Got A Date For Toronto!!!

I was hoping that the date for Anniek's Cath would be sometime during the week of February 21, 2011 as I have that week off for school...its spring break that week!!! I got a letter from Sick Kids today with the date and it is not until APRIL. I am so disappointed that it is not until but there is not really anything that I can do about it. It just is going to be hard because it is the same week as my exams...I will talk to the person incharge of my program at the school when I get back to work something out for any exams that are scheduled for when Anniek is supposed to have her procedure. The nice part about it not being until April is that I do not have to worry about going to/from Toronto during a snow storm like I had to do in Fabruary of 2008...twice.

We Will Be Going To Toronto Again...Sometime

I forgot to update this when I got the results of Anniek's lung scan back at the end of September. I was just so upset with the results I didn't think that I should vent about the results on here...then it slipped my mind about blogging them as I have been very busy with school. For those that didn't know I went back to College. Anyway, I was not suprised that the results of the lung scan showed that the blood flow to Anniek's one lung is less then 30% but I was supirised that the blood flow is only 14%. I was a little upset about this...upset that I didn't listen to my gut. Last DECEMBER I asked the new cardiologist to do the lung scan and she said that she wanted to wait and that it would be fine. I should have follewed my gut and pushed for it to be done in the new year...in January of 2010. Instead I decided maybe I should put trust in the new cardiologist as I know she is not like the old one and there will be some change when there is a new cardiologist. The old one would listen to me and do what I felt comfortable with but all cardiologists are not like that. So I put my trust in her...apperently it was the wrong thing to do. When I talked to the cardiologist she said that she would bring Anniek up for discussion to have her sent to Toronto...which I knew as soon as I heard what the percent was.
Well apperently when the new cardiologist said she was going to bring Anniek up for discussion with Toronto...it ment in TWO MONTHS!!! I got the call today saying that they had just brought Anniek up for discussion this week and that she was placed on a 3-6 month priority. We would be almost at the 3 months if she had brought Anniek up for discussion two months ago when she said she was. I was not pleased at all when I got the message on my phone. It leaves me wondering how much I can trust this new cardiologist.

Lung Scan is...DONE

and now we have to wait for the results. Anniek flipped out as soon as we got in the room for the Lung Scan because she knew what was coming as we talked about what was going to happen and she knew that they needed to give her a needle with dye in it. Well it took 6 people to hold her down for the needle to get the needle into her. After that I got her calmed down and laying down on the table then they moved the "camera" close to her (it has to be about an inch away from her for the scan) when the camera got close to her she rolled over towards me. I talked to her and told her that she needed to stay still so that the pictures of her lungs could be taken. She laid back down but when they moved the "camera" close to Anniek again she moved and started crying. So one of the staff went out and got a special back board that had a 3 strips of material attached to it so that they could wrap her onto it so that she couldn't move every time they brought the "camera" close to her. Anniek stopped crying as soon as we left that part of the hospital. I am glad that this test is done with. Now its just the wait for the results.

Cardiologist Appointment

Anniek had a cardiologist appointment today. She gained almost no weight since she had her last appointment...but that is just Anniek...but she did grow taller. She was really good for her appointment. She did not cry at all during the echo...it might of helped that she was watching Dora and had a sucker. She just did not like having to have her shirt taken off at the beginning for her ECG...I kept her shirt off until after her echo so she wouldn't flip out about having it taken off again. I am still not too fond of the doctor she has in London...but at least this time she is going to schedule the lung scan that I really want done. It has been 2 YEARS since Anniek has had a lung scan so the results will be interesting. If they are not in balance at all I am going to be not very happy at all as I wanted this test to be scheduled in December 2009 and this doctor kept pushing it back from when I wanted it!!! Ever since Dr. P and Dr. B left I have not been very pleased with the London cardio clinic and them not doing tests when the parent feels that it is best to have it done. Hopefully it will not take too long to get an appointment to get a sedated lung scan. I think that the doctor was ready to change her mind when I told her that it needs to be a sedated lung scan...but I am very happy that it is going to be done because I feel that it is long over due. I do not know what Anniek's pressures are as the cardiologist didn't tell me what they are...the only reason I found out what they were last time was because the student told me...I would have liked to know what they were today though.

Two Prayer Request

We need to send prayers to Lilia who is on her way via helicopter to Sick Kids - she went in to have her G-tube opening enlarged in London and everything went down hill from there...starting with her lung collapsing. She is now unable to get off then vent and they think that the stent (that was supposed to be making it so that her lung doesn't collapse) she has in her lung has moved which could be a VERY bad thing if this has happened as it could mean that she will need to have a life threatening surgery. The CT scan showed that it is VERY BAD.

Asher also needs our prayers. He has been admitted to hospital with what looks like sepsis. Sepsis is a blood infection which would NOT be good! Any infection isn't good...but a blood infection is BAD NEWS. The current theories are that it's either spontaneous sepsis (no other infections anywhere, just his blood, which doesn't usually happen, as sepsis is an infection that the blood picks up from somewhere else), or that there has been an infection and/or abscess lurking undetected in the pacer pocket since April.

G-Tube Clinic

Anniek had G-Tube clinic this morning...the OT (Occupational Therapist) and ST (Speech Therapist) came with us to the G-Tube clinic. At clinic the dietitian weighed Anniek and she has not gained any weight since the last clinic...in NOVEMBER!!! She also check her height and she has grown a good amount there.
I was able to get the formula change that I wanted...so now I just have to wait for it to come in at the pharmacy. Hopefully we can start getting her to drink her new formula so we can start working towards getting her off the feeding tube as the new formula is one that tastes good apparently and the old formula tastes AWFUL so I can understand why she wouldn't want to drink it. They said to change it over gradually one feed at a time...so when it comes in I will start changing over 1 feed. Hopefully it all goes smoothly!

It is Congenital Heart Defect Awareness Week 2010

Before Anniek was diagnosed with a Congenital Heart Defect (CHD) I had never heard of a CHD. You never imagine when you are told that you have a healthy baby that it will all change 6-8 hours later and it goes from having a healthy baby to a baby that has a CHD and needs to have open heart surgery. It is terrifying. After the doctor leaves you go over your pregnancy thinking about what you might have done wrong, what you could have done differently...as well as all the why me questions.

Facts about Congenital Heart Defects

- CHDs are the #1 birth defect in the WORLD!
- And the #1 cause of death from a birth defect.
- Many children will not live to see their first birthday.
- Nearly twice as many children die from CHDs each year as from all forms of childhood cancers combined (Yet Cancer research raises twice the funds)
- Babies that have complex cases (consisting of more then one defect) often require surgery in their first months of life


Canadian Statistics

- 1 in 70 Canadian newborns are affected by a CHD
- Ontario has the highest rate of births with CHDs in Canada
- Windsor has the highest rate (per capita) of births with CHDs with Essax County following close behind

4 Years Old Today!!!

Four years ago I had Anniek by c-section and I was told that I had a healthy baby girl when she was delivered. That all changed about 7 hours later when she had her first blue spell and the nurse came in when I buzzed the nurse and took one look at Anniek and said that she looked a "little off color" and brought her into the NICU...It seems like yesterday that happened. I was so scared when I found out that they had brought her to the NICU and that they were not sure what was wrong with her at that point...all they knew is that it was either that she had a seizure or a heart problem.
I found out about an hour later it was a heart problem and she was going to be sent to Sick Kids as soon as possible.
Today we celebrated her 4th birthday. My parents, my sister, Anniek and I all went skating.



Then they came back to my place for dinner and cake and Anniek opened her gifts.



The cat thought that some of the wrapping paper was for her too.