1 month. 5 months.

  Its been one month since the surgery and Fenn turned 5 months on July 24th. He is changing so quickly its crazy. You always here moms talking about their babies growing up too fast but you never really understand it until it happens to you.

  Daccia, stop reading this blog, I already told you all this on chat haha! I was telling her that it is difficult right now because Fenn has been so unpredicatable. Although this week I know he will cry 3-4 hours straight everyday. It might be because we are no longer giving him morphine. He still acts as though he is in pain and beyond tylonel and advil I dont know how to help him. Our next appointment is with the plastic surgeon and the opthamologist the first week of august hopefully they have some ideas of what we can do for him. Its just so depressing to see him like this, Im holding him and singing to him and nothing calms him down. Then he will have a brief moment where he is Fenn again and just look up at me and smile before the pain takes over again.  I think this is the hardest part. I cant wait until his next surgery is over and we can start to put this behind us instead of being in the middle of it.

  Well here I will post some new pictures of Fenn for everyone to see and also on a side note, unrelated, I got interviewed by Yahoo Canada have a read:

http://ca.lifestyle.yahoo.com/pets/dogs/articles/e/health-nutrition/dogarticles/168/pet-food-banks/1

two week pictures

 Ive been so busy with company I havent gotten a chance to post any progress pictures so here are a few at two weeks:

cousins

   Julie and Amilia just left to go back to N.B. and I am now alone. Fenn is getting semi easier to take care off, less cleaning of stitches, less medications...still being difficult to put to bed though. Not sure if its related or just normal baby stuff. Sometimes I can tell if he is in pain and sometimes I cant. However, we had a check up today at Sickkids and the doctor took out the endy parts of the distractions so we no longer have to turn the screws. Now the distractions just stay in and we wait, wait, wait for them to do their magic at changing fenn's head shape. When they are satisfied the next surgery will be scheduled.

  Anyway, I took some pictures of Fenn and Amilia so I thought I'd post some here. Enjoy!

One year ago today....

  A little off topic of Fenn but its so important to me I just wanted to write a little bit about it. On this date last year I lost my dear little friend Banana Bird, my canary. He was more special than words can express. I found him in a terrible time in my life in an alleyway off of Queen St. West in Toronto and I spent a good hour trying to catch him to save him from inevitable death. He came to me when I was doing alot of things that were harming me and he really saved me as much as I saved him. I took him home and had no idea what to do with a bird, I didn't even like birds! That day an antique store next to my apartment had a birdcage outside on the street for sale and I took this as a sign that it was fate and that Banana and I were meant to be. We were.

  Anyone who knows me now knows that I am obsessed with birds, I spend alot of time birdwatching (or did until Fenn came along) and I hope to pass that love on to him someday. Last year I found out I was pregnant on July 8th after thinking I had the flu... I was so ill...sooooooo ill. Banana bird shortly after started acting a bit different than usual but I was just in bed lying there unable to get up hanging my head out the open window daily trying to shake off this awful nauseous feeling. Turns out I didnt shake off that feeling until Fenn was born. While I was lying there Banana got more ill as well only I was not as vigilant as usual and I regret that with all my heart. By the time you notice a bird is sick it is usually too late, and it was, too late. I took him to the vets and they told me to bring him home again over night and if he worsened to come back. He got much worse, we took him back and they put him in ICU but by the end of the day the vet had called and told me when he tried to tube feed him he died in his hand. I shoved the phone into Mikes hand and collapsed onto the floor. Incosolable by Mike or my best friend Sarah who had to practically lift me to my bed. Everyone was worried about the baby, I was too sad for my dearest friend who passed away to think of anything else. I spent days in my room mourning his death. There is nothing quite like the death of a pet. Somehow I think we cant help but feel responsible because they cant tell us what is wrong, they cant help themselves, thats our job. I felt so ill. How did I let my feeling sick overshadow the fact Banana was feeling sick too?

  I miss him so much. I miss him everyday. I cant believe a year has passed without him. I think of him all the time. I cry still for him. I dont know if anyone can relate or understand what kind of loss this is, maybe someone does. He was just some pet to me, he really did save me, I really did save him, we saved each other. My life changed after Banana Bird. I became a better person because of him. I became who I am now because of him.

