Thursday, October 28, 2010

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:

Wednesday, August 4, 2010

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!"

Wednesday, July 28, 2010

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.

Tuesday, July 27, 2010

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...

Monday, July 26, 2010

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:

Thursday, July 22, 2010

Happy Birthday to Me!

Ginny has been eating like Kobayashi since Tuesday evening. She sucks down at least 60 mL every 3 hours and hasn't spewed once. All great things. So, this morning we took out her stroller and car seat and set it up next to her crib in the hospital. "Are you ready to go home again?" we were asked jokingly during rounds. "Subtlety is not my strong suite," I replied. Just ask the herd of jackasses at parking services.

Within about 45 minutes our stuff was packed, Ginny's monitor was shut off, the leads were taken off, and her IV and PICC were removed. We strapped her in the stroller and we were off.

Since it was Thursday, we decided to stop at the March of Dimes NICU family lunch on our way out. I know I've mentioned it before, but thanks again to Gator Domino's for donating pizza to the March of Dimes every Thursday.

Today's lunch was a special one. On Friday, July 30th at 7:00 pm, the University of Florida football team will host the 3rd Annual Gator Charity Challenge. (You've probably heard of them, Nicole. They're kind of a big deal.) Some of the athletes on the March of Dimes team stopped by to sign some autographs and have lunch with us. They were March of Dimes Team Captain Duke Lemmens (football, #44, DE), Billy Steinman (football, #60, OL), and Claire Spurling (track & field - she's a pole vaulter). Of course they had already heard about Ginny (she's a pretty big deal, too).

If you are in Gainesville - or anywhere in Florida, really - you should come support these great charities. Check it out at: http://www.gatorzone.com/story.php?id=18308. We'll be supporting the March of Dimes team this year.

After lunch we loaded the car and headed home - this time for good, hopefully. When we got home, we fed her, changed her, and put her to bed. Today is my 35th birthday, and I couldn't have asked for a better gift.

Tuesday, July 20, 2010

Problem Solved

We dropped Ginny off at the OR at 10:00 AM and she was back in her room by 11:20. She has just a couple of tiny incisions to add to her quite impressive collection of scars and she is doing great. She has taken some Pedialyte by mouth and kept it down, so we are back to working on feeding. Her "mechanical" issues with suck/swallow have been fixed and now it is just a matter of keeping it down. We had a visit from Dr. Baines (the other Dr. Baines, that is)and we are reasonably sure we will be home by Friday, if not earlier.

I'm planning on making a couple of appearances at the office over the next couple of days just to remind people of what I look like, and then I hope to be back to work next week. It's been so long, it will probably feel like I'm starting a new job.

Excitement

After only getting a couple hours of sleep on Sunday night, and that being in a recliner at the hospital, Rachel and I slept a little late this morning. We got to the PICU at about 9:30 this morning. As we were waiting at the desk to be buzzed into the unit, Rachel's phone rang. It was our nurse, Amanda, letting us know that Ginny was about to be wheeled to surgery. We hurried to her room and helped Amanda get all her monitors and things ready for transport. The three of us brought her down to the second floor and dropped her off in the care of Dr. Islam at 10:00. If everything goes according to plan, she should be back in her room by noon.

Monday, July 19, 2010

Problem Identified

We actually had to take Ginny downstairs to radiology for her ultrasound rather than them coming up here. The radiologist was able to identify Ginny's problem as hypertrophic pyloric stenosis (HPS). HPS is a narrowing of the opening that goes from the stomach to the intestine due to an enlargement of the muscle around it. This is a known, but not very common side effect of the drug PGE that she was given to keep her patent ductus arteriosis (PDA) open before her heart surgery.

Ginny will need surgery to repair her HPS in the next few days. The good news is that the surgery can be done laproscopically and we could be home (again) only a few days after the surgery.

Friday, July 16, 2010

It's 3 AM - Welcome to Fatherhood

Teaching Ginny to eat has not been as easy as we thought it would be. The difficulties started at about 2:30 Friday morning when Ginny spit up her dinner and ejected her N-G tube with it. Rachel was a good sport about shoving a new tube up her nose and into her stomach. Friday was a zombie day for all three of us - it was the first day that we didn't wake up at or have to drive to the hospital since May 27th.

Saturday was a pretty good day. Ginny has learned how to eat from the bottle fairly well. We were instructed to give her whatever remained of her feeds via the N-G tube and a food pump. She did well with this in the morning, but as the day progressed she would take less by mouth at each feed. By the afternoon she started spitting up as much as we were pumping into her. It seemed like someone told me to use my kid to produce foie gras.

Sunday morning was pretty good, too, but it deteriorated a lot faster. By 1 o'clock in the afternoon she was spitting up (read: projectile vomit) as fast as we could pump it in. We stopped and called our practitioner. She told us to lower her feed volume and space the feeds out to 4 hours instead of the 3 we were originally instructed. The 5 o'clock feed went well, until the 9 o'clock feed. That's when she launched 2/3 of her 5 o'clock feed at Rachel. The remaining 1/3 went down the front of my shirt about 30 minutes later. We called our practitioner and she told us to take Ginny directly back to the PICU.

We've been here at the PICU since about 11:30 last night (it is about 8 am as I write this). Almost everyone has given us a quizzical look and asked "Didn't you guys go home the other day?" Indeed we did, but apparently we just can't stay away. We're waiting for the ultrasound folks to come by and take some pictures of Ginny's guts. Please pray that whatever it is that is upsetting Ginny's tummy, we can get it easily fixed.

Thursday, July 15, 2010

Enough Said


That's Ginny, asleep in her crib, at home. In a couple days life will begin to approach "normal" - whatever that is. I'll keep posting updates on her continued progress getting off the feeding tube. It's good to be home. Thanks everyone.

Wednesday, July 14, 2010

Homeward Bound

The past four days have been considerably less than exciting.

Our Occupational Therapist Christine left us for the weekend with a plan to get Ginny eating. As usual, Ginny had plans of her own that didn't exactly match up with ours. The goal was to get her eating 65 mL through the bottle by Monday. We would do that beginning with 3 oral feeds on Saturday, then 4 on Sunday, working our way up to all 8 feeds through the bottle. Saturday started off great with Ginny taking 20 mL in the morning, but decreasing with every feed after that. Same on Sunday. She just didn't seem interested.

When Christine returned on Monday, we tried with a different type of nipple to see how Ginny would respond. She did well in the morning, but then continued to lose interest as the day went on. We removed the feeding tube for a few hours yesterday morning to see if that was interfering with her swallow, and to get her into a hunger-satiation cycle. That wasn't working either. Rachel stayed at the hospital last night with Ginny to try to get her in the habit of eating by mouth at every feeding. Nothing seems to be working. It really is quite discouraging.

This morning during rounds, Dr. Saidi (cardiology) suggested to Dr. Malhotra that perhaps since we live in Gainesville, and we are pretty smart and responsible parents (sadly, a lot of their patients are not) that we could take Ginny home with her nasal-gastric tube and continue to teach her to feed at home. "Would you be comfortable with that," Dr. Malhotra asked. "Can I bring the car around now," I replied. Things don't quite move that quickly around here.

This afternoon we have been going through the discharge plan - learning how and when to administer her various medications, how to work the take-home feeding pump we were given, and how to make sure her nasal-gastric (NG) tube is in her stomach correctly. Shortly she will get her car-seat test. We have to strap her in her car seat to make sure she doesn't have a freak-out that will require medical attention.

Tomorrow morning Ginny will head down to radiology for another swallow study. Hopefully she will be able to graduate to the standard-flow nipple. If she passes, we'll switch nipples. Either way, we're switching cribs. In the afternoon, we're strapping her in the car seat and heading to the house. Tomorrow will be a very good day.

Friday, July 9, 2010

The D Word

For the past two days we have been working on feeding. Yesterday's radiographic swallow test had mixed results. Ginny did well protecting her airway while sucking on the low-flow nipple, but seemed to have aspirated a little milk while using the standard and high-flow nipples. The Occupational Therapist came up to work with her a little after the test, and she did OK.

Today the OT was back and Ginny did well with her morning feed. My parents got to watch me feed her before heading back to Connecticut. (We're using the bottle for now. No, Matt Z, I have not been fitted for a man-bra.) They have been down here for about 5 weeks and needed to get home.

During morning rounds Dr. Malhotra (Dr. Bleiweis' partner and a very skilled doctor in his own right) actually used the D word - discharge. We have a plan to get Ginny feeding without the tube - and if she can stick to the plan - we could be home as early as the middle of next week.

Ginny's afternoon feeds didn't exactly go according to our master plan, but we think we've figured out the problem. From the day of her closure until a couple days ago, she was receiving her milk through a tube that went through her nose, down her esophagus, through her stomach, and into the first part of her small intestine. She was fed continuously through that tube at 10 cc per hour. After her swallow test, that tube should have been pulled back so that it emptied into her stomach. Whatever she didn't take from the bottle would be fed to her through the tube. We think that tube didn't get pulled back as far as it should have been, so when we tried to feed her 30 cc through the tube this afternoon, it didn't go to the right place. That caused her quite a bit of discomfort in her belly, but we've pulled the tube back some and she's feeling better.

The only thing keep us here at the hospital right now is Ginny learning how to eat. We're a little frustrated because it sounds so simple, but it really isn't if you think about it. She has to coordinate sucking, swallowing, and breathing all at the same time without drowning in milk. Most babies learn that in the first two hours of their lives and it becomes instinctive as soon as the figure it out. Ginny is six weeks old today and she hasn't been able to eat for most of her life, so it doesn't come as easy for her. We're OK, though. We'll stay here with her as long as it takes.

Wednesday, July 7, 2010

Viva Espana!



Ginny had a big day today - not the biggest day she's ever had - but a big day. Yesterday she had a bedside swallow test. She didn't do very well, so we tried again this morning. She did great, sucking down 13 ml of milk in no time. She'll be the chugging champ of her sorority. Or NOT. She'll have one last study tomorrow with radiology before they let her loose on Mom's breasts.

Dr. Malhotra removed her chest tubes and pacing wires just a little while ago. We took the saturation monitor off her forehead and she doesn't need the nasal cannula anymore, so she has a few less lines. Soon we'll have the wireless version of Ginny Lee. We'll call her Ginny 2.0. We also gave her a bath and washed her hair. All this while she watched the Spain vs. Germany World Cup Semifinal.

Some of you know that Rachel is a big soccer fan. Me - not so much. Rachel insists that Ginny will be a soccer player. I think if God wanted us to play soccer, he wouldn't have given us arms. Sorry DW.

Tomorrow we're going to bring the grandparents in to see her for the first time since her surgery. We are still going to hold off on any other visitors for a while. I know everyone is anxious to meet her, but I hope you understand. Thanks to everyone for your prayers and support.

Tuesday, July 6, 2010

On Gainesville and Giving

In the months before Ginny was born, Rachel and I often commented about how much we like living in Gainesville. A lot of people that graduate from the University of Florida can’t wait to get out of town because they see it mostly as “just a college town.” College towns do have their drawbacks. When school is in session, it can take you a while to get a seat at a restaurant. If nightlife is your thing, you will have to put up with the occasional inebriated 20 year old girl crying outside a bar over something trivial – but that’s actually kind of entertaining. Other than that, Gainesville has everything a much bigger city has except crime and traffic. We love it.

Our experience with Ginny over the last month has only increased our love for Gainesville. Given her condition at birth - pulmonary hypertension combined with her heart defect - if she were born somewhere else she may not have survived. That little fact is not lost on Rachel and me. We realize how incredibly fortunate we are to live in Gainesville. Not everyone is this lucky.

Soon after Rachel and I got into the hospital with Ginny we started to become aware of the needs of the families around us. We immediately started trying to find ways to help. I've already mentioned Ginny’s starring role in a TV commercial for the March of Dimes. The UF March for Babies will be coming up this fall. We also did a radio spot for the Children’s Miracle Network, whose fundraiser will be coming up next month.

We’ve met families from all over Florida and the eastern US with children at Shands. Some of them – like the families of kids waiting for organ transplants – are here for months. Some families are actually here for the better part of a year. When you’re away from home for that long, even the cheapest of cheap hotels can be an incredible financial burden. I can’t imagine that on top of the burden of having a sick child.

One organization that helps families with sick children – I’m sure you’ve heard of them – is Ronald McDonald House Charities. Here in Gainesville, Ronald McDonald House Charities of North Central Florida does two things to support families. The first is the Ronald McDonald House of Gainesville, which has 30 rooms for families. The house is a few blocks away from Shands, but it is open to families with a child in the hospital, regardless of which hospital in town. The other is the Ronald McDonald Family Room here on the 10th floor of Shands. The room is a comfortable place for families to relax and have a snack or catch some rest without having to leave the hospital.

There is no charge for using the Ronald McDonald facilities, but they do ask for a $10 donation for each night a family stays at the house - though the true cost of their operation is much higher. Sadly, even this small amount is beyond the means of some families. We wanted to find some way to help these families.

This month Ronald McDonald House of North Central Florida is celebrating their 28th anniversary. As part of that celebration, we are helping them start a new room sponsorship program called Ginny’s Room.

Ginny’s Room will allow individuals, organizations, or corporations to sponsor a room in the Ronald McDonald House of Gainesville. All room sponsorships will be renewable on a 12 month basis for an annual gift starting at $5,000. The room could be a guest room, kitchen, administrative office, TV Rooms, playroom, living room, laundry room, or the courtyard.

These room sponsorships make a direct impact on the lives of the over 800 families that stay in the House each year by providing the necessary annual income RMHC of NCF needs to cover the approximate $100 a night cost to operate a single guest room.

Sponsorship includes a plaque with your name placed on your sponsored room, recognition in the Ronald McDonald House Charities’ newsletter and on their website, a special keepsake to display in your home or office, and the knowledge that you are helping a child and their family during a very difficult time.

Now, I know that times are tough – and $5,000 is a lot of money. If you are financially blessed enough and moved to do so, please sponsor a room at the Ronald McDonald House of Gainesville. If you are like me and you are motivated to help, but not quite financially able to give $5,000 right now, there is still a way you can help. In order to get Ginny’s Room started, Ronald McDonald House will put Ginny’s name on a room and allow our friends and family to contribute towards that room. Many people over the last month have asked us what they can do to help. As I’ve said before, we are lucky to have good jobs with gr eat benefits and a wonderful support system of friends and family. Here is a chance to help us help others.

A lot of you have already helped us in a lot of different ways and we could not have gotten this far without the prayers and support that all of you have provided. Although we are not home yet, we will be soon enough. Unfortunately another baby will take our place as soon as we leave, and they will need help too. Please help their family by donating a night in Ginny’s Room at the Ronald McDonald House. You can send donations to:

Ronald McDonald House Charities of North Central Florida (RMHCNCF)
1600 SW 14th Street
Gainesville, Florida 32608

or donate with a credit card at www.rmhcncf.org

Please note “Ginny’s Room” somewhere on the check or with the donation. If you have any questions, please contact Rebecca Haggerty-Williams at (352) 374-4404 or info@rmhcncf.org.

Monday, July 5, 2010

Do It Yourself Recovery

Yesterday Ginny had her left atrial line removed and she was weaned off of several medications. Her feeds were increased to 9 cc per hour and she is breathing room air, although through a nasal cannula. Apparently that wasn't enough progress for her. Somehow overnight she managed to work free her right atrial line. The medications that were going through that line were just dumping into her chest cavity and being removed through the chest tubes. I guess she didn't need them that badly. She is recovering nicely. We don't have anything more planned for today other than increasing her feeds by 1 cc every four hours. Tomorrow she should get her swallow study and maybe even have her chest tubes removed. Then we will be closer to having someone take this picture of us:



In case you are wondering, that is a picture of Baby Joseph and his parents Max and Deborah on their way home to Baton Rouge, Louisiana. They were discharged on Friday but didn't make it home until Saturday night. Apparently long road trips don't go as smoothly with a baby in the car. I think they're OK with that.

