Thru Day 84: That's right, Day 84!

Wow, I didn't realize the last post was one week ago.  Apologies fans, as we had a holiday and long weekend in there.  The days are starting to become blurry, since progress has nearly plateaued as we head into the homestretch of our NICU stay.  We started our NICU journey on the evening of October 5, 96 days (or 14 weeks) before Christie's actual due date.  The homestretch is not being measured by the dates, but that we now realize the only things the boys need to do is be able to take a full bottle on their own without having a breathing spell.  I should mention that although this seems to be the most simple of tasks for babies, it is not so for preemies.  They are behind.  Taking a full bottle for them could literally take weeks, and this is no joke.  They need to learn that they need to work to get their food.  They also need to be weaned down farther on the flow of oxygen they are receiving.  Right now they are on a flow of 2 liters, just weaned from 3 liters on Sunday.  They are slowly adjusting to the new reality that they will have to continue breathing on their own without the support.  I'm fairly certain that if they come home on oxygen, that they cannot be on a higher flow than .25 liter, since there is no oxygen concentration control on home oxygen, just a flow control with the concentration at 100%.

So, now the big question.  When will they come home??  That question deserved more than one question mark.  We have not been told or given a ball park go home date, but Christie and I are thinking beginning to mid February.  Feel free to start a pool on go home dates since no one won the birth date pool.  No one was even close on that one :)

Christmas was great.  Aiden received his first bath from mom and dad on Christmas Eve.  He loved every minute of it.  Didn't cry, and nearly slept his way through it!  Jackson was moved back into the pod with Aiden on Wednesday, and was extubated on Thursday, straight to the cannula.  This was a huge relief to us since we thought he'd have to go through CPAP again.

Quick update on the eyes before we get to some pictures.  Jackson's eye were looked at on Friday and everything looks good...so far.  Both him and Aiden are now on the same schedule for exams, and will receive the next on Thursday.  One of Aiden's eyes is completely back to normal development, and the other is nearly there.  Jackson will have his first official follow up post-op on Thursday.  Hoping his goes as well as Aiden's did.


Below: Aiden

Below:  Jackson

Below:  Our Christmas shoot at the NICU



Thru Day 78: Ba-hum-bug!

I don't mean to be a downer, but we've had enough of the NICU at this point.  A few weeks back the docs and nurses asked if we were sick of seeing them yet, to which we responded in delight "No, not at all."  We are no longer full of delight, and are actually growing tired of going there...aside from seeing our kids that is.  So, 77 days or 11 weeks, or for all of you that like to be exact (like myself), 37 weeks gestation.  Hard to believe that they are just now considered full-term; any baby born after 37 weeks is considered this.

Monday (Day 76) was a roller coaster day.  Santa came to the NICU at 2pm, the same time Jackson's eye exam was scheduled.  The News cameras were there, and so the four of us made cameos on Channel 2, Channel 4, and YNN newcasts.  I was able to track down our appearance on Channel 4, since they posted the video on their website.  If you would like to see it, click on this link:  http://www.wivb.com/dpp/news/buffalo/Santa-visits-babies-in-Sisters-Hospital?ref=scroller&categoryId=10001&status=true
We appear at the 30 second mark.  After Santa left, Jackson's eye exam was not as promising as we had hoped.  His left eye was still borderline, but his right had definitely met the criteria for laser intervention, and so at 6pm Jackson had his laser surgery.  They say not to compare kids, but it is next to impossible especially when they are twins and going through nearly the same things as each other.  Aiden popped out of his surgery with flying colors, and had a stellar and quick recovery.  Jacks on the other hand is still on meds for sedation and is also receiving morphine for the pain.  Couple things I think are attributing to this:  a different attending doctor with a different protocol/approach to recovering, a totally different kid, and he is 3 weeks older than what Aiden was when he received the surgery, so he is much more alert and aware of what is happening than Aiden was.  I actually started to watch Jackson being intubated for the surgery, but had to leave.  Word of advice: don't ever watch that.  As of tonight (Wednesday), Jackson is improving gradually.  His vent settings continue to be weaned, and his morphine was discontinued this morning, and fetenoyl was cut in half as well.  He started eating again this morning and is up to 20mls, increasing by 5mls at every feed time.  He continues to be on the vent with hopes that he will be extubated tomorrow, and is still on fluids (vitamins & minerals) and lipids to supplement his food, since he is only halfway to the 46 or so mls that he and Aiden are at.  He also continues to have an arterial line in his other hand for blood gases.  If you want to read more on blood gases, go back to the beginning of the blog, as I spoke in great detail of them many weeks back.

