One more cup of coffee

Adam v. Pulmonary Stenosis, Day 4

Tuesday, February 19

I hate waiting.

I wake up at 6 AM. From being cold.

In a NICU.

I ponder this for a while, wondering if somehow I'm getting sick. Who ever got cold in a NICU? But I am, and can't get back to sleep, so take a shower, and stumble out to see Adam. The nurse is about as surprised as I am to see me so early, and suggests I go get some breakfast, since the cardiologist likely won't be up right away.

Breakfast is yummy, and the coffee is even better. Portland definitely has more and better coffee than Salt Lake City. Then I sit next to Adam's incubator and wait for the cardiologist. Adam wakes eventually, and I hold him for a while, and wait some more. The NICU social worker shows up and I give her Susan's number to get the placement forms to prove we have any business being with this baby. This is the first and last conversation I have with anyone in the NICU that is different because of me being the adoptive father, which is fine. (Registration is another story.) The social worker also promises to try to get us into the Ronald McDonald House across the street.

Adam wakes up, cranky and mad, and I get to hold him. The nurse explains that the Prostaglandin drug he's on makes him irritable.

Meredith shows up. And we wait some more ...

Dr. Kyser shows up and he and a tech start setting up the ultrasound machine. While they're doing that, I mention some of the story of getting up here. He says, "They sent you in an air ambulance? Really? Wow." Now I really wonder who ordered this little trip. Since, you know, that was the part that made me think that Adam was going to die.

He starts drawing a picture explaining the basic anatomy of the heart (since I remember approximately none of it) and what Adam's problem is specifically. Adam's pulmonary valve isn't opening enough. In fact, it's only opening about 10% as much as it's supposed to. That tiny opening that the pediatrician in Grants Pass referred to? This is it. It is indeed tiny, it's just that it's the pulmonary valve instead of a hole between the chambers. Turns out that makes a difference.

The echocardiogram confirms what he saw before. He wants to do a Balloon Valvuloplasty on Adam, where he puts a balloon up into the problem valve through a catheter run up from the groin, then inflate the balloon to open the valve up. If all goes well, we should be able to go home by Friday.

It's amazing what they can do these days with a catheter.

The Prostaglandin is to keep his PDA open, which is a valve that's open during fetal development that normally closes within hours or days after birth. Keeping it open lets Adam get more oxygen, and he'll need to stay on that until after the cath lab procedure, which is scheduled for noon tomorrow. So not today after all. At least that means that Adam gets to eat again.

I go out to find Nathan and Christina, and to go check out from the hotel where they spent the night before. We go to Red Robin to eat lunch, where I order a giant hamburger (protein). I think about how much I would enjoy a drink, then think about how even one beer is likely to effect me on the stunning lack of sleep I've had. I order Nathan a quesadilla after extracting a blood oath from the server that it is in no way spicy. Doesn't matter; Nathan doesn't take a bite.

We all meet up, and go register at the Ronald McDonald house. It's great. We get a private bedroom with our own bathroom, then they have common areas for the kitchen, play rooms, playground, etc. Nathan immediately starts running around like mad from excitement. How he has the energy to do this on the roughly zero calories he's had lately is beyond me. Little kids must have internal nuclear reactors.

What we got here is failure to communicate.

I wander back across the street to the hospital to actually go register young Adam at the registration desk. And soon realize that I should have had that beer after all.

Adoption is a confusing topic for registration people, it seems. Because all of this basically flowed out of his birth, his records all still have his birthmother's last name. And not Dodd. "So ... who's the father." "I am [gritting teeth]". "Is this (pointing to Grants Pass address) the baby's address?" "No, the baby's address is the same as mine." "Well ..." Then she keeps asking when J is going to come in.

On no sleep and high stress over the health of a child, the world is quickly divided into two sets: things that affect my child's health, and things that don't. If the latter, then this idiotic process is a waste of my valuable time. If the former, then this person is putting herself between me and a healthy child, therefore counting on a mere 30-some-odd years of societal pressure overruling millions of years of evolution that is suggesting a more direct approach to solving the problem.

I set the pen down that I'm fiddling with as I realize I'm starting to think of it as a weapon.

This is why Meredith is the one in seminary, and not me.

An hour or so later, we finally get through this, only because it's 5:00 PM and the registration staff wants to be able to clock out. If I'd known that was the trick, I would have shown up at 4:55.

Dude, where's my car?

While I'm at registration, some guy comes wandering in wearing a hospital bracelet. "I'm trying to find my car. I got discharged from the hospital this morning. I'm not really sure why I was here. I'm not sure how I got here -- can you look up my ID here and see how I got in? Did I walk in, or drive myself? I think maybe the police brought me in. Can you check?"

If you have no idea how you got to the hospital, but you're pretty sure that in the back of a patrol car is a reasonable explanation, you fail.

Do you mind if I take a quick look around your house? I'm afraid you may have hippies.

After leaving registration, I walk upstairs to the pediatric ward trying to see if we left Nathan's bag in the playroom. As I open the door, I hear someone playing the guitar and singing. Right outside the pediatric ward. Isn't that special?

Wait, what's he singing? Oh, it's Hotel California. And I'm just in time to hear him sing the closing verse.

You can checkout any time you like,
But you can never leave!

Wow, it's hard to imagine a better message for kids stuck in the children's hospital. I consider demonstrating Pete Townshend's guitar techniques.

Cartman is so right.

Adam: and now, the rest of the story.

Wednesday, February 20

Here comes your nineteenth nervous breakdown.

The cath lab procedure has been delayed until 3 PM because there's another baby who needs to go first. Meredith and I take turns holding Adam while we wait for him to be carted away. I say something out loud about trying to take pictures without a flash and the nurse says, "Oh, you should go ahead and use the flash. I know it startles them a bit, but you know, you'll never have a moment like this again." God, I can only hope not.

Eventually they come, and we meet the anesthesiologist. And then we follow Adam in his bed downstairs, peek inside to see the cath lab, and then they shut the doors.

And we wait.

We wait upstairs with Nathan and Christina. Nathan is playing with Christina in the 3rd floor play room, where Meredith finds the book "Adam Goes To The Operating Room".

After an hour or so, a nurse comes up to tell us that everything is going okay, and that they're putting in a second, slightly larger, balloon.

She comes up again to tell us that Adam is done, it went well, and the doctor will be up shortly to talk to us.

And we wait.

Dr. Kyser appears and says that everything went well. He gives us copies of the ultrasounds they took during the procedure (look, a balloon). He also says that Adam's right ventricle muscles are very over-developed because of having to push the blood through such a tiny opening for so long -- so over-developed that the muscle itself is constricting the blood flow out to the pulmonary valve somewhat, so he wants to keep Adam around until Monday.

We are much relieved.

Late that night, I go over to check on Adam. He's starting to come out of his anesthesia daze, so the nurse says I can feed him. It turns out that the whole eating thing is still hard for him on his drugs, and he winds up choking a bit. I'd never seen his oxygen saturation number get down to 55 before. The nurse gets him back to normal, and I later find the incident recorded in his apnea log. Scary...

Thursday, February 21

When you hear the the bell go 'bing-bong', intermission has begun / And when you hear another 'bing-bong' then intermission's done.

 
"... So I looked and felt my best
when I went in that morning."

Christina goes home in the morning, and we have a mostly uneventful day. Since we're now stuck here until Monday, Melissa is flying out tonight to help watch Nathan.

Adam is still on his prostaglandin. Prostaglandin is like the reverse of ibuprofen. Where ibuprofen reduces inflammation, prostaglandin inflames basically everything. So he's swollen, feverish, and generally pissed-off at the world. On the bright side, it keeps his fetal heart valve (Ductus Arteriosus) open, so that he can have oxygen. So, you know, that's probably a good trade.

Nathan would like to be home. Meredith finds him playing with a family of trucks. The kid trucks are mad at their parents for taking them away from home. The kid trucks begin running into the mom and dad trucks over and over again. Eventually the kid trucks fly home on an airplane. I wonder if we should find a child psychologist to help us determine if their is some hidden meaning we might divine from Nathan's play.

My Uncle Steve and Aunt Sue come up from Salem. They get to see Adam, but Adam is sound asleep for their visit. We all go out to dinner at McMenamins after Nathan announces that he wants a cheeseburger. After waiting for a long time for our food, Steve asks the waitress about it. She replies, "There's nothing I can do -- it's dinner time, you know." Oh, hey, she's right. I knew there was a reason I was hungry. At least the food and beer, once they eventually arrive, are good.

