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.

Lily Marie Gibb

Our daughter was born on August 12, at 4:29pm, in Edmonton, at a whopping 8lbs. I am so proud of Leah for all she went through and didn't give up. We have named our girl Lily Marie.

She has a congenital heart disease which basically means she has a heart defect. She has TGA (Transposition of the Great Arteries) and a VSD (Ventricul Septum Defect). TGA is where the two main arteries which come into the heart from the lungs and from the body, enter the heart into the wrong ventricles. They are "Transposed" or switched. The VSD means she has a hole in the wall which separates the left ventricle from the right ventricle. We are still waiting for all the cardiologists to do their tests and analysis to decide which surgical path is going to be the best for Lily. Usually a baby with TGA requires surgery within a few days of birth, but because she has such a large VSD, the oxygenated and deoxygenated blood are mixing quite well and Lily is very stable. Also, due to a few other complications with her heart (a small Right Ventricle and others which would take to long to describe without drawing a picture) they will not be able to do the typical arterial switch to correct the TGA. We are waiting until Tuesday for more information from the Cardiologists and surgeons as to what they will recommend. It is looking like they will wait 4-6 months to do a surgery, which will then require another surgery in 2-4 years. The good news is, the nurses in the Neonatal ICU have told us that she is the most stable, and doing the best out of all the other babies in the NICU. They have also said that she is doing really well and is really stable considering her heart condition.

If you ask me, there is nothing wrong with her. Or at least it appears so on the outside. She is so beautiful and I love her so much. It is hard for me to describe how much I have instantly fell in love with my little girl. She loves her Daddy so much. Lily was born in the Royal Alexandria hospital and right after birth she had to be transported to the Edmonton Stollery Children's Hospital or the University Hospital. Leah had to stay behind to recover a bit. This allowed me to follow the ambulance and then spend some alone daddy daughter time. I was so tired, but I couldn't say goodbye to her. I was able to hold her for about two hours that night into the early hours of the morning. I don't have the pictures to show it, but I hope when she is older she will know that I hardly left her side and we had such a long bonding time just me and her. The nurses would tell me whenever I show up to visit her that she has been crying and that she has a good set of lungs on her, but I have hardly seen her cry. She just loves it when Daddy comes to hold her. You can see the look of satisfaction of being in her Daddy's arms in the picture below.

She loves mommy too, but because I am the one blogging, I get to write whatever I want. Right after she was born, she had to have a lot of needles, IV's, blood tests, ultrasounds etc, but as I watched her she just laid there looking around at the world. She has been so peaceful in my observations. She is so cute and it is just so hard for me to believe that there is anything wrong with her.

Ronald McDonald House

Our pregnancy is coming to an end, hopefully tomorrow. Leah is scheduled to be induced tomorrow. She is getting pretty big and is over due. We are up in Edmonton waiting for our little girl to be bornas she will need some serious heart surgeries after birth, and Edmonton is the Cardiac surgical center for western Canada. We feel really blessed to be able to stay at the Ronald McDonald house. It is a great facility. We have a private room, which is similar to a hotel room. Two double beds, four piece bathroom etc. There are 30 rooms here and the residents are divided up to share 6 kitchens. There is a variety of TV rooms, including a library, workout room, games room, laundry room, bonus room, lounge areas, and a eating area. See the pics below for some of the areas.

And of course a picture of my 9 month prego wife: