tomorrow.

I feel sick. I love you baby Fenn.

one more day away..sort of

  Well tomorrow is the only full day left until Fenn's surgery although we will be spending most of tomorrow at sickkids for genetic testing and anesthetics testing for surgery. How do I feel at this point? Mostly just nauseous...really nauseous... I think although some people seem to be freaking out about my feelings they need to remember this is a journal/diary and we often write something one minute after releasing it we feel much better. For anyone who wants to know how I feel, well, this is how I feel. I really dont think there is anything wrong with how I feel if you were to imagine your own child being sick. Some of you have or are going through this and now I can relate. I wish I couldnt relate honestly but atleast I have people to talk to who really get it. I often find myself wanting to delete everyone on facebook with healthy children and their happy postings and pictures of fun times with their kids. Im probably jealous. I think thats also normal. It just doesnt seem fair to me. I dont think anyone's kids should be sick, but especially not mine. Why? Because hes mine. Dont you feel that way about your child too?  Tonight Im having an early night, going to bed, will TRY to sleep and prepare myself for another day of doctors and nurses waking Fenn up from his peaceful naps to poke and prod and take blood. Sounds like a fun day doesnt it? Dont take for granted that your child can just sleep when they want to and eat when they are hungry and play, laugh and smile without the impending doom of knowing his/her head is about to be cut open. Reality sucks, or if you a teenager of the 90's such as I, Reality Bites.

lots of denial

  I often find myself unable to comprehend what is about to happen. Its only 3 days away. Fenn has been especially cute these day, he has started singing himself to sleep, reading books to us and having belly laughs when you tickle him. With my family here I am distracted and I dont have time to react like I would if they werent here, I dont know if thats good or not, probably good. I think otherwise I would just lay in my bed and cry everyday until the surgery. I am glad they are here and able to help me, after the surgery I am positive I will be a mess. Nothing can prepare me for the swelling and physical appearance of my baby. I know whats coming, but I dont. Im scared. Im afraid that my smart, alert, fun and normal developing baby is the one that goes into surgery but not the one that comes out. I dont have peace about the surgery like I did before. No little baby should have to endure this. No parents should have to know what this feels like. Everytime I am at Sickkids my heart breaks for parents who have to 'live' there and just wait until their children die to finally leave, its depressing. My mom said she never thought she would have to see the inside of sickkids hospital, its just something you watch on tv when they are trying to earn money. I agree, I never thought I would be there, but I am also grateful we are able to be there if we had to be anywhere...Im glad Im not seeing the inside of Moncton hospital for this!

  Off to spoil my little baby now. Im spending every spare moment with him. My little Fenn boy.

Morning After

  Well I am not feeling any better, actually worse. I have so many questions in my head about this surgery and a bad feeling about it. I feel like they are using us to try out this new innovative surgery and Im sure they cant wait to get their hands on Fenn. The surgery I wanted them to do is the one they do hundreds of times a year with an excellent success rate. This surgery is new, been performed 5 times and in those 5 times has not always worked, doesnt sound too promising does it? Not only that the sample pictures they showed us were of severely handicapp children so their claim that Fenn will not feel pain or be able to tell these huge metal rods are coming out of his head for 3 months also doesnt sit well with me. The whole reason we wanted the surgery earlier was because of his headaches...  Im pretty sure the body naturally rejects things that stick in it that shouldnt be there, like most of us have probably had really infected body piercings because our body doesnt want them there, like my friend Myles who got a big 1 inch spike stuck in his hand and eventually had to be on antibiotics and have it cut out.  I feel with this surgery there is a much higher risk of infection along with many other risks, some that are with both surgeries and some that are just with the surgery Fenn is having. I am angry because his headaches will continue until his skull is gradually moved. I am angry because people will stare at him and ask questions when its none of their business. I am angry he wont be able to do the normal things baby's do at this age because the rods will be in the way. I am angry because (with good intentions) everyone is telling us 'it will be ok' ' it cant get any worse' things will get better'....when I know full well that things dont always get better or are ok and so far things havent gotten worse for us over a period of 3 years.  What if things dont get better? What if they get worse? Those words dont help me, Im a mom, I plan for the worse. Prayer hasnt done anything for us. What does help is not having to worry about having food or a place to live while we go through this and as usual most of our help has come from non christians.

  Mike is questioning why things have been so bad since we have been together. I cry for for Fenn, I cry for myself, I cry for my marriage. We love each other, is that enough? How much can we take as a family? Mike and I deal with things very differently, its difficult. 

  Please dont tell me we will get through this and this will be ok. Dont feel bad for saying that if you did either, I know everyones intentions and I can appreciate them and I am thankful people care enough to write, it does help to know so many people care. But the reality is things dont have to be alright. People have brain damage from surgeries, people die from surgeries everyday... Unless you see into the future these are very real risks we have to think about as parents. And someone has to have the child who is sick or dies, I see them at Sick Kids everyday so whose to say thats not us.

  I have so many questions. Im going to email the surgeon again.

why why why

  After our appointments today at Sick Kids I am having a hard time understanding why some people get perfect babies, perfect pregnancies, perfect finances ect... and why some people get none of the above. Mike and I don't understand that ever since we have met our whole life has been a struggle, one thing after another, we keep saying it cant get worse and somehow it does. I dont know why people expect me to believe there is something out there looking out for us. I dont understand if there is why all the people that are praying arent making any difference in our lives. I dont believe it works. Maybe I will change my mind but I am writing what is on my mind because this is the real experience of a mom dealing with her baby being sick.

  The surgery is at 9.30 on Tuesday. I dont find comfort in knowing this operation has been performed only 5 times, or that our neurosurgeon has been changed. I didnt like being told the risks of the operation and that Fenn was high risk for all of the things that could be wrong, maybe it their job to tell us but maybe I would have appreciated some discretion in how much they told us.

  My heart is breaking...breaking breaking breaking. I am very afraid Fenn will suffer brain damage, I hardly want to speak/write those words but they are very real possibilities. Please dont tell me my sons heart could stop or that he could die. Heartless. I dont want any of this.

For those of you interested here are Fenn's surgeons. They are the absolute best in the world. One thing I am thankful for is that we moved back to Toronto.

Fenn's Plastic Surgeon

Some good news

  So after another trip to the pediatricians, a letter to the neurosurgeon and plastic surgeon they are going to see Fenn a week earlier. This Wednesday we will be spending the day at Sick Kids Hospital and I hope this time we leave with more information then last time and hopefully a date for the surgery.

  There is nothing worse then seeing your baby suffer and not being able to fix them. I llive for the moments where he smiles and laughs and dread the hours he cries on end, not because I dont want to hear the crying, but because there is NOTHING I can do. I try but nothing consoles him. All I can do is hold him and love him and tell him that mommy and daddy are going to fix him. I just wish we could fix him now not in a month from now.

Almost two weeks

We found out almost two weeks ago that our 4 month old baby, Fenn, has craniosynostosis. Since that time all I can do is wonder why they haven't fixed him yet. As much as I am afraid of the 7 hour surgery he has to go through I know its necessary and the sooner they fix him the sooner we can try and get back to normal. There is nothing worse than watching your baby in pain and not being able to do ANYTHING to console him. He cries and cries and in between those cries he still manages to smile for us. Babies are so strong, much stronger than us.




We are waiting to hear if they will push up his neurosurgeon appointment. You would think when they told us they believe there is pressure on his brain that he would become some sort of priority but we are still waiting. I just don't want my baby to feel pain anymore, I wish I could speak to him and he would understand why he is feeling this and that there is an end to it.