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
26
July
2008
Things Dorrie likes to have in her mouth:
- Teal Soothies pacifier
- Blue Hippo
- Telephone rattle
- Glitter Baton rattle
- Breastmilk
- Ribbit frog
Things Dorrie does not like to have in her mouth:
- Pink Soothies pacifier
- Sweet Potato
- Pears
- Popsicle
- Ice cream
- Spaghettios sauce
- Chocolate frosting
- fingers
- Spoon
You may notice a trend in these lists.
In other news, Miss Dorrie has not been feeling well for the past few days. Looking back, it probably started on Wednesday when she fell asleep early for her nap (1:30) and slept away the entire afternoon, waking only for her bath at 5:30. She had a similar long nap on Thursday and then it was pretty clear by Thursday night that she was feeling blah. She had a slight fever on Friday morning, and though that was gone by noon, she was pretty tired and irritable for the rest of the day. She hasn’t required -more- suctioning than usual, but her secretions are definitely mucousy and not the usual spit. She had another long nap in the afternoon and really only woke up for a very short time before going down for the night. So far she seems to be doing ok with increased attention given to keeping her cool and some extra oxygen, but it’s hard to tell if things will get worse or better over the next couple of days.
Posted: moving forward... or not, our little witch, trying to stay healthy
17
July
2008
Miss Dorrie is chronologically one today! (Officially at 6:20 PM Eastern)
She’s come a long way in a year, though we still have quite a ways to go before she catches up with both her chronological and gestational peers.
Here’s a bit of a year in review.
On 7/17/07, Dorrie was born weighing 1lb 5oz:
At 1 month, she was on the conventional vent and getting kangarooed by daddy.
At 2 months, she lost her fight with the opthamologist and had to have surgery the next day.
At 3 months, she was reintubated after 2.5 weeks on CPAP due to high CO2.
At 4 months, she was on high-flow and trying to hide from the camera.
At 5 months (and daddy’s birthday), she was forced to model dresses.
At 6 months, she was hanging out at home with dad.
At 7 months, she was on her way to get a Synagis shot.
At 8 months, she was waking up after a month of sedation with a new trach.
At 9 months, she was stylin’ on the hospital floor with her toys.
At 10 months, she was sitting in her bouncy chair at home.
At 11 months, she was pretty in yellow.
At one, she was ready to bop you in the nose.
And, a couple of bonus pictures. First, Dorrie and daddy in the hospital (April).
And the Return of Blue Hippo! (8 months adjusted).
Posted: moving forward... or not, our little witch
16
June
2008
Weight: 7.74 kg
Length: 60.5 cm (no change :| )
Head: 43.25cm
So even with all the puking she still managed to gain half a pound in the past 2 weeks. Which is good and makes me a bit less worried over it. But it’s still going to drive us mad. At least we’re down to 2-3 pukes a day for the past few days, which is a vast improvement. Now we just have to get her volume back up to where it was and her pump speed to where it was (we lowered the speed to see if we could match her rate of digestion, and it seemed to help, but it was making feeds near continuous. We lowered the volume also by condensing the formula — instead of 80Kcal/4oz it was 80Kcal/3oz. As of right now, we’re up to 75cc/hour, so her condensed feeds are taking about 90-100m, still annoying but not in comparison to the 130-140m we had earlier in the week.)
Posted: little fat fairy, moving forward... or not, our little witch
8
June
2008
A pleasant title, no? But that is what we’ve been dealing with this weekend.
The heat wave that was rolling over the country finally reached us on Saturday and it’s been a sauna since. And it’s not even 90 here yet (according to the car). The AC is already having trouble keeping up with the heat generated by all of Dorrie’s equipment, and I shudder to think what late July and August are going to be like. For her part, Dorrie has been spending her day in the buff, and yesterday I bought a cooling pad which we can place in her bed to keep her back from getting overheated. No such luck for mom and dad, though.
On Friday, we switched over to NeoCate for Dorrie’s food. NeoCate is an amino acid based formula, meaning that it’s supposed to be even easier to digest than breastmilk and is hypoallergenic so it shouldn’t cause any kind of inflammatory reaction in the gut. Except that she’s been puking at nearly every feed, and we don’t know if it’s just because of the heat or because she doesn’t tolerate the NeoCate or because she needs a little longer to get used to it. We are going to try adding a bit more SimplyThick to it (the formula is much thinner than breastmilk) to see if that helps, but if she won’t keep it down, I’m just not sure what we’re going to do.
