Friday... and going home?

While Coley is happily playing with my mom and his Sesame Street balloon, I wanted to update you on what's been going on today.

He slept fairly well last night. Down at 9pm, then up at midnight and 4:30 for comfort and to nurse. That time he stayed up for a good hour and a half before finally falling back to sleep. But then slept until he needed his meds at 8.

He was doing great for a few minutes when he woke up, but then, of course when they wanted to come in and do an echocardiogram, which he has to be really still for, he got really cranky and gave the echo tech and Dr. Marx a bit of a show. Made a liar out of our nurse and Dr. Marx who both told the echo tech that he was "a really easy going baby." Funny... But they did do the echo and it looks good: good function and flow. My mom took him down to x-ray, which will show whether there is fluid buildup around the heart or lungs. I think they were not going to do the x-ray, but he was doing a little grunting breathing this morning in front of Dr. Marx, so he said to keep it. Not long after the doc left, though, he had a HUMONGOUS poop. And stopped struggling! Of course...

They also just did another blood draw to check white blood cell count, which was a couple points high yesterday. That could indicate infection, but he has not had a fever, which would also be a sign of infection, so they're not too worried about it, just doing it as a precaution. Hopefully the results of the x-ray and CBC are good. Then we'll be able to come home this afternoon! Of course I'm a little scared for us to be alone with him, no computer monitoring his breathing/heart rate/sats, but it will be nice to all sleep in the same place comfortably again.

He's being really good right now! Maybe he'll take a nap. Me too. I'll let you know our discharge status or any other test results as soon I find out.

Oh, and thanks to all our visitors yesterday and throughout the week. We've had many! It is wonderful to feel so loved and cared for. Thank you.

Good afternoon!

I thought I'd write a quick note since I can sign in at the moment... it's still spotty.

He's having a nice afternoon so far. He had a bit of a rough morning, starting with peeling off his bandages - ouch! - followed by a blood draw and just being poked and prodded a bit. All that combined with being exhausted made for an hour-long crying session. But he finally slept for a couple hours while my mom stayed with him. I went home, showered, grabbed different clothes and food, and returned to find a smiling, happy boy! And my sister-in-law is here; it's great to see her!

They told us we would be going home tomorrow or Saturday. I hope he is doing well enough to be let go.

Ok, more visitors are here - another update later.

He's himself again!

Grandma (Mary) here; I had my camera ready when he woke up yesterday. No more tubes, no more drug-induced sleep. I haven't heard yet how last night went, but these pictures (a mere 48 hours post-surgery!) are worth thousands of words! (I have some little videos, too, but they were taking too long to upload, so I'll try again later when I have a faster connection.)

Step down!!

I'm writing to you from the general recovery ward, or "step down." This is a wonderful transition for so many reasons; first of course is that Coley is no longer in intensive care, is healing wonderfully, and progressing towards going home! As I write, he is cooing and playing with his daddy and two grandmas.

Another great reason to be here is that I can FINALLY log into the blog to post for you!

Our cardiologist came to check on him a couple hours ago and said that he'll probably go home Friday or Saturday. Of course not until he's ready, but he's on the quick road outta here. We're all saying that he seems like he's pretty much back to his regular self. He is still on some pain medication that's making him a bit more sedate than usual, but he does seem alert and he's playing with all sorts of things - we'll post some video soon.

I have some writings from yesterday (Tuesday) and this morning that I'll post explaining some of what has happened since we posted last on Monday evening.

3/4/09

Another beautiful, sunny, good morning. Coley had his chest tubes removed last night. He was a super champ for it all. Granted he did have a morphine cocktail, but the nurses said he’d get upset, but really he didn’t for long at all. Lucky Nabia and Scotland got to see it all… they showed up for a visit just in time. Pat and Dan came for a visit just after that, so they got to see a tube-free Coley. Except for the nasal canula with oxygen, he had only the IV in his foot, which wasn’t even connected to anything, the three stickies on his chest to record RR and HR, and the red light glowing O2 sat monitor. Pretty good after having so many other IVs and tubes in him just a few hours before.

He had a great night last night, woke up a few times, but was able to be calmed back to sleep. I got to nurse him, too… he seems to be back to normal in that department, at least! Hungry, hungry hippos…

Good morning!

Good morning. I came home last night so Anna could stay with Coley. I just talked to her and he had a second smooth night and is doing well. Phewww.

They pulled out the two chest drainage tubes at 6:30PM yesterday...tough little Coley almost smiled during the process as not-so-tough daddy almost fainted! So he's almost completely off the machines. Just monitors now. Anna's been able to hold him. In fact I just called her and she was breast feeding! He's also not as drugged up now - just pain meds now.

I can't type here long as I really need to get back to see them, but wanted to thank everyone for their amazing love and support. This has been a very hard time for us as you can imagine, but it's been made easier by so many of you. Most of all it's been made easier by brave Coley doing so well!

We're sorry this blog isn't accessible from in the hospital as we wanted to post more info for everyone, but none of that matters - Coley is doing well - that is what matters.

