22nd August: The Kat comes home

After 103 days in the hospital, 117 days if you include the time spent inside Lara inside the hospital, Katarina came home today. She is right now sitting on the couch getting a feed from Lara after a big tandem cry session with her sister. And no, they were not cries of happiness at being reunited, they were cries of hunger and over tiredness. I’m not sure they really realize each other exist yet 🙂

She ended up coming home with a nasal-gastric (NG) tube as she couldn’t make the feed volumes required through the bottle. She needed about 70mL per feed (7-8 feeds per day) but usually only managed ~50mL so I inserted a NG tube yesterday to allow her to make up the difference. Yes, that’s correct, I did it. Of all the things I never thought I’d be doing to my children that is pretty high on the list. And if you had asked me before all this started whether I would be fine with that outcome then I would have had to think about the answer, but right now, of course, I am perfectly happy with it…because it means Katarina is now home.

We took a bunch of video. Here is Katarina being disconnected from the monitoring system (http://youtu.be/uIyngUSEqvE), breaking out of the ISCU (http://youtu.be/OJydsgqifh8) and coming home (http://youtu.be/XrKpJFsJcNE). Obviously more to follow, when we have time, maybe a couple of years from now 😉

Natasha, Katarina, Lara and I want to give a big shout out to their girlfriends still in the NICU:  Ellie (bug) and her mum Megan, and the twins Lola and Emilia and their proud parents, Kim and Albert. You are amazingly resilient, we are thinking of you all, and looking forward to the day that your girls break out and turn their faces away from the intense glow of the sun for the first time!

 

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18th August: Parent Room

Short update today and no pictures (still or moving) because they are all stored on the home computer and I am writing this from a parent room in Swedish Hospital. These are the rooms where parents room-in with their kids as a final step to bringing them home. Last night Lara stayed with Katarina, handling all her feeds etc, and tonight (drum roll) I am rooming-in with Katarina! And we are going to party so hard we might stay up until 2am! In fact, we might not sleep at all!

So yes, this means that Katarina is in the final stretch before coming home 🙂

Katarina is completely off oxygen and still gaining weight appropriately (today was at 7lb 11oz) but has been having trouble feeding. She has a lot of reflux and does not appear to have as much energy as she should. So most of her feed volume has been delivered through her nasal-gastric tube (NG tube). At this stage it is difficult to know how to resolve this as there is no simple “one size fits all” solution. But everyone agrees (nurses, doctors, Lara, me) that it would be much better to have her at home rather than here in the hospital. Even if we have to bring her home with an NG tube or…there has even been talk of a surgically implanted gastric tube (G tube). So this weekend we are trying a bit of a “hail mary” pass – we have taken out the NG tube and are spending three days with her, giving all her feeds by bottle – she has no other option to feed, so if she get hungry she’s gotta learn to eat. Removing the NG tube could also help because these can be irritating (to say the least). So far she has an acceptable average but a very wide standard deviation. What this means to normal people is that she is doing ok but being inconsistent, sometimes takes, an enormous, 70mL and sometimes 15mL. And no, there is no obvious reason for the difference.

In other news, Katarina is no longer blonde, or rather the sides of her head are still blonde but the top is black. That should be an interesting style if it continues. Their eye color is starting to resolve and they both currently have dark blue eyes. Natasha uses them to flicker her glance all around the room and only occasionally meeting your gaze. Katarina just stares at you. Like, right into your eyes. And holds your gaze for a disconcertingly long time. Then sloooooooowly blinks. I’m starting to get the theme song from “The Good, The Bad, and The Ugly” stuck in my head (She’s Blondie, The Good, in case you were confused…)

Natasha has been at home now for a couple of weeks and we are starting to get into a rhythm. Sometimes Natasha lends her voice to the rhythm and it is a mighty voice, although needs training. Usually there is a reason for it although she does appear to have a “witching hour” which is late evening or early morning depending on what time we are expecting it. Yes, it’s always the opposite to what we expect. No, I don’t know how she knows. I’m sure this rhythm will not last with two of them, or at least will be a more, ummm, complex melody. I’m not even sure how we are going to feed them both at the same time. Natasha has broken the 8lb mark which means I can now carry her around in a backpack. Bruno is just about getting used to having her around. Poor thing. Doesn’t know what’s about to hit him.

