Monday, July 29, 2013

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.

Sunday, July 28, 2013

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.



video

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!!

Friday, July 26, 2013

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.

Wednesday, July 24, 2013

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.

Tuesday, July 23, 2013

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.

Monday, July 22, 2013

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.

Sunday, July 21, 2013

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. 

Friday, July 19, 2013

I Got to Hold My Baby Tonight!

I got to hold my baby tonight!!

video
When I asked how the kangaroo care discussion had gone, I wasn’t really expecting to get to do it that moment. But the nurse on, Tiffany, spoke with the doctor, who told her if she was comfortable moving the baby, it was a go. (BTW, we love Tiffany!)





This was really quite the production. While the tube is in – it’s only in as far as 5cm, so it wouldn’t be hard to pull it out far enough that it is no longer effective – this fun event may not happen very often.

He is so light, barely there, but tonight he felt to me like our baby.

Kraemer’s turn next time.

He is now up to 8 ccs in feedings and weighs more than 800 grams. They also managed to insert another line; not where they wanted, ideally, so it isn’t actually grabbing accurate BP readings, but in a place that will allow them to do their thing without poking him in the heel every time. Big plus.

Wednesday, July 17, 2013

Doing What We Can.

For the last several days, essentially since he had the UVC (umbilical venous catheter) line removed and the PICC inserted, we've been asking when they plan to remove the UAC (umbilical arterial catheter) line as well. This is the line that measures his blood pressure and through which they draw his blood for blood gases. They’d told us the lines were only “good” for a week and a half at most, so as we approached two weeks, I was really starting to wonder. We hadn't seen a doctor directly for days, and the nurses each time would agree that it would be “soon.” So, when Kraemer called to check in on Calder this morning, I suppose we were not surprised when we learned they were about to embark on the procedure. Apparently, the line “had gone bad;” "bad" doesn't mean infected, just that it stopped working, so they were forced to remove it.

Unfortunately, they did not have much luck placing a peripheral IV into his arm. Instead of poking and prodding him for too long, which his sensitive and fragile body doesn't very much like (heck, I can barely give blood), they decided to stop trying. This means that they are taking his blood pressure now only periodically manually, rather than monitoring it constantly, and that they have to draw his blood through his heels. I hate to think about the pain this causes him and can only hope that the drugs they give to sedate him mitigate some of this pain.

Speaking of sedation, they say he is moving more, and to keep him from extubating himself, as he’s done once before, they are now administering the phenobarbital every two hours.

He’d had about 1 cc residual after his last feed when we saw him this evening, but he is also now at 6 ccs.

We think he likes our touch (and maybe part of that is our scent) so we do our best to give him about 45 minutes minimum of touching each day. It’s tough to tell, but he usually starts converting his oxygen at higher rates after a few minutes of us touching him; last night he came down several points on his oxygen just while we were there, down to 33% oxygen in the air that they’re pumping. As a reminder, 21% is room air. And while he got down to room air during his “honeymoon” phase, he’s since been regularly in the 50s and 60s since.

We also think he likes our voice, or at least knows it. This one is harder since we don’t want to be too loud, and we don’t like to have the doors open too long when other people are being too loud, either. To keep up the talking, I tried making up a story but got about as far as “once upon a time,” so my mom sent us a nice pile of books from when I was a kid. Thanks, Mom!

As we were leaving, one of the nurses asked us whether we’d considered kangaroo care. There are many benefits, but it can get tricky with all those tubes, and the doctors want him to be medically stable before moving him too much. She told us she’d speak with the doctor about when it might be appropriate.

In the meantime, though, Kraemer and I started each sleeping with cute little blankies two of his cousins sent to us, with the idea that they will pick up our scent and then be placed in the incubator with Calder. I'll spare you all the very sweet photo of Kraemer with his little blue bear blankie with Calder's name on it. :)

Tuesday, July 16, 2013

Keeping Up.

Calder was still doing okay as of tonight. He went up to 5 ccs in his feeds. His oxygen was down (we'll see if that lasts...) His triglyceride reading was high, which means he has too much fat in his blood, so they stopped his lipids. He is still off the light and now weighs 780 grams.

