Midwinter Reflection

Throughout the month of December - as is the case most years - I naturally reflect back a bit on the year. What were the major milestones, where did we travel, what did we accomplish... This December has been entirely different. At periodic moments I hauntingly flash back to various moments of intensity throughout the fall with Evening's diagnosis and surgery. It seemed that as we were going through it - we just took each step as it came - because there was no other way around it - for Evening's sake we would do what was needed. Looking back now - its down right chilling how difficult and harrowing things were - and how unbelievably strong she was and continues to be. I estimate she is about double the size she was for the surgery - and to think about that little lady going through all of the procedures she required - absolutely floors me and breaks my heart. We are so very thankful and blessed for the results and her continued strong development. I will never forget those days and nights of the Fall of 2006 - as much as they still hurt - they are cause for great inspiration. Without a doubt - 2006 was the best year of my life thanks to Ruthie and Evening.

The sweet little lady is so very sweet and continues with quite the kick. Ruth now categorizes her as sassy, no longer feisty. She's moving like never before with this back arch limbo contestant move that is pretty powerful. She uses this move with powerful legs to inch across her crib in record setting pace. All her moving and grooving has also given her a pretty sharp bald spot on the back of her head. Its sweet but funky.

We look forward to some time together over the holidays - plan on heading to the Ithaca Farmer's market for the annual Rutabega Curl, heading to Rochester to see the Merles and Doyles, and also heading to Strong for a follow up and echocardiogram. They discussed the potential of having to put her on medications to get a good echo, but also have a room full of videos and TVs to sedate her if shes interested. As much as I am against having her zone out to the TV this may be a good occassion - perhaps we'll through in the Oregon Duck Football highlight video or a Bills Superbowl tape - no wait - that would only make her much more upset than they're looking for.

Evening Tree

One, two, three - cheese! After a day of decorating the tree Evening is a bit beat. Here we are seen in our holiday ware courtesy of Laurie Ahlers at Cornell. Blog enthusiasts may remember some of the earliest pictures of Evening in this hat...well Laurie was kind enough to customize some for the whole family. I like to get a lot of mileage out of my hat.

Wore mine out to the Southview Treefarm in Danby this weekend. The owner cut me a deal on the tree because the hat helped scare away the deer. I in particular love how it is juxtaposed with the Carhartt jacket. Oh and by the way - Evening is tucked under Ruthie's jacket - in the bearcub snow suit - here's an inside look...

We are all quite well and enjoying the holidays as they unfold.

Winter in Ithaca

Its just about that time of the year when we reach out to young Evening and teach her what its like to be an Upstate New Yorker - layer up to face the stiff winds, pull out the snow shovels, and complain about the coaching of the Buffalo Bills. I can just about see myself saying to her - "Not just anyone can handle Upstate New York winters, that's why so many people flee south and west - they can't hang with it - now button up, put on the hat and be proud." Winter is flexing its muscle and I'm trying to thicken my skin. We kept hearing about the wicked storm rolling in this weekend - and took that as an excuse to hunker down and take in a nice chunk of college football's last weekend. I'll have you know that both Evening and I called the UCLA upset of USC. Feel free to call Evening's tip line for the bowl season - she's got the over/under for every game out there.

Ruthie is fulling embracing motherhood along with the holiday season. I've been coming home to a full on Christmas funhouse each afternoon - decorations and tunes. I believe I successfully diagnosed Evening's "stomach ache" the other night. Turned out to be a little too much of Angela Landsbury's "Holly, Jolly Christmas". The ailment was successfully treated with a heavy dose of Bob Dylan.

She's Got It

So, with expert analyses it has been decided that Evening has the early love of the outdoors - just like her Ma and old man. Through a series of in depth, highly scientific studies its almost a definite. Taking her out in the backyard or on the trail - her eyes light up a bit more brilliantly a she typically carries a refreshing calmness. When she gets all riled up - she loves going outside and letting the wind ride through her long, beauty reddish hair. It certainly helps that this Thanksgiving brought in record 60 degree days for her enjoyment.

Evening continues to grow tremendously and is daily stronger. She feels a hair over 12 lbs now - but we'll get that verified on Friday at the pediatrians when we go for her next set of RSV shots. Her rest has become more regular as well with much more consistant crib time and is taking after her father, grandfather and greatgrandfather with the deep paternal history of daytime napping (she has however yet to fall asleep while reading the paper).

Thanksgiving was enjoyable up in Rochester with the little one. We did have to do a little dodge and move to avoid a couple family ailments - but it seemed to work alright. Sadly, I noticed my complete overindulgence in Thanksgiving feast compromised due to the fact that I held Evening during the meal - though I think everyone was thankful for that change.

