It was my birthday yesterday: http://youtu.be/DArpF7mWcsw
It was my birthday yesterday: http://youtu.be/DArpF7mWcsw
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:
People say she looks like me but I don’t see it:
Oh wait, here we go:
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:
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.
Natasha is home! Bruno is confused. He didn’t realize there was a little human in the car seat for quite a while. Since he realized he has been curious and, well, a little withdrawn. Wait till Katarina comes home as well 🙂
We spent last night in the hospital in a “parent room” to give us some idea of what we are in for:http://youtu.be/h0bVhc0Gb7s. While we were there we got the lab results back for both girls and their hematocrits were much improved. This was the last major milestone for Natasha and she was given one last shot of EPO and discharged late this afternoon. The best moment came for me when they disconnected her from the monitors and we got to truly hold JUST our girl for the first time. She seemed so much lighter without the long cords connecting the monitor to the probes and the sense of freedom of movement – we could now go anywhere! – was a much bigger relief than I expected. So of course there was only one place we wanted to take her:http://youtu.be/8NZQRfOGH50….
You might notice the quality of the video has improved – thanks to Anton, Vinaya, Steve and Linda for the early birthday present of a camcorder!
So the girls are almost at week 39 which means, since they are twins, they would have actually been born by now. And Lara would have been HUGE. Still got over a week to full 40-week term though: 1-Aug
Big news for the day is that Natasha passed phase 2 of her feeding regime and so moves on to phase 3 – she will be fed on demand and must take 75% of her volume over 4 shifts (2 days). She apparently celebrated by pulling out her feeding tube, and probably flinging it into the air like one of those graduation hats. And so that’s out and (hopefully) done with. She is 3.15kg now which is 6lb, 15.3oz….or just under 7lbs. This is what she looks like:
Today’s bonus was that she also completed her first feeding shift – only just, but did it. I had to give the final feed and she needed 40mLs and she got 40mLs (we didn’t count the amount she drooled onto the wash cloth…). She sucked the first 25mLs down like a 21-year-old polishing off the bulb of a yard glass, then it fell apart and sleeping seemed like a more interesting prospect, but she rallied and sucked down just enough to pass. We’ll see if she can do it again on the night shift. I think the secret to getting her over the line was a great pep talk from me (http://youtu.be/-2gR5dyYTCU). Here she is afterward taking a well deserved rest, and looking completely stoned (hey, it’s OK, it’s legal here) http://youtu.be/zEKAxbzJqQs
Other news: Natasha has also tried to curry favor with dad by sending her hematocrit into the low 20s, thus necessitating a dose of EPO. I wish they would choose other ways of impressing me. Maybe they are planning for future Stuart-O’Grady-style-confessional-book-deals (“I took EPO in 2013 but it wasn’t my fault”). Katarina has been responding to EPO well, showing a healthy increase in amount of red blood cells – we are hoping this will translate into an increase in oxygen carrying capacity so that they can get rid of the cannula.
Apart from that Katarina has had an OK week, is now up to 2.58kg (5lb, 11oz) but not tolerating her feeds all that well. She is still being fed through the tube, which looks like this:
and the tube is full when they start. Starts showing signs of distress around the halfway mark and we haven’t quite figured out why yet – likely nothing serious but we don’t want her getting distressed while eating, not the association we’re going for. After feeding she usually calms down and likes to look around – has a more penetrating/scheming look to her than her sister (http://youtu.be/wS9PMMbUx0Q). Mind you they do have similar poses, but even then Katarina (on the left) seems to be trying to read someone’s mind
The biggest obstacle to the girls coming home is that they need to learn to feed so that they can have their feeding tubes removed. They still haven’t made a lot of progress on this front since last update, but that is not a huge surprise; takes a while to build endurance. There are two methods the hospital uses (Lara has one more method, ummm, up her sleeve?), Katarina feeding through a tube:
Natasha feeding through a bottle:
Generally Katarina is trying harder but still hampered by her lungs – gets tired easily. Natasha has been, well, lazy – big enough, but gets halfway through, falls asleep and is happy to get fed through the tube. Today though, she took 2 feeds in record time so she might be getting better at it!