Both boys started non-nutritive sucking on "the breast" :) this past weekend.  Aiden took right to it like he was a pro.  Jackson did ok on the sucking part, because I think he was too much in awe that he was that close to a boob!  Ah, Jackson.  You should have seen the bug eyes.  Anyway, Aiden may attempt a bottle feed tomorrow depending on his respiratory rate.  With preemies, they have to learn how to suck/swallow/breathe while they still have lung challenges, and so we have to monitor them to be sure they don't turn blue while they are sucking.  If they start to turn blue, it means they are not receiving enough oxygen so they have to be given a minute or two to catch their breath.  Very important to constantly be monitoring them.

As of last night (Tuesday), Aiden was 5lbs. 6oz.  Jackson's last weight was Sunday and he was at 5lbs. 4oz.


Aiden:

Jackson:

Day 71: Eye See - A quick update

Just wanted to give a brief update on the eyes:

These updates on the eyes are really starting to challenge my creativity with the blog entry title.  Jackson's left eye is the same as it was on Monday, and the left eye is better.  They are still not at the point where sugery is necessary, but like they do for all kids with ROP, he will be monitored closely with the next exam occurring Friday morning, which surgery shortly to follow if necessary.  St. Lucy, we are calling on you once again.....  On a positive note, Aiden had his 2 week follow up post surgery, and his ROP is nearly 100% gone.  The docs are very happy with his progress.

Day 70: 10 Weeks old

It's hard to believe the boys are 10 weeks old today, and that for the past 70 days we have been to the hospital at least once per day.  Today is the first day that I did not go because the driving was so bad.  People have been asking when they will be coming home.  Right now we don't have an answer to that question and we are fine with that.  But, at a high level, here are some criteria that they will need to meet in order to come home.

1.  Take all of their feeds by mouth.  The boys have not even begun this since they are still on CPAP/nasal cannula.  Have to be completely on cannula in order to start this.

2.  I believe they have to be on a certain amount of O2 on the nasal cannula.  They can come home on oxygen, but my assumption is that it can't be over a certain amount.

3.  Have to be 4.5 lbs.  They have both over this weight now.

4.  Have to be able to maintain their body temperature in an open crib for 48 hrs.  They are both in cribs now and doing well.

5.  I believe there has to be some criteria about having breathing "spells" (aka braycardias), their frequency, and coming home, but again, not 100% on this one.

So, at this point numbers 1 & 2 are holding us up.  Hopefully within the next couple of weeks they will be completely off CPAP and on canula.

Jackson had his follow up eye exam yesterday morning, and the left eye was slightly better, but right eye still the same as it was Thursday.  Neither eye was at the threshold at which they use to determine if the laser is necessary.  However, he was "pre-Plus" which means that he very well may be just "Plus" when he has his next exam tomorrow.  If he is "Plus" tomorrow, then he will need the laser.  St. Lucy, please cure his eyes.

Jackson is also being inducted into the 5 Pound Club today - he weighed in at 5lbs 2oz tonight!  He had a few spells last night and today, so he reverted back to CPAP for a while.  Both boys also received some of their immunizations yesterday evening.

Aiden weighed in at 4lbs 11oz tonight, just a bit behind his brother.  Him, along with Jackson received mobiles today hanging above their cribs.  They love them!

Some pics below.

Above:  All Aiden

Above:  Jackson