Full of Thanks

Man alive this has been a year of great ups and downs - one completely full of itemws to be thankful for. Great family, home, work...and without a doubt tremendous health for my girls. Kellyn continues to grow (now over 18 lbs.) and impress - Evie continues to inspire.



Kellyn working out with her P90X Rolling Ball

Rolled up to Rochester for Thanksgiving with both the Doyles and Merles. Both girls did outstanding with the travel. Evie places playing with her cousins as her favorite Thanksgiving memory.

Of course we watched a lot of football this weekend including the top-ranked (now #2) Ducks. Evie's football analysis continues to improve. She of course is a big Oregon Fan - "Daddy when I say Oregon you say - Go Ducks!". Oregon is known for their slow starts and I was bemoaning that on Friday - she said as she often does "Daddy don't worry - I'm hear now." Apologies to Western NY, but Evie was interested in the Bills - Steelers game I was watching earlier chiming in "I wish the Ducks were on - I bet they could beat the blue team (Buffalo)." Probably so Evie. Ducks play their rivalry game to realize the dream of playing for a National Championship. Going to be a tough one...should be alright as long as Evie is watching!

Brave Heart

A windy, cold weekend had us burning some time in a local bookstore. Ruthie read Evie some stories and I had Kellyn in a carrier just walking the aisles just taking in what there was to see. I walked by the "baby" section and saw one of those ridiculous 60,000 baby names books. For some reason I picked it up and leafed to the girls section - always love seeing Kellyn in print. Sure enough it was in there,

Kellyn (Irish) - brave heart

WOW! Almost teared up on the spot. I had never seen her name defined that way. Saw it defined as the "mighty warrior" and "mighty warrior woman" of course and certainly felt it fit, but man alive - brave heart. William Wallace ain't got nothing on my gal.

I then flipped to the E section - nothing for Evening or Evie as expected - one of a kind little lady.

The girls continue to exceed expectations.

Pumpkins and Ducks

Banner fall in the Doyle household. Two healthy little ladies, extra sweet Mama, good work, great folks, awesome town...and the Ducks are running wild. Evie is a hard working, fun loving lady...disappointed on Saturdays when I tell her that tomorrow is not a school day. Kelly is straightening out her sleep and is gaining weight like crazy...now at over 17 lbs. When I hold them close and feel a heartbeat I immediately worry about how those little hearts are functioning, but then I take a step back and see how wonderfully beyond "normal" they are. Yet they are tremendously solid and strong - think we are looking at a future national team soccer player in Evie and an Olympic skier in Kell.



Evie wrangling some candy from the neighbors on Treva Ave.




Kellyn as the hot pepper getting ready to sleep. Of course the costume reads reads "Hot Stuff".


Win the day!

See you in 3

Photo of Kellyn taken by her sister Evie

Rolled up to the Rock (Rochester) yesterday for Kellyn's follow up cardiology appointment. Always a pretty anxiety filled trip. She was weighed (whopping 16lbs. 6 oz.), oxygen sats were taken (100%) and EKG was read. Her cardiologist Dr. Gaum listened to her, investigated her incision and asked us about a few things then declared her to be looking really good. So good that she could stop taking her diaretic and would not have to return to his office for 3 months. Beauty thing. Her heart will never sound or function as a normal heart - as with Evie's - though that is to be expected with the type of surgery she had.

So all is really, really great. We are soaking up the fall in Ithaca - I don't think there is a better spot to be in the world in autumn than the Finger Lakes (except perhaps #1 Oregon).

4 Weeks / 4 Years

This week marks 4 weeks from Kellyn's surgery and she's doing fantastic. She is sleeping a bit more consistantly, her incision looks fantastic and her spirits are high. We had her in for her 4 month appoinment last week and we found out that she is the same height as Evie was at 4 mos., but is packing an added 2 lbs! Hats off again to Ruth and Kellyn for their solid feeding schedule it really has helped with Kellyn's recovery. She continues to impress. The next step will be a follow up with her cardiolgist in Rochester next Monday.

This week also marks a whopping 4 years from the surgical date for sweet Evie. What a striking reminder of the great results that can come from pediatric surgery. She continues to have no limitations, seems to be the fastest and sharpest kid in her class (keep in mind I'm a bit biased). She inspires me daily. We celebrated by going out and ordering the largest sundae we could find. She is beautiful and bound for greatness and no better a big sister could you find.

Glimmers of Normal

As I've noted earlier, things will never again be normal for our family post major cardiac surgery on two children in their first months of life, but the aspects of the wonderful day to day are beiginning to resurface. Sleep is getting a bit better, we can sit down to eat as a family (thanks to the killer meals from the County Planning Department and others), we take walks together, Evie is back in Pre-K...good routines are coming back together. We've even managed some good trips out for hikes, apple picking and trips downtown. Its great to get the girls out together. Settling back in, embracing the fall and seizing the day.


Apple Picking at Littletree Orchards, Newfield, NY



Evie along Sixmile Creek at the base of falls she has labeled "Angry Falls"



Kellyn livid after her Ducks fell behind 21-3 to Stanford on Saturday night. Rest assured Kellyn slept "like a baby" after being informed the Ducks stormed back to beat the Cardinal by 30. Go Ducks!

Sleepless in Ithaca

Photo compliments of Mr. William Kay.

Days back in Ithaca have been wet, but great. Little Kellyn is overall very cheerful. However, at night, Dr. Jekyll arrives. She is having a heck of a time getting back into sleeping on her own - and as a result so are we. Sweet Evie does her best, but she is rocked awake with some regularity. Kellyn is tired as all get up, but is peeved off to be on her own. So, that is taking some work. Pediatrian confirmed that there is nothing related to the surgery that seems to be affecting this. So, come 7PM we get our paramilitary gear on and go head to head with her to help get her, and the rest of the family some sleep.

Looking forward to a restful weekend. I have a date with Kellyn at 10AM for ESPN's College Gameday from our west coast home of Eugene were our Oregon Ducks host the Stanford Cardinal tomorrow night. Huge game. Evie and I are planning to, delay the bedtime a bit and cook up some popcorn and watch the Ducks at 8PM. Feels like a good weekend on tap with this, fall foliage, and Ithaca Apple Festival - and some more restful nights!

I wanted to take a brief moment to send an open letter of thanks to our friends and family as well as medical staff that have assisted us along the path to recovery.

-Dan and Diane Doyle (Mom and Dad) along with Rose Merle (Mom) have been so helpful before and after surgery with places to stay, care for Evie and all sorts of support - thank you.

-Our extended family members - both Doyles and Merles. Thank you for all your thoughtfulness.

-The staff at the Strong Golisano Hospital includlng cardiac surgeons Dr. George Alfieris and Dr. Francisco Gensini along with Gina Cable. Dr. Eaton and Matt. PICU staff Dr. Karen Powers, Dr. Eugene, nurses Adrienne, Kate, Jerry, Sarah, Ginny, Beth, Stacey, Kristen, Sharon, Christine and Stephanie. The outstanding nursing staff of 4-1600 where we spent the bulk of our time including Gina S., Amy, Nancy, Patti, Holly and Maureen. All of the Patient Care Techs including Ada and Petronia as well ass the Environmental Service and Dining staff were really helpful as well. Thank you all - and the many others - we will never forget your help.

-The Ronald McDonald House staff especially Carolyn and Carol Anne. The ability to get a few hours of rest within a quick shot of Kellyn's bedside was so critical.

-Our workplaces - Tompkins County and Cornell University and many other friends who have dropped off food to help as we transition back to Ithaca - thank you.

-The many fine folks who have sent a message or note of support, or made a donation to the International Children's Heart Foundation on our behalf. Thank you.

And many, many others whom I likely am overlooking - we have been humbled by your generosity.

Thank you.

Sweet Home Ithaca

Skynyrd was way off...its Sweet Home Ithaca! Kellyn rocked through the weekend sweetly with some discomfort but all in all solid. She had her follow up appointment this afternoon and staff was very please how she looked, how her incision was healing, etc. So much so that they dialed back her meds (just a diaretic), had her go for one more chest x-ray to confirm how things looked, and sent us on our way (due back up to see the cardiologist on October 18th). So we picked up Evie who was with her Grandparents (thanks Mom and Dad!) and busted back down to Ithaca on a rainy fall day.

The girls slept the whole way back and everyone felt good rolling back home. Shared a few dances and a hearty dinner and retired for an early sleep.

It will be easy to pick me out around town. I'm the guy with a wild the extra skip in my step, huge smile on my face, and full heart. No two ways about it. I'm the happiest, most fortunate guy in the world. Three lovely, healthy ladies at my side.

Recovery at home begins now.

Flight of the Mighty Warrior

It was a ninety degree September day, massive winds were blowing the early fall foliage to the ground. It's a day I will not soon forget. The day Kellyn was discharged from her heart surgery.

