Doctors' visits

We visited Coley's cardiologist and pediatrician last Thursday. All reports are good! They both say he looks, sounds, and acts healthy! We are SO happy about that - he's doing better than we could have ever expected.

Because he's eating well, gaining weight, his blood oxygen level is at an acceptable level (it's at 86 - lower than a couple weeks ago when we took him home from the hospital but still within a normal range), and his lungs sound clear, the cardiologist is happy and we don't have to go back to see him for three more weeks. He didn't even feel it was necessary to look at the heart with an echocardiogram - he could tell what he needed to tell by his behavior, color, and weight gain. Looking forward, this basically means that as long as his color remains good (he's not cyanotic), he continues to eat well and gain weight, and his energy level is enough to allow him to eat enough, he won't need surgical intervention for several weeks or months. We're hoping that he continues to do well for at least 8 weeks, then he won't need a Blalock-Taussig (BT) shunt or a balloon inserted via catheter to expand the pulmonary artery. Instead, if he can wait until 2 months old or so, he would have a Glenn procedure. The superior vena cava (SVC) bringing blood back from the head and upper body is taken off the heart and reconnected directly to the pulmonary artery (PA). If I understand things correctly, this will mean that this blood goes directly to the lungs from the new SVC-PA intersection, rather than going through the heart first, which alleviates some of the burden on his one ventricle that pumps both to the lungs and the body. See this website for more info on that procedure and the next one, called a Fontan procedure, which does the same thing, but with the inferior vena cava (IVC).

Then we were off to our pediatrician. She also says his color looks great and that he has great muscle tone and reflexes. She also successfully gave him his vitamins, which he has been completely rejecting until now. She used the pacifier after every few drops. Great trick!

He's been sleeping pretty well for 2-4 hours at a time (mostly 3-hour stretches). Now, however, we're starting to struggle with gas that seems to cause him discomfort. We're working on perfecting our abdominal massage and leg-bicycling techniques, and I've stopped eating cruciferous vegetables and legumes - bummer! But it seems to be improving. Let's just hope that as we approach 3 weeks we don't encounter colic... or any otherwise unexplained screaming/crying...

Rollins

Ok, so I'll have to confirm some of the details, but here's the quick version of the "Rollins" story. My grandfather Marvin Rollins was born Marvin Rosenfeld (lest ye doubt my Jewish heritage...). In the 1940s he applied to medical school in Ohio. Applying as Marvin Rosenfeld he was rejected multiple times. He knew this was bigotry at work, so he decided to change his name to something less obviously Jewish. The story I always heard was that he saw Collins Street on a map, but wanted his initials to remain the same, so decided to change his name to Rollins. As Marvin Rollins, he was accepted to medical school and became a successful doctor. There ya have it: the sad, but true and interesting story of my maiden name. So, should he be Coley Rosenfeld Wells? Yeah, we don't think so either.


Here's me with Marvin.................. here's my dad with his dad.

Here's me with Laura Rollins - Nonnie - who's having a lot of trouble remembering that I've made her a great grandmother, not just a grandmother, as she says whenever we talk on the phone.

Here's my dad with Coley.

Why "Coley"?

This oil painting of a school of fish hangs above my desk and is one of my favorites in the world. My great grandmother, Mildred Lawrence Coley, painted it when she was 93-years-old (she was born in 12/19/1892). She was starting a new hobby! I was 10-years-old at the time. I got to know Mildred pretty well, as she lived to be 100! I remember her as a large, kind, forward looking woman with a big smile who was curious about me and my life.

I've always thought "Coley" was a great sounding name and luckily Anna agreed! We might have called our dear boy "Kitchel" after my other amazing, 100-year-old great grandmother - the green-crusader Helen Binney Kitchel! Or after Helen's father Edwin? "Ed" Wells? Or her son "Tim" Kitchel? Or then there was Robert, Wyatt, or Jasper? Those don't have the perfect ring to it them way Coley does. So it was decided! Coley Rollins Wells.

I didn't know Mildred Coley's husband Clarence (born 12/1/1877). He always seems so kind and gentle in photographs. You can see him below as a young man (looking much like his amazing granddaughter Binney - my mom) and then later in life with Mildred. Clarence was an mechanical engineer who invented the blind shaft elevator (which skips the bottom floors) and designed and managed the mechanical side the Equitable Building which was the largest building the world for many years. It was later passed by the Empire State Building in 1931.

So that's a tiny bit of the history behind the name Coley. Next, Anna will have to write a post about Coley's middle name "Rollins." It has a fascinating past. In fact Anna's grandfather Marvin invented the name Rollins in the 1940's.

