Crying: Now in Stereo!

Just a quick post this evening... well, this morning actually. We arrived home from the hospital with Evie last Monday night around 8:30PM, and had a pretty good night (sleeping through most of it). I stayed home on Tuesday to be home for the twins first full day together and it went great, except that sometimes the twins cry in stereo now. Evie has spit up a few times resulting in full outfit changes twice, but has been eating well. We were able to give her a bath (which she hated) and file her nails (which she liked).

Tonight (Tuesday night) has been a real trial with Evie. My parents came over for dinner and she slept, well, like a baby. No sooner had they left around 9:00PM and she started fussing. It's 1:30AM right now and she's still crying. It gets us worried because the more she gets upset, the faster her heart rate gets, which could lead to danger. Her color has stayed good so far, but we've tried everything in the book to get her to calm down. She'll fall asleep, we'll put her down for 10 minutes and she'll start crying again. Oh well, at least Gavin is still asleep. Sharon's got her right now so I can get this post up. Here's just a few pictures from the last two days. I'll get the other ones up when Evie goes to sleep (if ever).

Evie's arrival on Monday night with Uncle/Godfather David and Grandfather Cordes:

Tuesday, Gavin wakes up and is surprised to see that Evie's still here (they're sharing the same crib for now, too).

A bath to wash off all that left over medical tape. The incision on her leg from her angiogram seems to have healed very well.



Sharon's spa and nails salon:




Evie: pretty in pink and ready for her close up.




Tuesday afternoon snooze.




Remember sleep Mom and Dad? Suckers!



I hope everyone has a Happy Halloween!

Evie's Coming Home

It's 3:00PM on Monday and we just got word from the hospital that they're discharging Evie today. Sharon and I are leaving right now to go out there (hopefully we'll beat the beginning of the killer I-294 rush hour). We need to stay there for a few hours to be trained in several areas (see last post), but Evie will be spending the night at home in her crib with her little brother Gavin!

Baby, Please Come Home

There is a 90% chance we could bring Evie home from the hospital today (Monday). Her numbers are stable enough that the surgeon thinks that she does not need the unifocalization surgery immediately, and so he would like her to grow a bit more before doing the surgery in approximately six weeks. We could take her home, and the good news is we wouldn't need to have the NG (feeding tube) or the heart monitor (because the doctors say it always goes off and scares the parents when it's really nothing).

We would, however, need to be trained in infant CPR and trained in recognizing when we need to call 911 because of a color change. Evie will often turn partially blue or a "dusky" color when exerting a lot of energy, such as when feeding, so we need to be able to tell the difference between a fluctuation and an emergency (which isn't an exact science, by the way, so I'll probably be calling 911 all the time).

She enjoyed several visitors from family over the weekend, but she was running a slight fever (101 F), but then it went back to normal. They nurses are watching her for 24 hours to see if she has caught anything. If not, we're hopeful the cardiologist will decide to discharge her when they do their patient rounds in the morning, between 9-10:30AM.

Regarding Evie's fever, the nurses first thought that she was bundled up too much (ya think?):




So they unbundled her a bit to see if she cooled off naturally (which she did some time later). Of course, she didn't like being naked and photographed by the family paparazzi either.



She attempted some form of modesty for the camera, but I'm sure the candid photos will end up on TMZ anyway.




Evie says to the camera that she's "Okay," and that anything else you've read in the papers about her hospital stay being for "rehab" is a vicious lie.




My sister, Clare, and Godfather David, were able to see Evie last Friday afternoon. Clare travels all over the country for her job, and it was was one of the few times she's gotten a chance to visit with Evie in the hospital.





Hopefully we'll receive a happy phone call by noon that our baby can come home!

Gaming with Gavin

As Evie was having a host of visitors at the hospital this weekend, we hung out with Gavin at home, watching lots of football, playing video games, and of course, drinking lots of Jamba Juice! Uncle David stopped by to hang out for a bit. And yes, Gavin is wearing his sister's pink potato sacks because he pee'd on all of his. We gotta get some more of those things (we have 8 already!).

Gavin said, "I was only this big when I born... 21 days ago."

After all that lively conversation with Uncle David, Gavin was all tuckered out.

On Sunday, Uncle Mark stopped by for a few hours to watch Gavin for a bit, watch some football and dish some fatherly advice (and play video games). Sharon and I were able to take a short walk in the beautiful October afternoon air. Sharon is recovering very well (and very quickly) from her c-section. She's not driving yet, but she can take several sets of stairs a day, and our walk today was one of her longest yet.