This Friday - Evening will be three months old. Hoping that we can take a collective breath to realize what a trying but truly wonderful three months it has been. Can't wait to see what the next bit revels as she continues to strengthen, smile and grow.

Ode to a Mother

Heading into Thanksgiving week - and have a whole heap of things to be thankful for. These two are at the top of that list. Evening feels signficantly over 11 lbs., is stringing several hours of sleep together at night (7 straight the other night), is smiling more than ever, slept through church this morning (kind of like her old man), and gave some rousing support to the Buckeyes in their win at a Michigan party last night. She still is quite feisty - but I'm glad she is.

And Ruthie...man alive has she been so fantastic. I didn't think I could love / admire her more than I did in her pregnancy, but I do. She is so mindful, attentive and sweet with Evening. I am so impressed by the relationship they have at just 10 weeks. I am excited to watch Eve grow, but also see Ruthie growing as well. What a mother! I am one thankful fool that is for sure.

Heading up to Rochester for some Thanksgiving revelry: annual T-Day bocce game, a little frisbee and good company of friends and family. My best to you and yours with your holiday traditions.

Evening the Explorer

First off, apologizes to the folks that check the blog daily (I've heard from a passionate number of folks that check it first thing of the day). The getting back to work schedule has put a serious damper on my ability to update the blog. I'm finding myself in need of getting back into work shape. At about 2PM each day this week I start an embellished groan of how tired I am - and that I didn't get a chance to take my afternoon nap with my daughter. It doesn't seem to go over really well.

Ruth and her mother Rose did an excellant job teaching Evening a series of songs and dance moves this week. She gets a good shimmy going (Ruth that is). Evening headed to her two-month doctor's appointment (the standard one for infants). Gained another 8 oz. in about a week - now is 10lbs. 8oz. She also had her mandatory 35 some odd shots for everything from tetnus to beri beri - hold on maybe that's the one she needs to eat fruit for.

I was pleasantly suprised on my walk home from work last night as Ruth and Evening came and met me along the route. Evening is quite the outdoorswoman - it seems as if she's really comfortable outside. We are laying relatively low this weekend - huge sports weekend. Last night Evening's boys - Cornell Hockey Team - beat their archrivals Harvard in dramatic fashion; the old Ithaca College Bombers Football lost to Cortland State in OT; latenight tonight the Ducks play USC in a huge PAC-10 matchup (if Evening has trouble sleeping tonight - guess who's "volunteering" to stay up with her to help her fall asleep by covering the basics of a spread offense); tomorrow as per tradition Evening will sit with her father and obnoxiously route for her father's lowly fantasy football team - Team LowTech. I'd say its a pretty sweet weekend.

Thanks again for all - we have loved hearing what Evening means to people - people all over the world - friends of friends of friends - united in the care for her well being. I owe you all for your kind thoughts - thank you.

Ladies Only

Tommorrow - I start back at Cornell - so its ladies only. Ruth and Evening full time - with Ruth's mother Rose - kindly coming to assist for a few days. It has been wonderful to have had the time away from work to attend to Evening's care. With the back and forths to Rochester, and post surgical care we've had our hands full. I'd like to take a moment to recognize the great institution of Cornell, and our respective departments, for allowing this very important time. We have both been able to take advantage of a recent Cornell Family Leave policy that assists with that time. I am very impressed and extremely thankful for this.

Evening continues to impress. We've taken her on multiple walks, taken her to church and around town, and just have been present with her. Her smile is one of grandeur and her heart is strong in so many senses of the word. Lots to discover and learn throughout this winter.

Thanks again for your support to lean on - we appreciate all the little and big things! Be sure to get out and vote tomorrow! Evening is calling for a big turnout.

Perfect 10...Johnny or Ray???

Well, Miss Evening is a Perfect 10 - 10 pounds that is. Took a trip to our pediatrician today and lots of good news with her progress. She is back on the normal infant doctor visit schedule and has received her first dose of the RSV shot. He is quite pleased with her progress.

The big question of the day is who is Evening's favorite artist. When she really gets worked up only Johnny Cash - LOUD - can soothe her. We have noticed that the way she grooves to the music - most times the music in her head - is distinctive Ray Charles...

Those times when Ray is really cranking on the piano, and gets that distinctive sway going. She gets that rhythm going - with my shoulder being the keyboard. We'll have to push this data through the super computers at Cornell to determine at Month 2 - who Evening musically prefers.

