Day 36: Fate in action

Earlier this year, on a night when I was desperate for sugar, and a little while before we found out that Aiden and Jackson were coming, I found two fortune cookies buried in the pantry.  This is a true story by the way.  So, of course I ate both cookies.  But, before I did, I couldn't ignore what fate was to bring me, so I read the fortunes.  To this day, they are still posted on our fridge (and in the picture below).  They are kind of difficult to read in the picture, so here's what my future was to hold:  "Children will play an important role in your life," and "Be alert for new opportunities - pleasure or business."

 
It's funny to think that two fortunte cookies could be dead on correct with fate.  In this case, it was only a matter of a couple of weeks until we found out that we were pregnant, and I received a new opportunity at work.  There really isn't a moral to this story, except that the importance that our boys have and will continue to play in our lives is much greater given what the situation we are all in.  The lessons they have taught us so far cannot be even closely matched through anything or by anyone else.  Next time you eat a fortune cookie, pay attention - you never know how close it is to the truth.

Jackson continues to do well on the Si-PAP, which is very encouraging.  The boys need to get off of the vents asap so their lungs can repair themselves from the damage that the vents caused.  We are hoping that Jackon does not tire out this time and continues to progress and eventually move on to CPAP.  Mom kanagrooed Jackson today and as he was being moved from his isolette to mom's chest, he had a huge explosion!  Gotta love the movements.  I mean, would you rather have this or no stool at all??  Jackson is now 14.25" long, a gain of 1.25" since birth.  He weighed in at 2lb 8oz today, and is looking huge to dad!  Jackson was a sucking machine today during his lunch today.  He was loving his pacifier.  Since they are at 31 weeks gestation (their corrected age), the suck/swallow/breathe functions are starting to appear.

Aiden is maintaining his vent settings at 45 breaths from the vent, and most of the time is breathing with them,  and is performing about 15 on his own.  Per minute, that is.  His O2 concentration hoovers around 30%, which some minor fluctuations depending on if he is kanagrooing or if has several desaturations in a short period of time.  Remember, 21% O2 concentration is what we breathe.  Aiden is also sucking away like a mad man.  Since he is still intubated, it is pretty difficult for him to take a pacifier, so he's been chowing down on his endotracheal tube (goes from vent to his lungs), but has managed to get his thumb in his mouth while gripping down on the plate that holds the ETT tube in place.  They've been watching him closely to make sure he does not pull his tube out of his mouth.  Aiden continues to do well with his boulous feeds, and is at 23ml every 3 hours.

Both boys received their first eye exams yesterday, and they did not notice anything alarming at this point.  Their eyes are immature, which is expected at this corrected gestational age.  They will continue to receive eye exams every two weeks until discharge, using these first tests as the baseline.  Being premature, one of the biggest risks to the eyes is Retinopathy of Prematurity.  To read more about it, try this link: http://www.nlm.nih.gov/medlineplus/ency/article/001618.htm

Updated photos below.

Above:  After only 5 weeks, the nurses let Dad loose on the boys!

Above:  Dad showing off his medical skills again.

Above:  Aiden

Above:  Jackson

Days 32, 33, 34: Moving Ahead

Next update will be posted tomorrow - Wednesday.  Dad's tired.

Both boys are up to 21mls on their feeds now, which equates to just under .7 ounces.  Being on the ventilators, both boys have their lungs suctioned out multiple times throughout the day.  Clear to white mucus is normal to pull from the lungs, and anything yellow/green would be cause for concern.  Saturday morning, the nurses got some yellowish-green mucus out of Aiden's lungs and sent it immediately for a culture.  The CO2 levels in his blood that morning were also on the higher 'normal' end, so it was better to take the precaution of the culture.  As of today, the culture is stll negative, so there is no infection.  However, as Saturday progressed, the CO2 levels remained on the higher 'normal' end and so they ordered a chest xray.  The NP was awesome, and actually showed us the x-ray explaining the fogginess that they were concerned about.  It turned out that Aiden's ETT tube that goes into his lungs for the vent, needed to be pushed in a bit more.  He has been developing his sucking ability over the past few weeks and as a result of sucking on the tube, he inadvertently pushed the tube out a bit.  Aiden's vent settings remained at 40 breaths from the vent with an O2 concentration level of about 30%.  As a gauge, the air we breathe has a 21% O2 concentration.  Aiden also received another blood transfusion, to help reduce the CO2 levels, and because he is anemic.  Both boys have chronic lung disease, which is very common for preemies, and they will grow out of it over time.  A lot of the things I mention about their breathing or lungs is directly the result of their immature lungs, and the effects of the chronic lung disease.  To read more about CLD, visit this link: http://www.aboutkidshealth.ca/PrematureBabies/Chronic-Lung-Disease.aspx?articleID=7780&categoryID=PI-nh1-04c

