Day 5: Slow and Steady

Vivienne had a better day today, but she did take a few small steps backward with her medications and oxygen support. As I've mentioned previously, it isn't uncommon for CDH babies to take one step forward and then two steps back, so this really isn't all that surprising. The important thing is that she isn't careening toward a cliff; she's just adjusting to her new environment. The doctors want to see how much she can do, but they aren't going to push her too hard. Ultimately, Vivienne is the one in charge. She will determine when she's ready for the conventional ventilator and when she's ready for her repair surgery. Slow and steady is the name of the game. Hopefully Viv will have a restful night and be ready to take a few steps forward tomorrow.

One item of note involves Vivienne's heart. She has had three echocardiograms since yesterday morning. Her heart is fine - no abnormalities or function issues - but the cardiology team did recommend a medication to keep her Patent Ductus Arteriosus (PDA) from closing. All babies have an opening called the ductus arteriosus between two major blood vessels leading from the heart. This opening closes shortly after birth since it's unnecessary once the lungs begin to function outside of the womb. Viv's PDA was beginning to close (as it should), but cardiology recommended that we keep it open for now to assist with her pulmonary hypertension. Essentially, the PDA will serve as a "pop-off" valve to relieve pressure placed on the right ventricle due to hypertension. Without that release, the pressure would cause the right ventricle to weaken and become very sick. The PDA should close once the medication is stopped; however, there is a very small chance surgery may be required to seal off the valve.

That's pretty much it for today. Sorry for the lack of pictures, but Viv was very sedated and covered up today. They really wanted to stimulate her as little as possible so she could remain calm. It's very difficult not being able to interact with her, and we are looking forward to the day when we can act more like parents and less like observers.

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