10
February
2010
This morning the person from the ‘feeding team’ came down to visit again finally. She hadn’t been since last May, when she unfortunately visited right in the middle of a period of intense retching, gagging and throwing up while Dorrie was recovering from a course of antibiotics.
Of course, this time Dorrie slept through her whole visit and we all just sat and talked. However, Miss D is in a better place in terms of eating and it’s probably time to get that ball rolling again however slowly.
As chronicled before, but perhaps not mentioned very lately, we started introducing real food into Dorrie’s tube feedings at the beginning of last July. We went very slowly introducing new foods, giving her about 3 weeks in between to let her body adjust to something other than formula for the first time in a long time. As we introduced new foods we continued to feed her the old ones, which meant that for quite a while she was getting the exact same real food every day — a big contributor to her orange tinged skin. But now, finally, we are getting to the point where she has enough foods that we can mix it up.
More importantly, she has started tolerating much larger volumes (8oz at once without throwing up!) and this means that the real food feeds (still using Neocate as a base) can be made to contain enough calories that we’ve been able to cut back on her overnight food. And finally, last week, we took the plunge. No more overnight feedings!!
We’re still working to introduce additional foods (we need some more fats in particular), but so far so good. This month has been pukier than December or January, but not alarmingly so — she seems to be tolerating the change pretty well. Whether or not we have the calorie mix right is another question, because we’ve had trouble getting accurate weights at home. She seems skinnier to me, but it also may be because she’s lengthening out.
Posted: little fat fairy, moving forward... or not, our little witch
17
January
2010
Last year for Christmas presents, I made a little book of 2008 with some text summarizing each month and lots of pictures. I made the same thing again this year, and now that nearly everyone has seen their copy (just one left to send out), I’m free to recycle the text in a lovely year in review post!
(For the interested, here’s a page that shows a preview of the books from 2008 and 2009. Ignore the bits about what to buy and just click on the ‘preview book’.).
January 2009
The year began with not a bang, but at least something nice: Dorrie had officially been home more days than in the hospital.
The rest of January was fairly quiet. Nursing coverage was stable and everyone remained well. Dorrie was teething quite a bit and her face was pretty chapped from all the drool that she kept getting all over her chin and cheeks.
She had started to show more interest in her toys, finally, at nearly 18 months actual. There was still not much effort to play with them beyond getting them to her mouth (and that was pretty hit or miss) but she knew they were there and that she wanted to eat them.
This month also saw Dorrie’s first real encounter with snow. I put some in a bowl and brought it inside to show her. She was highly suspicious at first, but curiousity got the better of her and her hand drifted toward it. Much to her dismay, it was extremely unpleasant to touch and worse, it stuck to her fingers making them cold!
February 2009
Dorrie’s interest in her toys continued to develop this month, as she suddenly discovered the joys of mobility. Still unable to sit or stand or crawl, she found it was possible to push herself around on her back. It was slow going, but it allowed her to see her small world from a new perspective and chase down toys which had gone out of reach.
We found this out one day before her bath, when we gave her a Christmas toy we’d held back — a Fisher-Price Little People airplane. Given her fear of large toys in the past, we were worried that she would not enjoy having this one. But I also thought she might like to bite the people, so we brought it out and stood the people nearby. The plane we put a safe couple of feet away. But she spotted that plane and lunged for it, taking us all by surprise.
She also started to show some interest in books, as we began to read more of them to her. It still wasn’t clear just how much she was understanding, but she definitely enjoyed the experience of listening, looking at the pictures, and being given attention by whoever was reading. She also enjoyed ‘reading’ on her own.
And, most exciting of all, she suddenly learned how to hug.
March 2009
March blew in with woes amongst Dorrie’s staff. Her overnight and sometimes day nurse had a family emergency and had to stop working most abruptly. It took us nearly a whole month before the agency was able to dig us up a new night nurse.
Otherwise, the month itself was was pretty average. Dorrie had her sleeping issues, which were compounded for us by the lack of night nursing. Toward the end of the month, she finally started to wean the PEEP on her CPAP — one tiny step closer to getting off the vent.
April 2009
April was another healthy month. Easter was uneventful, and Dorrie was in a mood to perform, so spent the day lifting her head up and scooting around on her back. She was also introduced to a new friend: Ducken.
While we all soon got tired of hearing him sing his chicken dance song, she found him endlessly entertaining. The only problem was that his activation button was too difficult for her to press on her own, so we had to keep pressing it to make him go.