If you remember back about 5 weeks, I talked about Christie receiving a betamethasone (steroid) shot in her hip as soon as she arrived at the hospital and it was determined that delivery was imminent.  The steroid shot was one of two doses that were to be given spaced by 24 hrs, and was administered to speed the growth of the babies' lungs.  The steroids are not a cure for CLD, but was meant to promote and stimulate growth.

Jackson continued to be weaned from this vent settings over the past three days, so much so that he was migrated to SiPAP again!  He was getting 25 breaths from the vent with an O2 concentration just above room air (21%), so they decided to extubate him and see how he did.  He was extubated at around 2pm today to CPAP, but was not digging it, so they put him on SiPAP with 10 breaths from the machine.  Now remember about 3 weeks back, this was our boy that went on SiPAP for 4 days, and then to mechanical vent, and then to oscillating vent because he was exhausted.  He is back to SiPAP again, but this time he's almost one pound heavier, so hopefully it will last this time.  Jackson enjoyed some quality kangaroo time with dad and mom the past couple of days, and there are some great pics below.  Jackson puked twice this morning, but then tolerated the rest of feeds just fine today.  As of last week, he has been getting he feeds from gravity, otherwise known as bulus feeds.

Both boys will be getting their first eye exams tomorrow to check for various things.  One of them being Retinopathy of Prematurity (ROP).  To read more about preemies and their eyes, visit this link: http://emedicine.medscape.com/article/1225022-overview

To close, we would like to thank everyone for all of their support, concern, and encouragement.  We have not been able to address everyone, but wanted to be sure you are all aware how appreciated we are.  Thanks again!

PS - The Sabres win on Saturday was due to the Sabretooth guys that both boys have hanging from their IV stands.  Thanks Grandpa K!

Above: Aiden's first 'sign' of communication.  Check out which finger it is.

Above:  Aiden holding on to mom

Above:  Mom and Jackson's kanagroo session

Above:  Nurses take Jackson out of isolette for kanagroo session.  You can really tell his true size here.

Day 31: Alert!

I didn't mean to scare you.  The boys were so alert on Friday, it was great!  Both boys had their eyes open very wide and seemed to respond to us more than ever before.  Again, so awesome!  I was able to kanagroo Aiden today, while mom spent her hour of kangaroo time with Jackson.  This was my second kangaroo session, and both of us thoroughly enjoyed every minute.  Aiden also filled his diaper from the moment he got comfortable on dad until his hour was up.  What a diaper he had when we were done!  It is truly unbelievable the amount that these boys stool.  Aiden continues to slam his food down, and is up to 20mls with an additional 4 calories added.  His 20mls are administered over one hour every three hours.  Aiden weighed in at 2lbs 4oz on Friay.

Both boys had their 30 day head ultrasounds on Friday.  If you recall, they had two ultrasounds previously done on their heads (one at 3 days and one at 10 days) to check for bleeding (or IVH) on the brain.  Aiden had a bi-lateral grade 2 and Jackson did not have any instance of a bleed.  In addition to reviewing the progress of the first two scans, the 30 day ultrasound also checks for dead (white) areas of the brain, and enlargement of the ventricles.  From the research I have done, I found that a severe brain bleed (grade 4), could potentially result in brain damage.  Brain damage could also be caused from other trauma to the head while in utero, right before, or shortly after birth.  The clinical term for this is PVL.  To read more about it, try this link:  http://www.cpparent.org/pvl/pvl.htm.  Luckily, neither boy has any instance of PVL, though, Aiden's bleed is beginning to heal/reabsorb, and Jackson's remains clear.  Good news, since we've been anxious for the results since the beginning of the week.  It seems like every week or so there is something major that the boys are faced with, whether it is a test, or a change in treatment.  We can't wait utnil this is over.