As we proceed to tell the story of Adam's Hospital Massacre, with full orchestration and five part harmony and stuff like that, Steve laughs at the tale of the air ambulance surprising the cardiologist, and says that sounds like a decision that a lawyer, not a doctor, made. His guess was that either the Medford or Grants Pass hospitals realized they should have caught this sooner, so wanted to get Adam out of their hands and into Legacy Emanuel's as fast as possible. Sure enough, later, when I'm looking through Adam's voluminous medical file, the air ambulance order appears to have come from the Medford hospital. Well, I'm sure that only took a few years off my life in terror. No biggie...

I put Nathan to bed, and Meredith finds that Adam's umbilical cord has fallen off, and his oxygen numbers are doing great. She picks Melissa up. All is going well.

Friday, February 22

Get used to disappointment.

Adam goes off his prostaglandin in the morning and the nurses remove his IVs.

And ... throughout the day, his oxygen numbers get lower. And lower. Until they're in the low 80s. Below 80 is when you start being able to see blue. And his temperature is a bit on the chilly side ... like about 95.6 degrees. While wearing a hat. And clothes. And two blankets and a quilt. And snuggled up against me. The nurse puts him back in his $33,000 bed and turns the heat on.

Dr. Kyser shows up and looks at his heart. Adam's gigantic right heart muscle is constricting the blood flow to the lungs too much, which is why his numbers are getting so much worse. Time to go back on the prostaglandin for a few more days. He says the earliest now for us to go home is probably Wednesday.

It takes the nurses almost an hour to get an IV back in poor Adam. They eventually end up putting it in his skull. The nurse has to shave part of his head for this, thus getting us Adam's first hair clippings at the age of six days.

We are sad.

Melissa extends her trip so that she's flying back on the red-eye Tuesday night.

Monday, February 25

With your feet in the air and your head on the ground / Try this trick and spin it, yeah.

The prostaglandin drip is shut off at 6 AM. The nurses are keeping the IV practically glued to Adam's head in case they need it back. By lunch, his numbers don't look that great -- mostly around 85-86.

I read through Adam's 3-ring-binder that's kept at his bedside. It's full of every doctor's orders, daily notes, and just about everything else you could imagine. I start to look quizzically at one page in the very front. The nurse leans over to see what I'm looking at. "Oh, that's the quick reference chart in case we have to revive him. It shows all the dosages and settings we'd need to use for the medicines and machines." Right. Turning the page now... It's good to be prepared, I suppose.

Meredith and I have an infant CPR class in the NICU from 1-4. We are one of three couples. One other couple has a preemie and are obviously interested in being there. The other couple could not make their desire to not be there any more obvious. We wonder why on earth they have to go. And hope that nothing is ever wrong, since by the end of the class they have a perfect record -- they managed to screw up every single chance to practice on the mannequins.

The class has a video, which includes three 'what would you do' scenarios. Two are reasonable (baby stops breathing in restaurant, baby stops breathing for babysitter in a house). The third scenario opens showing the baby sleeping face-down, wearing only a diaper, lying on a towel on a concrete slab, in the burning sun, about twelve inches away from the edge of a swimming pool, and Dad finds baby not breathing. What would you do in this situation? "Call 911 and then kick Dad in the face?" Or is that the other way around? Seriously, was this one included for comic relief?

After class, the instructor goes to each bedside to help us find where we would place our fingers for CPR on our babies, and has us practice moving the baby from facing down to up for doing the back blows and chest thrusts for choking. The practice is somewhat silly, as your typical baby doesn't have a cluster of five or so wires coming off of them that you have to watch when moving around.

Dr. Kyser shows up, does another echocardiogram, and says that Adam is actually doing much better than before. He still thinks we can go home soon.

Tuesday, February 26

You rush a miracle man, you get rotten miracles.

Adam's oxygen saturation numbers continue to look ok. Adam also continues to be cold. His temperature is wildly varying, but is always less than normal. The nurses spend a lot of time putting him under the heat lamps, then turning the lamps off when he starts sweating and thus cooling back off. Then swaddling, unswaddling, back to the lamps... Adam's thermostat is somewhat messed up.

The cardiologist is still happy, but now the neonatologist says that Adam needs to have a stable temperature and be warmer before she'll release him. Bah.

They do a "car seat challenge" with Adam in the morning. Strap him into the car seat with all of his monitoring equipment on and see how he does in that position. They're worried because his numbers started to fall off after being in it for an hour and a half, and it's a three hour drive for us to go home. I look somewhat blankly at the nurse and point out that it's not like we can't stop on the drive. "Oh, I thought you said you were going to drive straight through?" I meant without stopping for the night. How on earth am I going to drive 3 - 3 1/2 hours without stopping with a newborn and a 3-year-old? Sheez.

