The good news is that we have (perhaps temporarily) removed her NG tube. It's a huge battle to force Sedanafil (her pulmonary hypertension drug) down her throat four times a day. But for the first time, Clara is completely free of all tubes. She had another echo yesterday. As has been the case the past several echoes, they were unable to measure pulmonary pressures. However, everything else about the heart looked good. We're waiting to hear from cardiology about whether the Sedenafil can be adjusted (hopefully reduced!). We're finished with the morphine as of today as well! So all that's left is for Clara to eat eat eat and gain gain gain.
Dr. Yang was not on today, but the attending who is on said she was willing to give her one more day. She's got another 24 hours to gain weight and prove that she's doing okay. I feel responsible for this issue. I know that it's not my fault, but feeding her is my job and it's hard to not take it personally and feel like a failure when she's not gaining. Dr. Petty (the surgeon) came by this morning and his daily analogy was: "This is problem Z. You've gotten through problems A-Y. This is the very last one." Maybe that's what makes it the hardest. Yesterday they were talking about a possible discharge at the end of the week. Today they were talking about putting tubes back in and going back to square one with feeds. I hope and pray that will not happen. I don't want to go back to Y or V or U....
Your prayers, and the grace of God, have solved problems A through Y for us. I'm asking now, selfishly and desperately, for big prayers again. If you have prayed for Clara through any part of this journey, or you know someone who has, please be on your knees for us this next 24 hours. Those of you who have emailed this blog to friends or posted it on your Facebook or Twitter, please do so one more time. Ask that everyone pray that Clara eats heartily and that she will demonstrate her growth objectively with the numbers on the scale that the doctors need to see. Please pray that Clara will gain weight. Gain, baby, gain.
Here is some inspiration. A face totally free of tubes that we want to stay that way.
And here are a few more shots of her in our new home while we "room in" together.
|Milk coma closeup, complete with milk mouth