Much to my surprise Kellyn's surgeon, Dr. Alfieris, directed the team to pull Kellyn's chest tube and initiate discharge. We questioned this because what seemed to be higher than ideal outputs still. They indicated that since it had been in for nine days and the volume was leveling out - it was wise to take it out. I had to take direction from the good doctor whom we have taken several leaps of faith with and I have literally entrusted the lives of my daughters to.

So chest tube pulled (another really enjoyable event) and we rolled down to have a sedated echo (yet another enjoyable event). I had to hum the Oregon fight song, Mighty Oregon, over and over again just to keep myself sane as she drifted off. They then brought her in for her echo where she laid on a little twin bed as a nurse monitored her vitals and the tech performed the echo. I took the opportunity to jump up on the bed with my little passed out gal and held her limp hand.

We then proceeded back up to the room for her wake up and discharge. She was in tremendous spirits - chest tube out, rebuilt heart, ready to go home.

This weekend will be very, very important to ensure her body heals well and does not accumulate too much fluid. She will apparently be very irritable in a day or two if this occurs. I pray that this discomfort will not come and that we get to the follow up appointment Monday afternoon without complication. For now we are resting at Ruth's mothers house reuniting Kellyn with sweet Evie and enjoying the day.

It was so exhilirating to walk out the door with her and into the balmy, windy day. I can not adequately describe how difficult, intense, and yet amazing this experience is. There is no way you go through something like this as an individual, parent, family member or friend and come out unchanged. Its an experience that cuts you too the core, but exposes great brillance.

Now starts the stressful, yet wonderful steps of recovery. Many, many difficult days to come, but great ones none the less.



Thank you, thank you, thank you.

Post Op: Day 8

Day began beautifully list ening to the hopeful tunes of Michael Franti and Spearhead's latest "The Sound of Sunshine" that my man "Banjo" Dan Doyle dropped off for use last night. Seemed especially poignant for a day of sun and drying up the chest tube. Apparently Michael wrote the bulk of the album while in the hospital dealing with a scare last year. There are lots of great tunes including 'Hey Hey Hey' with lyrics "No matter how life is today, there's only one thing I got to say, I won't let another moment slip away, I hold on, I try to hold on." Also there is a beautiful tune 'Gloria' that feels like it will be Kellyn/Dad's song.

We were given a goal chest tube level of 30cc's by midnight - if she hit that we would move forward with discharge logistics. We would maybe in consideration at about 35, but with a level of 42 with a few hours to go, I think we are destined for a few more days as Kelly's heart continues to heal. Again this just occurs with some kids that it takes longer to heal. They assure us she'll get there, just will take more time. Aside from this wrestling with the chest tube, she is in tremendous spirit and is looking great. Parenting your 3 month old with a chest tube in is about as fun as cutting knee high grass with a push mower, at 5PM in August, with a three piece wool suit on.

Ruth and I, well this picture was taken of us at about 4PM.



We are a bit beat up, are really punchy, squirrely in the hospital and dying to get our girl home. Feels like we are a few days out still. Staff here has been great, especially the nurses. Our sweet nurse Gina has even taken to joining our family dances to help Kellyn take her meds.

Weekend brings a chance to see sweet Evie - and we are both jazzed about that. Our saga continues, check in with me in about 15 years - something tells me Kellyn will be the one we are waiting for as we head out the door...that is quite alright with me though...as long as it takes. Coming home will never have felt so good.

Post Op: Day 7

Kind of a drag of a day inside of Strong today. Kellyn's chest tube drainage is trending up toward 40cc - up from yesterday - which is moving in the wrong direction. There is still hope - and I believe it - that the number will come down in the approaching days. This uptick means we will not be discharged tomorrow for sure - the goal is Friday.

Apparently everybody and everykid is different with this issue. Evie had already been discharged at this point (total of six days in hospital). Kelly's body is just taking her time. My gut and heart tell me she is progressing, and we will be out by the weekend.

Ruthie and I are stir crazy and spent. We get some relief with sleep shifts at the Ronald McDonald House but the time here is growing old - especially trying to keep Kellyn engaged and active while negotiating the uncomfortable chest tube. Its a delicate balance between wanting to make sure things are wrapped as they need to be and also trying to get her out of the hospital before picking up something that will further complicate things.