So current score….I mean, weight: Katarina has increased to 2.38 kg (5lb 4oz) which means she has put on a ½ pound in 4 days, probably needs a laxative, and also now needs “newborn” diapers/nappies. So she is really starting to fill out – she started off as a sort of flesh colored version of Megamind (without the goatee), then morphed into Homer Simpson with the occasional dash of Stewie Griffin but now is starting to look like a proper young lady. A lady that is obviously in desperate need of female cartoon character role models…here are some photos. If you flick your eyes between the two quickly it looks like she is dancing.
Natasha is up to 2.85 kg (6lb 4oz) and I think it is all going into her head, because that just keeps getting bigger and bigger. Here is a photo, burrito mode on the left.
and video (http://youtu.be/DthmnzaMTz8).We don’t have many videos of Katarina but that is mostly because we are taking them on our phone and Katarina is in the dark part of the room so you can’t see anything (damn phone! Why can’t it take better video!!! wait, what!? Why is my phone taking video?). But, I just got a early birthday present of a handycam so hopefully we will be able to get better moving pictures of Katarina.
Oh, and want a new definition of bittersweet? Katarina got her first Amgen drug today: EPO (erythropoietin). Her hematocrit levels have been a little low so the nurse practitioner came by and said that they could give her a blood transfusion or there was another option. She was surprised when I said “you want to give her EPO, yeah?”. For those people who don’t spend their working days growing vats of hamster cells: EPO is the hormone that stimulates red blood cell production and so should improve her hematocrit levels by helping to promote red blood cell production from the bone marrow (whereas transfusions tend to provide the red blood cells but suppress the bone marrow production). The main side effect is that it puts her out of contention for this year’s Tour de France (but only if she is caught using it!)
Only three more weeks and they should have been born!
Girls turned two months old yesterday. We celebrated by giving Natasha the second bath of her life. We hope the frequency of these to increase. She seems to really like them, no crying, just wide eyed curiosity. Remember, Katarina was not quite so quiet during her first bath and we will collect a second data point on that experiment tomorrow. Here is what they currently look like, Katarina on the left:
and here the “paparazzi style” shots
They have been steadily putting on weight; Natasha is now 2.71 kg (less than ½ oz from 6 lbs) and has outgrown the “preemie” size nappies/diapers and is on “newborn”. She is also fitting into 0-3 month size clothing! Katarina is 2.17 kg (4lb 12oz) so catching up to her sister, still requiring oxygen, but is doing better at feeding.
The next big achievement for the girls is to learn to feed from a bottle, so that their feeding tubes can come out. This takes more effort than you might think – we were told that they do not normally start developing the suckle response in utero until 36-37 weeks and they are 37.5 weeks gestational age. They do not have any problems latching, but just do not have the energy to keep going long enough. Their next achievement, on the long and elaborate flowchart, is to take 75% of their feed volume twice per shift for two shifts. If they do that they move to “all feeds on demand”. If not they start again. Katarina is doing better than Natasha and has done three in a row once, but for the fourth she started breathing more heavily and became visibly tired pretty quickly. Natasha, on the other hand, just gets bored and falls asleep halfway through the first or second attempt (It’s soooo much easier to just get fed through a tube). They will get there, but need to build up endurance (bright side is that this will prepare them for all the marathons they will be running later!). Right now, Katarina is probably a little too small and Natasha….too sleepy, except when something annoys her, then she does this: http://youtu.be/kQmUApwBIKU.
They’re out! Both of them!! They were moved down to the “intermediate care unit” or ISCU at 6.30 this evening.
We thought it would be a bit longer before they were ready and we never thought that Katarina would be moving down at the same time as Natasha but, well, they have “graduated”. Natasha is now 2.57 kg (5lb, 10oz) and Katarina is 1.94 kg (4lb, 4oz). They are both feeding from bottles, with Katarina rapidly catching up after Natasha’s little episode last week – which we have now decided was Natasha stalling for time because she didn’t want to leave her sister alone in the NICU. Katarina still needs a little more oxygen (~25%) but they are on their way to coming home. Couple of pictures. First Katarina in the foreground and Lara in the background saying goodbye to the NICU
Then the elvelator (lift) ride and the new ISCU set up (Katarina in the foreground, Natasha in the background):
Very short video of Katarina being moved here (http://youtu.be/wNnUCYpvVbg)
Guess we better get the cribs ready….
