Erin's head progress

I took a break from the story to show you her progress with her head. I'm pretty amazed!

This picture is from November

Each month it seemed to take a different course...

These are called granulation tissue, they look a lot but blisters but they are not.

Anytime anything touched her head it would bleed. At one point every time she cried her head would bleed.

More granulation tissue

This is her head now! Just in a little over two months!

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.

Heartbroken

Why me? How did this happen? I did everything "right". I graduated from college. I got married. We tried for two years to have a baby. We planned. We wanted a baby. I lost 30 pounds before the pregnancy so that if I were to get pregnant the baby would be healthy. I did not drink, smoke or do any drugs. I wouldn't even take a simple pain killer if I needed one. I didn't drink coffee, or pop during the pregnancy. I stayed active. I worked up until they admitted me to the hospital. I ate really healthy because I wanted her to be healthy. I didn't want ANYTHING to go wrong. Go figure.

I was so angry. Angry at God for letting this happen, angry that my friends were having perfect babies, angry that I was the only one in my family to have a baby like this, and especially angry at myself. I kept thinking to myself, "Well Shannon, congratulations, you wanted a baby so bad and look now she's suffering because of you!" I hated myself. I thought that I would never forgive myself. Maybe if I never wanted a baby so bad. Maybe she wouldn't have to suffer.

I had heard about other sick babies before I had Erin and always thought, "I'm sorry that happened, but I'm glad it's not me!" I never would have imagined that this would happen. Sadly, this could happen to anyone. Healthy or not. It doesn't have to run in your family, it didn't run in ours.

Shortly after I was informed that they thought they knew what the diagnosis was, but would not tell us until it was confirmed. They did give us a "heads up" that she does not and will never have hair, eyelashes or eyebrows. Her fingernails are dystrophic, and her skin may or may not heal, but most likely her skin particularly on her head will always have continued erosions. They said they think that a piece of her DNA was mutated.

I was finally released from the hospital and went immediately to meet my daughter. When we arrived I was heartbroken. Seeing her in a humidified box, to weak to move or cry. All I wanted to do was hold and kiss her and comfort her. I could not touch her, no one was aloud to. My own daughter, who lived and grew inside me, who was part of me for so long....I couldn't touch. At the same time even if I was allowed to, it scared me to think that it would cause her more pain. Her skin was raw, bleeding and oozing. Her head, parts of her face, her neck, arms, legs, chest, entire back and bottom. The only part of her that body that wasn't eroded was her stomach. Her eye was swollen from the surgery they did to cut her eyelid back open. I kept thinking, "How did this happen? What did I do wrong?"

Everything that had happened to me didn't compare. All the scrapes, sunburns, bruises, surgeries. All the pain I had ever felt in my life could not touch the pain she was in. She, only 4 pounds 12.5 ounces, was barely surviving.

Creepy Blue Bird Man and a Magical Hedgehog

The next few hours were a blur. Not only was I on morphine, seeing a creepy blue bird man standing at the end of my bed and a magical hedgehog guarding the bathroom door, but I was in shock. No one knew what was going on. I do remember the doctor coming in to tell me that their facility is not equip to meet her needs and that they would have to transport her to another hospital. That meant that I would not be able to see my newborn daughter for another 3 to 4 days. What choice did I have? I had to let them take her. The first time I saw my daughter she was being wheeled away in a box by three paramedics. I couldn't sit myself up so all I could see was her little hand.

I felt like I had given her up for adoption or that she had died. I went through 9 months of pregnancy and a major surgery and didn't have the blessing that came with it. At least not in my arms.

I had to view her through pictures that were brought to me. I hate to admit this, but I was devastated. I was scared and yet thought she was the most beautiful thing that I had ever seen. I didn't want to show anyone pictures or post any on Facebook, for the fear that everyone would judge her or compare her to the healthy, beautiful babies that my friends were having. I still have that fear.

My older sister, Brynn had come from South Carolina to meet Erin and help us before my Mom was able to come down. Brynn sang to Erin for me and called me to talk to Erin over speakerphone.

