Bye Bye Ampho

Dear Amphotericin B,

I appreciate the fact that you fought and bested the nasty fungus which rudely took up residence in my cute little body. But we have had quite the lengthy relationship (20 days now) and while I am eternally grateful for your assistance, I am no longer in need of your services. Lately your presence has become more and more inconvenient. To accomodate you, I have been required to maintain a PICC line (central IV line) which placed me at continued risk of other serious infections. When the PICC line failed four days ago, I then had to keep a peripheral IV line in place... a daunting task considering my new found penchant for moving around. As a result I have undergone multiple needle sticks a day. This requirement has become burdensome to say the least.

So in summary-- I appreciate your services... but good riddance!

Sincerely,
Isaac

Two Peas In A Crib

Emery and Parker have been sprung from their isolettes!
They are now "co-bedding" in an open crib.
The nurse this morning said she already had to break up a few fights.
And the fun begins :-)
A purely tangential bonus is that I can now start bringing my own blankets in for them. When you are a NICU mom, it is the little things :-).





We wish that Isaac could join them now, but it appears that will be happening soon enough. After about a week of stability but not much improvement, he seems to have turned a corner. His oxygen and flow requirements have decreased significantly over the last two days and he looks great! We are very proud of our little fighter.

Ringing In My Ears

One thing that can be said of NICUs is that it is often a noisy place.

There are numerous machines with numerous alarms... per child.

After 6 weeks, Matt and I know exactly what each alarm means. Is the feeding tube pump finished or is the child's heart rate or saturation dangerously low? We can tell immediately. It has gotten so bad that we hear alarms even when we aren't in the hospital (or is that just my psychosis kicking in? :) )

But over the last few days it has grown strangely quiet in our corner of the NICU.

It used to be that if one of the saturation or heart rate alarms sounded... it was one of our children. Now? Chances are that it is another child over the half-wall that separates our corner from the rest of the back room. What a relief! (I am aware that may sound a bit callous since it means someone else's child is alarming)

Don't get me wrong... when the serious alarms sound, I automatically scan the machines attached to our three rugrats just to be sure. It has become habit. But more often than not they are behaving themselves.

This change of events was strangely disconcerting for the first 24 hours. I wondered at times if the monitors were plugged in correctly :-). Now I revel in the fact that our kids are outgrowing the A's and B's of prematurity.

Speaking of the kids... they are all growing well. Isaac is stable again and as long as he remains infection-free (fingers crossed!) he should just continue to improve. I have been able to kangaroo with him the last few days which makes for a very happy mother. Parker and Emery are on autopilot. They are sporting their preemie clothes and at least Parker technically could be moved to a crib anyday because he is controlling his temperature without a problem. They are all now over 4 lbs! We anticipate they will be moved to the Level 2 NICU much closer to our home sometime soon (pending available beds). We have had a couple good days in a row now... dare I say "momentum"?

Matt and I with Emery (please excuse my bad "bang day")



Another picture of Isaac will be forthcoming... I am hoping to get a good one of him with his eyes open today.

Mr. Personality

Because of a little setback with Isaac on Monday (nothing too serious, after a stint on CPAP again he is back on nasal cannula...) I didn't manage to get pictures posted as planned.

So here are a few of Parker...

His hair looks reddish in this picture but it is actually brown.



Parker is "Mr. Personality" as he makes us all laugh with his constant facial expressions. You know exactly how happy or sad Parker is at any minute. He is controlling his temperature so well that they are no longer heating his isolette, but he won't be able to move to a crib until he has grown a bit more. He hit four pounds today... a reflection of the fact that he is a voracious eater.

I will try to get more pictures posted in the next day or two.

Momentum

Isaac has tolerated being out of the Oxy Hood for two days now.

He is still requiring significant amounts of oxygen (usually 35-40%), but the doctor yesterday said he is doing "amazingly well". He has very little reserve so they have to increase his oxygen whenever he gets restless or is stimulated at all. This afternoon his oxygen was down to 32%. Yay! Go Isaac!

