She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. She's here. SHES HERE!!!!!!!!!!!!!!!!!!!!!!!
She's the coolest, toughest, cutest, MOST AMAZING BABY EVER!!!!!!!!!!!!!!!!!!!
What. A. Whirlwind.
It has literally been a crazy long checklist. We have had to go head to toe staring at the brain and check off all organs to ensure that they are working.
Brain: three days post op her brain ultrasound showed no signs of hydrocephalus- PRAISE JESUS. 8 days after birth her head circumference is totally normal- thank you God.
Lungs: we were told she wouldn’t cry when she was taken out bc she would likely need a little
assistance. She cried. After her surgery we were told she would have a breathing tube. No tube.
Heart: probably the scariest part and it wasn’t even anything on the radar. With her myelomeningocele, it was a very time sensitive thing. The spine has to be closed within the first 72 hours of being born... infection to this area is terrifying as it goes straight to the spinal cord and then the brain. When she was born her lesion was bleeding... this made the surgery even more time sensitive. Around hour 50 we were told that she needed an EKG before she could be cleared for surgery. On the EKG they saw that her PFD was still open and that she was at very high risk of developing a coarctation- google it, you will be scared sh **less. They were worried to put her under and while she was asleep suddenly her heart stops. What to do!? Thank Jesus she was cleared and surgery happened. Her heart was still closely monitored the whole NICU stay with echo and a repeat ekg was ordered to be cleared for discharge.
Kidneys: she has had a dilated left kidney since she was 20 weeks in utero. They decided it was grade 2 hydronephrosis meaning her kidney for whatever reason isn’t emptying on the left side. We were told it was likely bc her bladder wasn’t emptying- a common side effect of Spina Bifida babies. .
On to the bladder: they cath all Spina Bifida babies anticipating that they won’t have bladder function. They space it out from 4 hours then up to 6, ,8, 12 and finally if baby is doing well they will send them home catheter free. Dahlias bladder has been great! We are cath free and so happy.
Legs: Dahlias lesion was at L4/L5... we knew the nerves to her ankles were very damaged. Her feet were clubbed in utero which told us a lot of damage had already occurred but having the lesion that low was a wonderful thing! For a scary situation the location kept us super optimistic. At 48 hours old we sent our baby off to have spine surgery. Holy Sh**. At the time it was just what had to be done... now I realie that God has been guarding not only my heart but my MIND. Now that it’s over, it’s pretty intensely emotional. After surgery Dr. Naftel told us that the lesion was actually higher than anticipated. This meant more damage. He told us that our baby would likely never bend or extend her knees. This meant she wouldn’t walk. We grieved. We grieved so hard and so much more. And then we pulled up our big girl/boy pants and moved on. We discussed the love we have for her. We picked out every positive and forgot the negatives, we accepted our new normal. The next day I was in the NICU when I swore I saw her leg move. I didn’t want to be the crazy person yelling it... I was thinking maybe that’s wishful thinking? I am sleep deprived and emotionally drained. But i started rubbing her little foot when I felt her push against my hand. I was still nervous to say anything... I knew the “poor her” look I would likely get from the nurses. Then Kelley, our NICU nurse came in to do a dressing change and said “her knee just moved. It was not her hip, I swear she moved her knee”. I shared with her what I saw and we both quietly celebrated together. It was like a secret friendship and understanding, I will always be thankful for that moment. I told Adam what happened and had him pay close attention too. The next day girlfriend is bending both knees totally for all to see! PT came and said she even had ankle movement. This child.
When she was conceived we knew she was a miracle. We knew Hod gave her to us very thoughtfully and lovingly and that there was a big meaning to her. Dahlia is our flower child name and Dollie means “a gift from God” because this baby is our special gift.
Things I’ve learned:
God always keeps His promises.
Prayer is so powerful.
Nothing is a coincidence.
Living the NICU life is no joke.
Never get married to an idea or thought during a crazy medical experience.
Your nurses are angels.
Dahlia Mae Harmon is a BAD ASS.
Hope for the best, prepare for the worst.
No story is over.
Love your loved ones hard.
Lean in and let people help you. 💕
Thank you for your on going love and support!!! Tomorrow we head back to Vanderbilt for her first Spina Bifida clinic. Pray that our tests are positive and that casting her legs goes well... this is one nervous Mama.