Here, Mark is either (a) casting a spell on Gavin; (b) faith healing; or (c) framing a scene like a wannabe movie director.

We played several games on my Nintendo Wii video game console. Uncle Mark was pretty good at bowling (boasting superior skills compared to his wife), so-so at baseball, good at tennis, knocked me out in boxing, and got progressively better at golf. After every hole of golf, Uncle Mark kept saying that he "really needed to get going" in order to catch a movie with an old high school friend of ours, but then he almost hit a birdie and played another hole... and then he put in Excite Truck and raced a few laps. He eventually left for the Halloween movie.

Here I am demonstrating my mad dual wielding skills: baby and game controller. I'm sure Gavin will get into games more once he can see further than 14 inches away from his face. Until then, I think the music just puts him to sleep (which is fine by me!).

No Surgical Updates Yet

Sharon visited Evie in the hospital today, but she was unable to speak with the surgeon or any of the resident cardiologists, so we don't know what the results are of their discussion of Evie's case from yesterday (even though the doctor we spoke with on Wednesday told us he would call us on Thursday). I know that the cardiac surgery team at the hospital is the best, but their communication skills with the families need serious work.

A nurse did tell Sharon that they wanted Evie to gain more weight, and that her instructions were that if Evie was not taking 50 cc's (30 cc's in an ounce) every three hours, then she would have to go back on the NG tube, i.e., the feeding tube. Sharon was able to feed Evie a 2 ounce bottle, but it took her nearly an hour to finish because Evie kept falling asleep during the feeding (but at least she took it).

We're going to call our cardiologist from Edwards on Friday to see if he has any news for us.

Camera Equipment

I've received a few questions about the digital camera equipment I'm using for posting pictures and video on the Legendary Blog here. The main camera I use is a Canon PowerShot SD800 IS; a 7.1MP Digital Elph Camera with a 3.8x Wide Angle Image-Stabilized Optical Zoom. I bought it from Amazon.com (no tax, free shipping!) about two weeks before the twins came. You can't get it in stores anymore because the new model, the SD870 has come out, but I really didn't like some of the design changes made in the new model (Canon dropped the optical view finder in lieu of a 3" LCD screen, and made all of the menu buttons much smaller and harder to push).

I primarily wanted a compact camera that could be turned on, zoomed and ready to shoot with just one hand (such as if I had to pull it out of my shirt pocket with a baby on one arm, or if Sharon was pulling it out of her purse when the kids are doing something cute). I spent weeks reading camera reviews and decided on the SD800 model because it met my one-hand-use criteria, and also for its wide angle lens and image stabilization features (it's the only compact camera that has a wide angle lens).

If you're not interested in the wide-angle feature, you can get this camera's cousin, the Powershot SD850, which has basically the same features as the SD800, but has 8MP and a 4x zoom (Gavin's Godfather, Mark Flory, just bought this model and he really likes it). You can still get the SD850 in stores, but you'll pay more than you would online and also pay sales tax.

The SD800 has been a fantastic camera in the month I've been using it, and I'm especially impressed with it's low-light and indoor picture taking ability with minimal "noise" in the photo. It also takes great video, and I can record up to 30 continuous minutes of standard-def television resolution (640x480) on a 4GB memory card.

The 2.5" LCD screen is very sharp, and the optical view finder is a must-have if you've got a bright sun at your back and can't see the LCD very well. It's thin and light weight enough that I can wear it on a lanyard around my neck, or leave it in the breast pocket of a button down shirt. The only drawback is that it doesn't use AA batteries, but it's not a big deal as I hardly use a flash, and keep a spare battery in the camera case anyway.

Canon has these preset "scene" modes that are very handy. I almost always use the "Indoor" setting with no flash. Here's a comparison shot from the twins' baptism with the lovely and talented Mark Flory standing in as our model. The first picture is "auto" mode with the flash on, while the the second picture is the preset "Indoor" setting with the flash off. See how the "Indoor" mode retains the natural color and lighting of the scene? (click on the pictures for larger versions).



I use a 4GB Kingston SDHC (secure digital high capacity) memory card (Class 4 speed) and keep a backup 1GB non-SDHC memory card in my belt bag, along with a spare aftermarket battery I also bought on Amazon. I use this Swiss Gear belt case from Best Buy, and I also use this SDHC USB memory card reader to download the photos and video to the computer. It basically turns your memory card into a flash drive that you can also take to Target or Jewel and plug into their photo printing kiosks.

