6/29: 7 weeks old, Austin to head back to Hoag!

This has been a very good week for both of the babies, and you can see from their weight tickers that they have both been growing steadily with their increased feedings.  Austin especially has grown into the appearance of a near-term baby, with puffed out cheeks and a long body.  Overall, Austin is just astounding the doctors with his progress.  One of our favorite doctors who attends at both hospitals remarked how they never count on a particular outcome with NICU babies, and with the surprises that he sees in his patients it's particularly nice when a suspected serious condition resolves without invasive intervention.  Austin is presently showing no signs of Hirschsprung's, in fact he's been pooping with every diaper.   He is doing so well that none of his doctors believe that there is a need for him to remain at CHOC.  We weren't sure whether the insurance companies would approve his transfer back to Hoag, but we just learned that he has been approved and will be going back soon!  This is fantastic news indeed, no word yet on when the transfer will take place.

We're so lucky that both of our kids are doing well.  Cheryl and I are truly humbled by our good fortune of two very healthy babies getting closer to coming home.

Austin loves to stare at his mommy, and vice versa

He really is looking good here, and this is how he is when he's not sleeping - really mellow!

So both babies have been practicing bottling and nippling, but it's a process that tends to wear them out rather quickly.  For some feedings they both do really well, while others they barely muster the energy to draw a couple of cc's.  The mechanism for sucking proficiently comes about between 34 and 36 gestational weeks, and there's nothing you can do to rush it.  So we'll keep practicing, but so far we have a really good start.

Malia hit a couple of really big milestones this week, most notably tipping the 4 lb. mark yesterday!  She was also moved to one of the peripheral pods in the Hoag NICU, which are reserved for the less serious babies.  This is obviously a good sign for her, and the nurses have even reserved a space next to her for when her brother makes it back to Hoag.  It will be so nice to have them both there, but for now we're ecstatic about how much progress they've made.

Sleeping hard when we arrived last night

She's big enough now that she's been taken off of her Z-flo pillow, and soon she'll ditch the nasal cannula

Such a pretty girl!

Relaxing after her bath last night

Austin and Malia at 34 weeks

We began the weekend nervously waiting to see if Austin was going to respond favorably to his increased feedings, and more importantly whether the resulting stimulation to his gut would make him poop or instead cause more problems.

Austin, 6 weeks old last Friday

We learned on Saturday from his nurse that he had finally pooped, not quite a huge amount, but at least it was something.  It was a slight relief but too hard to tell whether this would be a sign of better things to come.  On our Sunday visit, we found a note taped above his isolet:

Pretty encouraging news indeed!  He looked and acted pretty happy, and before we left the NICU we decided to change his diaper.  Turned out he was in the middle of another big poop!  The nurses were pleased with his new-found regularity also, and the signs are presently not looking very much like Hirschsprung's disease.  So for now, no surgery, he just has to finish his antibiotics and get to 2,500g.  The big biopsy will then tell us whether HD can be ruled out, and hopefully he won't need surgery.  Fingers crossed!

Daddy congratulating Austin on his big day of pooping

He was also placed in a big boy crib, so now we have easy access to him.  Pretty nice!  He's looking much more robust, and finally tipped the 5 lb. mark!

His mom was just as thrilled...

Increased feedings are really showing in his face, and he's now got a double chin

 On Monday morning we had a nice long visit with Malia, and we found her awake and alert.  She napped with her mom for a little while.  She's still doing well, but has a lot of catching up to do on her weight.  She is now at 3 lb., 11 oz.

Malia has very different features in her face compared to her brother

Malia at 34w0d.

Mini smile for the camera

Not much else to report on Malia, as there are no major issues concerning doctors.  She's a favorite among the nurses at Hoag.

Back at CHOC meanwhile, Austin is still doing great today with the eating and pooping.  Now that they're at 34 weeks, they are cleared to try some actual bottle feeding to see how the suck-swallow response is developing.  With just 10 cc's of his 35 cc feeding this afternoon, he sucked down all of it with ease.  Surely a good sign!

Austin's first bottle feed today

And finally, a couple of videos, although my unsteady cinematography may give you a Blair Witch sea-sickness effect.  Sorry!

A small video of Miss Malia this morning, bright-eyed and bushy-tailed:

And one of Austin, doing great on his first ever bottle feed today:

6/21 Update

The first run of weekday nights at two hospitals is running down, and both Austin and Malia are doing well.  We started our visits with Malia, where she had some kangaroo time with Daddy.  We were happy to see that they took her back off of her CPAP after the infection scare a couple of days ago, and she's much happier without the bulky apparatus on her face.

