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.

Difference Between Doctors

Anniek had been having a few spells where her lips looked bluer then usual so her cardiologist appointment was bumped up a month and a half so they could see if something was wrong because of the "blue spells".
The cardiologist appointment just made me realize how much I miss the old doctors :-(
Anniek did really well for the echo, and she is up to 30lbs now!!!
Anniek's LPA is still narrow, and her pressures are worse now then they were last time, but the LPA is not bad enough that they want to do a lung scan again. They also do not know why she is having blue spells. But if she has one that lasts 20 minutes or more I am to bring her in to the hospital. The new doctor wants to see her again in 9 months....she had originally said a year, but I said I didn't feel comfortable with that and asked for 6 months (the old doctors would have done that without a problem) so the new doctor said 9 months.
I also asked if we could set the lung scan for before her next appointment, which the old doctors would have done, but the new doctor wants to wait till she sees Anniek again. We KNOW it is going to have to be done and I much rather have it set up for before the next appointment so that the doctor will have the results for the appointment! I wish the new doctor was more like the old doctors on stuff like this.

Cold and Flu Season

Cold and flu season is defiantly NOT my favorite time of year. I love how the trees look when the leaves change, but I do not like the germs that go around! This cold and flu season has not started out very well for us. Anniek was sick with a fever at the beginning of October and ended up on antibiotics for an ear infection...she was fine a couple days after the antibiotics started, and for the rest of the 10 days that she was on them. The day after I gave her the last dose of antibiotics she ends up with ANOTHER fever...GREAT! So off we go to the after hours doctors (seeing as it is Monday night) and he barely looks at her and says that she is fine. She still had a fever on Friday so the family doctor saw her and she was on antibiotics again...the second time in October! Saturday her fever finally broke and she has been fine since then...other then the fever she got from a reaction to the H1N1 shot. We were both able to get it because of Anniek having a compromised immune system...we had to wait 3 HOURS in line to get the shot!!! Of course about 20 minutes after getting in line Anniek announces that she "HAS TO GO PEE" so I had to call someone to come stand in line so that I could take her to go to the bathroom...or take her to the bathroom while I stood in line. We both had sore arms the morning after we got the shot...and Anniek had a low grade fever from the shot, but I am glad that we both got it and don't have to worry about it. I am hoping that the rest of the cold and flu season won't be as bad as the start of the season has been!

The Littlest Heroes Project

I got pictures taken through The Littlest Heroes Project by a wonderful photographer, Angie Chauvin who did a GREAT job! Here are a couple pictures that were taken: