Was it mistakes or was it intentional?

Little did we know that letting her get seizures was the first of many horrible mistakes Erin's old hospital made. I asked the doctor if giving her so much morphine would cause developmental delays, he took that as I don't want her to have any pain medication at all. So all pain management was discontinued without our consent or knowledge. They burned holes into the bottom of Erin's feet, which still have not healed. They were very discouraging to me about pumping saying things like "Is that all the milk you got?!" They did not inform us that Erin had a hole in her heart, and had no intention of checking it. She only saw the dermatologist ONCE! They put her on medication that later caused her to have kidney stones. We informed them that one of the many tubes leading to Erin's body was leaking into her isolette. They ignored us until two days later we followed the leaking tube to find out that it was her feeding tube. So for two days they had not been feeding her. We heard so many times "We know what we are doing, we've been doing this for 20 plus years" yet openly admitting that they had never seen anything like Erin before. They neglected her to the point of letting her cut herself on her IVs and letting her lay in her feces for 6 to 8 hours letting her open skin get infected. Also if you notice in the picture above her oxygen cannula are going into her mouth, not her nose where they should be. They were putting a topical ointment on her skin that was quickly breaking down her skin even more. We asked them to stop using it but they kept using it. They let her eyes dry out so bad that she developed corneal ulcers on the surface of her eye which would have caused her to lose her vision had we not made the decision to pack up and have her transferred to a much better hospital in Michigan. One of the nurses went into Erin's isolette and instead of carefully moving Erin to change her bedding, she ripped the blanket that held Erin out from under her causing major damage to her already raw skin, then took her by the ankles and flipped Erin again to her back. Erin was screaming in agony. The nurse then left the room to let me change Erin's diaper. She came back in to Erin still screaming in pain, gave her vitamins, took her out of the isolette and had me hold Erin. Because Erin was so upset she violently vomited all over herself, her blankets and me. The nurse shoved a bottle in Erin's mouth trying to "get her to learn" while Erin was still screaming and vomiting then informed the doctor that bottle feeding Erin is a lost cause. During all of this screaming Erin was gulping in air so the nurse started yelling at Erin "YOU NEED TO STOP ERIN!" We were not allowed to touch Erin to fix all these mistakes. I was appalled. How could they take an already awful situation and make it much worse? Honestly if Erin wasn't such a fighter I believe they would have killed her.

It was a tough decision to move away from Warren's family, Erin is Warren's parents first grandchild. Also moving away from other family and friends. Everyone had given us so much love and support but Erin's health was our top priority.

Surgery Day

Days went by and I still felt like it was all just a bad dream. At the same time I started having vivid nightmares. I couldn't sleep even for a nap without the nightmares. I remember one in particular. In the dream I was given an option. She could be healed but under one condition, I had to be burned to death, slowly. I did it. I remember thinking in the dream, "Well, she won't have a mother but at least she won't be in physical pain." I guess looking back it was my way of trying to grasp at any little control because my life in fact had begun to spin out of it.

Let's fast forward two weeks. She was only 19 days old, not even five pounds yet. Her heart rate spiked up to over 240 bpm. It stayed there for several days. Meanwhile her oxygen percent was below 75 even when she was on the respirator. On December 12th, ironically her due date, a phone call woke us both up. "Over the night your daughter was having multiple seizures. We don't know if she has any brain damage, but we need your consent to test for meningitis."

After the phone call ended I could barely breath. It felt like part of me had died. I tried to keep from throwing up, and I don't think that I have ever cried so hard in my life. I kept telling myself to wake up. Please wake up. Deep down knowing that this was real.

We rushed over to the hospital and on the way received another call from the hospital, informing us that thankfully she does not have meningitis but she is severely dehydrated, among other things. They had to do surgery to put an IV into her heart.

I remember walking into her room. Her sedated little body was a hard sight to behold. They brought us into another room to sit quietly while they attempt surgery. Several hours later, the doctor comes in to tell us that the surgery was unsuccessful. They needed to transfer her to another hospital to attempt a second surgery.

It felt as though my heart was being crushed. I couldn't breathe in deeply. I felt so helpless.