What a difference a day makes!  This is Malia the day before at 33w2d, w/ CPAP

And this is her without the CPAP the next day, Malia and Daddy had a good nap together

Malia is much happier with just a nasal cannula now

At 3 lb., 10 oz., she's looking good at 33w3d

 Malia has resumed feedings and is slowly being increased every day.  She's taking more than her brother now, which should give her an opportunity to catch up.  She's up in weight quite a bit, but hadn't pooped in 3 days, so we were thrilled to hear she had an "extra large" one tonight... Ahhh, the simple pleasures in parenthood!

Austin is doing very well too in his new abode at CHOC, and they've even taken him off of his nasal cannula altogether, which means they can switch him to an NG feeding tube, which looks a lot better overall.  He still hasn't passed his Barium, despite wincing and wiggling and looking like he was trying to work it out.  Poor little guy!  We're not sure what they plan to do for him, but they will probably irrigate and try to get it out of him, because they can't do the biopsy until he clears it out.  They removed his scalp IV because his PICC line is taking its place, and it looks much better!
We'll see where they go with this bowel thing.  At least his belly isn't as distended, and they're watching him closely to make sure he doesn't walk himself up to an infection like last time.

Austin, 33w2d

Still has a funny face, we love it!

Perhaps our favorite Austin pic yet, smiley boy!

 We bought cribs today for Austin and Malia, and dare I say, the reality is setting in of their imminent arrival at home at some point soon.  It feels good to think all of this is temporary!

Austin goes to CHOC

Yesterday we got a call from the attending doctor at Hoag NICU, expressing that she would like to have Austin moved over to CHOC for his bowel issue. It was a combination of factors, some good and some bad, that drove this recommendation. On the good end of all this, his weight was up to the lower end of the threshold for performing the rectal suction biopsy needed to make the Hirschsprung's disease diagnosis. He also was responding very well to the antibiotic regimen that he is to continue for another week or so, and they're very hopeful that he should have his infection completely resolved by then. On the bad side, he failed to pass the last little bit of Barium from the original scan, which could mean that his bowel is not moving anything past this segment of his rectum. What is apparent to me is that since he's been off of his feedings and on total NPO, there's also nothing pushing his bowels along either. The doctors have also stopped the irrigation (enemas) because of the infection, so they're quite sure that since he hasn't passed the Barium that something is not working correctly in his rectum.

So the doctors discussed before that they wouldn't want to move him under emergency to CHOC, so once the infection was stemmed they would feel good about getting him over there once a diagnosis could be made. It surprised us that it actually came about so soon, but I guess you have to see this as an opportunity to move forward and get his issue fixed.

Having the babies separated is turning out to be emotionally harder than we could have foreseen. It's not just the fact of having them at two separate hospitals - luckily they are almost the same distance from our house. The extra time it will take to get through our visits with travel time and gas are an inconvenience, but I don't see a way around any of that. The hardest part is the disruption of Austin and Malia's development together; it just doesn't feel right that they should be apart. These feelings are amplified in Cheryl, who carried them together from the start and loves them equally, but still hasn't gotten used to being away from them, now in two different places.

Beyond that, CHOC, albeit a great hospital, is a different environment than we have grown accustomed to in the last 5 weeks. Teddy bear faces adorn the entrance, but it offers little comfort to concerned parents like us. The NICU is busier (it's a level III and has 54-beds, compared to 21 beds at Hoag), so Austin's pod is crowded and noisy. He shares a pod with some other babies who appear to be long-term admits. We didn't see that kind of environment at Hoag; I think everyone there just planned on getting better and going home fairly soon.

Austin settles in for his first night at CHOC

Austin seemed oblivious to all of the chaos last night, and really was his usual self when we saw him.  His isolet was open (no lid), which is actually pretty nice to have such easy access to him compared with his unit at Hoag.  We both held him for awhile last night, but I think we both felt guilt for not seeing Malia.  She had a good night nonetheless, and Cheryl visited them both this morning.

Ready for bed in his papoose, poor guy had the IV line running in his forehead, ouch!

During Cheryl's visit this morning, the nurses trialed him off of his nasal cannula for 2 hours, and he did great! At least they're moving forward in the areas they can, perhaps he'll be free of his lines altogether soon.

Funny face, cannula free.

33 Weeks, forward strides and hurdles

Since Friday, where Austin's infection was a "touch and go" into the bad zone, it really hit home with a lot of his nurses.  It's almost always better to learn of the seriousness of the condition after the fact, and every nurse in charge of Austin's care has remarked about just how bad it got.  Perhaps one of the worst things about the ordeal was that he didn't lead on to how bad it was getting for him until it got really, really bad.
On a more positive note, he's been responding very well to his antibiotics, although he seems to miss his feedings quite a bit (I think I mentioned this before).  However, he's been taken off of his CPAP again because his problems are not affecting his respiratory function, and he still seems to be gaining weight somehow, now weighing in at a hefty 4.5 lbs!  He looks bigger too, and seems no worse for the wear through all of this, so we're glad that he's such a trooper.
Since Malia's resurgence of brady/de-sat episodes, she remains on her CPAP and still has an occasional brush with a low saturation or heart rate or both.  When we came in this morning, she was in the middle of one such episode, and it was a little too low for comfort.  Unfortunately, she's still to immature to handle this on her own.  But that's the worst of her condition...  Our doctor somewhat nonchalantly told us yesterday that they weren't hearing her murmur any longer, and that he thinks that her PDA has resolved itself.  I guess we weren't expecting a huge celebration for such a milestone, but it certainly is big news in the Malia side.  The nurses said that sometimes these things go in and out during the resolution, but the fact that her murmur was undetectable (even to this untrained ear!) is quite a relief.  Perhaps Miss Malia will be our first kid home...

As for Austin though, the hospital called today and said they would like to transport him over to CHOC for followup on his intestinal issue.  On the surface, this is not the best news, particularly in the fact that our kids are now in different places.  But it also signifies that he's progressed to the weight threshold that they feel they can accurately diagnose whether he has Hirschsprung's disease.  While his weight is still barely there, they feel that since he has not passed the remainder of the barium in his bowel, and that he is responding well to the antibiotics to stem the infection, it is an appropriate time to diagnose and determine whether he will need surgery.

Austin @ 33w0d

He always liked a good swaddle!

It will certainly be hard having our babies in two different places, but we are ready to move forward with Austin's care and get him going on whatever care he needs.  He continues to amaze the doctors as he emerges from his infection, and his transport to CHOC should really be seen as a step in the right direction.  It will be a new environment for Cheryl and I to get used to, as the stories we've heard tell of a more chaotic NICU than the one at Hoag.  Let's hope it will be a short stay, and that it will catapult him into his readiness for home!

Happy Father's Day!

Cheryl and I have both had a brush or two with health scares, and who knows how much luck or divine intervention had to do with any of it?  By the same grace in the cosmos, Austin and Malia are still here too, and nothing humbles us more than that very fact.  

This has not been an easy week for Austin and Malia, unfortunately.  We posted about the suspected narrowing in Austin's rectum in our last post, but we were glad to see the doctors were confident enough to resume partial feedings on Thursday morning as his symptoms seemed to stabilize.  But sometime early Friday morning, he began having episodes of brady/de-sat, and fortunately the nurse had the wherewithal to notify the doctors of the sudden change.  Fearing the worst, the doctor ordered tests which revealed an acute infection, possibly related to his intestinal distention.  Appropriately, he was ordered off of his feedings, put back on the CPAP, and had begun antibiotics to stem the infection before it had become systemic.  

Some might call it mother's intuition; others might say it's some sort of ESP.  Cheryl was up all night with nightmares and discomfort, nearly at the same time that Austin was under duress.  The call from the doctor later on Friday morning, disturbing by its nature at any time of day, lent some explanation to her feelings of anxiety.  Though by the time we were notified things were heading in a better direction, it was a classic case of "can't get to the fucking hospital fast enough-itis."

It was a tough visit, seeing him back on his apparatuses.  He was lethargic, irritated, just not himself.  Poor guy.  I'm sure he'll never remember any of this, but this guy who has seen some tough days, just fought through his worst yet.

We managed to center ourselves and see the good in it all, in that Malia was seemingly doing fine despite all of the commotion.  She had a kangaroo session with daddy for about 1.5 hrs (shown below), which ended abruptly with a bad de-sat.  Apparently her acting-up didn't stop there, and by Friday night she was having more episodes, at least enough to have the doctors' attention, so they put her back on her CPAP and ordered tests just to rule out whether she was headed down the same road as her brother (because they're exposed to a lot of the same people, unfortunately).

I caught myself snoring several times during this session, but she didn't seem to mind!

By this morning, things were headed in a much, much better direction for Austin, and his nurses who know his usual characteristics remarked that he seems to be back to his ornery-self.  His day-nurse, who was his attending nurse the day that all of this went down, reflected back on the day it got really bad for him.  I guess it all sunk in when she told us of her son, who unfortunately suffered a broken wrist during her shift, asked if she could come home.  She explained to her son that her patient nearly died, to which he responded, "yeah, you should stay at work..."  The doctors also remarked how quickly they see these things turn in pre-term babies.  Their philosophy is to over-react rather than to under-react, so we're very glad that everyone involved did the right thing at the moment that Austin needed them to.

