Wake Up, Daddy!

Have you ever been awoken in the middle of the night by an alarm?  Not your alarm clock, but, like, the smoke detector, or fire alarm, or burglar alarm?  The kind of alarm that makes you go from a dead sleep to standing and taking action in less than two seconds?  If you have, you know how my night was.

Yesterday was a boring day.  Rachel and I sat in the room and watched Ginny sleep all day.  She didn't really make any progress, but we had expected her to get worse, so no progress was actually pretty good.  The plan for tonight was for Rachel to go sleep at her parent's house and I would stay here with Ginny.  Around 8 or 9, when Rachel was starting to get ready to leave, Ginny started waking and trying to sit up.  We'd been trying to keep her sedation at a Goldilocks kind of status (not to little, not too much, but just right - that's not as easy as it sounds, because every person reacts differently to different levels of medications). She's on three different sedatives at different doses, and we had tweaked the cocktail so that by 9:30 we thought we had it.  Rachel went home at 10, and I laid on the a somewhat comfortable fold-out chair, and was asleep by 10:30.

Shortly after midnight is when it hit the fan. I was awoken by the crash alarm and the voice of David, Ginny's respiratory therapist notifying all the staff in the unit that Ginny had pulled her breathing tube on her own.  (Keep in mind, I'm sleeping about three feet from her bed). Within a second I was on my feet trying to help David keep her still and bag her with oxygen so that her sats didn't drop too low.  It may have been three more seconds before her nurse was in the room, followed quickly by the rest of the PICU team.  I stood back and watched as they worked within a few minutes they were able to get her re-intubated. It appears that by using her tongue and thrashing her head, she worked her tube out to the point that it was no longer doing what it is supposed to.  I called Rachel as the team was coming in the room, and they were done by the time she got here.  It was all pretty scary. But she wasn't done there....

After about an hour of hanging out, and after the x-ray confirmed her tube was in place, Rachel went to the Ronald McDonald Room to sleep in a slightly more comfortable chair, and I stayed here in the room with "Genevieve the Destroyer".  To make matters worse, Rachel is not feeling well, either.  She probably also has RSV, though it won't be nearly as devastating because  of Rachel's advanced age, and she isn't immuno-deficient in any way.  (Yes, that's an old joke.  That's what you get for putting "40" on every one of my birthday cakes since I turned 36...)

I got a little bit more sleep before Ginny's next attention grab.  About 3 am, I was awoken by David again, with Pam and another respiratory therapist working on Ginny.  Her sats were down to the low 80's but she had bit down on her tube and was trying again to work it out.  This time it didn't take long to get her calmed down again and "sleeping" pretty comfortably.  I got a few more hours of sleep, and now I'm waiting for rounds to hear about today's treatment course.

I've heard from quite a few professionals up here in the PICU that they haven't seen a fighter quite like Ginny before.  She's on a lot of sedative and still manages to  open her eyes and try to fight against anything she doesn't like.  Several folks have commented on her physical strength.  She is one tough little girl.  My conversation with David went something like this: "Where's she get that from?  Which one of you is the stubborn ornery one?" he asked me.  "That's the problem.  It's both of us..." I said.  "Good luck with that when she's a teenager."  Yeah, I know....

Right now she's pretty sedated, but occasionally opens her eyes and tries to sit up and raise her arms.  She's restrained so she can't pull her tubes out anymore (at least not with her hands).  She's on the ventilator with 65% oxygen, and getting inhaled nitric oxide at 20 ppm (I probably have a blog entry from a couple years ago about the "baby crack" effects of nitric...), she's on 3 sedative drips and 3 antibiotic drips, in addition to her IV fluids.  She's got a tube in each nostril - a nasal gastric tube to put things in her stomach, like her oral sildenafil meds, and a dopoff tube that goes past her stomach to the top of her guts for some nourishment and to keep things moving.  It's not a pretty scene, so I won't be putting any pictures up for a while.  I will add this one of her in the ER on Thursday, just to keep it a little cute.

Rachel is going to the clinic today to make sure she doesn't have the flu before she comes back in the room, so it's Daddy & Ginny for most of today.  I'll keep everyone posted on her progress as the day goes on.  Thanks to everyone for their love and support.

This Sucks, Part Deux

Well, I guess it's time to fire this thing up again.

Yesterday at  a little before 10 I got a call from Ginny's daycare. She had a fever and would have to go home.   When I picked her up she certainly wasn't herself.   I called her pediatrician and got the next available appointment at 11:30.  Ginny's had a cough and green boogers for a few days and had just finished a course of antibiotics for what we thought was strep. I thought we'd get some more meds and spend the afternoon watching Peter Pan.  Boy was I wrong.

