Day 41 of Life - July 29th

So another day has come to an end and our little man is having a fine day. His rate is still holding steady at about 1o. I, Ma, got to hold him again for a few hours today. He is getting very strong and has tried and tried and tried to pull out his ventilator tubing. I am sure in the upcoming days, he will find a way and succeed. Hopefully this will mean that he is strong enough to stop using the conventional ventilator and give another try of the Aladdin. His feeds are still going strong and have been increased to 15 cc every 2 hours. He definately looks more pink since his last blood transfusion.

Today, during his holding session with me, he threw up on himself and tried giving a good ol' yank on his tube. I think his little tummy was just upset because of all of the wriggling around he did in my arms. He wore a very, very cute blue and white knit hat and spent a lot of time with one eye open hoping the nurses were bringing him more food. He heard all about the nurses' mullet party, but failed to disclose any of the details to me. I think he must have signed a confidentiality agreement with them....

Tonight, I went drove off to Windsor to see all of the family at cousin Blarin and Sweetie's stag and doe. There were a ton of people there and everyone of the family ask to send the good wishes to Sha. Sha got a present that I will take to show him tomorrow from his darling little cousin, who has lots of red hair and the chubbiest little legs.

Pumping today, in the pumping room at the NICU, I was surprised by one of our male staff....poor guy...he will never look at me in the same way again...but the good news is, he isn't the first and probably won't be the last.

So, Ma and Pa are a very tired out couple, so I think we will retire to bed.

As per my insanity

Thank you all for your support during this most difficult struggle. It would be very easy for me to get caught up in all of the negatives, when in fact there are so many positive things happening right now.

I do find the suggestion of media attention a sweet suggestion, in this circumstance I do know that it would not provide me with the outcome and resolution that I desperately need. I do know, that in time, things will work out.

However, if in the future, you tune into the A channel and find me sharing my story with Nick Papparella, over a sauerkraut sausage and Diet Coke, with the weenie man, who is located infront of the hospital, you will know that I need to be sedated and driven to my therapist.

There are a million different reasons that I love the hospital and a ton of the people who work there. They are doing so many amazing things for people everyday. I could fill this entire blog with my positive thoughts. Please do not think that my previous comments reflect those of the network and are only that of the participator....haha.

Day 40 of Life - July 28th

Auntie has taken a much deserved vacation break to a cottage...so in her absence I will try to keep up this blog. Although, I am very certain that I cannot fill these big shoes she has left...but I will try.

My dear little man has spent another day on the ventilator. His rate is at 15 and is oxygen levels are currently around 40ish. He has started taking a dose each day of caffiene, much like his Ma with her Diet Coke addiction. This hit of caffiene, straight up, will hopefully inspire his respiratory system to work a bit harder and keep up to the demands that are being made on it. He has also been started on a dose of Aldactazide which will keep the fluid from building up within his lungs.

And as per his normal Friday routine, our little Turkey has had a blood transfusion top up and a chest X ray...which looked a bit better than his last one. He had a little spot on his head shaved for the transfusion, which is something that I am sure to look forward to having him do in the future on picture day, just before school starts....

Enough of the medical stuff, Sha is opening his eyes even wider then before, and is continuing on his path to a championship eating competition. He opens his eyes to our voices, makes some of the cutest sucking motions and even gives us glimpes of smiles. His little arms are starting to look a bit more meaty and all of the nurses keep him entertained with stories of their bodies, makeup and fashion. It really is not a surprise that he has continued in the back room as I think he is becoming more and more like his Uncle Kabooblah, with his harem of women. Sometimes I think he desaturates just to get some pretty lady to come over and rub his bum.

It dawned on me yesterday, after a minute of rubbing is tiny belly, that his belly button has fallen off...now, I am sure the Mom's in the readership are thinking...no kidding, that probably happened weeks ago...but this is the first time it hit me that it was missing. All of the medication in that first little while, means that I really don't remember seeing it at all. So our wee man has an outie bellybutton...awww.

So, enough of my bragging about all of the things my kid can do. I went outside tonight and thought about how I exciting it will be on his first day out to show him the sky and maybe the big dipper.

Love to all,
N

Day 39 of Life - July 27th

The little one has had some ups and downs today, but seems to be back on the right road. He had some bradycardias today (meaning his heart rate slowed down), so they had to temporarily hike up his oxygen rate to get over these episodes. Before these episodes started, he was at a rate of 10 and has now made it back down to 20. They will do another blood gas and try weaning him back down to a rate of 10.

