Wednesday, May 25, 2011


Prayers for Grace this morning as she is going to go to the OR again. They are going to first start out with new lines, a PICC in her left thigh and a Broviac on the right in her neck/collarbone area. Once those are in, if she is still tolerating well, they will scope her to see what is going on with her stomach. Yesterday they tried to place a tube around her stomach and into her intestines but they could not get it, and did not want to keep trying for fear of perforating something, so they stopped. They did inject Barium to be able to watch it to see what is going on and they watched the Barium fill her stomach and then just sit. When the stomach is filled, it should very quickly, within minutes begin to drain into the small intestine. One hour later they did another xray and found that some Barium did drain into the intestine, but a good amount was still in the stomach. So they know that her stomach can drain but not nearly as quickly or as well as it should. Why, they are not sure. So depending on what they find today, they may try to do another NG tube and bypass her stomach if they can, or they may place a J tube and G tube. Those would be directly inserted into her stomach to drain it and into her intestine to feed it. Her nose and mouth would be free of tubes and she would be able to start feeding. This is not at all what I had hoped for for feeding but if it is going to allow her to begin feeding and get off of TPN and Lipids and move forward then I am ok with it. It would not be an end to the prospect of oral feeding. I was told that as soon as she is extubated we will begin working on oral feeding, to get her mouth going. Even if she has the two tubes, if she decides she likes oral feeding, even if her stomach still cannot digest the food, she can take as much by mouth as she wants for comfort and practice if there is a tube there to drain it out.
I think that she will be so much more comfortable when she is extubated, which she is on her way to. She hates her ET tube with a passion and can throw a very big fit to show it. I am hoping that gettting her off the vent soon and getting her to be feeding with just allow her to take off, and progress.
Her ECHO showed that her PPHN was being controlled and they were very happy with it's findings. I am too.
Please pray that she has a smooth trip to and from and in the OR and that she is able to start taking some steps further in the right direction so we can get her home soon!


  1. So glad to hear Grace's PPHN is being controlled well! That makes the other stuff she is going through that much easier. Prayers that her OR trip is a successful one and that her stomach starts to figure out what it is supposed to be doing!! Also thinking of you Miranda. I am exhasuted all the time......and you have been doing the CDH dance for a month longer than me....with 2 more children that what I have. Hang in there girl -- ~Janna Caravia

  2. Lots of prayers being sent your way for Miss Grace and a quick and easy trip to the OR. Hang in there guys!!!!!!

  3. My daughter, Chrissy (mother to CDH baby Clara), sent me your blog. I am praying for Grace and hoping that the doctors can help her with all these digestive issues. So glad to hear that her PPHN is being controlled! You are an amazing mother, and I know that your positive attitude is making a difference for Grace. You young mothers of CDH babies amaze me... You are a special group of women.