Family Pics and update

I just can't help posting pictures of my cute little Girl! She brings such a smile to my face. Lily recently had to go on oxygen just before christmas, but we took off the tubes so we could get a few pictures. They turned out pretty good, I didn't even have to do any photoshop on them! You can see how blue her eyes are, and how long her beautiful eye lashes are.

Lily had an MRI before Christmas as well, and the Doctor told us her case would be reviewed on January 4 to see what priority level she will be placed on for her next surgery. They did review it on the 4th, but we still don't know when her surgery will be, except that it will be within the next few weeks. They will give us a week heads up, which doesn't help me plan to give my boss very much of a heads up so I can take the time off. It always doesn't seem like reality that we have to go through this again, I don't think it will hit until we are up in Edmonton again and have to give her a kiss as she is put under.

We had a great Christmas with lots of family around, however we did miss the Agnew's family trip to Hawaii. Leah's sister Caroline got married on the 21st in the Hawaii Temple, but we were not about to leave Canada without insurance for Lily, which we are not able to get yet because she is still considered to be high risk after a surgery as far as the insurance companies are concerned. We also didn't want to risk going somewhere when it is so close to Lily needing her next surgery. We were sad to miss out on the Agnew Hawaii experience and were sad we couldn't see Caroline and her husband Justin be sealed.

We did manage to take some family pics, I don't know if this is the best one or not, but I figured I should post one, because after all, my girls are the most important thing in my life and I love them dearly.
I hope everyone had a Merry Christmas, and that 2011 will bring lots of happy memories to everyone. Happy New Year!!

Heavenly Pictures

I just had to post these two pics of Lily and her parents. I am starting to figure out photoshop, and I think these onse turned out nicely.

Happy Anniversary

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.

I usually forget that she does have to go for more surgeries. I try not to think about it and enjoy the time between now and then.

She is smiley and an absolute joy to have as part of our family. Leah and I absolutely love her to pieces. Here are a few pics Leah took of Lily, and which I added a few effects with Photoshop.

Lily's Recovery

Lily has been doing well. I have posted some pictures of Lily right after surgery which I wasn't going to, but decided I would so everyone could see how many cords were originally on her. Today she had a bunch of them taken out. Her sternum was sewn up in less than 24hrs because she was doing so well (usually they wait 2-3 days). I was hoping she would be able to have the breathing tube taken out, and they kept on telling us they would take it out, but now they are going to wait until Monday morning. She has to be awake for them to take it out. The nurses and doctors have called her a Superstar because she is progressing really nicely. She is getting fed 2mL/hr. I am hoping she will released from the PICU back into either the NICU, or to the other areas soon. It seems like mainly all they need to do is take her breathing tube out and then she will be good to progress in a lot of ways. She needs to be awake to take out the breathing tube, and when she was awake and alert the doctors were not around, and by the time they came to check on her, Leah had already sung her to sleep again. Anyway, here are the right after surgery pics, and the pics from tonight when we actually say her awake for the first time. You can just see that she is doing so much better:

So this is when we first saw her after her surgery:

All the grey tubes were on her just for a quick ECG test:

Just after she got her sternum sewn up:

The following were taken Sunday night, when we saw her awake again for the first time. Well we saw her awake before, but she was drugged up so it wasn't like she was really awake. This time she was more like her lively self:

Surgery Results

Just a quick update to let everyone know the results of Lily's surgery. She was taken to the O.R. at 7:00am. We waited patiently in the waiting room for 5 hours, when the surgeon came out and asked to speak with us. He was happy to tell us that everything went according to plan and that there were no surprises. He thought it went very well and her heart accepted the changes which were made to it. Her body has reacted nicely to the surgery. At that point she had already been pumping her heart on her own for 45min. The surgeon did say, to not relax quite yet because the next 24hrs are still critical in her recovery, so we are still praying, but we are more relaxed knowing the operation went well. We didn't get to see her for about another hour until they wheeled her by on her bed. She was very pale. It was still about an hour before we got to go into the Pediatric ICU where she is recovering. The doctors in the PICU said she is as good as it gets after having this type of complicated surgery. They affirmed that she is very stable - considering what she went through. I won't post any pictures because, one I don't have the time right now, and two, some people might not want to see her with so many tubes, wires, and other monitors hooked up to her. They also leave her chest open for 2 to 3 days until the swelling goes down. The skin is sewed back together, but her sternum is yet to be connected. She looks pretty good considering all she has been through. Lily is such a strong little girl and I know she is going to make it through.

Thursday is Tentative Surgery Day

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.

Here is a picture of what she was doing while we were giving her a bath today, below:

Daddy is already teaching her funny tricks:

Of course she loves her beautiful mother as well, Leah is doing well and is becoming a natural mother:

Heart Surgery Plan for Lily

We talked to the cardiologist today and I guess they did come up with a game plan when they met with the medical team. I guess they teleconference with many cardiologists from all over Canada and get input from this whole committee. Together as a team they have decided on which route will be the best for Lily.

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:

TGA

Normal Heart

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.