Before the episodes, they had also discussed extubating him again...but obviously, because the turkey doesn't know how to behave sometimes, they have stopped talking about this for now.

Sha is recovering from his rough day...and hopefully Ma can recover from hers.

Posting from Ma - "Insanity"

Below is a post from Ma, regarding her ongoing struggle with the Human Resources Department and all of the other various players who keep jerking her around. (Sorry, I'm getting really ticked too!!!) So, the following post is dedicated to all the "helpful" people in the world!

I swear that if it is the last fricken thing I ever do…I will not let another woman go through the benefit issues that I have had to endure. This long journey with benefits has now reached the peak of insanity. Deep breath…spoke to my new friend…the counsellor today. Just when I finally think I see an end in sight…poof. I get the …we have no idea how to do that…line and a hundred more people get involved and there is no one available to take my calls…and they will call me back…but just kidding…no we won’t. I wish I was able to spend the amount of time that I invest each and every day waiting for these people to call me back on spending time with my son, instead of talking endlessly about the same exact thing over and over and over again to people who really don’t have any personal stake in my life, nor do they feel compelled to go the extra distance to provide me with any accurate information or to help me.

Each new person would like me to start at the beginning, please. And then about one quarter of a way into the long, convoluted story, they cut me off and say…ok then…have you tried this…holy crap. All I do is try. Is it too much to ask that someone could actually try to understand the whole thing in it’s entirety…which I happen to know is complex and long and over the top, because it happens to be my life. I don’t even try to explain it anymore…I just say…it is long and I have gotten nowhere. Except Crazyville, I have gotten there. A one way ticket, I’m starting to think.

It just burns my ass to think of all of the extra time and energy I put into my job. I’m not saying I’m brilliant or that I do everything perfect. Nope. But I do everything I can to the utmost of my ability and I try to give everything I have to do a good job. I might not be proud of the outcome of every project; I do make mistakes all the time, but I am proud that I have never willfully neglected anything and have always tried to do my best. I might not be an important player or have clout or worry about my political future…but I do help people. And sometimes I break rules to do that. I know, it is shocking. A campaign of shock and awe.

I think the institution, not my actual bosses, has forgotten of all of the time that people spend away from families, doing overtime without asking to be compensated, and for all of the weekends that employees spend pouring over paperwork, all the while being away from families and taking away from the things that really matter. But this is the repayment I suppose. It really is the institution and all of the bureaucracy and mindless paperwork. I think everyone has forgotten that there may just be real people involved, real women with real babies, with real issues.

I really am tired of hearing…well…these are the rules. Yeah well, I know your fucked-up manual says that I would have a pregnancy for 9 months and then I would be in the hospital for a couple of days and then I would go home with my baby and Pa and I could share our time off and live happily ever after. No shit. But that doesn’t happen to everyone. You see, this is a different type of pregnancy and a different type of birthing story. Not the kind you see on TLC where the ending is clear and the baby is perfect and the Mother is smiling. So maybe you could have some compassion and for once break a few of those rules…because maybe you might just also be a woman and you might care a bit about moms and babies and the fact that I love what I do and that if you don’t turn me into a raving lunatic, I might just return to work after this shitty part of my life is over. Do you honestly think I wanted this to happen.

Did I happen to mention that my baby happens to have to live where I work and that I happen to have had some people I know well, look at some very private parts of my body. Do you know that I have to ask someone before I can hold my own baby and that right now other people feed him and take care of him and that I don’t get to do any of the normal things. If one more person I call starts a sentence with, well normally benefits…blah blah blah…well my normal life doesn’t really look like this and my normal is so far gone I can’t really even remember it. Normal doesn’t include having to visit your child in a hospital bed.

And, it’s not the money part…we are doing ok…you can stop worrying, it has all come down to principles…what mother should have to endure this stressful situation?