What he needs is some good momentum. In the past, each time he has started to improve, Isaac got hit with another complication. At least he is headed in the right direction again and now all we can do is be patient and wait. Because he he is out of the Oxy Hood we are able to hold him, which we did twice yesterday and then I kangarooed with him today. After several days of only being able to look at him or touch him, the ability to hold him again is such a treat.

Parker and Emery are now taking significant portions of their feedings using a bottle. They are also doing well at controlling their temperature. So much so that as of today they are being dressed in clothes (hospital snap shirts that are much too big) and swaddled in their isolettes. Why is this important? It means that I finally get to dress them in their preemie clothes! I am headed over to the hospital tonight bearing clothes for them. They will most likely be out of the isolettes in the next few days and Isaac should be right behind them.

So it just hit me yesterday that they will be coming home soon (relatively-- in another three weeks or so). As a result I have shifted into overdrive. There are so many things I would like to have ready and projects I would like to complete before they come home (I am under no delusion that I will actually accomplish ANYTHING besides diapering, feeding and doctors' appointments for the first few months). So now I am taking all that nervous energy from the last few weeks and directing it towards my lists. And they are long! But I am so enjoying the anticipation of having them come home. One of my projects is to organize my pictures... the hundreds of pictures we have taken so far and not reviewed. I promise to have a few to post tomorrow.

Leaving Da Hood

I suppose it won't surprise anyone when I say the last week has been intensely stressful.

I became admittedly obsessive about watching Isaac's monitors.  Each time his saturation numbers dropped slightly, my heart rate would rise.  On Thursday, Matt insisted that I spend less time at the hospital.  I knew he was right.

So I went shopping.

When Jennifer asked what I went shopping for, my answer was, "My mental health".

And I found some.

Three hours of running errands did me wonders.

Of course, it helped that Isaac was improving.

Over the last few days, the doctors have been weaning down Isaac's oxygen.  He has done very well.   The doctors have been surprised with how quickly the PIE and pneumo has resolved and currently there is no evidence of PIE on his CXR.  Yesterday I was able to hold him for the first time in over a week.  We wrapped him up and I held oxygen near his face while they changed his bed .

When I spoke to the night nurse early this morning, she informed me that orders had been written to take Isaac out of the hood and place him on nasal cannula.  We are grateful he is doing well enough to be tried on the cannula, but we are also nervous about taking him out of the Oxy Hood since he has been doing so well the last few days.  He remains tachypneic (breathes too fast) much of the time, and has a lower saturation rate when he isn't on his stomach.  But his blood gases have been good and he is now on a low level of oxygen (35% compared to the previous 100%).

We are very grateful for all of the positive thoughts and prayers that have been sent our way.  I know that it has made a difference for Isaac and we can only hope that the current positive trend continues.

Parker and Emery both had their first real baths on Thursday night.  Emery was not a fan.  Parker looked stunned throughout the entire event.  Luckily Tami was there to help us document the process so we have great video and pictures.  They are both getting better at controlling their temperature and once they come out of the isolettes I will be able to start dressing them in the preemie clothes we received at the shower.

And as I mentioned to my parents, isn't that what having babies is all about? :-)

Day Of Rest

Isaac:

He has tolerated a lower percentage of oxygen (70%-- which really translates to an inhaled percentage of about 50) in da 'hood for over 24 hours now.  Turns out, not only did he have a pneumothorax (which is almost completely resolved), but he also had a recurrence of PIE (Pulmonary Intersititial Emphysema-- a serious condition which he had at 3 days old but which at that time resolved after 3 days on the jet ventilator).  The CXRs over the last few days again show resolution of the PIE, although with some chronic changes which may lead to him requiring oxygen for up to 6 months.  

They decided to give him another day of rest on the current oxygen level before attempting to wean down the level tomorrow.  See, my theory is that Isaac is a curious lad.  He apparently aspired to try out every oxygen delivery system available in the NICU: jet ventilator, regular ventilator, CPAP, SiPAP, Oxy Hood, high-flow nasal cannula.  Now the only one he has yet to trial is the low-flow nasal cannula (which with any luck he will be sampling in a few days).  See, he's just got his dad's curiosity, that's all :-).

On the infection front, it appears the medication is taking care of those nasty yeast (David, feel free to cease your protest... which, by the way, Isaac wholeheartedly endorsed).  Isaac will need the "Amphoterrible" for another two weeks, but at least we know the infection is responding.  Also, he doesn't have pneumonia (Yay! One infection that he HASN'T actually picked up!).  He is growing like a champ.  He weighs half a pound more than the other two rugrats... he is now over 4 lbs!

Emery and Parker:

What more can I say?  They are doing fabulous.  Emery has been off all oxygen for a few days, so the two of them are flying on "room air".  They are learning to "feed".  When you are still less than 35 weeks, the whole suck-swallow-and-breathe-at-the-same-time thing can be a bit confusing (a fact which both of them clearly show on their faces).  But they are learning quickly. 

We are hoping for more good news tomorrow...

So About That Roller Coaster...

Ummmmm.

Remember what I said yesterday about this journey being like The Desperado?

Well, we took a bit of a loop today.

This morning when I arrived at the NICU, Isaac wasn't on the vent again.

He also wasn't on SIPAP like yesterday.

No, he was now in an Oxy Hood.

He now has a pneumothorax (because really PIE, bacterial sepsis and fungal sepsis clearly isn't enough for a 5 week old premature newborn to go through... *rolls eyes*).

Let me explain. 

For those not in the medical field, a pneumothorax essentially means that air has "leaked" out of the lung into the space around the lung.  

Not good.

Luckily it is very, very small. 

But see, the pressure used to help him breathe on the SIPAP machine had, even over just 24 hours, made the pneumo grow slightly.  To prevent the more dangerous complications of having a significant pneumo, he needed not only to be taken off of SIPAP, but needs to be treated with 100% O2.  Leaving him on any device which used pressure to help him breathe would be likely to cause the pneumo to expand to a dangerous level.

Now there are advantages to having him in the Oxy Hood.

In particular, we can see his face again without multiple tubes (he only has a feeding tube now).

The disadvantage?

The high levels of oxygen leave him at more risk of retinopathy.

But his lungs must take priority over his eyes.

So Oxy Hood it is.

He seems quite comfortable in the hood... or "da hood" as I like to think of it :-).

Best case scenario is that the pneumo resolves overnight and they are able to wean him to nasal cannula with oxygen.

Fingers are crossed.

At the risk of sounding like a broken record...

Emery and Parker are doing great.  They have graduated to being "Feeders and Growers"... essentially they are healthy, they just need to learn to feed better and get bigger.

I promise more pictures will be forthcoming...

Look Ma, No Tube!

There is, south of Las Vegas, a particularly thrilling roller coaster.

It is categorized as a "hypercoaster" characterized by the lack of loops or inversions, but known for steep  drops and high speeds.  I am not a fan of heights, but I would go on the Desperado over and over as a challenge... to scare myself to death and prove to myself that I could manage the fear.

Now I understand why Dr. R warned us that our NICU course would be a roller coaster.

As of today, I feel like we are on the Desperado... only in slow motion.

Sunday morning Matt and I went over to the hospital for what we thought would be a quick visit for a few hours prior to heading back to our side of town for church.  But when we arrived, Isaac was not doing well.  His respiratory status had worsened, he had a significant increase in secretions requiring frequent suctioning which is VERY uncomfortable for him,  and his CXR (chest x-ray) was "cruddy" per Dr. R causing concern that he had a bacterial pneumonia on top of the Candidiasis sepsis.  Needless to say, we never made it to church.  In fact I was on the verge of tears all day.

