Friday, July 15, 2011
The Silver Lining...Ruby is growing like a weed. She turned 2 months yesterday and has gained 3 pounds since birth. She weighs the same as Luna did at this age and Luna started a pound ahead of her at birth. Ruby is currently in the 25th percentile for height and weight on the Down Syndrome growth chart (yes, she gets her own growth chart) and 75th percentile for head size! She is definitely a Schlich, as Luna's head size was in the 90th percentile while her weight hardly even made it on the charts.
Ruby has gotten so strong, is smiling, is working hard on lifting her big head, is very alert and is awake much more now. She's a very sweet baby that hardly cries and loves to be held. Luna is talking up a storm and comes up with the funniest things to say. We find ourselves reminiscing each day over the crazy things she says. She is learning to ride a balance bike we rigged up for her and loves to climb large boulders at the park. We are very blessed!
The Dark Cloud...Ruby had her follow up with the cardiologist this week. We were hoping for the good news of the holes in her heart closing, but unfortunately weren't that lucky. Aside from the holes not closing, the pressures in her lungs are elevated which is causing the right side of her heart to work harder and has enlarged her heart. Ruby has had some feeding issues since birth with choking while breastfeeding. We had a swallow study done which showed she was silent aspirating milk into her lungs. A few weeks ago I had to start pumping, thickening her milk, and feeding it to her by bottle. After the cardiologist appointment, he was concerned the pressures in her lungs are due to continued aspiration. So, we spent a night in the hospital and they placed a Nasogastric tube. Ruby now recieves her meals through a tube in her nose that goes to her stomach. She doesn't seem to mind the tube, we just have to keep her grabby little baby hands away from it. The feeding is actually easier than the bottle system we were having to do as well.
We go back to the cardiologist in a few weeks and will hopefully hear that the pressures have decreased. If not, we are looking at open heart surgery in the next few months. If the pressures improve, we can hold off on surgery as long as Ruby continues to grow and stay healthy with the hopes the holes will close or for surgery when she's older. Please keep us in your thoughts and send little Ruby some good pressure dropping/hole closing vibes.
As depressing as all this news may sound, day to day life is pretty normal. We do go to a lot of doctors and therapy appointments, but otherwise Ruby is your typical baby and the biggest threat to her life is her big sister over loving her.