Friday, July 9, 2010

The D Word

For the past two days we have been working on feeding. Yesterday's radiographic swallow test had mixed results. Ginny did well protecting her airway while sucking on the low-flow nipple, but seemed to have aspirated a little milk while using the standard and high-flow nipples. The Occupational Therapist came up to work with her a little after the test, and she did OK.

Today the OT was back and Ginny did well with her morning feed. My parents got to watch me feed her before heading back to Connecticut. (We're using the bottle for now. No, Matt Z, I have not been fitted for a man-bra.) They have been down here for about 5 weeks and needed to get home.

During morning rounds Dr. Malhotra (Dr. Bleiweis' partner and a very skilled doctor in his own right) actually used the D word - discharge. We have a plan to get Ginny feeding without the tube - and if she can stick to the plan - we could be home as early as the middle of next week.

Ginny's afternoon feeds didn't exactly go according to our master plan, but we think we've figured out the problem. From the day of her closure until a couple days ago, she was receiving her milk through a tube that went through her nose, down her esophagus, through her stomach, and into the first part of her small intestine. She was fed continuously through that tube at 10 cc per hour. After her swallow test, that tube should have been pulled back so that it emptied into her stomach. Whatever she didn't take from the bottle would be fed to her through the tube. We think that tube didn't get pulled back as far as it should have been, so when we tried to feed her 30 cc through the tube this afternoon, it didn't go to the right place. That caused her quite a bit of discomfort in her belly, but we've pulled the tube back some and she's feeling better.

The only thing keep us here at the hospital right now is Ginny learning how to eat. We're a little frustrated because it sounds so simple, but it really isn't if you think about it. She has to coordinate sucking, swallowing, and breathing all at the same time without drowning in milk. Most babies learn that in the first two hours of their lives and it becomes instinctive as soon as the figure it out. Ginny is six weeks old today and she hasn't been able to eat for most of her life, so it doesn't come as easy for her. We're OK, though. We'll stay here with her as long as it takes.


  1. Jason &Rachel, the end is can feel the warmth of your daughter in your home soon. I know it must be frustrating...o remember well with the twins. She will be eating like a champ soon and you will have your family home together, as it should be...keep your chin up. GINNY GIRL, YOU ARE LOVED!

  2. Jason and Rachel you are traveling quite a rough journey right now. I think about you three every day when I check Ginny’s Blog. I wish I could think of something clever to say, but the best I can come up with are ongoing prayers for you. I hope when Ginny is finally home in the loving arms of her parents that you will have her blog bound into a diary for her to read when she is older. Very few kids get to know how much their parents loved them from the very start or how precious that life is. More prayers coming your way.

  3. When you look back over the past weeks it is so amazing how well little Ginny is doing. She has been through so much in her little life! She'll conquer this eating thing too I have no doubt. Keeping prayers coming your way. You'll be home before you know it!Love to all of you, can't wait to meet precious Ginny!

  4. A little bit of practise and she'll be eating like a champ! You're almost home where you belong Ginny. Keep up the good work. :)

    Continued prayers for you and your family.

  5. Go Ginny!
    So glad for you hear the D Word is a beautiful thing!
    continued prayers still headed your way. <3