***As an aside, I do anything possible NOT to cry in the NICU.

I kept telling myself, "There is no crying in NICU!!!!"

Think Tom H.anks in A League of Their Own ("Crying?  There's no crying in baseball!")***

Just before we left on Sunday, they started a new respiratory treatment which helped significantly and they were able to suction a very large amount of secretions out of his lungs.  He was resting more comfortably and oxygenating better when we left to go home.

It was with trepidation that I entered the NICU this morning (for I never really know what I will be faced with)... to find out that our little buddha had extubated (removed the ventilator tube) himself this morning.  And go figure... he was tolerating being on SiPAP (a step down from the vent-- a machine which supports his breathing but doesn't require a tube down his throat).  We are waiting on some culture results as he still may have a bacterial pneumonia.  We should also know tomorrow whether or not the medication is eradicating the yeast or if he has a resistant strain.  Despite the continued questions regarding his infections, he was still doing ok off of the ventilator when we left the hospital tonight.  Not sure what tomorrow will bring, but so far so good.

Emery and Parker continue to progress.  They are very entertaining!  Parker especially is very expressive and alert.  I hope to post new pictures of them in the next few days. 

One Month

And oh, what a month it has been!

The triplets are one month old today

Isaac Update:

As of this morning, his lab values either stabilized or improved.  After three days of waiting, worrying and hoping, it is the first concrete sign that he is turning the corner.  In addition, he started trying to suck on the ventilator tubing and is in general more active and alert today.  His respiratory status has yet to improve but I can be patient :-).  

Isaac reminds us of a little buddha.  Partly due to his appearance... his wide set eyes and oval face.  But mostly because he has been since birth mellow, calm and deliberate (remind you of anyone?  Ummmm...... maybe his father???).  We see these qualities in his eyes, even now.    Of course, the comparison of Isaac to a buddha is particularly interesting considering that one of the main tenants of the Buddhist religion is that suffering is an inherent part of existence...

Parker and Emery are still eating like champs (now a few feedings each day from the bottle or breast) and are steadily gaining weight.  They are now both approximately 3.5 lbs (Isaac is nearing 4 lbs).  Parker has been able to stay off all oxygen but Emery is back on a small amount.  Now that they are nearing 34 weeks, we have been able to handle them more, something we are truly enjoying. 

We are back to having our own little area of the NICU to ourselves... the "Triplet Suite".  Very nice for privacy (such as it is in a NICU), but it also affords us a chance to spread out and get comfortable when we are in what has now become our second home.

A Fungus Among Us...

... But we are hoping that we now have the upper hand.

Isaac is slightly more active today and the full-body rash he developed two days ago is now gone.

He remains on the vent and Dr. R says we can't expect any significant improvement for at least 24 more hours.  The waiting is truly the hardest part.

More good news on the Isaac front...

There is no evidence of local involvement (i.e., "fungal balls") in his heart, eyes or kidneys.  This makes his treatment less complicated.  It is hard to see him on the vent, clearly still lethargic and slow to respond.  But we are relieved to not only know what the problem is, but also to have the treatment already underway.  We are grateful for the great nurses and doctors who caught the infection early and sent blood cultures right away.

Good news on all three...

They all passed their first "Retinopathy of Prematurity" eye exams today.  Yay!  They will have them weekly for approximately 10 weeks.  Besides brain bleeds, retinopathy is the other dreaded complication of significant prematurity because it can lead to blindness.  We are pretty much out of the woods when it comes to brain bleeds.  So far so good when it comes to retinopathy.

The Culprit

Now I love yeast.

Or at least I love the baked goods that require yeast to make them rise.

Where I don't like yeast?

In our son's blood.

