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...