On Again off Again

Isabelle has a bad on again off again relationship with her nasal prongs. No matter how much she hates it she just can’t get rid of them. Yesterday Izzy had to be put on oxygen again. Isabelle’s oxygen saturation levels seem to trend downward every time she goes off the oxygen, but when she’s on the oxygen it goes up really quickly. I think the doctors don’t really want her on the oxygen long term and wants her to be able to keep the O2 levels up by herself. We think the reason her O2 levels keep dropping off is because she breathes really fast sometimes, like she is out of breath. Now that the infection has been ruled out, they believe that likely the quick breathing is related to the omphalocele sitting on her belly. Most babies breathe using their tummy muscles and diaphragms. With Isabelle, her diaphragm is working well but her tummy muscles do not really exist. She also has to push her omphalocele up to get a full breath, so she has to work extra hard to breathe in a good breath. We now put her on her side a more so that she can breathe a bit easier.

The problem of the quick breathing other than the O2 levels is that she is working so hard to breathe that she is still losing weight. Born at 8 pounds, she is now down to 6 pounds 15 ounces. She is using so much energy just to do the most normal things like breathing. The doctors are trying to up her feeds quicker and also optimize her proteins in her IV fluids bag. Because they are upping her breast milk feeds they have started cutting down her margarine tube. Hopefully they can optimize her nutrition level so that Isabelle can get bigger because I think that would alleviate the pressure as well.

Another side effect of her quick breathing is that we will have to take her oral feedings slower. Now when she is fed through the tube we try to have her latch so that she associates breasts with food. We also give her some milk in an open nipple so she can practice swallowing. But even a couple of sucks exhausts her. I’m really proud of how far we have already gotten, but it pains me to see how hard she is trying and how exhausted it makes her.

Izzy also still has a bit of a murmur in her heart. I wonder if this is why her O2 saturation has a hard time keeping up. I think I will ask that today at rounds. I know the doctors are keeping an eye on it and will order another ECHO in a little while. Hopefully Izzy can get her breathing under control, just really so that she can have an easier time.

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One thought on “On Again off Again”

  1. Jess, it is helpful to have the explanation for her rapid breathing. We hope a way can be found to counteract the pressure of the omph on her little tummy.

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