So tomorrow - think desert - desert dry for the my little girl to help punch her ticket out. Certainly, I owe the world to the good people at Strong Hospital a couple of times over, but it would be nice to firmly close the book on this chapter.

THINK DESERT!

Post Op: Day 6

Today sweet Kellyn excelled. Much more of her old self even while fighting off the discomfort of her chest tube. The most exciting development was what appears to be a substantial reduction in her fluid draining from her chest tube. What was at a level of about 300 on Saturday dropped to 80 on Sunday. Then back up to 120 yesterday. Today she is on pace of about 30 - much closer to an acceptible level. Should this stabilize at a low level they will confirm that fluid is not building up in the chest cavity with a chest x-ray and if it looks good the tube is pulled. The final step is having an echo to check heart function and she can be discharged. Staff estimates that if these things fall in line we could be out of the hospital by the weekend.

The outstanding piece with all this is the level of concern with the build up of chyle I mentioned in an previous post is signficantly reduced. All in all - really great day.



Spent a lot of the day interacting with Kellyn. This included reading books and lots of walks in the stroller (including a sweet trip to the outdoor playdeck for some sun).

Observation of the day on hospital happenings - what is with the level of interest from patients on Court TV - you know the ones with the celebrity judges. Seems like every patient room, waiting room or lounge has folks watching one of these shows? I don't get it. I really don't.

We won today - now we are resting up to wrestle tomorrow to the ground!

Post Op: Strong Day 5

6th day in the hospital, 5th day post op, feels like we've been here for a month. All in all it was quite a positive, strong day. Kellyn had a decent night and awoke rather happy. She greeted the staff with smiles and a few laughs. She is the type of gal whose eyes smile first so when you see that coming you know you are in good shape - and I see that coming.

The assessment for today found all of her vital signs in really good shape. So much so they took her off of the IV drip as well as the oxymeter (the key indicator of how much oxygen her body is receiving). The key remaining piece is the chest tube. Levels still have a ways to come down until she's discharged, though with IVs out it seems to be trending in that direction. The sense is that she likely has some chyle draining out, though the feeling is to have her continue breastfeeding and see how she responds. She seemed to respond positively. Now lets keep reducing that level!

Chest xrays look pretty positive and clear. I brought her down with her nurse for the xray this morning which is always enjoyable. To get a good chest xray on babies they place them in this unit which looks like a torture device. It has a small bike seat and plexiglass that surrounds their body and holds their arms above their body. Evie went in this thing at 5 weeks and it crushed me how rough it was to see her crying. Kellyn cried pretty good in it in pre-op, though today she just sat in it hanging out - the techs were floored - rarely ever see that type of reaction.

Got a chance to roll outside the room with her today as she had even fewer lines rigged up to her - we took her out in a stroller along the floor checking out the scene.

As I sit and write this Kell is settling into sleep in her crib. Her Cuban tech tonight just gave her a bath. I was all for it, though half way into it I realized this style of bath was not the type of soothing one I envisioned. Little bit more agrresive. It almost sent Ruth and I down to the first floor ER.

Things are trending upward - just awaiting Kellyn's body to finish adapting to all its been through this last week. I remain committed to waiting and doing whatever she needs, though man alive are we beat!



Where in the world is Evie? - My sweet big girl has been back in Ithaca starting Pre-K at our local elementary school thanks to assistance from recently retired super Grandma Doyle. Thank you so much Mom - it has been fantastic to have you there. She rolled up to Rochester this weekend and we got brief visits with her. She got to spend more time with her cousins, Aunts and Nona which sounded outstanding. Thanks so much for keeping her engaged. She is sorely missing in our small family meetings in the hospital.

Post Op: Days 3 and 4 - Complications

Post Op Day 3 brought some of the hell that relates to pediatric post-cardiac surgery. The day began decently, but took a significant turn downward when physicians alluded to the potential that Kellyn has a surgical complication known as chyle. It basically manifests itself and a great deal of chest tube discharge because surgery lymphatic tissue that processes fats is damaged and can't process those fats, so fluid builds up in the thoracic cavity (my medical spelling is rough - probably the reason I didn't go to med school - that and a few other reasons). Treatment for this condition is a signifcantly reduced fat diet - tricky for a 3 month old who is soley breastfed. This can extend the hospital stay by a number of weeks! The good news is that as of this morning (Day 4 post op) that drainage went considerably down - though we are in a wait and see at this point. Please, please send your good thoughts for this aspect especially.

