Aurora Borealis

Indeed they got Cardinal Cadette on the surgical schedule for yesterday.  She came through surgery fine, and we made it home this morning a little after 9:00.  Mr. Tldz headed off to work just after we got home.  Agent Murphy spent the bulk of the day yesterday with one of our neighbors.

Cardinal Cadette actually kept the surgical dressing on this time until Dr. Lipsky saw her this morning.  (Not the eye shield, but at least the dressing.  He said he made it more compact this time.)  So now we do the eye drop regimen again, and she can see out of her left eye now — at least some, but she won’t be wearing her contact lens in that eye for at least a week until Dr. Lipsky checks it again.  He checked the prescription of her lenses while she was under anesthesia, and it sounds like the pair we get next month will be a bit stronger.

The eye looks more sore and tender this time than either did with the previous surgery — but the left eye did look more tender than the right after the initial surgery.  It makes me really hate putting those drops in.  But at least today she’s not fighting me as much as usual.

Hopefully there will be no more surgeries that require an overnight stay.  Ideally, there will be no more eye surgeries at all.  (From the way Dr. Lipsky talks, I’m not so sure of that.  He says he thought about our Cardinal all night.  I know he’s concerned about glaucoma.  It’s a standard risk of cataract surgery, but she seems to be at higher risk because of how small her eyes are.  So far no sign of it.)  But if we can go at least 8 weeks before we need another one, we should be able to do it as an honest to goodness day surgery — in and out.  We know surgery to remove her extra toes should be in and out in a day like Agent Murphy’s was.  We’ll have our initial consult with the orthopedic surgeon in late October, and she’ll be plenty old to not need overnight observation following anesthesia.

Poor little girl has had to go through so much already.  And she’s such a good baby.

Since I know I’ve been quiet of late, let me just hit a few highlights now, some of which I may expound upon later.

Tired is the basic state of existence right now.  And busy.  I’m calling our insurance company seemingly every day, so add frustrated to that.  Will be glad of the day when the mail doesn’t routinely contain a medical bill or statement of some sort.

Agent Murphy has had a veritable explosion in verbalizing, which is very good and lots of fun for us.  But he still has lots of work to do.

I have thus far managed to get Cardinal Cadette’s contact lenses in and out as needed.  Initially she had extended wear lenses so I was only dealing with them once a week, for which I was greatly relieved.  But that size wasn’t working for her and the size she needed to move to isn’t available in extended wear.  So as of Friday afternoon we’re dealing with them daily.  I guess at least we’ll get used to it more quickly this way.  Right now, we’re still at she cries, I cry…  Also on Friday afternoon we learned the Cardinal will have to have another surgery on her left eye — which means another overnight in the hospital for the two of us.  If her doctor has his druthers, the surgery will be this Thursday.  I guess if that doesn’t work, it’ll be next Thursday.  I have to talk to the surgical coordinator on Monday, and then we have to figure out what to do with Agent Murphy during the times I’m at the hospital and Mr. Tldz has to be at work.

Yesterday we had the complete baptismal rite for Cardinal Cadette, to round out the basic sacrament she received on July 4.  It was a nice afternoon visiting with a few friends.  Some were unable to join us due to other commitments, and some we never heard back from — including people who always respond one way or the other — so we’re hoping our e-mail invitations actually reached everyone we sent them to.  We are very glad Grandma and Aunt Katherine (the Cadette’s godmother) were able to be here from Chicago.

We made it through the left eye, too, and got home a little after 9:00 this morning.  Cardinal Cadette managed to get her dressing and eye shield off this time almost immediately after getting to our post-surgery observation room.  I told the nurses Dr. Lipsky wanted to be called if she got the dressing off, so they did and he ordered that she go ahead an begin the eye drop regimen.

