Tuesday, January 12, 2016

Weighted Woes

Avelyn has been doing pretty well over the last few days. But unfortunately she's still passing blood in her stools-on and off anyways. This has been concerning because it prevents a complete rule-out of NEC. She has also been running a bit hypotensive on and off which puts her at higher risk for NEC. Plus she's been over perfusing her lungs and not perfusing her body as well as she should or could theoretically-this puts her at an even higher risk for NEC. So as usual the worry has yet to subside. Despite all this, clinically she looks good. Her providers have been extremely conservative with her feeding given all the above but she is finally met her goal feeds yesterday and handled it well throughout the day. 
Yet given she's still more than a pound under birth weight there's a lot of concern about her putting on weight. As she's at such a high risk for NEC and her intestines are showing signs of irritation, it was decided she may not tolerate formula fortication of her breastmilk well. So instead of adding formula to her breastmilk the amount of breastmilk will be increased a bit. So that's what we're doing today. So far she's handling it but it won't be until tomorrow until we really know. If she handles it well then we'll have to try and start moving into bolus feeds. She'll likely have to go home with the NG tube to ensure growth.

That's because cardiac kiddo's have to work so hard to eat. Sometimes they expend more calories eating than they get from their food so they do better with feeding tubes. It'll be a temporary nasogastric tube, not a stomach or g-tube. Sean and I just want what's best for our skinny little baby. She needs to grow as much as possible before her next open-heart surgery, which is only a couple to a few months away. It'll be a very intensive surgery with another lengthy recovery and high risks. In the mean time she'll have to have a cardiac cath to assess her vessel anatomy in more depth and hopefully ballon out her left pulmonary artery that needs to grow before her next surgery. 
So long story short little miss has a ways to go yet but she is making headway and we're quite thankful for that!m Love to all of you and thank you for the positive support and prayers. Our friends and family are more amazing than we ever realized! 

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