People often ask us how we’re doing, too. When Calder has good days, we have great days! Getting news from the doctors and nurses that he has improved in one way or another -- though they never cease to caveat it -- is always uplifting.

More generally, I’m exhausted, always. It’s a struggle to get enough sleep. All I do between visiting the hospital to see Calder is pump, eat and sleep, and it’s amazing how those activities take it out of you and seem to leave no time for anything else. Both my work and personal email have many unanswered emails asking after us and Calder, which is unusual for me; we sometimes forget to prepare meals or even pick up groceries; I barely feel I have time or energy in the day to run down the block to CVS.

Kraemer is back to work, and I start back tomorrow. I’m trying to find the right balance 
between saving up all the time I can for Calder when he finally comes home and keeping myself healthy so that I can be useful to him now.


Monday, July 15, 2013

Slowly but Surely.

The news is getting less and less intricate, which I think is a good thing!


The other day, I forgot to mention, his mucous tested positive for bacteria and cocchi. But just a little, and the nurse (practitioner) didn't seem at all concerned. The nurse today didn't even mention it to us, and we didn't ask.

He went up to FOUR ccs in his feeds, yay!, and is still digesting it.

His weight has also increased: last night he was at 780 grams. Again, to be taken somewhat with a grain of salt since he has so much equipment on him that it’s tough to get an accurate and thus consistent read. The scale is built into the Giraffe, and he cannot be without all his accessories for very long, so in order to weigh him the nurses have to do their best to lift all his equipment from the base without actually removing it from the incubator.

He went down in oxygen a bit on the ventilator. He was up while we were there, or oscillating back and forth, really, so Tiffany worked on clearing him of mucous. She also suggested to the respirator expert lady that maybe he had outgrown his tube. 

His blood gases today were excellent. He was a little acidic yesterday but perfectly in range today.

Thanks to our friend Kate, who dropped off cupcakes that easily compete with the best in DC (lookout, Georgetown!), we remembered to celebrate Calder’s two-week birthday. Little milestones, as she told us, are worth celebrating. Go Calder!

And finally, I’ve enjoyed reading this blog: http://kingproductions.com/tommy.htm. Not because it’s a success story, but because it’s a similar story. And it's nice to know we aren't the first to ride this roller coaster.

Saturday, July 13, 2013

Calder Loves His Fam and Friends!

Calder had visitors outside of the family today! Veena and Akash stopped in to the hospital this morning to say hello and deliver some very thoughtful gifts. He is going to be a very stylish young man, just as soon as the nurses let him sport the cutest-ever preemie garb he received.

He'd been creeping up on his respirator (at 28 this morning) but was at 27 tonight. Small victory. Hopefully he keeps trending down. We need him to improve here before he gets to graduate to the next type of respirator.

He had been huge the day before last (740 or something) but went down again to 6-- today. But that's okay. Better than the 540 low he had earlier this week.

He is still tolerating his feeds and went up today from 1 cc to 2 ccs. Still not enough that he's getting any nutritional value from the milk, but it's progress.

Feeding time. 2 ccs!
He's back on one light. The nurse that was on tonight (Perry- just back from her honeymoon!) said that that was "normal." I'm not too worried about it.

Otherwise, there is really nothing new. He had a quiet day and we are hoping for a quiet night!

I brought the nurses/staff chocolate chip cookies. One came over to tell me that in her 13 years, she'd had baked goods, but never any that were STILL WARM! (her emphasis :))



We were also on the receiving end of some yummy goods tonight, and have been since Calder was born. SO many friends and family have been incredibly generous in many different ways -- meals, treat packages, blankets, clothing, gifts, gift cards and checks -- to comfort Calder or to ensure we have something to put in our stomachs and power us through Calder’s stay in the NICU. I would name you all if I weren't worried I might forget someone, but please know that your thoughts, prayers and gifts are so appreciated.  It’s amazing how little time we have to prepare meals, and I realized just now that I cannot recall the last time I was in the grocery store (part of that is Kraemer, too – thanks, honey, for always being the one to run the errand!) I know some of you have been in this position before too and some of you have taken cues from others to know how to help, and I hope you all know that you have helped immensely, and we are so grateful. On top of making our lives easier, all your calls, emails, texts, cards and gifts help us remember what amazing family and friends we have, and that we're not in this alone. Thanks for all the love. :)

Friday, July 12, 2013

The Honeymoon Comes to an End.

