Halloween Day

I had a great visit with Julian after Shabbat dinner tonight. I flipped him over, changed his diaper and took his temperature. He was wide awake the whole time and seemed ok with all this fussing over him.

Joy didn't visit today, she has some cold symptoms.

All the while, Gigi recovered from herillness quickly. The incentives were just too high: dress up like a ballerina princess, get candy, and go to a party.

4th Shabbat & Happy Halloween

Julian extended his unremarkable, mildly positive run to 3 days. He grew 15g and is still on high-flow, requiring just a bit more than room air concentration of oxygen. No interesting events. All good news.

I didn't visit him yesterday since I was feeling little unwell. Joy and Joy's brother who arrived at noon checked on him in the afternoon. My mom left yesterday.

Gigi, not one to stay out of the action, decided to wake us up at 1am with her barking seal noises, struggling to breathe. How did we avoid croup until now? We were about 3 minutes from visiting our favorite home-away-from-home, the hospital, but she settled down after an hour of steaming her and sitting outside discussing the falling leaves. After she settled down we move her mattress into our room. Apparently, this meant sleepover party for Gigi at 2:30am.

day 19 & 20: 2 lbs!

Perhaps, as a sign of stability, we can combined 2 days into 1.

On Wednesday very little happened. He slept, he required about 21-25% oxygen on high flow nasal prongs. He's eating fine. Apparently he had a poop blowout. I'm guessing that was like 5ml for him :-).

His food requirement went up to 5.6 ml/h in accordance with his weigh. The formula is 150ml/kg/day. Technically this may be his "fluids" maximum into which they want to make sure there's sufficient caloric density. To calculate his hourly amount of fluid you take 150ml/kg/day * 892g * 1kg / 1000g * 1day / 24hr = ~5.6ml/h. But I digress, since I don't understand this.

By Thursday morning, he gained enough weight to cross the "magic" 2lb mark - you know 908g.

We held off on holding him yesterday as moving him a bunch seems to piss him off right now. We'll wait for him to get bigger, have bigger lungs, etc.

day 18: holding is poison?

Morning

Weight slightly up. Growing ok, but not as much as folks would like (100g over last week). So they'll be increasing the caloric density of his food - up from 23 cal/oz to 25 cal/oz. So basically we go from a 2:1 ratio of breast milk:formula to 1:1.



Oxygen requirement still hovering around 30%.

Evening

The evening was a little bit more exciting. We arrived around 8pm and I asked to hold him. They pulled Julian out and put him on my chest. He started de-saturating and went down to near 50%. Typically they'll expect some amount of movement to cause him to get a little funky. After about 3-4 minutes we decided to put him back in the isolet. 

His stats still didn't come back. They punched up the oxygen to 50, then 60 then 70 then 80%. Still no response. Eventually he settled down. They called over the doctor and respiratory therapist. They decided to get an x-ray, blood gas and check his hematocrit level. And the respiratory therapist dude fiddled with the oxygen supply. After he left and Julian was settled, I noticed the oxygen tube wasn't plugged into the source after all the fiddling. Oy! The x-ray showed nothing. Which by the way, runs Windows XP. Blood gas was normal (not acidotic, normal CO2). Hematocrit eventually came back as 26, down from 27. They decided to put him back on high-flow nasal plugs. 

Well that was a fun 2 1/2 hours.

day 17

Julian had a mixed day. He gained some weight, but is struggling a bit with low hematocrit levels. This is not uncommon for these little kids. They are born with a relatively low ability to produce red blood cells (oxygen carrying) and don't have a lot of them. In the womb they don't need them; Mom oxygenates their blood. But for premature babies they start growing quickly and need more red blood cells faster than they can make it. Julian's oxygen requirements are up to 27-30% right now. They'd prefer for them to learn to make their own instead of giving them a transfusion. So, we wait the 1 or 2 weeks for the Iron + EPO to work that they gave him this morning.



When we visited him today Joy held him. It was nice, but his blood didn't stay saturated (with oxygen) very well and when he went back into the isolet he struggled a bit to stabilize. Nothing any parent wants to watch. It was something like: look at Jules work hard to breath, look at the saturation number of the screen above, repeat for 5 minutes.

We did learn that we'll be able to bathe him in the next week or so.

Day 16

Overnight they checked his blood and learned that his hematocrit levels are low. Also he's up on his oxygen to 25% (from room air which is 21% oxygen). So they want to give him EPO (like certain disgraced athletes) and Iron. That happens on "Mondays, Wendesdays and Fridays", so they'll start that tomorrow. If he starts "presenting clinically" (aka something bad happens that they can observe) with further stress there's a slight possibility of giving him a blood transfusion.

Some setbacks?

Looks like Day 15 could be our first setback day in a while. He may have some kind of infection. They're monitoring him very closely.

Jules seemed to be struggling breathing today and had some "desaturations", seemingly he forgot to breathe which isn't uncommon. The are so-called ABCs (apnea of radycardia) that occurred in a cluster around 2pm and then a few small ones throughout the night. He's back on nasal plugs with some oxygen. That could be the infection.

The food side is looking positive, he's up to 5.2 ml/h which is full feeds for his weight which is up to 845g.

Also, I couldn't visit him yesterday or today because I'm not feeling well. Can't risk the infection. However, my sister is here. She and Joy visited Jules today and noticed that he seemed a little worse for wear today.

Finally, the routine cranial ultrasound was negative; no brain bleeds in either one. That's good news. The ekg they sent off to Seattle Childrens yesterday came back as PACs to keep an eye on, but nothing to worry about.

Gigi's getting ready for Halloween. Joy's Mom and Gigi had mock Halloween a few days ago and Gigi and her friend went to the pumpkin patch.

2 weeks old!

Shabbat Shalom.

Size - 817g, +3g. You can see the chart at the top.

Food - Julian is up to 4 ml/h on feeds. They want to go to 4.5 ml/hr at about 9pm tonight. When they get to that, then they will discontinue the TPN (Yellow Liquid Nutrition) because continuing it would give him too many fluids. So then they get to pull the IV after a few days. He'll eventually get up to 4.9 ml/h for his current weight - aka full feeds, that's based on a certain number of calories/kg.

Breathing - He keeps trying to eat his nasal cannula, so they're reading that as ready to remove the tubes. Good news.

Other - Routine cranial ultrasound today. No news on the "early heart beats" from the cardiologist yet. Joy and I might be getting sick, which means no NICU visits. Let's hope not.

Next few days - He'll just be biggering and biggering. There will probably be some pull-back on the feeds, based on how much he digests. Basically they draw out of his tummy every few hours and see if there's less than 2 hours "worth" of food in him. For him, today, that's 4 ml * 2 = 8 ml.

Just a tube up my nose

Today's first picture is actually a video that let us get a good look at him with fewer tubes.

Jules just has a tube up his nose now that is blowing "room" air at a low rate. This is good news as it means he has very minimal respiratory assistance. 

He's up over 800 grams. So I think I see a trend up now over the last week or so.

He has developed some PVCs or PACs - aka early heartbeats. They did a "12 lead" ekg (more detailed measurements) and sent this to a Seattle Children's cardiologist. It's apparently relatively common and goes away. He's not showing any signs of heart issues. Supposedly it was hard to find space for all 12 leads.

Over the next few days we'll try to get him to "full feeds" for him that's 4.9ml/h. At full feeds he would hopefully grow 10-15g/day for a few weeks and then 20g/day on average until he weighs 2200g-2500g. Also, they'll soon take him off "TPN" (bag of yellow stuff) that they drip into a vein. Once he's off TPN no more lines in. Just the tube into his tummy for feeding and some monitoring wires. That should make holding easier.

We've had lots of people lend a hand over the previous weeks both family and friends. Thank you!

Bye bye CPAP

Jules is no longer on CPAP. In fact, he had no "assistance" from about 7:30am til about 12pm today. Just breathing like we all do. However, in rounds today they decided the next conservative step is "high flow nasal cannula" also known as "tubes is his nose with wet fast air." The theory is that his lungs are still immature and could collapse, it's best to keep some pressure going.

They bumped up his feeds to 3.0ml/h. On our way to full feeds in 4 days. Still 2:1 ratio of breast milk to 30 calorie similac.

Blood Pressure (BP) is steadily going down - mean arterial pressure now in the high 50s.

Weight seems to be unchanged, head and length have grown. The doctors think weight is up. I can't see the trend. Basically he has varied between 700g and 770g for the last 12 days.


Can you spot the trend?

Apparently his length has grown by 10% since yesterday. At that rate he doubles every 7 days (remember your logarithms?). He'll be larger than the whole NICU in 10 weeks. So I'm guessing that's measurement error or he's a superhero. And don't get me started about measuring the head. I mean, seriously, a single measurement for an ellipsoid or whatever you call a 3-d ellipse. We want to keep a watch on growth, anyhow.

