Fetal Hydrops.
A near fatal diagnosis and words that have caused our lives to turn upside down.
Family, friends and others closest to me knew that early on in my pregnancy, we were given news that was troubling to hear. They laid out all the possibilities and outcomes for our child but still couldn’t give a definitive answer (prognosis). I understood that. It wasn’t easy to swallow, though, and it robbed Jesse and me from early on of the typical excited anticipation you feel for your first child. But even knowing that was the case, we stayed optimistic and found so much hope for her in each other. As time passed and at each appointment things seemed to change and even improve, our hope grew stronger as we got to see more of how she looked, all her movements (she was quite the wiggle butt) and of course her signature pose: she’d ball up her little hand into a fist and set it up to her chin.
My appointment in August had seemed the greatest turn around. We found out the fluid behind her neck had gone away, no hydrops observed, and her heart looked just on track! Everything we wanted to hear. I didn’t think about my body slowly showing signs that something wasn’t right.
September’s appointment came and went with so much confusion. I’m still in a fog about many of the details, but I had extra fluid building up (throughout my body), and so did Nora. It’s one of the appointments most blurred for me, even making the appointment for two weeks later to recheck our fluids.
That brings us to September 21st until now. I was admitted to the hospital due to all the excess amniotic fluid in my uterus which was causing a lot of stress on my heart and lungs. Over my week-long stay, a procedure was done to drain a large portion of the excess amniotic fluid, and it was successful. We were soooo thrilled with that win, thinking we had way more time for Nora to develop and get even stronger so she could have an easier time outside my womb to battle her health issues. We were doing well enough that I was sent home on restrictions but a follow up appointment just a few days later led to more going on, so I was quickly put as an outpatient and would have 3-4 appointments weekly going forward, for checkups.
October 4th was the first of those many outpatient checkups scheduled - but I was instead admitted as an inpatient again. When on a monitor at the office, her heart rate was pretty stable with some dips. The doctor didn’t like this and thought it could be distress so he wanted us to be monitored for a few hours inpatient - which turned into my next 5 day stay. Overnight, the observation resulted in an emergency C section at 27 weeks and 2 days of gestation.
Nora Jean was born on October 5th at 4 lbs. 13 oz, 13” long, and our little warrior princess put up the best and strongest fight. But on Friday afternoon, October 8th, Jesse and I had to make the hardest decision to take her out of the incubator, so she could pass while being held within the comfort of our arms, and not alone in an incubator. She fought for her life for just over 72 hours. I just wanna go back to holding her and never stop. I want to keep rubbing her head and hair. I want to keep smelling her. Daddy wants to be back at her crib-side, holding her tiny hands.
I don’t know how to get through this, and I know we never fully will. Our families will never be the same, but we’re there for each other. Jesse has been my rock and has kept me from falling too far into my anguish and grief. We feel so robbed. We’re going to have days we’re angry, but for right now, we’re trying to focus on how peaceful she was and keep that in our hearts. We have a daughter now, even though she won’t be with us and you won’t get to meet her. She’ll be at rest and watching over us.
Our sweet, sweet Nora Jean.
I wanted to share this because the world does not stop revolving though our lives have come to a halt. Jesse and I just must find a way to jump back on - eventually. I’m going to have a really hard time doing that, but I know a lot of people on here care about us and will make transition back into everything more bearable.
Rest In Peace, our beautiful baby girl.
"My love, my light, my beautiful daughter.
Nora Jean, we both tried so hard to keep you . . . unfortunately we just ran out of time.
I feel so empty without you.
I wanna hold you every minute right now but I know you’re in the best hands possible. . . "
A near fatal diagnosis and words that have caused our lives to turn upside down.
Family, friends and others closest to me knew that early on in my pregnancy, we were given news that was troubling to hear. They laid out all the possibilities and outcomes for our child but still couldn’t give a definitive answer (prognosis). I understood that. It wasn’t easy to swallow, though, and it robbed Jesse and me from early on of the typical excited anticipation you feel for your first child. But even knowing that was the case, we stayed optimistic and found so much hope for her in each other. As time passed and at each appointment things seemed to change and even improve, our hope grew stronger as we got to see more of how she looked, all her movements (she was quite the wiggle butt) and of course her signature pose: she’d ball up her little hand into a fist and set it up to her chin.
My appointment in August had seemed the greatest turn around. We found out the fluid behind her neck had gone away, no hydrops observed, and her heart looked just on track! Everything we wanted to hear. I didn’t think about my body slowly showing signs that something wasn’t right.
September’s appointment came and went with so much confusion. I’m still in a fog about many of the details, but I had extra fluid building up (throughout my body), and so did Nora. It’s one of the appointments most blurred for me, even making the appointment for two weeks later to recheck our fluids.
That brings us to September 21st until now. I was admitted to the hospital due to all the excess amniotic fluid in my uterus which was causing a lot of stress on my heart and lungs. Over my week-long stay, a procedure was done to drain a large portion of the excess amniotic fluid, and it was successful. We were soooo thrilled with that win, thinking we had way more time for Nora to develop and get even stronger so she could have an easier time outside my womb to battle her health issues. We were doing well enough that I was sent home on restrictions but a follow up appointment just a few days later led to more going on, so I was quickly put as an outpatient and would have 3-4 appointments weekly going forward, for checkups.
October 4th was the first of those many outpatient checkups scheduled - but I was instead admitted as an inpatient again. When on a monitor at the office, her heart rate was pretty stable with some dips. The doctor didn’t like this and thought it could be distress so he wanted us to be monitored for a few hours inpatient - which turned into my next 5 day stay. Overnight, the observation resulted in an emergency C section at 27 weeks and 2 days of gestation.
Nora Jean was born on October 5th at 4 lbs. 13 oz, 13” long, and our little warrior princess put up the best and strongest fight. But on Friday afternoon, October 8th, Jesse and I had to make the hardest decision to take her out of the incubator, so she could pass while being held within the comfort of our arms, and not alone in an incubator. She fought for her life for just over 72 hours. I just wanna go back to holding her and never stop. I want to keep rubbing her head and hair. I want to keep smelling her. Daddy wants to be back at her crib-side, holding her tiny hands.
I don’t know how to get through this, and I know we never fully will. Our families will never be the same, but we’re there for each other. Jesse has been my rock and has kept me from falling too far into my anguish and grief. We feel so robbed. We’re going to have days we’re angry, but for right now, we’re trying to focus on how peaceful she was and keep that in our hearts. We have a daughter now, even though she won’t be with us and you won’t get to meet her. She’ll be at rest and watching over us.
Our sweet, sweet Nora Jean.
I wanted to share this because the world does not stop revolving though our lives have come to a halt. Jesse and I just must find a way to jump back on - eventually. I’m going to have a really hard time doing that, but I know a lot of people on here care about us and will make transition back into everything more bearable.
Rest In Peace, our beautiful baby girl.
"My love, my light, my beautiful daughter.
Nora Jean, we both tried so hard to keep you . . . unfortunately we just ran out of time.
I feel so empty without you.
I wanna hold you every minute right now but I know you’re in the best hands possible. . . "