Today, Lydia and I drove up to Kaiser Sunset in Los Angeles, where we will be delivering, and met with a new round of doctors. We had an echocardiogram with both a Perinatologist and a Pediatric Cardiologist to further detail Charlotte’s diagnosis and plan for treatment.
They are still leaning towards a straight forward transposition, but there are a few new concerns. Her pulmonary artery, one of the vessels they have to switch, is measuring a bit small. Almost half of what it should be. They assured us that this may not be an issue because she is still growing, but it could cause complications if it doesn’t grow large enough. There also appears to be a Ventricular Septal Defect (VSD) or a hole in her heart. This again isn’t necessarily a bad thing, as it can allow more mixture of blood between the ventricles, but they won’t know the extent of the hole until she is delivered. If it’s too big it can cause more complications. These are all things we really don’t like to hear; the unknown’s, the what if’s, the let’s wait and see’s, but we do still feel an overwhelming peace and comfort through it all.
A highlight was getting to tour the Labor and Delivery department as well as the NICU where Charlotte will recover. We were greeted by such an amazing staff and treated not as patients but as family. We probably met over twenty doctors and nurses and they each wanted to know our names and they each made us feel so comforted and assured that we were in the right place. We really felt a lot of love in that place. An intense moment came when Lydia and I walked into the NICU surrounded by a dozen or so premature and critical care babies. We were brought to tears by the site. Life is so incredibly fragile.
Our next cardiology appointment is in January. Please continue to pray for our little girl. That she would be healed. That her valve would grow to the perfect size. That the hole would seal up. That she would be restored.
Thank you for journeying with us. We love you.
Love, Jon and Lydia
My name is Amy Koslowski and I know Amy Ernst from YWAM Maui. I just saw her link to your blog on facebook. I will join you in praying for little Charlotte and can truly relate in your current experience. I am 27 weeks pregnant with our daughter, Hope. She has also been diagnosed with a severe heart defect. Hope has Hypoplastic Left Heart Syndrome, she is missing the entire left side of her heart. They can't fix it but will be able to do 3 open heart surgeries after she is born to help her survive into her teen years when we'll hope to find a transplant for her. This is quite the journey and I agree, only possible with the Lord. I believe that God will make us all better parents, spouses and friends as we allow Him to carry us through this journey. I'll follow along with you guys and feel free to follow us if you'd like: mendingheartsandbendingknees.blogspot.com
ReplyDeleteAmy, we've been keeping up with your story. The Ernsts are special people, huh? We've been praying for little Hope and you are right, there really isn't any way that we could do this without Him. In reading your latest blog, I see the echos of our story. The clothes, the anticipation, the what if's. We were saddened too that she won't fit into any of the newborn clothes people have gotten her. There is something about grieving what we want or expected that seems to be the most difficult for me. Praying with you through the pain and celebrations. Can't wait for our daughters to meet one day.
ReplyDelete- Jon