Oh, and they'll remove his "UVC"(Umbilical Venous Catheter) today. It's 12 days old. I guess it can mess with BP (cause clots and such) and has infection risk. Unfortunately, it got replaced with a PIV (peripheral intravenus [line]) in his head. Gigi had one of those, yuck. Looks gross, but nice big fat veins in there and it's harder for him to pull them out.

Day 12

Stable.

Respiration: Room air

Food: Up to 2.5ml/h (up from 2ml/h). Now 23 calories/fluid oz. They do this by having 2/3 breast milk and 1/3 "30 calorie similac". Breast milk is apparently 20 cal/fluid oz. Ok you got me - 23.3 cal/fluid oz.

Other: Went to parents in the NICU group meeting today. Lots of people in the same boat. Some have it worse; like one twin who survived and one who didn't. I got to hold him, change his diaper and wipe his tuchas. NB: "Got to" is not something that most parents say.

Mood: He seemed cranky today.

Day 10

Things are pretty stable. Here are today's pictures.

Respiratory

He's breathing fine on CPAP on room air. They're also trying just plain nose tubes with high flow (no pressure) and that seems to work too for short periods of time. He may graduate from CPAP in the next couple of days.

Food

"Eating" well. He's up to 2ml/hour, which is double yesterday's rate. No issues to speak of

Blood Pressure

He seems to have high blood pressure. They did an ultrasound to check out his kidneys and to check out the places where the central lines are/were. That came back negative.  We talked to a "senior resident" to ask what they look for next. She said they'd do an echocardiogram, but she didn't know we had already done one. So she said they wouldn't do that again. She then said there are hormonal things they can look at, but that they wouldn't look for those for a few days.

Here's a little tour of his digs (NICU cribz) or click the image below.

From Julian Day 11

Day 9: CPAP and Held By Dad

Another good day

- Switched to CPAP - pressurized mask on his nose, no more tube. We got some great no tubes, no mask pictures during the transition thanks to the NICU staff. If you've ever wondered what the genetic value of my large nose is, wonder no more. The fact that Jules appears to have inherited my massive schnoz seems to have given him a large physical air way into which the CPAP can flow air.

- I got to hold him. See the pictures.

Day 8: Holding Him and Eating

Another good day so far

• we got to hold him. Check out the pictures and videos.
  
• they took out his arterial line so we could hold him
  
• he's now on continuous feeding and they doubled the amount he eats to the equivalent of 1cc 1/hr.
  
• Gigi met him for real and sang him twinkle twinkle little star.
  

day 7: "eating"

Jules had a good day today. Some recent pictures of Jules and Gigi.

His PDA is closed. That's good news since it means that concerns around respiration (or sufficient oxygen/co2) are addressed and it also means that blood that might have been flooding the lungs went to profuse his gut.

He started "eating." The blood profusing his gut meant that he could try eating today. So they started giving 1 cc of "EBM" (expressed breast milk) every 2 hours. That's 0.034 fluid ounces. The way they feed him is by sticking a tube down his throat to his stomach and squiriting in the EBM. Then they wait a little bit and then use a syringe to suck out what's in his stomach. If they see less than what the put in they call it success. And in his case he digested all but a tiny little bit.

His aterial line is coming out. In other posts I mentioned that Jules has an umbilicalarterial line called his UAC. UACs are great for taking continuous blood presures and measuring blood gases. However if you pulled it out he would bleed out or exsanguinate for those doctor types. So that's one reason they don't like folks to hold kids with UACs. His UAC his coming out tomorrow morning. Following that, we're hoping to hold him for the first time.

CPAP coming in a few days. He's basically been breathing room air (no additional oxygen) and they've lowered the PEEP (pressure at the end of the tube located just above where his wind pipe splits to go down to each lung) and they've lowered the tidal volume (the volume of air they push in on each breath) and they've lowered the machine respirations (because he's "breathing over" the machine -- aka he's breathing more frequently than the machine). For all these reasons they think he might be able to graduate to the less invasive CPAP. Think pressurized nose-mask.

Also, Uncle Kirk (Joy's Brother) and Grampop Silver (My Dad) visited. Nana (Joy's Mom) is coming tomorrow.

Joy is healing well. Unfortunately they forgot a staple on the incision, which we had removed this morning. She's feeling a lot better.

Shabbat Shalom.

day 6

This was an uneventful day for Jules.