Saturday, July 3, 2010

Today's Adventure

Ginny was taken off the ventilator and extubated at about 4:30 this afternoon. She is a bit groggy and squirmy, but she is doing great. The next step will be to remove the tube attached to her left atria that was placed to measure her atrial pressure. That should happen some time tomorrow. After that we will remove her right atrial tube, then her chest tubes. After the chest tubes have been removed we'll be able to bring the grandparents in for a visit. We're not exactly sure when that will be, but we're guessing some time around Wednesday of next week.

Tuesday Ginny is scheduled for a bedside swallow study. If everything goes well, she will be feeding by mouth (either bottle or breast) by the end of next week. We appreciate everyone's help and support through this difficult time. A lot of people have asked if there is anything else they can do to help. In the next few days we will be sharing a new program at the Ronald McDonald House called Ginny's Room. Please keep checking back for details. Thanks you again for all your help.

Friday, July 2, 2010

Closing Time

Today was a long day of waiting. This morning when we came in Ginny was completely off the nitric oxide. We were told that Ginny's chest would be closed today, but there was a big schedule of procedures for Dr. Bleiweis & Team to accomplish. We were actually the last on the list, and Dr. Bleiweis called at 9:00 pm to let us know she was recovering nicely. We sped back over to the hospital and Ginny is doing great!

They have wired her sternum back together, sewed the muscles together and used Dermabond - a superglue-like substance - on the skin. She is going to have one heck of a nasty scar (at least from the looks of it now), but she has a strong heart, and that's what matters. Tomorrow, she will be extubated and her feeds will start again. If everything goes as planned, we could be home with her in a couple of weeks.

Thursday, July 1, 2010

Thursday Morning Update

Ginny continued to improve overnight. This morning she was taken off of the pacemaker and her heart rhythm is doing great on its own. She is holding at 50% oxygen through the vent and has been weaned to 8 ppm on the nitric oxide. Her chest tube is draining fluid well and we could see her chest closed as early as tomorrow evening. She still tries to fight against the sedation, so we keep tweaking it. She is doing great. Thanks to everyone for all your prayers.

Wednesday, June 30, 2010

Evening Progress Report

Ginny is doing well. She has been weaned down to 12 ppm on the nitric oxide, but still at 50% oxygen. She has also been weaned off insulin. The nurses spent most of the day trying to keep her blood pressure in a good place, her heart at a good rhythm, and getting her sedation just right. This kid is quite a fighter. She was trying to beat over the pacemaker and didn't want to take the sedation. We have convinced her that all this stuff is for her own good and everyone is very happy with her progress. We were told by one of the doctors that we should be able to close her chest in 2 to 3 days. A good, boring day.

I said I wouldn't post any more pictures of Ginny, but just to give you an idea of what it is like in here, I'm going to share this one picture with you.



This is the view from my chair. In the foreground you can see 8 of her 14 IV pumps (one was added over night) and her food pump. (Ginny has a tube that goes through her nose, down her esophagus, and through her stomach to the first part of her intestine. She gets 1 cc an hour through this tube just to keep her guts working. Maybe the hospital has some kind of deal with Pampers - I don't know.) To the left you can see her nitric oxide system and the ventilator screen behind that. Behind the IV pumps is baby Ginny. It can be kind of intimidating, but we have gotten quite an education over the last month, so it is a little less so. Also, note the Gator mobile keeping an eye on her.

An Uneventful Evening

Ginny had a good night. She has been weaned down to 50% oxygen and 16 ppm nitric oxide through the ventilator. She is still on all of her drips and we have not removed any tubes yet. The plan is to concentrate on getting her off the baby crack again - I guess everybody has a little relapse now and then - until her chest is closed. Then we can start getting rid of the chest tubes and her other support. She is progressing well as far as the swelling is concerned, but we won't know when she will get closed up for another day or two. Dr. Bleiweis should be by late this afternoon to check on her. Thanks to everyone for your prayers and support through yesterday.

Tuesday, June 29, 2010

The Day Of

I'm just going to keep editing this post for updates today. Keep checking back.

6:00 AM - Arrived at Shands. Ginny was sleeping peacefully. She got a little cranky around 3:00 am, but only because they had stopped feeding her at midnight and switched to IV fluids. She woke up around 6:30 and was fussy, but not too bad. They let us stay with her through shift change.

8:05 AM - Rode with the anesthesia team and Ginny in the elevator to the second floor, then came back to the NICU to pick up all of Ginny's stuff. The entire team in the NICU was sad to see Ginny go, but happy that she is one step closer to going home.

11:20 AM - Just received word from the hospital regarding Ginny. She went under anesthesia and onto the bypass without any problems. Dr. Bleiweis has fixed the PDA and is now beginning her correction - as Dr. Pitkin described it "the meat of the operation." Not sure about that choice of words, but American is his second language, so no worries.

2:10 PM - While visiting the Ronald McDonald House of North Central Florida, we got a call from the hospital regarding Ginny. Her correction is complete and they have begun to wean her off the heart-lung bypass machine. So far, everything is looking good. They have asked us to be available to speak to Dr. Bleiweis at 3 pm.

4:29 PM - In the Ronald McDonald Family Room on the 10th floor of Shands. We just received a call that Ginny is about to be wheeled upstairs to the PICU. Dr. Bleiweis will be coming to chat with us shortly. We were told it should be about an hour before we can see her, but we're prepared to wait two.

5:15 PM - Dr. Bleiweis came and talked to us about Ginny's surgery. She has been moved up to the PICU and they are cleaning her up and getting settled so we can see her. Her correction was a success, but she did have an episode of pulmonary hypertension that gave the team a pretty good scare. She is back on nitric oxide at a higher dose than she was before (40 ppm) but they will begin weaning her down today. She should be down to 20 ppm by late tonight. We should be allowed to see her shortly.

7:53 PM - This will be my last post of the evening. Ginny is doing well. She is on the ventilator again receiving 75% oxygen and 40 ppm nitric oxide. She has been heavily sedated, so she does not move or open her eyes. She has 13 IV pumps pushing 7 different medications and fluid nourishment. She has a chest tube, a central line, a tube to monitor her left atrial pressure, and an external pacemaker. She has a large gauze bandage in the middle of her chest covering the sterile gore-tex fabric, which in turn covers her open chest. It is not a pretty picture, so I won't be posting any more photos for a while. Depending on the speed of her recovery, a lot of the apparatus will be taken away starting in the next couple days. Surprisingly, Rachel and I are less stressed-out than we expected. We've had dinner and are going to try to just relax with Ginny for the rest of the night. She's had a difficult but productive day. We are hoping she has a quiet and uneventful night. Thank you everyone for your prayers and support. Ginny is feeling the love.

Monday, June 28, 2010

The Calm Before The Storm

Today we spent the day trying to relax with Ginny. We haven't posted many pictures so far. I decided today that I would share a couple. As you can tell by this first picture, I didn't really have a hard time relaxing with my baby girl. She slept the whole time while I got the best two hours of sleep I've had in a month - and she didn't even pee on me this time.


Rachel is doing her best to relax also. It is hard to think that in just a few hours our little girl is going to go through one of the most traumatic experiences anyone can go through - and she won't even remember it.

Dr. Bleiweis came by and discussed Ginny's surgery. At about 7:30 tomorrow morning, Ginny will be wheeled off to the operating room by the anesthesia team, and with any luck, we will be able to see her by 4 or 5 in the evening. It is a complex operation, but Dr. Bleiweis is one of the best - if not the best - cardio-thoracic surgeons in the country. The length of the operation will really be determined by how complicated it is to re-arrange her coronary arteries - and they won't know that until they actually get inside her chest. Pray that it is simple.

We're trying to get all the snuggle time we can tonight. It will seem like forever before we can hold her again. I held her most of the afternoon, so Rachel is getting the evening. As the time passes, it is hard not to start thinking about how difficult tomorrow will be. We've done everything we can for her, and now it is out of our hands.

We've learned a lot about ourselves over the last month. One thing that we knew, but have continued to re-learn is our sense of humor. I think Ginny's in on that, too. Shortly after I took this last picture, the three of us started to have a little "moment". Rachel and I started to cry a little, anticipating the stress of tomorrow's storm. Ginny provided her own thunder with the loudest diaper-filling you have ever heard. We couldn't help but start laughing. It just goes to show you - it doesn't matter what the occasion - poop jokes are always funny.

"You're just like your father." - Rachel

Sunday, June 27, 2010

The View From Base Camp

During my almost 8 years in the Army I attended - and graduated from - the Sapper Leader Course. Sapper school is not the toughest thing the Army can do to you, but it’s pretty damn tough. There, high stress, sleep deprivation, hunger, and extreme physical exertion are the normal states of being. I won’t go through the whole thing - Google it or just watch the Military Channel. My point is, when I finished Sapper school, I thought I was pretty tough. Having never served in combat, it is probably the toughest thing I have ever done. The last month has been pretty stressful and - in some respects - I think it rivals my experience in Sapper school.

We spend most of each day at the hospital. We arrive sometime between 8 and 9 each morning, and we leave sometime between 6 and 10 each night. Although we are lucky in the fact that we sleep in our own bed each night, the sleep is not as restful as I wish it was. This adds a little to the stress.

From after the first week or so – when the roller coaster ride leveled out a bit – up until the time Ginny came off the ventilator, our days were filled with incremental improvements. Each day Ginny got a little bit better and there was something to aim for. Over the last week or so, we’ve been able to hold her and take a more active role in her care. She has been awake and alert and has even started to show a little bit of her feisty personality. That has been great. We’ve been trying to get her to breastfeed, though not yet successfully. Unfortunately, the wild stress of the roller coaster ride has been replaced by the quiet stress of anticipation.

Tomorrow will be our last day with Ginny before her surgery. We plan to spend most of it with her while she is alert. Early Tuesday morning – probably around 7 o’clock - she will be transferred from the NICU to the surgery floor. They will begin her day by getting the anesthesia going – including a paralytic – intubating her and getting her hooked up to a ventilator again. The surgery will start by opening her chest at the sternum and then hooking her to a heart-lung bypass machine. The surgeon will then correct her transposed arteries. It sounds simple enough, but he will have to disconnect (read: cut) her aorta and pulmonary artery, switch them around and stitch them back together in the correct positions. While they are in there, they will close her duct (PDA) and repair the hole between her atria (ASD).

The surgery itself will take around 8 hours. Rachel and I do not plan on spending that time in the waiting room. We are going to get away from the hospital, get some breakfast, see a movie – something other than sit and wait. The surgical team will have our cell number and we won’t be too far away from the hospital.

Ginny will go from the operating room to the Pediatric Intensive Care Unit (PICU) after her surgery. Although the correction will be complete, her chest will remain open for 3 to 5 days. She will have a gore-tex patch and a sterile dressing, as well as several tubes and lines into her chest. The lines are there to administer medications and measure the pressures in the chambers of her heart and great vessels. I’m told they keep the chest open to eliminate the need to re-open in case of complications and to avoid complications from swelling or fluid around the heart. As she starts to recover, the lines and tubes will be removed.

Once the swelling has gone down and the surgeons are ready, they will close her chest right there in the PICU. Until that happens, we’re going to limit her contact with people other than Rachel and me, and we’re going to limit our contact with other people. We’re trying to reduce her risk of infection - so, if you’re in Gainesville, please don’t be offended if we don’t invite you in.

Ginny will stay on the ventilator for about a week after her chest is closed. She’ll remain sedated to some degree until then, so we probably won’t see her very much with her eyes open for a couple weeks after tomorrow. After she comes off the ventilator, her big challenge will be learning to feed.

As you can see – even though we’ve come a long way in a month – we still have a long way to go before we can bring our beautiful girl home. We’re guessing it will be somewhere close to another month before that will happen. We couldn’t have made it this far without all of the loving support and prayers of our friends and families. Please keep praying as we head into this new phase of Ginny’s treatment. We’ve made it to Base Camp, now we’ve got to make an attempt at the summit.

Friday, June 25, 2010

Quick Update III

Ginny has had a good day. We are about to make our second attempt at breastfeeding today. This morning she might have been too tired to work for her food, but she's been sleeping all day. We'll see how this one goes. Her feeds have been increased again to 90 cc every three hours. She's a big kid. She was also taken off the CPAP and is now exclusively on the comfort flow. We've been told several times that the surgery is tentatively scheduled for Tuesday. We were supposed to have a confirmation today, but that has not happened yet.

Thursday, June 24, 2010

The Science of Hope

If you’ve ever watched a University of Florida football game on TV, you’ve probably seen a commercial for UF & Shands. They use the tag line “UF & Shands - The Science of Hope.” I used to think that just a line dreamed up by the UF administration’s marketing consultant to impress the editors of US News & World Report when it came time for the annual hospital rankings. I don’t think that anymore. In an earlier post, I mentioned Ginny’s neighbor from Baton Rouge, Louisiana. Baby Joseph and his parents Max and Deborah have changed my mind. They’ve asked me to share his story with you.

Max is 34 years old and Deborah is 27. They live just outside Baton Rouge, Louisiana and both are big LSU Tiger fans. She is a first grade teacher, and he is mechanical drafter in the petrochemical industry. They had been married just over a year and were having trouble conceiving a child, so they went to a fertility specialist. The specialist did not give them much chance of conceiving on their first try, but in September they were happy to learn they were pregnant.

In January, they went for their 20 week ultrasound to find out if their bundle of joy would be a boy or a girl. During the ultrasound the doctor kept looking at one particular area of the baby. He didn’t say anything. “Is it a boy or a girl,” they finally asked. “A boy,” the doctor replied, “but there is a problem.” They found that Joseph had a condition called Congenital Diaphragmatic Hernia (CDH). CDH is a life threatening birth defect where the diaphragm does not completely form, allowing some of the contents of the abdomen to protrude into the chest and hinder the normal growth of lung tissue. CDH affects about 1 in 3000 babies, and the national survival rate for babies born with CDH is between 50% and 65%. (www.realhopeforcdh.com)

The doctor encouraged them to “consider your options. You are only 20 weeks.” They understood that he was telling them to have an abortion. For them, that was not an option. The next day they traveled to another specialist at a university hospital in New Orleans. He gave the same prognosis. They were not given much hope. The only way their baby would survive is if he was born at a hospital with a CDH center. They were told even then he didn’t have much chance.

Max and Deborah immediately began researching hospitals with CDH centers. There are only five centers in the country that handle these kinds of cases. They first visited the University of Florida and Shands Hospital. Deborah underwent a battery of tests and then met with Dr. David Kays. Dr. Kays is an Associate Professor and Chief of Pediatric Surgery and arguably the best doctor in the country for the treatment of CDH. He met with them and explained is approach to treatment and gave them an 80 to 90% chance that Joseph would survive. Finally someone had given them a reason to be hopeful.

They also traveled to a children’s hospital in Philadelphia. The doctors there gave them a best-case chance of survival of 40% and were not very encouraging. Their decision had been made for them. Joseph would be born at Shands.

At 27 weeks, Deborah was diagnosed with polyhydraminosis – a condition where her body created too much amniotic fluid. By 33 weeks, her body had created over a gallon of excess fluid. The extra fluid could send her into pre-term labor and had to be removed by a procedure called amnio-reduction. Because of the risk of pre-term labor, and because Joseph’s chances of survival were greatly diminished if he was born before 39 weeks, Deborah and Max moved to Gainesville for the last 5 weeks of their pregnancy. During that 5 week period, Deborah experienced almost constant contractions and pain, and they made 7 or 8 trips to the emergency room thinking she was in active labor.

Joseph was delivered by Caesarian section on June 1st at 9:05 a.m. He weighed 7 pounds, 14 ounces, and was 20 ½ inches long. Immediately after his birth he was placed on the ventilator and brought to the NICU. He moved into the bed space right next to Ginny. Deborah and Max weren’t able to see him until 4:30 that afternoon.

The first time you see your baby in a NICU crib - with the wires and IV’s and ventilator tubes, and the constant beeping from monitors and IV pumps – a wave of emotion crashes over you, almost to the point of physically knocking you to your knees. It is not how you envisioned meeting your child, and the feelings border on devastation. We were there when Joseph finally got to meet his parents, and it was no different for them. It is an experience I wish happened less frequently, but we have seen it several times over the last month.

On June 4th – when Joseph was just 3 days old – Dr. Kays and his team performed surgery to repair Joseph’s hernia. His diaphragm was repaired using a gore-tex fabric. Then his digestive tract had to be reconstructed – including rearranging his stomach, liver, intestines, and spleen into something resembling their normal positions. To me that sounds hard enough on a full grown man, but they did it on a 7 pound boy.

Joseph has been recovering well. On June 12th he was taken off of the ventilator and he has been moved from NICU 3 to NICU 2 – a good sign. He is feeding and should be well enough to leave the hospital in just a couple weeks. Deborah and Max have become friends of ours through our shared experience in the NICU. Ginny and Joseph are planning play-dates that coincide with the LSU vs. Florida football weekend. During that game, we won’t be so cynical about the commercials for UF & Shands.

Waiting Game

Ginny is doing really well. We have talked to the surgical team a couple of times in the last few days and the plan remains for Ginny to have her surgery on Tuesday the 29th. Until then, we are just chillin'. Ginny is still alternating between the CPAP and a different device called Comfort Flow. It is similar to the nasal cannula, but it gives her a little more pressure support. We've changed the schedule so that now she is alternating every six hours instead of every four. She is learning to breastfeed, although reluctantly. Small steps, but all in the right direction.

Tuesday, June 22, 2010

Take II

Today Ginny is back to doing sprints. She's had a good day today. We're going to try to put her on just the nasal cannula tomorrow morning sometime. We're also going to focus our attention on breasts - and we will try to feed Ginny, too. It's going to be a long day for both of us, but I think I might enjoy it more than she will.

Monday, June 21, 2010

The Grind

Today was another "sideways day". During rounds this morning the plan was for Ginny to come off the CPAP and go with just the nasal cannula. She had other plans. Rachel had held her for a little while and then went out to the waiting room for something. When she put Ginny back in the crib, she was pretty fussy. I decided I would hold her to try to console her for a little while. It didn't console her much. Her sats dropped to the high 60's or so and she got a little rash on her chest. We put her back in the crib and started her back on the CPAP. We changed her diaper and her bedding, and after a short while, her sats were back in the 90's. We're not exactly sure what that was all about, but one theory is that she is allergic to my laundry detergent. I guess I'll stop doing laundry. She spend the rest of the day a little fussy, but otherwise great.

The surgeon came by in the afternoon and told us that he has tentatively scheduled Ginny's surgery for Tuesday (6/29). Very good news, but keep in mind we said tentatively. I don't think she has to come all the way off the CPAP, but that would be good. She also has to stay infection-free, and it would be really good for her if she could learn how to feed. Like everything else associated with parenting, it's a marathon, not a sprint.

Sunday, June 20, 2010

Why?

The first few days of Ginny’s life were unlike anything I had experienced in my life. The word surreal seems a bit cliché, but I cannot think of another way to describe it. When I entered the operating room for Rachel’s C-section, it was as if I was watching a movie of someone else’s life. This wasn’t actually happening to us.

When we saw Ginny having trouble in the first few minutes of her life, I could see the worry in Rachel’s eyes. We knew something was wrong, we just didn’t know what. I remember looking at her as tears began to run down her face and telling her, “It’s out of our hands now. She will be OK.” We had no idea what was going on, but I knew that everyone around us was doing everything they could to help her.

Alone in the waiting room at Shands, time seemed to stand still. There was no one else in the room, the television was off and it felt like even the clerks behind the desk had disappeared. I was alone with my thoughts. I kept thinking about how I would break the news to Rachel if Ginny didn’t make it. I couldn’t tell her on the phone. I would have to get someone to drive me back across town to NFRMC to tell her in person and leave Ginny alone at Shands.

The doctors would come out to the waiting room periodically to give me updates on Ginny’s status. At one point, they told me that Ginny would have to have a treatment called extracorporeal membrane oxygenation (ECMO). ECMO is a high-risk treatment and the doctors tried (successfully) everything they could to avoid it. As they explained to me her problems and the appropriate treatments - that night and over the following days - I felt a sense of serenity. Discussing the technical medical issues put me in a little more comfortable place, though to them I’m sure I looked anything but comfortable or serene.

Rachel and I have asked a lot of questions in the weeks since then – questions about anatomy and physiology and about the treatments for and characteristics of her conditions. The one question I have not asked is “Why?” I don’t mean “why” in the sense of “What are the medical causes of Ginny’s sickness?” I don’t mean, “Why didn’t we know about this before?” Those kinds of questions are normal and need to be asked. I mean “Why us? Why - when we took such good care during pregnancy - is Ginny so sick?”

Rachel had a textbook pregnancy. She had great prenatal care. She took good care of herself. She didn’t drink, smoke, or do anything to endanger Ginny’s health. Still, Ginny is sick. Asking why won’t make her better. Asking will only lead us to feeling sorry for ourselves. There really is no answer to “Why?” Ginny doesn’t need parents who feel sorry for themselves. She needs parents that are willing to put their feelings aside and do what needs to be done to make her better. We’re trying our best to be those parents.

Yesterday was a good day for Ginny. Today was also. She is still doing sprints – alternating between the CPAP and nasal cannula. She tried again today to breastfeed and is getting closer to a latch each time. Despite all she has been through, she is not really a fussy baby. She cries when she’s moved or when you change her diaper or when she’s hungry - almost normal baby stuff. The surgeon stopped by and was very happy with her progress. He told us he was hoping for surgery early next week and he would have a date for us some time tomorrow.

Yesterday was not, however, a good day for Ginny’s parents. Late in the afternoon, we were brought face to face with the reality that not every baby in the NICU will make it home for a full recovery. Some babies are just born too soon and too small to survive. As I tried to deal with what was happening around me, the question “Why?” came and kicked me squarely in the gut. Why do I get to take my baby home, while another dad doesn’t? Unfortunately, that question doesn’t have an answer either.

Please keep all of the NICU families in your prayers tonight.

Saturday, June 19, 2010

Sometimes Boring Days Are Good

Ginny is doing great. She's eating and crying and filling diapers - all the things that babies should do. She had lots of visitors today, and she held up well through all of them. She's still doing sprints - four hours on the CPAP and four hours on the nasal cannula - and doesn't seem to notice the difference. Let's all hope she keeps this up through next week.

Friday, June 18, 2010

On Holiday

Ginny is into her third day off of the ventilator. She likes it just fine. She is still officially on the CPAP, but she's doing what Dr. Baines calls "sprints." She was taken off the CPAP at 3:00 this afternoon and is getting oxygen through nasal cannula. She'll be off the CPAP for a few hours and then we'll put her back on for a while. We just want to see how she tolerates it. So far she's doing great. After some time we'll know if she can stay off the CPAP and just use the cannula for extra oxygen. She even tried to breastfeed a little. She got a few drops of mamma's milk and then fell right asleep and started drooling. Jagermeister does the same thing to me. She didn't actually latch on, but she'll get the hang of it eventually.

So Ginny will stay on her ventilator holiday for a few days - most likely all of next week - until the surgeons feel like she is well enough to have her correction. We really feel like we've come such a long way. We have, really, but Ginny still has a pretty big obstacle to overcome. We'll enjoy her progress for the next week and hope we can stave off any infections that might put her at risk during surgery. Then we'll face the next challenge.

Thursday, June 17, 2010

Quick Update II

Cardiology stopped by late in the afternoon to check Ginny's chart. He mentioned that surgery might not be until the week after next, but the real call would be up to the surgeon. Ginny had a good day. She is still on the CPAP with 30% oxygen, but loving it with 90% (+/-) saturations. Rachel held her all morning and I held her most of the afternoon. Tonight around 9:00 she went for a routine pre-surgery cranial MRI. We should hear about the results tomorrow. Thank you everyone for your thoughts and prayers. We're (almost) half way home.

Dirty Tricks

A few days after we got here to the NICU, another family moved in next door. They are from just outside Baton Rouge, Louisiana, but they are here because Shands is the best hospital for their baby's particular condition. We've become pretty good friends with them. You have probably guessed that they are die-hard LSU fans stuck in Gator country. We joke with them constantly, but they are good sports and really great people.

Last night Ginny decided she wanted to play her first practical joke. The other baby has a little Noah's Ark mobile that plays a lullaby, while Ginny has a Florida Gators mobile that plays our fight song. Ginny wanted us to replace a little giraffe that looks like this:
with a Gator that looks like this:

This morning when we came in, it was carnage. This is what we found:

That's OK... let's just wait until October 9th. Then we'll see... Ginny can't wait for football season.

Wednesday, June 16, 2010

A Great Day

Ginny is 20 days old today. That's almost 3 weeks that she had a tube down her throat to help her breathe. The doctors removed her tube today. She still has a device on her nose called a CPAP (Continuous Positive Airway Pressure) that gives her a mix of air with 30% oxygen, but no tube. After letting her rest a bit and checking her blood gases, Rachel and I got to hold her for the first time in her life.

I'd like to be able to give you some eloquent description of what that was like, but I can't. There just aren't words for it. If you've experienced it with your own children, you know what I'm talking about. If you haven't, I could write 100,000 words about it and you still would not be able to comprehend.

Rachel held Ginny for about 30 minutes before I got to hold her. Our good friend and wedding photographer Gregg came to the hospital and was allowed to photograph us holding her for the first time. I think the first thing I said to her when I got her in my arms was, "I love you, Ginny," followed quickly by "Dammit kid, you scared the crap out of us!" I held her for about 30 minutes and I don't think I took my eyes off of her the whole time. I've handed her back to Rachel, and they're both as happy as can be.

Ginny will not be able to breastfeed while she is on the CPAP. She should only be on it for about 24 hours until the switch her to the cannula (nose tubes) for oxygen. I think then she will able to go straight to the tap. Tomorrow I expect cardiology to come by and check on her. Hopefully then they will be able to give us a firm date for surgery. In the meantime, we're just enjoying Ginny.

I'm sure Gregg will be posting some pictures at some point in the near future. If you'd like to see them, go to Angel & Gregg's website: www.photography35.com Angel & Gregg photographed our wedding and have become really good friends. If you have a day that you would like to preserve in photographs forever, call them. They are great people and really good photographers. Even if they are Yankees fans.

Tuesday, June 15, 2010

Ventilators and Vacuum Pumps

The most common reaction I received from friends, family, and coworkers to the news that I would be a dad was "Your life will never be the same." Intuitively we knew this. Our lives as we knew them wouldn't come to an end, they would just require a little more planning, and of course we expected with time our priorities would change. Obviously there would be no more spontaneous road trips or wild benders during football season. We were OK with this. You have to grow up sometime - I guess - no matter how reluctantly. Don't get me wrong - I'm incredibly happy to be a dad. There are just some changes that will take some getting used to. It's not the obvious changes either. They kind of sneak up on you.

This morning one of those changes smacked me in the face as I tried to straighten up our kitchen. The kitchen is one of my favorite places in our house, after the library / office. Cooking is one of my hobbies, and we like to have big groups of friends over for dinner - though sadly that is getting less frequent as more of our friends move away from Gainesville. It is fair to say that Rachel and I have a little bit of a gender role reversal when it comes to the kitchen. On several occasions I have found myself standing in the kitchen cooking dinner only to look out the window and see Rachel hard at work on some project or another with my power tools. It's not for everybody, but it works for us.

So as I stood there this morning organizing the clutter that has accumulated on the counter from days at the hospital and nights of just crashing, I realized what has become of my kitchen. It is now a room dedicated almost exclusively to the pumping of breasts. There are large bags of serving-sized milk bottles, boxes of freezer storage bags, and little test strips so Rachel can check the milk for alcohol - we don't need Ginny sucking down White Russians just yet. The freezer is so full of 5 oz bags of breastmilk that there isn't room for much else. The dairy jokes that were so funny a month ago seem to have lost something with Rachel, too.

I feel bad for Rachel because what should be a special bonding moment with Ginny has turned into something quite detached and mechanical. Her life for the moment revolves around pumping. I'm sure she would be much happier using a power tool other than a vacuum pump. Which leads us to the good news.

While we don't have a date for surgery just yet, the neonatology team did their rounds this morning and are very pleased with our little princess. While we have increased her sildenafil just a bit, she is doing great. She is way down on her ventilator settings and the plan is to take her off the ventilator and remove her tube some time tomorrow. This is wonderful news. We should finally get to hold her tomorrow afternoon, barring another one of her tantrums. Pray that she doesn't throw a fit about having to actually breathe on her own, or the tube will have to go right back in.

I'm trying not to think too much about what the experience of holding her will be like because I'd like it to just happen. Needless to say, the anticipation is killing me.

Monday, June 14, 2010

Monday Mornings

The neonatology doctors have completed their rounds this morning. Everyone is very pleased with Miss Ginny. She has been off the nitric oxide since Friday night at about 9. She has not looked back since then. She has been weened back a little bit on her Versed (sedative) and she is receiving 32% oxygen through the ventilator. (She only has to go to 21% before she's breathing room air.) Right now she is just about able to be extubated, though we are waiting on cardiology to make a decision about removing the tube. We expect they will be around sometime today to fill us in on the plan.

We are about at the mid-way point for this particular crisis. We've had more than a few really scary moments along the way. Right now is a little lull in the excitement, but another roller coaster ride is coming up. Although they've been doing this surgery on babies for decades, the thought of letting them open up my daughter's chest to rearrange the plumbing is a bit scary to say the least. We are comforted by the fact that we have one of the best pediatric cardio-thorasic surgeons in the country doing the work. Cincinnati Children's Hospital has a great graphic that shows what he will have to do to fix Ginny's heart. You can find it at:
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/graphicsummaries/transwf.htm

It is pretty awesome to think that they will perform that surgery on a heart that is only about 3 cm in diameter - just a little over an inch - absolutely amazing!

Sunday, June 13, 2010

Back on Track

Congratulations Andre and Megan! As I said in my toast, we hope you have a long, happy, and prosperous life together.

We made it back to Gainesville from St. Pete Beach at around 1:15 this morning and went straight to the hospital. We found Ginny asleep, with oxygen saturations in the 90 percent range, without any nitric oxide. She is such a beautiful child. Unlike her mom and dad, she decided to do something productive while her parents were out of town.

We are dragging ourselves out of bed and down to the hospital to spend the day with Ginny. In the next couple of days we should know something about when her surgery will be, but we're guessing no sooner than the end of the week or early next week. We've cleared a big hurdle. Thank you all for your prayers and support. The next hurdle will be surgery, and then I'll have to start changing her diapers on my own. Somehow I don't think that hurdle will be too bad.