And to top it off the area around her G-Tube has been making belly boogers again. This is discharge and goo that comes out of the stoma and then dries around below the plastic tube and irritates her skin. It’s quite unpleasant and we’re not sure if that might not be contributing to the puking also. We’ve pulled out the bacitracin again to try and see if a bit of antibiotic might help matters.
In other news, the nurse did not bother to show up or call on Friday, nor did she actually contact the nursing agency as far as we know. So we aren’t sure what’s up with that. Especially interesting is that Dr. Optimist came on Friday again and naturally asked where the nurse was, so I told her. I’m not sure anything will come of that (more likely she will get in trouble as the agency knows she didn’t show — Bob called to find out if she had called in sick) but I am finding having the nurse here during the day gets more and more on my nerves as time goes on.
Posted: medical morons, moving forward... or not, our little witch
26
May
2008
Feeding and digestion issues are as common with micropreemies as respiratory problems, and Dorrie has been no exception. From day one, where her esophagus was perforated, making her unable to eat anything for 2+ weeks while it healed, she has had her struggles with food and feeding. We haven’t faced the nightmare of gut-related issues that some have (and believe me, after watching what Dorrie’s ICN buddy and his parents have had to face, we dodged a real bullet there), but even with good growth and regular pooping, it hasn’t been easy for her.
After finally starting to get breastmilk in mid-August, her calories were slowly bumped up from 20Kcal/oz (regular breastmilk) to 24KCal (breastmilk + HMF), to 27KCal (breastmilk + HMF + NeoSure), to 30KCal (breastmilk + HMF + NeoSure + Olive Oil). She stayed on that concoction until around Thanksgiving, when we first dropped the olive oil, then replaced the HMF with more NeoSure, then finally dropped back down to just 24KCal (breastmilk + NeoSure). Around that same time we also added SimplyThick to help with her reflux. That’s what we came home on.
She’d always had a lot of gassiness, and she’d always occasionally thrown up a feed, but right around the beginning of April, while she was still in the PICU after her tracheostomy, she started throwing up a lot, and the gas attacks started to get worse — she’d be more upset by them, and for a longer period of time. When we finally came home at the end of April, we started keeping track of the pukies in a Google Spreadsheet (also linked in the sidebar) to see if there were any trends. The first trend that emerged was that her worst feed was the one at 9am/9pm. For some reason the combination of meds in that feed were making her throw up way more often than the others. So we tinkered with that and improved it a bit. But the gas was still horrible and was having other consequences: a gas attack will cause her to hold her breath while she tries to push the gas out, leading to desats and needing increased amounts of O2 to hold her sats at a reasonable level; it wakes her up from even the deepest of sleeps and makes it difficult for her to rest properly.
After reading about other preemie parents’ struggles with throwing up and feeding issues, I really didn’t want to keep going until this became a bigger problem than it needed to be. I thought part of the issue was probably the NeoSure — maybe she was having a reaction to the cow milk in it, or maybe there was something else in there that her body just couldn’t tolerate any longer. So we discontinued using the NeoSure to fortify the breastmilk.
Since then, we’ve seen a decrease in the amount of puking, though not a complete elimination of it. The biggest change is that the gas is no longer as awful as it was. She still has the attacks, and they still bother her, but they seem to be less frequent and they don’t last nearly as long. I consider the experiment a success.
Unfortunately, to keep her getting the proper number of calories to grow, we’ve had to increase the amount of breastmilk she’s getting, causing us to whip through the frozen breastmilk even faster than we had been. That means in the next couple of weeks or so, we’ll be out of frozen altogether, and since I had to cut back milk production due to storage issues way back in September, I no longer produce enough in a day for all of her meals.
So we’ll be having to switch her over to formula soon. Dr. Optimist immediately suggested we use NeoCate, much to my relief, since that’s what I was going to ask for us to use. I’m worried about how she’ll tolerate it, but cautiously optimistic that she won’t have a bad reaction. If she does tolerate it well, it will mean an end to pumping for me. And after 10+ months, let me say that getting back that 2-3 hours I spend doing it every day will be a HUGE relief. (And not just for me.)
