11th June: Wow! The difference 5 days makes.

It’s been a good week. In the spirit of a picture is worth a thousand words (of course, that doesn’t mean I’m not going to write a thousand words…): Girls and Lara 1

Natasha is on the left and Katarina is on the right with her hand raised. Both of them have been consistently putting on weight, about an ounce per day, and their breathing has been improving.

Natasha hit 1.64kg or 3lb 9-10oz yesterday, and was taken of the Vapotherm which means she only has a nasal cannula with no pressure, but the option to turn up oxygen if needed. So far she doesn’t need it. She definitely has my sleep gene in there – apparently last time Lara changed her she didn’t even wake up.

Katarina has also done really well this week. She is up to 1.12kg, or 2lb 7-8oz, is now off the NAVA, was put on the CPAP two days ago, taken off that today and put on the Vapotherm – which is an awesome improvement in a couple of days. She really likes being off the masks that are used for the NAVA/CPAP and has spent most of her time on the Vapotherm sleeping, as you can see above (and below and in every photo taken of her today). She appears much happier, still alert at times but not so, ummm, cranky? She still is definitely the smaller of the two but then, she has just passed her sister’s birth weight so that makes sense.

When I came in today I was surprised to find Lara doing kangaroo care with both
of them! Here is one of the 6,349 pictures I took – Natasha just hangin’ out while her sister is completely crashed

Natasha hangin' out. Katarina crashed out

And here is our first family self portrait – it’s in what I call a indie rock band style (although that is slightly spoiled by me and Lara looking at the camera and smiling – the girls already have it down better than us)

First family self portrait

And if you want video (and you know you do), here is a video of the girls: http://youtu.be/JxPa1Du9mWE and here is a video of Bruno being introduced to their smell: http://youtu.be/xCjyc7mugRQ

 

6th June: Natasha passed 3lbs and Katarina hits 1kg

The great thing about having two units of measurement is that it doubles the number of full integer milestones the bubs can reach!

Natasha has been growing steadily since the last update and is over 3 pounds now at ~1.4kg. She is definitely getting bigger in length and head size but is also filling out into her skin – when they both came out they were about 12-13 inches long but mostly bone and a lot of skin. It was like the first thing that grows is the outline and the rest is filled in later, which works great in two dimensions but looks a bit, well, saggy, in three. Katarina has had a stop-start growth pattern, depending on how much energy she is putting into breathing and fussing. But she is now 1034g and has put on weight for four of the last five days. She is still on the NAVA but the settings have been slowing trending down-up-down so that she is heading in the right direction. We suspect she will have some medium-term issues – we get different opinions from different staff – with her lungs because she is coming up on 4 weeks of requiring significant breathing assistance. But she is off the ventilator and putting on weight so we are pretty happy about that.

We are becoming veterans of the NICU (neonatal intensive care unit). We go in every afternoon and get to hold either one or both of them. Natasha is always able to be held but for Katarina it depends on how her “desats” have been – these are when her oxygen desaturates, i.e. her dissolved oxygen levels drop below 88%. Sorry for talking shop, but they use a pretty cool dissolved oxygen probe that is basically a (red) light wrapped around one of their feet that shines through and somehow measures their oxygen level. Haven’t got the full details. You can see it on Natasha’s right foot in the video. They also have them connected to a heart and respiratory rate monitor so they are getting real time data on all the key parameters. They also take blood samples daily for blood gas analysis so I know they have a BGA around somewhere but can’t see it anywhere. They also mentioned that if their hematocrit levels drop they might have to give them this drug called EPO. When they told me that I laughed, and said “I sorta make that”. The nurse misunderstood and started explaining what it was. So I told her I worked for Amgen and please let me know if they give to them and I’ll look up the lot number to make sure it’s a good batch. And then I remembered what Lara said about how some people don’t understand my sense of humor and hastily told her I was joking and they are all good batches.

We’ve got to know another mother in our room – there are six beds in our room, two taken up by our girls and another taken up by her girl: even more premature born at ~25 weeks and weighing only 1lb 1oz (~500g) at birth. Geez. The other beds are usually taken up with babies that come and go in a couple of days – usually they just need to be stabilized and monitored. These babies come in and we look at them and think they are absolute behemoths. Then we find out they are 5 pounds and realize we have a different set of criteria for size.

Couple of pictures below. First is a picture of the NICU – Katarina is on the right and Natasha is in the background.

NICU

Here is Katarina lying on Lara today. Lara is on the left.

Katarina and Lara

And Natasha sleeping after a hard days…ummm….breathing?

Natasha

21 today, 21 today!

The girls are 21 today! Can’t believe it! Time to invite all their friends over, break out the yard glass and party!

Oh…hang on, Lara just reminded me it’s 21 days, not years…that makes sense, I mean a yard of beer would weigh more than them so it would be a little ambitious to have them drink it now.There would probably be a lot of spillage. But I digress.

Today’s update is all about breathing (and multitasking). There are a number of devices they use for breathing assistance. The device that gives the most assistance is the ventilator, essentially breathes for them if they don’t. The problem is that it can cause inflammation and also doesn’t allow the lungs to develop, precisely because it is doing the breathing for them. Stepping down from that is the NAVA, then the CPAP, then the Vapotherm, then they are taken off everything. The NAVA and CPAP have rugby-like helmets with tubes sticking out. Katarina went from the ventilator to CPAP, back to the ventilator, back to the CPAP and is now on the NAVA. Since each of these comes with a different hat I think she just wants to try them all out. Natasha started on CPAP, moved to the ventilator, back to the CPAP…might of gone back on ventilator at some point…can’t quite remember…but is currently on the Vapotherm and the thing we like about that is we can finally see her face!

