Days 23 & 24 Progress: Defined

Dictonary.com, another friend of mine says that there are 12 meanings to the word 'progress.'  Although nearly all 12 apply to the boys, definition #4: growth or development; continuous improvement seems to be most suitable to describe Thursday (Day 23) and Friday (Day 24).  Great news as the week winds down, after a not-so-exciting beginning to it.  I'm going to make this blog a bit narrative today, since I became camera happy, mostly with Aiden because mom was able to kanagaroo him on Friday.  Let's first start with a video of him.  Apologies for those of you trying to view this at work - your proxy server is probably blocking the videos from coming in.  Go back and watch at home :)

We were super excited to finally get Aiden's mask off and get a look at both of his eyes.  We were lucky enough to capture them on this video after his awesome kanagroo session with mom.  The isolette cover was still up, and the nurses let us visit with him for a few minutes while he was getting diaper changed.  Sorry for the poor narration on the video...the baby talk may get to be too much after a while :)

Below are a ton of pictures of Mom & Aiden's kangaroo session on Friday.  I got a little camera crazy, and kind of lost track during the upload process, so if you see a duplicate, just enjoy the same picture again.

Above:  LOVE THIS PICTURE!  Both eyes open looking at mom.  This was one of the first chances I had to see both of Aiden's eyes open together.  Simply.  Incredible.

Above:  The nurses noticed a little curl on Mr. Aiden's head.  Could it be curly hair?  Or at least a wave?

Above:  Aiden after kangaroo session in his normal pose.  We looked back at the 18 wk sonogram pics this weekend, and sure enough, Aiden's hands were in the same spot!

Above:  Mr. Aiden again, before the mask goes back on.  Never thought 7 oz. would make that much of a difference, but he looks real now!

Above:  Video of Aiden before isolette is covered back up.

Jackson improved remarkably on the oscillating vent Thursday and Friday.  His settings continued to be lowered, and blood gases (mainly % CO2 present in blood) looked good.  Docs plan to keep him on the oscillator through the weekend, so he doesn't go to conventional, only to be put back on the oscillator.  He was also under the lights Friday, as his rubin levels marginally increased.  Staff believe the rubin levels are increasing because of the blood transfusions they continue to receive.  Not sure I explained this or not, but people have asked me why they get so many blood transfusions.  Depending on their condition - stable, or ever-changing, both boys get blood drawn at specific intervals depending on their condition.  Staff mainly look at the gas (O2 and CO2) levels present at the time, which are indicitive of how "well" they are doing.  For example, when I say Jackson's vent settings are being lowered, this may be because the CO2 levels in his blood have been where they need to be, or perhaps he getting more than enough O2 assistance at the current settings, that he needs to be weened, so they are lowered.  Kind of technical, but it's the best you'll get from me here :)  Anyway, back to the blood.  So, the amount of blood that is required for the specific tests they are running and the frequency of them, does not allow the boys enough time to re-produce the amount taken from them, so they need some help.  Make sense?  That concludes Hematology 101 for tonight.  Enjoy some pictures of Mr. Jackson below

Above:  This is awesome.  "Not the hand again!  Lady, leave me alone and take this shit off of me already!!"

Above:  All Jackson

Day 23 Pictures

Above:  Aiden literally "rocking out!"

Above:  "Mom, is that you?  Get this freaking tube out of my mouth!"

Above:  Mr. Aiden eyes wide open!

Above:  Mom changed Aiden's diaper!

Above:  All Jackson

Day 22: Hungry Boys

We've had people tell us that they could never do what we are doing.  Our response, "we don't know any different."  To us, this is normal child birth, nursing, and caring for our babies.  Sounds weird, right?  This truly is all we know, although we realize it is far from normal.

Today was a better day for both boys, and was another special day for mom.  Aiden's CO2 levels have improved, although he received another blood transfusion today.  He also had 3 bowel movements on HIS OWN today!  Awesome!  He passed his mecronium plug the other day, and we have a feeling it was preventing him from going, and the reason for giving back some of his feeds.  I have a picture of the mecronium plug in the diaper, and I will try to post it here.  Aiden's food also increased today and will continue to increase every 12 hours.  He will be up to 4mls tonight!  Aiden gained 30 grams today.

Jackson has improved considerably from yesterday, being on 80% O2 on the oscillating vent to being on "room air" which is 21% O2.  We are hoping that he only spends another couple of days on the oscillator, and goes back to the conventional vent.  The upper part of his left lung is still reopening, according to the chest x-rays.  The results from Monday's echos were the same as before:   Jackson's PDA is closed, and Aiden still has a tiny one.  They will continue to be monitored.  Jackson's weight did not change today, but his feeds are up to 12mls!  He will hang out at 12mls for a bit to see how he handles them.  They are also adding fortifier to his feeds to increase his calories.  Guess how many calories it adds?  2!  That's right, I said 2.  Apparently it makes a difference.  Both boys look bigger and more healthy than when they were born.

Mom got to kiss Jackson today!  She was so thrilled, and I'm sure Jackson was too.

Pictures below.

Above:  Aiden's mecronium plug!  You asked what the poop looks like :)

Above:  All of Aiden hanging out.

Above:  Mom with Jackson

Above:  All of Mr. Jackson

Above:  Jackson's oscillating vent

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.