Monday, June 8, 2009


Dr. P is back today. We are so lucky that we almost always have Dr. A or Dr. P. They're both wonderful and I have great respect for the both. Unfortunately, different doctors have different ideas. Dr. P thinks that after nursing Alexis, I shouldn't need to follow up by offering a bottle. He thinks I should nurse 4 times a day and then the increased calories in the bottle feedings should be enough. When Dr. A was our doctor last week, she had me offer Alexis a bottle after she nursed. I like the thought of giving her a bottle after she nurses because I don't think she nurses long enough and I want her to put on weight. But on the other hand I don't want her getting too much and end up throwing everything up again. Grrrrr. I am pleased to report that she put on another ounce of weight yesterday. Hallelujah! Of course yesterday, when we still had Dr. A, Alexis was getting a bottle after nursing. Today with Dr. P, that stopped. We'll see how her weight does this week.

According to Dr. P, Alexis is taking 80% of her feeds by mouth. That means that when the nurses give her a bottle, they're putting the remaining 20% through her tube. When she is taking the full 100% by mouth, the tube will come out, and he'll change the order for her to eat ad lib. He'll monitor her for a few days and then, assuming everything goes well, she can come home. The cardiologist predicted then that after Alexis comes home, we'll return to his office 2 weeks later for another echo. A plus side of Dr. P's method is that maybe if she's not being offered a bottle after nursing, she may be hungrier at night and take everything by mouth (this is my own thinking, not the doctors. Do you see how I could drive myself mad with this?)

Dr. P and I discussed Alexis's heart surgery briefly. She will be on a vent for the surgery. Another ventilator. 2 vents in her first 6 months of life. It seems so unfair. It absolutely breaks my heart to think of her having to go through more sedation, more pain meds, more IV's, another vent. It makes me very sad and I feel so guilty. The emotions are on overload. I've developed a new word. Friends often ask how I'm doing and my new response: I'm fine. ish. It could always be worse, right?


  1. Fine-ish.....ok-ish......
    crazy-ish...all good answers for a very crappy situation. Hang in their girl!

  2. Oh honey, hang in there! I am sure you feel overwhelmed, who wouldn't? You and Alexis are doing so well, look at all you've been through. You will (and I am sure already do) have a new appreciation for life and what is truly important when you make it through this season. Hug all those kids, have a good cry and sleep good, you will feel better tomorrow! HUGS!