I mentioned yesterday that it appeared Isaac had another infection (on top of the other one he is still on Vancomycin for).  He does.  Only it is a generalized yeast infection (in preemies this young EVERY infection becomes generalized).  Not what we were expecting, but not entirely surprising considering he has been on hefty antibiotics for the last 9 days.  He has remained stable on the vent but is clearly a very sick boy.  They have to check his heart (done today and it looks fine), his eyes and his kidneys to look for evidence of localized involvement.  They started him on the medication... which in medicine is nicknamed "Amphoterrible" because of the nasty side effects.  We should see some improvement in about 48 hours.

Just so glad that he won't remember any of this...

On a brighter note....

Parker is now off all oxygen, which is a very good thing since he has become particularly proficient as of late at pulling the cannula out of his nose so that he is oxygenating his... cheek.    Emery is nipping at his heels and was also taken off oxygen today but had an episode of bradycardia and severe desaturation so she is sporting the cannula again.  The other big news is that I was able to feed both of them from a bottle today.  Impressive considering they are not yet supposed to be able to coordinate the suck-swallow-breathe thing yet.  Apparently all that practice they have been getting on the pacifier has served them well:-).

Caller ID

When you have babies in the NICU, there is one number that you never want to see on your caller ID--- the NICU.  Believe me, they are never calling to tell you the babies are doing fabulous.  A call from the NICU always means something has gone downhill.

Last night it was clear that Isaac was having more respiratory problems.  He started having long and frequent apneic episodes.    The nurse suctioned him out well and by the time we left he seemed to be doing better.  I called about midnight and wasn't surprised to hear he had been placed back on CPAP.  We had been expecting this may happen for a few days as he had started having some chest retractions and his oxygenation was borderline.

When the NICU called this morning, my heart started racing.  It was about Isaac.  This morning his apnea and oxygenation worsened significantly and he was intubated--- meaning he is now back on a ventilator.  Dr. R was on and explained what had happened and the tests he planned on running.  He started another antibiotic-- which, it turns out was a good thing.  It appears from the lab work that Isaac has another infection.   

Isaac is doing better on the vent and is resting comfortably.  We can only hope that the infection will improve in the next 48 hours.  Luckily, Isaac is a little fighter and for now he seems stable.

As for me, I will just be glad when the NICU has no cause to show up on my caller ID.

Out Of Snappy Title Ideas

Things are going well.

They are 33w1d today.

Isaac is doing great.  He has gained quite a bit of weight and to our skewed eyes looks downright chunky :-).   He managed to wiggle out of his "nest" the other night and I found his feet hanging off the bottom of his bed.

Parker has particularly expressive facial expressions and LOVES his pacifier.

Emery is eating like a champ and if this continues,  she will be giving her teenage brothers a run for their money.  Like her brother Isaac, she manages to squirm her way out of her bed on a regular basis.

They are all still having "As and Bs" but they seem to be less frequent and a bit less severe than in the past.   We still have a few weeks before they grow out of these episodes all together.   

Yesterday I held all three (kangarooed with Isaac and Emery and held a swaddled Parker)... in my view...  the definition of a "good day".  

34 weeks here we come!

Mostly Quiet On The NICU Front

3 weeks 1 day old

So time for another update.
Things are going well.
Isaac is much improved and Emery and Parker are holding their own.
All three are growing well.
Matt and I will be very, very glad when they grow out of having A's and B's (another three weeks). Isaac was already asleep when we arrived tonight, but I got a few pictures of Matt with Parker and Emery (added at the bottom).

Emery


What I can't explain is how a little girl (3 lbs 3 oz) has a double chin...

Parker



Isaac




Parker and Matt (or at least Matt's finger...)



Parker and Matt



Emery and Catherine's Hand



Matt in action with Emery

Upswing

I am happy to report that Isaac is doing much better.

In fact yesterday he was taken back off CPAP and as of late last night was tolerating the change well. He has a generalized infection in his blood which appears to have responded to the antibiotics they started as soon as he became unstable on Thursday (the final culture results are expected early this morning). Some follow up tests are scheduled, but so far things are looking good.

Emery and Parker are doing well with the more mundane and expected ups and downs.

Mundane.
We like mundane.