Open Mother’s Day Letter to My Wife

Dear Shannon:

Seven years ago, if you told me that I’d be a husband and father living in Texas, I’d have laughed my a$$ off and asked where I could get the same drugs you were taking.

And here I am, an hour or so into Mother’s Day 2010…trying to put into words how awesome the mother of my children is.

Shannon, you’re my world. And the two amazing gifts you’ve given me — our beautiful daughters — will never be matched.

Even before they were born, you were an incredible and caring mother. During your pregnancy, you cut out caffeine, alcohol, and anything else that could be remotely bad for the babies. You did everything possible to give them a good home, like a good mom does.

And when they came early with all their health issues, you kept it together as we bounced from NICU to NICU every night for three weeks. You went into full-on Mommy Mode, soaking in every word the NICU nurses said and committing it all to memory. So when we brought the girls home, you were on top of everything.

In the 12.5 months since then, you have become SuperMom. Back surgeries don’t slow you down. Full workweeks ain’t nothin’.

I got lucky to find you, because you’re the perfect wife/partner/best friend. And I got even luckier when you turned out to be the perfect mom.

Happy Mother’s Day!

Love,

Harley

Norah’s Big Day

Normally, I strive to give my girls equal time. But today was especially big for Norah, and here’s why.

Norah's "diploma"

After about eight weeks, Norah no longer needs her “Doc-Band.” That’s one of those hockey-helmet-looking things that you sometimes see infants/toddlers wearing.

Basically, it’s a corrective device used to round out a child’s head as it develops. Norah’s head was a bit “off” after being in the same position for so long during her NICU stay, and because she was on her back for long periods of time.

But after a couple months of 23-hour wear, her stinky helmet is no more. (Can’t wash it, just wipe it down with rubbing alcohol each night.) Her head isn’t “Charlie Brown round,” but it’s looking great.

Will post new pics of the girls soon, so you can see both of our little angels.

 

Daddy Diary: UltraMegaSuper Update May 10, 2009

They’re home! (The two sweetest words in language right now.)

Alexandra came home with us on Friday afternoon, and we picked up Norah on Saturday morning. Having both girls at home – and in the same crib (we’re seeing how that goes – so far quite well) is just incredible.

A few thoughts on things:

FEEDING = It’s crazy. Trying to get them to take a bottle, then when they finally do – look out! They chug like there’s no tomorrow. It’s scary, actually. And then they get out of breath from all the exertion of eating, then fall asleep. Then you try to pull the bottle out slowly, and their reflexes kick in. “Where you takin’ my bottle, son?” And they start chugging again like mad.

BURPING = I have two methods, both of which are “epic fail” at times, super-awesome at others. The “hold them by under the chin but don’t choke them and pat on the back” method that the nurse practitioners showed us is my weapon of choice…but the old standby of “over the shoulder” is pretty good as well.

SLEEPING = I am in a generally paranoid, freaked-out-of-my-mind-at-any-sound kind of state when they sleep. I worry that they’ll stop breathing. I worry that they’ll gag on their spitup. I worry that one will accidentally poke the other in the eye, spawning a rivalry that will last for decades.

But so far, things are great. They sleep anywhere from 2 to 4 hours at a stretch, sometimes 4.5 if they’re feeling generous (or extra-content).

DIAPERS = I never thought I would pray for somebody else to poop. That day has come. Apparently, bottle-fed babies can poop up to 3-4 times a day…or as infrequently as once every 2-3 days. And when it comes…hoo boy. I’ve been wondering if I can get some of that stuff the FBI used in Silence of the Lambs, that Clarice & Co. put under their noses to block out the stench. But you know what? It’s all good when it’s your kid, and you’re just happy they’re alive and poopin’.

Daddy Diary: MegaBigUpdate May 1-5, 2009

My bloggery is suffering as my daddery and workery are more all-consuming. Sorry, folks.

9AM Updates:
Norah = doing well; continuous feeds; looks great.
Alexandra = up to 4 lbs. 8 oz.; “nippling” (I love that word – it means drinking from the bottle) pretty regularly; no spitup overnight

Work update: Tough day. A couple layoffs thanks to declining revenues. But big light at the end of the tunnel, according to bosses. In 10 days, I’ll have a person reporting to me for the first time. Psyched about that, at least.

