Counterbalanced Coquette

Article in Todays Parent Magazine

2012-02-07T21:12:00.001-05:00

I promised that when I found the online link for the article I was interviewed for in Todays Parent magazine that I would post it. Here it is. :)

http://www.todaysparent.com/health/moms-health/what-prenatal-testing-can-tell-you

Nominated for a Peter Tweeter Award! #petertweeter

2012-02-04T22:22:00.001-05:00

I live in Peterborough, Ontario. It is an interesting town, unlike any other, particularly within the way people interact with one another.

The newest award in town...the PeterTweeters! Yep, awards for people who use Twitter! March 1st is the night the awards are being given out, at Splice in downtown Peterborough.

I went to check out the voting, only to find that I was nominated in one of the categories...Category #6 Mommy Tweeter! How the heck did I get nominated for this??!! I think it's very amusing, especially since I'm up against some amazing people! (There's no way I should be up against these people, let alone nominated at all!) One writes a blog for Todays Parent magazine, another writes parenting books, another has a fabulous blog, etc etc...

Anyway, if you want to take a look, and vote (or not!), here it is:

http://www.thewolf.ca/petertweeter.aspx

I am @canadiancindyb on Twitter. :)

February Happenings

2012-02-02T18:46:00.002-05:00

It's February!

I start back to work on Sunday after having been off for the last 6 mos on my combination of sick leave and "maternity" leave. NOT looking forward to 7am shifts when I've been getting up at 8 or 9am regularly!

In a couple of weeks we have our follow up appointment at Sick Kids hospital. They just did the Mortality and Morbidity conference for Kyle's case in the last couple weeks. The appointment is really just a "closure" appointment. We'll be meeting with our metabolic genetic specialist as well as genetics counsellor. We'll probably also unofficially go see our Social Worker, Transplant Co-ordinator, and possibly one of the doctors and counsellors across the road at Mount Sinai. We have "standing" appointments with all of them to just drop in at any time!

Mike wants to go to the auto show in Toronto...a yearly event for him. I like going, but only if it's on a weekday evening...the weekends are simply too crowded for my liking.

At the end of the month, we'll head up to Sudbury for Mike's grandmothers 90th birthday celebration. It's also the weekend of my sister in law's birthday who also lives there.

Also, the end of February will start tax season...I'll be doing income taxes for people again this year as a registered E-Filer.

January Wins

2012-01-31T17:05:00.000-05:00

My wins for January...

$50 prize pack from Sage Accounting @simplybysage on Twitter. A $25 prepaid VISA gift card, a travel coffee mug (that dh immediately claimed for himself!), post it notes, highlighters, pens.

$100 in pre release books from the December Exclusive Reads contest from Penguin Books Canada in the form of 4 books that don't come out in stores until between Feb and April. I love getting books!

Total: $150

Books #5-7 for 2012 Reading Challenge

2012-01-30T11:57:00.005-05:00

Books #5-7 for my #50BookChallenge for 2012

5) The Ape House by Sara Gruen. The author of Water for Elephants. I wasn't a huge fan of Water for Elephants, but thought it was ok. But I loved The Ape House! I thought she did a great job in researching for this book. I felt drawn in by the characters, and by the plot as well. This is not a book you will quickly forget, and I think you should read it! 4.5/5

6) Everything was Good-Bye by Gurjinder Basran. This book hasn't officially been released yet, but I received a pre-release copy from Penguin Canada. It is about an Indo-Canadian woman in BC who is sorting out what decisions to make in her life. She struggles with remaining true to her Indo roots, or exploring her Canadian freedom. I enjoyed the cultural dynamics of this book, but didn't identify very well with the characters. 3.5/5

7) A Surrey State of Affairs, by Ceri Radford. Another pre-release book from Penguin Canada. This book is being released in April, 2012. The book is a fictional blog format book of an upper middle class woman in Surrey, UK. She is meddlesome, annoying, and naive, particular in regards to the lives of the lives of her husband and children and yet you feel compelled to keep reading to see if she ever changes her ways. To want to keep reading about a character you quite dislike is a compliment to author! 3.5/5

Car Cover Giveaway Winner

2012-01-30T10:42:00.002-05:00

The car cover giveaway winner picked by random.org is comment #25 from CoraRose.

I have messaged CoraRose and she has 48 hours to respond! Congratulations!

EmpireCovers.com American Armor Car Cover GIVEAWAY!

2012-01-20T14:28:00.000-05:00

Do you ever wish you could protect your vehicle from the elements while you are not using it? Perhaps, like me, you don't have a garage to store your vehicle in. Or maybe you have a garage, but it's used for storage, an office, gym room, or has another vehicle already in it!

Do you travel, and leave a vehicle at home? Protect it with a car cover from Empire Covers!

I live in Ontario, Canada, where the weather just isn't appropriate to be driving all vehicles through the full year. You need to protect them through the harsh winter months in order to enjoy them fully in the summer.

Empire Covers has cover size options to fit 99% of all vehicles. Car Covers, Truck Covers, SUV Covers, Van Covers, Station Wagon Covers, Motorcycle Covers, Boat Covers, Limousine Covers, and ATV Covers.

A video of their factory.

And here is one on how to put your car cover on. Notice how easy it is!

The American Armor Car Cover is 100% waterproof, and features an incredibly soft micro-fiber lining. The Dupont Tyvek outer layer stands up to strong UV rays and downpours. The American Armor cover is an all-american product, manufactured entirely in the USA, and is exclusive to EmpireCovers.com. It features a full elastic hem, and is breathable to prevent mold and mildew growth. This cover comes with a 5 year warranty.

At a regular price of $299.99, this fabulous car cover is a good investment to prevent against rust and element damage. Right now, it is 15% off!

Empire Covers is giving away an American Armor Car Cover through my blog, Counterbalanced Coquette.

To enter: Post a comment below about your favorite car...past, present or future (dreamcar). Entries accepted until Thursday January 26th, at midnight EST.

Extra entries: (post a separate comment for each entry)
1) Post this contest somewhere online (Facebook, Twitter, blog, forum, etc) and leave me the link for it.
2) Like Empire Covers on Facebook (leave me your FB name so I can verify that you did it)
3) Follow @Empire_Covers on Twitter (leave me your Twitter handle so I can verify)

Open to residents of both Canada and the US.

Good luck! Winner will be chosen by random.org and will have 48 hours to respond once chosen. If winner does not respond, a new winner will be chosen.

Still Alice Book Review. #50BookChallenge Book #4

2012-01-20T11:36:00.001-05:00

I have to admit, that book #4 on my #50BookChallenge for 2012 was a difficult one to get to!