We’d been doing pretty well with the drops at home.  My technique got better and it was going along pretty well.  Then Tuesday or Wednesday the Cadette decided she’d had enough, and now she’s really clenching her eye shut and fighting me a lot.  It’s really unfortunate, too, because the left eye looks more sore and tender to me after surgery than the right eye did.  Maybe it’s just that she got the dressing off so soon.  It also looks more goopy than the right eye did.  But Dr. Lipsky examined her this morning and said the eye looks good and just to watch it. If the discharge increases, we’re supposed to call him.  Otherwise, we’ll see him in the office in a week.  Her contacts may be in by then, too.  (He was ordering them as he was walking down the hall after surgery to come talk to me.)  Heaven help me, we’ll see if I can get the contacts in her eyes.  He’s commented on how small her eyes are, even relative to other babies.  I guess I’ll have to pick my poison: try to do contact lenses when she fights me even on drops, or try to keep heavy glasses on her when she won’t even keep the little eye shield on.

Dr. Lipsky said that in 20 years he hasn’t had an infant get the shield off so quickly.  And while he was examining her this morning he commented that it’s amazing how much control she has already of her arms and hands.  Makes it challenging for us!

Cardinal Cadette came through her first cataract surgery just fine on Thursday afternoon.   We were home a little after 9:00 on Friday morning.  (Because of her young age, we have to stay overnight so they can make sure she tolerated the anesthesia okay.)  Her doctor (who I really like) keeps saying, “She did great.”  Of course, he also keeps reminding me that this is just the beginning “of an 8-10 year mountain climb” of which this surgery is the easiest part.  Friday morning, when he did her post-op check, he volunteered to put in her first dose of drops for the day (she has to use four different drops) and showed me some tricks for getting them in, so my technique is definitely getting better now.

Next week we do it all again on the left eye.

Fortunately her doctor says “no harm, no foul” if she doesn’t keep her eye shield on — because it keeps coming off!

After being driven to Cardinal Cadette’s first appointment at the pediatrician yesterday (Sadly, we learned it was the last day there for the pediatrician we have seen the most.  Glad we got to see her one last time.  She’s being replaced by another woman, starting today, so I guess we may meet her next time.), as of today, I’m officially able to drive again.  So Cardinal Cadette and I loaded into the car and went to the drive-thru ATM and the McDonald’s drive-thru for a chocolate shake (for me, not her), then to Walmart for a couple of miscellaneous items.  (We love the stroller frame for the infant car seat.  Great find, Aunty N.!)  It all felt very exciting to me.  The Cadette slept through all of it.

So I consider that my “dry run.”  Cardinal Cadette has a pre-op appointment with the ophthalmologist first thing in the morning, and then we have to swing by Scottish Rite for an anesthesiology consult.  I didn’t want that to be my first time driving in two months, while also sleep deprived.

And, yes, that means I’m settling into a largely sleepless (okay, spurts here and there) routine with the Cadette.  And that’s with nearly full-time help this week.  We’ll see how I do next week with only part-time help.  And then after that I should be on my own with both kiddos.  Yikes!

The little girl had a busy day, probably overly busy.  Overnight last night they drew blood for chromosomal work because there’s supposed to be some new information related to retinitis pigmentosa and some syndromes where both RP and extra digits are present.  (She has an extra little finger on her right hand, and 6 toes on each foot.  Agent Murphy had one extra little toe on his left foot, so I guess she thought she had to outdo him.)  They’re drawing more blood tonight (and collecting urine) for some tests the ophthalmologist wants.  Even though he knows congenital cataracts run in the family, he wants to rule out any other possible causes. 

At 11:00 today we had a consult with an occupational therapist to demonstrate infant massage and some other stimulation we can give the Cardinal since she’s not getting  very much visual input.  At 12:00 we had our discharge lactation consult.  Cardinal Cadette nursed pretty well for 13 minutes or so, but according to the scale (she was weighed before and after for the first time) she didn’t get any milk.  Or she may have gotten some but burned as much energy getting it as what was in what she got.  She took her bottle okay, but more slowly than usual.  At 2:00 she had her hospital portraits done.  We got some really cute shots, though she slept through the whole thing so they’re all with her eyes closed.  At 3:00 she had a feeding assessment, where another OT did a bottle feeding to observe what she’s doing.  (Apparently she’s been doing some guzzling, especially during her overnight feedings, and then having her oxygen levels drop because she’s forgetting to breathe.)

