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.

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!

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.

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!

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.