Texan Driving Tip #43: Never ever EVER take Main Street/423 through The Colony and Little Elm during rush hour, in either direction.

Alex visit update: I got to feed her! Yet another of the most incredible experiences ever.

Went to a new IHOP near us tonight for a late dinner. Clearly just opened – boiling hot in the main room, nice and cool in the back room where they seated us. Our server never showed up, so a very sweaty and nervous (but courteous) server whose section we were not sitting in took care of us.

12:25 AM (Phone) updates:
Norah = doing well, sleeping; went right back to sleep after diaper/temperature check. After all she’s been through, lots of sleep is perfect.
Alexandra = doing fine; had her full 40ml bottle at 11PM with no spitups.

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Saturday, 5/2

9:17 AM Updates:
Norah = sleeping; doing well, having PIC line removed today – no more IV fluids! Down a bit weight-wise, 4 lbs., 6.1 oz., but likes continuous feeding; and we can hold her next time!
Alexandra = really good; nippled at 8AM. took 30/40; sticking out her tongue a lot; awake, just lies there looking around peacefully

3PM Updates:
Norah = no more lines! no more pulse oxygen monitor!
Alexandra = doing fine; little spitups; nippled at 2AM

4PM Norah visit = I got to hold her for the first time (although with gown and gloves, since I had a MRSA infection like seven years ago). Shannon changed her wet diaper.

5PM Alex visit = all is well.

Dinner at Palio’s Pizza Cafe near the hospital – good. POURING rain outside.

8PM Alex visit = I did her feeding, she took 47/50 ml. Awesome.

Midnight updates:
Norah = doing well; changed her diaper; sleeping peacefully.
Alexandra = sound asleep.

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Sunday, 5/3

11AM Alexandra phone update = finished whole bottle at 8AM; starting vitamins; more interested and vigorous

12PM Norah visit = got to hold her again; she took 20ml, and is now nippling every 12 hours

1PM Alex visit = fed her; up to 4 lbs. 9 oz.; changed her diaper!; mid-feed, another poop!; hiccups started after feeding, possibly the cutest sound ever

8:00 PM Alex visit = I fed her; she burped and had a medium spitup; need to get her to 8 bottles a day for two straight days before she comes home; at 3 now, maybe 4 tomorrow

8:45 PM Norah update = doing great, sleeping like an angel

11:48 PM Norah update = doing well; 15-20 minute bottle feeds.

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Monday, 5/4

Had to work today, all updates were solid and uneventful.
Visited Alex for her 8PM feeding, but not Norah – since she’s sleeping most of the day except for her two bottle feeds (noon and midnight). Felt incredibly guilty.

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Tuesday, 5/5

All was well for the morning updates.

3:50 PM Updates:
Norah = up to 3 or 4 bottles “if she wants”; stopped continuous feeding for a couple hours before bottle feeds; very good day!
Alexandra = doing good; took entire bottles at 11AM and 2PM; up to 4 or 5 a day, no spitups!

Evening visit updates:
Alexandra = did her feeding, but she was fussy; changed her diaper, then re-started feeding; stopped again, thought she pooped again, went to check; AMAZING poop – all over the entire diaper area; changed, then finished most of the bottle; rest of the visit, she was nice, quiet, checking us out.
Norah = she was awake when we got there! watched some of her feeding (not bottle, this feeding) and Shannon held her for a while.

Can’t figure out who they look like, it changes from day to day. This person’s eyes, this person’s nose, etc. From now on, I just want to let them look and act like themselves and not compare them to other people.

Daddy Diary: April 30, 2009

Up for work, and on the way there, I got the:
9AM UPDATES:
Norah = doing fine, still spitting up often; one of our favorite doctors was in, and they wanted to try continuous feeding (I did that, and gained 30 lbs.). Had a good night last night, though.
Alexandra = doing great, took 25 ounces at the 8AM feeding through the bottle; trying to increase to 40ml per “meal”

Work was busy, new cubicles put in on the other side of our office. Ours are on the way.

Left work at 6, grabbed a very healthy Wendy’s grilled chicken sandwich for dinner on the road. Met Shannon at Norah’s NICU, so here’s the:
7PM Norah Update = Completely zonked out sleeping, so we didn’t bother her. Hung around for a bit, then headed to:
8PM Alexandra Update = She was being fed via tube, so no bottle try tonight. I held her for much of the feeding, and after it was done, she started to cry a bit. Somehow, my paternal instincts knew that she had a dirty diaper – and lo and behold, when we opened it up, POOP! We changed her, and that calmed her down a bit.