  I love Banana bird, I always will. Your box of toys and ashes are on my shelf and I look at your pictures often and remember the bike rides we took together and the shopping trips on Queen and College street. I remember how you came to work with me and how you sang songs to me as I wrote songs and sang to you. I remember how you always called for me when it was 8pm sharp every night reminding me to put you to bed. You were so smart. Miss you miss you miss you miss you. Always.

all is quiet

  The title is quite significant as that doesnt seem to happen much around here anymore! Fenn had a rough morning, pretty rough...lots of screaming and its not an annoyed baby scream its a baby in pain scream which is so hard to listen too. After passing him around from mommy to daddy to auntie julie and round in circles auntie julie put him in her wrap and we went for a walk. He fell asleep pretty fast, unless we stopped walking, then he woke up. The screaming stopped though but not until after he had some morphine first. I tried turning the screws this morning without the morphine, big mistake. Right now he is sleeping though and julie and amilia just went out for a walk, part of me wants to collapse and go to sleep but the other part of me enjoys the time when its quiet and if i go to bed i feel like im missing out on it.
  So mikes fish finally died (a little clownfish) we only had it for a couple of days, it made me sad...and its awol... we cant find it anywhere in the tank, i think it went to die under a rock but now its missing. i thought fish would be different but its not. We are only 3 days away from the anniversary of Banana bird passing away which happened 8 days after I found out I was pregnant. I think I spent about an hour balling on the floor before Mike and my friend Sarah convinced me to get of the floor and move my hysteria to the bed. It has quickly become the most difficult year of my life and I hope by meeting this date that it will end my terrible year. I miss that little bird more than words can say, everyday I think of him. I wish Fenn had met him, they would have been friends. I ll try to remember in a few days on the 18th to post some pictures of B-Bird. He was a very special friend and if he had been alive it would have made this year seem just a little better.

  That being said Fenn is a bright light in my life and as long as he is ok so am I. Im gonna miss those little antennas when they take them out!

 

sunny days

  So far today has been a better day, although, evenings are usually worse. We managed (Fenn, Julie, Amilia and I ) to meet with mom and baby group finally at Duffering Grove Park. We were going to go in the wading pool with the kids but it was FREEZING! Now he is having a nice afternoon nap like he should be. I will enjoy the quiet while I can before the inconsolable hours begin with his teeth soon. In the last few days I have noticed he doesnt really care what Amilia is doing, he likes watching us play Mario Brothers, hes not crazy about bananas but he doesnt mind avocado with creamed coconut and he is getting really irritated with all this head cleaning going on. He is a little unsure with how loud Amilia is so I think he might have Mike's calm demeanor...he's a little weirdo though so he's got mommy in him too ;) Heres a few more pictures:

with cousin Amilia (Julie's youngest)

above in outfit from Roxanne and below WITH Roxanne!

eating some books and hanging out with Amilia

so sleep....y....

  I just found this other cranio blog and I am feeling quite thankful to be living in Canada. Even though its been hard on us financially with all the meals out and parking, paying for some of Fenn's medicine and having Mike miss work its a walk in the park compared to living in the U.S. and paying for medical care. Their lists of expenses are incredible and I cant imagine looking at this bill and having to go through a major surgery with your kid:

Hospital Stay: $750 of the $102,365

Anesthesia: $414.80 of the $2,822


PICU Doctor: $586.87 of the $4,132


Neurosurgeon: $1,122.82 of the $33,269


Craniofacial Surgeon: $3,371.43 of the $31,000






Grand Total: $6,245.92 out of $173,588


(from her website http://craniomommynbaby.blogspot.com/ )
 
  I think its important to find things to be thankful for all the time no matter what is happening. I am positive that no matter what you are going through things can always be worse. We were lucky for Fenn to be such a strong boy and he brings a smile to my face everyday with his strength, his humor, his little smiles and well, just being my little boy! (SAPPY)
 
  Update on our check up on Friday, it went extremely well. His incision is healing well, hes eating again like he should and the vomitting has decreased since before the surgery although he is still throwing up quite a bit. We may get to stop turning the screws this Friday after our next check up at the surgeons and if everything looks good they will stay in for another couple of months without us having to turn them and then he will have the surgery to have them removed all together. Not looking forward the another surgery though and another downtime for working and income, that has been and is extremely hard. I really hope this is successful so he doesnt have to go through anymore surgeries after this.
 
  Anyway, sorry for not updating sooner about his appointment but I find it difficult to concentrate and write when there are people around and there has been alot of people around these days! Looking forward to getting Fenn out for some walks atleast this week if it ever stops raining and trying to get back to normal for a short period before we are back at the hospital. Maybe not the whole summer is not lost yet!
 
  Oh yeh, and as the title says... IM EXHAUSTED
 
 
 

a world of annoyances

   After our ER experience we were simply exhausted...last week was hard enough and we seem to never get enough sleep, with a normal baby you cant get enough sleep, this is just insane. To top it off Fenn also couldnt sleep last night...at all, none. He cried every few minutes. We have no idea what is wrong with him because it could be so many things. We took him off morphine so he would eat and he is now eating, but not sleeping. He is in pain from turning the screws in his head without pain medication (advil and tylonel dont really count if you ask me) and last night I felt some teeth breaking through. Poor little guy cant just go through majory surgery and be refused pain meds but needs to start teething too...aaaaahhhhhhhhh (thats a mother going insane with no sleep) He had a terrible day today for pain management and sleep. Not to mention my inlaws thought it was a bright idea to show up unannounced and even let themselves in our house while we were still sleeping this morning because they want to see the baby. Heres some news, the baby doesnt want to see anyone he wants to sleep for the 5 minutes he can and I had planned to sleep through the day while my mom was still here but was too livid to stay in bed when I had realized after walking into the kitchen looking like a zombie in my nighty with no bra on. Nice. Moral of the story, please call before visiting us because things are really difficult around here right now.

17 hours later...

 Well he hit a bit of a bump in the road yesterday, Fenn hasnt been drinking or peeing for a couple of days and sleeping for 10-12 hours at a time. We had to keep waking him up to take his medicine although I'm not sure what the point was since he kept throwing it up... Though Mike and I were and are both exhausted we realized at 10pm last night we needed to take a trip to sickkids. ER, as with our first experience, were amazing. We didnt even have to sit in the waiting room. Poor Fenn had to have another IV but narrowly avoided another catscan. He saw neurosurgeons, plastic surgeons, ER doctors and nurses throughout the night and morning. They kept him until he started eating on his own and so far at home he has done a slightly better job at doing so here. They decided to take him off morphine as they think it may have been affected his appetite and making him sick because he started vomitting again the last few days, yesterday being the worst at around 15 times. AND like the little superhero he is in between all of that still having time to read, laugh and smile.

  If we had to be at any hospital at all I am glad we have Sickkids to got to. I am amazed at the staff (minus that one nurse we had), the rooms are incredibly clean and private even in the ER and they dont make babies wait! (OH and for moms and dads there are flat screen tvs with cable)

  Tonight we are continuing to have a rough night, he threw up his medicine again but we cant give him more in case he kept some down. We cleaned his head and turned the screws and he was in pain. I think Granny just rocked him to sleep hopefully till the morning...Off ot have a very late dinner now and go to sleep, sooooo tired....

At Home with Baby

  Well we have been home for about 4 days now and I guess I havent really updated how its going. Althought the morphine is making Fenn sleep alot its quite tiring taking care of him. He has to have his head washed everyday and then also saline cleaning and polysporin and gauze three times a day. We have to turn the screws twice a day (daddy's job) and also he needs medication every 4 hours for some, 6 hours for another and 8 hours for his anti biotics. We are writing down how much he is sleeping and how many wet diapers because he isnt drinking as much as he should and Im worried he is getting dehydrated. Also, his head has now turned to bruises and it looks like there may be some infection at the distraction site. We go to see Dr.Forrest on Wednesday and will get him to check it out.

