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:

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.