Been a While

right? Griffin is home now, and he's gained almost 12 ounces since we left the NICU. The doc is happy, Griffin is happy, and we are all very... tired.

Juggling all the normal life chores and the added newborn bottle and swaddle routine every three hours is proving to be a bit tricky. We have to keep a log of every single feed we give to the wee man - not that we are worried about his eating habits, but we might just up and forget when he last ate.

The 3 AM meal I can take, but his occasional indigestion at 4 AM and then again at 5 AM is a bit rough on the wife and me. Simethicone to the rescue! If that doesn't improve things, then we'll try gripe water next.

But this natter is not why you came. You want pix. Okay.

Yes! No! Well, maybe.

Griffin should be home by tomorrow! We shouldn't expect Griffin's homecoming before Sunday if he continues to struggle with feeding. Griffin ate 47 mL of milk at a go! Griffin is only eating 25 mL at a time. Every visit brings us closer to being a family again, except when it doesn't.

His Smallness is confusing the nursing staff, that's all I can assume. Over the past few days each successive nurse has contradicted the previous one and used Griffin's chart data to justify their optimism/pessimism.

This morning, our resident doctor assured us that Griffin was doing everything right and we were to expect an early homecoming. At the early afternoon feeding, S was told that the little guy was simply not eating like a full-term baby and this was a sign that he was not ready. This evening session, we were told that his appetite was fine and there shouldn't be any reason to keep him past the morning rounds. I am beginning to think that they just make this stuff up.

I also think that Griffin is a bit mercurial. He is not really interested in arbitrary expectations, and he isn't going to fit inside your convenient little box (unless it's a shoebox; he's pretty small). Maybe he just isn't hungry every three hours like clockwork. Maybe being slightly off normal is normal. Just like his dad.

Just Like a Normal Baby

Yesterday, due to the snow, we only made it to two feedings (9AM and 9PM). In between, the doctor called and said that he was doing so well with his line removed, they wanted him to start breastfeeding and getting a supplement bottle after that. This sounded like great news, but after the nursing debacle of the other day, I was terrified.

He did great. He nursed like a pro on one side and nursed like a sleepy pro on the other side, then took only a few mL from his bottle. It was fun to watch his heart rate zoom up when he started nursing, then drop as he became fuller and sleepier. I need to get more confident in his ability to feed himself, because I was nervous about ending the feeding, in case he hadn't had enough and his glucose dropped and he got put back on the IV.

The nurse--one we hadn't met before--was pleased, and seemed optimistic about what we'd find in the morning. She left us, however, by saying that usually babies need another week in NICU after their lines are removed.

A week. We'd been thinking a few days. A week.

Back again this morning for the 9AM. Overnight, his glucose levels were steady and high enough. His doctor was very pleased, pleased enough to graduate him from an isolette to an open crib. The goal, she said, from here on, is to treat him just like a normal baby. His job is to communicate when he's hungry, eat well, and regulate his body temperature. If he does that, he can come home.

I asked about what last night's nurse said. A week?, she said, anything is possible, but assuming he does what he should, he could go home tomorrow, or possibly Friday. So even if he needs a bit longer, you're likely looking at having a baby home by the weekend.

Happy Valentine's Day, says Mark.

He nursed well again on both sides, took 15 mL from his bottle, then the nurse wheeled in his crib and took his bedding out of the isolette. We lay him in and kissed his head, something we hadn't been able to do since he started living in a breadbox. He promptly urped due to an unburped burp. We changed his clothes, his diaper, and the bandage on his heel (which he'd stuck into his full diaper)--just like a normal baby.

Live without a Net

Just made it in to see the wee man this morning. Snow made the road treacherous, and the weather is not improving. S and I are wondering if that is the last visit we make today. Snowed in.

Griffin had his umbilical IV removed last night, and he is running entirely on the food he eats. Glucose levels were slightly lower than desired, and he ate slightly less than the goal of 40 ml this morning, but I couldn't be more happy. He's got two major hurdles left: keeping the glucose levels up, and keeping his temperature up as well. C'mon buddy, you can do it!

