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Dianne Ey Mani

Haydn Daniel

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Our little Haydn was born on May 6, 2016. His due date was July 28, 2016, but he decided he wanted to make his appearance early. I was admitted to the hospital on April 30th bc of pPROM and put on hosptial bedrest. We had hoped I would stay pregnant until 35 weeks, but Haydn only waited until 29 weeks and 1 day.

The night I went into labor was an emotional one. I felt scared and guilty that it was happening so early. I was excited to meet our little one, but it also came with fears about his prematurity. The second I delivered at 10:30am, I heard Haydn's cry. He was quickly taken by the NICU team for an external assessment and they told me he looked great and he was breathing on his own. They took him back to the NICU for a full assessment and two hours later the neonatal doctor and pediatric surgeon delievered the unexpected news that Haydn had a left side CDH. As they explained to me and Tony what that was, my heart sank and everything felt surreal. They explained that my young baby would need surgery, but they wanted to wait a couple of days to see if he can strengthen himself and also stablize. We were told that his survival rate was 30% and bc he was so young, he didn't even qualify for ECMO if he needed it. Being told that surgery was his only hope for survival, but that he may not even make it to, through or after surgery was the hardest concept to grasp. They told us it was all up to him...

Haydn remained on a C-Pap from birth until 10pm that night. He was intubated bc he was having trouble with his CO2 exchange and then switched to an oscillator for 4 days. They approved his surgery after his head ultrasound came back clear and surgery happened on his 6 day of life. Two and a half hours of surgery...he made it! The surgeon told us his intestines and colon were in his left lung and he had developed 2/3 of his left lung. He was heavily sedated with morphine and ativan for two weeks following surgery. He had severe edema all over his body as expected, but he remained stable. On the 3rd week of his life, the docs and surgeons began weaning him off sedatives to wake him up bc his vitals and xrays were showing progress.

Intitially we were told Haydn would be intubated for a long time and feedings wouldn't happen for even longer than that. The 3rd week was a big one for him. He was able to be extubated AND he started feedings through the feeding tube! On that same day, we held Hadyn for the very first time! The feeling was indescribable! Since then, Hadyn has been tolerating being extubated and he is on the canulla for breathing support. His oxygen numbers still flucuate, but they haven't been too concerning. The scarest thing that he is doing right now are the apnea episodes where his heart rate suddenly drops and his breathing also stops briefly. We are told this is a "normal premmie" thing, but nothing is "normal" to me, a parent that has never experienced any of this!

Overall, Hadyn has been beating all the odds against him and moving past the goals set for him faster than expected. We continue to pray for his continued progress and we are cautiously optomistic. We believe in you Haydn!
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