We're moving him out of CICU today!

3/3/09 (happy square root day!)

Good morning, friends! Happy Half Birthday, Coley!!!

It is a great morning: sunny, crisp, Coley’s awake and has had two bottles. He’s still uncomfortable (that’s probably an understatement), but is on some heavy-duty motrin via IV to help with that. They think that after the Glenn procedure, the patient has a wicked headache due to increased pressure in the head (as the resistance in the lungs is higher – yes, it’s complicated). He is not on any sedatives, though. And very little O2 to help him out. They’re weaning him off the O2 in preparation for moving him to step down. They’ll take out his chest tubes (draining the space around his lungs) later today, too, which will greatly reduce his pain and increase his mobility. Either way, though, they said we can hold him later, even with the chest tubes in, if they can’t come out.

So, I’m going to share a scary story from last night. Don’t read on if you don’t want to know… Last night when they extubated him (took out the breathing tube out of his trachea), he had some trouble clearing secretions from his lungs, throat, and head. He wanted to cough them out, but couldn’t muster up the strength, and it must have hurt to try. So they had to suction through his nose and throat over and over and over again. He would get so mad that he would freak out, hold his breath after letting it all the way out, and not take a breath in for many seconds. His O2 sats would plummet, blood pressure would spike, and give everyone a scare. Once, he “desatted,” meaning his sats went way down below 40, and he became bradycardic, meaning his heart rate slowed way down. That was a very scary moment, when the nurse (who was AMAZING) had to page the cardiac medical team, and they had to use the bag to give him breath. But he always came through it pretty much on his own, even when they bagged him they did it just as a precaution.

The main issue was just that he was in pain and so mad at them for ripping that tube out of his throat and lungs through is nose. Wouldn’t you be angry? Anyway, as the fellow who was just here said, “He has a strong personality and his was showing us that.” Yeah, Coley! Be strong, baby.

Finally...

Hi again, everyone. I'm down on another computer - couldn't sign in on the wireless connection, for whatever reason. Urgh.

I don't have much time because I'm about to faint from hunger, but here's the quick update. He's doing remarkably well. They're pushing morphine, chloral hydrate, and fluids to keep him pain-free, hydrated, and balanced. He looks very pink (funny how we didn't even notice he was anything other than perfectly pink!), and his O2 sats are hovering around 89%. Pretty sweet! He has sort of woken up a couple times and looked around druggedly. I can tell he's uncomfortable, unfortunately, but that's what the morphine is for.

They're hoping to extubate him in the next couple of hours - that is, take his breathing tube out of his nose and let him breathe on his own. I don't want to be there for that; it apparently makes them cough and sputter and cry and isn't too pleasant. BUT, that will be a major step toward moving him out of the ICU and onto the recovery floor. And it'll be nice to see his face again!

We'll let you know if anything happens. Thanks for staying tuned and sorry for the delay in posting!

-Anna, Ted, and Coley

All is well

Hi All,
Anna asked me to write this post. She is unable to sign into the blog herself.

All is well. Coley is done in surgery and it went well. He just got moved to the CICU and Anna and Ted will be able to see him in 45 minutes or so.

Let's keep sending our love and hugs.
-Auntie Nabia

He's in surgery

That was really freakin' hard. We just had to hand him off to the anesthesiologist. He had some sedative that made him really sleepy - loopy, in fact. His eyes were at half mast and he was grabbing at my face... so cute. Ted and I had a moment to sob, then collect ourselves before meeting 'Nana and Pa' in the waiting area. A few more sobs when we saw them. My dad is on his way, and I'm sure there will be more sobs when he gets here.

Now we just wait. There are nurse liasons who will update us frequently. They'll call before they make the first incision - could be any minute (it's been an hour since they brought him in). Then update every 75-90 minutes. Then update when taking him off heart-lung bypass machine and closing. Then the surgeon will come out and talk to us. Needless to say, I'm terrified. But I can't do much about it except watch 30 Rock and try to escape. We did see the surgeon before leaving the prep area, and he was incredibly calm, smooth, reassuring. So that's nice.

I LOVE that it's snowing today. Love that schools are closed. Makes the world seem special somehow...

Anyway, we'll update again when we know anything. Thanks for checking in.

Home Friday night

Finally back home, and grateful to be here, not at the hospital. We're all exhausted. Coley is STILL sleeping. He woke up twice - once to eat (he downed a bottle of sugar water and nursed a little before falling back asleep) and again when the nurse took his IV out (ouch!). We're probably in for a rough night, given that he's basically been sleeping since 8:30 this morning. But he's sleeping so peacefully now... we should probably take advantage of it and all just go to bed!

Many thanks to all of you who had us in your thoughts today. Whatever you're doing, keep it coming! The docs were SO pleased with what they saw in the cath today. Everything looks just right - pressure is good, valves are good, heart function is good, etc. They think the timing of the Glenn is perfect and that he should come through it really well. They've been right about everything so far!

Now on to a relaxed weekend before Monday's ordeal. We'll post again soon!

Good boy!

