Updates

I’ve got a couple new Rowan posts up over at rhiyaya.com. From now on I will probably do my Rowan blogging over there, but I’ll try to update here occasionally with what’s going on.

It’s (sort of) My Party and I’ll Cry if I want To – Planning this first birthday party is going to be really, really hard.

Inconsolable Irony of Breathing – Another respiratory illness, more nebulizer.

8 Preemie Essentials – A few things that helped us get through those long weeks

And some original content over on Preemie Babies 101.

To Belong as a Preemie Parent

Rowan is doing great. 17 pounds of awesome.

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The 1%

Birth = 3 pounds 3oz

Lowest weight = 2 pounds 15oz

Current weight (9 months actual, 7 months adjusted) = 16 pounds 4oz

Today, for the first time ever, Rowan has a dot on the standard growth chart.  For his actual age.

He is:

• Officially in the first percentile for both weight and length for a nine month old baby.  Hold on.  I think I have something in my eye.
• Low on iron.  Win some.  Lose some.
• Sitting unassisted easily now, and is lunging forwards to grab at toys. He can roll both directions, but so far has not realized that this makes him capable of locomotion.
• A fiend when it comes to eating.  After a rough start with carrots he devours steamed broccoli, avocado, purees, mashed potatoes, and so much more. He basically shoves fistfuls of food into his mouth, and lunges for the spoon.  He does have something against applesauce
• The happiest baby on the block.  Most of the time. He cackles when I speak Parsletongue.

Our pediatrician is not the same one we used when Lorelei was this age, and though I like her just fine, we tend to come at problems a bit differently. I am not a particularly quiet or shy person, but I suck at sticking up for myself or my kids with health care professionals. With that in mind, if anyone has any great iron-rich recipes for a 9 month old, let me know.  I personally would rather avoid lots of baby cereal, because he needs healthier calories. He can do some finger foods, and also doesn’t mind purees.  He thinks multivitamins are torture and poison – they do taste like bloody pennies, after all.

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What’s new?

I made a Facebook page!

And I made a page with a list of some of my favorite essays from across my blogs.

 

this hit home with a baseball bat

Just came across this essay, and man did it hit home.

7 things I felt guilty about as a preemie mom

RSV boy – capable of coughing a lot in a single bound

Duke discharged us around 4:30 on Tuesday. They left it up to us and said we could stay another night, but their preference was to get him away from all the other hospital germs. I hadn’t slept in two days so I decided discharge was better. I quizzed the doctor and nurse on every single detail I could think of, so that I would know if he needed to go back. They absolutely did not want to give me a nebulizer. They insisted it wasn’t helping. The doctor actually stopped the resp therapist from giving him another treatment because albuterol doesn’t help bronchiolitis. I was fairly sure it was helping, but what did I know?

I scheduled a ped appt for the next day. We made it through the night with him on me in the recliner. I saw a doctor I hadn’t seen before and liked him. He said “you are not leaving here without a rx for a nebulizer.”  His point was that it may not change the duration or overall severity, but if it made him more comfortable then it was worth it. I wanted to hug him. He also said that rowan had developed an ear infection in the last day. And RSV was confirmed. It’s a tough time to be Rowan. The doctor did say he was likely at or past the peak. It’s just that it’s a really long peak.

He is still pretty sick today, but the nebulizer is absolutely helping. He isn’t a fan of it, though. Earlier he spent 20 minutes having coughing fits every couple of minutes (see video below) to the point that I was getting nervous. Steamy bathroom helped some, but not enough. I gave him a nebulizer treatment and he relaxed and fell asleep. Now he is awake and calm and trying to steal the tissues from my nose.

Why do I have tissues in my nose?  Because he has spent the last four days coughing in my face, so now I have it. Luckily RSV is generally just a regular cold in older kids and adults. But that’s so not what I want to deal with. I went ahead and took tomorrow off work. I only had six hours of sick time, and have only worked seven hours this week. The math is not pretty.

And I think he just poopsoded on me. Poor dude. Poor me.

  

I’d like to give up my lasso. Thanks.

Phone charger.  Computer.  Computer charger.  Water bottle.

Not my first rodeo.