On the plus side, Adam is moved from the intensive care half of the NICU to the 'intermediate care' half. It's the same, except that the ratio of patient : nurse is 3 or 4 to 1 in this half instead of no more than 2:1 in the intensive half. And we walk into a different door now. We even get one of our favorite nurses, who's working in the intermediate half tonight.

Wednesday, February 27

Well I ain't seen my baby since I don't know when...

Adam's temperature has remained stable, if on the cold side (97.7 deg F) and he's been off the heat lamps since 8 PM the night before? Can we go home now?

No.

ARGGH. The neonatologist wants to keep him longer to make sure he's going to remain at a constant temperature before we go home. Tomorrow morning, she says.

Adam is clearly feeling much better for being off the prostaglandin. It's like having a different kid.

We fiddle our thumbs for another day, taking turns swapping between Adam and Nathan.

Thursday, February 28

I'm free, I'm free / And freedom tastes of reality / I'm free, I'm free / And I'm waiting for you to follow me

We get up and call over. No doctor yet, but the nurse says that Adam's temperature is holding steady. Thinking optimistically, we start going through the checkout steps at Ronald McDonald (washing all the towels, sheets, blankets, cleaning the bathroom, vacuuming, etc.). I resist the urge to throw other people's laundry out of the washing machines so that I can get ours done faster.

After breakfast, I walk over and find discharge paperwork sitting on Adam's cart. Hallelujah.

They need the paperwork to finish his PKU test before we can go, so I run across the street to grab that. And we do a lot more laundry and cleaning.

Finally, we all get in the car, and head over to get Adam. Despite the fact that we are literally across the street, and will have to go right back to Ronald McDonald to finish cleaning and loading before we can head home, the process requires that we park our car at the main entrance (with its '5 minute parking' signs) so the nurse can watch us load Adam into the car in his car seat. I run upstairs. The nurse comments that Adam is getting hungry. "Well, I can feed him as soon as we get across the street." No, I guess I'm going to feed him now. It turns out that this is a good idea, since the nurse reading over the discharge instructions takes a while. A long while.

The discharge instructions, which are basically on how to care for a newborn, include the helpful note that if we want a dark room during nap time, close the blinds and turn out the light.

I am not making this up.

The nurse manages to read this perfectly seriously, as though this isn't actually obvious to anyone with at least the understanding of my 3-year-old.

Eventually we get to go downstairs. It's been just about an hour since I went up. It's the first time Nathan has seen Adam in ten days.

Since it's been an hour, now everyone else needs lunch. So back to Ronald McDonald to finish getting laundry out, check out, and eat lunch. And get back in the car.

We stop twice on the way back to give Adam a break and to feed him, and get into Kirkland at about 6 PM -- just in time to go to Coyote Creek for pizza before going to our house.

We're finally home.

Theology lessons from a three-year-old

Nathan: "God loves me and helps me. And protects me from guards, horses, and zebras. Because sometimes they kick."

Truly, God is great.

Guess the amount

Want to play a guessing game? In comments, leave your guess as to the total bill from Legacy Emanuel Hospital for Adam's 10 days in the NICU, including air ambulance ride. You're guessing the amount billed, not the always-lower amount the insurance actually deigns to pay.

Bonus points for also guessing how much the air ambulance by itself costs.

(No, I don't know yet. The bills haven't gotten to the insurance company yet.)

Protective big-brother to the rescue

(while I was burping Adam...)

Nathan, running over: "Daddy, you patting Adam too hard. That why he crying, Daddy. Here, I show you."

(Nathan proceeds to pat Adam as gently as can be on the back.)

The problem of sleep

I remember the part about waking up every 3-4 hours in the middle of the night to feed a newborn. I was prepared for that. The part I hadn't factored in was how much less sleep you get with two kids.

Nathan goes to sleep in his own room, but still wakes up most nights and comes into our room. Nathan has a hard time telling the difference between baby cries and just normal noises, so every time Adam stirs, Nathan wants to check on him. If Adam then wakes up to be fed, Nathan can easily stay awake for the entire time because it's so interesting to him.

On top of that, Adam needs his heart medication every eight hours, which means that we're waking up at 6 in the morning to give him a dose.

With all that, it's fairly typical now to be woken up four times in the night -- two night feedings, one time for Nathan to come into the room, and one time to give Adam medicine.

So we are all sleepy. Except Adam, I suppose -- he's the only one of us getting lots of sleep.