11th November: No more tube.

Short update today to let you know that Katarina now looks like this:IMG_9502

That’s  right,no more tube. She took to bottle feeding like we had been starving her for months. Here is the updated graph, and you can see she is doing really well.20131111 Graph of Kat feedingv2

And the girls have been improving their, ummmm, communication skills,mostly by showing joy and happiness and while Katarina has been showing this in a fairly traditional manner (http://youtu.be/dhsq58Oi-ww) Natasha has,well,found other methods (http://youtu.be/KaDz4IrWLh8). But generally everyone is getting along OK,even Bruno (http://youtu.be/1fpxHzOUwp4).

Oh and Natasha now looks like this:           IMG_9549

and Bruno like this:                                                                      IMG_9516

 

 

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31st October: Happy Halloween!

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First off, a big thank you to Grandma and Grandpa Kitchen who have been visiting and providing extra help around the twinmaggedon household this month! Well timed visit as the girls were just ramping up their smiling and cooing frequencies, and fall color has been not too shabby.

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In other big news, we are so very pleased to report that Katarina began feeding from a bottle (versus the NG tube or binky trainer device) and at impressive volumes. The feeding specialist at Children’s Hospital felt that she was old enough to have a thickener added to her formula…this magically made a world of difference. There was much celebration when she downed her first full bottle. She seemed proud.

Kat first full bottleKatarina Graph 29-Oct

The graph says it all and actually doesn’t even reflect her all time record volume achieved today (>500 mL orally by bottle). It’s a huge step and means we can begin to contemplate life without the NG tube and without having had to go down the road of a surgical G tube. The girls are still on a staggered feeding schedule (7am, 8, 10, 12pm, 2, 4, and repeat) so we are constantly feeding someone here, but feeding Kat by bottle with her nestled on our laps has been a joy and a vast improvement time-wise.

A noteworthy “first” for the girls was Canadian Thanksgiving, with the US holiday to come as round two. The girls seemingly had an instant fascination with meat (thanks to Aunt Meredith for this up close and personal introduction to meat).

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Otherwise, the pediatrician has been happy with the girls’ development. They are very engaged in their surroundings, chit chat (especially Kat who seems to be the socialite already) at length, grab for toys, and can lift and hold their heads up. Even more fun is that they seem to have noticed each other. They lie on their mats and gaze at each other for short bursts, swatting their hands at each other and sometimes making contact and holding hands momentarily. It is very nice for us that despite all the flailing arms, Tash has not managed to pull out Kat’s tube a second time.

At this point, pics are far more entertaining than words so here are a few.

Smiling Natasha

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Laughing Katarina

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Lara and the girls

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The whole fam

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Close up of Bruno’s dapper haircut

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Video links for those who need more baby time to come soon.

Happy Halloween!

25th September: 8 Weeks or 4.5 Months Old!

To summarize: the babies are smiling, the babies are smiling!! This is definitely the focus of our photography now. It makes us even happier parents and you gotta love how babies have evolved to smile just when the cry-eat-sleep routine is getting a bit old. It’s especially gratifying that Kat, our previously reflux-ridden girl who struggled with every feed, was the first to beam at us at about 5 weeks (adjusted age of course). Thankfully a formula change has made a world of difference for Kat and throw-ups are now rare. We’re just working on increasing the volume of her feeds…which have greatly improved. Many graphs have been plotted by us. We love graphs. We will spare you the graphs. And statistics. 

Instead, smiling baby pics:

Kat smiling Sep.2013

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The other fun development has been letting the girls “play” together.

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They lie on the play mat together and flail about quite happily hitting each other’s faces periodically without crying. I also thought I heard them exchanging coos back and forth during this morning’s play session. But then Kat let out a big yelp and I realized her sister had managed to pull out the feeding tube. No permanent damage. This was a good excuse to take a bunch of pics of lovely Kat without her feeding tube “accessory”.

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Bruno has also adapted well. He now sleeps through nighttime feeds without lifting his head. He is still Eeyore-like but seems to be a tad more interested in the girls in a positive, they-could-be-part-of-my-pack kind of way. He is learning to share. We are very proud of him.

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We’ve even been able to successfully navigate some outings, including quick lunches at (off hour, empty) local pubs, walks along Fremont canal, and a seriously major expedition to Golden Gardens.

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Or we “relax” at home. Lucky for us Tasha is actually good at relaxing. Good thing as cooler, rainier fall weather has descended here in Seattle.

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5th September: 5 weeks or 3.75 months old

OK, so we need to start with a photo.IMG_8656

Yes, those are fairly standard expressions. No, they cannot scratch the top of their own heads. Mind you, they are not always like the above photo. Sometimes they are more like:IMG_8581

And sometimes, minutes later, they can be quite different (http://youtu.be/9wHI_7u58j8)

We’ve had them both at home now for 2 weeks and getting into a rhythm – this is definitely an at-least-two-person job. All the twins support groups/books say that it is critical to get them onto the same schedule so that you can feed them both at the same time. Unfortunately that is not possible as they are at completely different places in their feeding routine. Natasha is being fed by bottle and it is up to her how much she takes – usually around 60-70mLs which is appropriate for a three hour schedule.  Katarina however has been taken off the bottle as she appears to have developed a feeding aversion due to her reflux issues. This is a common complication with preemies, especially IUGR (intrauterine growth restriction) babies such as her. Basically, when she feeds she gets reflux which causes pain and so she is starting to associate the act of feeding with pain. So now she is on a special “binky trainer” and is fed through that until she shows any sign of discomfort (usually anywhere between 0-50mLs) and then gets the rest fed (total 80mLs) through her NG tube. Here is a photo of the set up. 

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Note: Bruno is an optional accessory.

What this means for us is that Natasha is on a 3hr schedule and Katarina is on a 4hr schedule, which makes feeding a full time job. In fact, calculating it out, it takes 17-18hrs per day to just feed them both ( I’m not even sure how we would feed both of them simultaneously). This has been OK so far, mainly because I am on leave (it would be insane to be working right now) and because of all the help we have been getting from people. Big thanksyous have to go out to everyone who has been preparing meals for us. This has been incredibly helpful (and delicious!). Also big, huge thank you to Linda and Steve (the Diener grandparents),

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who were with us for the last month – definitely a cause for celebration!

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It was great to have you here. With the extra pairs of hands we were able to get out more:

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Yes, the girls have already been to The Yard.

Bruno is adjusting. Sort of. Has his good days:

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and his more “sad-face-I’m-being-ignored” days

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and he is still getting very, very tired (http://youtu.be/Rl5i35FIWKs, http://youtu.be/EU3-52UkJtA).

The days have been spent feeding, holding (http://youtu.be/dSc2e_WYXEM), doing tummy time (http://youtu.be/c1ypDCCQ5kQ, http://youtu.be/2957v1cNPkc) and soothing the girls. We really enjoy holding them in devices like this:

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because http://youtu.be/j_9wxLBeQWg

Anyway, better leave it there…I’m on the late shift tonight and the girls need feeding 🙂

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!

 

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 😉