Evening Rian - 8 weeks old tomorrow and is looking fantastic.

Building a Routine in Ithaca

Weather has been fantastic in Central NY - the ladies and I have managed to get a hike in each day this week so far. Evening is a big fan of the trail - so much so she likes to sleep. So many great places to expore in greater Ithaca - lots of good daytime sleep forthcoming for Evening.

She has been extra feisty during the day, but a bit more restful at night. We are headed off to the pediatrians tomorrow to set up her RSV shots and get her back into her standard infant shot routine, etc.

All continues well as we head into November. Its been a wild fall - one that I will never forget.

Hope all is well in your section of the world.

Full Time Ithaca

We are back in Ithaca - full-time. We will use this last week I have off to organize the mounting bills, cleaning up the house and yard, and enjoying sweet Evening. It is my hope that we can get a good routine going, prior to starting back up the work schedule next week.

Evening has been very spirited. She is sleeping with more regularity, though is quite "feisty". Though not ready to fully commit to it yet, Ruth feels that Evening has "redish" hair which may explain the feistiness. For those of you at home keeping track - that's possibly two red heads in the household!

No trick or treats planned for Evening - though weather looks good for a Halloween hike at a minimum.

All Good in the Neighborhood

Just got back from Strong and the cardiologist is smiling. He thinks she's making great progress. Her oxygen saturation level was 100%, she's 22 inches long, 9lbs. 7oz., her scar is healing well, her lungs are dry, and she is a beauty. They still have us being mindful of her exposure this flu season - washing hands, away from those with active illness - but she is looking great. She's due back at Strong just after Christmas for another echocardiogram - until then - he said - enjoy your beautiful daughter.

Great day - beautiful sun - sweet, sweet baby!

Deal or No Deal

Here is glorious Evening just post her bath today. She continues to impress us. Big follow up appointment at Strong tomorrow.

As I rocked with Evening in the hospital I found myself making a series of "deals" with her that I am now forced to honor. Below are a few.

1. Once you get through this I'll hold you and feed you whenever you want.
2. Once you get through this I will let you stay up late and watch the world series.
3. Once you get through this you can sleep in our bed until you are 10 years old.
4. Once you get through this I will buy you a Prius.
5. Once you get through this I'll let you stay out as late as you want.
6. Once you get through this I will let you climb all the high peaks in the Adirondacks with your Dad and Grandfather, and take you climbing in the Cascades on a regular basis.
7. Once you get through this I will sign for you to get a tattoo at age 13.
8. Once you get through this we can go to the circus, everyday its in town.
9. Once you get through this I'll let you date - when you are 16.
10. Once you get through this I will allow you to freely use the phrase - "Well, Dad! I did have heart surgery when I was a month old" to unlock the door to just about anything you want to do.

She is splendid folks - thanks again for all.

Temporarily Back In Ithaca

Just the three of us rolled back into Ithaca on Sunday afternoon. We plan on staying for a few days before heading back to Rochester Thursday for Evening's follow up appointment with the Cardiologist and lead Nurse Practitioner. We were all a bit nervous pulling back into town after some great grandparent care in Rochester knowing that it was just the two rookies on the watch, but as soon as we starting rolling up East Hill and stepped into the old house - it felt great. Evening seems to be taking to it as well with much steadier sleeping, and very curious eyes taking in the fall colors. We aim to get into a better routine, venture out in Ithaca with sweet Evening, watch the World Series together and read her some good books.

Cards, packages and letters have been flowing in - and we are so very humbled by all of your kindness. In instances like these I feel as if you sharpen your understanding of the world a bit - especially the network of support of your friends and family. Their is truly no network of support like that we have. Thank you so much - do know that we will be at the ready when you need support.

We are feeling pretty good - especially Evening. She seems a lot better everyday. She is again doing some healthy crying - but in some ways her crying sounds sweeter and more managable. For Thursday's appointment they are mainly looking to see how her incision is healing and give her another once over - we anticipate and pray for continued good news.

Enjoy the fall. More soon.

Evening - What's In a Name?

Evening is resting up well. Her scar is healing quite well and she's shaking off the hospital on her. She has been extremely vocal - and is showing signs of colic - though Ruth and I keep saying - well she did just have heart surgery. She is more adorable each day - and I cherish this time in helping nurse her back to her normal self.

So, her name, Evening Rian. Everyone seems to want to hear why her name is Evening. We've gotten a number of comments thus far from "Wow, that is the most beautiful girl's name I've ever heard" to "Is that a boy or a girl's name" to "That's different" to "What are you going to call her?". It's really quite simple - we've always loved the Evening. When we first moved to Oregon my first job there was doing trail work through Americorps. There was a native Oregonian I worked with there - named Evening. Ruth and I always loved that name. Evening (of Oregon) was one of a pair of twins of hipster parents who named their twins Evening Star and Morning Star. Based on the fact that this was the first time we had heard of this great name - this is where it originated. Now, post birth and official naming we were informed that she was born on the birthday of the Blessed Mother, Mary. In the New testament, Mary is considered the modern Eve. So there you go. Wish we could take credit for being quite that deep and insightful. But I love the fact that she shares that special birthday. In terms of the middle name Rian - we have always loved Rian as a women's name especially with the Gaelic/Celtic spelling. When you do in fact meet her - her name is proudly Evening - though if she warms up to you - you can call her Eve or Evie.

We are still in Rochester and doing well watching Evening rebound and the fall unfold. I have been very impressed with her progress - after all it was just a little over a week ago that she was taken off the respirator - now she's howling at the moon and smiling in between.

Go Big Red and Go Evening!

We are super fans of Evening, and it seems that the Big Red hockey team is too! You may or may not know that we love Big Red hockey. When we returned to Grandma Rose's house on Tuesday, there was a package for Evening from the Cornell Hockey team. Inside was the picture above and the sign that they are holding (it says "Hi Ruth and Scott. Get Well Evening") that is autographed by the whole team. Many, many thanks to Beth and Tim McKinney for organizing this gift for sweet Evening. It will immediately be posted in her room and her Mom will visit it often!!

Evening is happily adjusting to life at Grandma's house. She seems to be making up for lost time in the eating department and is keeping Ruth busy 'round the clock. She must take after both of us and loves to eat! Her days and nights are a little flip-flopped now, but we are giving her a break...she did have heart surgery only a week ago! She left the hospital at 8.5 pounds (down 1 pound from admission) but already feels like she might be well over 9 pounds again. She's catching up on her sleep (during the day) and practicing her smile more and more. Recently we learned that she likes her music loud - especially when Johnny Cash is rocking! Even at 3:00 am, with no sleep and holding a howling baby, she makes us blissful.

Thank you to all for your unending support. When Evening meets you and shows you her smile that she has been practicing, you will see what prayer and positive energy is capable of.

Rockstar Evening Rian

Evening is a Rockstar. I'm not talking a REO Speedwagon frontman type of Rockstar, but more of a Mick Jagger or Bono type of Rockstar.

Sunday - Evening had a pretty rough day. Struggling to eat, and was pretty upset. Though come Sunday night she picked it up. She ate much better throughout the night, rested well and come Monday morning she had her chest tube and IV out. Throughout Monday she continued to improve and eat well. In the afternoon, I went with her down to have an echocardiogram to verify how the surgery had gone. Later at night she was transferred to the step down unit (step down in more ways than one - lower level of care, lower quality facilities), but a sign that she was closer to discharge. Ruthie and I kept an rotating all night watch with her and she did fantastic. After some final reviews this morning - she miraculously was discharged - just 6 days after open-heart surgery. She truly is amazing.

The days of the last several weeks blend into an emotional cocktail - especially the last few - but I will never forget the following items from the hospital stay.

DAY 1 - Wed. Oct. 11 - Bringing Evening in and handing her over for surgery and waiting, waiting, waiting. Hearing the fantastic news from the surgeon, seeing her on a respirator and a collection of support machinery. Checking in to the Ronald McDonald House.

DAY 2 - Thurs. Oct. 12 - Sitting by her bedside in the PICU, staring on the monitors, having her breathing tube pulled at 5:30PM.

DAY 3 - Fri. Oct. 13 - The big snow storm in Rochester, snow on the hospital rooftops, Evening continuing to improve. Some IV's removed.

DAY 4 - Sat. Oct. 14 - Many more chances to hold her, while negotiating the tubing and wires, eyes still on the monitors.

DAY 5 - Sun. Oct. 15 - Tough day, no appetite for Evening - in the private PICU room. Really starts feeding well at night.

DAY 6 - Mon. Oct. 16 - Pulling of the nasty chest tube, continued good feeding, walking her down to the echo area. Transfer to the step down unit.

DAY 7 - Tues. Oct. 17 - Huge morning, great test results, having the chance to get her out in the air and away from the hospital.

It's really tough to put into words the sense of joy we are experiencing in bringing her "home". We so much appreciate her, our tremendous friends and family and faith for giving Miss Evening strength. I've learned so much from her these first 6 weeks regarding strength and patience - and am committed to savoring each moment with her. We can't wait for you to meet her - we thank you so much for your thoughts.

