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01/03--Mom and Dad found out that I was their little baby, soon to be born. 02/03--Mom and Dad began telling the family about their little surprise. 03/03--Mom and Dad discovered that I was going to be a girl! 06/18/03--Mom was shocked to discover that she was in labor and I was trying hard to be born. I was 26 weeks old. 08/03--I am still inside my Mom, but Mom is in bed in the hospital. It was decided that I almost certainly would be born with some type of heart defect. Cardiology first entered our lives. 09/04/03--Happy Birthday! I, Brandy Danielle, was born today. 09/14/03--I finally got to go home. I had to stay in the NICU so they could watch my ductus close. The doctors thought I had Coarctation of the Aorta. They discovered, instead, that I had ASD with a Cleft Mitral Valve. Mom and Dad were very sad. 11/03-12/03--My first Thanksgiving and Christmas. I am cooing and smiling and am quite inquisitive about everything. 01/05/04--After having a lot of trouble with eating and growing, the doctors decided it was best to have a heart catherization done to see if I would be a good candidate for surgery. 01/11/04--My family and I checked into Children's Hospital. I am 4 months old, weigh 8 pounds and am about to have heart surgery. 01/12/04--I had an open heart surgery. The surgeon was awesome. I am doing well, but Mom and Dad were speechless and so sad to see me in such condition. 01/16/04--I left the PICU and went to the floor. Doctors said I might go home in a day or so. 01/18/04--I started having trouble breathing today. I ended up having a pulmonary hypertension episode this Sunday evening which led to cardiac arrest. I was without a heart beat for 13 minutes. 01/19/04--I started have Myoclonic jerking and seizure-like activities, so they put me on Phenobarb. Neurology entered our lives. 01/20/04--I tried to go to MRI today, but the movement and temperature differences led to another episode. They only did a few chest compressions this time. 01/26/04--My heart valve blew out, possibly during chest compressions on the 12th, so I had another valve surgery today. I am in very critical, but stable condition. 02/13/04--It has been a very long and hard road but I am finally well enough to leave the PICU. 02/18/04--The doctors wanted my Mom and Dad to feel comfortable about going home before they discharged me. Today my family and the doctors feel I can go home. 02/19/04--Today is my first day at home. I am still very ill, but I am doing okay. I am on continuous oxygen at 1/2 liter; I am continuously on an apnea monitor. 03/04--I began having serious reflux problems 03/06/04--After vomiting all day 3-4 times an hour we were instructed to go to the ER to check the placement of my NG tube and check for dehydration. We were in the ER for 6 hours! 03/09/04--Today I had an upper GI study done, and my tube was replaced trans-pyloric. 03/12/04--I went to the pediatrician because I was very congested. The doctor admitted us to Baptist Hospital to try to get me in the best physical condition before surgery to do a Fundo and G-Tube as soon as possible. 03/17/04--I was transferred to Children's Hospital because the PICU in Baptist was full and a bed finally opened up at Children's. 03/18/04--Today I had surgery--Fundoplication and G-Tube. 03/20/04--I began having trouble breathing last night and was put on the CPAP. Today my heart rate dropped and my O2 Sats dropped so I had to be re-intubated. 03/26/04--After an overnight stay in the Infant Unit we got to go home! 04/09/04--Things have been going well. Unfortunately this morning I had another episode. My heart rate dropped and I turned ashen. I was flown to Children's Hospital in a helicopter. 04/11/04--I got to go home today. The doctors decided I was getting too much formula and my heart couldn't handle the excess fluid. Happy Easter! 04/12-16/04--I began having more seizure like activities this week so the doctors are increasing my Phenobarb. 04/15/04--I had another episode and was medi-flighted back to the hospital. This time they decided that when I get upset and can't calm down I begin to shut down. So much for the pediatrician's advice to "just let the baby cry". 04/20/04--We went for an appointment with cardiology today, and they decided to admit us to the hospital in anticipation of surgery on my Mitral valve as soon as an artificial valve was available. 04/22/04--We were allowed to go home today and plans were made to do surgery on Monday. Mom talked to the surgeon before leaving the hospital and they discussed some major risks (death was high because there isn't a valve my size so one would have to be squeezed in upside down; and brain injury was high because it hasn't been 6 months since my last one). Mom decided to wait for surgery until absolutely necessary. Mom and Dad are hoping I can make it to at least January 2005. 05/07/04--Last night was my first night off oxygen! 05/08/04--I have been doing fairly well. I have good days and bad days. I have been able to stay out of the hospital for 2 weeks now! Hooray! 05/21/04--I had my first majoy outing to my aunt Lizzy's graduation.
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