And I can’t forget to send a big ol’ thank you to…the EI people, who you get a different person everytime you call, who tell you a hundred different answers, and then they want you to talk to a specialist because they have no idea what the answer is…but they don’t take incoming calls, so they will call you. But they don’t. Over and over again. And for not having your documents in line with the documents from the Ministry of Labour. And a thank you to the Ministry of Labour…your documents are not in line with the EI documents…so all of the helpful advice is not helpful at all. And thank you for the letter to advise me that you got my call…in this world of technology, I am pleased to see that we are corresponding by snail mail….what an original thought…so convenient and timely. And to my health benefits, who won’t pay for my breastfeeding equipment, does that make any sense??? …it is to pump food so my child can get healthy or for my blood pressure monitor, which I think is off of the scale right now. And there are a few departments full of people that I would also like to thank…but I think that will be a personal thank you…maybe I’ll invite them all over to his bedside to sit beside his ventilator, praying he will be ok, while watching him fight for every breath, and to help me explain why his Mommy and Daddy won’t have enough time to share now and how we won’t be home with him for an entire year and how my top up and pregnancy leave got all mixed up. Are you all insane…or maybe it is me???

And I suppose I should not be at all surprised…considering a few of the moves that have been made lately…some people will know what I mean. Not that I have time to rehash everyone’s issues…but damn, how can that be right. I guess life just isn’t fair, that has to be the understatement of the day.

And it is amazing, that there are really people out there still trying. A real thank you to them. You know who you are and I owe you so many things.
If whatever doesn’t kill you, makes you stronger, than I am going to be damn strong by the end of all this.

One day, I am sure that I will look back on this moment and laugh and laugh. But right now, I can’t help but think about all of the women that have been screwed over by a screwed up system. This has become more intense than when I actually had a job to go to, that I think I was pretty good at…now instead I get to wake up every day and fail yet again at finding a resolution.

The counsellor seems pretty nice, all of the things she said were great. And emotionally it helps to have more strength to continue, and I am taking her advice to post this on the blog, so I don’t have to keep rehashing the same thing over and over again to everyone. I told her considering the readership I didn’t know if it was a good place to vent about work related issues. She said I should do whatever makes me feel better, stop worrying about repercussions and to quote someone I know…fuck em all but 6, cause you need the pallbearers. She thinks it might just be therapeutic to put it out there.

Promises of being paid, checked today…nope…another just kidding. Failures of trying to find a way that I might possibly be able to have time with him, while he is in the hospital, so damn sick, and failure to find a way to spend the year off with pay and topped up, that every other Mom gets to have to actually enjoy their child. What a joke. I can say that I am being punished for having a very ill child. Financially, emotionally and physically.

Phone call…I’m back…ok good, they still have no idea what to do. Perfect. This thing just goes on and on and on. Yesterday I screamed in my car from my Mom’s to my house. Full out screaming at the top of your lungs at 90 km/h can be very therapeutic… People are going to start to think I am crazy, or maybe I am…do crazy people know that they are crazy…the more I type this sentence, the more crazy I think I become. I have never been to the loonie bin…but I think it might be a nice getaway.

I have so many doctors’ appointments now that they could fill a calendar. And now I have counselling appointments…but maybe it will help. She was right, I am starting to feel a bit better.

So, Sha had a shitty day, just like Ma, rate back up and bradys. And I wish I could have been there to take care of him and just talk to him and worry about him. But instead I am housebound, waiting for more phone calls from people telling me that no one knows anything. I can’t travel because then they all have to have my cell number…which no one seems to know how to use. And I can’t have my cell on in the hospital. And I can’t make the unit secretary my personal secretary, takings hundreds of calls on my behalf. So instead I have to wait here at home. Ugh. I just hope there is some piece of me left to take care of him and that I am not so burned out by this…

Goody…it is 400. Time for everyone to run from the building, home to their families. Another day wasted. Days failed at resolution…37.
I suppose I could just accept the things that they tell me and just move on with life. Mom asked me, is this worth it…and sometimes, I think it really isn’t. Sometimes I think I should just take whatever is offered and agree. But then I think, I just want my fair shake. I really bet that the CEO has never had to beg for a cheque or go weeks without being paid or worry about the next year with a sick child. I bet not.
So, half a day crying about this stupidity is probably more than what it is owed. And the other half worried about the baby. Thank god, I don’t have to worry about Pa. He seems to be holding up. I swear if someone tries to label this as post partum, I am going to lose it…I think I’m just postal.

Day 38 of Life - July 26th

The little man has now reached 31 weeks and 2 days gestation and continues to do well. He is currently at a flow rate of 10, in approximately 44% oxygen. He has officially been given the diagnosis of bronchopulmonary dysplasia (or chronic lung disease). This basically refers to the scarring and inflammation that is occuring in his lungs from being born too early. After being on ventilation for 28 days or more, an infant is given this diagnosis. This will, in the future, leave him more vulnerable to respiratory infections, such as influenza and respiratory syncytial virus (RSV), which we will definitely have to discuss in more detail in the future. For now, this isn't going to make too much of a difference in his care or progress (we hope!).

