Fetal Echo Cardiogram Results...where we go from here.
Today was the day we went to the cardiologist up at Primary Children's Medical Center for a Fetal Echo Cardiogram. Basically what that means is an ultrasound where they look at all the chambers, valves, parts of the heart to find out exactly how severe Kayden's Heart condition is. As Explained in the previous blog post Kayden has Hypoplastic left heart syndrome (HLHS) which means his left side of his heart is underdeveloped. Below Is a picture of what a normal heart looks like compared to his HLHS heart.
With a normal Heart (Pictured on the left) you have 4 Chambers which include the Right atrium, Left Atrium, Right Ventricle, and Left Ventricle. The Right sided Chambers are responsible for receiving the deoxygenated blood (blue shown in pic) from the veins. The Chambers on the left side are responsible for then pumping Oxygen-rich (red shown in pic) blood to the rest of the body. In the picture on the right you can see that the left Chambers are not developed properly. Instead of 4 chambers there is only 3. The left side which is needed to pump oxygen to the body is not capable of performing that job. While Kayden is in the Womb this is not a problem because I deliver Oxygen to him via the placenta and Umbilical Cord. Once he is born though in order to survive he needs to be able to pump oxygen rich blood to his body or else he will die. There is a lot more complex small details that are involved depending on each child's situation no case is the exact same as another, but due to Kayden having a small hole (circled in right picture bottom left yellow circle) between his chambers surgery is an option! (This was such a relief to hear I was so afraid that they would not even be able to do surgery) They will monitor this hole throughout the rest of my pregnancy to make sure it does not get to small. If all goes well and the hole stays about the size it is now they will only need to give a medication at birth through the umbilical cord called prostaglandin which will keep the Patent Ductus open (the top yellow circle in pic on the right) that is a small opening in all babies that closes within the first few hours to first few days of life. This is very important that it stays open due to it being the route the oxygenated blood is getting from the left to right side of the heart. This will need to be kept open with the medication until he has his first surgery. If the hole is to small when he is born the Cath lab team at Primary children's will be standing by at my birth waiting for Kayden to be born and as soon as he is they will take him directly to the Cath lab and place a small balloon (shown in black ink on left pic) up through his right atrium into the small hole to keep it open this hole and the Patent Ductus are what will keep him alive the first few days as along as they are open. This is all very complex and I'm still barely beginning to understand it myself, but I hope it gives you all an idea of what Kayden is to expect when he enters this world.
I will most likely not be able to hold Kayden until After they get him situated with the care needed could be hours after he is born before I even get to see him sense they will rush off with him as soon as he is out. They told me to expect to not even get more then a look at him. Once they get him the care needed though I will be able to hold him until the first Surgery that first week of his life called the Norwood. This is the first surgery of 3 he will need within the first 2 years of life. This first surgery is also the most difficult and highest risk of loosing Kayden, but he has a 75-80% change of living through this surgery. Kayden Then Will be taken to CICU (Cardiac intensive Care Unit at Primaries) for recovery until he can come home ( they will give Jake and I special training on how to care for Kayden at home due to him being on oxygen and a possible feeding tube). If all geos well and he is born full term (39 weeks) I will be induced in order to make sure everyone is onsite and ready for Kayden to enter the world. this is how it will go for him. If he is early before 39 Weeks he will be sent to the NICU at primaries until he reaches the week he was supposed to be full term and is a good size. If he is not early we will not have to visit the NICU unless other complications arise.
Below pic of Norwood Surgery
This is by far the hardest trial I have yet to face in this life. There is no feeling that can describe how it feels to not be able to help your child. To save your baby. Kayden's life is in the hands of God and the amazing medical team who will do everything to save him. There are times I am angry at the situation until I remember there is a bigger picture and plan for all of us that we do not understand and wont understand in this life. There is a Quote from Thomas S Monson that I found on my mission " Difficulties allow us to change for the better, to rebuild our lives in a way Heavenly Father teaches us, and to become something different from what we were, better then we were. more understanding than we were, more empathetic than we were, with stronger testimonies then we had before". Last night was a rough one for me. I have tried to be strong through all the information and news that has been given to Jake and I throughout the last few weeks. Believe me though I have had my moments where I have just broken down and cried and asked myself "why?" "Is this my fault? my doing?" but I cannot allow myself to think that way. At least not for more then a minute. I know that there is a divine plan in everything and that Kayden is going to be one special Warrior. My little Heart Warrior. I just have to continue to have faith even when it is hard. Joshua 1:9 says "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest." Sometimes we might feel like we are walking alone, but those are the moments our Savior is caring us. He is with us Always.
On a happy note here is my 23 week baby bump picture:) Kayden kicks me all the time and I love being able to feel him move!
