14 Pounds, 4 Ounces!

I'm 14 pounds and 4 ounces and doing great. Look at how my belly hangs over my diaper. Sweet. I've almost doubled my birth weight in under 4 months. - Coley

(This photo is two weeks old, so I'm actually much chubbier now.)

Coley's first nap in the crib!! And other updates...

This is SO amazing. Coley just fell asleep nursing up in his room and I thought I'd experiment by putting him down in his crib, fully expecting him to wake up and not want to sleep - he's not a great napper, as some of you know. Well, just goes to show me... he's still sleeping 15 minutes later!! So I have time for a quick post and update (I hope. Who knows, this may not get posted for days if I don't have time to finish it.).

On Wednesday, December 3, Coley's 3-month birthday, he had an echocardiogram. The doctors wanted to get a good image of what's going on in his heart to help determine when to do the surgery. Fortunately, no surprises were revealed to us, and our cardiologist's assessment from listening and looking at him was spot on. Coley has enough and not too much pulmonary stenosis (narrowing of the pulmonary artery as it leaves the heart and goes to the lungs) to make the pressure in the heart just right to get the blood out to the lungs without flooding them. Confusing, I know, and I'm not sure I totally follow it all myself.

It suffices to say that we still don't know when the surgery will be. The cardiologist is conferring with the surgeon about the imagery and the surgery schedule, and will set a date in the near future. There's also a possibility, if they don't have enough information from the echo, that Coley will need a catheter procedure to get more accurate measurements of the chambers and vessels and the pressure in and around his heart. I think we're still shooting for January sometime for the Glenn (at around 4 months of age), but Coley's condition is safe enough to push it back to February or even March, if he holds steady. They won't go much past then (closing in on 6 months old) to do the procedure, though.

The good news is that Coley is now up to about 14 lbs! The cardiologist said that he is the largest baby they've ever had going into the Glenn. Amazing... both the cardiologist and Coley's pediatrician made jokes about my milk being cream. It's at least whole milk... none of that 2% nonsense.

Speaking of milk, though, I can't drink it! Nor eat cheese (wanh!!), nor yogurt, etc. And no beef items, either. Coley's pediatrician thinks he may have a sensitivity to casein, a protein in dairy and beef. Apparently this is fairly common for nursing babies. We saw a few flecks of blood in one of his diapers two weeks ago and called her right away. This was her assumption, and so I cut out dairy and beef. So far, so good. No more blood, and, surprise (!), less fussiness! Casein sensitivity can cause colitis - inflamation in the intestines - must have been pretty uncomfortable. I think I can still do goat dairy, though. Good thing, because I might as well not go on living if I can't have goat cheese.

So there are the major updates... Coley's starting to stir, so I gotta run. Hope I didn't give all that info short shrift in my rush to get it all out. Just comment or email us if you want to know more!

"Woah... what is up with this girl... she can hold a toy?!"

That's exactly Coley's expression in this first picture. We had a lovely visit today from our friend Nell and her daughter Molly (7 mos). Molly enjoyed Coley's toys quite a bit. It's really fun to have a sneak preview of what's ahead for Coley. That "sitting on your own" thing looks really cool... (and back-saving!).

No Shunt Needed

We had another positive heart doc appointment this morning.

Dr. Marx was very happy about Coley's continued growth - 13 pounds (50th percentile), 24 inches 50th percentile), his pink color, and overall progress. Most happy I've seen Dr. Marx, in fact. He said it's earlier than he thought it would happen, but that Coley is now safely past the potential need for the 1st, most risky surgery (a Blalock-Taussig shunt or balloon dilation of the pulmonary valve). So that's good news. Basically, if Coley should need higher blood oxygen levels to properly develop (which he doesn't, yet), he could now go strait to the 2nd surgery, the Glenn procedure.

His oxygen saturation level measured 81% today. Only down 1% from two weeks ago. But going down steadily as predicted.

The Glenn surgery will probably happen around 4 months or age or January 3rd (give or take two weeks).

Coley on YouTube

Incredulous...

Coley's 2 month birthday was November 3rd! It's truly amazing to me that so much time has passed. I'm incredulous...

...that this is my life! I have a baby? I'm a mom? Really???
...what a great dad Ted is.
...that Coley is doing so wonderfully well given the challenges we know are ahead.
...at the quality of medical care we are receiving (thanks in large part to my dad. Thanks Dad!).
...at the incredible sanity-preserving support and help I'm getting from my mom.
...at his growth and development - in just 9 weeks he's grown to 23.5 inches long and 12 lbs!!
...at his beautiful eyelashes! They're coming in long and brown. (Will his eyes stay blue?)
...at his sweet, sweet, heart-melting smile. Makes it all worthwhile!
...I could go on, but I won't.

As for heart news, word is that Coley will have the Glenn Procedure at about 4 months old. That's probably sometime in January. We had been thinking it would be between 3-4 months old (December). It would be nice to do it before the holidays - to do away with the anticipation before then, but of course we want to do it whenever it will be the most beneficial and most successful for Coley.

I'll post some more pictures and maybe some video soon. He's changing so fast!!

Thanks for checking in...

7 weeks old! (Also, a tribute to the grandma)

Wow - nearly 7 weeks, Coley!! You're a beautiful boy! We love you!

Despite a lack of sleep and a vast increase in laundry, the past nearly 7 weeks have been just so incredible! Watching Coley grow and change and begin to interact with us brings me indescribable joy. These past weeks have been made so much more wonderful by the help, love, and support of our friends and family. One person in particular has been present and helpful beyond compare. Whatever name she ends up being called by - Grandma, Granny, Grammy, Meemaw - my mom has been a true lifesaver. And I just love watching her with Coley - her love for him is clearly abundant.

So, though it's a meager attempt, I want to thank her with this post. Thank you, mom. Coley and I love you!

West Rattlesnake Mountain

What a great weekend to be in northern NH!!! Today Mary, Anna, Coley, and I hiked up Bridle Path to West Rattlesnake Mountain. Amazing views! PLUS Coley is now smiling on occasion. When he responds to you and smiles it just melts your heart!!

Of hearts and smiles

First, a quick update from our doctor's appointment yesterday: Coley is still doing great! He had a normal EKG and his oxygen saturation level was measured at 84%. Lower than yours or mine, and lower than 3 weeks ago, but still high enough to allow us to hold out on intervention for a bit longer. The doctor and nurse said he looks great and at ease (as opposed to struggling to breathe or eat). Our doctor gave him the "Cutest baby of the day" award. I couldn't help but to agree. So now we just continue the waiting game. We're hoping to get to at least 8 weeks, preferably 12 or more, without seeing too much change. That way Coley can skip the first, most risky procedure (a shunt or balloon valvoplasty) and just have the Glenn surgery, which has more certain results. So there's the update from the medical side.

In more fun news, Coley has started smiling - while awake! We've been on the lookout for this since seeing our friends' new baby (who is two weeks older than CW) smile at us. It was SO freakin' cute. We are so excited for it to become a more regular occurence - now it's just once or twice a day: once when his grandma (my mom) comes over in the morning and once when his daddy comes home and puts him to bed. No, I don't get smiles yet. I don't go away and come back like they do. Here's a picture I hurriedly took with my cell phone last night.

TWO NEW POSTS! 2 of 2: Cabin Weekend

Coley, Anna, Penny, and I had a great weekend getaway with Nana and Pa to Great Grandma Kitchel's cabin in northwest CT. The weather was crisp and clear, though the leaves were not very colorful. The streams are high and our work last fall dredging some of the pools sure paid off. They're gorgeous! The big event was taking Coley on his first hike on Saturday. We went to Tim's Point of View then Bob's Cliff. Coley's a strong hiker (just like his mom, who carried all 9 1/2 pounds of him) and his favorite season so far is fall (just like his dad).

Anna, Ted, and Coley at Tim's Point of View.

Nana and Pa on Bob's Cliff.

TWO NEW POSTS! 1 of 2: Coley by the numbers.

My, how time flies! Coley turned one month old this week - whether you measure by 4 weeks or from September 3rd to October 3rd, he's a month old!! To celebrate, our friend Liz (one of Coley's many aunties) visited in the morning on Friday. Then the visiting nurse, Linda, came to see Coley. He weighed in at 9lbs, 7oz! Big boy! Up 7oz from Monday. We'll see her again tomorrow, I think, and I'm excited to see how much he's grown.

Another nice development is that three times now he has slept for 4 hours in a row! It's usually the 11pm-3am shift. Keep it up Coley boy! Momma needs the sleep!


Coley and his crazy uncle Sandy ............ Coley and his Great Grandma Nancy.

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.