The other real special gem occurred a 4AM this morning when it was realized that the IV in her groin where fluids were being administered infiltrated her body, meaning it pierced or moved out of the artery and fluid filled up in her side and groin, SO I had the job of holding my little girls hands and looking her in her eyes as she wailed when they removed the sutured IV and find (after several attempts) a spot for a new IV on her arm (please they did not have to move to the head). Apparantly sweet Kelly's heft does not bode well for placing IVs and drawing blood. The swelling from the liquid is due to go down over the next day or so.

On the positive side - conversations with cardiologists and surgeons were really positive today and she is resting and eating well and just seems much more like her happy self. Here's to that continuing - and working well!

As we sit at her bedside one of books that I pick up periodically is my Green Bible. I admittedly was a bit discouraged and beat up from the evening. I just have been working through some of the Gospels as meditation and will stop perodically, place the book mark and roll on. I open it this morning to where I left off, Mark 5.21, the parable about the leader of the synagogue who asks Jesus to come and visit his very ill daughter. Everyone makes fun of the man for wasting Jesus' time. His remark to him was "Do not fear, just believe." His daughter went on to rise up from her sick bed and walk around. Divine intervention - surely needed that at that moment, even seemed my girl started feeling better after that.

We miss Evie and our home in Ithaca terribly, and really, really want sweet Kellyn to progress in a positive direction. Please think of my little lady, especially in the next 24 hours that this will occur.

Do not fear, just believe.

Post-Op: Day 2

Things are moving - perhaps a bit too fast. Kellyn had another remarkable day recovering in the PICU. Added lines including her carotid line (neck) and arterial (wrist) were removed. She also was taken off of oxygen and has been breathing well on her own. She is shifting to taking meds orally which has been tricky. Ruthie also had the opportunity to feed her yesterday and she did quite well.

Due to a full PICU and the fact that she was doing so well she has been moved out of the PICU and into a post-cardiac pediatric wing. She's been able to rest and sleep in our arms - at moments a very peaceful night - its really been wonderful to see her sleep in our arms. Her oxygen levels continue to remain strong, though she is emptying a significant amount of fluid from her chest tube and this remains the most significant remaining concern. Prior to being discharged she needs to decrease this drainage and of course not have drainage build up in her thoracic cavity.

Continued to be floored by how great the vast majoirty of the nursing staff is. Very compotent and caring. I'm struck by what a noble, intense profession this is. They certainly don't get the credit they deserve for the "front line" work. Having said that, being embedded in the workplace of others is very interesting and difficult. I find it difficult to tolerate some of the personal conversation - albeit with a minority of the staff.

Also, can't say enough about the great staff, volunteers and space of the Ronald McDonald House. We've had the good fortune to spend portions of the last several nights in the house within the hospital - one floor up from the PICU - its been really helpful and outstanding.

Thanks again for the well wishes, food and prayers. It means the world.

Post-Op: Day 1

Sweet Kellyn Rose continues to progress well. Day one of Post-Op found us singing her unofficial theme song to John Denver's Country Roads - "Kellyn Rose take me home to the place I belong..." on continuous loop (for the record this is the only half way decent John Denver tune). Singing seemed to pay off as she cleared the critical first 12-hours post coming of the heart lung machine.

The day began with her connected to a number of things including:

-Ventilator
-Catheder
-Chest tube
-Central IV line
-Arterial line
-Line in groin.
-EKG leads
-Pacemaker leads

As of about midday she was extibated from the critical ventilator and was breathing with just a small amount of oxygen through a nose canula. She also has had the catheder removed. The idea is that over time she will shed more and more of these - when they are all gone she can go home. She's started whimpering a decent amount and has opened her eyes a bit. Her medications have been gradually dialed back and are one by one removed. The idea is to keep her comfortable as her heartrate comes down and she gets more comfortable.

Ruthie had the sweet opportunity to hold her for a bit which while akward with all the leads, was quite sweet. She continues to progress well and the staff is quite impressed with her.

Its been pretty wild in the PICU with a pretty full unit, tight nurse staffing and some pretty rough cases so we have spent a lot of time bedside advocating for the girl and holding her hand. At this point we ask that no one visit because of this.

Thanks so very much for the messages and tremendous support. Its been intense and incredibly meaningful.

Win the day!

Day of the Mighty Warrior

September 15 - day of the mighty warrior Kellyn Rose. There is really no way to prepare for handing your child over for open heart surgery - even if you've been through it before. But we did and she has thrived.