I don’t think I like rodeos.

Watching Rowan struggle to breathe I knew I should prepare myself.  I did not want to get sent to the hospital with a phone battery at 15% again.

Knowledge that I wish I didn’t have. That was a pretty big theme of the last few days. I could hear the monitor alarms in other rooms, and occasionally in Rowan’s. Oh, a lead must have fallen off down the hall.  Now someone is alarming, I wonder if they had a desat, or brady or tachy, or or or.  Now someone is either in serious trouble, or their monitor has gone wonky.  Probably wonky.  The “shampoo and body wash” dispenser in the bathroom has hand soap again.  Still smells the same.

When the doctor sent us to Duke, I wondered how I was going to react. I was fairly numb to the idea, because watching Rowan work so hard for air overwrote every other anxiety. I’ve read plenty of accounts of the flashbacks and fear of ending up back in the hospital.  For me it was how natural it felt that felt unnatural.  The o2 monitor fell off of Rowan’s toe, so it alarmed.  I casually walked over and silenced it.  I was no stranger in a strange land.  I was an acquaintance in a strange land, at minimum.

It was less anxiety, and more discomfort.  It is disconcerting to feel at home in the hospital.  To get off the elevator and think, “oh, they changed the art on the windows.  No more TARDIS drawing.”  To look at the same fish in the fifth floor lobby.  I knew how to order food, what tasted good, and what the tray would look like when it arrived.  There were parts of this that made things less difficult, at least I wasn’t learning the layout of the land at the same time as I was worrying about Rowan.  It was just unsettling, and the anxiety was this constant low-level buzz way deep down, rather than the more panicky feeling in my throat and behind my eyes.

Rowan’s birth and NICU stay still feel a lot like something that happened to somebody else.  I recall the facts, I recall the facts of how I felt.  But I still feel fairly disconnected from it.  This hospital stay felt like there was static in the line.  It was trying to make connections, yelling “CAN YOU HEAR ME NOW?!” while my brain huddled in a corner going, “LALALALALALA” with its hands over its ears.

I wondered if the doctors noticed that I wasn’t crying. I mean, a lot of the time I was cracking jokes in a clear “if you don’t laugh you’ll cry” sort of way.  Except that I seem to have lost my ability to cry. I think I left it somewhere at Duke nine months ago, and there doesn’t seem to be a lost and found box for that.  I kept thinking, “I should be crying right now” and could manage a few tears welling up in my eyes, but then unintentionally composed myself.  I’m sure the tears will show up in the middle of an important meeting, or at a fancy restaurant, or somewhere equally as inopportune.

For now they must be the static in the line.

What a difference nine months makes.

 

Home!

Finally home!  Rowan was discharged with the plan to see his pcp tomorrow afternoon. I quizzed the doctor on exactly what would be reason enough to bring him back in.

Being there for 15 hours between the two visits gave me an idea of what makes them concerned. The Dr said it might get worse tonight, because days three and four tend to be the worst. But his O2 stayed good for the most part, and he is able to calm and rest peacefully between episodes, so she was comfortable sending is home.

Bronchiolitis

So we are at Duke. It’ll all be fine, but Rowan has Brochiolitis. He got sick over the last two days with what we thought was a cold. It was probably RSV (haven’t heard those results yet), and led to Bronchiolitis. I picked him up from daycare yesterday with a 101.5 temp. Once we were settled at home and I went to change his diaper I realized he was retracting over his ribs and flaring his nostrils. Well, to be more specific I took a video and sent it to people who would know. They said take him in immediately.  It was about 3:30 by this point and I made a pediatrician appt for 5pm. Friends said that was too long to wait. So I ended up going to the doctor’s office at 4:25 figuring I’d rather hang out there.

One thing I have learned over the years is that no matter the tone of voice, you can tell a lot by the speed by which you are seen. They took Rowan back immediately, and the doctor came in and saw him before her other patients. His O2 sat level was 91%.  She said we would probably go to Duke via ambulance, but would try a breathing treatment first. We did xopenex in a nebulizer and gave ibuprofen and checked him again. O2 was back up to 95. He was still retracting and breathing fast, so she sent us to Duke, but said we could drive.