Ruth and I are exhausted, but in many respects are better than ever. We are currently resting in Ruth's mother's home in Rochester. The three of us have a series of follow up appointments, but look forward to transitioning back to Ithaca a little later on. Look for more pictures and updates shortly. Be well.

Train Keep a Rolling...

...all night long. Here's a shot of Ruthie and Evening yesterday in the PICU. Sweet Evening is still on the mend and located now in a private room in the PICU. She now is off of supplemental oxygen, but still has a chest tube, one IV and various monitors on her. She is one tough women though - we are both very impressed with her. The team of surgeons, cardiolgists and nurses seem quite pleased with her progress. The most difficult thing is getting her to eat regularly again. She isn't very interested in eating (but then again I wouldn't be either 4 days from open heart surgery with tubes every which way). It will still be a few days until we check out. Until then she continues to charm the staff so much that they argue over who can work with her.

We continue to be blessed with staying in the Ronald McDonald house that sits just the floor above the PICU (http://www.ronaldshouse.com/). I am again so pleased and impressed with this entity. Its been a very helpful place to retreat to sleep and eat briefly.

Keep the thoughts and prayers rolling - they seem to be empowering little Evening a touch more each day.

Oregon Loves Evening!

This touching photo just in from a great mix of friends from the University of Oregon. The picture is shot outside of one of our old haunts, McMenamin's East 19th Street just south of the University. The picture features some of the best people I've ever met (and some of the younger members who I've yet to). I could tell you great tales of each of these folks- right to left - but will save them. I will note that the individual in the middle holding the Oregon "O" is United States Representative from the 4th District in Oregon, Peter DeFazio (http://defazio.house.gov/). He is stands as a great example of what a politician should be - not afraid to ask hard questions and always standing up for Oregon's great communities - plus he's yet another one of my heroes united for Evening. Thanks so much Eugene for your support - I love it - Go Ducks.

Evening continues well. She has had more IVs out of her and is waking up more. She has gotten more "vocal" and emotional (looks like she's developing tears in tandem with her recovery). She has yet to breastfeed due to much of the medication she's on - though I anticipate it soon. There has been some discussion of sending her from the PICU to the step down unit where they help us get prepared to take her home - though that likely won't happen until early next week.

Slow and steady wins the race. We've been reading Evening a collection of books that she enjoys. Favorites currently feature The Lorax and The Little Engine that Could. If you remember from this old gem - the "blue" female heroine saves the day - "I think I can, I think I can, I think I can" - Evening really loves that part.

Did you know...?

1)...That "The Flying Tomato" - 2006 Gold Medal Olympic Snowboarder Shaun White has Tetralogy of Fallot???!!!

My man had two surgeries before he was 1 to correct the same issues Evening is wrestling with.

We already knew Evening was capable of greatness - potentially gold medal greatness. Will that greatness be olympian? Senator? Environmental Activist of our time? The answer lies in the Evening!

2)...that one of my new heroes, Dr. Alfieris, who performed Evening's surgery bears an uncanny resemblence to Andy Garcia? Ruthie said she loved him in When a Man Loves a Woman. Love this guy.

3)...that Evening has a bonafide fan club? This shot here is of the club president Benjamin Spudic - sent in by his old man - my man Mike Spudic in Virginia - good buddy from college. Benjamin - please know that you can not at this point date my daughter. We can talk at greater length when you are 18.

Evening has had another excellant day. She now has her ventilator and catheder out and kind of resting.

Our cardiologist told us today that we are not out of the woods yet. Though I must say these woods are like those of the Oregon Cascade foothills - still scary, but full of beauty and wonder.

Keep those sweet thoughts pouring - we are touched by your words and support.

Progress Still Good, But Long Road Ahead

As difficult as it is to see this little month old girl on a ventilator, and with what seems to be a dozen tubes leading in and coming out of her, and a sizable incision, we take comfort in knowing that things went well yesterday. I sense it will be a long recovery. She is currently known as the squirmer in the PICU, because she keeps wrestling around.

Again, everyone we speak with is impressed with how she's doing and were pleased with the surgery. They sense that further down the line, likely in her teens if things progress well, she'll need to have a valve replacement, but I'm banking on medical advances to have that done via scanner or tanning bed, not open heart surgery.

Keep the thoughts and prayers coming - we'll certainly need them to help her move through the PICU and mend to the point where we can hold her again and get her home!

Thanks again for all.

"SHE IS PERFECT!!!"

At approximately 2:30PM EST we were visited by Dr. Alfieris in the PICU. He busted through the doors with double barrell okay signs and a gregarious grin - declaring - "She is perfect!!!"

Unbelievably, he was able to do the full fix which included patching the hole in the septum, patching various aspects of the pulmonary artery and trimming the enlarged aspect of the heart. There were a few other aspects, though these were the main ones. He indicated that she had a pretty severe case of Tetralogy of Fallot and that it was really beneficial that she could have the surgery when she did. Evening's oxygen levels have significantly increased and her transition to the PICU is going well. I love this guy - he gives us this report - I was so elated I pulled him in for a bear hug (please note this is not my typical response to medical care providers).

She is currently on a ventilator and has a variety of leads in her, but is resting well and starting to wake up a bit. It sounds like recovery will be difficult over the course of the next week, but she, along with the entire staff at Strong did a tremendous job today. I am convinced that because of this talent and all of your thoughts and prayers - Evening is having a great day.

On top of it all the good folks at the Ronald McDonald House are changing my previously negative image of fast food giant. Great accomodations the floor just above Evening. Ruth and I are quite beat up, and between shifts with Eve - look forward to resting there. I am truly grateful for the space. Sure, I'll never take Evening to eat at a McDonald's, but I will certainly tell her of the kind heart of the house system each time we pass a golden arch.

Keep the thoughts coming - we surely will need them. HUGE DAY TODAY - I love Strong Hospital, the University of Rochester, Dr. Alfieries and the many good folks that support the operations here.

More soon - Hang on Little Tomato! http://www.pinkmartini.com/hang_on/pm_hang_on.html

Pre-Op Report

Evening was put through the ringer today in the pre-op logistics (blood tests, intensely graphic chest x-rays, etc.), but she is resting well for the big day tomorrow. Below are a few bits of information we picked up today that may be of interest.

-Duration of surgery: The estimated time for surgery is 4 hours. She is again set to begin at 10AM EST.

-Length of Hospital Stay: There is a 10-day estimated hospital stay. Roughly a few days in the Pediatric Intensive Care Unit (PICU), and others at a step down unit.

-Parental Stay: We can be at her side most of the time - and will likely be allowed to stay at the in-house Ronald McDonald House during part of the time.

-Surgeon Background: The surgeon for Evening's operation is Dr. Alfieris, a Georgetown trained surgeon who does a number of heart surgeries a week - and approximately one Tetrology of Fallot surgery a week. He is assisted by a team of solid folks many of whom we met today.

-Nature of Surgery: Evening is slated to have the full heart fix at tomorrow's surgery, however based on her anatomy may only be able to have shunt placed in to increase blood flow. We are really praying that they are able to do the full fix. She likely will need another surgery - though with a full fix that could be several years down the line.

-Patient Report: Though her oxygen levels registered fairly low today, Evening is still strong as all get up. She now weighs 9.5 pounds, is not noticeably blue, and fills her diapers with vicious reliability.

Ruth and I are a bit haggard, but ready. We realize that this is a necessary step and find comfort in knowing her this last month. We know that she is strong and ready too.

Again, so many have provided such tremendous support from making food to suggesting hospital reading material to caring for Evening to offering financial support. We really appreciate all of the kind words. What we need over all else is your continued thoughts and prayers - they have helped such a great deal so far. Thank you so very sincerely.

The theme for tomorrow - and for the next several weeks... "Hang on Little Tomato" - based on the name of one of our, and Evening's, favorite groups - Pink Martini out of Portland, Oregon. We've played and sang the songs from this disc to her both in utero and throughout this last month...So...Hang on Little Tomato! We will do our best to keep you updated with her progress.

Pink Martini - Hang on Little Tomato

The sun has left and forgotten me. Its dark, I cannot see.
Why does this rain pour down? I'm gonna drown - In a sea - Of deep confusion.

Somebody told me, I dont know who. Whenever you are sad and blue.
And you are feeling all alone and left behind. Just take a look inside and you will find.

You gotta hold on, hold on through the night. Hang on, things will be all right.

Even when its dark. And not a bit of sparkling. Sing-song sunshine from above. Spreading rays of sunny love. Just hang on, hang on to the vine. Stay on, soon youll be divine. If you start to cry, look up to the sky. Somethings coming up ahead. To turn your tears to dew instead. And so I hold on to his advice. When change is hard and not so nice. If you listen to your heart the whole night through. Your sunny someday will come one day soon to you.

