Touring our new "home" away from home

Today was our big appointment day. At 9:30 this morning, we went for our fetal echocardiogram. The poor ultrasound tech had the hardest time getting the pictures she needed of Wyatt. Not only is he breech, but his ribs are really in the way now, AND the little dude had the hiccups. After reviewing all the data, we met with our cardiologist. He said that Wyatt's heart is right where he would like it to be, and that things are on track. His atrial septum is nice and open, as it should be, and his PDA (patent ductus arteriosus) is also nice and open, allowing for blood flow as needed. Without these two things being open, we would be in a MUCH worse situation. 

Then we met with our surgeon. He explained the anatomy of a normal heart, the anatomy of a HLHS heart, and the anatomy of Wyatt's heart. He then explained that during the Norwood (the first surgery that Wyatt will face, 3-6 days after birth), Wyatt will be put on a heart and lung machine, and they will go in and remove the "wall" of his atrial septum, to allow for maximum mixing of the "blue" blood and the "red" blood. They will also go in, and widen his aorta, which is also underdeveloped (a symptom, if you will, of HLHS). They will also insert a shunt from his right ventricle to his aorta, which will provide a restricted amount of blood to his lungs, so as not to over flow blood into his lungs. The explanation of the Norwood as given to us on paper is : "The large main pulmonary artery and small aorta are fashioned together to make a new, larger aorta. There is a small tube (shunt) put in to connect the lung artery to the aorta. This shunt gives blood flow to the lungs. The wall that separates the top two heart chambers is removed (atrial septectomy). The narrowing of the aorta is opened. The connecting blood vessel is removed."

We were able to tour our surgeon's OR - at our hospital, each surgeon designs his own OR, so everything is to his liking. It was interesting and scary to see THE room where Wyatt will have his Norwood. We also toured the NICU, and met the head neonatologist, who explained Wyatt's care during his stay in the NICU, and we toured the PICU, where we will spend recovery time after surgery. We also toured the Labor and Delivery unit, to see where Wyatt will be born, and where I will recover. 

 
In all, it was a good experience. It is nice to be able to picture the places we will be in, rather than creating a picture in our heads. It did make the entire situation really, really real, but not necessarily in a bad way. Both DJ and I feel confident in our surgeon, his outlook on HLHS, and his positivity on the situation. Neither of us are thrilled with the NICU, as it is just a scary place to be, but the PICU is much better. We will have our own room for Wyatt, and there is a bed where one of us will be able to stay the night at the hospital with Wyatt each night. We will be able to have photos, and any gifts Wyatt received, to make it a bit more "home" like while we are there. 

I can say that today I am feeling optimistic. I feel like we have a fighting chance, and I feel like we have a tremendous medical team backing us. Our surgeon has performed the Norwood procedure literally hundreds of times, and is realistic about the mortality rate and the possible complications of surgery. The NICU and PICU staff are well equipped and ready for us. I think we can do this. There is a way. 

Finally, for any other heart family out there looking simply for the information, here are some "interesting" things we learned throughout the day:
1. Our surgeon recommends we wait to have Wyatt circumcised until after the Glenn procedure. 

2. Our surgeon is mentally staging the Norwood at 3-4 days old, the Glenn at 6 months old, and the Fontan at 2-3 years old.

3. Most information on the Norwood will state that a Blalock Taussig Shunt will be used, but there is another alternative, which connects directly to the right ventricle, which allows for more stability in HLHS kids - this is the option we are going with.

4. The doctors REALLY appreciate when the parents have done their research, and are a bit more informed on everything going in. They like that we realize that transplant isn't as easy as it may seem, and that it is not necessarily the best option, and that we have taught ourselves not only about HLHS, but also about the surgeries. 

5. Even the people who work for the hospitals and doctors offices, who are supposed to "get it" don't really understand the way you feel. There are certain people involved in our care who have heart children, who are a bit more connected, but for the most part, the complete understanding you want them to have just isn't there. It is something I have grown used to.

6. The NICU is terrifying. Seeing those poor little babies and the sad looks on their parent's faces was not any fun.

7. The NICU has really strict rules, but even those can be bent. We were concerned about Austyn being able to come visit Wyatt before surgery, as we feel it is important for Austyn to meet Wyatt before he has so many tubes and things, when its not quite so scary. The neonatologist said that while more than one visit isn't likely, it can be arranged for Austyn to come see Wyatt, even in the NICU.

8. There is a way to do direct blood donation - where family and friends can go donate blood, in Wyatt's name, around the day of birth. The blood that is compatible will  be used in his surgery, and the blood that is not compatible will be given to the blood bank to be used by people who are compatible. That blood still gets Wyatt a "credit" towards blood for his surgery. The doctors and the hospital love this idea, and are super willing to help you set it up, if it something your family is interested in. We will be doing this for each of Wyatt's surgeries.  

9. Even with all the negativity, we are SO glad to have all the information we have. We feel so much more prepared and ready knowing as much as we can, even when some of it is sad, or worrisome. We are the kind of people that would rather know what we are facing, than go in blind, and are thankful we have been so open to all the information.

We have about 8 weeks left before this all begins. 8 weeks. It is going to be here so, so soon.