  My dad and sister left yesterday and Fenn was fussy all day, I think he misses them. My mom is here until Friday and now we arent sure if my sister Julie can make it here due to money. I am hoping for a miracle to get her here to help me because I cant take care of Fenn on my own and even though we have had some donations Mike needs to get back to work to catch up on all the bills we are behind on. Our rent is so extortionate being in Toronto it was difficult enough to try and cover that for Mike to stay home with me. Sometimes, ok, all of the times I wish I didnt have to worry about finances...as I said before I would take just health or just finances but its so difficult when you have to worry about both. It seems so unfair that some people dont have to worry about either but that if something happens with health in their family that money is not even an issue and one less thing to worry about. All I want to have to worry about is Fenn and if he is ok. I cant believe we have to go through the same surgery again in a few months and will have these problems all over again. It really put a spanner in my plans of returning to work this summer for sure which I am also bitter that I had to even consider due to the government not giving me maternity leave. Now I am force to stay home with Fenn so I am forced to be stressed on a daily basis about how to pay for bills and where to find money for food. So far we are eating well thanks to donations (THANK YOU) but in the near future who knows.

  I dont like the effect of morphine on Fenn. He needs it for pain but he wakes up wanting to play and we have to give him morphine, he is having a grand time and then all the sudden he can hardly stay awake. He is getting really frustrated with this whole scenario. At this point its probably better he sleeps through most of the pain but we are having to actually wake him up to make sure he is eating something and taking his medications...its really really hard to wake up a sleeping baby, it kind of breaks my heart. AND by the way if anyone has tips on how to make a baby take and keep antibiotics down I would appreciate it!

  Well we are just giving Fenn so much love right now, hoping he heals very fast. Things will be much easier when his incision heals, only to go through it again though. Right now we are just living day by day and not thinking to the future when we can help it, I mean, as a mother my mind wanders there, wondering if this surgery will even be successful. Lets hope so cause I dont now how much more of this mother superhero strength I have left.

before surgery.

Some more pictures of my Little Hero

I changed my blog background today because the old one was making the pictures transparent and hard to see. I have a few more pictures of Fenn to put up. Enjoy.

With Granny at the hospital.

With Auntie Sarah (Auntie Titch Titch)With Grampy with all the Iv's still in.

His 'stash'.Second day and in the bumbo watching cartoons. Unbelieveable!

With Auntie Amanda.

With Real Auntie Heidi hehe! (The other Aunties are my two best friends!)

the big day-WARNING some GRAPHIC pictures

  Surprisingly  I handled this week so far with alot more courage than I expected. I didn't cry at all until the one night when we had the terrible nurse because I felt so bad for Fenn being in pain. Some of our family waited with us during the surgery which distracted us and when we thought we had to wait an hour in the surgical waiting room it ended up being more like 20-25 minutes before Dr. Forrest came in and surprised us. He came in with his backpack on and ushered us into a room with a smile on his face, I was so happy to see that smile. He said "Well, Fenn wins the cuteness of the year award, none of the nurse wanted to give him back". Then he told us that all went well, his heart stopped for a bit (said nonchalantly) but he did excellent. The proof of how excellent was getting to go home after two nights.  ICU night was tough cause Mike and I were cramped on a small uncomfortable bench and didnt have Fenn with us so there was no way we were going to sleep that night. Night two I had no sleep because of the terrible nurse so I stayed up all night with Fenn trying to comfort him. We were very happy to come home and sleep and Fenn was very excited to be at home. He is so used to my family being here now though I think he will actually be sad when they leave.

  It turns out it takes 5 of us to take care of him at this point so I dont know what Im going to do. I hope his stitches and around the distractors heals quickly and without infection because its making everything difficult. Im probably worrying alot more than I need too. I find it hard to hold him myself because Im scared of hurting him. He's mostly all smiles and laughter though, back to reading his books (especially 'Im the BIGGEST thing in the Ocean' a book about a squid) He accumulated quite a few new books and teddy bears in his short stay. Mommy and Granny kept visiting the gift shop during the surgery, somehow buying him stuff made me feel better. 

  Big thank you to my mom and dad and sister Heidi who literally spent every day all day at the hospital with us letting mike and I get out to eat and have little rests and entertaining Fenn...this is no doubt what real family are and I will never understand any family who is different than this.

 Now for some before and after pics...