Until, that is, when she spit up a little. As I held her up so Shannon could wipe her little mouth, she let loose with projectile vomit that would make an Arizona State sophomore proud.

We got no help cleaning her up, as most of the nursing staff was caring for a new NICU baby that needed a ventilator. Seeing that bothered us, since we knew what that felt like.

After cleaning her off and dressing her in a fresh outfit, I sang a medley to her: The Alphabet Song, Twinkle Twinkle Little Star, Where The Streets Have No Name, The Luckiest, Yesterday, Sesame Street, Cheers and a couple others. (I do take requests, but she just laid there and stared up at me with those gorgeous eyes.)

One more workday, then weekend hours where we can visit more. YAY!

[COMMERCIAL SIDEBAR: Somebody must buy me Giant Cheetos. Quickly.]

Daddy Diary: April 29, 2009

–Slept a little late – working from home today. Called to check in on the girls…

9AM UPDATES:
–Norah = Chris at the front desk complimented her name; doing fine, had a good night; weight at 4 lbs., 7 ounces; trying to wean off Fentanyl, but it’s slow going
–Alexandra = drank 20 out of 38 (ounces, ccs, milliliters?) of her 8AM bottle; had a really good night, gained a little weight up to 4 lbs., 5.1 oz.; no new orders

Did work all morning, then left for Remicade treatment just before 1PM. Got lost – 121 changed off-ramps due to construction. It’s always tough to type/work with one hand (the other with an IV), but I manage.

2PM UPDATES:
Norah = good day, but spitting up after each feeding.
Alexandra = a couple “spitties” also, but doing really well

Drove home, fought insanely bad traffic on Main Street/423. [DRIVING TIP: When going through The Colony or Little Elm, AVOID MAIN STREET/423 coming north from 121 AT ALL COSTS.]

Shannon made dinner (thanks babe, it was great!) and we headed to see the girls.

6PM NORAH VISIT: Spit up a little bit when she sneezed in mid-feeding (via nose tube); otherwise gorgeous. Shannon got to change her diaper.
8PM ALEXANDRA VISIT: I got to change her diaper – and it was poopy! Shannon then bottle-fed her, and she did OK, but then switched to tube feeding. I got to hold her for a while too. She smelled like popcorn – Shannon reminded me that that was the formula.

Drove home, and here we are. A couple more crazy busy days ahead – going into the office, NICU visits, still trying to unpack a box or two after the move.

[COMPLIMENT SIDEBAR: Big ups to every single healthcare professional working at both of our NICUs: Baylor Frisco and Texas Health Plano. The doctors, nurses and everybody else have been amazing, caring, patient and just plain wonderful. They are miracle workers.]

Seacrest out.

Daddy Diary: April 28, 2009

Back to work today. Weird leaving from a new house, but ended up arriving just about my usual time. Called for updates on the girls when I hit the highway – both doing well.

Norah’s being weaned off her pain meds, as well as her IV fluids – as they switch her to actual feedings. Alexandra was also good and stable – up to 2 bottle feedings a day.

First it’s breathe. Then eat. Then home. Hopefully, in 4-14 days.

After a full day of work (and the usual ridiculous client crises), I drove home to get Shannon. We headed to see Alexandra for her 8PM feeding, which Shannon did all by herself. There’s nothing like seeing your wife feed your child.

[JOKEY SIDEBAR: A few days back, the nurses told us that Alexandra was being feisty when they tried to feed her. The next day, they said she didn’t like her sponge bath much either. I mused that maybe she’ll be a supermodel.]

After Alexandra’s feeding, we went over to see Norah. She cried a few times, but never for that long and not at all loud. It’s just great to hear her making noise after seeing her so still (except for the ventilator puffing her chest) for what seemed like an eternity.

Picked up Shannon’s beloved cats from our old place to get them into our new garage. Please do not engage me on this subject. (Ha.)

Up for tomorrow (on the personal front): Remicade treatment and possibly a trim of my beard. (If you didn’t know, I’ve been doing the “hockey playoff beard” thing until both of my girls got off their ventilator. Now I’m going to keep it (trimmed) until they’re both home.