Before I sign off: big thank you to the Diener grandparents. They flew in this week to help and it has been great having the extra hands around, especially since either me or Lara are in the hospital. While I’m at it, kudos to Meredith for the insane vegetable garden she grew – we have eaten zucchini and corn (!!) from the garden this week. Corn growing in Seattle. It’s been  a fertile year 😉

3rd August: One at home, one in the hospital

I’d like to start today’s update with a huge thank you to everyone for your support, gifts, food and advice. It’s commonly said that “it takes a village” and we feel lucky that we have such a fantastic support network. I’d also like to apologize for not emailing people back individually (it’s sorta a choice between doing these blog updates or emailing people 😉 but we do really appreciate hearing from you all!

The girls are now into their 40th week so we can stop referring to them using gestational age…and start using their adjusted age. Since they are preemies most of their developmental milestones are based on their 40 week due date, which was 1-Aug, so even though the girls were 11.5 weeks old by 1-Aug their developmental milestones start on that day. That is, they are not expected to be acting like a 3 month old until they are 6 months old. Clear? This apparently resolves itself around 2-3 years of age when they catch up to their full-term brethren. So by my calculation this makes them 0.29 weeks (0.067 months) old. And according to the books and app on my phone they should be…..crying when they are hungry, or annoyed, or bored, or have gas, or have reflux, or are colicky, or are too hot, or are too cold, or can’t get to sleep. All those bioreactor troubleshooting skills are coming to the fore (I mean, when you think about it, an infant is sort of a bioreactor…)

First up today, Katarina is still in the hospital, has made some progress but still has her feeding tube in and requiring some, but less, oxygen. She is still not tolerating her feeding and it is probably reflux, which will hopefully resolve itself…but is difficult to watch (discomfort while eating, seems to be in pain, vomiting etc). She is however, still putting on weight and is now 2.9kg (6 lb 6oz), so has been steadily increasing since last update. It seems like she can come home if she gets one of these issues resolved but not while she has both. So she might come home with a feeding or oxygen tube which seems a little strange but apparently once they get to full term the socialization aspect of their development becomes even more important and she just cannot get as much attention in the hospital as she would at home. I still don’t have a good video of her because I keep forgetting to take the camcorder into the hospital, but this is what she looks like now:

Katarina with hand 1 day after 40week

People say she looks like me but I don’t see it:

Kat and Neil selfie

Oh wait, here we go:

Kat and Neil no resemblance

Oh, and while I think of it we currently have 0.5 GB of pictures and 3.6 GB of video. But some of that is of Bruno, so y’know, not as bad as it sounds….? (does that make it better or worse?)

Natasha has been home for 5 days now and had her first visit to the pediatrician on Wednesday, where she weighed in at 3.25kg (7lb 3oz) and measured 50th percentile on everything but length (smaller). Her (obviously) cute idiosyncrasies have already appeared and we have had to start compensating for them. My favorite is when I have her up on my shoulder and she arches her back turns her head towards me, gives me a wide-eyed, slightly crazy smile and then throws herself violently forward, smashing her face straight into my shoulder. She then starts crying. I start laughing. Yes, I am a bad parent. I’m wise to this now and it hasn’t happened (that often) since I now see the warning signs (that particular crazy smile). On the bright side, this is probably a great way for her to learn about cause and effect, but apparently that comes later than 0.3 weeks adjusted age. Could be as late as 832 weeks adjusted age.

We have been getting a lot of questions about how we are coping, and we are doing ok. We’re splitting the days up so that I usually go to bed late (2-3am) and Lara gets up early (3-4am) and that seems to be working ok. The one that is having the hardest time adjusting is definitely poor, poor Bruno. He knows that he is not the only one in our lives now and so is torn between being dejected (walking around with a Danny-Glover-I’m-too-old-for-this-shit expression on his face: http://youtu.be/wrDoWK-HFnI), trying harder to be a good dog (following us around and trying to get into our laps whenever he can) and petulantly taking ownership of things that are not his (http://youtu.be/K830bHMABqA). He has also started photobombing:

Bruno photobombing
Caption: STOP TAKING PHOTOS of that small noisy thing.

We think he is going to have a complete meltdown when he realizes there are two of them. Now, it might take him a while to realize there are two separate entities (counting isn’t his forte), but it is going to be worth recording. Don’t worry, we’re sure his discomfort will only last until he realizes they are capable of feeding him and then they will be his best friends/partners in crime.

EDIT: I have no idea where the related articles below came from so click on them at your own risk.