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.