If he clears these, then he will be home as soon as Thursday. Wish us luck.

Jiggety-Jig

We're home.

Last night, after the 6PM feeding (which actually starts at 5:15), we kissed our boy's soft head, piled our souvenirs from this strange vacation into the car, and headed for home in a similar condition to how we arrived.

With my daughter, I arrived at the hospital on a night of witchy weather, in full-blown labor, had a baby just three hours later, and left after a couple of days with my little girl in the back seat. This time, I went to the hospital without even a twinge of pain and everything happened--blizzards, contractions, surgery, birth--while we were cocooned there. Days later, in just enough of a soft druggy haze to give a Vaseline-smear effect to everything, I came home to a warm dinner in a clean house, dry roads, and with an empty car seat in back. I might as well have been out running errands.

Every kid who has come home from college, a summer abroad, or even a lost weekend knows the feeling of no longer quite fitting into the space they left behind. It couldn't be much easier for me here: my daughter and pets are overjoyed to see me, my stepmother is keeping everything running brilliantly, friends are helpful and supportive, but it's all strange.

I don't miss the hospital, certainly, but the hospital existed to house Griffin. I saw his face as I walked to the bathroom and could smell him on my clothes. This house doesn't know him and has no memory of him. Even his room hasn't had to make space for him yet, doesn't have to acknowledge that he exists. There was no chance of forgetting Kendall while we were at the hospital, but what if we forget Griffin while we're home?

Four times a day, we will climb into the car and head back there. We've gone once already and I was relieved that I didn't just dream the last few days. He's there; the nurses recognized us--clearly this happened. We held him, fed him, smelled his head, and tickled his philtrum to make him squint his eyes, purse his lips, and turn away. And then we left again, back out in the bright, cold day.

Mistakes were Made

This morning confirmed our discoveries last night. We were informed by the pediatrician on staff that there was nothing in Griffin's chart that allowed for breastfeeding. She explicitly told us that this was counter to their need for accurate measurement of fluid intake, and that she had "no idea" how that could have been misinterpreted.

So much for the bad news, now on to the good news. Griffin is eating well (23 ml this AM), his glucose levels are back to a good level, and he is perking up during lunch. All this implies progress, and the prognosis has not changed: complete recovery expected. The date of his release did shift to possibly Thursday next, and that's somewhat annoying, but we are still very lucky to have the best care for our little bean.

Shift Change

There is nothing quite as maddening as being a Cassandra in a room filled with optimists. Especially if you let yourself be convinced.

This afternoon went well enough, but we were not really on the best of terms with our assigned nurse. Perhaps that was due to my telling her, frankly, that my wife and I "look tired" because we are worried about the wee man's dining habits, and that using the former as an excuse for not telling us about the upgrade to the latter was a bit counterproductive.

She solved that miscommunication by trying not to communicate anything at all from there on out. We got to participate in two good feedings with S starting the show and a bottle of expressed milk to follow. By the second feeding, S was starting to worry that the reliance on breast feeding was going to make hash out of their carefully calibrated balance between the ingested food and the glucose IV. The nurse assured us that the glucose readings were all that was necessary to maintain an even keel. Then she disappeared until we were ready to leave the NICU.

Fast forward to shift change, when the night nurse informed us that they were only going to let us feed Griffin by bottle, and we were to try for exactly 15 ml of expressed milk. His glucose readings, which had been holding steady at 60 plus or minus, at 8:30 PM dropped down to a 51. Then, three hours later, they measured in at 114. Hash, anyone?

Small Miracles

Thank goodness for them, right? We just returned from feeding our small peanut -- that's right, campers. Griffin is eating again, and his appetite has increased greatly since we first started. S got a chance to nurse him directly, and that made all these past three days just melt away.

After a solid ten minutes of that, it was time for me to try and get him to eat some from a bottle (no formula, thankfully -- S has been busy), but his complete pass-outedness was a bit of a hindrance. Still, I managed to squeeze in another 10 ml of mother's milk before calling the game on account of sleep.

