how it all started......

Hi. My name is Danielle. I lost my daughter Grace to HELLP syndrome at only 24 weeks 6 days. It was an "oops" pregnancy as I was on birth control when we conceived. I didn't even know about her until 14 weeks! At 23 weeks I developed epigastric pain and talked to my Ob/Gyn via phone about it. They told me to take Zantac and if the pain continued, call them. I didn't and now wish I had. The pain lessened that night, but continued off and on for a few more days. I had a regularly scheduled appt with them on Monday, so I waited it out. When I went in, the proteins in my urine were 3+ and I had gained 13lbs. in that month! They sent me to the hospital for "more testing". My blood pressure measured 221/113, to which the nurse said "That can't be right. You wouldn't be with us if it was." Big mistake on her part b/c the next measure was just as high. And continued to be high for the next hour. The US measured the baby at about 1 lb, but she was in there and kicking all around. Her heartbeat was strong also. The Ob/Gyn there told me that pending the results of the bloodwork we might be delivering that night. Of course, when the bloodwork came back, my platelets were okay, but he said my liver and kidneys were starting to shut down and we would be delivering within the hour. I have never been so scared in my life. As the NICU doctors talked about what measures we wanted to take with Gracie, I had a feeling of dread come over me and I panicked. I wanted to do the birth naturally, even hating the idea of an epidural. I an a Type A personality and hate losing control. I asked for more time, but my doctor (God Bless him!) did not want to risk losing me or the baby. The C-section went very well. Gracie came out kicking and screaming...literally. The NICU doctors took her immediately, she weighed 14 oz. They sewed me up and the put me on magnesium for the next 24 hours. I got to see Gracie in the NICU, she was hooked up to so many wires, but she gripped onto my finger as tight as she could. Her eyes were still not open, and her tiny chest looked like it was working hard to take in oxygen. They warned me it would be touch and go.

The next afternoon, the doctors came in (while I'm still on that crappy magnesium!) to tell me that Gracie's esophagus wasn't allowing a tube through to her stomach. They thought it might not be developed all the way down or maybe there was a tear in it. So they were transferring her to duPont Hospital for Children. They have NICU surgeons there that could repair whatever was wrong and could be assess the situation. They brought her in my room in the transport unit to say goodbye. It broke my heart as she waved her little hand at me goodbye. I know she knew I was there.

We kept in touch with the doctors at duPont via telephone. And my sister, who’s a nurse, and my mom stayed in Gracie’s room with her there. They were my eyes and ears while I was recovering in NJ.

Thursday morning, about 2am, we got a phone call from the doctors at duPont stating that they weren’t very hopeful about Grace’s progress. She wasn’t doing well – her lungs weren’t getting oxygen to her blood and her oxygen saturation levels were very low. It was heartbreaking. Then at 7am they called again and said that she was maxed out on meds and there was very little else they could do. They said that I should come to the hospital to see my daughter. We rushed through my discharge and drove to Delaware. We got to see her and touch her. My mom and sister, as well as Matt’s parents came down also. Gracie wasn’t moving at all, due to the medications that were sedating her and keeping her out of pain. The doctor and social worker came in to talk to us. It wasn’t hopeful at all. Basically we could leave her on the support system until her little body gave out. Or we could take her off of it. We decided that she was suffering and we would like them to disconnect everything. We left while they did that. Although it was only about 15 minutes, it seemed like an eternity. I know that she was in pain and it made me feel better to know that she wasn’t anymore. We went back into her room to see her and hold her, but as soon as I saw her little body laying there lifeless I had to turn around and leave. It’s just not natural to see such a small baby dead. My mom and Matt’s mom held her and said goodbye to her while Matt and I waited in a nearby room. I couldn’t bear to hold her little body.

To Be Continued.......