Our Journey so far.......

How does one even begin to tell a story of so much sadness and heartache! Being pregnant has been such an amazing experience. How your body changes and how you look at life, unfortunately, I have not had a normal or happy pregnancy. I should be enjoying this amazing gift of life, and most days I do,especially when my sweet boy is so full of life and so busy! The joke between Chris and I is he is building the fortress of solitude (for those of you who know my husband you are smiling at this comment due to his love of superheroes). On those other days of relentless doctor appointments it's pure torture. Let's start from the beginning. At one of my first ultrasounds at 9 weeks the doctor noticed a calcification on the baby. This being a bright area on the scan of some abnormality. I was sent to a high risk physician who at 12 weeks at another ultrasound notice nothing. We did a first trimester screening for chromosomal abnormalities and it was a low risk of 1 and 10,000 chance of abnormalities. We felt like we were in the clear. We started shopping for adorable baby clothes, bought a crib, picked out his bedding, we started to have so much fun the way it's supposed to be! Fastforward to 18 weeks, we return to our high risk doctor and he notices on the ultrasou nd our precious angel has an abnormality with his heart. He suggests an amniocentesis, even though our first trimester screening was normal

, this will give us a more accurate percentage of chromosomal defects! For those of you mothers that have experienced that!!! OMG.....not fun. Anything that consists of inserting a 15 gauge needle through your abdominal wall to retrieve amniotic fluid is horrific. 2 and 1/2 weeks later I received my results and God willing they were normal of all chromosomal abnormalities. My world has been turned upside down in such a short period of time. I have completely given myself to god! If it wasn't for my belief in God, our families and our friends, Chris and I could not have gotten through such devasting news! We were then referred to a pediatric cardiologist. She was amazing from the beginning. She performed a 2 hour echocardiogram, which was quite amazing on how they examined each artery, vein and all the components of the heart while in utero. I love to see my baby boy on the screen, I love watching his movements and the cute things he does. He is very active and stubborn when doctors want to examine him. He reminds me of his daddy! :) All of my fears as a soon to be mom came true that day in April. Not only did my baby have a heart defect called A-V Canal, which is a congenital defect where there is a hole between the chambers of the heart causing extra blood to circulate to the the lungs. He also has: 1. Dextrocardia- a condition in which the heart is pointed Toward the right side of the chest when normally it should be to the left. 2. Total Anomalous Pulmonary Vein- Pulmonary veins are blood vessels that return blood from the lungs to the one side of the heart. This is a rare abnormality were the veins drain abnormally by an abnormal connection. This is the doctors most concerning aspect. There is a very poor prognosis of the surgical outcome and long term affects of the baby. They do notice the lung being underdeveloped due to this condition. While baby is in utero he is fine, I am doing all the work for him. Continuing to keep the blood circulating to keep him alive. Upon delivery and when the umbilical cord is cut he has to do it all by himself which can cause backup of blood in his lungs. It's very hard to hear has a parent that once he is born he will be blue and will be breathing very hard and fast. Surgery is a must pretty early after delivery to correct this defect. Very complicated and very rare are two things that are not in our favor. 3. Pulmonary Stenosis- The pulmonary vein is obstructed which inhibits blood flow to the right ventricle of the heart. Learning all this in one day was so overwhelming. Hearing that your baby might not survive is a nightmare! I carry it with me everyday and every second of everyday. But I need to believe that it's in god's hands. There is a plan for everything, I don't know what it s yet but I know God is here with all of us holding our hands.. At 23 weeks The cardiologist sent us to Akron children to meet a few of the high risk doctors there and to meet the surgeon. Another hard heart wrenching day for us all. Another scan was completed by our cardiologist along with her partner who is well-known for being one of the best. The same news was given to us just in a complete more advanced fashion. We were then introduced to the Cardio-thoracic surgeon, that meeting was very intense and very emotional. Most of it was a blur but what I do remember was he wanted to take all this information to his panel and see what they can do for us. He told us it's a very rare condition in which they have not seen this type of heart defect before. He did not get our hopes up but when we left there we felt confident with these physician to maybe give our little boy a chance of a normal life. At 25 weeks another visit to the high risk doctor, an ultrasound was completed and a measurement of my amniotic fluid was elevated. Not a critical level but one that got the attention of the physician. They ordered my one hour glucose test a few weeks early to see if this could be a reason for the increase of the fluid or if it was a cause from the heart defect. Of course, my glucose level came back high. So now I need to check my sugar 4x a day to make sure they are not out of control. They have all been excellent readings. With my change in diet and checking my sugars I can maintain normal levels to not harm the baby. On top of all the critical news we hsve received about our little angel. Now I have Gestational Diabetes to add to it all. Just this Thursday I received a phone call from our cardiologist. She wanted to meet with us in person to go over the discussion the physicians had in Akron. We had seen her today and she gave us the news that they feel that this surgery is to high- risk for them and it's something that they will not attempt. We were given a choice of seeking a second opinion at the University of Michigan or seek comfort care after the birth of our baby. Ochris and I believe in or hearts that comfort care is nt an option for us. We might have been given a poor prognosis in Aron but maybe Michigan will give us a more hopeful outlook. Every physician that we have seen we have asked them if there is hope, the same answer every time is there is always hope. The cardiologist told us that he does have some good aspects of his heart that could show for a successful surgery, Even If Chris and I were given a one in a million chance of our baby surviving and living a normal life we are going to do everything we can to try.