Sorry, this has taken me forever to construct and compose!
June 18, 2006
Well this is it! I'm officially in labour. I have done everything I can to prepare for the birth and to try and avoid a repeat c-section. Little do I know it is going to be awhile before I see my son. A foreshadowing of his nature...he takes his time at things. It takes him almost 24 hours to get here.
June 19, 2006
Hayden Warren Heath Cohen enters the world, almost exactly how I had planned - no c-section. It is Father's Day. I am too happy for words and am not even that offended about the tear his giant head has given me. He is nine pounds - heavy! When they place him on me, I notice his feet look funny...crooked. I think "clubfoot?" but I am so happy that he is here I can only feel joy!
After awhile I finally ask about his feet since no one is saying anything about them. The midwife tries to be nonchalant about it as she checks him over. Eventually she remarks that she needs to go and get the pediatrician. His feet are examined by the pediatrician who confirms he has bilateral clubfoot. She tells us about the treatment that Children's Hospital has involving Botox. The clinics are on Tuesday, so we have a couple of days to get to know our son before treatment begins. We are not aware of the journey ahead of us.
Hayden gets his first four sets of casts, each a week apart. The first set goes fine, but he's only two days old. The next three sets of casts, he cries and we have to return to the hospital on two separate occasions to have slipped casts replaced. Everything else is going well, nursing is fine and he eats well. He gains five pounds in five weeks and a half a pound a week thereafter. He is a moose.
For Hayden's fifth set of casts, a spray adhesive is applied underneath the underlayer to prevent slipping. He is rapidly gaining a reputation, both for being a "cast kicker" and "the purple screamer" - unfair descriptions considering somebody different applies the casts each time he is there and who wouldn't cry if they were being held down by four people? Hayden also develops an upper respiratory chest infection that Kestrel starts with, then Hannah receives and it is passed along to Doug. I am the last to get it, the next six months are some sort of hellish nightmare of coughing so hard you can't breathe. Hayden coughs so hard he can't catch his breath and he vomits frequently. One day I have to call the ambulance because he is turning blue. By the time they arrive, the blockage has come out through his nose and he is okay. Four people show up with tons of equipment - comforting to know that good care is just around the corner (literally - the ambulance station is one block away).
Hubby's brother and family visit and we head off to Vancouver Island for a much needed break. We stay at some pretty fabulous places and enjoy the down time. The highlight for me is High Tea at The Empress...expensive, but you get a tin of their special blend to take home. Wonderful!
At Hayden's 7th casting, the casts have been on for two weeks and his skin is starting to break down. He receives his first Botox injection in each tendon. It is most unpleasant and I feel sick at the end of it. I cannot describe the screaming. We return the to hospital the next day for a slipped cast. Sigh.
Hayden has been cooing and smiling a lot and I have purchased a portable Ocean Wonders Swing for him....ends up being the most expensive chair I will have purchased for a child as he does not like either the swinging or the music!
Hayden is one spitty kid and I usually have to take a ton of spit up cloths with me wherever I go. He is by far my worst for this.
Treatment of his feet is not going well. He has several very bad episodes with his skin under the casts and the smell is beyond belief. His feet and legs are so sensitive, that he jerks them away and screams each time you try to touch them. We end up giving him a week long break from casts because I am finally starting to lose it at these visits. The break is great, I get lots of cuddles in! His skin heals and we go back to casting. He gets his second Botox injections - my mom accompanies me and sees how traumatic it is. Cast slips again. I am starting to lose faith.
My sister has visited a couple of times and it has been great to see her. I miss her so much when she is not around.
In addition to the ongoing struggle with Hayden's feet, we finally concede defeat in a continuing battle with mice in our house. The three year fight is ended abruptly with the visit of the friendly neighborhood exterminator. Yay!
Hayden is a much better sleeper than the girls ever were, although not stellar by any means. However, I have been having some success with sleeping him in his crib. My skin is getting itchy from him kicking me with casts while in our bed. He's such an easy baby - he hangs out with me a lot. Feed him and change his bum and he's happy!