She was so zonked out that it was hard to get her to take much of the bottle.  (She only took 20 ml of the 50-55 ml she’s supposed to take, and even that took a long time.)  The OTs had to keep trying to wake her up, and often when they’d do that her heart rate would drop.  It always came right back, but they don’t like to see drops like that.  Shortly before I was leaving, she was sleeping in her bed and her heart rate dropped again, pretty low.  It came right back again, but that ruled out the possibility of her coming home tomorrow.  She was supposed to take the angle tolerance test in her car seat this afternoon, but given her state, we decided we shouldn’t try that until tomorrow anyway.  They say she may still come home on Sunday, but that sounds less certain than it did a day ago.  They don’t seem to think these heart rate drops and drops in oxygen levels are anything too serious — just the Cadette’s showing us that she’s a bit immature, which she is.

We want her to come home, but we want her to be okay when she does.  So we’ll just wait a bit longer.

It’s good to be home!  I seem to be recovering well, hitting the milestones I’m supposed to, backing down on my pain medications, etc.  I keep reminding myself to take plenty of rest periods during the day between pumping sessions.   (Even though the little one isn’t home yet, I’m still up during the night to pump and keep my milk supply going and hopefully growing.)  Looking forward to being able to drive again come July 1 to regain some independence.  In the meantime, I’m still reliant on all the wonderful folks who have been helping us in order to get back and forth to the NICU to visit Cardinal Cadette.

Yesterday I went for her 3:00 feeding and stayed for a few hours.  I’ll do the same today.  Tomorrow I’m going to go in the morning and stay through the 3:00 feeding to see if I can really make it that long and still feel okay.

After I fed her yesterday, the nurse put her back in her bassinet and swaddled her. A couple minutes later the Cardinal kicked one foot out, then the other, and then completely opened up her swaddle and arms and legs were going everywhere for about 10 minutes.  It was as if she was doing a callisthenics routine, and then she went to sleep.  It was very cute.

Every time I’ve fed her she’s been able to take in more than what’s currently “required” in her orders.  I talked to her night nurse around 4:30 this morning while I was pumping and the nurse reported the Cadette had taken two bottles from her already and she was going to give her another one at her 6:00 feeding, which would put her at 6 bottle feedings for the day.  (She has to do all 8 feedings orally for 2 consecutive days before she’s eligible to come home.)  And her weight is heading in the right direction.  Initially her weight dropped, of course, then bounced right back to her birthweight and then fell again.  Now she’s on a slow, steady climb back toward her birthweight.  Her most recent weight was 5 pounds, 11.5 ounces.

The other day Cardinal Cadette had her hearing screening and she passed with flying colors.  The woman from audiology printed out the results for Cardinal’s chart and said, “I could put these in a textbook.”  Last night our pediatric ophthalmologist examined Cardinal Cadette.  Unfortunately, our little girl has cataracts in both eyes.  She’ll have surgery on one eye probably at 4 weeks of age and on the other the following week.  I should have more information from the doctor’s office by the end of the week to confirm the scheduling.  It makes us sad, but we knew our kids had a 50/50 chance of having congenital cataracts.  Agent Murphy didn’t have them, so we’ve gotten exactly 50/50.

I’m 33 weeks, 2 days today.  The OB reports everything looks good.  I’ll have another ultrasound with the perinatologist next week.  If we have a miracle and the placenta has entirely cleared the cervix, then I can proceed normally with this pregnancy to term; and perhaps I’d have a nice, natural delivery like I did with Agent Murphy.  But no one is really hopeful of that…

More likely the placenta will still be covering the cervix, fully or partially.  In that case, I will have an amniocetesis the morning of June 28 (to check the baby’s lung maturity) with C-section delivery scheduled for bright and early on Tuesday, June 29.  (Happy Birthday, Garbanzo Bean!)  After having had the anesthesiology consult during my hospital stay, doing some research, talking with Mr. Tldz, and some more with my doctor today, I’ve decided to have the C-section under general anesthesia. 