Of course, nothing is without controversy. This was his third feeding today, and yet this was only the first one we were invited to attend. S about lost it again when they told her that "she looked a bit tired," and didn't want to bother her with the one thing she has been aching to do since we got here.

Sometimes I am surprised at the incredulity we face in the staff here. Don't get me wrong; they are all dedicated and talented professionals. I just wish they would assume the same level of dedication from us, the parents.

No news is...just that

This morning we went down as soon as the NICU opened at 7:30. A nurse we hadn't met before was hovering over G's isolette, getting acquainted, as she said. We ran over our mental list of updates, checking to see if new information was available on his wet diaper output, cultures (showing infection), head X-ray, permission to eat, and glucose levels (yes, no, no, no, no).

Although he's clearly showing signs of wanting to eat, he won't get permission to do so until scheduled rounds at 10AM. The NICU is closed from 10 until noon, and his earliest feeding after that is 1:15, so even though he is smacking his lips and gets rather annoyed as soon as he smells me, we can't do anything about it until this afternoon. So we gave him the hospital-approved binkie.

It was quiet in the NICU, there wasn't the usual bustle of doctors, nurses, and other parents. Griffin's nurse, although nice, couldn't answer most of our questions, although she kept looking valiantly through his paperwork, hoping to find answers. She took her best guesses--she guessed he'd get to eat today, she guessed he'd be taken off the IV in a day or two, she guessed he was done with the bili-lights, she guessed they'd repeat the head and kidney scans, she guessed--wait, what?

Although they didn't find anything on his kidney scan, his creatinine levels are still high, so they'll want to repeat them. (This is where M and I differ--he's not worried, but when a door that I had mentally closed has to be reopened, I worry.)

Mostly, she couldn't tell us any answers, and I felt myself starting to get panicky. So M changed the tiniest of diapers, sticking his hands through the holes in the isolette. The nurse taped his cords so an accidental pull wouldn't cause him bleed out through his belly button, and handed us our small boy on a pillow. We watched his mouth open and shut like a baby bird's and when guilt got the better of us, we went off to have breakfast.

Winter Advisory

It is late. We have returned from our late-night visit with G and things are... good enough. He shows all the signs of improvement that the doctors were hoping to see. His glucose levels have stabilized; his test numbers are all trending positive; his kidney scan was given the all clear.

He is still in his isolette, and we still cannot feed him yet, but that may change by tomorrow noon. We are hopeful.

I find that I am exhausted. Not just from the long hours and emotional grindstone, but from all the effort spent becoming a lay expert on neonatal care within the span of a single day. All this effort to find that Griffin was a bit on the small side and came into this world a little early. That's what went wrong - that's what this is. The isolette is just a substitute womb, a halfway-house for the small and bald. The umbilical IV is a new cord. And this time, when he is borne from the isolette and pronounced healthy by the attending doctor, there will be a well-rested set of parents to welcome him.

A Rude Awakening

This morning was the latest in a series of upsets. To start, I awoke some time around 5 AM to the sounds of a doctor standing in the dark room and expounding on a number of logical steps that had been taken overnight. I was, I admit, not at my best just then so I do not recall exactly what was said. What I do remember is that it all sounded complicated.

We got up to do the 7:30 AM feeding as normal, except that I stayed behind to get our previously pumped breast milk from the nurse. When I got to the NICU... words alone cannot describe the heartache. S was sobbing fat silent tears and looking at Griffin, who was on a heating table with now seven different tubes and wires connecting his tiny body to a number of monitors, IV bags and whatnot. The first shock was the tube that was inserted directly into his umbilicus. The second followed almost immediately after the first: S looked to me, with tears in her eyes, and told me that we were no longer allowed to feed him.