I apologize for the delay in updating. Essentially what happens is that we go to the hospital every day and we take photos and video (“video”….ok, that sounds quaint) and then we come home, and I get them downloaded onto the computer, and review them, and watch the “videos”, and watch them again, and then review the photos again…and again…and decide which ones we are going to upload, and then review them with Lara, and get her approval, and by then it is midnight and I’m too tired to write an update so we go to bed. Repeat the next day. We now have over 2 gigabytes of photos and “video” of the girls and they have just hit 7 ½ weeks old…..we’re gonna need a bigger cloud server at this rate.
But don’t worry the girls are doing fine, although Natasha decided to mess with us this week. She had some intestinal issues (believe me you don’t want the details) and so was taken off food and put back onto intravenous nutrition (the weirdly bright yellow green solution that calls out L-cysteine as a special ingredient (that’s for all the cell culture folks reading this…)). Of course they told us the worst case scenario, so we, of course, did the worst thing we could – googled it. Word of advice – don’t google medical preemie stuff. One of the biggest tell tale signs that she wasn’t suffering from what-they-said-she-might-be-suffering-from, was that throughout the whole thing her demeanor did not change: she is generally a happy, sleepy baby that, when something bad happens, loses her shit until you correct it, and then within about 5 milliseconds she is totally fine again. Since this attitude did not change we were not too concerned about her condition. Until we googled it. Remember. Don’t do that.
After Natasha, who now looks like this:
had her little intestinal hissy fit she was very hungry so they decided to skip some of the training regime that I outlined in the previous email and move straight to bottle. She took to it well. Here is a “hands free” example (not sure this is nurse sanctioned methodology but needed my other hand free to take the photo…hmmm…not sure that reads well):
Katarina, who now looks like this:
used this time to catch up with her sister in terms of breathing and feeding. She is now off the Vapotherm and on a boring, run-of-the-mill, old-person cannula that feeds her a little more oxygen than air . But she has caught up to her sister in terms of feeding and is ready for a bottle!! This is excellent news as the staff have said that the only reason Natasha is still in the NICU (up to her little “issue” this week) was because they wanted to keep her near her sister who was still needing breathing assistance – now it looks like they might both move down to the step-down unit at the same time.
They are starting to reveal more personality traits. So Natasha likes to purse her lips and her eyes are slowly revealing color (or colour). She has a very similar hairstyle to me, which is unfortunate, but hey, they say the newborn look like their father. Katarina is ridiculously blonde – and the hair starts from her eyebrows and is growing on her forehead right now, sorta blonde-werewolf-like. I hope she stays that way, but then, I am looking up “Darth Vader Onesies” to dress them in so…..let’s just say “others” think differently.
They have both had baths and we thought we would summarize the contrast in photos. First Natasha:
We’ll see who learns to swim first.
For those keeping score, the Sounders beat DC United 2 – 0, wait, I mean Natasha is 2.43 kg (or 5lb 5oz) and Katarina is 1.89 kg or 4lb, 2 oz. This is a really good improvement on last week and the staff said today that they might have to decrease Katarina’s feed because is gain weight too fast…nice problem to have!
And yes, of course we have a bunch of “videos”. There is finally a “video” of Katarina…where she gets stage fright: http://youtu.be/POIgkUAyWl0. And here is what Natasha thinks of her feeding tube being taken out: http://youtu.be/3ar7z-XE2mI. y’know, y’d think she’d be happy….
and finally a couple of photos with their totem marsupials:
Today is their 6 week birthday! That means they are 34 weeks old! Only six more weeks and they will be full term 🙂
Natasha hit 2.1 kg (4lb 9oz) and is looking like a cute little baby. Emphasis on little. No, wait! Emphasis on cute. She had her first bath this week and seemed generally curious as to what was going on. She has also progressed on her binky/dummy/pacifier training, passing her first milestone: the “sucking 5mLs down in less than 5 minutes” achievement. She now moves onto the advanced course called “sucking 10mLs down in less than 10 minutes”. Don’t ask me what comes after that because there is a very elaborate flow chart to this process. The nurse showed it to me. Amgen would be proud.
