Just wanted to post a quick update about how our specialist and OB visit went today... Two appointments in one day too might I add! We saw Dr. Adair at the ROC today (specialist) and he was hilarious. I liked him much better than our last visit. He helped lighten the mood a lot. It turns out we will get to see Andrew EVERY time we go to the ROC so they can keep track of measurements, his heart, and stuff like that. He's 2 oz away from 2 lbs at 26 weeks! He's going to be a good size when he gets here I'm hoping. All of his measurements are on track (so they don't think he has any kind of genetics issues) which I took the genetics blood test (not the amniocentesis one)  and will get those results within 10 days. He told us to go directly to Erlanger if I have any issues and Erlanger only. That way they can get me flown out to Atlanta (which we kind of expected that already). The only thing that's really new is they have me counting his movements and kicks EVERY day in a 2 hour period after breakfast and a two hour period after dinner. I have to get 10 movements in both those 2 hour time frames or I have to go in to the hospital to check on Andrew. So now I'm keeping a log of every movement up to 10X2 in those two time periods.  The reason for this is he said sometimes as they get bigger their movements start getting weaker and weaker and slowing down when they have HLHS and sometimes can cause heart failure in the womb and we definitely don't want that, so I'm counting away at all his movements. Lucky for me I got a super active little booger ;). The specialist will see us again in 3 weeks then as time gets closer for him to get here (38 weeks) I will be going every week for closer monitoring. My heart rate was still high today at both visits (130+ resting). :/

As for my regular OB (Dr. Anderson) he said everything looks good as can be. My BP wasn't high this time and all my bloodwork for them looked good and came back in the clear that I had done last time. He had just gotten caught up in the loop with my paperwork from the specialist and Grady and felt so bad about our situation. He said when my paperwork came in and across his desk that a movie had come to mind and he had thought of us. He took me to his office and spent a good 10 minutes trying to find this movie that was on Netflix for Shaun and I to watch that we could relate to. "Something that God made". We see him in 3 weeks again too. TONS of appointments! PS Sugar test is next visit....Yuck!

I know that everyone has been waiting on our update after today. So much to really take in and process... We saw 5 different doctors in our visit today. Lots of questions did get answered though, so that made me feel a little better. Little Andrew’s heart is in fact HLHS (which we knew it was) and they gave us the specifics of his diagnosis. He has mitral atresia, aortic atresia, and coarctation. The left side is very small and the mitral and aortic valve in the left side of the heart never even formed, they’re not there. That side is not able to really do anything. The coarctation is where the aorta valve that sends out blood to the body is also narrow in one part and it has to be fixed as well. They have three sizes as far as severity goes when it comes to enlargement on the right side because of the HLHS, and his is moderate. The cardiologist said it wasn’t the most severe (large) but it wasn’t the best (small), he’s in the middle and that’s to be expected with this diagnosis.

I will be seeing little Andrew sooner than I planned or thought on. They are inducing me at 38 (Around July 21st) weeks or sooner if the following appointments bring up any concerns with Andrew. As soon as he gets here they will stabilize him (have a hospital room full of doctors) and then let us see him real quick before he heads up to NICU. I’m not sure if this means if I can hold him or not, but I will take it either way. He will be stabilized and waiting for up to a week before his first surgery but will have a tube through his belly button (it’s already open from the umbilical cord) and will push medicines through there to keep the two holes present in the womb open (this is what keeps his blood flow actually flowing through the body, and also be a drain point if needed I believe they said. They will run tests, ultrasounds and whatever he needs as he’s being assessed once he gets here (ventilators if he needs help breathing etc.) feeding tube for sure. He will also come home with a feeding tube through his nose for a while after released from the hospital. There are some cases where these babies are born there (Grady) and then rushed by ambulance after stabilized to Emory to b worked on ASAP. So it’s really a wait and see game on how severe his case is after he gets here.

The cardiologist did tell us that once he has the surgery that after he’s going to get and be pretty ill. He said it is a very serious surgery and lots of "things"  the cases and each HLHS baby are different, but to be done. His little body is going to be pretty rough looking after surgery, but should heal over time pretty good. He said he didn't like giving percentage rates because they vary with the severity of each case. BUT the average success/survival rate is about 90% since they are such a good hospital/team. The goal after surgery is to keep infections away, make sure there are no complications from the surgery, and that he is able to get weight put on after surgery. Weight gain is the thing with HLHS babies and the length of time and size between procedures. He said Andrew’s stay should be expected to be a month. Longer if need be, but that’s what his situation is looking like now. After he’s released to go home and looking better he will see a cardiologist every week until the series of surgeries are done.

On the other hand we got one of the best doctors to work on him at Emory and Emory is rated #4 in the whole country when it comes to pediatric cardiology surgery. So that was good news to me and peace of mind. I had already looked at and hoped for this doctor from the beginning.  If I go into labor early I will be assessed and if it will be enough time to fly me out by helicopter then that’s what they’re doing to get me to Grady/Emory ASAP. If I have him they will stabilize him and then get us flown out there.

We go back in a month and meet everyone else, tour both hospitals, and get all info on the logistics of everything. We meet the surgeon and the surgical team and any other doctors that we didn’t get to meet today. They are going to do an Echocardiogram on my heart and make sure my heart can take the delivery stress since my hr is staying high and my blood pressure was high last time. If not, then they will take him by c-section more than likely…so lots to take in, but we are finally getting a plan together. Life will never be the same after this point for our family.

I told a story, it looks like I’m updating before my appointment in a few weeks. First, I want to talk about what my sweet girls have been doing. Our girls keep asking us to eat out, go to the movies, or “fun” places and we reply back that we have to save money for brother because brother is going to cost us a lot of money soon. (Uncertainty of how long and cost of ATL stay if we can’t get into one of the Ronald McDonald houses and food and necessities etc…just a lot of concern and unknowns…STRESS!) Well the girls spent one day looking over the entire house for probably a good hour and started collecting money in a jar for brother. I thought it was the sweetest thing (because everyone knows that when a kid finds money it goes right to their pocket/collection for themselves.) Even the smallest of gestures can put a smile on your face when coming from such a sweet and humble heart.

We’ve also began the process of trying to explain brother’s heart condition to the girls. It’s not easy trying to answer all the questions they have because we just don’t know at this point what’s going to happen. They keep asking when they are going to get to meet brother and if they’ll get to go to the hospital to see him (I don’t even know if Shaun and I will be able to hold him or not after he’s born), so it’s been tough…I think shortly before it’s time for him to get here we are going to either buy something special from sister’s to put with brother in the hospital or have them draw some things for him…something to help them feel closer to him since he’s going to be in the hospital a long time. We’ve shown them the “after surgery” pictures so they will understand what all the wires and tubes and bandages are on their brother…I’m still definitely not ready for that one at all!

Other than that we’re starting to “cope” with brother’s serious heart defect. We definitely couldn’t have come as far as we have without all of our family and friends’ and even strangers’ support. God has given us some wonderful people in our lives for sure! Baby Andrew will have some wonderful big sisters too ;)