The PDA closed a little more. So it went from unmeasured (but big enough they could hear the murmur easily), to 2 mm (and evidence of improvement via the shrunken aorta/ventricle) ... to 1 mm today. So, they decided they still would not start the next treatment of meds and will continue to watch his vitals. The reason they want to avoid administering the meds again if possible is because the medicine constricts the blood flow from the rest of his organs as well, which is why they stop the feedings, and it makes his digestive system more susceptible to infection. The doctor still caveated the news of the shrinkage by telling us that it still may not close all the way on its own and that it could, in fact, expand again, possibly even to bigger than it was before. But we'll take the 1 mm improvement for now.

He is still up on his respirator. Dr. Lim told us that the honeymoon period is clearly over, and that the way Calder is responding is telling us that he is going to need help breathing for a very long time. She didn't really qualify very long time for us, but reading between the lines it sounded to me like he'll need help the whole time he's in the NICU and may need it once he comes home, too.


He got his PICC (peripherally inserted central catheter), and they took one of the lines (UVC) out of his umbilical cord. They'd said stuff could go through his umbilical cord for only about 1.5 weeks. Inserting the PICC is a delicate procedure because it needs to run so close to the heart. They think he lost more blood than they wanted him to when they made the switch, so he received a blood transfusion tonight.

They also gave him a second dose of the diuretic and will continue to do so. Of course, the doctor we saw tonight told us she is thinking now perhaps that his weight gain may actually be of the "good" variety and not just water weight (so on the way home Kraemer and I mused about why they were still giving him the diuretic -- we don't know.) I think he's currently at 720 or 740 grams.

They did, however, stop feeding him today for a long while because of the PICC insertion and because of the blood transfusion. But they'll resume feeding overnight.

Thursday, July 11, 2013

Patience is a Virtue.

The PDA that won't go away!! Last night Dr. Goldberg told us that the hole had not closed. It's now 2 mm, which is still too big to be okay. They weren't sure how much improvement there had been though because the cardiologist hadn't measured the hole the first time ... not clear why; I think it was an oversight. At any rate, they did see evidence of movement in the right direction, as the left aorta/ventricle had been enlarged but has since shrunk to a more normal size. Given that progress, they decided last night they'd give the hole another day to see whether it'd close more on its own.



We called this morning and it seems that his blood gases are continuing to trend in a negative direction, meaning they believe the hole to still be large enough to be negatively affecting his lungs. (Blood gases are when they draw blood and check its oxygen and carbon dioxide levels, among other things, to see how well the lungs are working.) The nurse said because of this, they would probably go ahead and give him the next round of indomethacin (another dose per day for three days), but they've told us that round two is not likely to be as effective as round one. This could mean surgery. (I've also read that another medical procedure can be used to avoid surgery, but we haven't questioned the doc yet about whether that would be a good option for Calder.) However, his lungs seem to be his biggest hurdle at this point, so I'm anxious for them to get this vessel closed off so that his heart and lungs can grow stronger with the kind of blood they need!

In other, better news, he took well to his feeding. Of course, they'll quit again should they begin the next dose of meds, but to the breast milk they fed him in between, his little gut handled it quite well.

They also think his bilirubin levels are low enough now to go lightless, so he is no longer lit with that beautiful blue glow. Another positive development.

They are still pulling up some mucous when they suction him through his mouth but say that the amount they're getting is normal.

He’s gained a substantial amount of weight (was it 100 grams in a night?), but because the doctors suspect it is water weight gain, and he’s looking kind of puffy, they are administering a diuretic.

Yesterday Calder also got to meet Getch, his grandma on the Lovelace side. Per usual, he put on a show to try to impress and broke out some of his favorite moves.

