Emery Catherine’s Story

Site created on February 24, 2019

Our baby girl, Emery Catherine, is expected to enter this world on May 20th. Due to some very unfortunate health conditions that she has been diagnosed with, it is not expected that she will be with us for long after birth, however, we are using this time to cherish each moment, kick, ultrasound viewing, and heart beat monitor we have to experience with her.

**This blog will show the newest entries first unless you change your settings. If this is your first time visiting, we suggest you start with reading more of "Emery Catherine's Story" right below this and then continue to the first Journal entry through the most current.

Beginning with the 20 week anatomy scan (Jan. 4) and multiple other echo-cardiograms of Emery's heart, it was determined on Jan. 7 that she has a rare congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS), along with a restricted aortic valve. Essentially, without extensive surgery and intervention, the left side of her heart will not function or pump oxygenated blood to the rest of her body after birth. Additionally, genetic testing revealed that she also has a chromosomal abnormality known as Turners Syndrome, along with a translocation of chromosomes 3 & 12. While each of these conditions diagnosed alone are serious conditions, they can be treatable (not curable) when diagnosed separately. HLHS would require at least three extensive open heart surgeries (the first when Emery would be less than one week of age) and ultimately require a heart transplant later in life. Unfortunately, based upon the very limited available data (we are literally close to 1 in a million - not a figure of speech), very few babies with a combination of Turners syndrome and HLHS survive these extensive surgeries and if they do, they do so with much pain, agony, and severe health conditions the remainder of their life. Those that do not make it through the surgeries, spend their short life out of the arms of the ones who love them the most, while experiencing suffering until they pass away. Aside from all of the issues, it is expected that Emery will go to term without any complications while in the womb.

After much research and countless doctor visits between both Ochsner and Texas Childrens' Hospital, we were never given any sense of hope that the outcome of any intervention would be a positive one. We have prayed endlessly, sought the opinions of some of the most brilliant and compassionate medical professionals, and confided with each other to make what we hope will be one of the hardest decisions we will every have to make in our lives. In the end, it is our gut feeling that with the multiple diagnoses Emery has received, if any intervention were attempted, it would not only prolong the inevitable, but provide for unnecessary pain and suffering. We feel that it is our job as the parents of Emery to ensure that she can have the best and most comfortable life that she can have - filled with love. In order to do so, and considering the negative outcome of any medical intervention, we have elected not to intervene and rather provide palliative (comfort) care after birth. As the parent's of Emery, it has been our choice to go through however much emotional suffering we have to go through and for however long it may last, only to ensure that Emery is provided with the most comfort and least physical suffering possible during her short life with us after birth.

If you are reading this, we ask that you keep the three of us in your prayers during this trying chapter of our lives so that we are provided with continued strength and Emery is provided with protection and love. It is so important to us that everyone (especially those that are closest to us) use this blog to keep our support system informed each step of the way. We are hoping this is a great place for you to find answers and understand that we do not want to be silent or avoided during this trying time. At the same time, please understand that if we do not answer a call, reply to a text, or avoid conversation, it is only because at that instant it is not a good time. Throughout this journey, there are many ups and downs and sometimes during the downs, we may just not be in the best state to discuss. Please do not take any such avoidance personal and know that when it is a good time, we will certainly respond. You should know that it is more hurtful to each of us when the topic is avoided all together, rather than brought up when it is not a good time. That being said, please do not ever hesitate to reach out, as we are comforted every time we hear from each of you.

Words cannot explain how thankful we are for all of the prayer, love, and support we have received from our family, friends, co-workers, neighbors, and complete strangers throughout this difficult time. We are forever grateful and pray that God may grant you with many blessings in return for your continued support!

With love,

Kim, Jared, and Emery Catherine

Newest Update

Journal entry by Kim Bordelon

As we are driving in the car on our way to be with our families gathered for Thanksgiving, we cannot help but to reflect on the past 6 months since our angel grew her wings, and we prepare for this holiday season without her.  I sit here thinking how we should have a 6 month old screaming in the car for the 3 hour drive, and I should have been “stressing” all week on packing for a few days, and what she would wear for her first Thanksgiving all while trying to squeeze in family pictures for our first Christmas card. Instead, the truck is quiet, I never got to shop for “the outfit”, and another year goes by that we don’t send out Christmas cards of our growing family. As anyone can imagine, every emotion is present: sadness, anger, jealousy, anxiousness, confusion, but at the same time we can’t help but to feel beyond thankful to be surrounded by so much love. This past year is what we like to hopefully think will be one of the worst years of our lives. We will never even begin to fully explain the challenges we faced as we prepared for months to meet our daughter, give her the best life we could no matter how short, and lay her down to rest peacefully. Even though this year has brought upon so many trials, we are forever grateful that God trusted us and made us Emery’s parents. We are thankful for the six most wonderful days we were blessed with her, which were filled with so much love and joyfulness. Seeing the impact she made and continues to make on so many lives comforts us knowing that all of this pain has a purpose. We are beyond thankful to our parents, families, and friends for your patience and understanding as we know that we are not at our best, yet you all continue to show us so much love and compassion when each of you are hurting as well. We are thankful for every random text, phone call, e-mail, and note just checking in on us. For every heart resemblance or turtle significance that reminds you of our sweet girl; knowing that Emery was thought of and remembered brings more joy to us than you will ever know! For every parent who has told us that they try to be better parents since hearing our story, for anyone going through a rough patch and question their faith but then remind themselves you can’t do it alone, and for everyone who doesn’t know what to say but prays for us…thank you! From the bottom of our hearts, we are forever grateful for each of you who have gotten us through this year. We have found strength when we have felt like we couldn’t go anymore and truly believe it is because of the power of prayer from each of you that gets us through.  As we all embark on this holiday season, remember to squeeze your loved ones extra tight and don’t take a second for granted. May God Bless and have a Happy Thanksgiving!

Love, The Bordelons

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