Adrien the fighter

From Emily 01/21/20

Our journey batteling CHD.

Its not been an easy one thats for sure. Nothing can prepare you to recieve a diagnosis that will not only effect one of your children for the rest of their lives but the WHOLE family.


We were given the news at just 20 weeks into pregnancy that our baby has a congenital heart defect. Some are minimal and some not so much. Unfortunately, our son Adrien was born with one of (actually several) of the more serious defects.


We were told to plan for the worst and expect Adrien to have his first Open Heart Surgery at just a few days old. Thankfully, we were able to skip the first procedure all together by instead having a heart catheterization where he had a stent insterted into his PDA (Patent ductus arteriosus). This happened at 10 days old.


Since then Adrien has had close to 5 heart Catheterizations to balloon the stent in order to keep giving his body time to get to the ideal age and weight for him to have the Glenn Procedure (Open Heart Surgery) to repair his heart until the next stage. He has also had a very difficult time eating due to his cleft palat and his heart tiring out too quickly to finish a bottle. (More than 30 minutes drinking a bottle is so much exersise for him its like us running a marathon) Because of that, he had surgery to put a feeding tube into his stomach.


After an extended stay at the hospital following Adriens birth & several hospital stays adding up to a few months with minor setbacks in between- we finally got to the day we have been working so hard to get to. His first open heart surgery. 5 and a half long hours of waiting, the surgeon came to us with pictures and details of how it all went. The first thing he said was "your son is a fighter". Everything was a success. Other than a possibility of a heart catheterization before we go home, we shouldn’t need another open heart surgery until Adrien is 2 to 3 years old. PTL.

Adrien is healing well from the surgery- praise the Lord. But unfortunately we were just told he will definitely need the heart catheterization sooner rather than later. During the surgery they were unable to do anything with his azigus vein. This particular vein is stealing his oxygenated blood from going to lungs causing his oxygen saturations to go low. Our Cath Dr has a tough job ahead as this is not an easy place to get to but he is very hopeful he can make it happen. Once this is successful & he is recovered, we will hopefully be seeing a light at the end of the tunnel as far as our extended hospital stay is concerned.


Our family has had to adjust to all kinds of changes the past 6 months. Although our oldest kids (Anthony, 13 & Alysia, are "older" they have felt this emotional rollar coaster just as much, if not more than we have. It has been the toughest to be separated from them while one of us is with Adrien 24/7 and sometimes both of us are with him depending on the situation Adrien is going through at the time. In addition to one of or both of us away from home and out of work, long trips to Miami back and fourth for quick visits as often we can and lots and lots of video chats have been the reality for us as of now. Thankfully we have family and friends that have been there to love on them and keep their routine as "normal" as possible while we are not there but it is SO TOUGH.


In the midst of all this, we are batteling with Medicaid & the Social security office to consider him "disabled" as this is a life long condition that cannot be cured, only so that we can recieve medicaid to give him full coverage. Our current health insurance does cover a portion of his medical needs but the copays and deductibles are still very excessive.


Adrien is on 9 different medications that he MUST take several times a day. These medications cost between $30 and $200 each month AFTER the insurance has paid their part; in addition to his feeding pump, bags and supplies, his prescribed formula, g-tube supplies & pulse ox machine.


We are not the kind of family that wants to ask for help when its needed. We were not quite a fan of this go fund me, we dont want to seem as if we are looking for an easy way out. We really are fighting with all we have to manage through. But as time has passed and we have seen how real the struggle has become for our family as a whole that there are really people in this world that not only are praying for us daily but they are asking how else they can help & we thank you for that.

His actual heart diagnosis is:

Single Ventricle

Left ventricular hypoplasia (HLHS-Half a Heart)

Complete ateioventricular canal defect-unbalanced

Mitral Valve Artresia

Double Outlet Right Ventricle

Pulmonary Stenosis


In addition to other concerns-
-Mosaic chromosomes and the other effects theyve -had on him, still needing further research
-Cleft palat that will eventually be fixed once he is nore more stable.
-GERD-(Severe acid reflux)