Originally, I started reading The Postmistress, by Sarah Blake, and read about the first third, but couldn't get into it. I wasn't enjoying reading this book. It's pretty rare that I stop reading a book! But I put it down, and brought it back to the library.

Next, I picked up Sisterhood of The Travelling Pants after my 10 year old finished it. I had heard that it was a good book, so thought I would read it. But...after reading the first couple chapters, I realized I had already read it!! I skipped ahead to a chapter in the middle of the book to confirm, and yep, I'd already read it. Sigh.

Finally, I got to the real book #4, which was Still Alice by Lisa Genova. It is a book about a woman with early onset Alzheimers Disease, told in first person. It was a fascinating read, and you actually feel her frustration, confusion, and feelings of being lost in the book. It is also a very interesting story regarding the family dynamics when a stressful medical situation touches the family, and how each family member reacts to it.

This book was as good, or better as it had been made out to be in the media and with friends. I think you should read it!

The next book on my list to read is Ape House, by Sara Gruen, author of Water for Elephants.

1 in 100 Canadian Births Conceived With IVF

2012-01-11T17:07:00.001-05:00

This past Saturday, the Globe and Mail newspaper had an article regarding PGD - pre implantation genetic diagnosis. I plan on writing more about that topic in the future, but in the meantime, one of the statistics that was in the article was that approximately 1% of the live births in Canada were conceived via IVF - in vitro fertilization.

The 1% quote is pretty close. In 2009, there were 380 863 births in Canada, and 3160 of these were via IVF based on the statistics stated below. This is an overall rate of 0.83% of births were via IVF, which can easily be rounded up to state approximately 1%.

I know a number of people who have used IVF in order to get pregnant, but I had never considered the overall percentage before. I'd share one of cute pictures of friends children who have been conceived by IVF, but even for those who are open about the conception, it feels a little too public to request permission to use a picture.

One in one hundred children being born are being conceived by IVF. This means that you probably know a child who was conceived in this way, but you probably just don't realize it, since infertility, like miscarriage, is considered a private issue by many Canadians. Both are starting to be talked about a little more.

I looked up some statistics on IVF in Canada. According to the news release from the Canadian Fertility and Andrology Society (CFAS), the following are statistics that have been compiled from all 28 fertility clinics across Canada.

"Live birth rates were reported for a combined total of 10,532 IVF treatment cycles (including intracytoplasmic sperm injection [ICSI]) undertaken in all 28 IVF centres in Canada in 2009. There were 3332 IVF/ICSI treatment cycles performed in 8 centres in Western Canada, 5015 cycles in 14 centres in Ontario, 1875 cycles in 5 centres in Quebec, and 310 cycles in 2 centres in Atlantic Canada.

The overall live birth rate was 30% per cycle started, 33% per egg retrieval procedure, and 35% per embryo transfer procedure.

71% of births were singletons, 28% were twins, and 1% were triplets or more.

A healthy term singleton birth occurred following 16% of cycles started, 18% of cycles having egg retrieval, and 19% of cycles having embryo transfer.

The live birth rates per cycle started, by age of the mother, were:

40% for women under 35 years old

29% for women aged 35-39 years

12% for women 40 years old and over.

The chances of a healthy term singleton baby per cycle started, by age of the mother, were:

21% for women under 35 years old

16% for women aged 35-39 years

7% for women 40 years old and over.

The proportion of babies with congenital anomalies was not different from that in the population of women conceiving naturally.

The miscarriage rate of 17% per clinical intrauterine pregnancy is in keeping with that for natural conceptions.

Preliminary results were reported for a combined total of 11,718 IVF/ICSI treatment cycles undertaken in all 28 IVF centres in Canada in 2010:

The overall clinical pregnancy rate was 34% per cycle started, 37% per egg retrieval procedure, and 39% per embryo transfer procedure .

75% of pregnancies were singletons, 23% were twins, and 2% were triplets or more.

A singleton pregnancy occurred following 23% of cycles started, 25% of cycles having egg retrieval, and 27% of cycles having embryo transfer.

The clinical pregnancy rates per cycle started, by age of the mother, were:

43% for women under 35 years old

34% for women aged 35-39 years

18% for women 40 years old and over.

The singleton pregnancy rates per cycle started, by age of the mother, were:

30% for women under 35 years old

23% for women aged 35-39 years

12% for women 40 years old and over.

Complications occurred in fewer than 2% of treatment cycles.

Live birth rates for assisted human reproduction cycles started in 2010 will be released when they become available.
The CFAS makes these data available for reference and education."

I'm sure these numbers would be even higher if it wasn't for the cost and accessibility. The cost is much too high for many people to even be able to consider the option of IVF. At thousands of dollars per IVF attempt, the costs are prohibitive to many. Secondly, accessibility is a concern for those who do not live in urban areas where there is a fertility centre.

For people who live where I do, it requires a daily 1.5 to 2.5 hour commute each way to a clinic for numerous days during a cycle. How do you balance travelling that long for appointments while also maintaining a job?

Shanghai Girls - Book Review

2012-01-07T20:56:00.000-05:00

One week into January, and I've read not one, but three books! The first one I already reviewed on my most recent post.

50 Book Challenge.

#2) Shanghai Girls, by Lisa See. I chose this book for our monthly bookclub based on the website http://www.WhatShouldIReadNext.com I was trying to figure out what to read next and typed in "What Should I Read Next" into google, not expecting anything like this site to come up! You type in the name of a book that you liked, (I typed in "Secret Daughter"), and the site comes up with a list of books! I had read, and enjoyed, most of the list it provided, but this was one that none of us in our bookclub had read.

This book follows the lives of two sisters who are sold into marriage by their debt ridden father from China into a life in the USA. It talks about many political issues between the USA, Japan, and China as part of the historical context of the book, including the Nanjing Massacre, the rise of Mao in China, Angel Island in the US, and the Chinese-American issues and the way the USA treated Chinese citizens.

I have to admit, that up until a couple of years ago, I was fairly ignorant of these issues, and until this book had never heard of Angel Island. However, two years ago, we hosted a student from Nanjing in our home for 4 months. She would become very offended if people thought she was Japanese (we had hosted Japanese students previously, so some of our friends assumed she was from Japan as well). I must have asked at one point why she did not like Japanese people, and she was surprised that I did not know about the Nanjing Massacres where thousands of Chinese were raped or killed by the Japanese when they overtook Nanjing.

If you would like to read more, here is a link to an article about it on Wikipedia.

The 60th anniversary of Mao being instated in China occurred while she was with us, and she streamed part of the celebration online to show us, including the military parade. The politics of China are fascinating to learn about, no matter which side you of the equation you belong to. This book will allow the reader to read a little about characters who are both for and against Mao.