When we got to Duke they got him back ahead of everyone else. By this point he was looking quite a bit better and his lungs sounded good. Still slight retractions but way better. So after a couple of hours they discharged us.  I asked about a nebulizer for home and they said it wasn’t necessary. If things got worse to bring him back, otherwise follow up with his pcp in 24-48 hours.

We got home around 9pm. Zach took him until 11, so I got about an hour and a half of sleep. Then I got in the recliner with him. Soon he was absolutely burning up, and of course we could not find a single thermometer. We gave him some ibuprofen and he managed to get into a fitful sleep. We both dozed and woke dozed and woke until around 2am when he was moaning in his sleep. Then he was  inconsolable in his half sleep and was retracting again. Also he was breathing very fast.  I wavered for a little while but ultimately decided I head back to Duke.

He sounded terrible in triage. The CNA noticed his nail beds were a little dusky, and he was really wheezy and uncomfortable. His O2 was good, though.

 

Since then we have been playing the should I stay or should I go game. They finally decided to admit him, warning (if that’s the right word)  me that they probably wouldn’t keep him much past 8am. They did another nebulizer treatment and he sounds so much better. They didn’t round on him until about 10:00, and have decided to keep him for a few more hours because they would rather us stay a little while than go home and have to come back.

So that’s where we are. I am sure I will write a long-winded post tomorrow about the whole hospital experience in the wake of the previous experiences. But for now I’m working on just a couple hours of sleep in the last 30 hours, so my make words ability things are not working.


  

Update

Because I’m me, I was convinced the Scary Mommy post would be the least visited post in the history of their site.  But it seems like quite a few people could relate to it, and I was a bit blown away (and maybe slightly overwhelmed and freaked out) by all the likes, comments, and shares.

I thought I’d give a brief update on Rowan and myself.

In short, he is fantastic.  He is eight months old, six months adjusted – definitely closer to the six month end of things developmentally, but that’s fine.

It took three months to hit true breastfeeding success, but we did it.  A lip and tongue tie revision made a tremendous difference.  But I couldn’t have done it without the help of the amazing lactation consultants at Women’s Birth and Wellness Center.  We’ve added in solids in the last few days, and he has tried carrots, avocado, cucumber, and sweet red pepper.  I’m starting with baby led weaning rather than purees.

He weighs 15 pounds, and while his weight and height are still below the charts for his actual age, his head circumference is 21st percentile!

He sprouted his first two teeth on December 30th.  Five years *to the day* from his sister’s first teeth.  Weird.

He is working on sitting unassisted.  Really, he can do it, he’s just prone to throwing himself sideways for fun.

He rolls from front to back like a boss, but still struggles with back to front.

He “graduated” from physical therapy, with a caution to watch for directional preference when he turns his head.  The Special Infant Care Clinic said he was doing so well that they didn’t need to see him back until he is one year adjusted, at which point they’ll do their whole battery of developmental screenings.  His eye exam was clear, too.

He is so happy.  Except when he’s not.  He grins constantly.  We had a stomach virus run through our house a couple of weeks ago and he would grin, projectile vomit, and grin again.  If he could have smiled *while* puking, I think he would have.

He still sleeps like shit.  Actually, that’s not true.  He sleeps fine as long as my nipple is in his mouth.  Maybe I’m the one with the problem.

And me?  Still muddling along.  The whole experience still seems like something I watched from afar.  No more panic attacks, and nightmares are few and far between.  In some ways I’ve become uncomfortably numb to it, maybe a little disconnected from it.  Things that used to make me cry just… don’t anymore.

I’m exhausted – but more than that, weary.  One thing nobody mentions about having a preemie is that you are stuck in the longest newborn stage ever.  You’ve already been a parent to this child for however many weeks or months before you even get to the point where he should be born.  Things take longer.  There are more appointments.  More worry.  Time feels distorted.

But here we are.  All of your experiences remind me how lucky we really were.  So many of you had babies at the micropreemie stage, and a few of you didn’t get to bring them home.  And that hurts me for you, and reminds me that while Rowan’s start may have been the hardest time of my life, there is really so much to be grateful for.

It still sucked, though.