Double Daddy Diary: April 26 & 27, 2009

Sunday, 4/26
–Moving day. Movers on time, cranked it out in three hours (7AM to 10AM). Of course, we had tons of help from parents – rented U-Haul got tons of stuff over to new house on Thursday.

–6:45 a.m. UPDATES:
Norah = doing really well, they let her rest last night
Alexandra = also doing well, no changes
Stable = good.

In-laws took my parents to the airport. I’m sure they didn’t want to go back yet – especially with such progress being made. (And the girls being so completely gorgeous and all.)

–12:04 p.m. UPDATES:
Norah = doing well, TAKEN OFF NITRIC OXIDE!!! HUGE step. Lower settings on ventilator, increasing feedings. Breathe, eat, home. Breathe, eat, home. (Our new mantra.)
Alexandra = Doing fine, no more space bubble over her head for humidity; feisty when eating, switching between tube and bottle. The other day, she didn’t like her bath. Now she’s not loving eating. Smelly + no food = future supermodel?

–3:45 p.m. UPDATES:
Alexandra = good visit, no news to report;
Norah = Dr. called to say that she’s down to 35% oxygen assistance, doing “rock solid,” and that if we were there to see Norah late tomorrow morning we might have a surprise…she might be OFF THE VENTILATOR! (We cried.)
Great guy, that doc. Even if he’s a Mets fan from Jersey.

–8:22 p.m. UPDATES:
Norah = no news, just keeping fingers crossed for tomorrow.
Alexandra = eating through a tube at this time, but made “all gone” with two bottles today; trying for three tomorrow; switched from NICU-type bed (not incubator) to “big girl” bed.

First night in new house. Feels weird, and will get a whole lot weirder when we’re able to bring the girls home.

Tried to hook up the Internet, giant fiasco. Will blog about it separately – don’t want to taint this great day and blog entry with negativity.

Looking forward to tomorrow!
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Monday, 4/27

Oy, such crap with the Internet. Unable to work from home or do anything online. (Again, check separate blog.)

But the big story on Action News…

9:00 a.m. UPDATES:
Norah = EXTUBATED!!! (No more ventilator, for your non-doctor-y types.) Breathing on her own, just with a little help from a nasal cannula. (One of those tubes that sticks into your nose a little bit.) They took out her arterial line last night, just one IV and that’s pretty much it! This is what we’ve been waiting for, folks. On to the eating!
Alexandra = also doing great, set for three bottles today (after an 8AM tube feeding). Up to 36cc of formula, and Shannon will get to do the 2PM feeding!

1:00 p.m. UPDATES:
Norah = went to visit her, took picture of her area without all that equipment. Looks wonderful. Shannon got to hold her up a little, and she’s so much more awake and moving around. Coming off the painkillers slowly.
Alexandra = saw her at 2PM, Shannon tried feeding her a bottle but she didn’t take to it much at this time. Mangia, girl, mangia!

Went to cable company to return equipment. Surprisingly short wait and cheerful customer service rep.

Back home for dinner, then back for a double visit to the girls…

8 p.m. UPDATES:
Norah = Shannon got to hold her a while, so awesome. Me, not going to “chance it” since I had a MRSA infection years ago. If I do want to hold her while she’s in the NICU, gotta gown and glove up. Not sure I want my daughter’s first memories to be of Daddy with rough blue papery skin and sticky smelly plastic fingers.

Alexandra = Got to her around 10PM so Shannon could hold her too. She makes all these great funny faces. Smiling one second, pre-crying tension the next, and this little Elvis-like lip sneer that gets me every time.

Both girls resting and sleeping a lot, which is good since they’ve been through so much so far.

Daddy Diary: April 21, 2009

I’ve taken to keeping a little notepad and pen with me at all times, so if I’m getting an update from the NICU staff I can write stuff down and relay the news accurately.

Good thing I studied journalism. (But a shame I never developed a skill for writing some kind of legible shorthand.)

9:04 a.m. updates:

Norah was very stable, doing good. No new changes. They were able to stop her dopamine and (BIG NEWS) remove her Foley catheter. So she was peeing on her own! (Strangely wonderful to hear that.)

