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Update: She has had stable vital signs so far and she  been tolerating the nurses giving her a bath or changing nappies. Her heart rate and blood pressure raises on stimulation still but very few moments that it decreases below normal. She has been given boluses of sedative pre-stimulation now they started her with oral meds. This to make her more comfortable.

The more comfortable she is, the less chances she clamps her lungs and go to ph crisis.

She is still edematous but they are diuresing her and she has been urinating well. She has no foley cath attached anymore. She had been pooping also and the medicines are giving the poop a dark color. The nurses have been kind to let me help them change her diapers. I am wanting to take care so much of my baby.

She remains to be sedated and paralyzed because she still requires a high ventilation support (oscillator). She is  slowly weaned from it and planned to be hooked to a regular ventilator and then to room air.  She would have “holidays” on the paralytic agent and whenever she is off from it, she would wiggle and even open her eyes”. But due to the jarring movements of the oscillator, she has to be sedated and paralyZed again. Her oxygen saturation has been consistently above 85 now. However, she gets acidotic at times then alkalotic next.

The building of carbon dioxide differs each time they change vent settings. Her chest xrays show air build up on the left lung which may be Pneumothorax. This is the lung affected by her curved spine. But we pray as they wean her off, her lungs will be better.  I am nervous about the Pneumothorax so I hope it doesn’t result to that. Them adjusting the mean pressure of the vent may lessen the build up. I got that from what they explained to me.

She is still on antibiotics and wbc has been decreasing in count. We have two more days to finish the antibiotic therapy and with that, we hope she gets a litte stronger.

We hope she tolerates being weaned from the vent more as she has started with oral meds for pulmonary hypertension.

They have started feeding her my breastmilk also through her ngtube. It’s a small amount but they wanted the gut to start working.

We are taking baby steps to everything. The doctor says she has minimal progress but sometimes no progress. We will be thankful with that. I have seen her de-sat a couple of times and became bradycardic as well, so having minimal episodes of that in the last 4 days is ok for us.

We continue to pray for her healing. We will be thankful for all the miracles. Should God has other plans, we will pray for strength. Thank you for all the love and prayers.

I miss my baby so much. Her happy and bubby baby image is all i can see each time i close my eyes. All we can do is pray..and endure all of this for the moment.

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