Wednesday, April 29, 2009

Long day, good report.

We had a long day of medical appointments a couple of hours away. It was a day I didn't even want to do, because of just the risk I felt there was in going to that big hospital, being around sick kiddos all day, and I had already rescheduled these from a couple of months ago, to avoid being there during cold/flu season. Yet here we are, still flu season! If you know me in real life, you know there was some drama today at that very same hospital. New cameras all around the hospital exits when we left, including CNN. As Hannah says, there is a family today that needs our prayer. It is a sad thing to have a death of your loved child become the latest media excitement.

We saw renal doctor, cardiologist, and Physical Medicine and Rehab. The "big" one was cardiologist, but that's only because that one, for some reason, tends to make me a little nervous. We have had some funny interactions in the past (not recent past, though) where it felt that "silly ideas" I would share came across to that doctor like challenges. Or something. Like when I wondered aloud to a resident who came in and gathered information before the actual doctor came in, if her sudden need for oxygen 24/7 in that month, was cardiac. Because I was "sure" it wasn't respiratory. Obviously (though I can't remember how he explained it), I was wrong, but when he entered the room after hearing the report, he stood in a spread-legged stance, a smirk on his face, arms crossed over his chest, and asked, "So why do you think this is cardiac?" And pointed out that we had the nasal cannula positioned incorrectly. (I'm a nurse, and I know the prongs point upward into the nostrils, but for Mal at that time, with her cleft lip, we found it was more effective and less distressing to her if we positioned both prongs of extra small nasal cannula into the cleft, instead of trying to push both into asymetric nostrils. He was very impressed with how we adapted to her unique anatomy. Not.)

And once he played "devil's advocate" with me on the issue of genetic testing, and the sense of providing large amounts of medical care on someone "likely to not live long," and advised me that I seemed to think that because we lived in this country, there is no limit to resources. And reminded me that there is a limit to resources, even if I am confused about that. And he asked me what insurance Mallorie had! The answer I gave must have not gone along with his argument, so he never pursued that thread, and eventually he exclaimed, "We might as well stop this. It's like arguing religion. You can't argue these kinds of things."

Well, no, actually. You can't argue things like value to the life of a person who is nonverbal, cannot walk, feed by mouth, etc, and may never be able to do any of those things. You believe a life is valuable, or you do not. He's right, it is like religion, or faith in God. You can't be "argued" into such beliefs. I was glad he decided to quit, because I was really close to tears, and that wouldn't have been very helpful (for me). I remember at one point thinking (and saying) that no baby is born being able to do speak, walk, or self-feed, and no child is born with a guarantee of a certain lifespan. Yet at birth no one questions the right an infant has to medically necessary care.

Unless they are disabled. Particularly if the disability is associated with a rather high statistical risk for death. (Though I wonder how much the statistics are impacted by choices encouraged, and choices made, during the pregnancy and after birth. By medical professionals, and by frightened and vulnerable families.) Did I ever mention it took 2 days for Mallorie to get the surgery to close her back, after the bulging area from her spine had opened in delivery? Two days during which we were asked if we really understood what we were asking to have done? Because if she lived, after the back was closed, she might need another surgery later? Not touching on the point that not closing her spine would mean certain death? Two days of repeated urging to agree to genetic testing, because knowing what was wrong with Mallorie could help the surgeons decide what interventions they felt would be appropriate?

It was a random and meaningless point I was making, really, but it struck me at the time that Mallorie was born with pretty much the same needs and limitations as any other infant. It's her "potential" that seems to be the big point if you are questioning her right to care. Is it worth offering her a surgery, if she might die in a month or a year? What if she is not expected to ever grow up to be able to carry her own weight in this world and contribute meaningfully to society? Whatever that means.

It was a weird, and unsettling visit that day. I wondered, for a few days, after leaving that visit, if we had her under the care of the right cardiologist, if he was able to argue the "devil's advocate" position so well. But this man has never, ever indicated that he would not do surgery on Mallorie's heart, if she should need it. In fact, on our first visit to his office, he tentatively scheduled the PDA ligation procedure for a couple of months away, provided she could reach the 10 lb weight that is standard for that procedure. He only cancelled it when she showed up at the next visit and he couldn't hear the murmur associated with that hole, and the heart echocardiogram confirmed it was closed. So even if he actually believed some of the points he argued so well with me that day, he doesn't appear to let them influence his decisions about providing Mallorie whatever care she might need. And he truly might just have been speaking hypothetically, anyway.

But I do feel the need to be emotionally "ready" for those visits. And like to be early, even though we've waited a few hours past the scheduled visit time in his waiting room, more than once. I just like to be ready and without a need to defend myself when we go to that appointment.

And with Mallorie being still down in weight, from her recent gastrointestinal illnesses, I already expected some discussion about her intake. Can I just say that I absolutely, unequivocably believe this man's ideas? Once upon a time I had issue with the adding of formula powder (for extra calories) to her breastmilk tube feedings, because it didn't seem "natural" and I felt it contributed to her serious, scary diaper rashes. But over time, as her heart has continued changing, he has become one of my heroes. Not every cardiologist is so insistant about giving heart babies concentrated feedings, but this man never let it rest, and would use his watch calculator to quickly calculate how much she was ingesting, and how much it came short of his goal for her by her weight. On every visit. I absolutely believe he is one of the reasons Mallorie has done so very well, heart-wise, so the issue isn't that I just disagree with him.

Anyway, since she first started getting sick this winter, Mal's weight has dropped from her former 22 lbs to about 20.5 lbs, and I expected to be grilled about her caloric intake, and to have to explain/defend the fact that she's not gaining the weight back more quickly. He has really stressed to us that she needs (his estimate, even though he doesn't take into account her inability to move, and lack of big muscle groups) at least 900 calories a day. We just can't get even close to that number, without overstuffing Mallorie, and causing vomiting. She seems to be really settled on a lower weight right now, and our main goal these days has been getting enough fluids in her to keep away our friends, gagging & vomiting, ever since we realized low fluid intake and the gagging were connected. And we've had great success in this area, I might add. And we have realized that since she is at this lower weight, her apnea is amazingly improved. Still needs the caffeine, but has not needed oxygen at night in a couple of months! We think the weight is a factor, because at 22 lbs, she actually looked uncomfortable, and moved less. She is getting baby foods (through her tube in her tummy) and some goofy, fun supplements like fruit vegetable "green" smoothies with algae, wheat grass, etc., aloe vera juice, probiotics. She seems really alert and energetic, and we're excited about how healthy she seems.

But I forgot about the scheduled cardiology appointment, and how her weight would probably be a big issue. She weighed in at 20 lbs, with her clothes on! Then she got chest x-rays, as usual. The cardiologist came in beaming. He said her x-rays were amazing. Her heart, which had been enlarged all along, is no longer enlarged, and if he didn't know anything else about her, he'd have said she was a baby with NO heart issues at all. "And she looks great!" He listened to her chest, but as ALWAYS happens when she gets there, she suddenly had nasal congestion, which made him unsure if he heard a murmur or not. In the past, he has sometimes thought he did not hear a murmur, because of the congestion, and then the heart echo will show a large VSD. But he kept saying he feels so sure her VSD is closing, and that he wants to discontinue her digoxin and wean her off her lasix, and try getting her off potassium and sodium supplements that we have to add to all her fluids. He is that sure her heart is improving as she grows. "I just don't think she needs them anymore." He scheduled us for a heart echo this Friday to actually see what her heart looks like.

And as ready as I was to cloud the calorie issue with stories of algae-pureedbabyfood-aloeverajuice-acidophilus-didImentionalgae? .... not one word was discussed about her food intake, because, well, ... she is doing so great!

But can I just say now, because it didn't come up in that "dietary report" that just never was needed, that I believe in my heart that Mallorie's good health and quick recovery from all those winter illnesses is because of DONOR breastmilk she has been able to have, when my own supply dropped? She had such severe problems with the formulas we tried last year, and ultimately we learned this amazing secret, that there are moms out there willing to share some of their excess milk with babies in need. I believe this incredibly healthy gift is what has caused Mallorie to bounce back from the illnesses this winter, and allowed her to be well-nourished, even when she's not sporting a 22 lb figure.

And I will always, always, always be grateful to Mallorie's "milk mommies" for generously sharing their milk with her. It is such an amazing gift. But that is another post, entirely.

And I am so grateful to all of you who have prayed her through these past two years.

Thursday, April 23, 2009

Annabel and Cathy needing prayer

Annabel and Cathy spent the night in the local ER, and are waiting on a bed to open up at the hospital she JUST left yesterday, so Annabel can be transferred there.

Cathy says Annabel seems better, ever since she vomited upon arrival to the ER last night, but the results of the testing they've done in the ER concern the doctor. Even though Annabel has been sleeping peacefully, Cathy is beyond exhausted. She so very much doesn't want to have to go right back to Houston, but it looks like that is the plan. A friend stayed with Annabel this morning so Cathy could run home to pack for yet another hospital stay. She was up all night.

I know she doesn't have internet access in an ER room, and since she's never slept, I have no idea when she will be able to put anything on her blog.

But if you read this, please pray for sweet Annabel and Cathy.

Wednesday, April 22, 2009

Can anyone explain this?

Mallorie will NOT take anything by mouth, most of the time. She sort of decided she liked food in November, and one time gobbled half of a stage 2 baby food jar, and was doing fairly well ... when she was in the mood for it ... with drinking milk from a bottle.

And then she had her brief intubation fun in January, and got almost so she didn't want us even squirting liquids in her mouth again. For sure, she wasn't having anything rigid like a syringe near her face, and forget bottles. Nothing resembling food in the mouth. One time I thought she might want to taste a speck of real banana and she gagged before I could count to 1, and barfed her tummy up. I get that; stuff in her mouth (we were suctioning her airway the entire night she spent AWAKE with that tube in her throat) she now associates with gagging and discomfort. So I decided we would back up, not push it. She has years to work on it.

A month or so ago, Becca, her speech therapist, announced that she was ready to work with Mal on feeding by mouth. What did I think she would like to try? Applesauce? Yogurt? Pudding? Right.

That night, I got a container of ready-made pudding, and after several minutes of persistence, she started licking and sucking it off the spoon, and ate almost 1/2 the container. I snapped a picture with the cell to send to Becca, and while it was sending, she barfed it all up. Then ate almost all that was left in the container. And barfed. I attributed that to her whole dairy issue. Anything dairy (formula, whey protein, cheese in baby food) seems to make her vomit and also gives her that nice bleeding diaper rash that just screams no-one-taking-care-of-this-baby.

So we got a package of instant pudding mix, which didn't have any recognizable dairy in the ingredients list. Mixed it with breastmilk, and ended up with thin yellow liquid. Then I remembered reading that breastmilk won't thicken with Thick-It, either, so I assume it was the enzymes in the milk digesting whatever starch is supposed to thicken the pudding. She also didn't seem to even like the taste of what was dripped onto her lips.

So we though about soy milk, which she tolerated during a recent GI illness. Added to the soy milk the sodium and potassium that she needs to have in her liquids, and mixed it with pudding mix on the way to therapy. Never thickened. I tasted it - ghastly! Salty and bitter and just plain liquid yellow foulness. She let Becca spoonfeed her the liquid gunk, and licked her lips. Go figure. Not gonna help her get more comfortable with thicker foods, but it's something by spoon, in her mouth.

I was pushing a syringe of babyfood into her tube a couple of nights ago, and it smelled so good that I thought she might like a taste. She did. And then she sensed a "speck" of pea skin or something and gave it right back.

So I gave up the argument, and planned to let Becca do all the magic, and reminded myself ... she has the rest of her life to get this figured out.

But ... sometimes if this cute girl is sick and running a fever, and the moon is in the right phase, and Hannah is around, sometimes Mallorie will grab a bottle and down 60 cc (2 ounces) in just a few minutes. No gagging, no turning her head away, nothing.

I can pretty much promise you, tomorrow, she will refuse it again, and probably gag and puke.

But today, I smell photo opportunity.

Jacob came up to me a minute ago. "Can you tell me 6 words that mean jail?"


"Six words that mean the same thing as jail."

Um, prison, pen ....


Pen, short for penitentiary.

"No, 6 words that I know. That mean jail."


"I gave you a hint. J... J... Mommy, I already said the word."

Oh, yeah, prison, jail.


I can't think of any more.

"OK, want me to tell you? Jail, prison, slammer, juvenile detention, juvie."

Who teaches them these things?