Yesterday.

It was a better day than I thought it was going to be. I paced around nervously all morning and pretty much had nothing to eat or drink until after our appointments simply because I was so nervous I basically had zero appetite. I was sick to my stomach and I just wanted to get the show on the road. Finally that time rolled around and I set off to meet Jonathan at Riley. We had a good laugh or two while waiting and I think with each passing second my heart beat a little harder and a little faster. Then we saw him walk by in that clean white coat and scrubs with a stethoscope around his neck, a coffee cup and a million papers in hand. Jonathan just kind of starred at me for a minute and asked me if that was him as I shook my head and said "I'm pretty sure." He looked so serious and determined. Then a second later he walked back out without those million papers in hand and only a coffee cup. Then he smiled as he walked by and I said without hesitation, "that's him." 

Finally they called our name and we walked back to that exam room. Dr. Turrentine was in the room next to us with another patient talking diligently. His nurse walked us into the room and explained that they he should literally be with us in a few minutes as she closed the door behind her. Then Jonathan and I waited some more. We shared some more laughs and cracked a few jokes about one another until that moment came. That knock on the door and the swift entrance by the man who would be operating on our baby boy. Dr. Turrentine introduced himself and I asked him how his medical mission trip went. In that instant you saw his eyes totally light up and he said is was awesome. He talked to us more about it, but more on that later.

He talked to us about how often truncus occurs. He said that it is one of the more rare, uncommon defects out there. He went on to tell us Riley sees approximately 3-4 cases of it per year and that they are actually one of the more high volume hospitals in the nation for it. That was a little surprising. I knew it was rare and I knew it wasn't overly common, but that figure surprised me a bit. He said while the defect itself is rare, the techniques they use to correct it are not. He told us that many of the same things they would do to repair this defect are techniques and operations they use in many other defects as well, such as the VSD repair. 

Then Dr. Turrentine went into what the surgery basically entails. He told us that most cases of truncus are more like a 1.5 rather than simply being a type I or type II. He said most of the cases he has seen are not quite a "true" type I, but also are not quite a "true" type II either. They are generally somewhere in the middle.  In  any event, he described with great detail how the operation would be performed, where things would be cut, nipped, reconstructed, attached, and patched. He told us about the repair of the VSD and what that would entail as well. One thing that did surprise me was the idea of the conduit. I thought it was going to be an artificial graft so to speak, but it turns out it will be a cow vein with the valve already in it. He mentioned leaving the breastbone open immediately following surgery as well. They will close up the skin on the outside, but the breastbone will be left open. He said they typically do this in truncus repairs because introducing a foreign article (i.e. the conduit and valve) increases swelling a bit. The conduit he said also adds a bit of extra volume in the beginning as well, so the breastbone is left open in order to accommodate for this swelling and minimize any compression. The breastbone will then be closed up somewhere after the 96 hour marker after surgery when the heart function has returned to somewhat normal and after he is off the ventilator, feeding, etc. He also explained to us that actual operating time not taking into account time for anesthesia, monitor placement, stopping the heart and placing him on the bypass machine and restarting the heart/removing him from the bypass, would be approximately 3-5 hours. That only reiterated the fact that it will be the longest, hardest day of mine and Jonathan's lives.

This 96 hour marker represents something more significant as well. Jonathan asked Dr. Turrentine what the time table looked like when Lukas would be "out of the woods" per say. Dr. Turrentine explained with the majority of medical procedures those first 24 hours are the most crucial. In this operation that time table is different not only because of the complexity of the operation itself, but also because of his age. Dr. Turrentine said in this instance that 96 hour window represents the crucial time. This encompasses that period of time when Lukas will be taken off the ventilator, when various machines, pumps, and tubes are removed, and when heart function should begin returning to normal. He said once this 96 hour window comes and goes with little or no issues, they feel the patient is "out of the woods." I then asked him how the typical recovery goes for this kind of operation and he said typically it goes very well. This is one of the only benefits of Lukas being the age he will be at the time of his operation. He said that babies traditionally do very well with this operation because they are fairly sedentary at this stage of their lives anyways. They are not getting up and down constantly or struggling to do things. For the most part they remain very calm and stable, which is conducive to a good recovery. So good news there.

