Friday, March 16, we drove to Primary Children's hospital for the Fetal Echocardiogram. I was way paranoid about getting there on time, so we arrived unexpectedly super early and had to wait an hour.
A Fetal Echocardiogram is an intense ultrasound--about 50 minutes long focused only on the baby's heart. The tech took still shots, videos, thermal blood flow maps, heart rates, measurements, etc. It was all very scientific and still just as blurry as any other ultrasound we've been too.
After the tech got all the shots, we moved to a consult room where the cardiologist met us to review the results. It was a really nice room--comfy couch, fluffy cushions, nice furniture--like a living room. It made me way too nervous and I was sure that nothing good could come of a conversation with a cardiologist in a room this "comforting". I was right.
Our baby has a very rare and life-threatening heart defect called Hypoplastic Left Heart Syndrome (HLHS). Without surgery it is fatal. Even with ideal treatment conditions, it is not a long life.
This does not appear to be a genetic defect. Something just went wrong in the early stages of pregnancy and would, in most cases, have ended in early miscarriage. There is no way we could have caused or prevented it. Since blood flow in a fetus is different than blood flow in a newborn, this baby will live easily to full-term. We will experience a "normal" pregnancy, labor, and delivery. At this point there is little anyone can do. Life for us will be pretty normal for the next 3 months, except for a few more doctor's appointments, a few more tests, and a lot of soul searching.
We have detailed some answers to more common questions in the side bar at the right. Please direct any of your questions there and we will post answers as we learn them. There are also some video explanations of the surgeries. We will continue to post more details and different aspects of this journey as we experience them.
Obviously this has been, and still is, a very raw and emotional time for us. We appreciate the struggle it is going to be for our families and friends as well. We have found great comfort in our faith. No matter what happens, it will be okay. Families are forever. We truly believe that. We pray for guidance, for strength and for comfort. Thank you for your prayers, love and understanding.
Wow! Melissa and Jonathan, we are so sorry! What a HUGE decision you guys have to make. We are behind you whatever you decide.
ReplyDeleteI have no idea how you feel, but I know I want to be a source of strength and comfort to you two and Chelsea.Please let me know how I can help. I know that Heavenly Father is mindful of you and this GREAT challenge! He will hear your prayers, and most likely he will send you help through the means of family and close friends! I love you guys!!
ReplyDeleteI love you guys! Thank you for making this blog. We are there for you and are praying for you. LOVE your last paragraph where you say, "We have found great comfort in our faith. No matter what happens, it will be okay. Families are forever."
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ReplyDeleteI wish I were there to give you a hug. What a blessing to be so close to the only hospital in 6 surrounding states that treats HLHS. The Lord is watching over you. May His strength be with you. We love you very much and would like to give any assistance we can. Even though we're not right there please let us know what we can do.
ReplyDeleteI'm sadden to read this. for I wish no mother to know what it's like to have an angel child. Yet, It's a very special thing, an experience I'm honored to have had. get to know this angel, discover who they are. You will create very special memories that you will look upon with fondness for a life time. And when they are near as they often will be, you will recognize it because you know them. ~Marie
ReplyDeleteMelissa and Jonathan, our thoughts and prayers are with you. I wish there was more we could do. One thought crossed my mind - Elder Uchtdorf's talk from the general RS meeting when he said: "Just think of it: You are known and remembered by the most majestic, powerful, and glorious being in the universe! You are loved by the King of infinite space and everlasting time. Forget not that your Heavenly Father loves with an infinite love."
ReplyDeleteI am impressed with the strength of your faith, and your willingness to share your story. Thank you for keeping us updated. Love, Aunt Karena and Uncle John
You are in our daily prayers.
ReplyDeleteMy thoughts and prayers are with you and your family. Love you.
ReplyDeletePlease know our thoughts and prayers are with you and your beautiful family.
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