Tuesday, July 9, 2013

Another Day, Another Update.

They wound up doing the head scan last night rather than today, so they already had the results back tonight when we went in (we were expecting them tomorrow night). We didn't get to talk to a doctor, but the nurse said the scan results were normal. What a relief!! Such good news. I thought I was going to be fretting all day tomorrow waiting for the results to come back, and here I get to find out good news early! I would like to talk with a doctor to find out just how good this news is (I feel like nothing is ever for certain with NICU babies) but for now am allowing myself to be totally elated.
video

The results I thought I'd get from the echo on his PDA were the results that weren't in yet. They said they gave the last dose so late in the day that they decided to give the meds some more time to work their magic before doing an official check up on whether or not it worked.

In the meantime, though, after waiting x number of hours after his last dose, they resumed the trophic feeds using breast milk. Although he's been tolerating the feeds relatively well (digesting all of one feed, most of another) last week, this will be his first feed since the meds.

He's apparently a star pee-er and is pooing pretty well, too. Excrement may be an awkward thing to applaud, but I'll take it.

Before we left tonight, the nurse with Calder, Tammi, also noted that she had suctioned a good bit of slightly colored mucus from him today. She didn't draw any conclusions for us, but she didn't exactly have to - he could be getting sick. That would be a no-good development for sure, so we're hoping that his little body can fight off whatever infection may be sneaking around in there right away.

We didn't get any new photos of his big blue (okay, that's a guess) eyes because he had his sunglasses back on, and the nurse requested that we keep the doors closed to minimize the noise (she was about to do a gas and a suction and would have the doors open for awhile), so we will have to try again tomorrow to capture that new development.

He went down one PPU on the respirator, so he's at 21. His oxygen was still high, though. One step at a time.

Monday, July 8, 2013

I See You!!

This afternoon he received his third and final dose of the indomethacin, the medicine they are using to try to fix his PDA. Tomorrow sometime they will then do another echo to see whether the drugs were effective. Apparently, his PDA is rather large, and I don't know how much his vitals have improved, so although I'm hopeful, I won't be surprised if the blood vessel is still open. If it is closed, they'll start feeding him breast milk again. If it is still open, they'll try another three doses of the meds (with a last resort being surgery.)

Tomorrow is a big day because in addition to the echo they'll do the next head sonogram. We won't have those results until Wednesday.

His pressure is still (what I consider) relatively high on the respirator at 22 (though down a couple points from last night, when it was at 24). I call it high simply since he'd been down to 16 at one point. And although he is occasionally on room air, more often than not he's getting oxygen.

He is still on one light. They say his bilirubin level is at 4.2, and because he isn't feeding while being administered the indomethacin (digestion would help lessen the amount), they're keeping the light on for now. The nurse on tonight expected it to be on for a few more days.

Our visit tonight was fun because he opened his eyes! Of course, he's not really seeing us this early, but we're seeing him. :) Too early to tell or know color, since I hear it can change, although Kraemer thinks they are "light." We didn't have any cameras or cell phones on us, but we promise we'll work toward getting a photo of him soon.

Friday, July 5, 2013

The Light.


Tonight Calder is under blue photo-therapy lights...he's not really this color. The lights help diminish his bilirubin levels. Bilirubin is basically waste that should only be present at certain levels, so since the body isn't able to get rid of it, the lights do it instead. The band around his head is to keep on his little sunglasses while he soaks up some rays.

Calder was diagnosed with a patent ductus arteriorosis (PDA), which is fairly common in preemies. In short, it’s a blood vessel that’s open in the womb that should close after birth, but hasn't yet.  When open, it allows oxygen-rich blood to mix with and be diluted by oxygen-poor blood. Tiffany, one of our NICU nurses, suspected the condition based on his vitals and the doctors confirmed the diagnosis by listening for a murmur and checking it out on an echocardiogram. The first treatment option they’ll pursue is medication, one dose of indomethacin for three days; if the hole does not close, they can give round two over the course of the next three days. If the medicine doesn't lead to improvement the second time, they’ll opt for surgery. (There is another medical procedure available to treat it, but only in bigger kids.)

