Day One

Nine days after Ella was born she wasn't hardly eating and was not awake very much. After 24 hours of this we worried there was a problem so I took her to her pediatricians the morning of Friday June 20 at 9 a.m. her temperature was 94 degrees and she was breathing very quickly and looked a little pale. From the doctors office they called 911 immediately. An ambulance came and took her to St. Johns Hospital, we still had no idea what was wrong. At the St. Johns Emergency Room they decided to intubate her immediately, because of her rapid breathing they were concerned she may tire out and stop breathing, by now we were told it may be an infection and they were going to test for meningitis. After many attempts to get an iv in her (having trouble finding a vain) doctors then moved her to another part of the hospital where they put the breathing tube in but before they did they asked us to leave the room and we were met by the chaplain. It was a very difficult time. After we waited a while a nurse came in and told us to go upstairs to the pediatric department.

When we arrived at the pediatric department waited awhile longer then a doctor came in and said it was either an infection or a heart condition, a cardiologist was checking her. All the Doctors seemed very concerned which made us more nervous. We were told a number of times that day that she was very very sick.  We did not think she could have a heart condition, but within minutes the doctor came in and told us it was a coarctation (a narrowing of her aorta) which caused her to not have enough blood circulating throughout her body. When she was in utero her ductus (a blood vessel that connects the aorta to the pulmonary artery) which was opened and within days after babies are born there ductus closes but when her's closed, because of her narrowing of her aorta, she was not getting enough circulation which was causing her to be sick. There is a medicine that can be given intravenously called prostaglandins which will keep that ductus open so she will be able to have enough blood circulating to keep her stable. Also this would give her time to recover if any of the organs that where not getting blood got damaged in anyway but they were worryed that it was to late to re-open the ductus and they would have to do an emediate surgery. By now Jason, his mom and dad, Sharon and Melanie were all at the hospital. Her condition would require surgery which St. Johns could not do, she would have to be transported to either Children's Hospital downtown or U of M in Ann Arbor. We had minutes to decide, we chose Children's because we've heard they were good, they are closer to our house plus they specialize in children. St. Johns called the hospital to make sure they had room and to set up the transport. The nurses told us that children's would send a team of doctors and nurses to pick her up and transport her to Children's. Jason and I went down to the hospital ourselves followed by his parents and Melanie and Sharon. Once we arrived at children's hospital the girl at the desk said the transport team just arrived but it would be a little bit before we would hear anything. We went to the family lounge to wait Jason parents were already there and so was Pastor Terry Carlson. After about an hour Dr. Bedard (the head pediatric doctor in the NICU) came to speak with us and she moved us into a room for some privacy. There she told us that the prostaglandin looked like they were working but the Cardiologist and other doctors were still looking over her to determine what to do and how soon they needed to do it and also that it would still be awhile before we could see her. 

The Cardiologist came in and explained her condition she had the coarctation and also a VSD (ventricular septal defect) also called a heart murmur or hole in the heart. She would require surgery with in the next few days after she had got her strength back and when all her other organs were back to normal (they got pretty beat up from the lack of circulation). After about four hours of waiting we got to see her she looked how she does in the photo above. It was very hard to see her like that, it was the end to a very, very long day. We still did not know everything they were going to do but we were feeling better than we were throughout the day. They did get her pretty stable but she was still in really rough condition and we could not bare to leave her all night. Jason and I took turns by her bedside through the night and we would rest in the family lounge when we needed a break (the family lounge is a story in and of itself we will share more of that later).