The solid team lead by our old friend Dr. Alfieris hit another homerun in our book. After waiting the four hours of surgery, the good doc came in praising how great she had done. He was also was floored for what a severe case of Tetralogy she had while remaining asymtematic.

She is of course now knee deep in a lengthy recovery, is receiving a great deal of medication and is on a breathing tube, though she is doing quite well according to the staff - heart beat is good, clear and oxygen levels at 100% (far cry from the 80%she was exhibiting prior to surgery). Ruth and I are very proud and exhausted.

September 15 is in a direct tie with October 11, 2006 (Evie's surgical date) as the worst and best days of my life. Thank you to all who have thought and prayed for our family. Now the warrior directs recovery...

The Week of the Mighty Warrior Woman

Every once in awhile you meet someone that you know you could go to battle with. They have 'it'. You know they can hold their own and also inspire a strength in you that you know you have, but don't always know how to exert. Its not what they say - just the opposite - its what they don't say, what they do. Kellyn has it - you can see it in her eyes, feel it in her presence. She is a warrior.

As we prepare this week for one of the great battles of our young family's life - I take comfort in knowing what I know of Kellyn, the mighty warrior woman. She is strong and brings out the best in me. We may carry her a bit, though I'm confident she'll carry us much more.

I'd like to think she gets a lot of that from me, though the reality is I think she gets it from the girl who sleeps in the bedroom next door.

Reset for Next Wed. 9/15

Got the call Friday indicating that Kellyn's surgery has been reset for Wed. September 15th - with pre-op this Tuesday afternoon. Feels good to get a date back and set. Breathe deep and regroup.

Having the week delay allowed us to celebrate sweet Evie's birthday and get her organized for Pre-K. All the girls are looking good and feeling sweet. Thanks for all the well wishes.

Bumped

As we were coming to terms with the September 9th surgery - and looking forward to the opportunity to begin recovery - we were informed that Kellyn's surgery was postponed to a date uncertain. They cited the need for an emergency surgery for a young person out of Buffalo as well as issues with children in ICU who are not progressing well out of the hospital. We were initially very disappointed to hear this information, though have come to terms with it.It certainly makes Evie's birthday and ramp up to school next week a bit easier. We are hopeful that schedules permit for the surgery in the approaching weeks.

K is doing really well as of today. Chubby and very sweet, laughing, even throwing out a giggle recently. A great little lady - beautiful and bound for greatness.

Offering a bit of perspective on waiting for you child's heart surgery just look overseas - http://english.aljazeera.net/focus/2010/08/201082810429993152.html - we are blessed in so many different ways.

M.O.D. - Mother Of the Decade

It can't be boiled down to a brief blog entry. The love, appreciation and admiration I have for Ruthie has surpassed already soaring heights. We've been through the ringer this year, no one feeling that more profoundly than her. From the shot to the gut of hearing for the second time that your child has rare heart disease to the anxiety of a high risk delivery to anticipation for open heart surgery. Intense - not to mention being on the front line for care of that baby along with her wild 3.5 year old sister. I married an amazing woman - who has taught me more than I can ever teach her. Don't think I let a day go by without acknowledging her kindness and care. Tell me I'm not fortunate for marrying a former cardiac rehab therapist who can interpret trips to the cardiologist for me.

With just outside of a week prior to surgery I credit her determination with the outstanding condition that Kelly is in. Mark that up there with the many things I am indebted to her for. Looking back at this year, many years into the future, it will no doubt go down as one of the most difficult in my life, though also one of the most profound, thanks to her. Ruthie - I love you baby - and will never forget the great gifts you've provided to me through our girls.

Profile of a Big Sister

What do you want in a big sister? A virtual Merriweather Lewis, a trailblazer who embraces adventure and isn't afraid to show you the way.



You want someone one of a kind - who embraces and celebrates your uniqueness.



You want someone who is kind and sweet - there before you need it.



Evie - beautiful and bound for greatness - a born big sister.

Just two weeks until Evie's 4th birthday, our transition back up to Rochester, and the surgical date.

Immaculate Conception's Newest Member

On Saturday August 14th, Kellyn Rose was baptised at our church - Immaculate Conception Catholic Church - in Ithaca. Hot, but lovely ceremony at the 4:30 mass by Father Leo with special prayers for her approaching surgery. Thanks so much to family coming in from around NY (and overseas!).