As for Miss Malia, she too was headed in a better direction as of now.  Although seemingly a bit bothered by the CPAP, she likely will not be on this regimen for much longer as long as infection is ruled out as a cause.  But it does raise some larger questions about whether her heart PDA is to blame for some of these really low de-sat episodes.  The doctor still felt that she is asymptomatic for any PDA-related complications, while they remain on close watch for any changes as such.  She too was taken off of her feedings until testing is completed, so let's hope that she'll be back on them soon so that she can take advantage of the opportunity to catch up on her brother.

So for Austin, he will remain on antibiotics for another 7-10 days, and he'll also remain off of his feedings in the interim time.  This means that they will have to redo his PICC line for IV fluids, and we're already seeing the signs he's pissed that he's not being fed because he's munching his binky voraciously.  Somehow, he's still growing and getting longer, which is always a welcomed change.

Austin and Malia came into the world on Mother's Day weekend, swirled in a mess of chaos and way too early for comfort.  By Father's Day weekend, they're still causing a ruckus in the NICU.  If "tough" was the family business, these kids are the heir apparent(s).

Our nurse was nice enough to put together my first Father's Day card. 

XOXO

And we would be remiss to not acknowledge the importance of our fathers on this father's day, way beyond the obvious fact of them bringing us into this world.  Austin and Malia exist because of our families' support and love, and they happen to have two of the best grandfathers in the world!

6/14 update

We found out Tuesday that there was some concern with Austin's poop issues, as the doctors noticed increased distension in his tummy.  As a result, they ran some tests to see if he had a blockage or narrowing in his intestinal tract.  Because of his increased feedings and supplementation, his poop isn't quite as viscous as with before.  So the belly distension is what has them most concerned, as the explosive pooping indicates an overload of pressure in his intestines wither due to narrowing or blockage.  So the scan revealed that there was indeed some narrowing in his rectum, which could be indicative of something called Hirschsprung's Disease (HD).
Strangely, this isn't a preemie thing; it is rather something that goes awry during gestational development with the nerve cells (ganglion) being properly dispatched to certain cells of the digestive tract.  As a result, peristalsis fails in the inactive cells and a backup occurs.  What can happen if the backup becomes worse is a rupture and certain infection, or necrotizing enterocolitis (NEC).  The problem with HD is that is almost certainly requires treatment by surgery, of which there are several techniques to "pull-through" the functioning segments to the anus.  Read more here: http://www.aafp.org/afp/2006/1015/p1319.html
He hasn't been diagnosed yet, and it can only be diagnosed with pathology from a rectal suction biopsy.  For whatever reason, they can't even perform the biopsy until he reaches 2500g (he's currently at 1820g).  So in the meantime, they have stopped his feedings to prevent the backup, which meant he had to go back on IV fluids for his nutrition.  They were also waiting for him to pass the Barium from his scan the other day, which he finally did last night - at least some good news...
Seeing him back on the IV was difficult because it seems to agitate him a bit.  Today, they're going to decide whether to resume normal feedings today (starting at half his original amount) or to install another PICC line to continue on IV fluids.  Last night he seemed uncomfortable and perhaps a little pissed that he wasn't getting his usual feedings.  It would be nice if he could get back on the breast milk, but if the narrowing persists it will almost certainly mean he'll need assistance in moving his bowels.  All this until they can officially diagnose him, which is still 1.5 lbs away.  The long-term prognosis is also unclear, but it could have wider implications if it isn't treated surgically.  And we're still trying to figure out what it would mean if the biopsy result was negative for HD.
All of this sort of takes the wind out of your sails.  It's a small bump in the road that I'm sure he'll get through, we just feel a little bad that the little guy has to be hooked up to all those IV lines again.  Worse yet, both Austin and Malia have potential issues that will require surgery down the road.  But what is right in front of us doesn't seem too bad for now, and as long as they're both growing and maintaining their comfort that's about all we can ask for.

Malia continues to do great.  She's up to 3lb, 2 oz., so we're pleased that she is handling larger feedings and growing like a weed.  She sat with her mommy last night for about an hour, and was very alert and happy the whole time.  Such a cute little face...

Bye for now...

1 Month update

On their 1 Month birthday, the babies were finally reunited for a few minutes thanks to their nurse.  Definitely an unforgettable moment, and it signifies how far they have come in just a little bit of time.

Two peas in a pod

Our first family photo (is Austin smiling?)