Sha has also received another dose of Lasix, but will be put on Aldactazide (a slower acting diuretic) to help with his fluid retention. The Aldactazide will also prevent him from passing important nutrients (ie. potassium), which he has been doing with the Lasix.

Other than that, the Turkey is great! He is wearing clothes for the first time today...a little onesie with little bears playing with different coloured balls. Oh so precious. Also, Grandma Cush is here to visit and is snuggling him close. Ma is going to photograph the event...so pics to follow! Grandma says that its a special moment to hold him close and feel him breathing and his little heart beating.

A Letter From Ma

Below is a letter that Ma wrote before Sha was ever conceived. (I had considered calling this post "Ma's Letter to Her Unborn Child", but was afraid that some of you might take it the wrong way!!!) As most of us know, Ma has great intentions sometimes, but isn't always the greatest with sentimental stuff. She's got the biggest heart I know...but the sentimental stuff isn't her strong suit! She had intended on keeping a pregnancy diary and this was the first entry, however, it didn't go all that well... So, here's to Ma and her attempts at being something she's not...and for loving her unborn child enough to try.

Well…I just thought I should write down some of my thoughts on the idea of baby McFadden. Wow. Even that is a crazy thought.

I went to my pre-pregnancy visit to the doctor’s office today. So far, I think we are off to a good start. He recommended some prepregnancy vitamins with folic acid. So I’m going to start taking them today.

Your Daddy is so excited. I could just cry.

Names:

Xander McFadden – from Daddy
Ava Carolann McFadden – from Mommy

You're not even made yet, but we have so much love for you already. How exciting for us. A family. Alright, I’m crying….so I think I need to stop for tonight. Probably hormones.

Love,
Mom 2005-11-16

Day 37 of Life - July 25th

Piggy is now receiving 14 cc of breastmilk and is definitely ready for more. Ma held him for a few hours this afternoon and he kept turning his head towards her, opening his mouth, sticking out his little tongue and making sucking motions!!! What a little turkey!!!

His oxygen has decreased to a flow rate of 10 in approximately 30% oxygen. They figure that in another day or 2 they will try him on the Aladdin again. This is probably a good thing, as the little sucker keeps trying to pull out his intubation tube!

He also has a little red spot on his forehead, about the size of a pin prick, which could either be a strawberry birthmark (like his Uncle Kabooblah) or a hemangioma (a collection of red blood cells that form a "growth" on the skin). There is no way to tell at this point, as it is too early to tell. Most hemangiomas will resolve within the first 2 years of life. So, at this point, all we can do is wait.

This Is For You, Betty Boop

Pa and the "other" son, Hyde

Grandma McF - Bonding Time

Snuggle - Pa!

Day 36 of Life - July 24th

A busy day for the little one today. He had a chest X-ray, as they suspected that he had fluid in his lung again. The X-ray confirmed this suspicion and Sha has now received another dose of Lasix (the diuretic) to help get rid of the extra fluid. Despite this, his flow rate is still good (at approximately 20%), but his oxygen requirements are higher (sitting at about 68%).

The Turkey also had his 1-month follow-up head ultrasound today, which I am happy to report looks great. And he is now receiving 13 cc of breastmilk every 2 hours. Man, can this kid eat!!!

He has also had company galore today. Grandma McF visited and even got to hold him for awhile. Ma was at her daily post beside his bed and Pa was going to join her after work. On top of that, Grandma and Grandpa Cush came by for a little visit and I popped in just to say "hi". Overall, an exhausting day for the little monkey...but he seems to be holding up well. The human contact portion of his care is incredibly important, but sometimes neglected. Pa also got to kangaroo him last night...which was an awesome experience for both of them...and likely for Ma, too!

Day 35 of Life - July 23rd

Thankfully, it's been another quiet day for the little one. His flow rate is down to 20 and he is quite happy and content. He's only receiving 11 cc of breastmilk every 2 hours...which probably doesn't please him much, as we all know how he loves his food!

He is now officially back to over the 1 kg mark...although Ma didn't say his exact weight. And to celebrate this momentous occassion...Pa might get to hold him, depending on Sha's behaviour and how busy the NICU is. Hopefully this will happen, as it is a nice way to celebrate passing this milestone.