Sunday

03.11.2012

I don't think that I ever updated on Brynnley's heart situation. At her 2 month doctors appointment the pediatrician told me he couldn't hear the murmur any more. He listened for a long time and seemed sure that the hole had closed. The cardiologist had originally told me that her chances of having the hole close before 3 months were high. The first echocardiogram and electrocardiogram she had at 3 days old was unbelievably expensive. The hospital was out of network for our insurance, and no other hospitals offer a pediatrics cardiology department. I was reassured by Brynnley's pediatrician that the hole was likely closed. I called her cardiologist at the Riverton IHC. I told him that my pediatrician couldn't hear the murmur any longer. He sounded a little hesitant and unsure, but told me that it would be alright to cancel her follow up echo at 3 months. I did and was relieved that we wouldn't have to fork out money for another test, and that my baby was finally well.

At her 4 month well baby check, I was anxious to make sure the murmur was still gone. I took Brynnley alone to make sure there was no extra distractions to take away from the doctor's focus. It turned out that he could still hear the murmur. The hole was still there. He said it sounded the same as it had when she was little, meaning it was probably the same size hole. No progress. The murmur gets louder as the hole gets smaller and closes. I felt crushed. I have been so reassured that she will be ok, the hole isn't causing her any problems. She was gaining weight and developing just great.

I called the hospital back and scheduled the follow up echo before the end of the year while our deductible was still met. We set it up for December 5, she would be just over 5 months old and maybe a little more progress could be made with her heart. I was nervous, but I really felt at peace going into her appointment. Taylor came with me this time. The appointment was much faster. We got her undressed in the ultrasound room, grabbed her blanket and her favorite Lamaze toy. Taylor just laid her down on his lap. She played with her toy, totally content, during the ultrasound. Occasionally she would grab the cords and yank on them. It was maybe a 10-15 minute ultrasound, much shorter than the first one. We took her to a patient room, a nurse took her blood pressure. It actually worked this time, first try, thank goodness. They did the electrocardiogram after. It was also very fast and Brynnley didn't make a peep. They left us alone for alone for a bit, while the cardiologist looked over the ultrasound and EKG. When he came in to talk to us his demeanor was much less serious than our meeting when Brynn was 3 days old. We laughed about her pediatrician getting it all wrong. He showed me exactly where her murmur can be heard so I can tell the pediatrician where to listen. When she was born she had 2 murmurs. The smaller one had closed with no problems, but the bigger one at her apex between ventricles was still there. He said the hole was a little smaller and the EKG confirmed that the murmur is louder as well. He reassured us that she will be alright. She won't need to have another follow up until she is 2.

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It is still a little scary that there is still a hole in her heart. I worry about it every now and then. I have been a bit more worried about it lately because she hasn't gained any weight in the last 3 months. Weight gain is a positive sign for children with VSD. At the same time, she is going through a lot of changes, crawling, pulling herself up on things, walking around furniture. She eats 3 meals a day of solid food and is nursing much less. She is sleeping 10-12 hours straight at night without eating. There are a lot of things that could be contributing to her lack of weight gain. I only hope it isn't because of her heart. She is thriving and so smart. She is developing perfectly. She has her 9 month well baby check in a week and a half. I am a little anxious to see if he can still hear the murmur; and see what he has to say about her lack of weight gain. Hopefully it will be nothing but good news.

lara

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