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 25, 2009

–Up for moving day, no calls by 10AM as expected. Told 1st moving truck died, diverted other truck, would be postponed from 12-2 PM slot to 2-4 PM slot, and to expect call around noon.

–9AM kiddie updates:

Norah = changed from high-frequency ventilator to conventional ventilator!!! Still on nitric oxide, but eating a little…”this is progress,” said our nurse

Alexandra = doing well, feeds fine, much more comfortable

–2PM kiddie updates:

Norah = really good; weaned from 20 to 10 on nitric oxide; 50% on oxygen; waking up a little, tolerating feedings, much more comfortable

Alexandra = resting, no problems, hoping to see eating for 2 days before the magic words: COMING HOME (hopefully within a week or so)

Because movers were now delayed until at least 5PM, actually went to see the girls around 3/4 PM. Both sleeping comfortably, didn’t want to bother them much.

Called movers around 5PM, before going to quickly browse Container Store. Said they’d check with team directly and get back to me in 5 minutes.

By 6PM, I had no call back and left three messages with them.

Just after 6, they called and said truck had been pulled over for random DOT inspection which takes a couple hours and they couldn’t call the office on their cell phone by law. Not sure I believe it.

Got upset with the guy, who said the whole thing was out of his control and that they’d be at the house by 9:30 or so. But that’s too late to move, especially to a smaller town. So we ended up postponing until Sunday morning, when the guy promised the truck and his three best guys would be waiting at 6:45 a.m.

Thus, we went to the new house and helped the parents, who were busy assembling and folding and putting away. (They have all been invaluably helpful, and we are eternally grateful.)

Ordered in pizza from Roma’s in Little Elm. Good stuff.

8:30 PM kiddie updates:

Norah = doing “fabulous,” PAL and PIC lines in successfully, just hanging out, no ventilator changes

Alexandra = doing “really well,” tolerating feeds, had a bath she didn’t like but now smelled clean 😉

More move stuff, put on new toilet seats (sis-in-law’s boyfriend did one, I did the other). Felt manly.

Called it quits around 10:30, drove parents back to their hotel.

Midnight kiddie updates:

Norah = just fine, letting her rest after a busy day

Alexandra = doing really well, drank 23 out of 33 cc bottle

Beat tired, and have to be up at 6AM to get ready for movers. Ugh.

Sleeping on couch at old house tonight. May have to brush teeth with Diet Pepsi.

Nope, water still on. 😉

Daddy Diary: April 22, 2009

–Picked up Dad at DFW.

–Hot weather, up to 89 degrees or so!

–Took Dad to Roasters deli. Huge portions.

–A couple errands (showed Dad what a clean Wal-Mart looks like).

–Visited Norah, then Alexandra.

–Then showed him our new house.

–Took Mom & Dad to check into hotel, 3 minutes down the road.

–Back to our place briefly, then Spring Creek BBQ with mom-in-law and sis-in-law.

–Saw shoeless toddler. Yecch.

–Back home quickly, then off to Double Dip for custard & treats.

–Back to Norah then Alexandra. Great news on both girls! Norah no more paralysis medication, waved to us and had her eyes open. Alexandra extubated = no more ventilator! Crying but raspy.

–Dropped Mom & Dad off at hotel.

–Back home, took care of cats, couldn’t stop doing stuff and get to sleep.

–Finally blogging now, going to get ready for bed.

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.

—————————

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.

—————————

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.

Daddy Diary: The most difficult three days of our lives

(Note: Other than the delivery time/date, some of the dates/times may be messed up. I think you’ll excuse me after reading what was going on.)

Shannon gave birth to our beautiful girls – Alexandra Faye Rose and Norah Vivienne – at 11:34 p.m. on Thursday, 4/16/09.

They were born at 34 weeks and change, and like all preemies, went immediately to the Neonatal Intensive Care Unit (NICU).

Thursday morning, everything seemed OK at first. The girls needed nasal cannulas (those tubes that go under the nose) for additional oxygen, but appeared fine.

Preemies need to be successfully breathing on their own before trying to feed, so they had IVs giving them their nutrients.

As Thursday went on, both girls were struggling with their breathing and were intubated (put on ventilators which did their breathing for them). Although this sounds – and is – pretty scary, we were told that this was pretty standard for preemies with respiratory distress (a common problem with preemies).