The second camera I use is one that I bought over a year ago before my sister-in-law's wedding: a Canon PowerShot S3 IS; a 6MP Pro Series with 12x Image Stabilized Optical Zoom) (the new model is the S5 IS). The big features on this camera is the 12x optical "super zoom," and the flip-out rotating LCD screen so that you can hold the camera over your head, for example, and still get your shot.

The S3 IS also takes AA batteries (handy when you need fast replacements) and gives you complete manual control over shots, such as aperture, F-settings, white balance, ect. You can also switch lenses, but it's not as universal as a true SLR camera. It takes great video and good low-light shots. However, I like using the smaller SD800 so much though that I'm probably going to retire this camera soon, and maybe pick up a true Digital SLR camera for extra special occasions, like the Canon Rebel XTi.

Researching a new camera is not easy. Here are my favorite digital camera review sites for analysis, sample pictures, and also education about digital camera terms:

• Digital Camera Resource (my favorite!)
  
• Digital Photography Review (compares sample photos side-by-side with other cameras)
  
• Imaging Resource
  
• Steve's Digicams

Feel free to email me anytime with your camera or other tech questions!

Evie's Flutterbye Dreams

Sharon and I visited Evie in the hospital today and the first thing we noticed was that the staff had attached a giant mobile on her bed. This is the greatest mobile I've ever seen. It's more like a Disney World animatronics display than a mobile. There are birds that spin in a circle, rotate, flap their wings and move their heads as they circle around a night like shaped like the sun. One of the birds has some butterflies attached to its feet. It plays chirping noises and lullabies (and Canon in D!).



Evie was riveted by it. We saw several other mobiles like this attached to cribs and our day nurse said most of the kids loved this mobile. I took a short, 15 second video of it. I searched eBay after we got home and found out it is the Fisher-Price Flutterby Dreams Lullabye Birdies Mobile (what a mouthful), last sold in 2004. I bought one off of eBay immediately... well, okay, I told my Mom about the mobile and she bought it immediately, but still, I was the enabler.

Evie was in a good mood and as cute as ever. She took 2 ounces of formula mixed with breast milk (to make it higher in calories) and her color looked great; heart rate and oxygen levels were good too. We were able to speak with the resident cardiologist making rounds that day and he told us that the surgeon, Dr. Ilbawi, and the other cardiologists were meeting that afternoon/evening to discuss Evie's case, evaluate the angiogram and decide on a surgical plan. We should have an answer tomorrow (Thursday)!!

Evie's Hitting the Bottle Again

Sharon and I were able to visit Evie on Monday. Evie has been moved out of the Pediatric ICU unit and onto the "second floor" where less serious cases are located (which the nurses tell us is a good thing). The room she is in now is even bigger and more private than her PICU room, and even has its own bathroom. Evie is still wearing her monitors, but she has the feeding tube out for now, and takes a few ounces of formula from a bottle, but Sharon was able to bring several ounces of expressed milk for her to take as well.

The doctors have started Evie on a drug called Digoxin, which is supposed to help regulate her heart rate and lower the chances of heart failure. Our visit with Evie was fun, but frustrating as we weren't able to talk to a single doctor the four hours we were there, and I only got to talk to someone by cell phone on our way home. The pediatric-cardiovascular surgeon, Dr. Michel N. Ilbawi, hasn't come up with a plan yet for the unifocalization surgery, so Evie will be at Hope Children's Hospital for the rest of the week and probably next week as well.

We really hope the surgery happens soon so that we can bring her home. That's all we want right now. It absolutely kills us that we can't be with her more often, but it's difficult to get out to Oak Lawn to visit Evie because Sharon still cannot drive due to her c-section recovery and we have to care for Gavin and make sure someone is with him (as we can't bring him into the Children's Hospital). The nursing staff seems to like her, and they take turns holding her and cuddling her, but it's not like home.

Here are some video and pictures from the day. Evie was awake when we arrived and in a pretty good mood! Her color looks a lot better. She looks like a normal, pink baby, and not yellow or "dusky."











Sharon and I take turns reading chapters aloud from What to Expect in the First Year while we each hold Evie (you can see the book in my lap below). It's a great book, and there were several questions answered for which we had called the pediatrician's office about earlier.



I can't tell you how happy we were that she was simply a "normal" color. It was a big relief. I also got to change her diaper for the first time in the room. It probably sounds weird to be excited about that, but we were (it was a messy one too).



Still has a a strong grip!