A long conversation ensued, and the short version is this: Griffin was getting too much saline with his glucose. He was also not passing on this liquid, which implied a problem with his kidneys. They were taking every precaution with him, and so he got a number of alterations to his care:
1) Glucose in a more viscous form, which necessitated the umbilical IV.
2) No food by mouth, since he was overly hydrated.
3) A mild diuretic to help purge the tissues of all this saline.
4) An Isolette. You know what this is - the Japanese Economy Hotel for babies? My son was the boy in the bubble. Insert lame John Travolta joke here.
5) Tests, tests, tests! An ultrasound test for kidney malformation (not likely, but a real possibility, we were informed), one for liver function (checking for Jaundice), one for protein levels (creatinine), one for electrolytes (sodium), and the ever-present glucose test. Most of these involve getting a blood sample. Our visits to the NICU now consist of carefully holding his bundled form on a pillow.

Although things have improved since then, this morning was crap. I wasn't bothered by the tests, nor by the bubble (although it was a rude shock) - it was the feeling that we were aiming at a moving target. All day I have had this odd feeling that the moment I got comfortable with this new routine, the game would change again. Some doctor would raise concern about his strontium levels, or decide it was of paramount importance to reduce his exposure to halitosis.

The Story so Far (pt 3)

Thursday started with a ray of hope. Wednesday night we visited with him and talked with the NICU pediatrician. The short version goes like this: Griffin needs to maintain his glucose levels to stay warm and avoid brain-damage. They have him on a steady IV drip that releases enough glucose to keep his levels in the safe range. Feeding him requires careful measurement: they balance the amount consumed with the amount of glucose in the feed, and if we can get him to eat 30 ml of formula or breast milk every three hours then he can come off of the IV altogether.

We slept through the 7:15 AM feeding, and the 10:15 AM feeding was off-limits. Apparently, the 10 AM hour is when the entire shift discusses each case in turn, and our presence during this talk would violate federal law. So we went to feed him at 1:15 PM, 4:15 PM, 7:30PM and 10:15 PM.

These four visits went really well. He was getting better at breastfeeding, and he was able to eat 10 ml of formula at a go. This was the progress we had hoped for, and the promise of a Saturday release kept us buoyant for much of the day. We got into a groove with the visits: I tickled his nose with my beard, S tested his branch-grabbing instinct.

The feedings were not without issue; sometimes we were allowed to breastfeed first, and other times not until 10 ml of formula was packed into him. He wasn't always interested in formula, and his appetite would wax and wane. They adjusted his glucose drip rate down one feeding, only to bump it back up the next. Still, we had confidence that we were slowly but surely working our way out of the NICU and back into our arms where he belongs.

How silly of us to think it was going to be that easy.

The Story so Far (pt 2)

Okay, so the wee bean was taken to the NICU on Wednesday for a glucose IV and a chance to warm up. That's the short version of that story. Here is a slightly longer version:

We were working with the lactation consultant on techniques. I say "we" like I had anything to do besides wander around the room and feel slightly uncomfortable. Immaterial - moving on. Griffin had managed to latch onto Susan and things were progressing apace when S decided she could not wait any longer and went to the lavatory. So, seven minutes of breastfeeding, followed by a short break. During the break, our nurse walked in to check G's glucose levels again. She asked if he had been fed recently, and I informed her that we were in the middle of same. She asked us to stop there and she would return in 15 minutes to get a reading.

She returned after 30 minutes, pricked his foot (by this time, he would start to cry at the act of touching his sock - B.F. Skinner had a lot to say about this kind of thing), and once again his blood-sugar came up low. She whisked him to the nursery right away for bottle-feeding. She stopped his feeding so that she could feed him - you with me here?

That feeding went poorly, but we weren't to know. It was only when S finally got on her feet for a walk down the hall (her first such stroll since the c-section) when we got a glimpse of the NICU specialist nurses attempting to feed the wee bean via bottle. We got to see him spit up all over one of them. We chuckled and went back to our room.

Later that day, we started to wonder if we were ever going to get our son back, so we called the nurse. This was when we were informed that he was being transported to the NICU, that his body temp had dropped precipitously, that he was not able to eat.

