Good Things.

Yesterday marked a big day for us. We had our first appointment at Indiana University Medical Center and we got to meet a great deal of the individual's who will be involved with my delivery and the care of Lukas both before and after birth. My appointment started with the typical things - weight (yuck), blood pressure, and all those fun things. The nurse also gave me Glucola in order to complete my glucose tolerance test at this appointment as well. And can I please say on the record that it was maybe the most disgusting drink ever? With the boys it just tasted like super sugary, flat Fanta. This was entirely different - and gross. But, back to my appointment.

I chugged it down as fast as I could and then got prepped for an extensive ultrasound. The tech, named Lori, was extremely nice. She introduced herself as well as a fourth year medical student who was trailing behind her to view the ultrasound as well. She explained that they would be looking at all kinds of things and taking measurement after measurement of pretty much everything they saw. She pointed out all of his little bones, his radius and ulna, tibula and fibula, femur, etc. She measured all these, measured his bladder as well as the blood flow around it, his kidneys, his stomach, around his abdomen, around his head, every ventricle in his brain, his spine, etc. She looked at cross sections of his umbilical cord and spine (which was super cool to see), and then she got pictures of his little feet, his face, and his hair. She said he has lots of hair already. It amazed me they could tell that already, but sure enough he does! Lukas is measuring small, which we had expected. I was 26w4d yesterday and most of his measurements averaged between 25w1d and 25w3d. So about a week behind.

Lukas' hair (taken on my phone)

Lukas' little nose and lips (taken on my phone again - so sorry it is a bit blurry!)

his little face and hands below his chin

funniest picture ever - him "laughing" as I like to say =)

When my ultrasound wrapped up, the tech mentioned that Dr. Myers (one of the other cardiologists) would be performing my echo today, but they needed me to move into another room so the echo could be recorded. So switch rooms we did and Dr. Myers came in and introduced herself. She told us about her own three boys when she learned we were also expecting our third and said someone at her church had made the comparison of having three boys to having puppies - they are just all over the place. Very true and those of you with boys will confirm that opinion I am sure. Before she started our echo, she asked if we had any questions that had come up in the weeks since my first and second echo. Since Jonathan was not able to attend my last echo, he piped up about the idea of limitations. She actually gave us some really optimistic news on that front. Dr. Myers stated that pretty much every cardiologist has a different opinion in terms of physical activity and sports that children with heart conditions and specifically those who have had major heart operations should engage in. She explained to us that the big determinant was actually not how the structure of heart is weakened after an operation. She said the breast bone is closed up and heals just the same as a broken leg or a broken arm. She said the real problem is the protective sack found around the heart. When open heart surgery is performed, essentially this sack is destroyed. So that protective barrier is no longer there. She said sports where the object is to hit someone and take them down, as in football or rugby, are probably not the best ideas for this reason. She then stated other sports, like soccer, basketball, baseball, etc. were usually fine. When he gets to the age where these things will start coming up, the cardiology team will perform numerous stress tests just to see what level of physical activity his body and heart can handle.

We then talked about the need for medications and such after his operation. You see, Jonathan was under the impression that Lukas would always have to be on medications to help him from "rejecting" this valve and conduit. Dr. Myers said that Lukas will probably be on Lasix for a little while after his operation, but this does not mean he will be on it forever. They just want to ensure after his operation any additional fluid does not accumulate in his heart or chest, as this could be quite dangerous. She explained to Jonathan that the valve is different than something like an organ transplant where yes, you have to be on immunosuppressants to keep your body from rejecting that organ. While the valve they place will be tissue, it has no living capabilities in that blood flowing through it is the only thing that makes it function. It's not living tissue, which means the body does not reject it. Good news on this front too. 

This conversation of course led directly into the discussion about the conduit, artificial valve, and the common truncal valve. We knew all along that Lukas would need a second open heart operation in order to replace the valve to an adult size to accommodate the needs of his growing heart. Dr. Myers stated that of course these valves deteriorate with time because they are not the bodies own valves and eventually they break down, as is expected. She said more often than not conduit replacements are needed at some point because of stenosis, leakage, etc. They unfortunately cannot predict when that may happen, but she simply stated they often like to get children into at least school age before they do this. With regards to the common truncal valve, she said this was one reason for several echos during pregnancy once a condition like this is found. You see, that common truncal valve will eventually become his aortic valve, so its very important. She said with truncus, there can often be "issues" with this valve because of the abnormal formation of the heart. She explained in a healthy heart, this valve has three leaflets. With heart conditions, there can be up to five and sometimes there is narrowing and leakage in this valve, which causes it to work less efficiently. She noted in Lukas' common valve that there was some moderate narrowing and leakage, which she said was not uncommon. I asked whether they would revise this valve and Dr. Myers stated that they typically do not mess with these valves in babies because it is just too dangerous and too important of a valve. She said sometime in the future, yes, they may reconstruct it a bit, but definitely not during that first initial operation. Dr. Myers said she saw everything that Dr. Darragh had seen and that she was very confident in our diagnosis. She stated I would have repeat echos every 4 weeks to check on that valve as well as his heart. She is also going to set up a consult between us and Dr. Turrentine, who is the surgeon we requested for his operations. This way we can meet him before that time comes and we can hear straight from him what this repair will be like, what to expect, etc. 

that magical little heart and heartbeat (swoon)

When our echo wrapped up, Dr. Schubert and his nurse entered the room. He was exceptionally tall (or at least appeared that way to me), and was very kind. He answered all of our questions about who would be in the delivery room, the course of events, etc. We also did talk a little about my delivery and he stated that he would like to get me to at least 39 weeks, as the bigger Lukas is, the better. I asked him whether Lukas' size was okay and he stated that he is on the small side of normal, which is to be expected with his heart condition. I will go to IU every 2 weeks from here on out, with growth scans and fetal echos every 4 weeks. Also, beginning at 32 weeks, I will have non-stress tests every visit to watch for signs of preterm labor and all that jazz. I was given a huge folder of information and pretty much any and every number I could feasibly ever need to get ahold of the key players in this game at any time of the day. Our appointment wrapped up and then we were taken on a tour of the labor and delivery unit. She showed us the "island" where Lukas will be taken immediately after birth to be assessed by the neonatology team. I was a little sad to learn I would probably only get a glimpse of him immediately after birth, as they will want to take him into this island to stabilize him and assess his heart and breathing needs before he is brought back to me. Dr. Schubert's nurse explained they liked to do things in steps. During my next couple of appointments, I would be given tours of the NICU at Riley, the cardiac ICU, and the pediatric ICU. All of these areas will be necessary for Lukas after birth and after his operation(s).

Oh and by the way - Lukas looks absolutely perfect in every other way. Dr. Schubert said everything, with the exception of his heart, looks perfect. Phew. Yesterday was the first time I have left an appointment like this upbeat and inspired instead of crying my eyes out. There were definitely tears, but for the first time since our diagnosis - they were happy tears. I know our road ahead is long, but I have such a renewed strength in it all. I know this was our plan and I know it was given to us to live and make the most of. 

I know this post was super long and if you read it all, thank you! In case anyone wondered, our bigger boy is feeling better. Unfortunately our second-in-line to the bigness thrown is not feeling so hot. But that totally did not deter him from eating some scrumptious Pinwheel cookies while his big brother was at school. 

love that chocolately little face =)

With all that - I give you another gift for healing and a perfect description of how I feel right now.

Please keep thinking of and praying for our boy! Thank you to everyone who takes even a moment of your day to do so - its pretty incredible to this mama =)