3) A Second Cup of Hot Apple Cider, collection of short stories. This book was given to me for Christmas, and is a collection of short stories, both fiction and non-fiction, written by Christian Canadian authors. One of the authors is a friend of the person who gave me this book, and she signed her story in the book. My favorite stories were the ones that made me cry. Lost: One Green Scarf, a non-fiction story by Vilma Blenman, about how losing a scarf brings back the memories of losing two children to stillbirth, as well as Live Life to the Full, a non-fiction story by Evangline Inman about her son dying were my two favorites. They hit close to home having had two children of my own die neo-natally.

The Virgin Cure - Book Review

2012-01-04T23:07:00.000-05:00

I joined the Random Reader Challenge! The current challenge is in the genre of Historical Fiction.

The current challenge was to pick one of the following books, read it, and write a review!

The book list was as follows:

The Winter Palace by Eva Stachniak
The Virgin Cure by Ami McKay
The Paris Wife by Paula McLain
Midwife of Venice by Roberta Rich
The Salt Road by Jane Johnson
Madame Tussaud by Michelle Moran
Anything in the Outlander or Lord John series by Diana Gabaldon

I had not read any of these books, and my first thought was that this would be a great way to try downloading a book from the library, which I have never done. However, I found that all these books either had a long waiting list for digital copies, or were not available digitally from my library. So, scratch that idea.

Next, I decided to look up the actual book copy availability of The Virgin Cure, by Ami KcKay. I chose this book because I read her previous book The Birth House last year, and absolutely loved it. I really appreciated the amount of research that had obviously been done for this book. The main library has six copies, but again, there is a waiting list of eight people for this book. However, what many people don't realize, is that our library has a special "7 Day Loan Quick Book" section.

From this section, the books,
1) have a 7 day loan instead of 21 day
2) only two books can be taken from this section at a time
3) no holds can be placed on these books
4) you cannot renew books from this section
5) there is a $1.00 per day, per book late fine for these books.

Many books that have a long waiting list can be found in this section! So even though this book had a long waiting list, I was able to take it out! And reading it in 7 days is never a problem for me. I finished this book in a 24 hour period. I didn't time it, but I'm guessing the book took between 2 and 3 hours to read.

The Virgin Cure is a book about the life of 12 year old Moth in New York City in the year 1871. Yes, that *IS* her name! She lives in poverty, with a Gypsy mother and absent father, in the slums of New York City.

She dreams of a better life, and her mother sells her to an upper class family where she becomes an abused employee of the household. With help, she escapes, only to go back home and find that her mother no longer lives in the home she grew up in. She has disappeared.

Living on the streets on her own, she is taken in by a home that trains young girls in the profession of being a "whore". She meets other young girls in this home, and is trained in how to become a part of this profession.

During her time in the home, she meets Dr. Sadie, a female doctor in a time when this was not a typical role for a woman to have. Dr. Sadie attempts to take Moth under her wing to get her out of the home, as she realizes how young and innocent Moth is. Unfortunately, she is not very successful in her attempts.

Dr. Sadie brings Moth with her to see a girl who is suffering from syphilis, which they got as a result of being with men who were afflicted with the disease. In this period of time, it was thought that by having intercourse with a virgin, the man would be cured of his illness. This is where the title The Virgin Cure comes from.

I've never written a book review on here beyond whether I liked the book or not. I don't want to give any more info away though, because then you won't get to experience the book for yourself.

I did quite enjoy this book, and once again, appreciated the amount of research Ami McKay obviously did in putting this book together. I also enjoyed the styling, where, although the book was written and told by Moth, there are side notes and additional pages added in by Dr. Sadie that give the reader historical information.

Thanks to BookLounge.ca for putting this challenge together. If you want more info on the challenge, or would like to try it for yourself, click on the BookLounge.ca link.

I will be adding some, if not all, of the other books on the list into my "to read" list.

First book of the year complete for the #50BookChallenge. :)

2011 Final Winnings Tally

2012-01-03T08:58:00.000-05:00

I posted back in early September that my winnings so far in 2011 was up to $790. I had actually forgotten about one win that I had in the very first week of the year, which was for a phone through Mobilicity. I'm going to guess the value at about $110.

Since then, I have won two other things. Corel software valued at $150, and a $50 gift card to the Real Canadian Superstore. I bought myself a couple new mini loaf pans, a couple books and a bit of food with the gift card. Both of these were from blog contests.

So...my total winnings for 2011 comes to a grand total of $1100!! Not as much as the $3000 in winnings in 2010, but pretty darn good.

My favorite win of the year was my Motorola superphone...absolutely love it and I will be writing a review about it in the next few weeks.

My nine year old daughter has now discovered the fun in winning as well. She came home from school about a month ago, and she had won a $25 gift certificate to spend at the schools Scholastic book fair. She was absolutely thrilled! She was able to pick out 4 books, some pencils, stickers, and bookmarks with her money.

Online meets Real Life

2012-01-02T09:02:00.000-05:00

Look who I met! It's @chancesmommy aka Christine from Twitter!

She is on the left, and I'm on the right. I'm @canadiancindyb on Twitter

We were both at a party held by a mutual friend over the holidays and had the chance to meet in real life. :) That's a chocolate fountain in back of my head in the picture. We've had a number of misses over the last year where we've been in the same city a day apart, and even once in the same hotel on the same night. It was so nice to meet one of my online friends in person!

For Sale: The House I Grew Up In

2012-01-01T15:07:00.002-05:00

Happy New Year!

We spent some time over the holidays up north in Sudbury, Ontario, which is where both my husband and I grew up. As part of our travel, we drove by both of our old houses to show our daughter who is almost 10.

The house I grew up in is for SALE!! So, I had to look it up on MLS when I got home.

It's out of my price range, but here is a link to the listing...it will only work until a couple weeks after the house sells.

http://www.realtor.ca/PropertyDetails.aspx?&PropertyId=11412093&PidKey=-920454046

It's a 4 bedroom, 3 bathroom, 2395 square foot home, currently priced at $388 100. I have fond memories of this house! There was a jacuzzi room in the basement, as well as a room where we played pool. It was great as a teen to have friends over. There was no outdoor pool when I lived there, but the pictures show there is one there now.

In the kitchen, there was an open brick oven for cooking, as well as your regular oven. I'd make so much use out of that now, but at the time, my parents put a small tv inside the oven cavity so that they could watch tv while in the kitchen. I can't tell for sure from the pictures but it looks like it might still be there in the brickwork next to the fridge. Can you imagine being able to cook pizza and pasta dishes in an open brick oven? Yum! I've never seen anything else like it in any other kitchen I've been in.