Dr. Turrentine spoke with us about the potential complications of a surgery this intensive. He said one of the biggest risk factors and complications is that common truncal valve, which will eventually become Lukas' aortic valve. He explained to us again that most children with truncus do not have the typical three leaflets that are found in the healthy heart. In fact, he said most generally have four to five leaflets and can have up to six. The more leaflets, the more opportunity to narrowing and leakage. That narrowing and leakage becomes a big problem if it is too severe. He said the more deformities in the valve (i.e. the more leaflets it has or how well it is formed) the more chances for these kinds of complications. If the leakage and narrowing is too significant they often have no choice but to replace that valve all together too, although they really, really like to avoid messing with it at all. He said that he did remember Dr. Farrall (the cardiologist) talking to him about the fact she was almost certain Lukas had three leaflets in this valve, which he said struck him as interesting because of how uncommon it was for a truncus baby to only have three leaflets. So he told us hopefully this proved to be true because that would be a big step in the right direction and that the only big concerns were watching for narrowing and leakage.

Dr. Turrentine then talked to us about his mission trip to Amman, Jordan where he operated on little ones who would have no other way of receiving the surgical attention their precious hearts needed. And he said something that has really stuck with me today. He told us he loves these mission trips so much because to him it is the purest form of medicine. He said its not about how much money you are going to make doing it or how much recognition you receive. Its just the sheer idea of helping someone and addressing a need because its the right thing to do. Its only about helping another human being and giving them what they need to continue living their lives to the fullest. I have always had that idea of medicine and admired those who shared that idea as well. For me medicine is beautiful simply because of its giving, healing potentials. The idea of traveling half a way away to help a child grow and live out their lives is pretty awesome. When he told me what his idea of medicine was about, which is purely helping people, I knew we had made the right decision in a surgeon. You can tell Dr. Turrentine is there doing these wonderful things he does because he wants to help others. He wants to help people heal and he wants to see the fruits of his labor in a smiling, happy, healthy child down the road. You can tell its not about the recognition and its definitely not about the pay. For me, that was awesome and it made me feel so wonderful to know a man like this, with those ideals, would be operating on our boy and providing him with that opportunity to continue living happy and healthy. All and all that appointment went great. He answered all of our questions very thoroughly and definitely equipped us with as much knowledge to know what to expect as he could. He was extremely nice and we are so happy with our decision. He even made us laugh by saying Dr. Farral (who went with him on the mission trip) had more energy than a toddler and that she was wild, haha.

After our appointment with Dr. Turrentine we had another echo. We literally walked across the hall and Dr. Farral performed the echo. The beds were awesome because they were actually relatively comfortable, full beds rather than those uncomfortable ultrasound tables you lay on. Dr. Farral reiterated this would likely be the last time they would scan me since I would be 38 weeks the next time a scan was needed and I would be delivering around that time anyway. So she took her time and measured pretty much everything inside and outside the heart you could possibly imagine. It was crazy. It was pretty much the same old news, although she did tell me there appeared to be some narrowing in the truncal valve. She said unfortunately she could not tell via ultrasound whether that narrowing was occurring in the valve itself or within the artery at this time. She also said there did appear to be some leakage at the valve, but this is something only time would tell for sure. So for now, we wait until delivery when they can get some more detailed views of his heart.

I left feeling far better than I thought I would. Granted, echos are always a little difficult for me. This time was no different, especially considering we got an amazingly clear view of that common truncal valve. We really got to see what it looked like up close and personal and that truth just sticks with me long after the machine is turned off. Those ultrasounds don't lie and I know we have some rough times ahead. Each echo is just a confirmation of that, so it sometimes takes me awhile to rebound from it. Hearing about the operation itself was tough of course, but encouraging at the same time. Its tough to hear because its my son; my baby. But it was also encouraging finally meeting Dr. Turrentine and knowing what capable, awesome hands Lukas is going to be in when that time comes. The roughest part of this journey is still ahead of us, but I just have to take it in stride. Live each day as it comes and try not to overwhelm myself (easier said than done). I just feel like I am walking into the abyss a little. I have no idea what to expect or how things will work once he takes his first breath in this world, but we will deal with it all as it comes and we will get through it. Together.

I know that was terribly long. Unfortunately I didn't get any new photos of Lukas to share with you, but I should have some tomorrow after my growth scan (hopefully). I also need to get the Easter pictures of the boys up, so I will work on those this evening! Up tomorrow is another NST (at 8am no less), a growth scan, and an appointment with good ole' Dr. Schubert. Let's hope I can get him to set a date (fingers cross for the 30th since that is my Daddy's birthday).  

Keep praying friends. I know its helping and it definitely helps this mama for sure =) 

P.S. - anyone watching the royal wedding tomorrow? My mother-in-law is having a wedding party with wedding cake and everything. Yay for an excuse to eat cake, right? =)