The epidural scares the bejeezus out of me, given potential neurological complications from its interacting with my CP.  I know there are risks with general anesthesia, and those risks are somewhat greater during pregnancy than during some other surgery; but those risks are well known and every anesthesiologist knows how to handle them.  On the other hand, no one can really assess the neurological risk for me or do anything about it if I have an issue.  All they can say is, “Oops – we’re sorry you can’t walk after surgery.  We hope you’ll be able to again soon.”  (And then there’s the fact that the anesthesiologist who spoke with me matter-of-factly said, “Well, you’re a good candidate for general anyway [aside from my fears about the epidural] since given your diagnosis you may well have a major blood loss in the OR.  You’ll be a lot more comfortable if you’re asleep for that.”)  So my doctor is fine with just going ahead with general anesthesia, even if we get to do this delivery on a scheduled basis rather than as an emergent situation.

We should be able to come home on Saturday, July 3 or Sunday, July 4.  What is still unknown in all of this is how Garbanzo Bean will fare, and whether baby will need to be admitted to the NICU or get to come home with us.

I saw the perinatologist today for an ultrasound.  The placenta may have shifted slightly, but, in the words of the sonographer, a “sliver” is still covering the cervix.  I’ll have another ultrasound with them in two weeks to check the position of the placenta, and if it hasn’t cleared the cervix (they don’t seem hopeful of that) we’ll proceed with a scheduled C-section. 

Everything looks good with the baby.  Garbanzo is measuring at 4 pounds 12 ounces and 3 days ahead of my original due date.  The sonographer noted that Garbanzo has long legs.  (Agent Murphy used to stretch out his legs and show off on his ultrasounds.)  Amniotic fluid level and blood flow through the umbilical cord are good.  As the doc put it, “Everything with the baby is beautiful.”

When I see my OB next week, I need to talk with him about whether I should get another round of steroids (2 shots on 2 successive days) for lung maturation.  I had a round May 4-5 when I was in the hospital.  The perinatologist doesn’t really think I need another round this soon, and apparently the steroids don’t do any good after 34 weeks, so the latest I could get them is next Thursday-Friday.  Part of me wonders why we wouldn’t just do another round since it isn’t effective after 34 weeks, but if the lungs don’t show up as mature after that, we can’t go back in time and do the steroids.  Anyway, we’ll see what my doc says.

Then, during the 36th week, I’ll see the perinatologist for an amniocentesis the day before my OB wants to do the C-section.  This tests the baby’s lung maturity.  Apparently they really try to do the procedures just a day apart.  I asked why, as opposed to doing the delivery 2 or 3 days later.  The perinatologist told me it’s a legal thing, because if they have evidence of lung maturity, don’t deliver the baby right away, and then something happens, they’ll be held accountable — “Why didn’t you just deliver the baby?”  Gee, we don’t have any problem with medicine being driven by fear of litigation, do we?  Good grief.

In other news, we were glad to learn that Google wants to proceed with Mr. Tldz as a candidate.  Unfortunately, the earliest they could schedule him for an in-depth technical phone interview is the 14th.  Meanwhile, other applications just grind along.  No news on any yet.  As best as we could learn from MARTA (our state representative was able to rouse a pretty quick response from them) the position we’re expecting to hear back on this week will still be accessible under the current service modification proposal.

Mr. Tldz feels like his interview today went pretty well.  They say they’ll have interviewed all the candidates by Tuesday or Wednesday next week, so he should hear something after that.  Meanwhile, he has applied/is applying for 4 other positions.  Five positions in the first week of a job search — not bad.  So we’ll hope something good comes of one of these or another that’s right around the corner.

Got my appointment with the perinatologist set for next week.  That makes 3 doctor appointments in June for which I’ll need rides.

Our freezer arrived Monday night, so we’re starting to use that.  And I’ve lined up a babysitter for the 2 days in June that A. is out of town.