I know it’s been a bit since our last post, but life has gotten in the way and we have been trying to keep busy during this time until we get our genetic test back.
Then we had to endure the longest wait so far… the dreaded 12 week wait. Yes you read that right, TWELVE freaking weeks…. That is how long it takes to get back the genetic testing we are doing. We opted to do the Whole Exome Sequencing aka WES, this test combs through 20,000 (yes twenty thousand) genes and proteins each from the three of us. This decision came after all other genetic testing that came back, did not show signs of genetic disorders in Emma. That is great news right??? Well yes, while it is great, it does not rule out that Ryan or I could be carriers for a genetic disease that could affect any future children. And there was just no option, it had to be done. Because we just knew that we could not get pregnant again not knowing what could happen. So on December 20, 2018 we went in to have our blood drawn together. While in the meeting with our fabulous Genetic Counselor Rachel at the Cardinal Glennon Fetal Care Institute, we had to go through quite the questionnaire, and of course we had our own set of questions as well. The main one being “What if this test comes back negative, does it cover all the bases?” We were asked also if we wanted to know secondary findings on ourselves, such as precursors for cancers, or other health issues that we may not have yet, but have the markers for eventually having.
We both decided we would like to know, I mean yes it is scary if they come back with something, but if it is something preventable we want to know so we can stop it from happening and be as healthy as we can for our future kids. They did say if they found something else in Emma that wasn’t genetic or would affect future children, but could have been something down the road to affect her that we still probably wouldn’t know about it, just because there is nothing we could do about it since she did not survive.
Since all other testing hasn’t found a genetic cause, we are very hopeful and optimistic that our results will be positive. But I am not getting my hopes up to then be let down. I am going in half and half, I don’t want the big shock of devastating news. The past 8 weeks have been full of anxiety, unknowingness, and worry.
But we have also tried keeping ourselves busy, we completely gutted and remodeled our bathroom upstairs, we put together our collage wall for the living room, and we even got new furniture for the living room. We have just about every large project done for the house we have. Which is great news considering in a few weeks Ryan’s schedule will pick up with side jobs due to the nicer weather. The past 8 weeks have been a lot of putting our faith and trust into God, that he will guide us in the right direction. We have decided that we are most definitely ready now to start having kids. We both catch ourselves seeing other babies and kids out an public and pointing out how cute they are etc, then stating how we can’t wait to have a child again.
We know that no child will EVER replace Emma, and we are by no means trying to replace her by getting pregnant again. We just want to be parents and have the experience of having children to take care of. We both really prepared ourselves both mentally and financially after finding out all of the care Emma would need after she was born. Multiple specialist appointments, surgeries, braces, therapies etc. We were ready to take on whatever challenge would have come… Except for Infant Loss, that is something no matter what you are told, you are NEVER prepared fully to accept or go through such a tragic situation. We have since come to terms with what has happened, and while we obviously aren’t happy with the outcome, there was just literally nothing that could have been done to prevent this.
We know that our sweet Emma’s health conditions are just not something that had she survived, would have had a good quality of life, she would likely have been in the NICU for quite some time if she ever came home from there. We fully trust our medical team and are happy to know what kind of care we will receive when we are pregnant again.
This would not have been so easy had we not had the care and support from our medical team, family or friends. And quite honestly the support from our blog followers means more than you all will ever know. We are so happy you guys are following and learning more about our Angel. Please feel free to share with anyone going through Infant Loss, or anyone you think could benefit or would like to learn more. Thank you again for following our journey. We hope to have some positive news come March 21st 2019, and of course we will be sharing it with you all either way.
Katie, Ryan, and Emma.
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