Days 52 - 54: 4 Pound Club & Extubation!

So much has been happening folks.  I don't want to jinx the progress, so I'll just get right into it:

Last Tuesday the boys had their second eye exams.  Jackson's eyes are fine, progressing as expected for his age/corrected gestational age.  Aiden's however are showing signs of maturity.  You are probably thinking this is a good thing - the eyes considered mature, especially with them being born so premature.  Not so.  All preemies are at risk for Retinopathy of Prematurity, which has to do with the eyes maturing.  It would be better if I had a white board to draw this for you, but I don't, so I will do my best with words and a URL that should give you a better description.  As the eyes mature blood vessels grow outward away from either the retina or optic nerve, I can't remember which, they should grow straight out.  When they show signs of maturity too early, the vessels grow out but not straight - they grow circular.  If it continues to progress, and RoP advances to stage 3+ you run the risk of the retina detaching from the eye, resulting in blindness.  Not to scare you (yet), Aiden's is Stage 1, and will be closely monitored weekly going forward to monitor its progress.  Typically Stage 1 resolves itself, so we will wait and see.  If intervention is necessary, it is a relatively simple laser procedure that is not invasive.  Having had Lasik surgery on my eyes, it doesn't scare me as much, since I've been through it. 
Try this link for more info on RoP:  http://emedicine.medscape.com/article/1225022-overview

Jackson has been making significant progress sprinting on the high flow nasal cannula.  As of today, he is now up to 15 hrs per day, split between a 9 and 6 hour intervals.  If you haven't done the math yet, that leaves only 9 hrs per day on the CPAP!  The intervals will continue increasing, leaning more toward the cannula until he is completely off of CPAP.  When on the high flow cannula, he is on 3 liters of O2 right now, and once down to 1 liter, it will be considered low flow cannula.  He is rocking his feeds and leaving the nurses and mom and dad some pretty nasty diapers.  All of the nurses "have heard" about how smelly the boys' diapers are, so they already have a reputation.  Jackson still has a handful of apnea spells each day - where he forgets to breathe, some resulting in bradycardia - where his heart rate slows to below 100 beats.  As I mentioned a few posts ago, he will grow out of these by week 37.  As of 10:30pm today, Jackson is 4 lbs. 3oz.!!  At this point, this should be gaining at least one ounce of weight per day, sometimes more.  The pictures really show the weight.

Aiden had a huge day today.  Not only was he extubated and placed on CPAP, but he also got a big boy isolette like his brother, and he joined the 4 Pound Club!!  He's had a busy day, and I'm sure he's fast asleep right now.  If you've been following, for a while now, we've been waiting for the days that he continued to deliver some solid blood gases.  He did just that the past couple of days, but in addition, he outgrew his ET tube, and instead of replacing it with the next size up, they put him on CPAP.  He has been adjusting pretty well with the exception of missing his neo-bar (the bar that held his vent tube in his mouth).  If you look back at all the pictures, you'll see Aiden's hand always holding onto the neo-bar, and now that it's gone, he is not happy.  The funny part about it was watching him look for it and trying to grab something.  So, after realizing what he was looking for, I stuck my finger in the neo-bar location, and he latched right on, and calmed right now.  It was truly amazing.  He also got his crib upgraded to the big boy isolette.  The nurses went to a lot of trouble to make sure they set it up so that he faced Jackson.  Funny part is, as soon as they layed him down facing his brother, he immediately turned his head.  No lie.  They can turn their heads still because they have not gotten as big as full term babies' heads are.  Eventually, they will not be able to move them.  Aiden received a round of Lasixs (check the spelling on that) this morning to get rid of some excess fluid.  A strategy to lessen the additional strain he would endure while adjusting to CPAP.  10:30pm update is that he is doing well, and lost 2-3 ounces from last night, and is now just over 4 lbs!

Get ready for a ton of pictures!

Above:  All Jackson

Above:  All Aiden

Now for some videos:

Above:  Aiden sucking on pacifier while kanagrooing with dad.

