Darcie gets another echo. This time Daddy was there to hold her hand so she didn't cry.
Another visit with the pediatric cardiologist and another day where we leave with news we didn't want to hear. We keep hoping Darcie's heart will get better or at least not get any worse. Today they checked her vitals and her breathing is more labored, her lungs sound wet and her color is not great. She also has not gained any weight. Still 6 pounds and 19 inches long. She is sleeping a lot of the time and we have a hard time waking her to feed her. Her body is working so hard she is exhausted and using all her calories to pump her blood.
They did another echo and found more damage. She has another hole in her heart, further down from the first one, in the muscular septum. The original hole is bigger than they thought (9mm). She is in the early stages of heart failure. She is still too little for surgery but if things don't improve we may have to go ahead and risk it. They want her to weigh 11 pounds for surgery.
They are starting her on Lasix to help remove some of the fluid around her lungs and help with her congestion. Digoxin to help her heart rhythm. And Enalapril to help loosen blood vessels so blood flows more smoothly and the heart can pump more efficiently.
We are to increase her calories by giving her formula with extra powder added. She can't have more fluid because of her congestion issues. I can't breast feed her anymore. I can pump and add formula powder to the breast milk but she has to get as many calories as possible without increasing fluids. I am really sad about not being able to feed her. She won't take a bottle from me because she doesn't understand why I won't let her nurse. So we are both missing that time together. We have to wake her every 2 hours to feed even during the night. The medication is supposed to help her be more alert.
We go back to the hospital in a week and see if the medication has helped. She is such an amazing little lady. She will win this battle I am sure. I just have to hold on and keep up with her.
Just reread this and, OMG, so emotional! We are very lucky that we still have the amazing Miss Darcie Do with us. She makes me smile every day.
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