The nurses say the hole almost always closes with the meds, though the doctors did not (and don’t usually) express the same optimism.

They are giving him 1 cc of breast milk every several hours to test how well his gut can digest it. This is called a "trophic feed." A "trophic feed" is one that is too small to provide entirely for the infant's nutritional needs but one that has the potential to produce some positive gastrointestinal or systemic benefit. They keep the amount to a minimum in an effort to avoid necrotizing enterocolitis, an infection of the intestines. Pretty serious stuff

His first head scan came back normal. But because this one was done so soon after birth, and bleeds tend to occur in the first several days of life, they’ll do another scan next Tuesday. Bleeds become much rarer after 30 days.

Thursday, July 4, 2013

Happy Fourth!

Happy 4th! And happy discharge day. We are ready to get out of the hospital but really don’t want to leave our sweet boy. We’ll be back every day!


video

Wednesday, July 3, 2013

The NICU.

The NICU isn't nearly as scary as I thought it would be – relatively quiet, nothing too hectic, plenty of other parents cuddling their babies and nurses moving quickly but without urgency to care for the handful of babies in the room. That said, the corner with our baby is intimidating, mostly since there is a lot going on in that corner that I've never seen before, and most of it unique to that corner. In other words, none of the other babies need what ours does.






Our little one is nestled in a Giraffe, a rather sizable incubator that I can only assume caters to the smallest of smalls. Beside the incubator stands a very ominous dark-colored machine with more numbers than I care to think about and enough blinking lights to give you a headache. That’s the respirator. Behind the incubator are the monitors for his vitals, which leave you no peace, beeping regularly to tell you that his blood pressure his too high, his oxygen level too low, his heart rate has dropped, etc.






Calder's Vitals
The Jet




















We know our baby is special, but the NICU clearly thinks so too. He pretty much ALWAYS has his own nurse.


Calder reaches his new home.
The doctors told us he was doing “okay,” again, which is beginning to become a theme. They are “cautiously optimistic,” and explained that he was doing well but in his “honeymoon phase.”

It's strange to be in the hospital room, having just delivered a baby, but seemingly having no baby. My sister-in-law, based on a dear friends' advice, advised me that I should not devise or get attached to any "birth plan," as inevitably, the birth won't follow your fancy. Heck, I was so far out from having a birth plan I couldn't have had one if I wanted it. But even so, I cannot help but feel that this isn't how it's "supposed" to be. I have no baby to lay on my chest, no infant wailing beside me, no need to learn how to swaddle. BUT. In a way, I'm so thankful Calder came when he did. We were scheduled to fly to Cincinnati the day after he was born - I don't even want to think about how delivering him on a plane might have gone. And about two weeks after his birth, we were supposed to travel to Bosnia, Albania and Montenegro for 3.5 weeks, mostly for work, a little bit for pleasure. I want to think even less about how a delivery in one of those countries -- or on that plane ride -- might have gone. I am so thankful that he is upstairs, cradled in that giant Giraffe in the NICU.
Kate's homemade meal. Blows the hospital grub out of the water!

The Aftermath.

When I lived in India, I got hit by a motorcycle. I fractured my left tibial plateau (my knee), suffered some pretty serious bruising to both legs and knocked my head. This more or less relegated me to bed in the early days and left me with a face showcasing evolving hues of green, purple and yellow. Wanting to spare my parents a Skype experience that would cause them shock, I waited about two weeks to share the crazy news. That didn't go over very well.

Krist hanging at Best Buns.
This time, I knew better than to wait and, despite the fact that I knew they’d be up the rest of the night, called them around 3 am yesterday, July 2, to announce the birth of their grandson – on my mom’s birthday, no less (that one drew some tears.) We didn't talk for too long, but I’m pretty sure they packed their bags in the wee hours of the morning, loaded the car and waited by the phone until I called them again later that day. They decided to leave Cincinnati that night, spend the night in Pennsylvania, and arrive in DC by the early afternoon. My two sisters weren't far behind, and we were so relieved to see them all. :) Having the whole crew arrive just days after the birth wasn't in the original plan, but then again, what part of this was? We were so happy to have them come.

