Homecoming

The echo from yesterday afternoon shows Ainsleigh's ductus all but
closed; there's just the barest squirt of blood flow through it, and
they think it's on a trajectory that will have it completely closed
over the next few days. As it has closed, not only has the aortic
coarctation not gotten any worse, but it has actually vanished
completely. Blood flow through her aorta is now entirely normal.

This wasn't really supposed to happen; I'm inclined to use the word
"miracle" myself, but won't hold you to this description. What we do
know is that the inside of her aorta, just below the junction with her
left subclavian artery, had a clearly visible obstruction on Friday,
Sunday, and Tuesday that was clearly not present on Thursday. Call
that whatever you want.

Anyway, soon after the echo our cardiologist pronounced Ainsleigh
healthy and ready to come home. After some paperwork and infant CPR
training, we left the hospital at about 6:15 yesterday afternoon. By
7:00 we had our daughter at home --- still two days before she was
technically "due" to be born. We have some follow up to do with
cardiology (she's still got those septal defects, for instance), but
she appears to be healthy and happy to be at home.

The Hardest Part

A technician is going to echo Ainsleigh's heart again today. When she's done, she'll write a report. Then a pediatric cardiologist is going to read the report and examine the images from the echo and decide whether he thinks the ductus is still open and whether he believes that the coarctation is a problem.  If the latter remains unclear, he may consult a few other cardiologists.  When he's got a Final Answer, he'll report the answer to a neonatologist, who will report it to a nurse practitioner, who will report it to Ainsleigh's bedside nurse, who will report it to Sarah, who in turn will call and report it to me.  Whatever the results are, I think I can handle it.  But the waiting for information to trickle all the way down to me is simply excruciating.

Voice Mail Etiquette

Its very important, when one's loved ones are hospitalized, that phone messages from doctors and other hospital staff are carefully worded.  Most of the actual medical personnel with whom we've dealt have been really good about this.  On Friday, for instance, our neonatologist at St. Mark's called to warn us about the impending transfer to Primary.  (It turns out that I didn't get the message until after I turned up at the hospital, but that's neither here nor there.)  As always, her words were "Hi, it's Dr. Liu;  Ainsleigh is fine, but I need you to call me."  That middle clause is critical, because the doctor knows that without it, the message "Hi, it's Dr. Liu; I need you to call me" is nothing short of terrifying.  Unfortunately, other hospital staff have been...less consistent.  Last night I arrived home and got this message:  "This is Kristi at PCMC.  We need to talk about your health insurance.  I'm in the office from 7am to noon tomorrow." 

Context: the other day we got a bill for Sarah's stay in St. Mark's that totalled almost $11,000.  And that was for four days in a hotel-type room with a visit from a nurse every four hours. By contrast, Miss Ainsleigh's experience to date entails: eleven days in the St. Mark's NICU; five days (and counting) in the PCMC NICU; the more-or-less constant presence of a registered nurse, a nurse practitioner, and a neonatologist for that entire time; the services of at least four (and possibly as many as seven) different pediatric cardiologists; four echocardiograms (and counting); LifeFlight transfer from St. Mark's to Primary; and various attendant expenses like IV antibiotics, supplemental oxygen, diapers, formula, etc.  There is no doubt in my mind that Ainsleigh's total hospital bill already far exceeds $100,000.  Now, this is OK, because the U supplements my absurdly low salary with a top-shelf health insurance plan for my whole family. But under these circumstances it's not exactly good for my mental health to hear that "we need to talk" about my health insurance. 

Postscript: Lest anybody get the wrong idea, all turned out well in the end.  (Better, by about $1000, than I actually expected.)  This post is purely about the avoidably heart-stopping nature of the phone message.

The Kid's Got A Lot Of Heart

For those of you lucky enough to have escaped the "constantly pester" level of my email distro list, here follows a little status report.  Un/fortunately, we didn't get to bring Miss Ainsleigh home with us as planned last weekend.  Rather, I arrived at St. Mark's at 5:30 Friday afternoon to find that my daughter had been put on a ventilator and transferred into the most-critical-care section of NICU.  I was, shall we say, surprised.