Above:  Alert Aiden!

Above:  Jackson is ALERT!!



Days 49 - 51: We Give Thanks.

We are falling short on updates folks, but for no other reason than just being busy, and aside from growth in size, progress has not been as remarkable as it was in the past weeks.  Granted, everyday is an improvement, and growth is obviously occurring, it is just not as physically noticeable until you look at it over the course of a few days.  So, for the updates of last week (Tues. - Thurs.), we'll celebrate reasons to be thankful.  First, we are thankful that medical science and technology continues to advance each day, and has gotten to the point that it has allowed us to conceive not only one child, but two.  Without these advances, we would never have Aiden or Jackson.  Religious beliefs aside for a moment, medical research and scientific advances occur each day, so much so that fertility treatments available to us did not exist 30 years ago to the extent that they do today.  In fact, the first 'test-tube' baby (IVF) was not conceived until 1978.  Who would have thought?  Unless we are faced with experiencing (and benefiting) from these advances first hand, we typically take them for granted.  So, we all should be thankful for these developments in medicine even if we have not yet benefited from them, because one day we may need that one rare life saving procedure.

We are also so very thankful for the NICU/Special Care Nursery Unit at Sisters Hospital, specficially the nurses, doctors, and medical staff, because without them, the boys would not have grown and progressed to the stages they are at, and Christie and I would not have gotten through this adventure without their support and patience. 

Above:  Christie's homemade edible cornicopia made for the NICU staff.  She is incredible!

Above:  More cornicopia with mice and cheese!  Good stuff!!

Above:  Aiden is HUGE!!

Above:  Aiden LOVES his neo-bar that holds in his ET tube.  Hand is constantly on it.

Above: Happy Thanksgiving!

Above:  Jackson sprawled out with limbs stretched.  He hates to be wrapped up.

Above:  Happy Thanksgiving!  Love, Jackson :)

Days 45 - 47: Almost 7 Weeks

If we calculate our go home date by Christie's actual due date, this Tuesday marks the half-way mark.  The boys will be 7 weeks on Tuesday, or 33 weeks corrected gestation, which leaves 7 more weeks until we hit 40.  It is both reassuring, but trying at the same time, since I will be honest and say that I am starting to get tired of going to the hospital everday.  Obviously I'm not sick of seeing my kids, but just sick of having to go go the hospital, since they should be at home waiting for me when I get home from work.  Soon enough....

This weekend was a roller coaster, with Friday starting out well for both boys.  Jackson had a solid weekend all around.  He continued sprinting on Friday, wearing the nasal cannula for 3 hours, overlapping the kanagroo time.  He did so well during those 3 hours that he was increased to two sprinting sessions per day, each for 3 hours.  He loves the cannula!  This is great progress for him, and we are very pleased.  He continued to rock solid on his feeds and is now up to 28 mls, with the 27 calorie fortifier, as well as protein.  Jackson kanagrooed with mom on Friday and Saturday, and with dad on Sunday.  Jackson's weight Sunday was 3 lbs. 3oz, with not much being water.  Awesome job buddy!