Clarence Coley circa 1900. My great grandparents Clarence and Mildred Coley circa 1950.

Coley update and new pictures

Hi everyone! On the eve of Coley's 2 week birthday, here's an update and some pictures. Coley has put on about a pound over the past 10 days. He was born at 7lbs 6 oz, went down to about 7lbs, and is now at 8lbs 2oz! He's eating like a champ (he eats whenever he wants, which is about every 2-4 hours) and growing fast. All our nurses and doctors are very impressed with him.

Ted is home on paternity leave for the rest of this week, which means he'll get to see him grow and change all day, every day for 6 days in a row!

Here are the pictures (the first one's my favorite):


He practices smiling in his sleep.


Precious.


The Full Monty!


This is how he spent his first Patriots game.


Hunh?

He loves his Pa and his Pa loves him:


The "jaguar" position.

8 pounds 2 oz

Show us those big blue eyes!

With Daddy...

With Auntie Hylah and Grandpa Bob (taken last Sunday, 9/7, a mere 4 days old!).

An email from Pa

I am so glad to share with you a letter written by Coley's Pa, Ted's dad, on Saturday when we came home. We are touched by the thoughtfulness and thoroughness of this email and appreciate his willingness to let us share it on the blog. We are all so lucky to have a dad, father-in-law, and pa like Bob. To say 'we love you' is an understatement.

Many of you have heard the good news that Coley went home today with Ted and Anna. This is truly good news because the surgery, if one was required, was a most serious one. Binney and I were fortunate to be at the hospital with Dr. Marx, the pediatric cardiologist, when he came to see Coley. He spent one hour with him and with us. And has been back many times. He performed an echocardiogram (others had been taken after his birth) in the room and determined that the heart was strong and the blood/oxygen level (and other matters far beyond my comprehension) was appropriate. It was what he had hoped for, and more. As a result of that determination, a decision was made to send him home today. We are still faced with two surgeries. One in about 6 months and another in about 2 years, although those surgeries are less serious than the first one, had it been required. He has a congenital heart defect with only one ventricle (you are supposed to have two!) and surgery will be required to allow Coley to lead a normal life. There will be few limitations on him during his life. Dr. Marx indicated that contact sports probably were out but soccer and other kids' activities would certainly be consistent with what he would want to see Coley do. In other words he will be a normal kid and grow up to enjoy a normal life. What a relief! I inquired as to how many babies have what Coley does. And he indicated that about one in ten thousand suffer this problem. And Coley's is even more unusual than most. Childrens Hospital is a wonderful institution where people come from around the world to seek this type of medical care. And we have been blessed by Dr. Marx, the staff, and all the wonderful people who make Childrens the best hospital in the world for complicated health issues. What wonderful news to share with you.

When the surgeries occur, the chief of pediatric cardiac surgery will perform those operations. Anna's father, Barry Rollins (note Coley's middle name!), and his wife, Jane Weeks, (both oncologists at Dana Farber) have been most helpful in making sure that Ted and Anna saw the right doctors and other staff. Their visits with us and with Dr. Marx gave us the comfort that all was being done that was humanly possible for Coley. Anna's mother, Mary, has been an inspiration as well. We enjoyed long visits together as we shared the birth of Coley, and the resulting news about his release from the hospital.

I also had a big surprise when I went to Ted and Anna's house. I had been unable to see the nursery before Coley was born. And when I walked into the nursery room, I saw this amazing wall drawing. It is the view from our kitchen window-the red barn, Mt. Kearsarge, the long hay field, white fences, and trees. Simply breathtaking. And done to perfection. It wraps around the whole room. Ted had done this for Coley, wanting him to experience what he did as a young boy. And needless to say Binney and I were overwhelmed with the thought behind the creative work Ted had performed to honor us and to entertain Coley.

I am sure there will be more news. You can go to Ted and Anna's website (www.tedannawells.com) and link on to their blogs for pictures and updates as they add them.

Binney and I want to thank all of you for your wonderful support throughout the last few months, and certainly the last few days. Without your prayers and good wishes, it would have been difficult-no, it would have been impossible. Thanks, again for your love and friendship.

Bob

Here's a picture of the room:

Home Sweet Home...

A beautiful sunny Sunday with our new son! What a joy and a relief to be home. I have never appreciated the concept of home quite as much as I do right now. The fresh air is amazing, even though the humidity is oppressive. After 3 nights in the hospital, we arrived home around 3:30 yesterday afternoon, just as he was turning 3 days old. It was a meal for baby and a nap for the three of us. Then my awesome mother made us a nourishing dinner, which must have made Coley hungry again. Overnight was a challenge - not much sleep for Coley, but fortunately he has a superstar dad, who walked laps in the kitchen from 3-6am before he finally seemed hungry again. Those three hours of sleep for me were amazing.