When we were about to leave, Evie had just finished part of a bottle and was falling asleep. She started making these "cooing" noises that were just the cutest thing (although at first I just thought she was wheezing). Turn the volume up on your speakers when you play this video.



My parents visited her after work on Tuesday, and Sharon and I will be visiting her again on Wednesday. I'm probably going to go back to work on Thursday, as Sharon's father has Thursdays off so he can drive Sharon to Oak Lawn, and Sharon's mother is babysitting Gavin during the day. I still haven't gotten the full set of baptism photos uploaded yet, but I will try to do that soon.

We've received a flood of cards from people Sharon and I truly thank you all from the bottom of our hearts. Keep praying that little Evie gets better can come home soon!

Gavin & Da Bears

Evie was getting a host of visitors today (Sunday) so Sharon and I caught up on some sleep while relaxing with Gavin and some football.

Gavin started off the day saying a little prayer that his sister Evie gets better soon so that she can come home to play with him... and that Da Bears would win.




We started off watching the Patriots vs Dolphins game, but it was a slaughter (five of Tom Brady's six TD passes came in the first half of the 49-28 romp). The game was so boring that even the network tuned out in the 4th quarter to "a more competitive game" (the Ravins/Bills game? Hardly). Gavin agreed, and took a nap until the Bears played at 3:15PM.




The first half of the Bears vs Eagles game was a bit slow as well, with neither side putting up much offense, and the cowardly Eagles never punted to Devin Hester so the excitement level was zero. Then the Eagles punter pinned the Bears at their own 3-yard line with the Eagles leading 16-12 and 1 minute 52 seconds remaining in the 4th quarter. Victory for the Eagles looked imminent. Gavin couldn't bear to watch!




But then, the Bear's veteran QB Brian Griese did his best Brett Favre impression of a 4th quarter comeback and marched the Bears 97 yards down the field in under two minutes for a touchdown to Mooooose! Bears Win!




Gavin was worn out for the night after all that excitement and couldn't even stay up to watch the Steelers also try to make a great 4th quarter comeback (but they just couldn't catch up to the Broncos).




If it seemed like Gavin was wearing a different outfit in nearly every one of these photos, it's because he is. It was a big pee day and his diapers just couldn't keep up. He went through five changes of outfits throughout the day (and mommy Sharon had to change her shirt twice!).

Visiting Evie

Evie's angiogram was on Friday, and I was able to visit her on Saturday with my parents.

This is her new room at Hope Children's Hospital. It's very nice having her own private room.




She was still getting oxygen for most of the afternoon via a small tube down her throat (connected to the big blue tube on the plastic wheel pictured, but it was able to come out in the evening. Her poor little voice was hoarse from the tube. That "surgical tape moustache" (as the nurses called it) was able to come off too.




Evie's nurse for the day was Mandy, who was exceptionally nice to Evie. Apparently the nursing staff call her "pumpkin" because she's so tiny. You can see the mark where the doctors inserted the cardiac catheter into her right thigh during her angiogram. The doctors left it as an IV plug so that she wouldn't pull at the one on her arm anymore.




My dad and I with little Evie.




My mom with Evie after the oxygen tube had come out.




Evie in deep thought: "I think, therefore I am baby."




On Sunday, Godfathers David and Brad were able to visit Evie, along with Sharon's mother, her sister Diana and her husband Kevin. I only have some photos of David and Brad's visit though.

Here's Godfather David (and Sharon's brother) with Evie, who was able to drink a few ounces of formula from a bottle, and her weight went up a little bit!

Godfather Brad with a playful Evie. It's so nice to see her awake and interacting.

Evie does the same "winking" thing as her brother Gavin. I don't know if that's a baby thing or if it's just something the two of them share.

Successful Angiogram

Evie's angiogram started at 1PM on Friday and took about three hours, but was very successful and she came through the procedure wonderfully. The doctor who performed the angiogram told us that instead of having several small MAPCAs (described earlier in this post), she has one very large MAPCA that comes off her aorta and branches off to both of her lungs (she also has some much smaller MAPCAs, but her lungs receive 99% of their blood flow from the single large MAPCA).

The doctor was encouraged by this because it may make the unifocalization surgery much easier, as it is easier to reroute one large MAPCA than trying to tie together several smaller ones. Also, this large MAPCA, once it is cut from the aorta and rerouted, is more likely (in theory) to grow in size with Evie as she gets older.