I also loved the address. The address is 486 Galaxy Court. Who wouldn't want to live on Galaxy Court?? What a great name for a street. The neighbourhood is called Moonglo, and most streets have names to match. Moonglo, Telstar, Galaxy, Neptune...you get the picture. And the street number 486 was cool because at the time, if you wanted to buy a new computer, you wanted to make sure you had the latest and greatest 486 computer system! (Remember those??!)

Ah...memories of the house. I hope whoever buys it from the current owners love it as much as I do. :)

Favorite Christmas Carol - The Huron Carol

2011-12-26T14:43:00.000-05:00

It's boxing day! Christmas is "officially" over, but I wanted to share one of my favorite Christmas carols.

I learned this song when I was 6 or 7 years old, and in Brownies, part of the Girl Guide Association.

The song is entitled "The Huron Carol", and it is considered a traditional Native Canadian Christmas song, although most people have never heard this treasure of a song. It's hauntingly beautiful. Written in the mid-1600's by St. Jean de Brebeuf who lived at Ste- Marie among the Hurons in Ontario, Canada. Originally written in the native Huron language.

Here are two different versions of it I found on YouTube for your pleasure. :)

This second one is also lovely, with verses sung in Huron, French and English.

my technological dictation post

2011-12-23T10:44:00.000-05:00

this is being dictated verbally by me into my phone the phone will translate all of my words into typing I'm interested to see how well it will take my words and put them into writing 1 way or another this is pretty darn cool don't you think no I'm not using series because I don't have an iphone I am using the feature that is on android already built in test now over will see how it works

Back to normal typing now on my laptop. That was pretty good! It got every word except for "Siri" which isn't in the dictionary since it's the name of an iphone application. It wrote "series" instead. No punctuation, but it did get every word. I have used this feature on my phone for text messaging as well as for making grocery lists and other lists (things to do, books to read, etc.) but I hadn't tried blogging with it yet. The dictation feature is pretty handy all in all, and for those who are not quick typists, it is probably quicker than typing.

8 Years / 6 Weeks: 2 Anniversary Dates of Neonatal Death

2011-12-20T12:37:00.000-05:00

Today is Tuesday December 20th, 2011.

It's a strange date for me. It's the 8 year anniversary of our son Colin's death who died at 3 days old. It is also the 6 week anniversary of our son Kyle's death who died at 15 days old.

Six weeks is one of those important timeline dates, not sure why, but it seems more important than 4 weeks.

So what have I done so far today? Not much. I spent the morning in pj's, and then started watching Drop Dead Diva via Netflix. Being home on "maternity" leave by myself gives me the luxury (or sometimes need) to do nothing.

At least it's a beautiful sunshiny day, although to have NO snow, and green grass on Dec 20th is so strange!

I just wanted to recognize the day here. Done.

50 Book Pledge/Challenge 2011 Books 21-26

2011-12-19T20:56:00.000-05:00

So, since it's nearly the end of December, I'm definitely not getting to 50 books read this year. Perhaps I'll try the challenge again in 2012! Since my last post, I have read the following:

21) The Son of Neptune by Rick Riordan. Although these are classifieds as kids/teen books, I love all of them, and have recommended them to many people, kids and adults both! My 9 year old gets to read them first, and then they get passed on to myself and my husband. All of enjoy Rick Riordan's books. :) I can't wait until the next one in this series...but I have to wait another year. Fall of 2012.

22) The Queen's Fool by Philippa Gregory. I've been meaning to read books by this author for a while, and havn't got around to it until now. I watched the movie The Other Boleyn Girl, and loved it. This book was very good, and took me about a week of casual reading to get through...which is a long book in my world. I really enjoyed it, and I have now started on another of her books in the Tudor world.

23) Betty Crocker Basics and
24) Betty Crocker How to Cook and Entertain With Confidence. These were two books compiled into one. I love my Betty Crocker cookbooks. Everything I make from them turn out. I was disappointed to find that there were only a handful of recipes in these books that I don't have in my other books though. I did bookmark a few that I hadn't seen, but it's possible that they are in my other Betty Crocker cookbooks as well. I did learn one thing from reading through these books, and that is to whip cream, you should chill your bowl and beaters first. (I cook more than I bake, can you tell from this comment?)

25) Before I Go To Sleep by S.J. Watson This was a quick read by an author I had never read before. I think it would make a good movie, but I can't tell you what type or it would tell you too much about the book. :)

26) Sing You Home by Jodi Picoult. As I told a friend, "I havn't met a Jodi Picoult book I havn't liked." Ok, that's not completely true. There was one I didn't like. But I liked this one. It didn't seem nearly as controversial as her other books though... I like the ones that are ethically controversial medically or legally. This was still ok though.

If I get through any more books before the end of the month I will post them in another post. Maybe I can get to 30?

Community of Love

2011-12-14T16:07:00.000-05:00

We have been very open and public about our journey through our pregnancy with our son Kyle (Oct 24 - Nov 8, 2011). His life has not only affected us as a family, but our extended family, friends, acquaintances, doctors, hospital staff, and many people who I have never even met.

Not only did it affect these people, but his life created a lot of conversation right from the very beginning. Some people didn't understand why I didn't abort immediately after finding out he was affected. Others were incredibly hopeful for the medical treatment of a liver transplant that was available this time, that wasn't a possibility eight years ago when we went through this before. After his death, many have struggled with the "How could this happen," either from a medical or theological perspective, or both. Awareness about urea cycle disorders and awareness about organ donation have occurred. A new study on hepatocyte transplant (injection of healthy liver cells) will be taking place for children with urea cycle disorders in Toronto because of the behind the scenes research that the metabolic genetics department did because of information I had them look into while looking into treatment options for us.

We have been overwhelmed by the generosity of others. From the many people who looked into the possibility of being a donor, those who spent hours in prayer, those who helped financially, those who brought us flowers and meals and gift cards for meals both during our time at Sick Kids as well as in the weeks we've been home. For those who have visited and listened and laughed and cried with us. For the heartfelt letters, that I will go back to read. One family even provided us tickets to go see Mary Poppins the musical in Toronto as a way to reconnect as a family, which is something I would never have thought of, but was highly valued and appreciated by us. People often ask what they can do for us, and I never have an answer. Sometimes you don't even realize what it is you need. A reconnection experience to adjust into our "new normal" was one of those things.

I'm not very good at accepting things from people, but I was told by many (my husband, social worker, pastor, etc.) that if someone offers something, I need to say yes, because 1) I need to and deserve to (I still have issues with the "deserve to". I don't think I do, but I digress...) and 2) Because individually and as a community, people want and have the need or desire to help, and they can't help with allowing us to still have our son, so they help in whatever way they feel they can. So when offered, I say yes, and we have been blessed and overcome by the generosity of others.

I have noticed a few blog posts about Kyle's life in the last few weeks. I thought I would share them here.

http://www.transplantedthoughts.com/?p=2309

http://myunstilllife.blogspot.com/2011/11/with-love-in-my-heart.html

http://www.theanthonycrew.com/2011/11/power-of-prayer.html

http://jamsideup.ca/blog/?p=1397

I was also interviewed during my pregnancy by Camilla Cornell, who wrote an article entitled "Gene Genie" in the 2011/2012 Winter Edition of the Pregnancy Special of Today's Parent Magazine. I can't find an online link at this point, but I'll put it in if I find one. Look for this magazine at your doctors office. They are distributed free of charge.

It is now 7 weeks since I gave birth to Kyle, and 5 since he died. I went back to work after our son Colin 6 weeks after giving birth and his death (he lived for 3 days) and it was much too soon on an emotional level. I will return to work this time at the beginning of February, 15 weeks after giving birth, 13 weeks after his death. It's amazing how much time is needed to process death. I'm not sure that it ever fully gets processed.

The Last Few Days Nov 6-8 and Beyond

2011-12-14T00:57:00.000-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of the last few days.

If you havn't read my recap of Week One, or the recap of Week Two, read them first.

We spent the day at Sick Kids on Sunday, including our daughter. The nurse that day was the same nurse who was there the very first day Kyle was born and brought over from Mount Sinai. She arranged to have Natasha be able to be let in to see Kyle since she wasn't officially allowed to on the PICU floor since she was under 12. I'm very thankful she did this.

This was the last day that he was responsive at all...he would still grip your finger if you put it into his hand.

They did neurological tests on Monday and Tuesday. MRI, ECG, and a special type of ECG where they put goggles on and flash lights, do hearing testing as well as physical testing and all of them showed absolutely no response to stimuli of any form. We made the decision to let him go, and spent time with him as a family for a while before releasing him from the meds and breathing tube. He was 15 days old.

It probably sounds strange, but the fact that the tests showed complete instead of partial damage made it easier to let him go, since we didn't have to make a choice in any form, the choice was already made for us.

It is extremely frustrating to us and to the doctors that they were able to get the metabolic condition under control only to have the E. Coli infection take over to such a terrible extent.

We came home late Tuesday night (Nov 8), and made visitation/cermony arrangements today for Saturday evening. We then travelled north to Sudbury to have him buried next to his brother Colin who died from the metabolic genetic condition at 3 days old 8 years ago. It is also the same graveyard where my two brothers who also died from OTC, the same genetic disorder, were buried.

We are exhausted, and sad, but overwhelmed by the tremendous amount of support we have received from all around us. It's hard for people to hear that a baby has died...especially when this is the second time we have gone through it. I don't know why us, but despite the grief and loss and pain and exhaustion, we are feeling overall ok right now, mostly because of how much support we have had.

The doctors commented how impressed they were with our advocacy for Kyle right from the beginning during the pregnancy. Because of some of the information I had gathered and presented regarding emerging research for the condition at the beginning of this process, Sick Kids will be starting a new experimental treatment study to help babies with the same type of condition as well as other urea cycle disorders in the future. Kyle was not physically big enough for this treatment study, but I am proud that because of him it will be started at Sick Kids to help others if needed.

The study is experimental, and a little controversial, but we were willing to participate if we didn't have a liver donor or cadaver liver lined up fairly quickly due to the severity of the illness in our particular mutation of OTC. It had been arranged for us to be flown to Yale to be in the study if needed. One of our big concerns was travelling to the States. As we had said to our doctors in Toronto, "Being in Toronto is hard enough, but at least our family and friends can come visit. To go to the States means noone will be able to visit (due to finances), and we aren't familiar with the doctors down there."

In case you are interested in this study, here is a link, and if you want other information, let me know, as I do have other links I could share as well.

http://www.newswire.ca/en/story/861109/cytonet-s-liver-cell-therapy-trial-for-children-with-ucd-expands-to-canada

We were also told that Toronto General was overwhelmed with the number of applications they had for living donor for liver. I know of six who applied, and another six who we told to told off because they only test one person at a time and they were still going through the applications they had. Hopefully this has raised awareness of the need for organ donations and will help other families waiting.

There is so much more to write, but I have difficulty putting my feelings into words in general, and particularly in this situation.

Week Two at Toronto Sick Kids recap of Oct 31-Nov 6

2011-11-28T17:03:00.000-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of week 2.

If you havn't read my recap of Week One, read it first.

Mike and our daughter left on Sunday night to go home, while I stayed in Toronto. I already had a hotel room booked at the Delta Chelsea for this week, since originally I was supposed to have baby on Nov 1st by planned induction and I had booked it as a place for Mike to be able to sleep for the first couple days before I would be discharged, and then for me to join him. The hospital and the hotel are only a block apart from each other which is really helpful.

The weekend had been hard, as I described in the previous post, with dialysis lines inserted, dialysis started and stopped, and ammonia levels spiking high. They had also attached Kyle up to a fancy EEG machine over the Sunday and Monday for 48 hours to monitor for the potential of both convulsive and non-convulsive seizure activity from the high ammonia levels that had occurred on Saturday. Apparently Sick Kids is the only hospital in Canada to have this machine - it has many more electrical leads on it than a typical EEG machine.

Monday was Halloween. Mike wrote his status on G+ and Facebook that day:

First day back home for the day ... its a bit of a blur. Feels like yesterday I left with +Cindy Babcock, but its been a week. While I was there it felt like forever, like months were passing, watching him get hooked up to so much equipment and have so many people figure out how to best care for him. Its surreal now that I'm not there, trying to imagine now what I know I experienced all week.

Cindy's still at Sick Kids with Kyle trying to be strong, Natasha's here with me excited about Halloween tonight. Its two different worlds, and yet they're both happening right now.

I met with many doctors and support staff that day. If I was in the room, there was someone there waiting to talk to me. If I left to drink or eat, I came back to messages that people had come in looking for me. I spent so many hours talking to staff that day, that I had to sit and start writing stuff down. I'm usually quite good at remembering things, but it was overwhelming.

I'd also forgotten it was Halloween, and after talking with the lactation consultant who had what looked to be a police or army uniform on, I confusedly asked her if she was part of the Salvation Army? That was the only thing I could think of as to why she would have this odd uniform on! Nope, just Halloween!

A week of general antibiotics had just ended, which had been given as a precautionary measure against potential infection because he was so little, but that day they found E.Coli in a urine sample. A kidney was enlarged as well, they suspected the E.Coli infection caused the enlargement. New antibiotics to treat the E.Coli infection were started. None of us realized at the time how bad this infection would turn out to be.

Ammonia levels were creeping back up, and the metabolics genetics team were concerned about the levels creeping back up and the potential cyclical cycle of needing dialysis. They ordered a special TPN mixture (Total Parenteral Nutrition) in from the States that contained only essential amino acids and no non-essential amino acids, because the TPN mixture he was on was not being tolerated by his system well since it had too much protein in it with the non-essential amino acids in the mixture. The special TPN mixture had to be approved by Health Canada, and once approved would be MADE in the States the next day.

Feeding had not been going great the previous week, which they put down as being because he was still slightly preemie with digestive tract not completely/fully developed yet. They were feeding Kyle a "whopping" 2ml/hour of low protein formula, but he wasn't digesting it well, because of being small. They were starting him on domperidone to help with digestion. The rest of his food was coming from the TPN mixture, along with IV drips of glucose and lipids (fats). On the Monday, Oct 31st, they brought his formula feeding down to 1ml/hr through the NG tube.

The doctors did an ultrasound of the brain and could see swelling, and ordered an MRI for the next day to see more detail.

On Tuesday, on top of the E.Coli being found in the urine, they found an infection/growth that had started in the PICC line. Ugh.

Neurology came back with results from the 48 hour EEG monitoring from the weekend, but no seizures were found on it. This was really good news in my opinion, since it meant the high ammonia hadn't caused any neurological damage. In retrospect, if only that was all we had to worry about. In reality, the E.Coli infection had already started to cause damage on it's own...and it affected a different portion of the brain causing more damage than the ammonia would have.

Ammonia levels had continued to go up over night and through the day on Tuesday. Dialysis was started again. It did bring the levels down quickly, but the machine clotted, and they had to stop the dialysis after a few hours.

The MRI didn't end up happening on Tues, there was a backup of people waiting to use it, so it was booked and done on Wednesday.

On Wednesday afternoon, they asked if Mike could come come back to the hospital so that the doctors could meet with both of us together later that evening. Never a good sign. Mike left work early, dropped Natasha off a relatives along the way, and made it down for our meeting. Thank goodness I had one of my friends with me that day visiting. I was a mess.

Once Mike arrived we met with the metabolic and PICU doctors. The doctors were highly concerned because of the infection. It had developed into full septic shock, and Kyle was already on the highest dosages of blood pressure medication they could give him. They didn't know if the infection had already hit it's peak or not. If it hadn't and if it was going to get worse, they feared there was nothing else they could do, because they couldn't give any more medication for blood pressure. Their fear was that if the infection had not reached it's peak, and the blood pressure got worse there would be nothing they could do because they couldn't increase the blood pressure medication.

They were also concerned about the swelling in the brain that they could see from the MRI. They knew based on where the swelling was (base of brain stem and basal ganglia) that it was caused by the infection and not from high ammonia. They were hopeful that the swelling would reduce, but it would have to be a wait and see situation.

We were told that treatment for the E.Coli infection/septic shock was a three week treatment of heavy duty antibiotics. I remember gasping when I heard three weeks...that is what cemented how serious everything was to me, since I've never heard of antibiotics being used for that long at once.

Kyle was taken off the transplant list on the Wednesday night because of the infection. I had assumed that this meant he would be off the list for the full three weeks while treating the infection, but I learned later that as long as the infection was shown to not be getting worse he could be put back on the list.

On Thursday, the special TPN mixture that had been specially made in the States on Tuesday arrived. It had got held up at the border on the Wednesday and it took some behind the scenes work by the metabolic doctors to get it through customs. Amazingly, this mixture did the trick, and ammonia levels kept low once this mixture started to be used. The infection seemed to have leveled off and not got any worse, and over the next few days they were able to reduce the blood pressure medication until he was taken off all blood pressure meds.

He was considered stable over this time, and blood work showed that the infection was starting to clear up based on blood cell counts. Although he wasn't getting worse, he wasn't getting any better either. He hadn't been awake or been able to open his eyes since the dialysis tubes went in on Saturday. He was responding a little bit, but not a lot, to touch, and was only moving his arms and legs on rare occasion. What we didn't realize is that normally babies start trying to take the breathing tube out after a couple days, and he hadn't tried to. The doctors were really hoping that he would start responding more, and ideally, try to take the tube out to show that he was responsive.

On Friday, transplant had him weighed. He weighed in at a whopping 9 lbs (from birth weight 12 days before of 5lbs 5oz), because he was SO swollen up with all the fluids/IV's they were giving him. Transplant includes this swollen fluid/extra weight as normal weight. Transplant co-ordinator told us that since the infection was decreasing, he could be put back on the transplant list as soon as it was approved by the transplant surgeons. Transplant surgeons decided they needed to wait until he showed signs of more responsiveness before putting him back on the list, since they were worried about potential neurological damage.


Saturday. Swollen from all the fluids.

On Saturday, we realized why they had weighed him. We havn't been told this officially, (and due to privacy reasons I'm sure we won't be told), but we're pretty sure it's because they knew a liver was coming available and wanted to see if Kyle was big enough as well as healthy enough to be put back on the list for this possibility. On Saturday, in the late afternoon they brought in a young baby, maybe only a couple months older than Kyle, who had just had a liver transplant into the bed space across from us in the PICU room Kyle was in. We're not supposed to know medical conditions of the other children in the room, but, a) the surgeon's name was listed as his doctor on the wall outside the room and it's the same doctor we had been dealing with, and b) I overheard one of the nurses telling one of the other staff that he had just had liver transplant. I'm pretty sure in retrospect that had the infection not set in, causing the permanent damage it already had, that Kyle would have been transplanted that day.

A close up picture from Saturday.

By Saturday night I was getting quite concerned. That he hadn't opened his eyes in a week, and wasn't responding enough. Seeing the other baby come in and realizing he had been transplanted, and that he was alert and moving around even right after surgery, was more than hard. That night I took a look at a blog that I had bookmarked (there's a link on the side of this blog for it) of a family in the States who had a boy earlier in the year with a severe mutation of OTC, who had since been transplanted to see where they were at in the same time period. The pictures showed the baby awake, alert, and with no breathing tube, and this was after having had a severe hyperammonemic episode in his first couple days. At this point, I knew we were in trouble, but tried to remain hopeful.

The next post will be about the final couple days and beyond.

Week One at Toronto Sick Kids. A recap of Oct 24-30th.

2011-11-18T12:11:00.001-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of the first 7 days.

As many people reading this know, I was pregnant with a baby boy affected with a severe mutation of Ornithine Transcarbamylase Deficiency, which means that he can't metabolize protein properly. Protein gets changed into ammonia, but it doesn't get past that point in affected children. The ammonia builds up, causing potential brain damage, and eventually causing the organs to shut down. We were going to do medical treatment to be followed by a liver transplant. We weren't convinced we would get to the point of transplant, because the treatment would be difficult to manage. But we were willing to try. We were doing it day by day. We were going to try, and if he made it, we would go buy everything that was needed.

I was due Nov 14, or Nov 11 based on ultrasound. I've had two previous full term pregnancies. My daughter was born at 10 days overdue. Our first son, who died at 3 days old due to this same genetic disorder, was born exactly on due date. Back then, in 2003, there was no real treatment option available to us, so we did care by parent after he was born. With this history of when I went into labour with previous pregnancies, we booked a planned induction at 38 weeks, 2 weeks before due date, so that the doctors would be ready for us and ready to treat the baby immediately. I was planning on going to live in Toronto starting one week before as a just in case... The doctors wanted me to be in the downtown core of Toronto (over two hours from where we live) as a precautionary measure in case I went into labour early.

Things don't always work out as planned.

My Facebook Status on Saturday Oct 22: "I will be moving to TO on monday. If you don't have my text # let me know and I'll send it to you. My phone also has facebook, so you can still find me here too."

I had been planning on taking the evening Greyhound bus to Toronto on Monday Oct 24th and stay at my cousins for the week, but it didn't work out that way. Instead, that morning I woke up to the very slightest bit of blood upon wiping after using the washroom. I woke up my husband and told him we should probably go into the hospital as a just in case, since I've never had any bleeding in my pregnancies, and I was pretty sure I had "dropped" about a week and a half before.

That was 7am, got in the car at 7:30am, and my water broke in the car at 8am! Contractions started about an hour later, and we arrived in Toronto around 10am. We phoned the hospital on our way after my water broke, because there were special medicines that were to be used during my labour in order to help both the baby and I due to the genetic condition. They can't be mixed more than a couple days in advance, so they had been planning on having the pharmacy mix them the day before the planned induction. I'm not going to go into it at this point since it probably deserves a whole post unto itself, but after delivery, I went into a wee little episode of medical delirium, where I lost 8 hours of memory and went a little crazy, due to extremely low potassium levels -a side effect of one of the medicines I was given. We'll talk about that another time. I'm not saying that I kicked doctors out of the room, or tore all my IV's out or anything like that of course. (Did I mention I went a little crazy? And remember none of it?)

Here is a picture of me at the hospital before they had a room ready for me.

Kyle was born at 1pm, at exactly 37 weeks going by last period date. I was really sick this pregnancy, and had a hard time gaining weight...I gained 4 lbs, and he weighed 5lbs, 5oz. I got the natural labour I wanted instead of the induction, and without the planned PICC line insertion for me that I had been worried about having. Up until a few days ago, I was still bruised from all the bloodwork that had to be taken, which is what they were trying to avoid by having a planned PICC line put in. Considering that I tore out my IV lines, it's probably a good thing I didn't have the PICC line in.

My FB status 4:45am Tuesday morning Oct 25: So much for moving to TO a week ahead of time. Was planning on arriving in TO Monday evening, but went into natural labor monday morning! Baby Kyle Alexander Babcock arrived at 1 pm weighing 5 lbs, 5oz, or 2.405kg for the metric people. :) He is across the road at sick kids stable in picu now.

Kyle and I right after delivery.

Kyle was taken to across the road to Toronto Sick Kids immediately on Monday afternoon. He was started on treatment for the metabolic condition, and was on the liver transplant list by Tuesday evening. He had a PICC line inserted on the Thursday Oct 27th due to all the blood work they were taking from him to monitor ammonia levels, etc.

The hospital treated him as a preemie, because of his size, and because the doctors said he was actually more like 36 weeks instead of 37 weeks based on a number of factors including size and digestion. They put him on antibiotics immediately as a preemptive measure since small, preemie babies don't fight infection well.

Kyle Day 1 after hooked up to medicine through IV's.

On Friday Oct 28th, ammonia levels started to rise gradually. The plan was that if levels went above 200, dialysis lines would be inserted and dialysis started. By Saturday morning they had drifted into the high 200's. High levels of ammonia can lead to brain damage, so the plan was to ensure the levels were kept relatively low. Kyle went into surgery to have the dialysis lines inserted. The surgery went well, but he lost a lot of fluid/blood during the surgery, and looked really tiny after it was done. It then takes a while to get the dialysis set up and primed, and during this time his ammonia levels spiked really high, really quickly...to 600 and then to 900. The spike in levels was unexpected. They were able to bring the levels back down with the dialysis, but in the meantime the room was crazy busy due to the spike in levels and the doctors trying to figure everything out. We had gone in, watched for a few minutes, realized it was too busy, and went and waited in the waiting room. The metabolic specialist said there were 25 staff in the room at one point between pediatrics, metabolics, dialysis, neurology, dietitians, respiratory therapists and more. They had put a breathing tube in before doing the surgery, which was to stay in for at least a few days after.

This picture is from the Saturday. PICC line in, dialysis lines in, breathing tube in, NG tube in, and IV's going in in many places. It gives an illustration of how much medicine and equipment he was on at the time.

With the breathing tube in, he got bumped up a level on the transplant list from category 3 (in hospital) to category 4 (in hospital in ICU on life support systems). The only category higher is 4F (in hospital in ICU on life support systems with fulminant sudden, full blown liver failure).

The plan had been to keep him on dialysis for a few days, and they would be able to adjust nutritional requirements during that time with the amount of protein they fed him, by combination of TPN (Total Parenteral Nutrition) and a low protein formula called Cyclinex via NG tube. Nope. Plans don't work. Although the dialysis worked in bringing the ammonia down quickly, it was hard on his body, and by Sunday morning they took him off the dialysis because it caused his blood pressure to change too much. (High/low? I can't remember!)

Over Sunday night and Monday he was considered stable again, although ammonia numbers were starting to rise again.

Our daughter went back home after the birth and my mother in law came and looked after her for the week. She came back down on the weekend, but in PICU siblings aren't officially allowed in unless they are over 12 (she's almost 10), because they can carry germs without being sick, and they don't want them transmitted in ICU, so it was hard.

Being on the PICU or NICU floor is draining. You can't have food or drinks with you in the room, so I would have to force myself out to go eat/drink. I knew I needed to in order to maintain my own energy, but also because if I got sick, I wouldn't be allowed on the floor or in the room with Kyle. It's a shared room with 3 other children (there are no semi private rooms in ICU at this hospital), and if the doctors were doing rounds, you could stay in the room while they were discussing your child, but had to leave while they were discussing other children. If they were doing a sterile procedure on someone you had to leave. And during shift change between approximately 7 and 8 both am and pm, you couldn't go in either. Add in time away for pumping breastmilk...the lactation consultant recommended pumping for 20 minutes if you were double pumping (both breasts at the same time) or 40 minutes for single pumping, every 3 hours. I pumped, in the hopes that the milk could be used after liver transplant, or to supplement the low protein formula, but nowhere near that amount. It simply wasn't realistic in the situation. You can also only have a total of two people in the room at a time, so if family came to visit, Mike or I would have to bring people in one at a time to see him.

When you were in the room, much of the time was spent talking to the doctors and other staff. Pediatrics, Metabolic Genetics, Transplant...each of which had the doctor on call, specialists, fellows, residents, etc, as well as supporting staff such as dietitians, respiratory therapists, transplant co-ordinators, social workers, lactation consultants, chaplains, plus your nurse for the shift. Every staff member we met, from housekeeping to cafeteria workers to doctors and nurses were phenomenal to deal with.

During Sunday and Monday Kyle was considered stable, but the ammonia levels did start to creep back up.

This is the end of the recap of week one. I think this post is long enough, and I will post week 2 as a separate post, hopefully by later this week.

Liver Transplant Donor Application Update

2011-10-21T21:26:00.000-04:00

I have some important news to share. All blood types can now apply to be a living liver donor towards our baby. Previously only B or O could apply, and they are now opening it up to A and AB donors. Positive/negative blood type does not matter. This is called "ABO incompatible matching", and is not typically done. Toronto has done it with adults, but never with children.

When we met with the transplant team a couple of weeks ago, they had mentioned that they were going to add in the possibility of using ABO incompatible livers from cadavers if they came in to bring up the odds of finding a liver. This is only done in rare cases. Our next question to them automatically became, "If you are willing to do that, what about incompatible blood type living donors?" They mentioned that they had not done this at Sick Kids before, but would talk it over with the living donor co-ordinators at Toronto General as well as the main surgeon (who was in surgery during our last meeting.)

I received an email today saying that it had been approved, and if we knew of anyone with the other blood types who would be interested in applying that they could. Healthy, ages 18-60, in normal weight range.

This is a link to the Liver Donation Manual. There are a few things in it that don't apply to our situation - like the fact that normally they don't look at potential donors until the person is on the transplant list. Since baby will be on the list immediately after birth, they are looking at the possibilities of screening donors now. It's a very detailed document about the procedure!

Finally, here is a link to the Donor Health History Application Form. Where it asks for the recipients name, we are using "Baby Boy Babcock" for now, and he will be at Sick Kids. If you need any more info let me know, and I'll give you the number for the living donor transplant co-ordinator at Toronto General Hospital who looks after all this, and answers questions for those considering the process.

Applications get sent to:

Toronto General Hospital
Living Donor Assessment Office
585 University Avenue
NCSB-12C 1217
Toronto, ON M5G 2N2
Fax 416-340-3097

It's Time to Pack!

2011-10-21T20:40:00.002-04:00

So...I'm moving to TO on Monday. I've been packing, which is difficult since 1) I don't know how long I'll be there, and 2) I have to pack both pregnancy, and post-pregnancy clothes.

I've learned that I don't have very many clothes in the first place (Ok, I already knew that), and that I will probably need to go pants shopping in particular in a few weeks, because the 5 or so pairs that I own are all looking really ratty and should probably be put in the garbage, or passed down to Value Village for people to cut up and use for crafts.

The post-pregnancy stuff I will put in the car, and have my husband bring down when he comes the the next Monday. The pregnancy stuff, which I should only need for one week, will be brought when I take the Greyhound down on Monday night.

I'll buy a one week Toronto Transit pass to get around everywhere I need to be.

I have appts all day Tuesday, hopefully my only day of appointments that week. A friend is coming on Tuesday evening, and we are going to be in the audience of the Marylin Denis show Wednesday morning. The guests are all no-name guests to me...the day before is Michael Buble (love his music!!) and the day after is Arlene from Dragon's Den... Why couldn't I have been there on one of those days??!! :) It should be a fun experience anyway.

Meetings with Transplant & Social Work

2011-10-12T23:50:00.000-04:00

I realized I never posted about our meetings with liver transplant and social work last week.

We were supposed to meet with two of the liver transplant surgeons, along with our co-ordinator. One of the surgeons was unable to meet, because they had a cadaver liver transplant that day, which of course, you can't plan ahead of time more than a few hours! During our meeting, our transplant co-ordinator got a page, and said "Part of my job is going to pick up the organs when they are available, and I need to leave to go get one." They knew it was going to be ready for her to pick up soon, since it was for the surgery that the surgeon was called into. Off she went, changed into her scrubs, and went across to one of the other nearby hospitals to return with a liver! Not a job responsibility I would EVER want. It made for interesting conversation when she returned. She never takes the street, always takes the tunnel system, and always brings a group of people with her. She brought 4 this time. The surgery they did that day was number 25 for the year at Sick Kids. They typically do between 20 and 25 liver transplants a year, but apparently this year has been busier than normal. I suspect that part of the reason they are busier is because urea cycle disorders like ours are being treated much more often now with liver transplant, particularly at young ages. They know it works as a cure, and with each one the surgeons perform, their experience is growing.

We also met with the liver transplant social worker, who was GREAT. She will apply to Ronald McDonald House for us starting on Oct 31, and will phone in each day over the first few days to keep us on the waiting list since we will be busy. Hopefully we get in sooner than later, because staying downtown Toronto is expensive. Worst comes to worst, I can commute it until then, but the 2.5 hour commute each way won't be fun. She is also going to apply to the David Foster Foundation for us, although nothing is guaranteed. This foundation helps families with children undergoing transplant with some of the many extra expenses that come up.

We told her that we weren't preparing in any way for the baby to come home. We are taking everything day by day. If baby comes home, we will do a major shopping spree at the time! She told us that in typical Jewish culture, there are no baby showers ahead of time, and nothing is bought until the baby is coming home from the hospital. I did not know this, but apparently we can say we're following Jewish tradition. :)

I'm off to Toronto again in the morning... I'm hoping it will be a fairly quick afternoon of just a couple appointments, and that I can make the 4:30 bus back home...otherwise I have to wait around until the 7:30pm bus. I have ultrasound and obstetrician appointments scheduled, but I seem to always end up with extra appointments while I'm there. One of the things I will be asking for is a doctors note/prescription for a breast pump. Since baby can't drink any breastmilk until after transplant, I'm going to see if I can pump. Don't know if I can, but we'll see. With a doctors note that it is medically needed, my work insurance company will pay up to $200 towards purchase, or 3 months of pump rental. I will purchase one, probably from Sick Kids hospital. Ultrasound will also give an estimate of how big the baby currently is. Two weeks ago, they estimated 4lbs 13oz at the time.

I set up a Facebook page that tells about how we are looking for a donor for the liver. If you search "Baby Boy Babcock" on Facebook you will find it, or you can find it Right Here. Feel free to join the group and share the link. I know that we've had a few people apply, but I don't know if any of them will be considered successful matches.