18-12-14(5:02:03)

May 7th, 2016 by Mandy

This is the story of my miracle, Sadie. Sadie is a twin, and they are 27 weekers. They were born healthy, needing no resuscitation or even help breathing. Things were going great, and we felt that our girls were coming home before expected. Then, at 4am when they were 15 days old, we got the phone call every parent dreads. Our Sadie was sick. She was throwing up her feeds and desatting, and she was going back to NICU. They would be in touch. All I could do was cry. At 6am, they called to say she’d been intubated, at 10 they called to say she was being transferred to Children’s Hospital for surgical evaluation and she had NEC. It was explained that she was very sick and there was a chance we’d lose her. We started making plans to get our 4 oldest kids somewhere else since we have no family where we live and the hospital is 2 hours away. At 1 they called and said we needed to come now, they were afraid she would die before we could make the trip. My life was crumbling.

I’ll never forget seeing her. Her tiny body was purple and swollen all over, the oscillator was causing her whole body to shake. She looked lifeless. Her heart rate was over 200, blood pressure was barely sustaining life, and she was satting in the 60s. They told us there was one more drug they could try if her BP dropped any lower, but it was a code drug. We told them to try it. They told us even with that she was not likely to survive and we should consider removing life support and should prepare to say goodbye. I stood at her bedside and told her how sorry I was. I didn’t want her to hurt. They promised she was not, that they’d give her more meds if they thought she was in pain. I’d never felt more helpless. They ended up starting the Epinephrine, and slowly but surely she stabilized. She was still very critical, but she was critically stable.

Weeks went by and she went from the oscillator to regular vent to CPAP. Things were looking up, but they still felt confident she’d lost all her bowel. She had been unable to have surgery because she was too unstable. Then she seemed sick again… tests confirmed E Coli Meningitis. She had another huge obstacle, linked straight back to NEC. She was on more meds and intubated again. Again, she fought through it, but was left with devastating brain damage.

Fast forward to now, Sadie is 8 months old, and has endured 11 surgeries, abdominal and neurological. She came home a week before they turned 7 months old. She’s got just 28cm of bowel left. No colon. She has a jejunostomy that they hope to eventually be able to take down. She’s got a G tube but only gets 2cc/hr continuously. We hope to increase feeds over time. She’s also got a central line and gets 24hr TPN and lipids overnight. Due to the brain injuries she’s delayed significantly and makes no noises. But, she’s beginning to make small sounds and show emotions. She’s surpassed expectations her whole life. She does not have a CP diagnosis and they have hopes for slow progression through therapy. She’s a happy little girl and there’s definitely a lot going on in there. The baby everyone gave up on is proving them wrong. She’s my world and I have learned more from her in 8 months than anyone else in my life. She’s so strong and I’m so proud of her. There is hope for miracles, mommies and daddies, don’t lose hope!

One response to “18-12-14(5:02:03)”

  1. Jimbo says:

    As with a lot of things related to our faith, the joy and the victory is in the &#;2808processࢭ as well as in the conclusion! Taking the time and having to THINK, as your comments indicate you have, is where a lot of the reward is derived … and of course then, the application or follow-through with the prioritizing you’ve done! Thanks!

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