Hayden is put into the boots and bar for the first time. Unbeknownst to us, his feet are not corrected enough to go in them. They don't stay on and two days later we are back at the hospital for more casts. I am also visiting the hospital myself for some post-birth issues I am having. Fun all around! A new underlayer is tried under the casts; cotton flannel. It is hoped he can try the boots and bar again after this set comes off.
I've been trying to get Hayden to take a pacifier because he nurses all of the time and I am constantly hungry and drained from the continual breastfeeding. He is still sleeping with us most of the time. He has started to grasp toys and put them to his mouth. He has hit his three month growth spurt.
Hayden's motor skills are improving and he grabs at toys. He is developing quite a personality! He breaks out in a rash and it is determined that it is some sort of eczema that is most likely caused by sweating. He "swims" when placed on his tummy and kicks a lot. He has his first baby cereal and LOVES it!
The new cast underlayer has failed miserably and Hayden's skin is essentially rotting. The smell is atrocious. I decide that he will NOT have casts on, no matter what. I cannot keep watching my son suffer this way. The doctor is kind of flippant about it all when we are at the hospital and she orders him into the boots and bar again. I am sensing frustration from her and defeat. The orthotist is skeptical about the shoes working - Hayden is not pleased at all. This is the turning point. While I am crying on the phone to my sister, she suggests an online support group. Oh, DUH! Why didn't I think of this sooner? I find one and join and am given immediate support. I am encouraged rather forcefully to go to a different doctor in our area who practices a very specific method of correcting clubfoot...our beloved Dr. Pirani. The shoes are once again not working out. Every visit is feeling like ritual torture and I am growing weary of the attitude of the doctor. She is supercilious and talks down to me if she actually ever addresses me. I am resolved to make a change.
Hayden finally gets his first set of immunizations because he has had casts on for so long that I didn't have the heart to add to his troubles. He comes through with flying colors. He is close to rolling over and he is a real love-bug. He loves to touch my face and stroke my hair. He begins solid foods and is most enthusiastic.
We have our first visit with Dr. Pirani. It goes very well and I am decided that this change will be made. Hayden barely fusses through the visit and the doctor is gentle. This bodes well for me. I have also met for the first time my friend Michelle whose daughter has right clubfoot. This is the beginning of a good friendship! Hayden will require more casts, a tenotomy and then the boots and bar. In the meantime I get to leave him free of anything for the next couple of weeks. A relapse won't matter, the damage has already been done. Hayden's feet have now become atypical due to all of the slipped casts from Children's. It is heartbreaking that this has occurred but I can't dwell on it.
Hayden's first casts go well. He has no skin problems due a different , more breathable underlayer beneath the casts and it really has become old hat to us. His right foot is corrected after only one cast and I couldn't be happier! Progress at last! His third set of casts have to stay on because the cast technician is sick that day, so I am disappointed. I just want my baby out of fibreglass once and for all.
Hayden is enjoying food immensely and tries to get at anything I might be consuming. He is teething and drooling on everything. He also has developed quite a sense of humour and laughs at most anything. I have tried to show him how to roll over with the casts on because I don't want him to fall too far behind developmentally. He now cries when something is taken away from him. He is growing like a weed and getting heavier by the day!
On the clubfoot front, Hayden has a small setback with his left foot. The third cast has been made too tight around his foot and his big toe has been pushing back causing his toenail to cut into the fleshy pad above it. It has begun to fester and ooze and reeks. I call Dr. Pirani and he instructs us to take the cast off and come see him the next day. I am feeling really down about the way things keep moving forward and sliding back. And with the prospect of four years of bracing still ahead, it isn't any wonder. Little do I know that the bracing will be a breeze!
Hayden starts to roll over from front to back in the casts which is wonderful! It is no easy task to do this while your knees are held immobile! He is about 21 pounds and is still teething. Apparently the gods of fate thought I didn't have a bad enough teether and have sent me one.
Hayden has rolled over from back to front and is very pleased with himself. He finally cuts a tooth, which is fabulous. There are visits from grandparents who are meeting him for the first time. He is babbling and shaking his head "no". He cuts another tooth, blessedly.
Hayden's tenotomy has been postposed because of the sore toe business from the previous month. Disappointment again, but now also anxiety. The day it is performed it goes really well! Unfortunately we all forget to take the forms of Hayden's feet to order his special shoes and bar. This will mean that he has to have casts for a few more weeks until they arrive. Sheesh! By the way, there are virtually no scars from the procedure - yesss!