For godparents we chose a solid crew of godmothers. My sister, Rebecca Friedman and Ruth's sisters Becky Owens and Roberta D'Agostino or as they affectionately refer to themselves Flora, Fauna and Merriweather. I felt very fortunate to be able to have had Kellyn baptised at our home church prior to the surgery. Thanks again to all that helped make it happen.

Kellyn continues to do well. Now weighing over 13 lbs. the physicians are pleased with her growth (89th percentile for weight, 68th for height - lengthening out!). Very positive preparation for surgery. She's sleeping a bit better as well for which we are all very pleased. Ruthie continues to do an outstanding job feeding and caring for her each day. Big sister Evie continues to be a handful, but is sweet. Weekly trips from Grandma have helped a ton.



Gearing up for my sister Stephanie's wedding on the Hudson next weekend. Evie has already been working on the dance moves with Kellyn. It's a wild, but beautiful summer.

95th Percentile

Last week we found ourselves back in Rochester at Evie and Kellyn's Cardiologist. In part of the ramp up - six weeks until surgery - we anticipated having to roll up on a bi-weekly basis here on out. Doc was pleased with how she's doing and said he won't have to see her until post surgery. To try and fend off any episodes that might warrant emergency surgery whe have been prescribed a beta blocker to administer to Kellyn three times a day. We are a bit in uncharted waters now as Evie had surgery at 5 weeks old - Kellyn now pushing 8 weeks. She continues to look bigger and stronger than ever. Her weight is over 12 lbs. and is in the 95th percentile for her weight (nice work Kellyn and Ruthie!) and 25th percentile for height. Apparently, that equation is a surgeon's dream for surgery...so keep it rolling. Its getting rough knowing its August and surgery is on the horizon, but there are moments of absolute blinding brillance.

Win the Day

In this summer of great wildness I've constantly reminded myself to concentrate on what's in front of me, today. As a part of that I have embraced the Oregon Football adage "Win the Day" esposed by Coach Chip Kelly. Thought I'd drop him a line this week to let him know how much I appreciated that - outside of football. Class act Kelly hit me right back with the following message.

_______

Scott,

Thank you for your email. I am sorry to hear of the chaos your family has had to go through. It is great to hear that the "Win the Day" mantra helped you and your family push through. My thoughts and prayers are with your family during this time and on September 9th. I look forward to your support in the future. Thank you again for your email.

Go Ducks!

Chip Kelly
Head Football Coach
University of Oregon

_______

Class act Coach - got a kick out of it. I take back the criticism for why you didn't go for it on 4th down in the Rose Bowl. Often small efforts make a world of difference. Pull for the Ducks that much more this year and Win The Day!

SEPTEMBER 9

It is set. September 9th. Date for Special K's open heart surgery. Gearing up for what will surely be a wild late summer lead up. Roch-cha-cha here we come again! As a reference point Evie had her surgery at 5 weeks old (Kellyn's current age) so we will be in a who different situation. At that point she will be 3 months old and her body will be better able to tolerate surgery.

Of course my big girl Evie's 4th birthday is September 8th and she'll be starting a new school pre-k program that week. Something tells me the surgical date is less negotiable than a dental appointment - did't think that "Uh yeah, that's a tricky week can we adjust that schedule my older girl starts Pre-K that week" would work.

Sure I'm scared, but then again very thankful for Kellyn to have surgery that could help her increase her system's oxygen and assist her ability to function "normally". Of course its already very clear that she is not a normal gal. Sassy, wild, gorgeous and bound to change the world.

Please send us and kids who don't have opportunities to have this life saving surgery - www.babyheart.org - consider joining us this fall in coordinating a fundraising effort for these folks. More details to come.

Mighty Warrior Cardio

Last Monday found Kellyn, Ruth and I back at the cardiologist for a scheduled appointment. Although I would have loved to have heard them say - "I don't know what you've been doing with her care at home, but you've mended her heart" - what we did hear was fairly positive.

She still has pretty rough oxygen levels as is expected with Tetralogy of Fallot, though she appears to be tolerating things very well. Since her last cardio appointment she gained over a pound and a half and as we can attest she is feisty as all get up. These two items will certainly bode well for her for surgery.

They anticipate discussing her case at surgical conference either the Thursday before or after the 4th and pull together a schedule from there. Our cardiologist, Dr. Gaum (real solid guy), anticipates a likely Fall surgery. Who knows though things can change pretty quickly on hospital schedules.

We are about two weeks out from the age when Evie had surgery (5 weeks old)which we've come to realize is quite early. As solid as Kellyn (Special K) is I struggle with thinking of her little body going through this intense procedure. I have confidence in the team in Rochester though and pray daily for my girls and their heart health.

