babypage3

When Blake was 7 days old, the periods of apnea he was having became more frequent despite the theophylline; the oxygen level in his blood (sats) would get lower. He was moved back to the NICU later that night where he could receive oxygen under the oxyhood (the oxyhood was difficult to control in the isolette he was in). Blake had to have an IV restarted to give him a stronger medication to help control the apnea.

July 7, 2002: Blake was 11 days old. Blake's sats were still dropping frequently so the pediatric cardiologist that had seen him the day after his birth came in and did another echocardiogram. It did not look good. When Mike and I arrived at the NICU to see Blake, his nurse told us that Dr. I and Dr. D wanted to speak with us. We were told that Blake's pulmonary arteries were very narrow for a baby his size and age and there were other problems within his heart that were not allowing for proper blood flow to his lungs-the rest of his body couldn't get much needed oxygen. We were informed that the heart defects he had were consistent with Tetralogy of Fallot. Blake needed urgent open heart surgery so a shunt could be placed where his lungs could get the blood flow that was needed so his body could get oxygen. Blake was prepared to be flown by helicoptor to UAB Hospital for evaluation. We saw Blake off and rushed home to take care of things.

We arrived at UAB that evening and were updated on Blake's condition. He was on the ventilator, hooked up to monitors and multiple medication drips and he was getting a blood transfusion. We just sat by his side, holding his hand, talking to him. They had Blake sedated so he wouldn't feel any discomfort, which I was and will be eternally grateful for that. He would open his eyes occasionally and squeeze our fingers. We were also told that they were wanting to draw blood work the next morning to check for Trisomy disorders-the doctors thought that Blake might have a chromosomal disorder, Trisomy 13, based on the birth defects he was born with. We would receive results within 48 hours there instead of having to wait 4-6 more weeks from the out of state lab (the doctors in Huntsville had already ordered chromosomal studies the day after Blake's birth).

Later that night, Blake's nurse urged us to go and get something to eat-she told us that if there were any changes that someone would come and get us. We had ate and Mike had started up the hallway to look around and one of the NICU nurses came and told me that "we needed to get back now, that he was very sick." We ran into the NICU and walked in the door as they were getting Blake stabilized-he had to be resuscitated. We were updated, and more medication drips were added. We asked if family needed to be called in...we were told yes. I made many phone calls and we just sat by Blake's side...In the early hours of the morning on July 8th, Blake's doctor and nurse were working with him and we all looked up at his monitor and his heart rate became very irregular and he "coded" (went into cardiac arrest) again. Doctors, nurses, and respiratory therapists immediately started working on him. One of the doctors told us that if it looked like he wasn't going to make it, they would give him to us to hold. I just started praying that our families would get there in time to see him once more. They did get Blake back and they sat down and told us that if Blake coded again, he probably would not make it. Our families arrived soon after he was stabilized-they were updated by the NICU staff.

We sat with Blake until later that morning and his nurses once again urged us to go and get something to eat-I did not want to leave my son's side. When we came back, all of the doctors were making rounds. The pediatric cardiologist that was following Blake at UAB came and told us that there was really nothing else that could be done for our son-he was to unstable and sick to even make the trip to surgery, much less go through any procedures. That is when...I knew. I knew Blake would never come home and sleep in his crib and see his family and friends who were thinking of him and praying for him. We were asked by the attending neonatologist if we wanted to let Blake go in peace if he was to code again. I told them that is what we wanted-we didn't want Blakey to suffer.
Blake started going downhill about mid-morning. His vital signs were decreasing; I would watch the monitor and see his heart rate slowing down, a little at a time. My mother was with me and I asked her to go and get Mike. Mike came back and by then the nurses had come over to Blake's bed. It was time to let him go....I think Blake was telling us that too.