Also, the doctor told me that he was able to view Evie's natural pulmonary artery (we previously thought she didn't have one at all because it didn't show up on ultrasounds), but it was so small as to be unusable. However, the doctor did say that Evie's heart was pumping very strongly, even though she only has a single ventricle doing all of the work.

One odd thing that will merit further investigation is that Evie's heart is apparently "way over" on her right side (most people's hearts are slightly to the left of their sternum), and this may indicate a slightly underdeveloped right lung. Some tests can be performed to verify this, such as an MRI scan or taking a sample of lung tissue, but right now the doctor told us not to worry about it as it doesn't have much impact on Evie's immediate heart issues.

Evie will be watched closely by the medical staff for the next 24-48 hours because her body will be cleansing itself of the "contrast fluid" in her blood, which is essentially a dye that is injected into the blood that allows the doctor's cardiac catheter camera to take better pictures. The kidneys are responsible for cleansing the blood of this dye, and it is a known risk that some people's kidneys do not react well to the dye, even causing the kidneys to shut down. There has been some concern about Evie's kidney function, so we'll be keeping our fingers crossed and saying extra prayers over the weekend.

The next stage is for Evie's cardiac surgen to evaluate the results of the angiogram and decide on surgical options. In the meantime, Evie will remain at Hope Children's Hospital for the next several days.

Sharon and I would again like to thank so many of our family and friends who have sent us notes and calls of enouragement. We're very blessed to be surrounded by such loving family and friends.

NICU Baptism & Evie's Big Move

We were so blessed to have so many of our family members available to attend the NICU baptism on such short notice. Even Gavin's godfather, our friend Mark Flory, gave us a pleasent surprise when he drove in from Gurnee to attend (we missed you Godmother Robin!). It was a very special occasion, very intimate, and also the most "normal" that we've felt as a family since the twins were born. We were able to congregate and mingle with the babies as a group instead of one-on-one visits. For 20 minutes the NICU was as close to a living room as we're going to get.

I can't say enough good things about the Edwards NICU staff; they were so accommodating and kind to us. We're very lucky. Evie was transported to Hope Children's Hospital about two hours after the baptism. I haven't had a chance to upload all of the photos from the day, but here are just a few shots. I'll post the full set of photos up on Flikr over the weekend.

This is probably the best photo I've got of both twins together. They both slept right through the baptism, even when the water was poured on their heads! Evie's color seemed to change by the hour. She was a "dusky" color, then had a tinge of yellow. The big splinter on her arm protects the IV's giving her nutrition. She was constantly gnawing on it and had dried pieces of tape stuck to her chin!



Here's Deacon Larry Kearney, from our church St. Thomas the Apostle, blessing the water. He performed a wonderful, touching ceremony and a special blessing for Evie.





The twins receive their baptism stoles.



About two hours later the EMT transport team from Hope Children's Hospital arrived. We have been so lucky that practically everyone we have encountered in the hospital have been kind and friendly. Here is Evie all strapped in and loaded up in her traveling container (which I dubbed the "cryo tube"). She's got her favorite "green suckie" pacifier, so she's all set.

Here's a short video of the scene and the friendly EMTs. Look at Evie go to town on her pacifier!




We arrived at Hope Children's Hospital shortly thereafter (parking was hell) and here is Evie all set up under a warming lamp in her new "home away from home." The hospital's NICU is a very large unit and every baby has a spacious private room. It's very nice there, and the staff was, again, fantastic. We met with the doctor who will be performing the angiogram and we also talked with some other mothers who were our "neighbors" in the NICU. There is a two-month old next door to Evie's room was born with only half of her heart, and who is undergoing her fourth closed heart surgery the next day.





Evie's "green suckie" pacifier is never far from her grasp.




Here's a short video of our feisty daughter. She's a fighter! The nurses think she'll do just fine during the surgeries.





I took this macro shot while holding Evie in my left arm. Her color was much better near the end of the day, although her hands would change color quite often; from pink, to blue, to dusky, to yellow, back to pink. It's all related to her irregular oxygen supply, but it's still odd to watch all the same. I dubbed it "HyperColor skin." (Let it be said that Sharon is getting tired of me "dubbing" things, but I'll note for the record that I did not dub the green pacifier the "green suckie"... that was one one of the nurses... although it's totally something I would have done).




Just a cute little bundle love.




Evie's angiogram is at 11AM on Friday, so please say a little prayer for her! Thank you to everyone who has sent emails and cards. I'm sorry that we can't personally reply to all of them, but know that you have our deepest thanks.