Katarina put on a growth spurt over last weekend increasing from <700g to 900g, hitting the 2lb mark before dropping back. She did this while she was on the ventilator which, since it was providing all her breathing requirements, allowed her to direct her calorific intake to growth. She has been on the CPAP and NAVA all week and so has not been putting any weight on until today when she hit a new record of 930g (2lb, 1oz). Yay!. Her breathing is getting better slowly and so probably all the calorific intake is going into the effort of breathing. And waving her arms and legs around which she does whenever she can. She has been described as the “feisty” one. Words like “angry” and “full of piss and vinegar” have also been thrown around in descriptions of her. We’ve asked the nursing staff to make sure they get all that out of her before sending her home. They just laugh and tell me that’s not gonna happen.

Natasha is growing, up to ~1200g (2lb, 10oz) and is on the Vapotherm so is breathing well and definitely looking more filled out.  We get to hold her every day now and she likes it, falling asleep on whichever parent is handy. She will likely come home before Katarina at this rate, but that will still likely be around last week of July/first week of August as that is their full (40 week) term date.

They are both taking to their feeds. Natasha occasionally has rapid decreases in heart rate, normally it is ~170bpm but will drop less than 100 for a couple of seconds. This was obviously startling at first but then we noticed it was while she was doing something else, like taking a dump. Apparently at this point when they try to do too much at once (breathe, keep heart going, take a dump) they can “forget” to keep their heart pumping. It sounds strange but it’s sorta cute – while she is mid-dump her little face goes red, she has a look of extreme concentration and her heart rate drops. Then a couple of seconds later everything is back to normal. We hope she learns to multitask soon though.

Below is a photo of Natasha taken today with my hand for scale. We haven’t really got a good photo of Katarina yet – basically we want to wait until she is free of all medical-rugby helmets before posting a photo.

0601131404c

and if you want to see a video of Natasha I posted one on Youtube: http://youtu.be/EXFRZeuveh8 . It’s from yesterday. She hasn’t changed much. There is also a video of Bruno and his keen sense of danger on my channel if you want a laugh.

 

Twinmaggedon Day 12; 24th May, 2013

First up, a sincere thank you for all the emails and thoughts, we’ve read and cherish them all and apologize that we have not been able to answer them all individually. We were going to start a blog but that’s too hard so we are doing this old skool . And by that I mean a mass email (think first season of Portlandia, the 1990s are alive and well. Actually, come to think of it, a blog is probably 1990s as well.) edit: so we made it to the late 90s!!

The girls celebrated their 0.0329th birthday in fine style: lying on their parents chest for an hour. This is a big deal in the NICU. I got Natasha and Lara got Katarina because she hadn’t held Katarina before (I got to hold her Thursday). Natasha probably got a bit warm towards the end and started wriggling and gurgling, the former was worrisome and the latter was cute. Katarina just completely passed out and didn’t move an inch. Apparently mothers have an ability to regulate their own body temperature to keep the baby at the optimum. Dads just “cook” them.

They are both doing well – I would describe the mood as cautiously optimistic and “knocking on wood” every time we think that. The next paragraph has the medical details.

Natasha is now back to her birthweight 1060g, or 2lb 6oz, and Katarina has been piling on the grams over the last three days and is 825g, or 1lb 13oz, an increase of 120g since birth. Natasha is off the ventilator but still has a breathing aid (called a CPAP) that blows air into her lungs to help keep them inflated. Katarina is still on the ventilator as she has had some issues with her lungs – they have tested a number of things and ruled out some of the big bads (infection etc) so they think it is inflammation possibly caused by the ventilator, which sounds like a circular argument and it sorta is. They tell us this is not unusual for a bub of her size and have started her on a course of steroids to help. We suspect they are doing other tests and not telling us.  Natasha is now getting all her food through her stomach while Katarina still has the central line that supplements her feeds. They both got a brain ultrasound and the results showed that they both have brains and they both do not have hemorrhages in their brains. This is good.

So, they are making solid progress but we expect them to be in the NICU until they are close to full term which is 1-Aug.

oh, and for the record, their full names are Natasha Sophia Diener and Katarina Grace Diener,

Lara, Neil, Natasha and Katarina

12th May, 2013 (week 28, day 3): Mother’s Day Extravaganza

Hey everyone,

Lara and I are excited to report the birth of Natasha and Katarina at 10.15 this morning. Natasha (aka Twin A, the large one) came out first at 1070g (or 2lb,6oz) and immediately cried. Katarina (aka Twin B, the small one) came out at 705g (or 1lb,9oz) and also cried, but it was more of a confused gurgle. Both looked surprised and were immediately whisked away to the NICU.

They have stabilized in the NICU and are doing everything they are supposed to be doing, considering their tender age and weight. Natasha has a pretty strong grip and opened her eyes tonight to look in my general direction. Katarina just wriggled and gave me foot-fives. It is early days for both of them, and we expect it to be a two-steps-forward-one-step-back situation, but the care here has been impressive.

The C-section was a smooth, intimate affair. Just me, Lara and 16 medical professionals. She is recovering well and claims not to be tired. I make no such claims and so with that will sign off.

Neil, Lara, Natasha and Katarina