Anyway, we are overjoyed to be home. He is on the couch next to me here, falling asleep after about a half hour of eyes open, squirmy time (with no fussing!). We look forward to a first walk, first bath, and more sleeping, eating, pooping, and experimenting with different types of diapers. He's wearing his first cloth right now - exciting...

And Ted's sister Hylah is here for the day cooking for us, doing whatever we ask her to do - she offered to scrub our bathrooms! Right now it's Ted's request: chocolate chip cookies. We're so grateful for your presence, Hy. Coley loves you already.

More updates soon. All is going splendidly!

Photos

Here are pics of proud grandparents, our amazing doula Tara, helpful doctors, our first hour at home, and one of Aunt Hylah who arrived this morning to help out! Thank you to all for your love and support! Coley is so blessed to have this network of friends and family thinking of him.

Coley's first night at home included many big meals (one feeding lasted over an hour) and a few long walks around the kitchen/livingroom/house with Dad. Right now he's napping to my left on the red couch. Such a peanut! "Peanut" is the perfect word to describe babies. We love him dearly.

GOOD News!!!

I am so happy to write that two hours ago Anna and I got the following news:

The best case scenario has worked out for our dear boy Coley. His heart is very strong and the balance of blood going from his one single ventricle to the lungs and body is just right. He can skip the first (and most risky) "shunt" surgery that was to happen next week. We can bring him home tomorrow or Sunday! A huge weight and stress has been lifted.

His malformed heart is doing just fine on its own right now. He is pink, active, and happy. We were to have waited 4 days to see if the PDA valve would close for a final test, but it happened early. And he's still fine.

He will need heart surgeries at about 6 months and at 18 months, but they are less risky. His chances for a 'normal' life are much higher now. I can't even begin to explain my emotions right now. The longest two days of Anna and my lives are starting to speed up and we are feeling so much better.

Coley and his Mommy

Meet Coley Wells!

Exactly 24 hours ago, Coley Wells was born, and we are so overjoyed to share him with you in the photos below. He was born at 3:33 9/3/08. Weight: 7lbs 6 oz. Length 20.5 inches.


Anna was absolutely amazing doing her 10 hour labor completely naturally. I cannot begin to describe how inspiring she was or how magical it feels to become a father. Perhaps the photos do a better job of that.

Coley heart is off to a good start. The first 48 hours will say a lot and the first 3 or 4 days will determine if he'll need the first of three surgeries (he will need the 2nd and 3rd we know already). He's very cute (everyone says that here at the Cardiac Intensive Care Unit at Boston Children's Hospital). He's been steady with very little fussing even when being poked and prodded.

We'll post many photos here in the upcoming days and will let you know about his progress. This space will let us communicate with all about our dear boy without having to contact everyone individually. You can find as much detail as you'd like here, or just check out the pics.

No news isn't always good news...

Urgh. Here we are, August 31, my due date, and no action. Not that I realistically expected to go into labor the moment the calendar turned, but still... this date has a flashing neon sign in my brain for 9 months, so it's kind of hard to see the hours fading away.

On the upside, I'm feeling fine. Uncomfortable, yes. Want to get this baby out, yes. Am going slightly mad with anticipation, yes. But nothing major to complain about.

Just thought I'd let you all know. We'll keep you apprised of any developments!

Pregnancy update

Not much new to report... just waiting, waiting, waiting. Had a visit with my OB Monday afternoon. He reports that I'm 1/50/0. That is, I'm 1 cm dilated, 50% effaced, and at 0 station (look it up). That's progress - I was 50% effaced, but not dilated at all two weeks prior. So that's my status.

As for the baby, he's doing great! I had the ultrasound portion of a Biophysical Profile (BPP) test on Monday, also. This is just an ultrasound where they take measure of 4 things and give him 0-2 points for each: fetal body movements, muscle tone (flexing of the arms and legs), breathing movements (moving his chest muscles and diaphragm), and an adequate amount of amniotic fluid. They've done this a couple of times over the past 6 months, and he ALWAYS scores 8/8 - A+! Of course he does - not only is he my son (heh!), but everything works just fine while he's on the inside.