Natasha is generally a happy infant but when she isn’t, wow, yes, her lungs really work. She was lying on me a couple of days back and got too hot, so fussed for a couple of minutes and then started to absolutely wail. She would lift her head of my chest and just scream right into my ear. The nurse came over stood next to me and started asking questions and I had to tell her to speak up because I couldn’t hear anything over Natasha. It was so loud I started looking for a connection to a Chrysler V8 engine and I swear one of the older nurses threw herself under a desk and covered her head with her arms. The instant the nurse put her in the crib she stopped. And smiled and blinked. Happy again. We gave her a couple of minutes and put her back on my chest and she slept like nothing had happened. Weird kid. Here she is waking up (http://youtu.be/Ds3SlIWpnZw). It takes a while. Here she is preparing for her next binky/dummy/pacifier milestone (http://youtu.be/7V-oFlF6QCM)
Katarina has been mostly just hanging out. She is now at 1.51 kg (3lb 5oz), which is a good increase since last week but she took her sweet time about it. Her weight didn’t really change during the week but started going up on Friday. We want her to keep getting bigger because she is still on supplemental oxygen – her breathing hasn’t improved since last week – so the best thing would be for her to grow bigger lungs. I am looking forward to the day she can scream like Natasha. Let me clarify: I am looking forward to the first day that she can scream like Natasha. But she is filling out and starting to look like a chubby baby. Definitely very alert, when she wakes up she spends a lot of time looking around with her big dark eyes. We don’t have as many pics of Katarina mostly because she is in the darker area of the room and we don’t want to use flash, but here are two close ups we took Friday.
I got two cards this morning, one from the girls and one from Bruno. Apparently he is feeling like there is a little competition on the horizon so he is starting to send me cards. Don’t worry, we had a talk and I assured him that the girls would not be eating any of his lamb lung and so he was fine. He celebrated by going into what we call “full muppet mode” http://youtu.be/T6Goo7oJUc8). And I really hope the girls can keep that promise (note to self – put lamb lung treats on shelf…actually, put all dog stuff on shelf….actually, baby proof house…)
The girls are now 5 weeks old and have been making slow and steady progress over the last 5 days. Natasha is now 1.79 kg (3lb, 15oz) and when we went in today she had been removed from all breathing support and was in an open crib! This is huge, she is doing so well (http://youtu.be/kvRAC1Y-KAo). Her lungs and vocal chords have also been tested (http://youtu.be/HfOzOfMWLjY) as has the Natasha silencing system (http://youtu.be/CACZ_Ji_hYg). Katarina is also progressing, still on the Vapotherm but they are lowering the flowrate every couple of days. She is up to 1.36kg (3lb exactly), so pretty much keeping up with her sister in the weight gain department. Since she is now free of all helmets, and since it was fathers day we took a few photos. Like 400MBs worth. Some of them are below. First, Katarina using dad as a deck chair – check out the arms behind the head:
Close up for Katarina:
Natasha on mum:
Now that they are heading towards fully handling standard atmospheric temperature and pressure, the next thing is to get the garish orange tubes out of their noses. These are the feeding tubes and necessary because they do not have the skills or endurance to feed from the breast/bottle. Basically, gotta get breath/swallow/suck in the right order. Harder than it sounds. I still have problems. So Natasha has started rigorous training that we were going put into a Rocky-like training montage…but those are really hard to make and it would be made up of Natasha sucking on a finger, then sucking down 5mL of milk, then 10mL, etc..not as compelling as it sounds. Anyway, Natasha is up to the 5mL repeats (once/day) and I think just completed her first. Katarina still has to be weaned off the Vapotherm before she starts.