She's the coolest, toughest, cutest, MOST AMAZING BABY EVER!!!!!!!!!!!!!!!!!!!
What. A. Whirlwind.
It has literally been a crazy long checklist. We have had to go head to toe staring at the brain and check off all organs to ensure that they are working.
Brain: three days post op her brain ultrasound showed no signs of hydrocephalus- PRAISE JESUS. 8 days after birth her head circumference is totally normal- thank you God.
Lungs: we were told she wouldn’t cry when she was taken out bc she would likely need a little
assistance. She cried. After her surgery we were told she would have a breathing tube. No tube.
Heart: probably the scariest part and it wasn’t even anything on the radar. With her myelomeningocele, it was a very time sensitive thing. The spine has to be closed within the first 72 hours of being born... infection to this area is terrifying as it goes straight to the spinal cord and then the brain. When she was born her lesion was bleeding... this made the surgery even more time sensitive. Around hour 50 we were told that she needed an EKG before she could be cleared for surgery. On the EKG they saw that her PFD was still open and that she was at very high risk of developing a coarctation- google it, you will be scared sh **less. They were worried to put her under and while she was asleep suddenly her heart stops. What to do!? Thank Jesus she was cleared and surgery happened. Her heart was still closely monitored the whole NICU stay with echo and a repeat ekg was ordered to be cleared for discharge.
Kidneys: she has had a dilated left kidney since she was 20 weeks in utero. They decided it was grade 2 hydronephrosis meaning her kidney for whatever reason isn’t emptying on the left side. We were told it was likely bc her bladder wasn’t emptying- a common side effect of Spina Bifida babies. .
On to the bladder: they cath all Spina Bifida babies anticipating that they won’t have bladder function. They space it out from 4 hours then up to 6, ,8, 12 and finally if baby is doing well they will send them home catheter free. Dahlias bladder has been great! We are cath free and so happy.
Legs: Dahlias lesion was at L4/L5... we knew the nerves to her ankles were very damaged. Her feet were clubbed in utero which told us a lot of damage had already occurred but having the lesion that low was a wonderful thing! For a scary situation the location kept us super optimistic. At 48 hours old we sent our baby off to have spine surgery. Holy Sh**. At the time it was just what had to be done... now I realie that God has been guarding not only my heart but my MIND. Now that it’s over, it’s pretty intensely emotional. After surgery Dr. Naftel told us that the lesion was actually higher than anticipated. This meant more damage. He told us that our baby would likely never bend or extend her knees. This meant she wouldn’t walk. We grieved. We grieved so hard and so much more. And then we pulled up our big girl/boy pants and moved on. We discussed the love we have for her. We picked out every positive and forgot the negatives, we accepted our new normal. The next day I was in the NICU when I swore I saw her leg move. I didn’t want to be the crazy person yelling it... I was thinking maybe that’s wishful thinking? I am sleep deprived and emotionally drained. But i started rubbing her little foot when I felt her push against my hand. I was still nervous to say anything... I knew the “poor her” look I would likely get from the nurses. Then Kelley, our NICU nurse came in to do a dressing change and said “her knee just moved. It was not her hip, I swear she moved her knee”. I shared with her what I saw and we both quietly celebrated together. It was like a secret friendship and understanding, I will always be thankful for that moment. I told Adam what happened and had him pay close attention too. The next day girlfriend is bending both knees totally for all to see! PT came and said she even had ankle movement. This child.
When she was conceived we knew she was a miracle. We knew Hod gave her to us very thoughtfully and lovingly and that there was a big meaning to her. Dahlia is our flower child name and Dollie means “a gift from God” because this baby is our special gift.
Things I’ve learned:
God always keeps His promises.
Prayer is so powerful.
Nothing is a coincidence.
Living the NICU life is no joke.
Never get married to an idea or thought during a crazy medical experience.
Your nurses are angels.
Dahlia Mae Harmon is a BAD ASS.
Hope for the best, prepare for the worst.
No story is over.
Love your loved ones hard.
Lean in and let people help you. 💕
Thank you for your on going love and support!!! Tomorrow we head back to Vanderbilt for her first Spina Bifida clinic. Pray that our tests are positive and that casting her legs goes well... this is one nervous Mama.
Thank you, Emily, for this delightful and informative update. Sid and I read it with pleasure.
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