Susan lost it. Within minutes we had a lengthy parade of medical professionals coming into our room: nurses, pediatricians, NICU nurses and NICU doctors all in order came in and got what-for from my dear wife, who only seems meek to the casual observer.

Pro Tip: do NOT tell her that "the brain needs glucose to function." I don't know if I could stop her from taking a swing at you.

The medical staff were very nice and rather apologetic, so there's that. They did realize that they should have consulted with us at a higher level than what we got at the time. We also got a full explanation of their reasoning, and it goes without saying that it is a necessary and proper thing they did. I wanted to shout at them for taking our baby away from his feeding to feed him, but they were looking at a whole string of low blood-sugar readings (seven separate measurements across the morning and early afternoon). The scientific method demands measurable inputs and outputs, and his food intake was a big unknown for them.

Bright side: I don't think they will forget to update us ever again.

Modern Medicine

I am a big fan of modern medicine. I know that scientific methodology is inherently grounded in the real. I know this. And, after talking to several pediatricians, nurses, our doula, and all that, I know that what is happening to Griffin right now is appropriate. It is a conservative and measured attempt to ensure the best of outcomes and to prevent any bad outcome from getting a toehold. I also know that he is stable and warm, with all needs met by expert nurses who never leave the room.

But, as a father, I have to say that the NICU scares the crap out of me. Griffin is tethered to his monitors by a bundle of hoses and wires. These monitors have a tendency to sound the alarm whenever I pick him up because I have undoubtedly crimped a hose or knocked a sensor loose from G's small form. He gets his nutrition from a tube, his warmth from a heating lamp, his comfort from the brief visits we are able to make. (The NICU is on another floor, and S is still struggling with mobility; at least she is finally free from her IV.)

Modern Medicine may be the difference between a healthy son and a tragedy. I'll take the healthy baby, thank you. But I hate this. I have a wealth of fatherly skills and techniques that have been marginalized by machines and protocols. I do not know how to father from a distance.

The Story so Far (pt 1)

To be precise, Griffin was not entirely ready to be born. Susan was told by her OB during a cursory exam on Tuesday that she was going to be induced that very day. We were at the hospital by 6 PM. After inducement was attempted twice, the plan was changed again to deliver via cesarean section. This was well outside of our original birth plan, but the occasion demanded it. Griffin was not ready to be born, and yet for health reasons he could not remain in utero.

You see, Griffin is kinda small. The amniotic fluid levels were lower than what is considered healthy, and the placenta had started to calcify. He was not growing any more, and there was a risk of miscarriage. So Griffin came into this world through the side door, just seventeen minutes past midnight on February 3rd. He weighed 5 pounds, 2 ounces. He was eighteen inches in length. He was also quite a rich shade of lavender-blue. (He did pink up a bit once he found his breath.) We spent our first few hours in the post-OR recovery room, and then moved up a floor to the Mothers and Infants section of the hospital. Well, I moved. S was moved by professionals, as it is not a good idea to test the surgical staples so early in the recovery process. We got settled into our room by 3:30 AM.

Later that morning, we awoke to get acclimated to life with a Griffin. He is remarkably affable for a newborn. Doesn't fuss overmuch. Sleeps a lot. The nurse would come in every few hours, measure a few vitals, ask how we were doing, and move on. The lactation consultant gave Susan a few pointers. Mostly, we just held our boy and napped.

The problems started that afternoon. The nurse kept checking his glucose levels and tut-tutting under her breath. A glucose level of 50 or higher is considered healthy, and Griffin kept scoring in the low 40s. By three PM, she had seen enough. She contacted the nurse team from the Neonatal Intensive Care Unit (or NICU, for short) to administer to his feeding.

FYI: A NICU nurse is to a nurse what a SWAT officer is to a policeman. They are awesome. They attempted to feed the wee bean and were also unsatisfied with the results. Then, his body temperature dropped to 94. He was taken directly to the NICU for closer evaluation and a glucose IV. That was at 5 PM on February 3rd. He has been in the NICU ever since.