Aiden started off the weekend heading in the right direction, giving the nurses great blood gases Friday, which were low enough to make changes to this vent settings.  His breathing assistance (breaths per minute) were decreased to the lowest possible setting of 20.  He had another one of his spells again on Friday at the beginning of his kanagroo session with mom.  I mentioned last week that he clenches down on his ET tube, and when he does, he stops breathing.  It is not uncommon for their color to turn gray-ish blue when they do in fact stop breathing, and that is exactly what he did.  The nurse quickly gave him a couple breaths with the vent and he was fine, returned to mom for kanagrooing.  I for one don't really care for these 'spells' he keeps having.  These are different than the apnea and bradycardia (I think).  Anyway, he was so alert when I got there after work, looking directly at me as I spoke to him, which was great to see.  I got most of it on video, which you'll see below.  Saturday, the pressure assistance from the vent was decreased, and they were hoping to extubate him this morning, but that did not happen.  Instead, he required some additional breathing assistance early this morning, and then had elevated CO2 levels in his blood this morning.  Additionally, he gained 90 grams yesterday, which equals just over 3 ounces.  A healthy weight gain is roughly 1 ounce per day on the full feeds, and when they gain more than this, it is usually fluid.  In Aiden's case, it was in fact just that.  Any excess fluid hinders their breathing, making it more difficult for them to carry oxygen to through their bloodstream to the various organs (heart, lungs, etc.) that need it.  Thus the increase in CO2 levels.  As you can see, everything works together.  He was given a water pill this morning, along with a chest and abdominal x-ray.  Both x-rays looked fine, and as the day went on his CO2 level dropped from 67% at noon to 58% at 6 pm.  I believe normal range of CO2 is 40-60, but changes don't typically occur with any breathing assistance unless CO2 levels are around 50.  As you can see 67% is out of the normal range.  When we left the hospital tonight around 7, he was resting comfortably, and we are hoping for another good blood gas at midnight.  Aiden's weight went from 3lbs. 1oz. Saturday to 3lbs. 4oz. Sunday.  Ugh, Aiden.  He needs to get off the vent, especially since he is going to be 7 weeks old.  The gray hairs keep appearing.

Pictures and video below.

Above:  Dad's got Aiden's full attention!

Above: All Aiden

Above:  Mom & Dad kangarooed boys together today!

Above:  Mom and Aiden

Above:  Jackson & Dad during today's kanagroo session

Above:  Jackson so alert after kangarooing!

Day 44: The air is better up here

Jackson's bed was upgraded to a 'big' boy isolette yesterday.  Since he is no longer on the vent, and is now in the 3lb Club, and no longer needs the top of his isolette to come off, it was time to move to the next size.  The beds with the removable tops are usually reserved for smaller babies.  Jackson also started 'sprinting' on the high flow nasal canula yesterday, and again today.  For 3 hrs each day Jackson's CPAP mask will come off and he will get a regular oxygen tube delivering a high flow through his nose.  While kangarooing with mom yesterday he sprinted and did a stellar job!  He also did it again today, and did so well that the docs think they may try him sprinting twice each day for 3 hrs each.  He may start this tomorrow.  Mr.  Jackson also weighed in at 3lbs 1oz today, and continues to rock his feeds with the 4 extra calories and protein for growth.  Jackson also had an apnea spell while kangarooing with mom today.  Mom experienced first hand the lack of breathing, slowed heart rate, and had to give him some pats on the back to get him going again.  Ugh, I hope these next few weeks fly by so they have grown out of these spells.  Jackson got occupational therapy today focusing on bringing his hands to his mouth and sucking on the pacifier.  He did awesome!

Aiden also made some improvements: he got rid of a great deal of the fluid he was retaining, 3oz to be exact.  As of last night, he weighed in at 3lbs 1oz.  Aiden's vent settings decreased to 30 breaths per minute from the vent yesterday, and again, today, the vent was changed to 25 breaths per minute.  His O2 concentration was also down under 30%.  He's trying out a new machine that the hospital is interested in purchasing.  The machine takes a real time and lapsed time view of CO2 concentration in your body.  If you've read previous entries, you may recall me mentioning blood gases and the levels of CO2 measured in them.  Aiden for example, being on the vent and needing to be weaned off, his CO2 settings need to be in the low 50 range for a change to be made.  Blood gases are determined by drawing blood via heel prick in their foot and then measured.  If the machine works out, no blood will be needed, since it is measured with a lead on his side.  Pretty cool stuff.  Aiden also got physcial therapy today, and loved it!  He's been sucking away on this tube, so we're hoping within the next few days that he gets extubated and begins taking a pacifier.  He wants it!


New pictures below

Above:  Jackson with nasal canula.  You can see his face!

Above:  Jackson in his new house

Above: Jackson with pacifier

Above:  Jackson in new house again

Above:  All of Mr. Aiden