Ramping up for Strong

Evening Rian at a day old in Ithaca- Hat a handmade gem of Laurie Ahlers of Cornell

We are ramping up for a big week for Evening Rian. With Wednesday's impending surgery we are preparing mentally and physically. Packing up the bags, compiling some good books, and building a list of additional questions for the surgical team.

For folks out of the area - we are headed for care at the Golisano Children's Hospital at Strong which is connected with the University of Rochester Medical School (http://www.stronghealth.com/services/childrens/index.cfm). I had great success as a kid with a surgery there and we have had good interactions with the staff thus far. Ruth and I would take her to any end of the earth for this procedure, and feel that the surgeon and team there are at the top of the list. We are happy to be returning home to where much of our families reside for the operation.

Evening has been great. Still wrestles with some gas issues, but is looking fantastic. I will say that she - along with her father and grandfather - were not too happy during the Ducks and Bills performances this weekend - though she looks and acts like a normal month old beauty. That's the wildest thing with this whole ailment - she looks and acts fine outwardly - though inside is struggling.

We still find it hard to believe that she requires surgery - and this quickly - but are pleased to have such a high level of care and such a tremendous support from folks around the world. Thank you from the bottom of our hearts.

Please continue thinking of us - Wednesday 10AM EST is the big day/time. I will do my best to keep you updated. Thanks again for all.

Surgery Set for 10/11

We were surprised to hear from Strong Children's Hospital in Rochester today that Evening's surgery will be set for next week Wednesday. An opening came up next week and they feel good about having an opportunity for her to have surgery prior to the risky flu season. She is scheduled to have the full repair done and will most likely need to have another surgery as her body grows, but that hopefully wouldn't be for several years.

Ruth and I are a little thrown off having it so soon, but understand its for the best. We head up for pre-op next Tuesday with her surgery scheduled for 10AM on Wednesday. They indicated we should anticipate a 10 day hospital stay.

Please continue to keep Evening in your thoughts - she shines brighter everyday.

Tetralogy of What???

To be perfectly honest, when Evening was diagnosed with Tetralogy of Fallot I was thrown for a loop in more ways than one. A foolish item I was hung up on was the wild name. I thought the doctor was referring to a dungeons and dragons term or a new PlayStation game. Strangest name.

The word Fallot is actually the name of the doctor who described the four heart defects. The doctor a French physician and cardiologist name is Ettienne Louis Arthur Fallot was born in 1850 and died in 1911. The first part of the word tetralogy is tetra that is a Greek word that means four (describing the four aspects of her condition).

The physician encouraged us not to go online because of all the misleading information out there but some that may provide some guidance are below:

http://www.americanheart.org/presenter.jhtml?identifier=1299

I'm back at work now and Ruthie and her mother Rose are caring for Evening. Apparently, fantatsic day today. Lots of good rest and I got to tell you - it beats me up being away from her but so great to come home. She honestly looks noticeably older each day and continues to be so sweet! Things are looking great today.

In this corner...

...from Ithaca, NY...wearing the pink trunks...21.5 inches....weighing in at 8 pounds, 12 ounces! Evening Rian! Looking good from the pediatrician front - she gained almost a pound in the last week. Keep it going, Eve.

One of the major concerns now is keeping her healthy. Apparently respitory ailments can be especially dangerous for young people with her condition. So, she is semi-quarantined - meaning that she has to have some shots, her main caregivers need flu shots, we need to wash everything and limit visitors. So, as much as we want to see folks - we'll just have to wait to celebrate with her after surgery.

Thanks again for all the tremendous support.

Home in Ithaca

Back home in Ithaca and resting nicely. Evening and I just helped push the Bills and Ducks to victory by laying on the couch. Just trying to organize the house and ourselves. Evening did not enjoy the first bath we gave her at home and let us know about it. The most difficult thing is handling her when she has an upset stomach, etc. After spending last weekend in the Neonatal Intensive Care Unit and having her rigged up to a series of monitors - the time when she has the lowest levels of oxygen in her blood are the times when she is upset. So, we want to soothe her even more so than we did in the first couple of weeks. Things are alright - not quite as smooth as with grandparents at close hand (thanks so much Grandma and Grandpa Doyle (of Daley Blvd.) and Grandma Rose!), but she's hanging and enjoying watching the leaves fall.


We visit the pediatrian tomorrow to ensure she is continuing to gain weight. In my expert opinion we are good in that category. I plan on returning to work on Tuesday in order to bank time for her surgery sometime down the line. Ruthie is home for awhile and her mother Rose is coming down this week to help out.