(Unsurprisingly, I thought to take ZERO photos of them while they were here; besides the fact that I'm terrible at remembering I own a camera, I was of course in a foggy state of mind.)


Meanwhile, we needed a name. Everyone would ask for his name, then appear surprised when we told them we were still working on that. Folks! We thought we had four more months to mull this one over. We were informed that if we didn't pick one ASAP, it would be “much harder” to file for his social security number and birth certificate.

I hadn't been in any hurry to pick a name until this point. Kraemer's family tends to use names within the family; his nephew is a 5th. Mine, not so much, and I leaned toward not doing so. I’d not accumulated a short list of names over time, as some friends had, and I hadn't even made it to a book or website of baby names, though they’d been suggested to me. In short, we were starting from zero.

I thought I wanted a name that captured one of our heritage, and probably a name with some meaning (I love my name to pieces but I never have a good answer when people ask me what it means.) So when my sister sent us a list of names meaning “strong” and “brave,” and our five-year-old nephew said to his mom, “If he’s Uncle Kwaemer's kid, he’s got to be tough!”, we had a direction to move in. “Calder” is Gaelic (Kraemer has Irish heritage) and means “rocky river / rough waters / stony stream,” and there are several rivers bearing this name in the UK. Besides the obvious reasons why this is appropriate, Kraemer loves the water, particularly rivers, and would live in one if he could. I know someday he’ll take his son to see his namesake.
Alexander Calder

There’s also a famous artist with the name Calder we’d admittedly overlooked until our good family friends the Darlings asked whether this was where we’d found the name, and we then realized we’d loved his exhibit in the National Gallery when we’d seen it months back. Alexander Calder is the originator of the mobile. Again, appropriate, no? We’ll need a neat one for his crib!

Lincoln, well, we just liked it, and as others have pointed out, it pays homage to our home here in DC. I also later figured out that he was born on the anniversary of the Battle of Gettysburg.


Calder Lincoln Lovelace, welcome to the world!

Tuesday, July 2, 2013

The Night We Thought We’d Come Home

Kraemer and I work together (well, worked – starting July 15 I’ll be in a new building with a new job), which I LOVE, really, I do. We were having lunch, and twice, maybe three times over the probably 25-30 minutes we sat there, I cringed in reaction to a pain in my abdomen. I was in my second trimester – I’d just hit 24 weeks that day – and thought that they were round ligament uterine pains. At the time, I thought the discomfort I was having was par for the course. Hindsight is twenty-twenty, and I’ll forever think about what might have happened differently if I could have pinpointed that pain as something other than normal.

I stayed at work. The pain was intermittent, so I didn’t think much of it. Our little “buddy” was being active, as he’d been regularly, so again, nothing seemed wrong. But by the end of the work day, I started to realize the pains were coming more often, almost regularly. Almost like labor. I ditched my plan to go to the gym, skipped the trip to CVS at Kraemer’s urging, and came home to crash on the couch while Kraemer made us dinner.

I researched the differences between true and false labor. My “contractions” were coming every four to seven minutes. They lasted from 30 seconds to a minute. They seemed to be getting worse – or were they? I wasn’t sure. But all the websites described Braxton Hicks as “mild.” These weren’t mild. The telltale differentiator is the size of your cervix – and I wasn’t about to try to figure that out for myself.

When things hadn’t improved with rest, had actually worsened, I called the midwife on call at the hospital for my practice. I hung up the first time; it was after-hours, so when the voice on the message machine told me to “dial 8 if you think you are in labor,” I hesitated. But I knew I needed to talk with someone, labor nor not, so I dialed again. When she learned I’d had a small lunch and only just had dinner, she advised I turn on the tube, drink a quart of water, let my food settle and call her back in an hour. She said dehydration could trigger BH, so while I estimated I’d had a couple liters already throughout the day, she urged I try her proposed remedy for a bit.