Friday, June 11, 2010

Wedding Weekend

Our good friend Andre is getting married this weekend. We thought we had everything all planned out as far as that was concerned. We were going to bring Ginny to St. Petersburg Beach and she was going to hang out with Grammie and Grandpa while I was giving a heartwarming toast to Andre and his beautiful bride Megan as Rachel sat smiling in admiration next to me. Then we would enjoy a weekend at the beach to relax with the little bundle of joy.

Life doesn't always work out the way you plan it.

We are going to make it to Andre's wedding and help him celebrate the best day of his life thus far. (Andre - You'll probably have at least one more day that is just as awesome. Trust me.) We'll go straight from the hospital to the rehearsal, wedding tomorrow, and straight home after the reception. Ginny is stable and in great hands, and we could use a few hours away from the hospital. Hopefully while we're gone she can work on kicking the nitric habit.

Of course, knowing her gene pool, she'll probably throw a party in the NICU while her parents are out of town.

Thursday, June 10, 2010

She's a Pretty Big Deal

Ginny has had quite an afternoon. Her first celebrity visitor was Storm Roberts, a local radio personality from WKTK. Storm did a quick interview with us for the August fundraiser for Children's Miracle Network. Over the years Storm has raised millions of dollars for CMN and we hope this year is no different.

After the quick interview Rachel and I went back to the family lunch sponsored by the March of Dimes. There are more families now, as we've had quite a few babies move into the NICU over the last week.

About 3 o'clock we had our most exciting visitors. It started with a camera crew from Cox Communications escorted by the March of Dimes folks. Then came Gator Gymnastics Head Coach Rhonda Faehn and Assistant Men's Tennis Coach Jeremy Bayon. They shot a TV spot to promote the UF March for Babies coming up in November. They also recorded a "Let the Gator Growl!"

For those of you that aren't part of the Gator Nation, Gator Growl is the world's largest student-run pep rally that happens at homecoming each year. About 30,000 students, families, and alumni attend. There is usually a musical act and a comedian, along with the athletic teams and student performances. We've had Bill Cosby, Bob Hope, Robin Williams, and a lot of other big names perform at Gator Growl. The show opens with a recording of different celebrities proclaiming "Let the Gator Growl!" They've included presidential candidates, supreme court justices, actors, comedians, authors, distinguished alumni, and all kinds of celebrities - local and national. This year that list will include none other than our Ginny Lee. We're pretty excited about that, but the most important part of all that is raising money to help March of Dimes.

Now, I said those were the exciting visitors. The important visitors came right after the camera crew left. Dr. Fricker (cardiology), Dr. Baines (neonatology), and Dr. Maya (cardiology fellow) - the real rock stars - came down to discuss the plans to get Ginny to surgery. We were very encouraged by the news, even though it wasn't exactly what we expected. We're going to try to ween her off the nitric oxide again tomorrow. If she tolerates it, that's great. If not, we'll just keep trying about every 48 hours until she can. It might take a while, but she's going to be fine. Good thing, because she's a pretty big deal.

Wednesday, June 9, 2010

Kicking the Habit

Ginny's condition hasn't changed much from yesterday. Today was a kind of "sideways day." After the roller coaster of the first few days, she's been improving by varying degrees each day, but always improving. We had gotten used to that gradual degree of improvement. Today, she didn't really improve, but she didn't really get worse either. Although we're happy that she is getting better and always optimistic, when we're in the moment we get a little discouraged that we didn't see any improvement today.

The staff in NICU 3 are getting a kick out of Rachel's "baby crack" analogy. Overnight we tried unsuccessfully again to ween Ginny off the stuff. We brought her back up to 5 ppm, and increased her dosage of sildenafil as well. Her response was mixed. Her oxygen saturation will do great for most of the day, but she has moments where they will drop into the 60's. We'll try again tomorrow to bring her off the nitric oxide and see what happens. Getting over that last little hump will be tough, so keep praying.

In addition to weening Ginny off the nitric, we've got a pretty big day tomorrow. Some of the coaches from the University of Florida athletic department will be coming to the NICU to take some pictures with Ginny for the March of Dimes. Ginny is going to be on a poster for their fundraising drive coming up. I'm not sure exactly who the coaches are or when the poster will be released, but I'll let you know. We'll also be recording an interview for the Children's Miracle Network fundraising drive coming up on the local Gainesville radio station.

Despite how stressful and emotionally draining this experience has been so far, Rachel and I have not lost sight of how blessed we really are. We've got good jobs at a company that has shown a great amount of support for us and provides us with an excellent benefits package. Without those benefits, I'm not sure we would be keeping our sanity as well as we are. We've also got great families and great friends. So many people have given blood, brought us lunch or dinner, done our laundry, mowed our yard, and most importantly, kept us in prayer. Not every family with a child in the NICU is that blessed.

While Rachel and I are focused on Ginny's recovery, it is impossible for us to ignore the need of those around us. A lot of you have asked how you might be able to help. We are exploring the idea of creating some kind of charitable foundation to help other NICU families. Until we get that figured out, if you would like to give we would highly recommend the March of Dimes and Children's Miracle Network. Both of these organizations have been very supportive, though in different ways. We would also recommend the Ronald McDonald House of Gainesville.

Thank you everyone for your thoughts and prayers, and thank you Kat and Bill for dinner. If you are in Gainesville, please visit The Red Onion Neighborhood Grill. It's a local business run by wonderful people. The food is good and the beer is cold. And man did I need that beer.

Tuesday, June 8, 2010

Bumps in the Road

I've used the metaphor that Ginny's recovery will be a long road. Along that road we'll have some bumps, and today was one of those little bumps. Ginny has improved a lot over the last week. She is stable and has shown us how she can be so resilient and so stubborn at the same time.

Ginny's been weened off of all but 3 medications - which she will stay on until after her surgery. The same goes for the 35% oxygen she is receiving from the ventilator. She could be receiving that oxygen without having a tube down her throat if she could just kick the nitric habit. She has been getting nitric oxide through her ventilator at 1 ppm since early late Sunday. We tried to get her all the way off the nitric yesterday evening, but she wasn't having any of that. We tried again tonight and were also unsuccessful. The respiratory techs say that going from 1 ppm to none is the hardest step. Rachel calls it baby crack. We will try again tomorrow to get her off the stuff. We've also increased her feedings to 20 cc every 3 hours. She's even gained a little weight.

Kicking the nitric habit will be a big step for her. Her pulmonary hypertension is largely under control. If we can get Ginny off the nitric, she will be able to come off the ventilator (extubated). We'll then be able to hold her and Rachel will be able to breastfeed her. After about a week of that kind of rest and relaxation, she should be ready for surgery. It all depends on getting her off the nitric oxide. If there is something you want to pray about, pray she can just say no to the NO.

We would like to give a huge thank you to everyone at Jones Edmunds that donated their vacation time so that I can spend this time with Ginny. At last count my co-workers had donated over 250 hours of vacation time to me. I am eternally grateful and can only hope that someday I will be able to pay it all back. I do hope to get back to the office soon - mostly because that will mean that Ginny is well on her way to a normal kid's life - but also because I'm afraid the atmosphere in "the shoe" has become all too pleasant in my absence.

Monday, June 7, 2010

Making Strides

We are almost to the end of another good day. Ginny has been weened down on or off almost all of her medications. Her feeding has been increased to 6 cc every 3 hours. Her oxygen saturations are consistently above 80%. The ventilator is supplying her with 35% oxygen and only 4 ppm of nitric oxide. Cardiology would like her to stay at 35% Oxygen until her surgery, but they could extubate her before the surgery if she can tolerate being off of the nitric oxide. If not, they may extubate her, give her the oxygen through two small tubes in her nose, and replace the nitric with sildenafil to keep her pulmonary blood vessels dilated. In case you don't have your Physician's Desk Reference close by, the brand name of that drug is Viagra....

Normally this is where I would insert completely inappropriate humor. I'll refrain, but only a little bit. The good news is that if her breathing lasts for more than four hours, we won't need to seek medical attention.