Toward the end of the month, Grammy finally got one of her fondest wishes and was able, with daddy’s assistance, to take Dorrie for a walk in her stroller. The two of them packed everything up and rolled out, making their way down to the mailboxes and back. A few days later, we also dragged Dorrie and all her stuff closer to the sliding glass doors so she could see outside. Neither time was she especially enamored of the sun, though she did not find it as fearsome a foe as the dreaded SNOW.
At the end of the month, Dorrie celebrated an entire year home from the hospital.
May 2009
The month of May was a sickly one around here. Dorrie got an ear infection at the beginning of the month, and then mom got sick in the latter half of the month, followed by dad. Dorrie didn’t entirely escape either, and was placed on antibiotics.
Because of all the illness, there wasn’t too much else going on. Dorrie held steady and got through her infections with no major setbacks, and that was all we could hope for.
We were able to place some orders for new equipment for Dorrie this month, to give her more options for sitting and being supported in new positions. She also continued to show an interest in watching mom and dad eat and drink, especially in our cups. But this didn’t translate to wanting actual food or liquid for herself.
June 2009
The first bit of new equipment arrived in June: the stander. This is just what it sounds like, a contraption that allows Dorrie to stand up straight. She’s held in with straps and padding and has a tray upon which she can have toys while she’s busy standing up.
She also continued to outgrow her orange Tumbleforms chair which we had borrowed from the OT. But the new seat we had ordered did not arrive this month, and so we had to keep squashing her into the small one.
Due to the antibiotics in May, June was a retchy, pukey month compared to others. We made little progress on the nutrition front at all. A couple of small steps were made on the respiratory front, however, and by the end of the month, Dorrie was on a PEEP of 5, which is about as low as the vent can handle.
July 2009
Dorrie did a lot of standing in July, working on keeping her head up and getting used to the sensation of having a bit of weight on her legs. It soon became clear that with the assistance of her arms, she was actually quite good at keeping her head from flopping forward. Her endurance improved rapidly and soon she could spend an hour or so in the stander.
Her digestion also returned to normal, and so at the beginning of July she began to get some pureed food through her tube instead of formula. She started with prunes, and when those were a success, we added carrots and pears. She also started using her mesh feeder a little more frequently, after she figured out how to start scraping bits of carrot off of a larger chunk. The feeder kept the scraped bits from making her gag. She was also more agreeable to tasting other foods, as long as she didn’t have much to swallow.
She proved she had made some additional progress when, as the weather got hotter, she was able to endure her clothing. The cold mats and ice packs remained retired and naked baby did not return.
Dorrie spent her second birthday with daddy and grammy, because mom had to be out of town. She was forced to endure many forms of torture, including ink on her hands and ice cream on a spoon. Going down a slide also proved to be traumatic.
The next week, Dorrie received some sparkly purple hearing aids. When they’re first turned on, they play a little tune, and she found the sound of it hilarious.
August 2009
In spite of our intentions, Dorrie, since she lives right in front of the tv, sees a lot more of it than we would like. She began to get into Sesame Street over the summer, though it had always bored her before. She’s also a fan of anime, particularly “Tennis no Oujisama” (The Prince of Tennis).
We were able to add additional foods to Dorrie’s schedule during the month of August, as green beans, pears and turkey were proved tolerable. The introduction was going slower than we had hoped, but she was tolerating the real foods wonderfully.
Dorrie’s chair finally got to the equipment company at the end of July, but we weren’t able to get it adjusted and here until the second half of August. But what made this arrival even more exciting was the fact that we were finally able to get Dorrie off the vent for small periods of time each day. She was still attached to oxygen (along with her sat monitor and suction), but no more vent! We began with 30 minutes, then quickly went up to an hour. Things were astoundingly quiet in the house with the vent turned off.
September 2009
Now that Dorrie was finally spending some time off the vent and the weather was still good, it was time for a road trip. My grandmother, Dorrie’s only still living great-grandparent, had never yet been able to see her. So when mom’s work plans fell through on Friday when dad had already taken the day off, we decided it was time to go visit.
Grammy came with us, as an extra driver, Dorrie wrangler, and because her car was larger and more comfortable. We set out around 10am and drove to Clifton Park through several surprisingly violent rain showers. Dorrie was an extremely well-behaved little girl. We brought her new chair with us (great-grammy’s house has a wheelchair ramp) and were able to leave the vent in the car while we went inside. The cats were out of the way and we all gathered in the bright front room of the house.
Dorrie wasn’t entirely sure what to make of her great-grammy, but she seemed more curious than scared or upset. She got held, she played on the floor a bit, and then it was time for us to go again. We piled everyone and everything back in the car and then drove back to NH. It was a really long day, but it went as well as possible.