- PDA seems to have responded to indicine. But echocardiogram results not back yet.
- Respiration seems to be going well, room air via ventilator.

Hopefully tomorrow we'll learn that the PDA is closed and that we can think about graduation to CPAP and or starting to give him breast milk/formula.

He opened his eyes today and seemed pretty peaceful.

day 5: welcome julian "jules" drake silver

Jules had a good day.

- He got a name.

- Almost totally stable on all the interesting numbers. Breathing "room air", aka no added oxygen.

- PDA: Indicine seems to be working and the side effects are muted. They measured little change in urine output (good!) and an increase in blood pressure (could be good if duct closing). The will verify by echocardiogram tomorrow. 

- Cranial Ultrasound: No bleeds. Slight ventricular assymetry which is apparently ok. 

day 4 (long version)

- What's up with the PDA?

PDA detected via echocardiogram, moderate size. PDA is mostly expected in preemies. Standard treatment for UW Medical center is indecine. However other approaches include liquid restriction and ibuprofen. The indicine is up to 2 rounds of 3 courses of indecine. If the PDA doesn't resolve then surgery. While giving indicine they particular look for kidney issues - basically does he pee enough. If urine output is diminshed the treatment is discontinued.

- He had ultrasound to look for bleeds, mostly for baselining

No data here yet, didn't hear back on this yet.

- Can I hold him?

Not yet. lots of debate here. It's really hard to get a straight story as there's a lot of conflict among the medical professionals. There are basically two arguments:

1. baby is not stable, agitatated, etc. This could be visually or some system unhappy.
2. baby has an arterial line through his umbilical cord, if this comes out he could bleed out quickly.

The frustration here is that nurses, nurse practitioners and doctors all do not agree on the obviously qualitative interpretation of (1) nor on the real risk of (2). I've done my normal, presumably irritating, relentless asking of the same question to anyone who will listen.
The arterial line should go away generally between 7 & 15 days. So that will knock out (2) soon.
However, we learned yesterday that we can take his temperature and change his (insanely small) diaper. So this will go part way for this physical need to connect.

- Feeding

They really don't like to feed, near as I can tell with PDA. As far as I understand it, one impact of PDA is to flood the lungs with blood and therefore deny the gut of blood. So the baby probably wound't be good at digesting stuff.
Also the indicine treatment for PDA slows the kidneys. Also something not good to do when trying to feed the kid.

the last 24 hours

Short summary

- Joy is home and moving around well. Sushi need quenched.

- Baby has been stable and a particular, expected defect has been diagnosed as is being treated.

- Many good conversations with health professionals - Joy and I are getting to know the folks treating us.

- No name

a framework for the next few days

this is mostly a thought exercise to see if i can synthesize what the doctors said.

goal is less respiratory assistance and eating food both orthogonal (disconnected) from each other. The goal is to get on CPAP and start "eating" intravenously, hopefully breast milk and formula.

In the way of CPAP are the lungs maturing (should be good to go with second dose of synthetic surfactant), PDA (see bleow) and just baby tolerating it. So slowly they'll pull back on the pressure (PEEP) to see if he can do with less and the volume of air going in and the mechanical respirations. And then if CO2 levels stay good and "other stuff" (that's a technical word). Then they'll extubate (take out the breathing tube) and then try CPAP again if they can resolve the PDA issue. Maybe a few days.

PDA

They may also have to solve the this PDA issue which could be part of the breathing puzzle and blocks eating. Usually PDA resolves normally in most term babies. However first we have to find out if we have this ... so we wait in line behind to use the echocardiogram to validate that this is going on. Then they give up to 2 courses of medicine, indomethacin, over 48 hours. Unfortunately this medicine messes with the kidneys and so they don't want to feed until they figure this out. If that doesn't resolve it then they do some kind of surgery. Let's avoid that please.

What about this waiting in line? Oh right -- there are something like 38+ babies in the NICU. They even turned the regular post-partum nursery into a NICU room. Supposedly they're diverting mothers who who birth pre-term babies. So sometimes we have to wait. Not to worry though, apparently they wouldn't do anything sooner anyhow.

Anyhow, I got to calm baby down today which was fun. And my favorite nurse so far is back on (Ogechi) and he answers questions and gives data. I'm still learning how to talk to medical professionals to give all the data and not just the diagnosis. Joy and I like to hear all the data so we can ask questions. You know..it gives us the fiction of control. :-). So Ogechi humors us.

