To cut or not to cut

Calder transferred to Fairfax Children's Hospital today.  In addition to being another 20 minutes away, it is also a Level IV NICU (the big poobah of NICU's) and much, much larger. The NICU here has four rooms to Alexandria's two and 75 beds to Alex's 16. Washing procedures for guests are more rigorous (to your elbow! no rings! no watches! one full minute ... and no fingernails longer than 1/4-in), perhaps reflecting the sheer number of folks who use this NICU. NO guests get to touch the babies; only parents. We are limited to four guests for the entirety of our stay. Including grandparents. The feel is more business-like than community. Needless to say, even though we had been forewarned, we were a bit overwhelmed by the size and intensity. We like it.

Goodbye, Alexandria! It's been real.

Calder's transfer was 'ok': he had a brady when they were loading him into the ambulance and that apparently set the tone for the rest of the trip.  I often wonder what effect this experience will have on his future life. Will he hate people touching his feet since he gets lanced in the heels every six hours, will he hate things in his mouth from his experience with breathing tubes, will he want to be a fireman or ambulance driver from his ride across town? Hopefully I'll get to test all my hypotheses in the coming years.

Taryn and I were at Fairfax to greet the little man but were left waiting while they got him settled in. After about three hours of settling in, we were anxious to meet the thoracic surgeon to discuss when the PDA surgery would occur.  After four hours with no lunch and Kraemer nearly keeling over, we learned Calder was scheduled for tomorrow, during the second heart surgery slot of the day, which means he would head into the OR (actually, surgery would occur right there in his isolette) between 11 am and 2 pm. The head doctor (medical director) explained they would do one more echo to make sure nothing had changed (unlikely, he said, since they had stopped the indomethacin early). We headed out, feeling nervous but glad that his PDA would be resolved and prepared to arrive tomorrow around 11 am to sign some papers and be briefed by the surgeons.

Poor little man's head IV.

No more than five minutes down the road, and after living at the hospital for six hours, the new team of doctors called. Low and behold, the PDA had closed significantly and was no longer pumping blood the wrong direction, at least not in amounts to cause Calder's ventricle to swell.  The doctors were still hesitant to not do the surgery since the PDA had closed the majority of the way once before, only to blow back open and have Calder's vitals tank. But weighing the potential benefits to waiting versus moving forward with the procedure now, they encouraged us to agree to postpone the surgery. This news was welcome (hey! no surgery!) but unsettling (this is what he moved here for and we want it resolved ASAP!). In the end, we decided that the wait-and-see approach was worth it, as long as we were not "waiting" too much and "seeing" quite often.

Daddy's Turn

After a rather rough couple of visits, we received uplifting news Saturday morning: his third head scan was normal. This was especially welcome news given his episode the day before with the high CO2.

But before any more medical details, the big news is that today, Daddy got to hold his little boy for the first time.

Although still a precarious operation since he remains intubated, the experience went much more smoothly -- and quietly -- this time since he was on the conventional rather than jet ventilator. Dad did great and Calder loved it. We're convinced that despite the limitations the tube places on how he can form his mouth that he has started to smile, and I'm positive I saw one of his grins while he lay contentedly on Daddy's chest.

Speaking of content, they've moved from the fentanyl he was on originally, to oral morphine to intravenous morphine back to fentanyl at, I believe, a slightly higher dosage on a continuous drip. While I'm not jazzed about my son being all drugged up at such a young age, it is profoundly more palatable to stand by his bedside now, when he squirms infrequently and only slightly, than when he's arching his back, scrunching his eyebrows and kicking out his legs in fairly obvious pain. For the last couple of days, in fact, Kraemer has admitted to being disturbed to the point of becoming nauseous. So it's so nice to see his sweet face relaxed.

Calder also needed his second blood transfusion this weekend. They still couldn't get any kind of line into his arm, so instead, they put a line into his head - we have veins there, too! Bigger ones, apparently. A little disconcerting to walk up to but necessary all the same. And by the time we came tonight, it had been removed since it too stopped working.

After we left Saturday, Calder extubated himself. Again. He's a strong little bugger and obviously determined (we are looking forward to having our hands full!) After the first time I thought about how glad I was that we weren't here when that happened, and when the nurse described the chaos that ensues each time, and having to bag him like when he was born, that thought was fortified. 

I've noticed now that I can hear his leak through the incubator sometimes, it can be so loud. We learned that one of the doctors had tried a size 3 when he extubated himself for the second time the other day, but it was just too big.

We're still awaiting an exact transfer date and time and for his surgery to be scheduled. Apparently, in the grand scheme of neonatal heart surgery, Calder's is minor. It's also being considered elective, not emergency, since he is relatively stable, which means they feel they have some flexibility, and others who need more involved or more urgent surgeries are being given priority. While I'm very anxious for him to have it sooner rather than later now that it's been determined that he needs it, I'm also sensitive to the fact that other babies need it more and sooner, and I'm sure those parents are anxious too. 

They don't do transfers over the weekend unless it's an emergency, so we're expecting he'll get moved on Monday with surgery on Tuesday or Wednesday.

(In between hospital visits we used one of our Panera gift cards to grab something for lunch. Thank you!!)

thank you!!