Hayden has been trying out the exersaucer and he is not keen on it, really. He is also a giggle bug and I finally realize I can upload video clips of him to a video hosting website. Never have I had so much fun! He does begin to creep a little, which is encouraging and he is relatively mobile when on the floor. He's been enjoying his Bumbo seat because it allows him to sit up, something he can't do by himself because the casts are in the way and he can sift through a box of toys. It's fun watching him start to do these things.
Everything is going well with his feet. So far, that is, until another cast slips. Dr. Pirani is most upset about this and we feel it is because Hayden is just plain fed up with the casts and is fighting too hard during application. We are waiting for his special order shoes and they are taking awhile. The final set of casts start to damage his skin again and he ends up with an open wound on the back of one knee that later becomes a scar. I call the orthotist before our next visit and tell her to bring the other kind of shoes - I am finished with the casts, done.
Dr. Pirani says it is fine to put him in the shoes because his feet are fully corrected. It goes well and he doesn't seem to mind too much, until I get ready to leave and he completely flips out and screams for the next half an hour. I return to the hospital, there is no way I can take transit home with him like this so Doug is going to come and get us. The orthotist spots us sitting out in the waiting room and suggests that his skin is maybe really sore and gets some special bandages to cover it. By the time Doug arrives, he has settled down somewhat, but we have one hell of a night - barely sleeping for more than twenty minutes at a time. By morning we are frazzled, but Hayden seems to accept his fate and is totally fine with the shoes after that. His special order shoes arrive and they are wrong, so have to be returned! Argh! Two more weeks pass before we get the next set, but they come, they are right and they are worth the wait. They are lighter than the other shoes and look like Birkenstock sandals. He gets one hour a day out of the shoes and he begins to sit u p on his own. Finally I have my baby back. After seven long months of casting, he is finally free! I relish each and every precious hour with him out of his brace.
Hayden figures out how to roll over in the brace almost immediately, which is encouraging. His new special brace arrives in a couple of weeks and it is lovely! It is much lighter and the shoes look like Birkenstocks. We have to seriously try and get him to sleep in his own bed though, because he is bruising us with the brace. Most nights we are ducking as he is swinging it over his head. Also, I have noticed that my stroller has no foot rest, so my mom and I devise a neat little one and it works like a charm.
Hayden can clap his hands and he really enjoys his time out of the brace (one whole hour where he usually gets a bath). He bobs and weaves every time he hears music and it is so cute! He enjoys being in his Bumbo seat and playing with toys. He is teething again.
At the end of this month, Hayden gets to reduce his hours in the brace, yippee! This means that he can spend most of the day out of the brace (to a maximum of 12 hours) and can start learning to do some regular old baby stuff without a piece of metal hanging from his feet. Hayden starts physiotherapy this month and we get some good advice for trying to get him to bear weight, which he won't do at all. It makes sense because he has never been able to "stand" in your lap or anything due to constant contraptions on his feet.
This month is fairly uneventful and he begins to become more active and mobile. He is so sweet and smiley all of the time and is for the most part, a joy to be with. When I take him out in public, I almost forget he is around.
Hayden the Hamster boy crawls! That is the big news of this month and I couldn't be more excited. He is growing and developing at such a quick rate that I am constantly amazed. He likes to mimic things like sneezing and yawning and will voluntarily say a word or two.
Feet-wise, we are finally at the stage where we can relax. We don't need to book another appointment until mid to late summer and I am all smiles!
This is the biggest month yet. Hayden finally stands himself up and bears weight on his feet. And there is no stopping him now. He has discovered the full scope of his reach and he will go to any lengths to reach something, whether it is my computer keyboard or a steaming hot bowl of potatoes on the kitchen table. I see trouble in the future.
All in all, this year has had it's share of turmoil, but the joys have definitely won out. He is so precious to me, this my last baby and I am so excited to watch him grow up. He is very attached to me which pleases me to no end and I hope this bond stays. I have a hard time staying mad at him on the odd times that I am, he wraps his little arms around my neck and all I can think is "I'm glad you are here".