Suntanning

Two steps forward, 1 step back. Joy seems on the mend. Baby tried to move to cpap. But that didn't happen this time. When he tried to breath on cpap he was working too hard. So they tried increasing the pressure and oxygen content. Subsequently, they took some blood gases that indicated baby wasn't doing as well. So we step back to intubation for now and try again later. We're pushing (gently) to see if he's calm enough for 'kangaroo care" (aka baby skin on mom/dad chest skin) for bonding stuff.

Below is a picture of baby boy suntanning for jaundice. He gets to wear those sweet sunglasses when he's under the light (that's the strange blue halo in the picture).

cpap removal

From Baby Silver Day 2 Part 2

Removal happened. Baby breathing via CPAP. And bonus full face pictures.

gigi's first sleepover

and what has gigi been up to? well, thanks for asking....sleepover with hannah. teacher ted's music class. and then maybe even the tiny tots symphony. thank heavens the Fall overprogramming is in full-swing... (and thank G-d for irene and tal!)

how big is baby boy silver?

His head is the size of my fist.

His hands are about the size of an old half-dollar.

His arms are about as thick as a chapstick.

He weighs about as much as 3/4 full 32 oz Big Gulp or tall bottle of water.

He's about as tall as one of my hands held the long way plus one of my hands held the short way.

rounds (round 1)

Every day the doctors get together for rounds to discuss each patient. I went and talked to them about baby boy.  I got a few questions in until I was kicked out nicely for asking too many questions. They offered an in-room follow-up as consolation -- better for Joy to be there anyhow.

They're looking to get him extubated (take tube out for breathing) and help him breath with CPAP (positive pressure to blow up the lungs). They're cautiously optimistic. 

Another good sign is that the baby may get food tonight. He'll eat TPN for a while and then formula or breast milk. 

He did gain some weight from ~700g to ~750g. That actually wasn't necessarily a good thing. In theory, different scales yield different measurements (scale in delivery room v scale in NICU), so they're not too worried. However they want to see some weight loss, as weight gain may indicate baby is retaining fluid - especially in the lungs making it harder to breath. 

Joy is slowly sleeping on and off to gain strength to wheel into the NICU to seem that unnamed baby.

Joy's Dad and my Mom are arriving in a few hours.

And Gigi had her first sleepover with Hannah, Irene and Tal's daughter who live down the street from us.

Thanks for all the well wishing, food, calls, comments, etc. And Shabbat Shalom.

Baby on his front. Not doing much of anything...

Little Guy in Box

Here's the little guy stretching his fingers out. You can see the ventilator tube in the foreground.
That's his tiny little blanket on top.

5am update

Joy is feeling better, finally sleeping after all that stuff to keep her up when she crashed very briefly (but very scary) 10 minutes after coming out of surgery. 

Baby Boy is in his isolate under the tiniest blanket. Here are some pictures and video of what it looks like.

Blood gases look good on ventilator and it's turned down a lot, so they're thinking the'll try CPAP at 9am-ish. Like those sleep apnia machines just a bit smaller.

We're moving downstairs to 5 at 6:30 or so.

Baby Silver Day 1

Some first pictures.

also see twitter

http://twitter.com/scottsilver (go to twitter)

Just click on the "twitter" link to see short updates that I can post from my cell phone by texting/SMS. And now, you can just look on the left hand side to see the twitter updates.

putting joy in anesthesia. waiting for to go back for c-section.

happening "now"

baby maybe coming today

Things do move quickly. Looks like we're moving towards c-section in 6 hours. Haven't heard from doctor yet, just from the nurses to stop eating.

baby probably coming on Monday

The "team" of doctors here have placed their bets on delivery by cesarean on Monday. The primary reason is decelerations on the NSTs. Basically, the baby's heart rate slows down too much and too frequently during the monitoring.

As it stands now we'll be lucky to make it through the weekend. That would make 29 weeks 6 days (29w6d). Much sooner than we'd like, but sounds like the baby might do better in the NICU than in-utero.

welcome to baby silver 2

Hi folks:

Happy New Year. As we all know this blog wasn't supposed to start until December. In any case here's the place to get relatively reliable updates.

Some data:

Baby is too small: measuring about 25 weeks and it's 29 weeks old now. Estimated weight is 1.5lbs. Probably 2nd percentile. That's officially IUGR. The baby has a pretty good chance of surviving and a reasonable chance, say 60-70% of being "normal" after a few years. Of course, all babies are different.
Joy has preeclampsia. Cure is delivery. It seems managed.