Day 21: I am a preemie

They say you should never trust a preemie; that they are resilient; that they are fighters; and that they know when you are there with them.  From the very beginning we were reminded to enjoy the good days, and on the bad days, to remember the good days.  We are learning not to trust them.  As we've seen in the past few days, we've watched progress be followed by regression.  Resilient - they are.  From the very beginning, moments after entering the world, they were intubated, poked with needles, given a feeding tube, and had a whole slew of other things done to them, and they've seemed to overcome every obstacle put in front of them.  Resilience if I have ever seen it.

Aiden is starting to tolerate his feeds today, which a huge step for him, and comforting for mom and dad.  If all feeds continue to be tolerated throughout the evening, he will be begin the upward trend of an additional 1ml every 12 hrs, until leveling off at 18ml.  This is the same trajectory that Jackson has been on, and was upped to 11ml today!  I am loving the appetite he has.  He is also stooling on his own and the docs and nurses are very happy with his feeds, thus far.

Aiden is now 2 lbs. 2 oz., and the staff do not believe much at all is fluid that he is retaining.  Jackson weighed in today at 2 lbs. 3 oz., and had his lipids discontinued today, and could potentially have this vitamins and minerals discontinued tomorrow.  Both boys have been getting lipids, which are essentially fats, and hyperale, whch is a solution containing vitamins and minerals, since they arrived in the NICU.  I learned the other day that the lipids and hyperale (both entering the boys via picc line), are adjusted when they are eating, so that total fluids equal a calculated amount of fluid.  So interesting.

Both boys have been on higher ventilator settings since having come off the SiPAP.  Aiden's at 22% oxygen today, only 1% above the air that we breathe.  Prior to coming off the vent, both boys were receiving 20 breaths per minute from the vent, on 21% oxygen.  Aiden has been fluctuating between 40-45 breaths from the vent.  Hoping his oxygen levels improve, so we can start weening the breaths/minute from the ventilator down.  Mr. Jackson has been quite the trouble maker today.  He is pretty exhausted from his 4 days on SiPAP, required extra assistance that the traditional vent could not provide, so he was put on the oscillating vent this morning.  For a better explanation that I cannot provide about the types of ventilators and assisted breathing equipment in the NICU, try this link:  http://www.kristiemcnealy.com/respiratory-equipment-in-the-nicu/.  This afternoon while being moved, part of Jackson's left lung partially collapsed, but was then re-inflated.  I learned today that this is a common occurrence in preemies.  This is where the "they are fighters; they are resilient," statements come to our rescue!  It is true, and not that I don't trust the staff, I more than trust them, I just needed some additional reassurance that others have experienced this, so of course I contacted my newest best friend -google.  Preemies often times bounce from ventilator to ventilator, lungs opening and closing constantly.  I got my reassurance.  Jackson is also getting a chest x-ray every 6 hours to look at his lungs for the next little while.  He will most likely stay on the oscillating ventilator for next couple of days.

Both boys were re-echo'ed yesterday, and there are some pics below that Christie took during the process.

Above:  Jackson's oscillating vent

Above:  Jackson laying at the foot of his bed on the oscillating vent.

Above:  Jackson resting.  Black wire with circle is new.  I believe it is for the new vent.

Above:  Jackson getting echo'ed

Above:  Jackson resting, again.

Above:  Aiden getting echo'ed

Above:  Mr. Aiden getting echo'ed again.

Above:  Jackson getting echo'ed

Above:  Jackson getting echo'ed.