On other fronts, we’ve also started trying Dorrie out on some solids. She’ll be 7mo. adjusted next week, and though she probably is not really ready for solids (she is nowhere near able to sit up on her own, and she hasn’t really shown any clear interest in eating), I think it’s a good idea to start trying to get her used to having food in her mouth. The goal right now is not for her to consume massive quantities (To get all of her calories from solids, Dorrie would need to eat about 15 jars of baby food every day) but to stimulate her mouth and make her more receptive to food. While she doesn’t seem to have an oral aversion, I have noticed that she is cautious about putting certain things into her mouth. She loves her pacifier, she’ll chew on Blue Hippo or her caterpillar, but when her fingers come up to her mouth? She makes a hideous face and moves them out again.
Posted: little fat fairy, moving forward... or not, our little witch
2
May
2008
So we are home again and have been since Tuesday. Cross fingers, but so far things are going as well as can be expected. Our new daytime nurse seems okay, though I don’t think she quite realizes that having her here is not precisely a relief. We have her here because it is safer for Dorrie if there are always at least two people in the house with her. (Occasionally we do not follow this rule and people will pop out to the store leaving just one person with Dorrie, but 98% of the time there are always two people here.) But having another person, a stranger, in here with me all day every day is incredibly stressful.
Most people get to go to the hospital, have their baby, and in a day or two bring them home and then start raising them as they see fit. There are occasional checkups, but for the most part they are unsupervised and experience little interference with what they’re trying to do. We’ve had none of that. 8 months of Dorrie’s life has been spent in the hospital with a veritable army of doctors and nurses telling us how much she could eat, what she could wear, when she could have a bath, when we could hold her and so forth. Being at home gets us away from that, but not entirely, because, you see, we still have this person here.
It is always a relief when she leaves. I can spend time with Dorrie without feeling like I have to keep an eye on the nurse or find things for her to do.
Today we did our first trach change at home; it was quite scary, because for some reason we had a lot more blood during the change than I’ve ever seen before. The new trach also did not go in very easily, and I hate feeling like I’m shoving it in. I’m afraid I’m going to puncture something. (And for us, this is not just a worry out of the blue. The ICN people managed to perforate her esophagus right when she was born trying to put a tube into it.)
Dr. Optimist came down in the morning for a home visit, which was nice. It’s possible to get Dorrie and all of her gear into the car, but it is neither simple nor fun, so having the doctor come to us was a big plus. She brought with her the trach tube we later used for the change — we had come home with a trach we thought belonged to her, until on Wed the hospital called us in a tizzy because no, this one was not Dorrie’s, it belonged to L., another long term ICN resident (a July baby like Dorrie). This was not the first time their trach tubes had gotten mixed up, but it was really worrisome that it happened more than once even after everyone was aware of the fact that they were so easily confused.
The outpatient nurse will come down once she is back from vacation (she was unable to come home with us because of that, but we didn’t really want to wait until May 12th to leave the hospital) and then probably she and Dr. Optimist will visit again later in the month. Then we will have to go back up to CHaD for some followup appointments in June and see everyone and their uncle. They’ve been in communication with Dorrie’s ped, but I’m assuming we’re going to have to go and visit him at some point.
Posted: moving forward... or not, our little witch
28
April
2008
So, tomorrow morning we’re headed home. I guess it goes without saying that I’m looking forward to it. While on the one hand it means that we’re back to doing all of her care, back to sleeping in shifts, and back to the rigmarole of packing her and 60 pounds of gear into the car every time we have to take her anywhere (which will happen about once every week or so for a while, I have no doubt), I have a feeling that she’s going to do a lot better this time around. For one thing, we’re out of the cold and flu season, so hopefully keeping her healthy will be easier. For another, we no longer have to live in terror that she’s going to go into a death spell from having a tiny bit of reflux, if the number of times she’s thrown up while laying on her back here in the hospital without problem is any indication.
Mind you, I’m not quite as excited about the new equipment we’re going home with. The vent itself isn’t that awful, but it’s definitely bulky — it’s about the size of a laser disc player, I would say. But with any luck, we won’t actually need it for that long — once Dorrie’s pressure need comes down further, we can try her out with just a trach collar, at which point we’re more or less back where we were before as far as equipment is concerned.
Speaking of the trach, while on the one hand the extra care is a nuisance, I do still feel that it will be worth it to be able to do things with Dorrie that we were afraid to do before. She can try out her little chair swing, she can spend time sitting up in her Boppy, we can let her enjoy her tubby time more… except for the fairly heavy plastic tubing connecting her to the vent, we can pretty much start doing more normal baby things with her. Definitely worth the few minutes per day it’ll take to wash her neck and change her trach ties, and occasionally change and clean the trachs themselves.
Of course, there is still the drive home to contend with. We had a dry run yesterday of getting her and all of her equipment down to the car and put in, so we know everything fits, as well as what is involved in getting it there. The only thing we didn’t get a chance to do was try her out in her car seat again, to see if she would tolerate the ride. However, she has tolerated sitting up for long periods since we got here (the OT had her sitting in a foam chair much like a car seat, and she liked it so much she slept in it for much of the afternoon), so I don’t expect any problems.
Posted: moving forward... or not
19
April
2008
Way back when Dorrie was still in the ICN, we had our first adventure with trying to get her in to see audiology after her hearing screening tests would not give us a result. It took us a great deal of wrangling to get down there at all, and of course, the trip did very little since she was upset and uncooperative by the time the test was ready to occur. Our second test was a few weeks later, and sedated, after snow allowed some cancellations. At the time, the results were inconclusive, and the main result was that she had tubes placed in her ears when she got her G-tube put in.
She was supposed to have a follow up hearing test about two weeks after the tubes had gone in, but we weren’t able to get another appointment before we went home. And then our second appointment didn’t happen because Dorrie was not feeling like going in the car on the day it was to take place. So since we’ve been here and she’s been on the road to recovery, we’ve been harrassing our doctors to harrass audiology to try and get us in before we leave once more.
It seemed like it might not happen, and we’d even gone so far as to make a regular appointment in June, but suddenly on Thursday they called up and within an hour someone was here to try and repeat her ABR test. We gave her a bunch of versed to try and quiet her down enough to do it, and for a while it seemed like she wasn’t going to let us, but at the last possible moment she went to sleep and the test was successfully performed.
The result was that the ABR patterns observed suggest that she has auditory neuropathy (also called auditory dis-synchrony). Unfortunately, that’s all they can tell from the patterns; they do not know how to read them to judge if she has any associated hearing loss, the severity of the AD/AN, or anything else. The diagnosis is very specific and yet extremely vague at the same time — it boils down to: we’re pretty sure she can hear sounds, but we don’t know how well she hears them or when she does, what she hears (ie, if what her brain is told is what the sound actually was). And we can’t really find out until she gets old enough to indicate these things to us.
It’s possible an MRI of her ears might give us some more information, but we haven’t talked to the ENT yet (he was on vacation last week) to hear what his opinion about physical causes might be. We’ll have a follow up visit with audiology over the summer sometime to see if we can get any more information. She may be old enough by that point to at least look in the direction of sounds to let us know she’s hearing them.
Posted: moving forward... or not, our little witch, trying to stay healthy
31
March
2008
There isn’t much to report at the moment. We are still in the PICU. Dorrie has made some progress with weaning off of everything she was on — the sedatives, the hydrocortisone and the vent. The ENT has changed out her trach once, which means it’s now cleared to have people other than him do it.
I finally got to hold her today for the third time since we got here (and the first time in a month.) The morphine is messing with her poor little GI tract the same way it did last time, giving her a hard time getting the poops out and making her fairly uncomfortable. It’s so difficult to help her now that she can’t make noise; you have to actually be looking at her to even realize that she’s upset, unless she manages to get upset enough to make an alarm go off.
Her O2 has been steady at 40% for quite some time now and is a relatively good measure while they try and wean other settings. I was absent for much of the weekend, as I had to work all day on Saturday and slept in/overslept on Sunday, and at rounds today it was discovered that pretty much nothing had been done all weekend with respect to weaning… anything. She was still on the same morphine and ativan as she had been on Friday. The NP who had been here Friday and I couldn’t figure out what the heck had happened, except that it appeared that the nurses totally slacked off all weekend and failed to keep any withdrawal scores. I am rather irritated that we’ve lost two days of weaning and could be that much closer to being done with this crap, but there’s not much that can be done about it now. I have no opinion of last night’s nurse, who apparently not only did not take down withdrawal scores but, even more annoyingly, came up with ridiculous measurements and didn’t bother to check and see if they made the least bit of sense. I rather doubt that Dorrie has shrunk 3″ in this past week.
Today she had a visit from the therapist from the ICN who is covering PICU this week while the normal therapist is on vacation. She had a good time sitting up and moving around and seemed to really enjoy being stretched and rotated. I’m sure she’s pretty darn sick of the crib and being on her back. She had a good nurse Friday who found her a baby sized hospital gown to wear, so she’s been partially dressed now for a few days, rather than just lying around in her diaper. If she behaves herself over the next few days, I may have some luck getting them to let us put her in clothes.
Posted: little fat fairy, moving forward... or not, our little witch