Aurora Borealis

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.

This afternoon our pastor baptized Cardinal Cadette, with just Mr. Tldz, Agent Murphy, and me in attendance.  (He squeezed us into his schedule before leaving town tomorrow.) We will still have the formal, complete rite on August 21st as originally scheduled, so we can have godparents, family and friends there.  But we wanted her to have the sacrament since she’ll be undergoing cataract surgery with general anesthesia both this week and next week.  Like her brother at his baptism, she slept through the whole thing.  Monsignor even commented that it’s unusual to have a baby behave that well.

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 Cardinal did fine with her overnight feedings last night, so she was cleared to come home today.  Mr. Tldz and I went in to the hospital around 11:30 this morning, in time to get her ready for her noon feeding.  We got our discharge information, she got all those ridiculous wires and monitors removed, we got her dressed in her coming home duck outfit, packed up all our stuff, and headed home.  We arrived around 1:30.  Agent Murphy was napping, so we were able to get the Cadette a little settled.  She spent some time in her bassinet and her swing, then had a bottle from Daddy on the couch, during which Agent Murphy gave her two kisses and The Dog sniffed her head.  Then she spent some time in her pack n play bassinet in the dining room, before returning to her bassinet in Mommy and Daddy’s room.  Soon it’ll be time to get her up for her next meal.

Our future for the next few weeks will be feedings and sleeping in snatches where possible, punctuated by a series of doctor’s appointments.  But it’s good to have our little girl home!

Yesterday about an hour before Mr. Tldz and I were going to head out to visit Cardinal Cadette, the nurse practitioner called and said they wanted me to come in and spend the night to do the Cadette’s nighttime feedings.  Since she’s been giving the night nurses trouble with desats (drops in oxygen level) and drops in heart rate but doesn’t do that when I’m feeding her, they wanted to see what would happen if I feed her at night in order to prepare her to go home.  So I packed some items and we headed off.  Mr. Tldz stayed the couple of hours we’d originally planned, then came home to take care of Agent Murphy.

We arrived for Cardinal Cadette’s 3:00 p.m. feeding, which included a consult with a feeding specialist.  It was with the woman I really liked from the day before.  She observed both me and Mr. Tldz feeding the Cardinal and said we both did beautifully and our little girl didn’t have any problems during that feeding.  Cardinal Cadette and I moved to the nesting room starting with her 9:00 p.m. feeding.  When the nurse practitioner called she hadn’t explained any of this, so I’d thought I’d be camped out in the recliner in the Cadette’s pod.  But it turns out they have a private room/bath for these “nesting” sessions.  It’s still in the NICU and the little one was still on monitors with the nurses, but we were somewhat removed and on our own — a lot more like what it will be like when she comes home.  I fed her in the nesting room at 9:00 p.m., 12:00 a.m., 3:o0 a.m., and 6:00 a.m.  I had to pace her a few times when she got to guzzling, but mostly she paced herself.  And she didn’t have any desats or drops in heart rate during these feedings.  Maybe Mommy’s familiar heart rate, breathing, scent, and all that help her to regulate herself.

Although she did so well, because she had such a hard time Friday night/Saturday morning, they want to watch her for another day.  We’re hoping she’ll be able to come home tomorrow afternoon.  Oh, and I should mention that her cord stump fell off yesterday.  Hooray!

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.

Cardinal Cadette had a number of visitors today.  First, Mommy and Daddy came in the morning, along with one of Daddy’s former co-workers who gave us a ride.  And then we received the following reports on later visits today:

Uncle R. visited just after lunch:

I met Cardinal Cadette this afternoon just after lunch.  She was stretching and yawning and putting her fingers in her mouth and making all kinds of Cardinal Cadette noises.  She sometimes looks as though she’s looking right at you.  She definitely responds to voices.  She’s looking red and healthy, I thought, and the nurse told me she can probably come home before much longer.  You all are mighty blessed, as you know.  Tell Agent Murphy he might start planning his strategy for telling her please leave him alone, NOW.

Saw Cardinal Cadette a bit ago.  She’s looking really good.  She was waving those little arms about quite a bit and doing lots of stretching, she even “talked” a little.  I saw there was a chance for her to be home Sunday…I’ll keep my fingers crossed.

Our little girl is coming along.  Her weight last night or early this morning was an even 6 pounds.  Her night nurse said she’d done really well on her bottles and had taken her feeding tube out herself, and they’re not going to put it back preemptively.  They’ll see if she can go without it.  Hooray!

I spent the better part of the day with her yesterday.  Her nurse was saying she might be ready to come home as early as Sunday.  Yikes — we still have a few things to get ready, and since I’m not driving yet, we’ll have to find someone to transport us.

I was pretty worn out after the long day, so today we just went in for her 9:00 a.m. feeding.  Going in the morning allowed Daddy to come too, since Agent Murphy has a babysitter in the mornings.  It’s the first time Daddy has seen her since Saturday, so that was very good.  And, in very exciting news, she had a great nursing session.  She’s done pretty well a couple of times before — typically she’s tried harder at it than her full-term brother ever did — but this is the first time she’s done really well without a lactation consultant present.  She nursed pretty strongly for 12-13 minutes and she must have been getting milk because she didn’t get fussy or root around.  Then she took most of her bottle (also breastmilk) from Daddy.

We have a lactation discharge consult scheduled for tomorrow at noon, which they say will suffice as long as she goes home by Monday.  I’m trying another “whole day” tomorrow, because we’re also having a PT/OT consult about ways to give her extra tactile/auditory/vestibular input since the cataracts are preventing her from getting as much visual stimulation as she otherwise would.

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.

Yesterday was a red letter day at our house.  Miss A. got the Agent ready to go to the playground.  Then the handyman showed up.  (We had a list of miscellaneous things that needed attention — doors that were sticking, doors that weren’t latching, a doorbell that worked only intermittently, etc.)  Agent Murphy was fascinated and decided he’d rather watch Mr. Chip work than go to the playground.  (They went today instead.)  As if that wasn’t enough, then the lawn guys showed up, so the Agent had to run from window to window to watch them work.  Agent Murphy and Miss A. took some mail out to the mailbox and saw that people up the street were having some tree limbs trimmed, so they watched that for a while.  And the garbage truck came yesterday, too.

This afternoon it started raining and Agent Murphy pointed excitedly out the window.  Then he ran off to his room and came back with one of his issues of High Five! magazine that we’ve been reading a lot lately.  He had it open to the poem called “Rain Party” about a bunch of frogs playing in the rain.  He pointed to the poem and then out the window again.  I’m continually amazed at how the little guy’s mind works and how smart he is.  There’s so much going on in his head.  It’ll be so much better for him (and us) when he can make this talking thing work.