Jackson spent some time with mom Friday afternoon, loving every minute of the hour.  He continues to be on 20mls dripped by gravity, usually taking about 15 mins for him to ingest the entire feed.  Jackson was 2lbs 5oz on Friday.

Above: Dad and Aiden's kanagroo session

 

Above:  Aiden saying "Cheese!"  He is so alert in this picture!!

Above:  More alertness from Mr. Aiden

Above:  Aiden the entertainer

Above:  Aiden looking like dad

Above:  Jackson eyes wide open!

Above:  Jackson eyes wide open...bigger!

Above:  Jackson, even bigger eyes!

Above:  Jackson and mom kangaroo session

Day 28: Chillin' with Dad

Next update will be Friday, 11/5.  Boys are great, mom and dad are just tired!

Dad got to kanagroo Aiden today!  A bunch of pictures are inserted below.  Both Aiden and Jackson are up to 19ml in food.  Aiden is receiving his through the drip at a calculated rate given over an hour.  Jackson is receiving his 19ml by gravity!  The tube is positioned at a given height for the food to drip down into the tube.  Pretty interesting.  Both boys also received physical therapy today as well.  The PTs work with the boys to foster normal movement patterns and muscle control, increasing midline orientation, promoting behavioral organization and providing appropriate sensory stimulation.  They will each receive PT 3-5 times per week while they are in the NICU.

The boys are also 4 weeks old today.  We cannot believe how fast the first month went by, and are certainly hoping the next 2 months go by just as quick.

I will update more tomorrow, just got back from the kangaroo session and wanted to share!  - Jeff

Above:  3 photos are Jackson

Day 27: Sharing a room...

Just a quick update for today....

Aiden moved next to his brother today in the NICU!  Both boys are now on the same side of the room, Aiden with a window seat, and Jackson next to the room entrance.  Christie was able to kanagroo both boys today - awesome!  I was not there so we did not get any pictures.  I am planning to jump into the kanagroo rotation sometime this week, so I'm pretty thrilled.  Aiden is up to 17 ml and is considered to be on "full feeds" just like his brother.  Aiden's only source of nutrition is mom's milk and all of his meds are administered orally, which means - you guess it, his picc line is out as well.

Neither Jackson or Aiden were under the lights today, so when I got there, they were both looking at me with eyes wide open.  It was a great surprise.  Both boys also got their official membership to the 2lb club: new signs for their isolettes.  Take a look!

Above:  Aiden (left) and Jackson (right)

Their isolettes are covered to keep out the light.

Days 25 & 26: No Tricks...but more Treats!

HAPPY HALLOWEEN FROM THE BOYS!

We had a super weekend with the boys, and the boys made some more progress!

Aiden continues to rock his food, and his being increased by 1.5ml every 12 hrs to catch up to his brother.  Aiden started the weekend below 10ml, but finished at over 15.  The nurses are thrilled with his movements - he is giving them a mess nearly everytime they change his diaper!  Aiden also had his arterial line removed which was being used to take his blood gases, and since he no longer requires them so frequently, they can draw them from his heel.  Aiden ended the weekend a 2 lbs. 4 oz..

Jackson is up to "full feeds" and has leveled off at 17 ml with 4 extra calories added to it!  What a pig!  Jackson started the weekend on the oscillating ventilator and Saturday overnight into Sunday, he migrated back to the conventional vent, on lower settings than Mr. Aiden.  This was a huge step for him, and as I mentioned the other day, the focus is on getting them nutrition and stimulating their growth with the feeds, since as they grow, so will their lungs, which is the first step in getting them off of the vents and on to CPAP.  Jackson's picc line is also gone!  This means, Jackson is no longer getting supplemental nutritin from hyperale or sodium cholride drip.  His only source of nutrition is mom's milk and all of his meds are now administered orally.  Another huge step in the right direciton for our boy.  Jackson ended the weekend at 2 lbs. 5 oz..