Aurora Borealis

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.

We are overjoyed to welcome Mrs. Tldz home as of yesterday. A most wonderful Father’s Day present. Both the Dog and the Agent showed their approval.

This afternoon, I accepted an offer of employment for a new opportunity to begin June 28. I am relieved and excited to begin the new assignment. I got a call later in the afternoon from one of my new co-workers, asking about what I would need to have set up in terms of software. I gave him the list and explained the various options and how to choose among them.

In other news, the Cadette and Mrs. Tldz are both doing well. The cadette continues to learn valueable life skills in the NICU and we are very proud of her progress. Mrs. Tldz, for her part is making great strides in recovering from her operations. Her spirits seemed quite good as I left her to come home this evening. The Agent stopped in for a visit with Auntie N. just before his speech therapy appointment. N tells us he did quite well and is still saying some of the new words he practiced in the therapy appointment. He was pretty clearly missing mommy and daddy today.

Mrs. Tldz gave birth today by c-section to our baby girl Cardinal Cadette. We went back and forth on whether she is Cadette Cardinal or Cardinal Cadette. But we are sure about the rank of cadette and the fittingness of the cardinal. The cardinal is the state bird of my home state and cardinals of the Catholic church wear red robes. Our cardinal came to us through blood, so things that are red seem rather appropriate.

To all of you who have prayed and helped us out through this adventure, we offer our most humble thanks. We could not have done it without you.

In other news, I have a follow up phone interview tomorrow. This interview is with the hiring manager, who is on vacation in India. Apparently I passed muster with the technical team. That’s good news. I’ve still got lots of other leads going, including a phone interview that I had this morning that went well enough that they want me to come in for an in person interview.

We appreciate your prayers on my behalf as I look for a new opportunity. I’m also very thankful to those of you who have given me rides to job interviews and those of you who have watched the Agent for me while I did various job hunting things.

At about four o’clock this morning, Mrs. Tldz woke up and reported that she was bleeding. As per standing instructions from the ob, we called 911 and she has been taken to the hospital. I am here at the house to watch Agent Murphy and to catch up on some chores we had not quite gotten to in preparation for Garbanzo’s arrival.

At this time, I do not know if Mrs. Tldz will be delivered of a child or kept at the hospital for monitoring until our scheduled date of 6/29. In either case, I do know that she will not come home until there is a child born.

All, please pray for her health and the health of Garbanzo Bean.