Aubrey

This is Aubrey Elizabeth. She was born on June 24th, 2008 and died on July 7th, 2008. She lived for 13 days. She was the first of the twins to be born and weighed one ounce more than her identical twin sister, Ellie.

Aubrey was much more active than Ellie, always moving and stretching. She often pulled at her tubes and lines as if she was telling us that she didn't like being hooked up to so many machines. When she was two days old I got to change her tiny little diaper. She wiggled and kicked the whole time. I remember thinking how feisty she seemed for being so small.

Aubrey was at risk for all the same problems as Ellie. Both girls had severely underdeveloped lungs and were at high risk for permanent lung damage. Both girls also had an extra valve still open in their hearts that would require surgery to close if it did not close on its own in the next few days. All babies have this extra valve, but it usually closes before a full term baby is born. This extra valve bypasses blood from the lungs since in the womb the mother breathes for the baby through the umbilical cord. But now out of the womb the open valve causes uneven blood pressure. Extremely high blood pressure goes to the brain and low blood pressure goes to the organs below the heart. This causes the girls to be extremely vulnerable to brain hemorrhaging which would cause irreversible brain damage and a high risk of organ injury and failure, especially to their intestines, due to lack of blood supply. Infection was a huge risk for them also and they were receiving blood transfusions to keep their white blood cell count up and antibiotics. They were on blood pressure and blood clotting medication, steroids to help mature their lungs, and pain medication to lesson their discomfort, among other things. We could only pray and hope that some how they would be spared from all the risks of premature birth and survive the next four months.

The doctors reminded us that premature babies do well for the first few days and then things often take a downward turn. Kirk and I were sitting in my hospital room alone on the afternoon of the third day when the Neonatalogist walked in with an intern and a social worker and said that she needed to talk to us. My heart sunk. She explained to us that during the night both girls had incurred bleeding in their brains. Aubrey received a grade four hemorrhage on one side of her brain, and although the bleed would most likely cause permanent impairment, it was still very possible for her to lead a full life if she survived without other problems or more bleeding in her brain. It is very common in these cases that the healthy side of the brain compensates for the injured side and she would be left only slightly impaired. She was facing mild cerebral palsy and possible difficulty learning to read or do math, but she would walk and talk and lead a high quality of life. Kirk and I were so hurt to hear of her brain damage but so relieved that it was mild and that her future was still bright if she survived.

For the next few days Aubrey seemed to stabilize a bit. She was still very sick and in no way out of the woods, but her days and nights were uneventful. She seemed to be hanging in there. Initially she had lost a lot of weight but over time the nurses were able to help her gain some of it back. The poor little girl looked so skinny though. And she had this mysterious blue finger on her right hand. It seemed to not be getting good blood supply but every once in a while it would pink up a bit. Aubrey had a way of always giving us hope. She seemed determined to pull through.

On the seventh day Kirk and I lost Ellie. After Ellie's passing we spent time with Aubrey. All of our hope and attention now rest with her. We just lost one but we still had the other and we desperately wanted her to live. While holding her hand and talking to her we noticed a discolored spot on her abdomen. We pointed it out to the nurse and she told us that it had been there for a while and that is was of concern. Originally it was Aubrey that they thought was in intestinal distress but before her test results were back Ellie perforated an intestine and became the more critical of the two. The Neonatalogis was still very concerned about Aubreys' intestines and was watching her very closely but was unable to determine exactly what the problem was. We left the hospital scared and uncertain.

That night, at 1:30am, Kirk's cell phone rang and woke us out of sleep. It was the Neonatalogist asking our permission to transfer Aubrey to Children's Hospital here in San Diego immediately. Her entire abdomen had turned bluish-gray and he felt she needed surgery and the only place it could be done was at Children's. We consented and she was immediately transferred. We wanted to give her every chance to survive. The next morning we went to see her at Children's. I remember being taken aback at how sick she looked. She was puffy and discolored and resting motionless except for the rise and fall of her chest. I felt so sad. The doctor explained to us that the transfer was very hard on her and she almost did not survive. She arrived too critical for surgery and they were attempting to stabilizer her. Besides, they still could not figure out what was really going on with her intestines and needed to run more tests. The doctor suspected that her intestines were dying and that she was in the throws of complete organ failure. Surgery would be ineffective if that was the case and she would not survive. They wanted to monitor her for the next 12 hours to see if there was any change but the outlook was grim. Her body was showing all the signs of shutting down. Kirk and I agreed to continue treatment and see if she showed any improvement over night. We would return in the morning to check on her.

That night Kirk and I prepared ourselves for the worst. We prayed for a miracle but could not bring ourselves to get our hopes up. We drove to Children's the next morning with heavy hearts. We had no idea what condition Aubrey would be in. To our surprise she did stabilize through the night. She no longer required blood pressure medication and her respirator was on the lowest settings. Her abdomen was still discolored, a sure sign of some kind of intestinal problem, but the exact diagnosis remained a mystery. For the time being she was hanging in there.

For the next three days she remained stable. My fear turned to hope as I allowed myself to believe that she was going to live. We were going to keep one after all. We continued to visit her daily. That Saturday when I went to see her I discovered she had opened her eyes. It was such a precious thing to see. I gazed into her eyes and talked to her. I burned the image of those tiny little eyes in my brain. They were smokey gray. The nurse said that Aubrey couldn't see anything except light and dark, but I knew that she could see me. I knew she knew her mom was there with her, looking at her sweetly, holding her hand gently, loving her unconditionally. It was a beautiful moment. I finally let myself feel my bond with her without fear nor reservation. She was my precious little baby girl. She was a part of me. And I desperately loved her. I left that day believing God was going to let us keep her.

On Monday morning Kirk and I received a phone call from Aubrey's Neonatalogist asking us to come in for a meeting. We knew it could not be good news. We speculated in the car ride there what terrible news awaited us as we tried to prepare ourselves for what we might hear. The doctor sat us down to tell us the worst news we could imagine. During the night Aubrey experience even more brain hemorrhaging. The good side of her brain had filled with blood and she also had blood in her brain stem. She had received the same devastating brain injury as Ellie. Now Aubrey was facing severe cerebral palsy and mental retardation. She would most likely never walk or talk and would require multiple surgeries to relieve the painful seizing in her muscles. And she would require a breathing tube to breath and a feeding tube to eat. The quality of her future had been severely compromised. The doctor recommended that we stop life support. The doctor made a comment that we were young and could have more children. I wanted to kick in that doctor's teeth. I didn't want other children. I wanted Aubrey. Kirk and I sat alone in the doctor's office to discuss our options. We were torn. We wanted to give her every chance to live but we did not know what kind of life she would have. Losing her seemed as painful as keeping her. We couldn't be selfish. We had to do what was best for her. We were being forced to make decisions no parent should ever have to make. It was agonizing.

We decided that the life she would live was no life at all. Existing on permanent life support was not really living. We set aside our desire to keep her and asked to have her removed from life support. We took her to a private room and took turns holding her. For the first hour she was very active. She opened her eyes again and looked around. She moved her arms and legs and wiggled in her blanket. I fleetingly hoped that she would miraculously keep breathing and live despite what the doctors thought. But as time went on she became more and more still. First she stopped moving. Then she closed her eyes. We could only see her chest rising and falling as she struggled to breath. She turned blue and felt cold. I would put her cheek against my cheek to try to warm her up. I kept her wrapped tightly in her blanket so that she would feel comfortable. We were with her for two hours. Then she went to heaven. We walked back to her bed and put her down. I asked to the doctor to be gentle with her and to keep her warm. I knew she was dead but I still worried about her and didn't want her to be cold. Then Kirk and I walked away.

We signed some papers and left the hospital. When we walked out into the daylight I felt like I traveled through a time portal or something. It was over. No more babies. No more doctors. No more hospitals. No more begging God for a miracle. It was all over. Our girls were gone. Both of them. Forever. As we drove away I felt completely empty. And I was hungry. I remember thinking how strange it was that I was hungry. Kirk and I stopped to get some dinner. I cried while I ate. I couldn't stop crying. I felt bad for our waitress. She brought us ice cream to help easy our pain. We never did tell her what we were crying about. Sometimes there are just no words.