Alexandra was doing OK after a fairly stable night. She was tolerating herh 3cc feedings so well, they were able to increase them. (Feedings through a tube, not a bottle yet.)

12:33 p.m. updates:

They were making “tiny little changes” to Norah, and she was doing pretty good. They were waiting on an echocardiogram to be performed in the afternoon.

Alexandra was also good, feedings up to 6ccs. Some ventilator changes, slight weaning off the oxygen, and her echo looked OK. Stable and resting.

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We went to see both of the girls in their respective NICUs in the afternoon, and all continued to be well.

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We then visited again after a dinner at the Two Brothers’ Grill up the street from our current place. The chicken salad wrap was actually pretty good.

Norah’s visit wasn’t great – the doc was kind of loud for a “Minimal Stimulation” area, and was pretty blunt in saying that she was still sick. Really harshed our mellow, especially Shannon, who was quite upset. We’ve been hearing such positive messages and “little improvements are good”-type talk, we maybe got ahead of ourselves a bit. Especially since the words “collapsed lung” were mentioned. But that’s something common with this situation, a nurse told Shannon when she saw how upset she was.

Alexandra’s visit was much better and more uplifting. She stretched big-time and moved around a lot when we arrived. And she even opened her eyes at Aunt Debbie – but not at any of the rest of us. Allegedly, her eyes are currently blue. But that could change.

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12:00 a.m. updates:

Norah was pretty good, she “liked” the changes they were making. Her blood gases were good, and no new medications were needed. (The blunt doc had said he had another med ready if they weren’t.) This made Shannon (and all of us) feel a lot better.

Alexandra was also good, no changes. Down to 29% oxygen help, and had a feeding shortly before I called. Stable – good.

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So what about me? I’m hanging in there. Strangely calm, maybe that means I just know they’ll be fine and dandy in a few weeks (or months). It’s been such a whirlwind, and we’ve been blessed to have not only great support from our collected family – but such caring and amazingly awesome docs and nurses. (Even Dr. Blunt-Talk.)

It’s unbelievable to see what they do all day, standing by a newborn’s incubator for hours and hours. Taking care of such helpless little babies is an incredible responsibility, but they do it with such skill and dedication.

As for the rest of our support system, we haven’t really told anyone outside the immediate family (and my work-folks). Really, until both girls are really doing better, we’re going to keep this quiet.

In fact, you’re probably reading this well after it actually happened. But I did want to document this journey, since it’s been maybe the most important five days of our lives so far. It would have been great to lean on our extended family and friends, but we’re just not ready for that.

Last night, we saw like 20 medical professionals crowded into a room next to the NICU, working on some unfortunate baby. The scene was very upsetting, to say the least.

Which makes us all the more grateful that each of our girls is taking her baby steps towards a ventilator-free, medication-free, and hopefully NICU-free future.

Night, all.

Daddy Diary: April 20, 2009

Oh, by the way, we’re moving too. So while our daughters struggle to learn how to breathe on their own in separate hospitals, we’re trying to pack the house.

Luckily, we have a lot of help from our moms and the rest of Shannon’s family. Throwing stuff in boxes or trash bags, quick drives over to the new place, visits to each hospital, it’s just insane. (And here I am at 1:38 a.m., dying for sleep, still needing a shower but still somehow stupidly blogging.)

SIDEBAR: One of the NICUs makes us do an entire process before seeing Norah (who is lagging behind Alexandra in her progress, but still getting better incrementally). You roll up your sleeves past your elbows, rinse with soap and wash up to those elbows, dry off, then rub sanitizer from fingertips to elbows. And we can’t even touch Norah anyway. END SIDEBAR.

Great things today, though. At our evening visit to Norah (we see each of them twice a day), she had her eyes open slightly for us. And when I took my father-in-law back to see her, she moved her little left hand as if to wave at us – despite being on a medication to mostly paralyze her (so she doesn’t fight the ventilator).

And Alexandra was fussin’ and fightin’ when we went to see her. Not crying, but just moving and flailing away with her teeny arms. I swear, at one point it looked like she was trying to both pull the ventilator out of her mouth and push down on a separate syringe full of medication. (She may be the feisty one.)

I’m sweaty, stinky and more exhausted than ever. Welcome to Fatherhood, dog!

Hoping for another day of good, stable reports tomorrow.