Off to See the Wizard

I was aware the news could get worse but didn't actually expect it to -- there are certain mind games I've found I play with myself nowadays in order to function. But I'm beginning to feel like poor little Calder is falling apart.

Very early yesterday morning, Calder's lungs collapsed. Both of them, at different points. After forcing them open again, though, his lungs were no longer responding to the jet, so he is once again on the conventional vent.

During this time, his CO2 increased to dangerous levels, which if experienced for long periods can negatively affect the brain.  He had a head ultrasound yesterday afternoon, though we have not yet been given the results. The doctor assured us that the levels had been high for no longer than two hours and that if there were any major hemorrhaging, he would be able to tell without an ultrasound. When the results come back, we'll know whether there are even any bleeds in the brain, big or small.

As of last night, his tiny little hands were big as balloons. They had been sticking him for the last several days to try to insert a peripheral line with which to draw blood for his blood gas tests, but to no avail. Although on two occasions they'd had success at inserting the line into the vein, within an hour or two, the vein would constrict and the blood stop flowing. So much so so that when they removed the line, there was no mess whatsoever. The problem, they think, is that he is SO little that his veins spasm when the line is inserted; the catheters are nearly the diameter of the vein itself.

As of this morning, the doctor was concerned that the PDA medication was doing too much damage to his kidneys. The murmur was still present, indicating that the PDA was, too, so they stopped the meds and ordered an echo.

The nurse didn't have many details on the results of the echo this afternoon other than that his PDA was still there, and was still big. As a result, he is being transferred to Inova Fairfax Children's Hospital and scheduled for surgery on Monday or Tuesday. And so, it's off to see the wizards at Fairfax. We've heard only phenomenal things about Fairfax's NICU and cardiology unit and hope that the docs there can work some magic.

The Dr. called

When your child is in the NICU you never want to get a call from the doctor.  They don't call to celebrate birthdays (at least not yet).  Today the doctor called to tell us that they had performed another echocardiogram and the PDA is wider than it ever has been.  When Calder was born the PDA was 3mm, after the first course of indomethacin his PDA shrank to 2mm and 1mm the following day.  The doctors informed us that it often "relapses" or reopens but I guess hope is an easier course than reality.  The latest echocardiogram puts the PDA at 4mm and there is evidence that it's placing strain on Calder's left atrium, which in turn has decreased the quality of his breathing and blood gases.  He's now back on the jet ventilator. In an effort to gain a better understanding I ran through this peach of an article.  Hopefully this course of treatment will be effective and Calder can get back into his groove.

Sometimes you're up, sometimes you're down

After a string of progress, Taryn and I were greeted with the downswing of the NICU roller coaster ride when we visited tonight.  Calder’s pressure settings were back up to 24 and his oxygen was sitting around 50.  It doesn't

sound like a drastic change but when you’re rooting for progress the setbacks can fully ruin a day.  The Dr.s think that the PDA (Taryn’s mother's intuition at work) might be playing a part and the docs plan to do another echo-cardiogram to monitor the size of the PDA: is it growing, remaining stable, or shrinking. While we visited Calder’s oxygen levels swung widely between de-satting (de saturated) and hi-satting (hi saturated).  Low saturation is fairly obviously not a great idea for most major organs, hi-satting is a bit more nefarious and was not known to cause ill effects until they linked high oxygen levels in preemies to blindness.  Neither alarm (everything beeps!) is bad but stable is always better. He also had a "brady" episode, which means his heart rate dropped too low (bradycardia); this is considered fairly normal in preemies, but we're rather partial to it not happening.

Watching a kid grow can be slow

They've heard the PDA again, which is no good and has been gnawing at Taryn since they first told us about it on Day Two.  Since there is less chance that the medicine (indomethacin) will work and they aren’t sure the PDA warrants a surgery they are taking a wait-and-see approach. The doctor spoke more about the PDA and how the body would close it near regular term (2-week adjusted date in preemie-lingo).  While the PDA was a bit of a bummer the pressure on Calder’s ventilator was good and he’s up to full feeds so they've removed the ‘electrolyte’ infusion and the PICC that it was flowing through.  A mostly good night.

The First Graduation

During our visit today they switched Calder from the always-pumping and very noisy jet ventilator to the conventional ventilator. He took to the change pretty well and at least based on his appearance seems to like it a lot better. I'm pretty sure that a conventional vent can do more damage to the lungs, though, because it isn't as gentle, so we don't want him here very long. Next step will be CPAP, followed by nasal canula.

The new ventilator!

We are also starting to be able to hear him breathe, and I sometimes even hear him squeak! The respiratory specialist says that this is because there's a leak, and the air is breezing through his vocal chords. This leakage is to be expected to some degree because while he's growing, his tube isn't, so the space between the tube and his throat is enlarging. Since the air is escaping when he breathes out the machine cannot monitor his CO2, but he is still getting the oxygen and pressure that he needs, at least for now. He is in between tube sizes; right now he has a 2.5 but he isn't quite ready for a 3, and they don't make a 2.75. Because intubation is a tricky process, and because it's tough to tell when he's totally big enough for the next size up, they want to wait until absolutely necessary or until he extubates himself to try that next size.