The pediatrician checked her pulse ox as a matter of regular treatment.  She was at 85%.  "I don't like that number," I told the nurse. "Me either," was the reply.  She was given a nebulizer treatment and oxygen,  and checked again. No improvement. Another nebulizer treatment and more oxygen.  No improvement. So.....another ambulance ride for Ginny and Daddy - this time to the new Shands pediatric emergency room.

If you read back in this blog to the very first entry,  you'll see that people don't always yield to ambulances.  Let me be more explicit now: if you drive like an asshole around an ambulance you are endangering the life of someone very special. Don't do it. Also, if I see you, I will follow you. Your day will not end well. I promise.

Ginny was great in the ED. She seemed like she was feeling better, but her oxygen was still pretty low. She was on oxygen and continuous albuterol through a mask (that looked like a fish face).  We were transferred upstairs to the PICU about 6 pm or so.  Upstairs things got a little different.

Even though she was relatively comfortable, she was getting sick of the mask.  She kept taking it off, so we had to give her the nasal cannula. She didn't like that much either, so she ripped it off after 30 minutes. Her oxygen wasn't getting better, so it gave us a chance to try the high-flow nasal cannula. That lasted a little while before she took that out, too. And again, oxygen was still not improving.  We knew that eventually this could lead to intubation,  but there was one more thing to try: the CPAP.

David was our respiratory therapist last night. He's a big dude, bigger than me, and a veteran of two tours in Iraq and one in Afghanistan. He was no match for Ginny. There was no way in hell anybody was going to strap another apparatus to her face. This all happened about 3 o'clock this morning.  We made the tough decision to quit wrestling with her, sedate her and put her on a ventilator.   She really didn't like the IV in her foot, but in retrospect, probably handled it better than Rachel would have.

The intubation went well, but shortly after her sedation started to wear off.  With her breathing tube still in, she sat up in bed and tried to pull that tube out,  tape and all.   We've adjusted her meds and she's resting comfortably.  We've been operating under the assumption that pneumonia is the primary problem. Not all of the labs are back yet, but just a few minutes ago we learned that one of Ginny's problems is respiratory syncytial virus or RSV. You can read more about it here: http://kidshealth.org/parent/infections/lung/rsv.html

Her symptoms are probably going to get worse before they get better.  We expect to be in the PICU until at least Sunday, most likely longer.  There's a great crew up here, many of whom remember Ginny from her last stay on the 10th floor.  They make it a little bit easier, but I wish we were having a reunion under easier circumstances.

Thanks to everyone for their love and support.  We really appreciate it.

Your Parents Are Nerds

I know it has been a while since I posted anything here, and a lot of people have asked me when I'm going to write more. It's all in my head, but this fatherhood gig is hard work. Not to mention my actual job. I've promised myself I would get back to writing, I hope you're still around to read.

As I've mentioned before, both Rachel and I are civil engineers. We both love our chosen profession. So much so that even when we're not at work, we're usually talking about some aspect of engineering or otherwise "dorking out." Part of that is our involvement with the American Society of Civil Engineers. We have both been very active in ASCE since we were students. Rachel is an advisor for the University of Florida students, and I hold a seat on the Region 5 Board of Governors (Region 5 is Florida, Georgia, Alabama, Mississippi, and Louisiana - we probably need to come up with a better name).

So last weekend was ASCE's 140th Annual Meeting. It was special to us for a few reasons. First and foremost, our dear friend Kathy Caldwell was installed as the President of ASCE (the whole thing!) She is just as proud to be a civil engineer as we are, and she's put a lot of work into getting there. Congratulations, Kathy! Oh, and the meeting was in Las Vegas, too...

Ginny took her first plane ride. It is kind of amazing to me that a 5 month old could be flying around the country. My first plane ride was a month after my 18th birthday and it took me to Fort Leonard Wood, Missouri for Basic Training. Not exactly a vacation - it was all-expense-paid though. Ginny was great on the plane. She slept all the way out and all the way back. She did cry all the way home to Gainesville from the Tampa airport, but that's OK.

If you're civil engineers and you drag your kid all the way across the country to Las Vegas, it is kind of required that you go to a civil engineering landmark. While the Bellagio fountain might qualify if I were some kind of hydraulics nerd (sorry Dr. Thieke), we had to take Ginny to two others.

This is Ginny and me standing on top of the Hoover Dam. Behind us is the Mike O'Callaghan - Pat Tillman Memorial Bridge. It had opened just a couple days before we got there. The dam on the other hand, just celebrated it's 75th Anniversary this week. Hopefully, we'll go back for the 75th Anniversary of the bridge... or at least Ginny will.

This is Rachel and Ginny on top of the Mike O'Callaghan - Pat Tillman Memorial Bridge. That is the Hoover Dam in the background. If Ginny doesn't look that impressed, it might be because she was a little freaked out being 900 feet above the Colorado River on a windy day. She only weighs 17 pounds. (I wouldn't let Rachel take her out of the stroller for the picture. OK, maybe I was the one a little freaked out. Can you believe I used to jump out of planes?)

You're probably also wondering about Ginny's health. She's doing great! At her last Cardiology appointment, they wondered if there was ever anything wrong with her. She is gaining weight, getting taller, and hitting all of her development milestones.

Since we came home from the hospital, Ginny has met a lot of people, and helped some of them along the way. Our next chance to help is coming up on the 14th of November. March of Dimes is holding the Gators March for Babies. Ginny has her own marching team, and she hopes that you'll help her by either walking, or making a donation. You can sign up for Team Ginny Lee at: http://www.marchforbabies.org//team/t1502476

We hope to see you there! OK, now a few more gratuitous baby pictures:

Gratuitous Baby Pictures

It's not that I've become lazy over the last week - or even that there hasn't been much to write about. It's just that we're both so damn tired. Yeah, all you parents - especially mine - are laughing right now. Real funny. So, since I haven't had the chance to drop some profundity on you this week, I'm just going to show you baby pictures - and really, who doesn't like baby pictures?



I'm now back to work full time, almost as if I never left. Just as I had suspected, the atmosphere in "the shoe" had grown eerily pleasant. I put an end to that. The ABG (Angry Bitter Guy) is back! If you haven't had an encounter with the ABG, don't think of him as disgruntled. Think of him as colorfully contrarian. Still lots of profundity, just with a lot more profanity. Although, no matter how tough the day is, I'm still perfectly happy to come home and make an ass out of myself just to get a few little smiles and giggles from the kiddo.


Last Friday Ginny went to the pediatrician, Dr. Wyatt at NFRMC. She had gained 9 oz in one week. We stopped fortifying her milk immediately. She's put on more weight this week, but we won't know for sure how much until Friday's weigh-in.

"You can't possibly be hungry again!"

Unsolicited Advice

Well, today's open house at the Ronald McDonald House of Gainesville was a definite success. Today we raised $2,225 for Ginny's Room. That brings the total amount raised so far to $4,690. Thank you to all who donated. Your generosity will go a long way to bring a little comfort to a families with sick children. If you haven't had a chance to give yet, please visit the newly designed Ronald McDonald House website at www.rmhcncf.org to make your donation today.

In a few other earlier posts, I mentioned my friend Matt Z. He and is wife Jenny came up and helped us a lot in the week right after Ginny was born. Jenny is a nervous cleaner, and thankfully she got nervous at our house and helped Wendy do a great job of cleaning for us. Honestly, they did a much better job than we would have done.

While Jenny and Wendy were inside cleaning, Matt and Doug were outside doing yard work. They also did a much better job than I would have. After they were done with the work they came to the hospital for a short visit. "When you get home, I've got a surprise for you," Matt said. Those words usually send a shiver down my spine. Matt and I rarely see each other without consuming substances known to impair our ability to operate machinery. In fact we are often too impaired to operate the remote control for the DVD player and end up watching Borat four times in a row.

When Rachel and I finally pulled in the driveway that night at about 11:00, we immediately saw the surprise. In addition to raking the entire yard, Matt and Doug had rented a pressure washer and washed the house, walkway, porch, and driveway. Well, almost the entire driveway. When the headlights hit end of the driveway, we saw a 3 foot square of black with a giant letter "Z" in it. "That sumbitch painted my driveway," I grumbled. When I got out of the car I realized that he had pressure washed the entire driveway, but left a square with a clean Z.

"Once I got done with the "Z", I realized I should have done an H," he said when we got inside. "Oh well, an artist has to sign his work, I guess." I laughed, and I liked it so much I left it. Now I use it as a landmark to give directions to the house. It's probably good he didn't do the H anyway. The Shands helicopter might have tried to land in the driveway.

This weekend Jenny and Matt came up to visit. Great news: Jenny is pregnant! Apparently our experience over the last two months has not scared them out of having babies. After congratulating them, Matt and I sat down for an adult beverage. I promised him I wouldn't give him any unsolicited advice on getting through pregnancy and childbirth - the man's perspective. I got plenty of unsolicited advice, and - quite frankly - it can get obnoxious and annoying. If he wanted advice, I told him he would have to ask.

Then I got to thinking about all the great kernels of wisdom I have gained over the last eleven months. They are just too good not to share. Here are a few of them, just for you Matt:

First, no matter how strong the urge over the next nine months - and the urge will be strong - you must never utter the question "What the hell are you crying about?" You should never do this because: A) That question will not stop the crying, and; B) The answer will probably be "I don't know." Just give her a hug and quickly go out to the garage and work on something. It will pass.

I know it will be a pain to clean out her cat's litter box, but she just can't do it. There is just too much risk of toxoplasmosis that she could pass on to the baby. Think of it as a trade-off: In exchange for you cleaning up after her cat, she will be your designated driver for nine months. Be careful not to rub it in, though. When you're drunk and she's not, she can do a very good job of making that tumble down the stairs look like an accident. You don't want to go to work with rug burn on your forehead. Again.

Boobs! They don't call them fun-bags for nothing. Just be gentle because at times they will be sore. Also, now you can be your own lactation consultant. You were starting to freak Rachel out.

Go to as many doctors appointments with her as you can. She'll appreciate the support and you'll be able to help her remember stuff she forgets. I think I read that pregnancy kills like 83.5% of a woman's brain cells, so she'll need help remembering. This is also a good time to start keeping a list of all the people you watch put their hands in your wife's vagina. (They're checking her cervix. Honest.) If labor and delivery gets a little tough (like ours), this list can get quite extensive. It's a good idea to keep a small notebook and pen handy.

Fat jokes - Really, only I can get away with that kind of stuff. Leave it to the professionals.

Don't let your wife get discouraged if her obstetrician doesn't want to be "friends" on Facebook. She might have a "once I have my hands in your vagina we can't be Facebook friends" policy. It's a good thing you don't have that policy. You'd have a lot less friends.

Don't spend a lot of money on cutesy little nursery decorations with cliche sayings like "Precious" and "Daddy's Little Angel". Instead, make your own. Use classic parental sayings like, "I'll give you something to cry about!", and "Wait until your father gets home!" and my favorite "This is why we don't have nice things!"

Seriously though, congratulations. A year from today, you won't remember what life was like without that kid. I think that's nature's way of numbing the pain.

Happy Anniversary

Tomorrow the Ronald McDonald House of Gainesville will celebrate their 28th anniversary. They will hold an open house from 11am to 1 pm and they will be kicking off Ginny's Room, a new room sponsorship program. You can read more about it in "On Gainesville and Giving" from July 6th.

If this seems a little repetitive, let me explain. I just got a message from a friend that is willing to match - dollar for dollar up to $1000 - for every donation received tomorrow during the open house. So, if you would like to give, please come by the Ronald McDonald House of Gainesville at 1600 SW 14th Street between 11 and 1. If you can't make it but would like to give, please call the House at (352) 374-4404.

And now, another gratuitous baby picture:

She really didn't like that bath as much as I let on...

The New Normal?

I wouldn't exactly call it "clamoring," but several people have asked for a new post and some pictures of Ginny. The picture above was just before we left the hospital on Thursday. The kid can sleep through anything.

Since we got home on Thursday evening, we've been trying to find what our new "normal" is like. On Friday afternoon I went to the office to see if I could still find my way there, and to remind everyone what I looked like. I didn't want anyone to call the cops because an angry bearded man was rummaging through the office down the hall.

Today Ginny had her first pediatric appointment, so I went to work a little late. It was nice to go to a doctor's office and just talk about regular baby stuff - like how much she weighs and and what color her poop should be - and not have to discuss cutting her open to rearrange any more plumbing. We talked about how much she should eat. When we got home on Thursday, Ginny started eating 60 ml every 3 hours. By Friday night, it was more like 90 mL every three hours, and today she is sucking down 120 mL about every two and a half.
When she's done with that she just chews on her hand for a while. It's probably a good thing she doesn't have any teeth or she would be missing a finger. We also talked about how much she should sleep. Luckily Ginny sleeps about 7 hours straight each night, so it's a little easier on Rachel. (Like my daughter, I can sleep through anything.)

So, we're still trying to figure out some sort of routine. I suppose in a few weeks we will know what works for us. We've had a busy time over the last two months, and there isn't really any sign of it slowing down. I think we like it that way.

This Wednesday Ronald McDonald House Charities of North Central Florida will celebrate the 28th anniversary of the Ronald McDonald House of Gainesville. They will hold an open house from 11 am to 1 pm to celebrate and to announce the kick-off of the "Ginny's Room" room sponsorship program. (If you haven't heard about Ginny's Room, check out my post "On Gainesville and Giving" from July 6th.) We hope you can spare a few minutes to stop by and say hello. Unfortunately, Ginny won't be able to make an appearance this year because she hasn't had any of her immunizations and we don't want to risk her getting sick from a crowd - and we hope there will be a crowd. The Ronald McDonald House is at 1600 SW 14th Street in Gainesville. We will see you there.

And now, the gratuitous post-bath photo: