Days 37 - 40: Lessons from the Little Guys

In my last entry, I talked about the lessons we have already learned, and continue to learn from the boys.  While thinking of how to introduce these last couple days, I couldn't help but digress back to that subject.  So true that our lives are fast-lived, fast-paced, that so many small things - the little things really, are taken for granted, under appreciated, and not given the recognition they truly deserve.  I can't say for sure what our future holds in a macro sense, but what I can say for sure is that the little things - our boys, their health, our health, the roof over heads, will certainly be not only recognized, but celebrated as well.  Christie mentioned at dinner tonight that she would not change the way things have turned out, and I completely agree.  Yes, our situation was pretty unfortunate, we would never have wanted things this way, but, at the same time, we are fortunate that advances in medicine and technology have made it possible for our boys to have very good odds of having a normal life in this world.  We've been able to witness first-hand the boys' growth and development during the last trimester, while most meet their children around 40 weeks gestation when all that development took place internally.  This experience for me has given me an entirely different perspective on hospitals, sickness, medical procedures, and medical staff.  How can I be afraid of anything when these boys are so brave???  By the way, I hate when multiple punctuation marks are used, but I believe that sentence required it.

I kangarooed Aiden today, and a few seconds after he was transported onto my chest, he wasn't breathing.  He was moving around, and let out some gas, so I wasn't really all that concerned.  Speaking from experience there have been times when I've let out gas and it's taken my breath away :)  Had to add some comic relief.  I really figured he was fine, and so I started patting him to 'wake' him from what I thought was an apnea spell, but it wasn't working, and the nurse was starting to become concerned.  After suctioning his mouth and lungs from any loose mucus (a standard procedure while intubated done multiple times throughout the day) did not pose successful, she grabbed the bag.  This is when I started to become concerned, but was very cognisant not to panic.  I learned very early on while Christie was delivering, that if I panic in a critical time I would lose credibility and privileges.  Because of my 'panic' during her labor, I was not allowed past the curtain in the OR.  So, with that in mind, I remained calm as the nurse gave him a few good breaths with the bag while the other nurse instructed her based on his vitals.  After about 30 seconds and a couple big breaths, Aiden was back to normal...and dad was relieved.  Holy crap.  I mean really, I've had bad days, but man, I will certainly keep this moment in mind the next time my day sucks.  Wow.  Turns out, he had a spasm where he clenched down on his ETT tube, and although the vent and bag perform the same function, the vent's programmed pressure was not enough to over power the spasm and get him back to normal.  The bag worked wonders.  And so, another lesson learned and we move on......

The boys have been progressing quite well the past couple of days.  Most notably, they are teetering on being inducted into the 3 Pound Club very soon!  Both boys have had some serious weight gains since last Wednesday gaining nearly an ounce a day.  As of today, Sunday, Aiden is weighing in at 2lbs 15oz and Jackson is 2lbs 14oz, and boy does it show.  There is such a difference in their bodies - their limbs have meat on them, when I hold them I can tell the increase in size.  Also as a result of the weight gains, there have been improvements in their breathing (minus Aiden's aforementioned episode).  For the past couple of weeks Aiden was having a hell of a time with his CO2 levels.  Friday morning, out of the blue, the CO2 level in his morning blood gas was well into the normal, and so they decreased the assistance he was receiving from the ventilator.  Friday afternoon, he gave an even lower CO2 level, so they further decreased the assistance he was receiving, and he has been there since.  This is great news, and quite a big deal for Mr. Aiden since he was kind of stuck in a hole for a while.  Having been moved to Si-PAP early last week and doing well, Jackson's settings were migrated over to pure CPAP (continuous positive air pressure).  The main difference is that on CPAP he is initiating all of the breaths, and is not receiving any extra ones in case he forgets to breathe.  Yes, you read that correctly, in case he forgets to breath.  A large number of preemies experience episodes of apnea and bradycardia.  To read more about them, this link gives a fairly solid explanation:  http://preemies.about.com/od/preemiehealthproblems/f/AsandBs.htm .  With Jackson on the CPAP, the next step would be high flow nasal cannula.  In order to wean off CPAP, they start with one hour periods on the nasal cannula called 'sprints.'  Depending on his response, further progression will be determined.

In addition to the breathing improvements, both boys have begun to take interest in their mouths.  Both have been sucking very intensely on their feeding tubes and Aiden on his ET tube.  They will be 32 weeks corrected gestation this Tuesday, which is around the time that the suck/swallow/breathe reflex takes effect.  The nurses say that liking their mouths is a very good thing, considering that part of the occupational therapist's role is to help them like their mouths.  Essentially, they have to reverse all of the negative feelings they have developed with their mouths because of all of the tubing going into them.  They both have been taking a pacifier and sucking quite well.

Mom and dad also had quite the bonding experience this weekend.  In addition to some stellar kangaroo sessions, both boys decided they would leave mom and dad with a huge surprise in their diapers.  After my kangaroo session with Aiden today I opened his diaper only to find the most disgusting mess I've ever seen.  While changing him, he pooped some more, and did it ever smell!  Mom had a similar experience with Jackson today, however, she went through 5 diapers before he was officially changed.  Every time she put a diaper under him, he'd poop some more!  To top it off, the smell was so rancid, that the nurses had to open all the doors in the room and take the garbage out immediately!  Ahhh....my boys.

On another note, we've taken new jobs as Healthcare Relationship Managers.  We're experiencing first-hand how messed up our health care's billing system is.  Doctors not aware of insurance, hospital calling boys "A" and "B" thinking that insurance would actually pay claims with "A" and "B" listed, not Aiden and Jackson.  Who are these people and how does this business function??

New pictures below.

Below:  All of Jackson

Below:  All of Aiden