The appointment was scheduled for 1pm, so since Shane and I were leaving from my parents house in Lockhart, we left around 11:30A just to be careful. We got there at 12:15p and was given a stack of new patient paperwork to fill out which is expected but then we had to wait another 45 minutes until the doctor could see us. (Our original scheduled time) Meeting the new Doctor (supposed be one of the best pediatric Cardiologist in our area) was definitely something interesting at first. He shook mine and Shane's hand and just kind of asked us about our history and what brought us to him. He is not one of those friendly doctors you can just tell anything and everything to, but he was very factual and knowledgeable.
He then set up the ultrasound machine and took us to another room to be examined. He didn't say much at all kind of just set me up and began with the exam. I then wanted to break the ice and ask what he was seeing and he cut me off saying "I will explain everything when I am done, I need to be completely focused on this exam. Note taken! I didn't say a word for the rest of the appointment which led Shane and myself to doze off plenty of times during the exam.
The results were not what we expected. If you remember our first Echo was posted here and we had so many questions going into this Echo that we wanted to make sure we got answered. Our Doctor (which shall remain unnamed unless you would like a referral which we will gladly give you) started out by stating what all is wrong. He began by tearing off the paper from where the patient sits on in the room and drawing a heart. He said that the ASD that we were told from our last appointment is not what he could see as a major problem and seems to appear the regular size of a hole that all babies have before they take their first breath out of mom, in which the hole closes majority of the time (80% is what he said). He calls this a PFO(Patent Foramen Ovale) and not a full ASD (Atrial Septal Defect) at this time. Rochelle does have a VSD (Ventricular Septal Defect) which is a moderate to large hole in her heart. He then went on to say that surgery would not be the best option for a child with her condition because the complications that could occur with major heart surgery would be worse for someone who has Trisomy 13. He said it wouldn't be needed right away and that the side effects that could occur 2-3 months down the road would be where the hole allows more blood to be pumped to the lungs causing her to probably be placed on diuretics. He told us that the life expectancy of a child with Trisomy 13 is usually not longer than a year and we should think about doing pallitative care (make sure she is comfortable at all times at home) and live her life to the fullest every day. He then went on to say if she makes it past a year and is stronger and able to tolerate surgery then we can revisit the surgery then.
Then came all of the positive aspects from the exam which he started out by saying that I should be able to have a normal vaginal delivery and shouldn't have any complications related to Rochelle's heart. He started pointing out the areas of the heart that were normal which were the valves, the aorta, the size of the heart, the blood flow, and the beginning part of the pulmonary arteries. He said if we ever have any questions after she is born that he would be glad to see her and do an Echo of her heart then and if we had any questions at any other point in my pregnancy I can always call him directly and he will answer anything we needed.
I could finally breathe with somewhat knowing what lies in the next 12 weeks of this pregnancy. We are going to finally register at the same hospital that we delivered Brielle at with the same doctor and finally somewhat feel comfortable with how the labor and delivery process will go. God has given us so much strength to find out as much information as we possibly can to be able to help our baby girl when she arrives and He continues to provide us with the answers at the right time. Thank you so much to my Mom, Adriane and my Sis in law Tiffany who remembered how big of a day this was for us. We love y'all and appreciate you being in our lives.
Please continue to say prayers for these next 12 weeks and beyond. We can't wait to meet our precious baby and hope to continue to grow her inside of me as long as possible. Thank you everyone :)
The picture our MD drew for us. How amazing! He was great at explaining as well!
Prayers for you and yours as always.
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