Post by sweetcali on Dec 6, 2015 15:09:04 GMT -5
I forgot that I posted before L was born when I knew she'd be early. Our story is below. This was also posted in Current NICU Mommas
Little miss L was born via emergency cs at 30+3 due to my severe pre-e. She was intubated on day 1 and put on the high frequency jet ventilator. I held her for the first time at 2.5 weeks due to her not having ever pooped and the concern that she was not going to make it if something didn't happen soon. She pooped while on my chest. A week later, with no other options she was given steroids. Drs were unable to wean her jet settings but eventually said "let's just take her off and see what happens, we are out of options". They did and L shocked the hell out of us all. She went from jet to conventional to cpap to high flow in 3 days. **Prenatally she was diagnosed with a ccam because she had mediastinal shift of the heart to the right. It could not be confirmed until she was off the jet. She went for a CT scan that showed no ccam but that she has Scimitar Syndrome. Her pulmonary vein connects to the IVC instead of the heart and her pulmonary artery is small.**
After getting to 2L on high flow everything stalled. We tried BF and bottling for 4 weeks with not a smudge of progress. One weekend she was inconsolable and was working harder to breathe. She had a kidney stone. After demanding an US, X-ray, and echo, we found she had pulmonary hypertension and calcium buildup in her kidneys from the Lasix. She was transferred to a higher level NICU where she had a cardiac catheterization and perfusion scan that showed basically no function in her right lung. She was given meds and put on RAM cannula. We were just transferred back to our first NICU and are being transferred to a NICU closer to home for her to grow. I'm pushing for additional steroid treatment for the inflammation from her CLD. I'm ready to just take all the equipment home with me. It's anticipated that she needs another 1 to 2 months in the nicu.
**added info
Little miss L was born via emergency cs at 30+3 due to my severe pre-e. She was intubated on day 1 and put on the high frequency jet ventilator. I held her for the first time at 2.5 weeks due to her not having ever pooped and the concern that she was not going to make it if something didn't happen soon. She pooped while on my chest. A week later, with no other options she was given steroids. Drs were unable to wean her jet settings but eventually said "let's just take her off and see what happens, we are out of options". They did and L shocked the hell out of us all. She went from jet to conventional to cpap to high flow in 3 days. **Prenatally she was diagnosed with a ccam because she had mediastinal shift of the heart to the right. It could not be confirmed until she was off the jet. She went for a CT scan that showed no ccam but that she has Scimitar Syndrome. Her pulmonary vein connects to the IVC instead of the heart and her pulmonary artery is small.**
After getting to 2L on high flow everything stalled. We tried BF and bottling for 4 weeks with not a smudge of progress. One weekend she was inconsolable and was working harder to breathe. She had a kidney stone. After demanding an US, X-ray, and echo, we found she had pulmonary hypertension and calcium buildup in her kidneys from the Lasix. She was transferred to a higher level NICU where she had a cardiac catheterization and perfusion scan that showed basically no function in her right lung. She was given meds and put on RAM cannula. We were just transferred back to our first NICU and are being transferred to a NICU closer to home for her to grow. I'm pushing for additional steroid treatment for the inflammation from her CLD. I'm ready to just take all the equipment home with me. It's anticipated that she needs another 1 to 2 months in the nicu.
**added info