It was a big day for both of them, as they were scheduled to have their checkup with the Opthamologist for signs of ROP (Retinopathy of Prematurity).  It doesn't sound like a very pleasant experience for them, as their eyes are dilated and eyelids retracted.  But we were told that the procedure is short, and fortunately they both toughed through it without any brady/de-sat episodes, so it seems like it didn't stress them out too badly.  Malia also was re-scanned earlier in the day with an echo ultrasound to check on her PDA.  The check shows no change, so a cardiologist will have to assess her situation later, but it's still great news that she's asymptomatic.

During Austin's morning cares yesterday, he decided to wait until I changed him to push out a poop.  I made the mistake of thinking he was done after the first and second waves, and he splattered the walls of his isolet just for fun.  Little booger!  So his nurse had to clean everything in his isolet, but it gave us some time to hang out.

Austin sat with his dad after his blowout in the isolet

Austin 6/12 @ 32w1d

Cheryl went in to see him early Tuesday afternoon, and he apparently had another isolet blowout.  Pretty funny actually, but apparently the doctors wanted to check and see if his rectum was narrowing because his tummy still looks distended after his movements.  I'm curious to know how they check for this, poor guy!

The aftermath today

The accident didn't seem to bother him, maxin' and relaxin'!

32 week's eve

Austin and Malia are doing great as usual on the eve of their 32 week milestone, with Austin at 3 lb., 14 oz., and Malia 2 lb., 14 oz. (slight decrease from yesterday for her, thanks to a nice blowout we're told!).  Yesterday got crazy in the NICU as three babies arrived in the NICU, including another set of twins.  Moments like those bring me back to the intensity of Austin and Malia's admittance into the NICU, where it can be quite a spectacle.  It appears that all those babies are doing fine today, so the quiet resumed in their pod.  Apparently they could be moved to one of the outer pods soon, which could even mean that they will soon reside in side-by-side isolets - exciting to see how they'll react to one another after so many weeks apart.

Super awake and alert when we arrived this evening.

Malia sat with daddy this morning and did great for the full hour-plus session.  This evening, the nurse decided to try her out and see if she would latch with Cheryl.  Austin whiffed on his first such trial the other day (mainly because he was too sleepy), but little ole' Malia did great and figured it out with some coaxing and positioning from the nurse.  Don't let size fool you, this goes to show how differently the babies progress in their journey home.  And this time it is quite refreshing to see Malia lead the pack in one of the important milestones.  Although she's a full pound behind Austin, "nippling" on mommy is one of the criteria for discharge, so we're on a good start in that category.

Malia, 31w6d: "Hi, Daddy!"

Doing her best Gene Simmons impression

The babies saw a lot of family today, including the Vlasich grandparents as well as their Aunt Marta and Uncle Randy, who all remarked of the noticeably bigger set of babies since their last visit.  Austin is certainly showing fewer signs of his prematurity, and at nearly 4 pounds he could almost pass for a term baby (well, he's still got a ways to go).  Our little fuzzball was so sleepy tonight that we only snapped 1 decent shot of him with his eyes nearly open.  Must be a growth spurt!

Austin, 31w6d

Malia's bath time & picture update

Our visit this evening was great, and daddy got his first chance to give Malia a bath.  It surprised us how light she is compared to her brother, and her hair sports a blondish-red tinge in the light.  Didn't see that coming!  But she tolerated the bath very well, and kept her eyes open when the warming light wasn't blaring into her eyes.  Very cute!

Here you can see how light her hair is:

We finally got to dress her in a special preemie top that Cheryl had bought for each of the kids.

She stayed awake and alert for quite awhile after bath time, very calm and peaceful as usual.

I realized I had a bath time clip from Austin's bath the other day.  Thought I'd share that too, since he's not getting much of the spotlight tonight.

And here is Malia's post-bath from tonight:

6/6 Growing, breathing, and baby massages!

Just a quick post, and not much new to report.  I've added a couple of trackers to the blog page to make it a little easier to decipher their gestational age and weight, and that way I won't have to make a whole post for just their basic stats.

Today Austin is 3 lb., 9 oz., Malia is 2 lb. 11 oz.

Yesterday, Cheryl's morning visit came during their "baby massages."  We didn't even know there was such a thing, but Malia seemed to be enjoying it when Cheryl took this picture.

Both are still tolerating the breathing trial well, and they are still both off of their CPAP.  No other significant changes to report.  Visits are becoming more hands-on and interactive as the babies can tolerate more stimulation.  And you can tell this; their eyes are open a lot more often, and they seem to be aware when we're interacting with them.

Malia 6/6 (31w2d)

 Austin 6/6

Austin 6/6