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.