Linden had her AV Canal repair surgery at Boston Children's Hospital on November 17, 2008. We were referred there when, after she was born, the echo showed that her heart had a more complicated anatomy than what they were expecting. Her doctor didn't expect her to get much bigger than she was at birth--5lbs 9.2oz--and he said that Boston is where he sends his "sickest, smallest, and most serious" patients. I remember that appointment like it was yesterday. My mom was with me and we were crying our eyes out. Well, Linden ended up never getting sick or showing signs of heart failure before her surgery. You never would have known that her heart was sick by looking at her. I was so thankful that God kept her well during that time. I'm also very thankful that God led us to Boston because they saved her life! She was in and out in a matter of a week. Can you believe that? I wanted to run through the halls screaming "She had OPEN HEART SURGERY a week ago!!!"
Well fast forward to the five month check-up after her surgery. Her cardiologist Dr. B was doing the echo and was unusally quiet. I don't think I even heard him breathe.
"She has alot of valve leakage, more than I want to see," he said after about 5 minutes of complete silence.
He then went on to tell me that before anything else, he wanted to admit her into the PICU for a blood pressure medicine to lower her lung blood pressure called Enalapril. He wanted to administer it in the hospital in case she had a bad reaction to it. He also wanted to put her on Digoxin to slow her heart rate down and Lasix to get rid of the extra fluid around her heart. That brought the grand total to 5 meds for her as she was already on Sotalol for the SVT (Super Ventricular Tachycardia) that she experienced 4 episodes of after her surgery in the hospital and baby Asprin for what is believed to be a small blood clot in her heart. He admitted her in the hospital that night and administered the drugs.
She responded amazingly well to the medicine well and was discharged after three days. She was coughing alot in the hospital and it continued once she got home so I was concerned that she may have a respitory infection of some sort. The many doctors and nurses who saw her didn't think that she did, though. However, Mommy's gut instincts are always right! She was coughing so much that she vomited all over our middle daughter (Sorry Aislinn!), so I called her pediatrician, who happened to be on vacation and referred me to another here in town. She saw Linden that afternoon and checked her ears and said that she had a raging double ear infection. My poor baby! She had been sick the whole time and no one bothered to check her ears even though I said that she was not feeling well. Dr. C put her on Augmentin, an antibiotic, which brought the counts of meds up to 6!
She started the Augmentin on Monday and by Wednesday she was STILL vomiting and had diarrhea, so I called Dr. C again and she said to bring her in right away. She didn't like the way Linden looked and I was concerned that she wasn't nursing or urinating enough. She ordered a chest x-ray (to rule out pneumonia) and bloodwork to check her electrolytes. About an hour or so later, Dr. C called back to say that her bloodwork came back and her electrolytes were really low so I needed to bring her in for an IV of fluids.
It took the nurse three sticks to find a vein and she finally did. Linden just cried and cried but never really squirmed around. She just keep looking at me with this sad face like "Mommy, please pick me up and nurse me." It was terrible. As soon as it was in, though, I did pick her up and nurse her while she got the fluids. She slept for about 30 minutes and didn't even wake up when the nurse took the IV out. Her doctor also ordered her off of the Augmentin and gave her some antibiotics through the IV, which was wonderful.
Her cardiologist called me in the meantime and wanted me to come to the bigger office because there's a more technologically advanced machine and he wanted some 4D images of her heart to rule out an anatomical defect that would require another surgery. We went a couple days later. It was really neat to see her heart in 4D--it's not what I thought it would look like. It took about 15 minutes to get a really good look at her heart and he sent me in the back room to nurse her while he looked at the shots with his partner. He came in after about 20 minutes and said, "Unfortunately, there is an anatomical defect with Linden's heart and no matter how much medicine we give her we can't fix it. She needs another surgery." I asked about where the surgery would be and he said that we would be going back to Boston but he had to send the information and video images to his colleague in Boston to look over and then they would decide the timeframe for the surgery.
Joe and I were really, really sad. We thought that we put that behind us and she just looked SO healthy that it was impossible that her heart was so sick.
Tomorrow is our follow-up appointment from that day and we're finding out when her next open heart surgery is. I'm very nervous about it. Don't think badly of me, but before her first surgery, I didn't bond with her as much as I could have. I was so scared to lose her that I was basically preparing myself in case something happened to her before surgery that I would be OK. Now, I am a wreck. She is my world. I cannot imagine losing her. I do love her so much more now. It's a different kind of love than before. I was scared to lose her and then she was healthy, but now she's sick again. Please keep us in your thoughts and prayers.