I've also had the other portion of a BPP twice - the Non Stress Test. He always passes that with flying colors, too. Basically, there are two monitors strapped to my stomach, one measuring the baby's movements and heart rate, the other measuring contractions. Healthy babies respond with an increased heart rate during movement, and the heart rate decreases at rest. The heart rate should also remain steady or increase during contractions. The concept behind a non-stress test is that adequate oxygen is required for fetal activity and heart rate to be within normal ranges. If the heart rate drops during a contraction, it may be a sign that that the baby's oxygen supply is compromised. A good result is a "reactive" result, meaning that the heart rate correlated in the right direction with movement and contractions. Make sense? You can find out a ton more about these tests by good old Googling.

By the way - he's had hiccups while writing that last paragraph. Kind of an annoying feeling, but normal and a sweet reminder that he's there.

So, because of the long weekend, I have two appointments scheduled, one tomorrow (Thursday) and one next Tuesday if I'm still pregnant (that''ll be 40 weeks, 2 days, but who's counting?). The testing is frequent now I guess to make sure he's born in as strong a condition as possible. Tomorrow morning I'll have another BPP, and if all is normal, I won't even need to see the doctor. Tuesday will also be an U/S, then a visit with the OB to get see if I'm progressing towards labor. At that point, he wants to begin discussing the "I" word. Aaaah! I really don't want to be induced. I don't have any numbers or data here, but I have heard that induction can lead to longer labor, stronger contractions (therefore more likelihood of pain management drugs), and higher likelihood of birth by cesarean section. No thanks. SO, I'm hoping he's ready and wants to come within the next week or so. They'll want to induce if he hasn't come naturally by the 41 week mark. BUT as long as the baby and I are still doing well, I'll definitely push to wait until 42 weeks, or at least in that 41st week.

So... I'll write again soon with an update. Let's hope it's with news of labor!

Ted in the Boston Globe - "Head of the class"

Check out Ted's contribution to back-to-school time this year. We hope to be as green as parents as Ted is a teacher and Anna is a planner.

Head of the class - The Boston Globe

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Fatherhood

This is my favorite song. The perfect song. "August 1986" by Tom Smith, one of my Park School colleagues. Every time I hear it, I'm reminded to get off of my computer and get outside to enjoy nature.

As a soon-to-be father of a son, this song takes me even deeper. I become a father in 4 to 6 days, and the thought in this song of canoeing with a son in our beautiful world inspires me beyond all else. It's my dream. I can't wait to share our world with him. And to rediscover it, as I discover and love my boy.

Listen to this song, then go canoeing or for a walk with your sons and daughters.

BY WAY OF INTRODUCTION...

I never wanted to write a blog. Never, not ever. The commitment to posting, the sharing my life with strangers, the sharing my life with people I know (!), the time sink of getting it to look just right... But now that I'm about to embark on the most exciting, rewarding, fulfilling, emotional endeavor of my life, I can't get enough of sharing it with friends and family. I still can't say that I'll be able to hold up my end of the commitment - regular, engaging, well-written updates - but I'd like to, so I'll try.

So, here's the scoop: it's the end of August (a mild one for New England, thank goodness), and I'm 39 weeks pregnant. I'm SO ready to be done with this part. Ready to upgrade: trade in the bump for a baby. I have all sorts of apprehensions about the next few weeks.
Will I be late? Go to 41 weeks? With all my being, I hope not. If I'm late they'll probably induce me, which I know I do not want. Plus, that means two more weeks or longer of the discomfort and sleeplessness of the end of pregnancy.
What will my labor and delivery be like? I want a natural, mindful childbirth, but there's no way to know how my body and mind will respond to labor.
How will our baby boy fare when he enters the world? We know he has a heart condition and that he'll have to spend his first few days in the Cardiac ICU; we found out at 18 weeks that only his left ventricle is fully developed. Despite increasingly positive news to the contrary at each cardiology visit, it's possible that he'll need open heart surgery within a week of birth. Then regardless of whether he has an operation right away, we know he'll need two more procedures at 3-6 months and 18-24 months to make his heart function well enough to survive. So, yup, all that is terrifying. (The defect is called single ventricle heart, and we'll write more about it in other posts.)
And there are all sorts of questions that go along with not knowing exactly how he'll do once he starts breathing: How long will he have to be in the Cardiac ICU? What medications will he have to have in those first few days/weeks/months? When can he start feeding? Will he have trouble breastfeeding due to decreased stamina? When can we take him home? And on and on...

All that aside, we are so, so, so excited for our first child to arrive. We have both been dreaming of this for years. And we are so grateful for our friends and family who have been and continue to be so supportive of us and our baby bear.

We'll keep you posted! Get it, "posted?"