An hour later, things hadn’t changed. I waited 15-20 more minutes, and when the contractions kept coming, I was sure things weren’t looking good. I called back and briefed this new midwife on my situation. She told me to come in. Just in case. It was just after 9:30, and she said she’d rather see me at the hospital now than 2:30am. (And 2:30am would have been too late in more ways than one.) I had to ask her which hospital. I wasn’t expecting to need to know that information for four more months.

Kraemer wasn’t thrilled given the hour but grabbed the keys without hesitation. (Full disclosure, I pulled a similar stunt a few months earlier when I was positively CONVINCED I had a blood clot in my calf. I didn’t. But we spent several late-night hours in the ER and several hundred dollars just to be sure. (Hillary had one, why couldn’t I?!))

We made it up to Labor and Delivery by 10:15. The secretary registered me within 20 minutes and ushered me into a large room with multiple beds. I was fitted with an IV for hydration and peppered with questions (many I’d already been asked during registration) about my health and pregnancy for an hour. The nurse disappeared now and again but assured me she’d call the doctor as soon as she “had enough material” for the doctor to review.

Meanwhile, my contractions were strengthening and coming closer together. Holy moly. Every time I contracted, a number on the screen that hovered around 6 would start running up rapidly: 6, 11, 18, 36, 47; I watched for a few seconds before turning my head… no need to see how high it could go. Trying to be encouraging, or make light of the situation, Kraemer mused that labor would be even worse (he was still convinced there’d be no baby tonight.)  If this were false labor, there was no question I would be going the epidural route for true labor. I overheard the nurse outside the curtain saying into the phone my contractions were now every three minutes.

The doctor arrived. She asked me a few questions and raised her eyebrows at my response. “We need to check the cervix.” Finally! This is what I thought they’d do the minute I walked in the door.

When the doctor gasps upon looking at your body, you know all is not as it should be. Here’s where things start to get fuzzy. And confusing. There was commotion, questions about when she was called, demands that nurses call up to the NICU (the NICU? Nothing was registering with me yet.), get the neonatologist on the phone. Mags and steroids were ordered. “You have a bulging bag.” (What was that?) I was dilated 5 cm, plenty of space for a preemie. “We need to find out if the baby is breeched. We don’t deliver breeched babies naturally at this hospital; you would need a C-section.” (But I hadn’t read the C-section part in my books yet! I hadn’t taken any of the classes!) They hadn’t administered any drugs yet. They finally jabbed me with the steroids, which are intended to help a premature baby’s lungs develop after birth. But that needs to come, ideally, 24 hours prior to delivery.

The baby was head down. There was no time.

Still in disbelief of what was happening and staring at the ceiling as the nurses rolled my bed through the hallways and the automatic double-doors, I flashed to scenes in ER and Grey’s Anatomy. I couldn’t see Kraemer, but as we turned into the delivery room, I could hear him telling me weakly that I was “doing great” (I later learned he was about as close to passing out as I was – he’d just been hit with the reality that we were having this baby NOW.) My fingers began to stiffen and cramp. I couldn’t move them. “Why can’t I move my hands?” “Don’t worry about your hands. Keep breathing. Breathe through the contractions. Don’t push!” Okay.

I explained as calmly as I could that I was NOT pushing, at least not to the extent that I still felt I could control what was going on with my body. I knew they didn’t want the baby to come tonight, and neither did I, but I could recognize the reality by now and knew where that baby was. Woosh!! My water broke.

In an effort to get out of attending birthing classes, Kraemer always told me that his firemen friends told him delivery was “as easy as catching a football.” I maintain that’s not true, but let me tell you, I’m glad the doctor, the nurse, whoever the heck was on the receiving end that night, had good catching skills, because I think our little boy nearly shot across the room. It was 12:42 AM on Tuesday, July 2.

The rest of my memories consist of Kraemer at my side and our baby whisked away to a cart I couldn’t quite see on the other side of the room. The neonatologist was working calmly and quickly, and told us something about him being “okay.” They fed me a turkey sandwich – my first deli meat in months! – and showed Kraemer up to the NICU.

 

And just like that, we were parents. :)