Tube Feeds

I'm looking for a more positive note today. Grace has been tolerating her feeds so they are going to increase the amount. It will now be 3cc every few hours in a bolus dose. This should help her grow and gain strength for whatever comes next. We have spoken with the cardiologist, the neonatologist and neurosurgery today, and seen her ultrasound ourselves.

Basically if the ventricles in her brain fill too much with fluid (hydrocephalus) then they will need to be drained. How they are drained will depend on how she is doing. An indwelling reservoir would be preferred, but if she is not strong enough to go to the OR for that, then serial taps of the fluid are an option. Let's hope it is not necessary. Regardless, the chances of her developing CP are extremely high, but to what degree is unknown. You can read on your own on CP. I am too drained to go into too much detail. Suffice it to say that there is no way to predict the severity at this time. We just will have to wait - until she is one or two.

We have neglected her heart lately. Unfortunately the ductus arteriosus is still open. This is the embryological vessel between the aorta and the pulmonary vein that is supposed to close at birth. See prior posts for a better description. She tolerates it well, but at some point it will have to be closed surgically. At the moment she is not strong enough to go to the OR so they have decided to hold off until either she is stronger or the PDA shows signs of becoming a problem.

Everyday Grace gets bigger, stronger and prettier. We become more exhausted, stressed and drained than we ever thought possible, but gain our fortitude to continue from Grace and the love of friends and family.