So we tried to get to sleep Thursday night with the knowledge that our girls had machines doing their breathing for them, in the hopes that they would be able to relax and heal and grow while the machines did their work.

The girls did OK, seemingly, on Friday.

At 4:30 a.m. on Saturday, we were awakened by a kindly, soft-spoken doctor telling us that Norah was not doing well at all and needed to be transported to another local hospital. At this other, more established NICU, they would administer nitric oxide gas treatment (along with the oxygen) to open up the stuff in the lungs that hadn’t unclenched because of her premature birth.

[Sidebar: Watching an episode of “House” as I type this. Interestingly, it involves a father trying to decide if his son should have surgery that could improve his life dramatically – but the surgery is removal of half his brain. As a new parent with two kids dealing with major health issues, this sure hits me where I’m living.)

So Norah was brought to us by the transport team before going on to the other NICU. We got to see her for a few minutes, then she was off. Needless to say, sleep was impossible after that.

There we were – Shannon recovering from her C-section with a painful incision, one daughter on a ventilator a few hallways away, the other 10 miles away on a ventilator with special gases being pumped into her. Not exactly the rosy picture of post-partum life we hoped for.

Saturday morning, I went with my mother-in-law to see Norah at NICU 2. We had to scrub up (wash your hands up to the elbows, then use sanitizer up to the elbows, then put on a gown and gloves. (And we weren’t even going to touch Norah.)

The NICU nurses were amazing. Constantly doing stuff to Norah – checking blood, running tests, it was a non-stop job.

After our visit to see Norah, we went back to be with Shannon and to see Alexandra. Shannon was – all we all were – incredibly upset, scared and living on pins and needles. But as the new mommy, Shannon got the worst of it. She (wrongly) felt guilty and thought she had done something wrong – even though every single person (medical personnel and family) told her she hadn’t. She completely quit caffeine and artifical sweeteners, never drank or smoked, ate the best she could, took her prenatal vitamins and saw the best doctors.

My mom flew in mid-day Saturday, and my sister-in-law and mom-in-law went to pick her up at the airport. When they got to the hospital, we all went to see Alexandra at NICU 1. Later that afternoon, we met up with my dad-in-law and bro-in-law, and we all headed over to see Norah at NICU 2.

The reports on the girls were “stable” – which has become our favorite word. Stable pretty much means “not bad and no worse,” and that’s all we were looking for at that point.

The gang went to dinner while I had the “celebratory dinner” with Shannon that they give to new moms before they’re discharged. Steak, lobster and “the best chocolate cake you’ve ever had.” Not to offend, but only the steak was halfway decent. The cake? Not even in the top 10.

Obviously, it wasn’t much of a celebration for us, although we did start to get slightly positive reports on each baby.

Saturday night, we got a little bit more sleep…until 6:30 a.m. Sunday, when my cell phone rang loudly. As the primary contact person, NICU 2 was to call me with any less than good news – so I picked up the phone with my own heart racing as fast as it could.

Luckily, it was just the night-shift doctor, wanting to update me on Norah’s condition – which was stable. Again, hard to fall asleep after a scare like that.

Shannon and I visited Alexandra after a lousy breakfast (great care, lousy food) and got another slightly positive report. The moms and sis-in-law showed up, then after a mediocre lunch we saw Alexandra again and Shannon got her discharge from the hospital.

We immediately took her to the NICU 2 hospital, where we went to see Norah. Shannon felt so good to see her (first time since Friday at 4:30 a.m.), and was thrilled to see the progress she was making. We each felt a huge weight lifting off our shoulders, as every few hours we seemed to be getting little bits of good news.

Each girl was slowly slowly slowly being weaned off the various medications and equipment, and as of midnight Sunday (going into Monday) each of our daughters was showing continuous slight improvements.

As happy as we are that the girls are doing better, this experience has been the most gut-wrenching time of our lives. Shannon still hasn’t had the chance to hold either of our daughters in her arms, and that breaks my heart. (I got to hold each of them briefly after delivery.)

All we can hope for is continued slow improvements, and that some day soon, we’ll have both of our girls healthy and at home with us.