest to those who can do more: the surgeons, nurses, etc.

If you are religious (or if you aren't and want to try something), pray. If possible, find somewhere quiet and private, and talk to God. Sometimes home isn't very quiet or private, so a drive to the park or a mall parking lot is in order. Sometimes I put the cell phone up to my ear so passersby don't think I'm talking to myself :) Explain your fears and feelings. Nothing has to be formal. Just an honest outpouring of feelings.

It may not be everyone's cup of tea, but this has helped me find peace through dozens of difficult and stressful times in my life... like right now. A very good friend of mine who is atheist says it is just my "self power of suggestion". I prefer to believe it is something more. Either way, I always gain a measure of peace for a time. In the meantime, I will pray for you, your child, and your family. Take care.:hugg

[Nezzy]

Hang in there. What you are feeling is totally normal. Every child is different, but I can honestly tell you that Nicholas did not have much pain. I know it sounds crazy. And even if your daughter does, they will keep it under control. she is going to amaze you at fast she bounces back.

congrats on the pregnancy!

[Nichole]

Jacky, I felt the same exact way - you are not alone!! Each day will get better because you are closer for this to be behind you, and just think that it will all be over soon. During recovery after the surgery when we were in the hospital I felt like I wanted to jump out the window. I am so happy it is behind us and you will feel that way too very very soon!!

[Monica]

Like Heather says, it does sound crazy to think our babies could go through this horrific surgery and not only survive, but thrive and come through with flying colors. I read all the other stories and took comfort, but couldn't help but feel my experience would be different. But Florence did wonderfully. And I truly have no regrets. I know it's awful - and your scared feelings are probably being fed somewhat by your pregnancy hormones. You are going to be on the other side before you know it. Hang in there, we are here for you!

[hardtimes]

Thank you so much everyone. Your words and advice ceratinly gives me comfort. I am really looking forward to this all being over with. I am just going to have to take it 1 day at a time as you all have.
When I have been through this all, i will update you all. WE have the pre op tomorrow, even that is working me up and I am feeling incredibly sad and wondering how i am going to cope with that, let alone the surgery day! ''**deep breathes** 1 day at a time''

[Ger]

Hope all goes well with the pre op. I emailed you a few weeks ago because we were over in Oxford last week, just to let you know we got home early on Monday. I understand how you feel and when I felt like that I kept saying to myself that this is what I wanted. I know people who have grew up with an issue that was visible to others and life was not kind to them so I would have done anything for Neve not to have to go through any social anxiety, there is also a small chance of pressure in the brain so this operation for us was a necessitiy. I have to say that I trusted the surgeons completely, and they did a fantastic job. You will be through this this time next week. Take care and will be thinking of you.

Geraldine

[hayley]

Aw Jacky you are not alone hun we have all felt like that but you have to trust us when we say you really will get through it's not gonna be easy at times but you will get through this. Congrats on the new pregnancy xx

[WW1]

Thinking of you. You'll be on the other side really soon now - hang in there.

And congrats on your pregnancy!

[AJ's Mommy]

Praying for strength for you! I know exactly what you are feeling as do most of us who have been thru this. We are all here for you!! Congratulations on your pregnancy. Take good care of yourself as well as your sweet baby! Soon you will be on the other side!!
Hugs
~Shelby

[audra15]

I hope that pre-op went well today. That day was nearly as hard for me as the surgery day just because I was so anxious.
The doctors and nurses will manage Ruby's pain. Our surgeon said the babies weren't in that much pain which I thought was crazy but Kyra was fine with only Tylenol the day after surgery and wasn't even taking that by the time we were discharged. They do so amazingly well.
I know it's hard to hear everyone else say that it will be ok. I am sure they are just trying to comfort you but I wanted to slap everyone who said that and ask how they knew. We can all tell you that it sucks and it's unfair and it's hard but I do also have to tell you that you will be ok. We all found a strength to get through even when none of us thought we could.

[Carmen77]

Was wondering how your pre-op appt went today?? You will find that you get this tremendous strength to keep moving forward!! Will be sending lots of prayers on Monday and the days to come!!

Keep us posted when you get a chance!! Will be waiting to welcome you to the other side!!

[Carmen77]

I'm glad your baby was a trooper..

The risk of major blood loss is one of the major ones, I was told the same thing by my sugeons! I was also told they they were fully prepared for the worst with suffiecient blood supply just in case.. Not exactly the words parents want to hear!!!

The hardest part is the days right before, you have so many doubts, second guessing yourself! I'm sure you have heard it a million times that are kiddos do so good, but we have to be aware that like with any surgery there will be risks, but the percentage is very low. At least that's what I was told.

Good luck! Sending a lot of prayers..

[ElenasDad]

I think with any major surgery, there is always a risk of complications whether by bleeding, infection, etc. Understand that the surgeons, doctors, nurses all have to inform the parents of the worst case scenario. This is probably for insurance purposes as well as just being truthful. It is all part of the Patient's Rights and Responsibilities that so many hospitals and medical offices make us sign these days. If you haven't already, you'll be asked to read and sign one yourself. As a patient's parent, one of those rights is your right to know all the details regarding the surgery, treatment, possible outcomes, etc. This is so you can make an informed decision.