October 2009
The swine flu was in full swing by October, and vaccine was still nowhere to be found. We were on high alert for illnesses all month long, but fortunately they were avoided by us — the nurses weren’t so lucky and both were down for the count.
Dorrie finally tried out the swing, companion to the evil slide. The swing was less traumatizing, and she tolerated it for some time before she was taken out.
She also got another new chair, a bumbo-esque chair meant for older children. It has a high back and arms, which gives her a bit of support and helps her to sit in it with minimal assistance. It’s much easier to get her in and out of than the full blown rolling chair, though it’s probably not nearly as comfortable.
Dorrie began to get more and more opinionated over the fall, preferring certain books over others, certain tv shows over others, and wanting everything just right. One of the things she decided was just right was dad singing her to sleep. Mom, not so much, though she did find it amusing to listen to the alphabet song.
November 2009
In November, Dorrie’s sleeping schedule deteriorated to new levels of inconvenience. After growing more and more difficult to coax to sleep every night, both she and mom decided independently that they weren’t going to deal with that together any longer. Dorrie started staying up until it was daddy’s turn to get up, reinforcing his identity as Sleepy Guy.
But a girl who stays up until 2am can hardly be expected to wake with the dawn, and so Dorrie began to learn the joys of sleeping until noon. Since the morning was previously her time of greatest activity (due to it also being her time of empty stomach), this started to cause problems. Her use of her stander and her chair plummeted during this month, as she would wake up just in time to eat her lunch. Several times she had to be woken up to participate in PT or OT.
The introduction of real food continued, and in November Dorrie added sweet potatoes, apples and corn to her diet. The RD finally arranged a visit, and we started to come up with a plan to eliminate the nighttime feedings.
Dorrie was increased to 6 hours a day of time off the vent, which she took in stride. She also finally received her first cuffless trach, and so every other week was suddenly much more able to find her voice.
After some more ridiculous vaccine drama, the month ended with Thanksgiving and the return of the Christmas tree to Dorrie’s living room.
December 2009
December started off very well: Dorrie officially rolled over for the first time, from back to front. She had managed to flip herself quite a few times, but this time was different because it was very clear that it was deliberate. She pushed herself up onto her side, and investigation revealed that she was looking quite pleased with herself. So after making sure none of her tubes were going to get pulled, she was let to do what she wanted. Slowly, she eased over the rest of the way to her stomach. And then, the clincher, she struggled until she pulled her trapped arm free so she was fully flat.
It also seemed to us that she was beginning to understand some of the signs we’d been working on with her. After many months, she seemingly understood the sign for ‘book’ and for ‘all done’.
The rest of the month was quiet. Quieter than we’d hoped, actually, as we’d been anticipating a visit from Grandpa and Uncle Steve that had to be postponed due to illness in WI.
Dorrie was increased to a total of 8 hours off the vent each day.
As can be seen in the pictures from this month, Dorrie’s diet, heavy on orange veg, started to lend a distinct hue to her skin which became very visible around Thanksgiving and after.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
6
October
2009
MICE (developmental services for visually and/or hearing impaired children) came for their monthly visit on Friday. OT and PT managed to come then too and we discussed how difficult it is to sign to Dorrie while we’re using our hands for other things (supporting her arms, holding her up, etc.) While everyone agreed on the necessity of being consistent in presenting visual language to her, I don’t think any real ideas were proposed to make it easier to do.
She continues to make small improvements in her hand control, her ability to scoot around on her back, and the effort she expends to hold her head up with proper support elsewhere. But she’s still not anywhere near being able to provide the head control she needs to even safely prop sit or be carried with one arm. It’s very discouraging. It’s easy to see how much easier life would be if she could just capture this one skill. I’m left wondering where we would be if we hadn’t had the major crisis that we did back in Feb-April 08. Was she really making progress on head control before that? She was still so young then, it hadn’t entered our heads to worry about it, and we had no reason to believe it would be a problem. Looking at pictures, she appears better off than she is now, but pictures lie so easily. I had her wrapped in a towel the other night and by arranging it just so I could hide all the tubes and wires. Caught at the right moment, the right angle, everything looks normal.
I like the way they’re both looking to the same side in this picture, and the fact that you can see Dorrie’s neck. It’s an illusion — she’s leaning back over daddy’s arm — but it’s what she probably would look like most of the time if things had worked out differently.
Here’s one of the out-takes from her visit with great-grandma. SMACK.
We got her the slide and swing for her birthday, and yet after her traumatic introduction to the slide, we hadn’t really used it at all. Trying the swing out went a little better. She fit well, but the pictures are a bit deceptive: we had to push it forward a smidge, giving it just enough tilt to have gravity assist her in keeping her head up.
What’s daddy doing back there?
Something is very wrong with you people.
Dorrie’s newest favorite hobby is to watch her sat monitor. She’s especially amused when it alarms or stops reading. I’m not entirely sure she’s connected the fact that this often happens when she bangs her foot on the floor, but she does it enough regardless.
She’s also interested in all the tubes and wires that constantly surround her. This day was unusual, because she didn’t get upset when she moved off of her mat and the carpet and onto the tiles. Most of the time she finds them too cold to stay on them for an extended period.
She’s been working on a new face.
Sadly, she’s pretty much outgrown her SnugRide 32, forcing us to move to the next level of car-seat and abandon the infant carriers we’ve been using for the past two years. Her new MyRide looks incredibly comfortable; everyone who’s seen it has wanted to sit in it. She approves.
Beautiful.
Posted: little fat fairy, moving forward... or not, our little witch
15
August
2009
Almost nothing at all happened the week before last. I’m not sure if I even got many new pictures to add. There was no word on the stroller, there was no advance on the trach collar, there wasn’t even any PT, since she was on vacation.
This week we finally got the ball rolling on several fronts.
Stroller
This has been an endless source of frustration for us. The stander was delivered to the equipment company in May and we got it in June. It’s now been 2 months since we got that. 2 months since we heard the stroller was approved. So this week we started harassing everyone: we called the equipment company, we called the PT, and finally we’re told it’ll be delivered on Monday. I’ll believe it when I see it, but at least we have a promise of action. I hope it’s as nice as I remember!
Trach Collar
After the fiasco a couple of weeks ago, the head RT came to our house and brought some additional materials and showed me how to set up the mask in a more reasonable fashion. Finally, last Wed, he and Dr. Optimist’s nurse came to the house and we were able to try it out. Dorrie was much calmer this time without the Moron Twins messing around with her ventilator and she handled it very well. She sat in my lap and kept an eye on the people in her living room while we had the mask on her. After we’d had that on for about 30 minutes, we switched her to a simple HME with oxygen attachment, and we were finally at the point where I wanted to be. Oh, it was lovely to have her attached to just a tank with a nice light tube.
We also got a chance to see how she would do just on room air — switching to the trach mask entails a near complete disassembly of the ventilator circuit, because we use the same humidifier. So we tried just pulling her off and letting her sit while the RT put it all together. She did great! I was nervous because the only other time she’s off oxygen during the week is for her trach change and she always drops like a stone. But apparently that has much more to do with the fact that she hates trach change and screams bloody murder when she realizes that’s what’s about to happen than it has to do with being disconnected from the oxygen source.
Our biggest problem with the collar (either way to do it) is suctioning. I don’t know what other babies are like, but when Dorrie is awake and active, she can need suctioning as often as every 5 minutes. This is generally fine because we have suction in line with our vent circuit — it’s never detached from her and remains as ‘clean’ as the rest of the circuit’s interior. The trach mask just has a hole where you can thread a catheter in and suction directly. The HME has a little flippy door where you can do the same. The question is what to do with that catheter when you’re not using it. If she only needed it every 30 minutes or so it’d be one thing, but it seemed like we were always pulling it out, and I get more and more tense because it just feels so dirty. Plus it is a huge pain in the butt!
So I think what we’re going to do is leave the inline suction on and attach the HME to the elbow of that. Hopefully it’ll work, because otherwise I think mummy is going to have a breakdown over the suctioning. We’ll have to figure out what to do with the suction when she’s on trach mask at another time. For now we don’t intend to use that much — disassembling the vent circuit while we’re by ourselves and trying to keep track of her is really not a great option.
It’s probably an even worse idea when we’re not alone and there with the nurse. I’m not going to get into too many details but suffice it to say she got very flustered on Wed and when the RT told her to reassemble the vent circuit after we finished with the trach mask it almost proved too much. She spent the rest of the day in a fog.
Dorrie with one of her preemie outfits.
She loves her tennis boys.
Posted: little fat fairy, moving forward... or not, nurse or no nurse, our little witch
13
July
2009
It’s hard to believe that it’s been two years since Miss D decided to join us on her own schedule. Like January/February, this is not a time of pleasant memories, and even at the best of moments I feel uneasy as we approach any “important” dates. I’ll be happier when we’re past it.
There’s not all that much of note to report this week, as we worked on getting back to our normal schedule following the long weekend. Dorrie continued to do very well with her prune food, and so we have now begun adding carrots to a different meal. If we can successfully introduce enough foods, we’ll be able to perhaps cut down on the amount of formula with the ultimate goal being to stop the overnight feeds altogether. I’m very hopeful that if we can manage this, it will lead to a big improvement in her sleeping.
We had some success during the week with getting her to take decent naps during the daytime, though this did not continue over the weekend, so I’m not sure what to think there.
We’re still waiting on word of the new chair/stroller arriving; I’m getting very impatient now. The stander is great, of course, but I see how well that fits her and I feel bad when we have to squash her into that tiny Tumbleform chair to sit.
Dorrie also received her birthday present from Grammy and Uncle Jonathan, which is a Little Tikes swing and slide. This is something which I had seen a picture of on another blog, and I thought it would be great for Dorrie. Both of the toys do not really require her to do much, so she can use them now with our help and hopefully play with them on her own some time in the future. So far, though, she is absolutely terrified of it and has added a new expression to her repertoire in its honor.
I don’t like this
HELP ME
And just to prove we don’t torture her all the time.
Posted: little fat fairy, moving forward... or not, our little witch
5
July
2009
This week saw Dorrie progressing more with her stander. The PT put some foam blocks on the tray so that it’s easier for her to keep her arms from falling back, and now she finds it easy to keep her hands where she can use them. Her goals so far seem limited to getting things close enough to gnaw on them, but hopefully they may expand over time.
The gnawing on everything continues — our hopes for a break in teething were dashed at the beginning of the week when it was discovered that tooth #16 was not canine #4 but rather 2-year molar #1. There are bumps elsewhere (including that last canine) so probably some more teeth will make their way out over the next few weeks.
Now that we seem finally to all be well again (aside from daddy’s continued coughing) we’ve changed up Dorrie’s diet slightly. We hope eventually to be able to stop using the formula we’ve been on for the past year — Neocate — and let her eat real food. Ideally through the mouth, but the fact is that this is not going to be happening very soon, so for now we’ll need to blend it up so it can go through her tube. The trick is to figure out what real foods she can tolerate and then craft a nutritious diet from them that won’t drive us mad trying to make it. We’ve started simple, and this week she is getting 2.5oz of baby food prunes in one of her feedings every day. If that doesn’t cause any digestive distress, we’ll try introducing something else in a week or two.
She also gnawed on some carrot in a mesh feeder bag. She didn’t seem to mind it, though probably we’ll hold off on doing that regularly while we’re attempting to experiment with introducing significant quantities of other foods.
Bonus Pictures — Miss Tubbo at this time last year. Seeing her every day, it really seems like she hasn’t changed much at all. A bit leaner, of course, but just so it’s noticeable. Until you look at pictures and you realize holy crap.
Posted: little fat fairy, moving forward... or not, our little witch
9
August
2008
Dorrie definitely seems to have inherited her mom and dad’s metabolism, which is both a good and a bad thing. Good because once we got her started gaining weight, she has not slowed down. Bad because for whatever reason, her length is still not keeping up with her body mass. Obesity is not great at any age.
This morning she tipped the scales at 20lbs 1oz, which means we are pretty soon going to have to think about getting her a new car seat. The problem: the next level of car seat is the convertible car seat, meaning the sort that can face rear and front. These are the kind of car seats that do not detach from the base to double as an infant carrier. For a normal baby that just means your average pain in the butt of hefting the kid into the car and out again. For Dorrie, with all of her tubes and equipment, it means we have to try and buckle her in carside while we also keep anything from disconnecting or becoming too stretched and thus pulling painfully on her body.
[Interrupting to eyeroll at Dubya checking his watch during the opening ceremonies. NICE.]
We’re also changing her feeding schedule a bit. For about 9 months now she’s been on q3 feedings, and with her constant puking we’ve been nervous about reducing the number of feeds and increasing the quantity of food she gets each time. First because, logically, more food = more likely to throw up, but also because less feeds = each throw up matters more. Result: paralysis. In any case, not that tube feedings are in any way ‘normal’, but perhaps if we spread them further apart she will start to develop more hunger pangs and a sense of when her belly is supposed to be filled. It should also give us a longer stretch of time where we feel she has digested enough food that she’s unlikely to return it. So this weekend begins the q4 feeding experiment, dropping from 8 feeds a day to 6. If it goes well, in a few weeks we’ll drop down one more, to 5 feedings a day.
Posted: little fat fairy, moving forward... or not, our little witch