We were waiting for the phone call, and in walks the cath doctor, who exclaims, "All done!" Yay! Quick and easy, no interventions. He should wake up soon, and if that all goes well, we should be on our way back home soon. Phew... step one nearly complete. A couple days to hang out, relax, and enjoy him some more, then Monday we're back for more nail-biting.

Cath is underway. More waiting...

8:20 a.m.
Ted and I just left Coley's bedside after giving him some sedative and watching him fall asleep. He fought sleep with everything he's got, but he does that at home, too, so no surprise there. Finally, though, he was resting peacefully when they wheeled him out. They said that the sedative worked really well, and that they probably won't need to give him general anesthesia, and maybe not even more sedative, since it was working so well. That's a relief.

What they're doing today is a cardiac catheterization. This will give the doctors an accurate picture of the anatomy of the heart and surrounding vessels, and allow them to take measurements of pressure and flow. This will inform the doctors performing the Glenn procedure on Monday; they can be as quick and precise as possible. 'Get in and get out,' that's the mantra these days.

8:45 a.m.
Our cardiologist just stopped by to say that everything looks like it's going well in the cath lab. We'll get updates every hour from the nurse in there. When we left, he said that he'd call in an hour and hopefully tell us that they're wrapping up. Everyone seems to think that it won't take as long as first anticipated (which was 3-5 hours), but only about 2 hours. We'll see... I'm not holding my breath.

By the way, Coley was a super champ this morning. He couldn't eat anything after 3, and we anticipated having a cranky bear on our hands. He was absoultely chipper! He did wake up at 4:30 wanting a snack and was upset when he couldn't have anything, but he went back to sleep and woke up happy at 6:30. He was talking away in the car and to the nurses. As cute as can be! We're so grateful that Ted's mom, 'Nana,' came down and got to see him before they brought him in.

Ok, we'll update when we hear something!

Man and beast

Hi everyone,

We're getting pretty close now to some prolonged hospital time. I'm trying not to dwell on what is to come, and just spend this time enjoying and having fun with our adorable, happy baby! Here are a few more pictures and a video so you can do the same. He loves his doggy. I wish I had a video of him watching himself in this video - it's almost cuter than the original video! Check back soon for more updates about how tomorrow's pre-op workup and Friday's cardiac catheterization.

Vermont Trip

We had a great trip to visit my sister Hylah and her family for the 4 day weekend (thank you Abe Lincoln). We had two very restful sunny days, then Hylah and I caught Coley's cold. Ick.

On our return home, we spend the night with Anna's grandma Nancy at her wonderful new home in Peterborough, NH.

Update! (and photos below)

Hi everyone! Sorry for the radio silence over here, but we were getting some of that on our end, too. We've just returned from a quick and breezy visit to Coley's cardiologist at Children's. He's weighing in at about 16 lbs, and is about 26 inches long... or should I say tall; he's now standing up (with a little support)!

He's as pink as ever; his oxygen saturation level was up to 85% this morning. Pretty amazing! No wonder he's growing so well! However, it could mean that the pulmonary stenosis is widening, allowing more flow to the lungs. That is fine to a point; we just don't want it to open up too much and allow too much blood to the lungs - they could flood. We still have a nurse coming to the house once a week, though, keeping a good eye (ear) on his lungs.

Here's the big news: Coley is on the surgery schedule for March 2nd. Prior to that, he will have a cardiac catheterization to measure the pressure in the heart and the vessels around it, particularly on the way to the lungs. That will be on Friday, February 27th. He'll stay one night in the hospital, then return Monday morning for the real deal.

Needless to say we are quite nervous about all that is to come. However, first of all, it's not for another 4 weeks. Furthermore, it must be said that all the cards are in the right place. He is going into this procedure in the best condition possible - healthy, big, and strong. We have the best cardiologist and the best pediatric cardiac surgeon, possibly in the world. Coley's main cardiologist this morning compared his surgeon to that pilot who made the emergency landing in the Hudson a couple weeks ago. If something like this is going to happen, he's the guy you want at the helm.

All of the cardiac complications aside, Coley is a stellar baby! As I said, he is standing up with help from Mom or Dad or Gaga (my mom), and loving it. That's all he wants to do - forget lying down or sitting. But we're working on sitting, too. He can pretty much do it with hands on knees. Until he starts to topple over, then forget about it - he doesn't yet have the reflex to reach out and catch himself. So he's on his face, screaming if you don't catch him. We try not to let that happen too often, but the comic relief is nice occasionally. We're also working on sleeping. He's teaching me what works for him... and what doesn't. We're down to about 2 times waking up per night. We're getting there!

Thanks for checking in and reading this far. We are so grateful for everyone's love and support. You have been amazing. Thank you. Please enjoy these pictures from the month of January. (I'm a bit trigger happy. Can you tell?)

CUTE!

Happy New Year!

From Coley: "Welcome to 2009, everyone! Will 2009 be as exciting for me as 2008 was? It'll be hard to beat, with my birth, and all... Check out this movie my mom made of me."

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!