It all hit me two days later. I was laying in the hospital. No one in the room but me, complete silence. Everyone had gone to visit the baby. I sat alone with my thoughts. I then realized that I was not waking up from this nightmare. I didn't even really know what was going on. I was given so much information I thought my head would explode. I called my Mom on the phone. I don't remember all that was said, but I cried. I couldn't stop crying. I do remember telling her about when I was in middle school, during the summer, there was a boy whose skin was disfigured. It didn't bother me so much but I watched the other kids torment him. No one would be his friend, they all acted like he was diseased. It hurt my heart now more than ever. I wanted to throw up thinking that this might happen to Erin.

They ruled out port wine stains and also epidermolysis bullosa. They told me they had to do a DNA test on Erin. We had to give a complete medical history on our entire family, and they kept asking us if we were related. I guess that's common down south.

On the third day they called us to tell us that her eye surgery went well. "Eye surgery?" I thought, "What eye surgery, I didn't even know she needed an eye surgery!" They must have told me sometime either while I was hallucinating or with all the information that was piled into my brain. Either way I was relieved that it went well. It turns out that part of her syndrome, which at the time was undetermined, included what is called an ankyloblepharon. Basically the inside corner of her eyelids were fused together so that her left eye would not open all of the way.

Warren, Brynn and I were all in my hospital room that afternoon, when we heard a knock at the door. Brynn answered the door. Before she could close the door (so I couldn't hear) I heard the lady say, "I'm here to take pictures of the baby." I know it may not seem like a big deal but you have to remember my emotions were running high. I started crying again. Pictures. Erin never got pictures. All those small things that I wanted, her first hospital picture, her first outfit, the family photo. It never happened the way it was "suppose" to. That's when the anger started.

The Operating Room

"In fifteen minutes, you will get to see your baby!" The nurse proclaimed. I was so excited and very nervous. After 37 weeks, 4 spinals and an epidural I was ready to see and hold my baby.

At 32 weeks they determined through ultrasound that Erin was breech. She could not flip because my amniotic fluid level was extremely low. After being on an IV for 5 days, they figured that my placenta was overworked and was giving up. I was disappointed that I was going to have a c-section. I wanted everything to be "normal". I wanted to go into labor, I wanted Warren to drive me to the hospital in a panic, and yes, I even wanted to go through the entire painful experience. Little did I know, that having a c-section was the least of my problems.

The nurse informed us, "We're going to take you and your husband back to the Operating Room. We are going to deliver your baby, clean her up a little, wrap her in a blanket and hand her to you. Then we will take her and your husband back to the nursery so that the pediatrician can exam her." Unfortunately those plans had failed as well. This is the actual, not sugar coated, story of Erin Rose.

The first four spinals had failed, so they gave me an epidural thankfully, so I could not feel anything but them moving my belly around. All the sudden I hear her. The sweetest cry in the World. I couldn't help but to cry at the sound. I was speechless. So were the doctors. All the sudden someone says, "Oh my gosh! Oh my gosh!" in a panicked voice. Then all the sudden the pediatrician and 5 or 6 nurses run into the operating room. I responded, "What is going on, is everything ok?" and Warren says, "I thought the pediatrician was suppose to meet us in the nursery" One of the nurses appears from around the sheet. She says, "Her skin is" she pauses trying to come up with the words to tell us, "Not the color it needs to be." So my first thought is jaundice. "Ok, jaundice" I think to myself, "That's not horrible I guess, Warren and I had jaundice, and so did my brother and sisters." Then the nurse tells us that we need to call both of our parents right away and ask them if port wine stains run in either of our families. So Warren pulls out his cell phone and immediately dials his mother and mine. Since everyone is in a panic he's trying to hurry the conversations. Accidentally, not informing our mothers that, yes, the baby is born.

Warren informs the nurse that no one in either family has port wine stains. At that moment I hear the peditrician and nurses say to eachother, "70 percent of her skin is affected", "It can't be port wine stains, her skin is falling off." They take her out of the operating room, Warren follows suit. All I could think of was, this is the part of the nightmare where I wake up......anytime now......