Yesterday I got to change my first diaper. I'm a Civil Engineer. I've been to dozens of wastewater treatment plants, responded to sewer line breaks, and seen my share of gross stuff. I have never seen a turd like that before in my life.

Our whole parenting experience has been very stressful thus far. Despite all the stress, we've really had very little to complain about. Today was probably the first time I went on one of my somewhat infamous rants. (The ABG returns.) Here at Shands, they have some of the most intelligent and talented people in the world working in the building. The important part is in the building. Across the street in the parking garage, not so much.

It seems that since Rachel and I were both students at UF at one time and actually possessed a parking pass, our license plate is forever listed in the Parking Services database as a student vehicle. We got a parking ticket on Friday for parking in a restricted area. "This area is for medical visitors only," the ticket read, along with the fine of $30. Today I assisted the Parking Services people by putting a large sign in the window that read: "MEDICAL VISITOR: My child is a patient in the NICU 3." Despite this helpful assistance, I got another ticket today. Of course, the note on the front seat instructing Parking Services to perform a physical impossibility probably did not win me any friends.

The conversation on the phone was considerably less than productive, but we'll get it all straightened out eventually. If this is the worst thing that happens when we're here, I won't complain one bit.

Sunday, June 6, 2010

Quick Update

We're home from the hospital pretty early tonight. We managed to avoid the shift-change meltdown, so we think we've got this kid figured out (at least until she's a teenager). A very good day.

I hope I didn't overstep my credibility with the "my kid as a metaphor for world peace," but we really have a lot of amazing friends and family, and we just want to share that with everyone. We still have a long road ahead of us, so please keep Ginny in your thoughts and prayers.

Saturday, June 5, 2010

Ginny's Dream Today

Ginny is doing great this morning. She doesn't really like the night shift though. Last night, shortly after shift change, she threw another one of her tantrums, dropped her sats and just made everyone worry. After that she was fine. We did get a call shortly after midnight from Dr. Molly that Ginny had a slight fever. They started her on some antibiotics just in case and took a few cultures. She had another big day yesterday, so it could just be all the excitement combined with the PGE (it has a tendency to raise body temperature).

Yesterday the nurses put in a peripherally inserted central catheter (PIC line) - an IV in her arm that goes through the vein almost all the way to her heart. This will help get medications to her body quicker and it won't go bad like regular IV's do. It will save her a lot of sticks from needles over the next week or so. It also enabled Dr. Molly to remove her umbilical catheter (UVC). She has been taking mama's milk at 1 cc every 3 hours, so hopefully she'll start packing on the pounds. They weened a lot of her medications yesterday, and then again this morning. We're making great progress.

Rachel and I have been doing our best to keep track of all of the people that help us through this difficult time. It's tough because a lot of you are anonymous - some on purpose, like the phantom lawn-mowing guy. It will be impossible for us to know everyone who has helped, but we have kept the names of those that we know about. Regardless of whether we know your name or not, we thank you for all you have done and hope you will continue to keep us in your prayers.

We keep track of the names we know in a little notebook. I noticed something about them the other day. They are all different kinds of people. There are Christians, Jews, Muslims, and Buddhists. There are white people, black people, brown, red, and yellow people. There are gay people and straight people. One of her doctors is an Indian man, and another a Filipino woman. I know Remi Bald Eagle is out there saying a prayer for her. He's an original American and an American hero too. We’re all really different, but at a time like this, the differences don’t really seem to matter. In a lot of places in the world right now people are focused on the differences and forget that we all want the same things. We all want our kids to grow up happy and healthy, to get a good education and be productive members of society, and to help their neighbors when they’re in need. We’re really not that different after all. I hope Ginny grows up in a world where she’s judged by the content of her character - and nothing else. She’ll see the great example that all of you have set for her.

Saturday Morning With Daddy

I'm really not kidding about the roller coaster. Yesterday was a good day for Ginny, but last night around the time that the nurses change shifts (7 pm), Ginny needed to be suctioned from the secretions in her lungs. As I've said before, she really doesn't like this. Her sats dropped and she had trouble getting them back up. She was weened off some of her sedatives earlier in the day, so she was a little more awake. Rachel saw her open her eyes several times, but I didn't see it until almost midnight. Sadly when I did see her open her eyes, she was saying "Help me,Daddy". The nurses and respiratory techs had trouble suctioning her, but they finally got three pretty substantial plugs to work themselves free. The pediatric Fellow described them as "really big goobers." Apparently that is an actual medical term.

When we went back to the house a little after midnight, Jenny and Matt Z were there with my sister Alissa. It was good to see them all. Jenny is a nervous-cleaner. When she gets anxiety, she cleans. Luckily she got her anxiety at my house. Thanks Jenny, you rock!

We came in this morning with quite a bit of apprehension about what we would find when we got here. Luckily, our kick-ass nurse Jen was here and Ginny's numbers were excellent. She had suctioned Ginny just an hour before we got here and Ginny had recovered nicely. Just a few minutes after Auntie Alissa got to meet Ginny, Dr. Fricker came by and gave us some good news. He liked the way Ginny was progressing and decided to start weening her off the PGE, which is the main culprit when it comes to her lung secretions. Great news.

This morning I finally got to see Ginny open her eyes and look at me with something other than fear in her eyes. She's trying to figure out what's going on and why all these contraptions are hooked to her. She has beautiful dark eyes. It was a feeling like no other. I think Saturdays are going to be daddy days from now on.

Thank you all for your loving support and prayers.

Friday, June 4, 2010

Short Progress Report

Ginny had a pretty good day. She is back to 15 ppm of nitric oxide and 60% oxygen from the vent. She is doing a good job of trying to breathe on her own. They have reduced the dosages of some of her medications and are talking about weening her down on the others over the next day or so. The great news is that she did have two feedings of breast milk today. Ginny's recovery is going to be a long process, so I guess we will have a lot of days like this. As I said before, she has a knack for following her good days with pretty scary ones, so let's pray that we've turned the corner. Thank you all for your prayers and support.

Roller Coaster Rides

Ginny is doing well this morning. She is 8 days old today and has already developed quite the talent for scaring the crap out of her parents, as well as some very talented doctors.

Yesterday the team discussed whether or not we should perform the septostomy that afternoon, or wait until Monday. After consultation with Dr. Fricker - one of the best pediatric cardiologists in the country - we decided that Thursday was the day. Ginny caught wind of this plan and decided she would make it a little more interesting.

Cardiology had two other procedures to do before they could get to Ginny, so we knew it would be late afternoon. About 2 o'clock Ginny decided to spring her plot. Her oxygen saturations took a dive and she turned blue. The doctors and nurses immediately started working to get her sats back up. They took the ventilator off temporarily and were using the bag to breathe for her and cranked her oxygen up to 99%. She gave them a run for their money. Although Dr. Baines remained calm and professional on the outside, and the entire team did a great job, by the time her sats came back up everyone was clearly rattled.

We really didn't have much time to recover from that scare when the cardiology team showed up to do the septostomy, with the anesthesia team close behind. They explained the procedure. They would insert a line in Ginny's femoral artery and run it up to her heart using echocardiography to guide the way. Once at her heart they would inflate the balloon at the end of the line and use it to enlarge the ASD. They thought her ASD was about 7 mm, and they wanted it to be a little bigger than 1 cm. Making that hole bigger will allow more mixing of oxygenated and unoxygenated blood within her heart.

So far as we can tell this morning it has really helped. Her oxygen saturations have remained high even as we have weened her down to 60% oxygen through the vent. Her color is much better. Her hands and feet still have a little purple, but mostly she is a beautiful shade of pink.

Wednesday was such a good day, and yesterday was very stressful. It really is like a roller coaster ride with the ups and downs. It's not like one of those new high-tech roller coasters, either, with their fresh paint and safety features. It's more like the rickety old wooden coasters with bolts loose and a clanging chain and a rusty piece of metal for a seat restraint. Kind of makes you question your own sanity while you're on it, but its worth the ride.