There began a long and scary evening in which Ainsleigh was transferred from the hospital she was born in to the Intermountain Primary Children's Medical Center.   Upon arrival at primary very late Friday night, we learned that our daughter has sort of a congenital heart defect combo plate.  Some of the problems are minor: she has both atrial and ventricular septal defects (basically little holes that allow blood to flow from one side of her heart to the other) that the doctors think will resolve themselves as she gets older. 

One of the problems is not (or, I should say, has the potential to not be) so minor.  She has a small coarctation of her aorta; this is a little bump of tissue on the inside of her aorta that impedes blood flow to her lower body.  To date, she has adequate blood flow past the coarc and is OK.  But she also has a "patent ductus arteriosis", meaning that the fetal blood vessel connecting her pulmonary artery and her aorta hasn't closed yet.  When this vessel closes, it often causes a small narrowing of the aorta at the point where the two come together.  Trouble is, the ductus joins the aorta right across from the existing aortic coarc; thus, the narrowing of the aorta associated with the closure of the ductus may exacerbate the coarctation and cause a critical problem with the blood supply to her lower body.

At the moment there's no clear consensus among the pediatric cardiology staff as to how likely this is to happen.  On Sunday, two doctors wanted to release her.  On Monday, however, another group of doctors came on shift and decided that she should stay in hospital until the ductus is completely closed.  Their logic is that the closure of the ductus probably won't cause a critical problem, but that with the stakes involved here "probably" just isn't good enough. We were told Tuesday that if the coarc does become crtical when the ductus closes, she might go from OK to terminal in as little as fifteen minutes.  If that happens while she's at home, she'll almost certainly die.  So they feel like they've just got to keep her there, and keep examining her, until they see that the ductus is completely closed and blood flow past the coarc remains adequate.

Nobody's quite sure when that will be.  Since her transfer to Primary Children's Hospital, she's had three echoes: overnight Friday/Satruday, Sunday morning, and Tuesday morning.  All still show an open ductus, and there wasn't any significant narrowing of the ductus between Sunday and Tuesday.  They're going to look again Thursday; if the ductus isn't on its way to closed by then, they'll talk about administering drugs that will force it to close under controlled circumstances.  Once the ductus has closed, we'll be able to make a final decision on whether to take her home right away or go ahead with the surgery to remove the coarctation.  I should emphasize here that the former (happy homecoming) is a lot more likely than the latter (surgery).

In the meantime, Ainsleigh looks good and seems happy, while her mother and I engage in that least satisfying of human pursuits: waiting.

Eight Of Nine

As of this morning, Miss Ainsleigh has finished eight of her past nine feedings --- 8:00 AM yesterday through 8:00 AM today, with the sole exception of a tube feeding at 5:00 AM this morning.  For a week and a half, the doctors and nurses all told us that one day she's "wake up" and be ready to face the world.  It's starting to look as though Tuesdy, 13 March 07, was that day.

Of course, she's got to go entirely without the feeding tube and entirely without supplemental oxygen for 2-3 days before she can come home.  So we're still talking Saturday/Sunday at the earliest.  But things are really looking up.

Another Apology

Sorry about the stagnation on the Flickr page.  There are more pictures, including some of my parents with the baby.  Unfortunately, my return to work has derailed the photo loading/editing/posting process.  I hope to find time to get the new pictures up in the next few days, but it might be the weekend.

Some Other Things

I'd like to note here that it's not my intention to use these postings or my various mass mailings as an excuse to not respond personally to each of you.  I have a very impressive pile of emails (not to mention snail-mail cards and notes), and I'll respond to each and every one of them in time.  How much time I can't say, though, so please just bear with me on this.

Last Night And This Morning

This is all three-steps-forward-and-two-steps-back stuff.  As I mentioned yesterday, Ainsleigh was doing really, really well at 8:00 Monday morning.  The nurse said that she'd had a little fever overnight Sunday, but she nonetheless looked good, was breathing easily, and took all of her breakfast in record time.  Then, through the day, she worsened somewhat.  By 5:00 yesterday afternoon, she was visibly struggling to breathe; in fact her breaths seemed more like panting than anything else.  She also refused to take any food, and squirmed uncomfortably the whole time I held her. 

I was pretty unhappy when I left her yesterday afternoon, but things have been looking up again since then.  At 8:00 last night she was back on supplemental oxygen and sound asleep, but her breathing was slow and regular and she seemed to be resting comfortably.  Then this morning she looked great again; she was more awake than ever, breathing easily without extra oxygen, and took every drop of her breakfast.  Though she sneezed a few times, she seems comfortable and happy today.  Once again, I'm hopeful that this will be a Good Day, and that tomorrow...will sort itself out when it gets here. 

One day at a time.

One Day At A Time

Of course, the most frustrating thing is that there's really nothing to be done.  Perhaps her current symptoms will finally lead the doctors to an underlying cause for her condition.  In the meantime, though, there's naught for us to do but bear up under the strain of this thing.  It is, in word, trying.  It's the most trying thing, in fact, that I've ever been through.  Under these conditions I comfort myself with a single, relentless mental refrain: one day at a time.

So.  I'd be lying if I said that this isn't an ordeal, and that the unchanging and seemingly inexplicable condition of Miss Ainsleigh wasn't discouraging.  But my faith fills me with a perfectly irrational confidence that this, too, shall pass.  Ainsleigh's largely healthy, and she is (ahem) beautiful.  And every day we minute we get to spend with her between now and the 24th is a bonus minute. 

A Very Small Bit Of Actual New Information

As I mentioned below, on Thursday afternoon we were hopeful that an extra couple of days in the hospital boarding room would enable Sarah and Ainsleigh to come home together on Sunday.  That, I am sorry to say, turned out not to be the case.  It is now Monday afternoon, about a week and two hours (give or take a weird government-mandated time change) since Miss Ainsleigh's birth, and she remains in NICU.  The criteria for releasing her from NICU remain the same: she must be completely off of supplemental oxygen, and she must be able to take all of her nutrition from a bottle (ie, she must have no more need for IVs or feeding tubes).  Since Thursday, there have been flashes of both good and bad news on both of these fronts.

As to the oxygen, the news is unequivocally good.  The trend lines for her oxygen consumption are great.  She spent all day Thursday on the oxygen.  Friday, she was only able to keep her blood oxygen saturation up in the absence of the oxygen cannula for about half an hour.  By Saturday night, this had climbed up to an hour or two.  And sometime late Saturday night or early Sunday morning, she started tearing the cannula out on her own and living without it for hours at a time.  (The nurses generally let the baby sleep for ~2.5 hours at a stretch, and during that time notice that the cannula has come out if and only if the monitor shows her blood oxygen content falling.)  As of today, she's spending much more time without the oxygen than she is with it; even when she was feeding this morning she had no need of the cannula.  This, as I say, is pure unadulterated good news.

The feeding picture is a little murkier.  As I noted Thursday, the doctor wants her to take ~45mL of formula every three hours. Through most of last week, she was just way too sleepy to come close to this goal.  At feeding time, she'd be awak for about the first ten minutes and in that time would take about 15mL of formula.  You could then antagonize her just enough to keep her partially awake for a further 20 minutes and get her to take another 15 mL of formula.  After that she was out, and the remaining 15mL of formula needed to be pumped into her via the feeding tube. This kind of behavior was the rule all day Wednesday and Thursday.  On Friday afternoon, however, she suddenly perked up and took a full 45mL of fluid at three feedings in a row.  I was really pleased by this.  The NICU staff (both doctors and nurses) have been telling us constantly that there will be a day when her little lightbulb goes on and everything turns around abruptly.  With three consecutive successful feedings on Friday, I thought we had reached that day and that the end of the NICU ordeal was in sight.

I was incorrect.  Friday's burst of energy became Saturday's lethargic hangover, and we could hardly get her to eat anything.  By Saturday evening the staff decided not to even try bottle feeding her at most meals; rather, at two of three meals Saturday and Sunday they let her sleep and administered the entire 45mL of formula through the tube.  What's more, those feedings where we did attempt to bottle feed her were unsuccessful; we'd stepped all the way back in time to the feeding performance of last Wednesday. 

Then this morning things seemed to be looking up again.  As I mentioned, I'm back at work today. I stopped on the way in, though, to do the 8:00 feeding.  The nurse let me bottle feed Ainsleigh, and she did extremely well --- much better, even, than she'd done on Friday afternoon.  She took the first two thirds of the bottle in about seven minutes and the whole thing in about twenty.  What's more, she seemed more alert and stronger than I've seen her before.  Though the nurse told me that Ainsleigh'd "had a rough night" and that she had a bit of fever, I didn't get the impression that anyone was hugely worried about this.  As I left the hospital, I was feeling better than I did all weekend. 

