Last Fetal Echo

Hey everyone so it has been again a few weeks sense our last update. We went in this morning for our last Fetal Echo at Primary Children's to monitor the hole in Kayden's heart. Good news is it has not decreased in size. Bad new is it is more restrictive then what we thought meaning there is blood flow that is backing up into Kayden's lungs causing there to be a higher amount of pressure then normal. Right now that is not a problem but it could be a potential problem after he is born if his lungs continue to have high pressure due to that being there norm(sense that is all they have known). This adds to his risk factor and chance of survival. Originally we were told that due to him having HLHS and one kidney his chance of reaching the age of 5 years old was about 65%-70%. Normal children with no problems at all at birth is 80%. Due to him having the additional risk factor caused by the restricted blood flow in utero his chances of reaching 5 years old drops once again to about 55-60%. If he had complete restriction though meaning the hole he has that they are monitoring was not there at all his chance at survival would be below 50%. Lets just say we are very grateful that the hole exists and gives him a better chance at life.

We still do not have an official day of when I will be induced they will start monitoring me at 33 weeks and go week by week depending on how my body and Kayden are doing. We hope to hold out until 39 weeks that would put Kayden in a better situation due to being developed more, but you never know when labor may kick in so the day I will be induced will not be known until we get closer.

Something we were excited to hear today though was because his hole has not gotten smaller I most likely will get to hold him for a few minutes before they take him to the CICU ( Jake will be going with him) and the Cath lab may not be needed. However they will still be present and ready to go just in case.

They are hoping to do surgery 2 days after he is born as long as everything goes to plan once again you never know until the time comes how Kayden will be doing or if there are other causes for complication in his body that they are unable to detect in utero.

Something very sweet is an organization called Sisters by Heart sent Jake and I a heart care package :) This organization helps inform and connect other HLHS families across the country for support, encouragement, and in my opinion to not feel so alone. below is a photo of what they sent us.

We wanted to THANK EVERYONE who has given us support and love through this journey so far. It means more than anyone will ever come to understand. It is not always easy to stay positive when everyone in the medical profession keeps dimming the lights you are trying so hard to keep on. We do not know how much time we will be blessed to have with Kayden, but we are forever grateful that he chose us to be his parents, and will Treasure every second, minute, hour, and moment we are blessed to have with him. Only the sweetest of spirits are given challenges like these to face and we know our boy Kayden is more than special!