Another fantastic item to note is that genetic tests came back indicating that Kellyn does not have a chromosomal 22 defect that some of the physicians alluded to a likelihood of her having. It includes a whole host of complications including Tetralogy of Fallot. Doctors continue to be floored by the fact that we have two children with the condition. All but one we have seen have never seen it in siblings. One cardiologist said it best in that pretty much every ailment we wrestle with is genetic - we just don't know exactly how. Just lucky to have these distinct ladies beautiful and bound for greatness. They are so very lovely, but incredibly trying to manage.

Ithaca is Gorges

Ithaca is Gorges - especially on Father's Day with my ladies. Its been hot and trying back in Ithaca getting used to the rhythm of work, 2-children and the heat. Ruth and Eve grabbed me some special breakfast and the NY Times and rolled out for a bit of time at Robert Treman St. Park for the day (by far the region's most superior playground). Kellyn continues to gain weight (8#6oz at last appointment), but is still getting used to the day to day. I'm hopeful things fall together this week.

Its great to be back in familar territory. Being able to walk downtown and see old friends has been excellant. Much thanks to all the great food, calls of support, visits from Mom, etc. Its a great time to be a Dad, but man alive is it trying too

Reflections on a wild week

Had a decent cardiology appointment today which gave us the green light to plan our return to Ithaca prior to surgery. Kellyn still has a very classic case of Tetralogy of Fallot with a tight pulmonary system. The main problem with this is that it prevents her from distributing a normal amount of oxygen throughout her body. She continues to gain weight (11 oz. in 4 days and looks good. We'll be seing the cardiologists every two weeks in Rochester to track her progress and set a surgery date. The team will meet in the approaching weeks to discuss her case in greater detail and chart the specific course of action.



For now we are packing our bags and leaving the comfortable confines of our families in Rochester. Thanks to Rose, Dan and Diane and all the extended family in Rochester for their assistance and support this last month. We really look forward to returning to Ithaca and will not soon forget all the great help from everyone in Roc City!

Its been an intense week - Kellyn now over a week old. I feel like I've known her my entire life. At one moment I feel awestruck by her (and Evies) strength and beauty, and another I am frustrated beyond belief for what they must endure. Its been rough, but great at the same time.

One of the things that has struck me about difficult situations like the one we are dealing with is the distinct sincerity that people interact with us (when the choose to interact). Certainly there have been some inappropriate comments (I understand that people really don't know what to say to someone who has two children with major heart concerns - and I prefer this to not acknowledging the situation at all) but this really brings out the best in people. Most everyone has wrestled with a difficult situation that makes them feel helpless. I've been taken by the number of folks who have dealt with major medical issues and have shared those stories with me. I've appreciated those stories - thank you - and believe living through these things hurts but places a renewed focus on the present moment and items that we do have control over.

Reflections on spending time in the 60-baby Neonatal Intensive Care Unit at Strong...

Transcending the NICU

Babies of all sizes and colors,
ailments varied as much as approaches.
Glassy-eyed parents holding bedside vigils or in most cases sadly absent.
Stimulation overload of alarmed machinery attached to wrapped blankets inside isolets.
Nurse chatter and wild shrieks of children who should be cooing.

Reflections on having a baby in early summer (especially this summer)...

Weather is great and with World Cup running strong I can barely think of a better time to be hanging with a newborn.

Dicharged

My Girls Away From the Hospital

First big hurdle cleared - Kellyn was deemed healthy enough for discharge until a surgical date is set. And we returned to Grandma Rose's house on Thursday afternoon. Evie joined us later that night. Kellyn is really doing well and is getting into the rhythm of eating, sleeping and filling diapers. She is doing remarkably well. We'll remain in Rochester through at least next Tuesday for her follow up cardiology appointment. The initial thoughts are for an earlier surgerical date.



Big Sister and Little Sister

Today things are looking absolutely beautiful. Love seeing Evie interacting with Kellyn and really enjoy being able to hold and care for her without tubes or leads. She's strong and impressive. Still feels like walking on eggshells though. We are focusing in on getting her stronger and trying to figure out how to mesh the schedules of baby and Evie.



Host Grandma Rose and Sweet Kellyn Rose (almost exactly 3/4 a century divides them)



Grandma Doyle and Kellyn - Instant Friends



Grandpa Doyle Now a Veteran with 3 Grandaughters