Even though we did Endo, we were told the exact same thing. I know. It's scary to think that if you choose surgery for Ruby, there is a very small chance she will have complications because of it. I bet everyone on this forum had/has the same fears before, during, and sometime after the surgery.

All I can say is go with your parental instinct. If you and your husband decide to move forward, have faith in the NS. I read on your profile that you have heard a lot of good things about him. And like I said before, PRAY. Pray about making the right decision. Pray after the decision is made that things work out. It can't hurt. It will only help. Meanwhile, there are several of us on this forum who are doing the same for you.

Hang in there! :comfort

[WW1]

Oh hun. Just reading what they told you made me feel sick in my stomach so I can only imagine how you felt. As others have said, they HAVE to tell you the possible risks though ~ they have to be sure you have all the facts available to you. The risks really are tiny (I was told significantly less than 1%) and when weighed up against the benefits of having surgery it is still a positive decision. Please remind me of that when I'm having the same doubts in a couple of months time!

I remember them listing all the possible things that could go wrong when I had my c section with Rebecca - I nearly told them not to bother and I'd stay pregnant!! Of course it was all fine and I needn't have worried.

I'll be thinking of you on Monday - stay strong x

[Alisonjane]

Hi Jacky
I feel for you so much. Reading your posts bought tears to my eyes. You will get through it! Yes it'll be tough but you will. I promise you that Ruby will amaze you!! I know it'sbeen saId a million times before but it is harder on us Mums than it is on the little ones. Before you know it she will be smiling and laughing and it will all be ok.
Blood loss is a risk, but that's why they do the blood tests so they have it on hand. Make sure you use all the hospital staff, they have been through it so many times. Trust their experience and don't be afraid to ask the silliest questions! I know I did!
It's all to easy to say, but this time next week it'll be over, this time in a month you will be so proud of your little girl and it will all be ok.
Please ring or text me if you need anything and at anytime. I wish I could help you more and tell you how I got through it. The only thing that kept me going was every little smile and everytime he'd reach for my hand.
It is hard but you are doing the right thing!
Sorry I'm rambling, it's late and I can't sleep. William is spark out!
All my thoughts are with you and your family!
Ali
ps congrats on the pregnancy :-)

[lisab]

My daughter chloe had cranio surgery 6 years ago, i know the feeling only too well. i dont want to scare you but be prepared for the change in ruby afterwards, i read lots of info on the internet but it still doesnt prepare you when its your own child. Chloe had her surgery in great ormond street & i couldnt of wished for better care, they were amazing. The morning she went for surgery i was a total wreck, i didnt want to let her go but knew it was in her best interests & she was too young to understand what was happening, its heartbreaking but you just get through it and try to stay strong as best you can. When chloe was brought back from surgery i got an almighty shock & felt i had lost my baby & been given another, such a weird feeling as i obviously knew it was her, & i felt so much pain. I was amazed at how quick she bounced back though, the following day she wanted to make her way round the wards playing quite happily. She was allowed home in 6 days with regular checkups to follow. She is doing amazing now, such a happy bright little girl & ruby will be too. My thoughts & prayers are with you & i hope all goes well for ruby & your family xx

[hardtimes]

thank you again to you all. it is such a scary and overwhelming thought that there is a possibility of uncontrollable bleeding leading to - you know what- i cannot even bare to say the word.
Last night was definitely the worse night my husband and I have gone through so far, we were both in tears all night thinking of that very small possibility, i constantly feel sick to my stomach. I am asking for all of Rubys guardian angels to come down and watch over her tomorrow, i hope they do!
God knows what i am going to be like tomorrow, i cannot believe this is happening.
Thank you for all your comments, they do bring comfort and i know you have all been through it so know what we are going through.
See you on the other side! x

[fitmomof2ae]

I'll be praying for you and your family! Keep us posted.

[Orla&Ronan]

Will be thinking of you today. We have our pre-ops on Friday and surgery on Wednesday, 22nd Sept. It is a horrible anxious time but try stay strong for Ruby and you will get through this. I had a long chat with Ger, whose little girl Neve had her surgery 10 days ago and it really helps to stay on line here and get the reassurance from all the Moms who have been through this. Take care, it will be a tough week and hope you get through it ok.

[charliesmummy]

Thinking of you hun, stay stong.

Just a side note, what happened to Catrin was very very rare & had never happened before. It was the Saggital Sinus that was torn & resulted in her death. This was over 3 years ago now & not a single hiccup since but they have to make us aware of the potential risks.

Good luck sweetie & see you on the other side xxx

[Janet]

Best of luck today :hugg

[Carmen77]

Best of luck today! Sending tons of prayers.. waiting to welcome you to the other side..

Stay strong momma, Ruby is gonna need you! Keep us posted if you can!

[AJ's Mommy]

Good luck today!!! Keep us posted. Prayers are coming your way!!!!

[hayley]

Been thinking about you all day Jacky i hope your all doing ok and little Ruby is coping well, can't wait to hear from you x

[BrendansMummy]

Wishing you guys all the best

[WW1]

Thinking of you x

[Ger]

Hi hope all is going well. The surgery is hard but I found the few days after that harder. It was so difficult watching her in discomfort and trying to comfort her with so many drains etc.

Praying for Ruby and all the other kids having to go through surgery at the minute.

Ger