Ruth and I are so thankful for your thoughts and prayers. Coming in from all around the world from folks we don't even know. As one person put it - with all these folks praying for her - she's bound to be okay. Think good thoughts and know we appreciate it.

Surgical Dates Yet to be Set

Evening will be having at least one surgery in the approaching months, though dates have yet to be set. The team of cariologists and surgeons did not discuss her case yesterday - rather decided to discuss it next Thursday. I'm partially pleased that she isn't rushed in for emergency surgery, but also disappointed that we can't set a date to ramp up toward.

Evening is sweet as can be - just up to the typical moving and grooving of being a newborn (from what I've been told is typical). She's up a lot and has some stomach discomfort not thought to be associated with her condition. She's currently resting beautifully on her Mother's chest.

We plan on heading back to Ithaca tomorrow morning and hang there until we hear more information. Evening has requested that we wait at her Grandmother's house until after she see's College Gameday to make sure the crew picks the Ducks to hansomely handle Arizona State in tomorrow afternoon's game. I'll be sure to post some more photos of the sweet lady when we return to Ithaca.

Good Evening

So, Ruth and I have had a bit of a trying week. Sweet little Evening born back on the 8th of September was a sweet dream from the moment she was born. On the second day of our brief stay in the hospital a nurse picked up on a heart murmur which wasn't considered a big deal. We brought her home nervously (because she was a sweet tiny being not because of the murmur) and she was great. At her first pediatric visit a few days later they confirmed the murmur and referred us to a pediatric cardiologist in Elmira. That appointment was set for last Friday - her two week birthday.

We suspected it would be a routine visit because she was great at home - looking good and keeping us on our toes. After an Echocardiogram, an EKG, a saturation test and a few others the doctor informed us that Evening had a serious condition. He described the condition known as Tetralogy of Fallot. About 8 in every 1,000 newborns have a congenital heart problem and of those a small percentage have this particular problem. This condition is comprised of 4 particular issues according to the American Heart Association:

1) The first major one is a ventricular septal defect. This is a large hole between the two ventricles that lets venous blood pass from right ventricle to the left one. FRom there it goes to the aorta and on to the body without passing throuhg the lungs to be refreshed with oxygen.

2) The second major component is a stenosis at or beneth the pulmonary valve. The narrowing partly blocks the flow of venous blood into the lungs. This is the most intense issue for sweet Evening.

3) The third component is that the right ventricle is mor muscular than normal; and

4) The fourth component is that the aorta lies directly over the ventrical septal defect as explained in the first component.

Symptoms such as blueness can result due to that fact that the body isn't filled with enough oxygen.

After this was diagnosed she was admitted to Arnot Ogden hospital in Elmira in the Neonatal Intensive CareUnit for observation. She did fairly well there and on Monday we brought her to the Strong Children's Hospital in Rochester for more detailed follow up. We now wait for the team of cardiologists to determine when and how many surgeries she will need. Likely they will occur in the upcoming months.

You wouldn't know she had such an ailment from looking at her - she is gorgeous as ever and resting well.

We plan on using this blog to keep folks around the country abreast of the sweet lady's condition. I'll also likely use this is a platform to rant about my frustrations and also my sincere appreciation for all the support and prayers coming in. Please keep them coming. We love you and thank you all.

Welcome!

Weblog dedicated to the Special Heart of Evening Rian Doyle.


Evening Rian Doyle was born on September 8, 2006 to proud parents Scott and Ruth.
She arrived at 9:37 pm, weighed 7 lbs. 3 oz., and was 20.5 inches long.


Evening spent some time at Arnot-Ogden hospital in Elmira this weekend and was subsequently referred to Strong Medical Center in Rochester after being diagnosed with a heart condition. Scott updated us on Evening's condition today:

Just wanted to provide you a brief update on where we are at with Evening's condition. Her appointment at Strong yesterday confirmed that she has the congenital heart condition - tetralogy of Fallot. It is a condition where she basically has 4 current problems with her heart. The Strong Children's Hospital in Rochester's cardiology team is determining based on her anatomy when she should have surgery and how many surgeries she needs. They usually do one major bypass surgery to correct all the conditions at about 4 months of age, though in her case she may need two - one prior to the fix to install a shunt to help increase oxygen levels. The group will meet either this Thursday or next to determine when she needs surgery.

The trick now is to help her gain weight for her surgery and make sure she doesn't turn extremely blue. She is acting terrific and looks great right now.

Evening, Ruth and Scott are resting with family in Rochester, and expect to return to Ithaca next week. Scott and Ruth would like all of you to know how thankful they are for your support throughout the past weeks.