I'm frankly not sure how my elevated mood has held up through the day.  So that I might get some work done (and, despite my general exhaustion and my heart being elsewhere, I have gotten some work done), Sarah went to the 11:00 and 2:00 feedings while I stayed in the office.  By phone, she informs me that the NICU staff seems much more worried about this fever business than I thought they were.  They've already done another chest X-ray to look for fluid on her lungs.  They've also drawn blood for another round of lab tests and started a new course of IV antibiotics.  What's more, so long as she's sickly they're back to feeding her through the tube.  We are, in other words, back to her condition as of Wednesday.

Despite all this, I'm hopeful that the current downturn is both slight and brief, and that come tomorrow or the next day she'll be back on track.  We'll see about that, of course, and I'll keep y'all updated on her progress.

The News As Of Thursday

For those of you in my email address book, the following post will be mostly recap.  It has been edited very slightly from the original message I sent out last Thursday, but there is no new information in it. What I'm doing here is preserving this text as a sort of baseline from which to go forward with updates on Miss Ainsleigh's medical condition.  There will be another post with new informaiton in it in just a few minutes.

Ainsleigh is almost three weeks early; she was due on the 24th and born on the 5th.  That's technically "full term" and wouldn't normally trigger an automatic, lengthy stay in the newborn intensive care unit (NICU).  However, little Ainsleigh just didn't want to wake up and make a fuss in the operating room.  After a few minutes of shallow breathing and no crying in the OR, the nurses decided to take her into NICU. 

The doctors there told us Monday night that the central problem was her breathing, which was too fast and too shallow. Monday afternoon and evening, this fast, shallow breathing wasn't even enough to properly oxygenate her blood.  In the Monday pictures, you'll see a sort of plastic dome over her head.  This is an oxygen tent; in order to make her breathing more productive, the doctors used this tent to create a little microenvironment with 50% oxygen content. 

Almost as soon as they put her in the tent, the doctors started slowly reducing the oxygen content.  At about 2AM Tuesday, they brought the oxygen content in the tent down to 21%, the same as atmospheric O2 content, and removed the tent.  Some time later they also decided that she was holding her body temperature well enough and moved her from the baby warmer to an ordinary crib. Note that the Tuesday morning pictures have her out of the tent and wrapped in a blanket.

Tuesday morning, however, the doctors were still concerned that she'd be unable to coordinate breathing and eating, so they were still feeding her through the IV tube.  Tuesday afternoon at 2PM they decided to try feeding her for the first time. She's got to take 45mL of formula every three hours to be released from NICU.  She's very sleepy, though, and it's hard to keep her awake and focused on eating for long enough to get that much formula in her.  This, and a continuing problem with her blood oxygen saturation falling while she eats, is the reason she's still confined to NICU.

The picture as of Thursday was mixed.  To get the necessary amount of formula in her, the doctors have put in a feeding tube so the food can be pumped directly into her stomach.  This has allowed them to take out the IV and should help her gain strength and weight.  After a brief time off of oxygen altogether, her mealtime breathing problems caused them to put her back on oxygen (this time through a cannula, one of those little things that goes in her nose) late Wednesday.  She gets the minimum amount of oxygen possible, but just can't quite seem to get off of it altogether.

Anyway, that's where were at on Thursday afternoon.  To get out of NICU and go home, she's got to get entirely off of the oxygen and begin drinking ~45mL of formula on her own, without the tube, every three hours.  We're not there yet, and we're not sure when we will be.  In the meantime, we're allowed to peek in on her whenever we want, and to hold her for half an hour at feeding times (ie, every three hours).  Sarah was discharged from the hospital Friday, but stayed on in a kind of hotel room across the hall from NICU for an extra couple of days.  We were hopeful that Ainsleigh and Sarah would come home, together, on Sunday or Monday. That didn't happen, of course, as I'll discuss in just a moment.

Hello, World!

I'm Ainsleigh Brynn. I was born, somewhat unexpectedly, at 1:34 PM MDT on Monday, 5 March 2007. I weigh 5 lb 14 oz and am about 18 inches tall. I currently live in the NICU, but my parents are hopeful that they'll get to take me home soon.