Monday, October 18, 2010
Today is Leah's and my Wedding Anniversary. We actually celebrated it last Friday because my parents offered to baby sit so Leah and I could go for dinner and a movie. Leah did make me a dinner tonight which she made to imitate the meal we would have if we went to The Keg. I figure it was a good time to update our blog, well, actually I have been meaning to for a while, but my sister sent me a request to update it as she mentioned she keeps looking at my blog for an update but keeps seeing Lily just after surgery which isn't the nicest memories. She asked for some more cute pictures of Lily, so this is for you Allaina. Since the surgery Lily has been doing really well. She has been putting on weight which is usually tough for cardiac babies post surgery. She completely breast feeds which wasn't expected, and the doctors say they won't even discuss surgery plans until she is at least four months and will be able to wait until the later of the 6 month time line for her next one. It is weird to think that she has to go through it all again as to me and those who know Lily, almost completely forget that she had to go through it. She is a happy normal baby, as you can see in this picture below.
Sunday, August 29, 2010
Friday, August 27, 2010
Tuesday, August 24, 2010
The Dr's have informed us that the tentative surgery date is scheduled for Thursday. They did give us the disclaimer that it won't be a for sure thing until she is in the O.R. room. They give that disclaimer as there is always a chance that a baby will become a higher priority. So for now, we are hoping her date doesn't get bumped so we can take Lily home sooner. For now she is stable and happy, either that or is too tired to be too fussy. For example today when we bathed her, she hardly cried and was just lookin' around and even somewhat smiling - as much as new borns smile. Here is a picture of her smiling at Daddy...at least it looks like a smile. She was really just adjusting and puckering her mouth, but regardless, it makes me laugh and smile.
Wednesday, August 18, 2010
The Dr informed us that they will do surgery next week. The day is yet to be determined, as they assess each day who is more critical than others. They do surgery 5 days a week, and sometimes on the weekend. Recovery period is approximately 2-4 weeks from date of surgery. Some of this recovery time may be able to occur in the Alberta Children’s Hospital in Calgary – we will wait to determine that later. They will then have to do another surgery at 4-6 months, and another at 2-4 years. So a total of three surgeries – assuming everything goes well. I will try and describe the surgeries, and the overall goal they are trying to achieve.
The overall plan is to re-route all the blood which would be coming from her body to the heart and re-route this deoxygenated (or blue blood) directly to her lungs instead of returning to the heart first. The blood then gets oxygenated in the lungs (referred to as red blood) and then would return to her heart via the normal path. This method of having the blood go directly to the lungs first, would essentially be letting the blood seep into the lungs vs. being pumped their by the heart. As you can imagine, blood flowing/seeping to the lungs vs being pumped into the lungs is less effective and not natural; especially for baby’s lungs. They have a tendency to resist the blood flow/seeping into the lungs, but as they get older they become less resistant (thus the bulk of the surgery needs to be done later). The goal described above is achieved normally in two surgeries, called the Glenn procedure (at 4-6 months) and then the Fontan procedure (at 2-4 years). In order to help get Lily’s lungs ready to accept the blue blood directly flowing/seeping to them, the doctors need to do a surgery sooner than later to prepare her lungs. They do this by restricting the blood flow to her lungs. Right now, she is pumping lots of blood to her lungs, but not pumping it out effectively, causing extra stress on her lungs. They need to essential rest her lungs or reduce the stress on them.
This is a picture of a TGA heart on the left (somewhat like Lily’s) and a normal heart on the right. Use them to understand which arteries do what. Aorta goes to the body, Pulmonary goes to the lungs:
Typically with TGA, they would just switch the Aorta and the Pulmonary arteries. However, Lily’s right ventricle is too small and is not capable of pumping as it would need to. Thus an alternate procedure is required.
First step (done next week) is to take the Pulmonary valve and connect it to the Aorta. This will direct all the blood flowing out of her heart to the body (and none to the lungs). You may wonder, “how does she get blood to her lungs?” They will do this by putting a synthetic shunt (or tube) from her right ventricle and connect it to the pulmonary artery, which will pump it to the lungs, but a smaller amount of blood (just enough to keep her saturation (or blood/oxygen levels) where they are currently at. This surgery is called the Norwood or Sana operation. The shunt is only temporary and will be removed when she goes in for her surgery at 2-4 years.
At 4-6 months, they will do the Glenn procedure and take the SVC (superior vena cava, which is one of the main veins from the body) and connect it directly to the pulmonary artery; which will take blood directly the lungs.
At 2-4 years, they will do the Fontan procedure and take the IVC (inferior vena cava, the othe major vein from the body) and also connect it directly to the pulmonary artery; which will also take blood directly to the lungs. They will also remove the shunt they are placing in next week.
I know this is hard to completely understand without it being described in person with a sketch, so I hope you can follow. I would be more than happy to explain it all when we are talk in person and I can sketch it out.
If you have any questions, I will try and explain it or ask the questions. This surgery has only been done since the 80’s and thus they do not have anyone older than 30 who has had this procedure. Her quality of life will be good, as long as she does not feel like she disappoints people who might expect her to be an athlete. Brain or mental development was explained to us like this: She will likely be able to keep up with the grade level for her age. They did say that studies have shown that learning difficulties, attention difficulties, and behaviour problems are quite common with heart surgery children. I am not too worried about this as it will just take some extra parenting, patience, and extra love to help her achieve. I know the Lord has blessed her with special gifts to help her succeed and be happy. She will likely be on blood thinners her whole life, starting with Aspirin, and later after her last surgery something a little stronger.
Please continue to pray for our little Lily, especially as she will be having surgery soon. It is a little frightening for Leah and I, as it is easy for us to worry about possible negative outcomes as it is a fairly complex surgery.
For Now we will just continue to enjoy the Snuggles and precious moments we get to have with her.