Of Cones and Toes

Patrick enjoyed a routine visit to the Cardiologist this afternoon {“enjoyed” may not be the right word…but he was fairly brave and tried to curb his indignation, tears, and requests to “go back to the gold car.”}

P’s troublesome ticker looks pretty much the same as it did in July. While there is no imminent danger, we will need to do something {in coming years} to reduce the amount of blood that regurgitates into the atrium–enlarging the right side of his heart. Dr Rhee feels that a surgical procedure called a cone repair will do the trick. The idea is to move the three leaflets of the tricuspid valve up where they should be and reshape them into a cone.

Before doing a cone repair, the surgeon(s) will probably want Patrick to get older/bigger. In the meantime, they will call us in soon to do a study on his heart to see if he still has electrical pathways in his heart that could cause SVT (rapid heart rhythms). If SVT is still a potential problem, then they’ll do a low-risk catheter ablation to get rid of the SVT pathways. Both the study and the cath procedure would just be overnight procedures (so that they can monitor him after he’s been under anesthesia).

In other news, we are loving our new house (will share photos in the near future) and getting excited to meet the soon-to-be fourth member of our family. My due date is May 1 and so far the baby is healthy and whole. We had a fetal echo done in January to take a close look at his heart–it looked totally normal. The only item of not was that Patrick’s baby brother has 12 toes! The better to kick me  with, of course…

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Steady as He Grows

Patrick had a cardiology check-up yesterday and Dr. Rhee said that while his heart is still enlarged, it has not become any worse. If his heart stays as it is, he may not require any future open-heart interventions!

It is likely that P will need a couple of less-invasive procedures in the cath lab (one to test the electrical pathways again and make sure he’s not in danger of an arrhythmia, and one to further close his ASD). But we can handle quick over-nighters at the hospital for these types of procedures. We’re so grateful things are holding steady!

I would upload a photo of P wearing nothing but a diaper, hospital anklet, and sandals in the exam room (playing with cars of course). But I don’t have my phone  (which contains the photos)with me, so instead here’s one that Braden took on Monday (also with cars). You’ll just have to imagine that you can see his pot-belly and chicken legs ♥

Patrick Burrito

Sometimes Patrick’s love for his blanket combined with his love for perpetual motion results in a Patrick Burrito…

Note the heart monitor sticker peaking out of his onesie. Yeah, there was supposed to be a sensor thingy attached to that sticker, but those often came unattached for some reason. I’m sure that you can’t imagine what the reason was.

The cardiologists had Patrick on an Ambulatory Cardiac Telemetry (ACT) Monitor for 21 days so that they could make sure that his heart rhythmn is healthy now that the amiodarone has cleared out of his system. You can see the sensor battery pack by his leg below:

We were pretty sure that things went well since the only time the monitor buzzed at us was when either a) Patrick had pulled off, rubbed off, or otherwise removed one of the sensors, or b) the sensor battery was nearly dead. Yay for no “events”.

Today we saw Beth Rumack at the new Phoenix Children’s Hospital (PCH) clinic {St. Joseph’s and PCH merged, so the pediatric clinics moved to the children’s hospital}. The new facilities seemed nice and very colorful–but it sounds like we won’t need to spend much time there anyway. Patrick’s echo looked good. His right atrium is still enlarged, but it hasn’t gotten enlarger. His tricuspid valve is still leaky, but it always will be. If things continue this way, Patrick may not even need another heart catheter until young adulthood. We will keep seeing a cardiologist once every 4-5 months for now, but only 2-3 times a year will be SO nice. We are pleased with how well our little P is doing and very glad that he had the surgery when he did.

Stats:

Weight: 8.8 kg (19 lbs 6oz) – 30th percentile

Height: 2.5 feet – 50th percentile

Head Size: 90th percentile!!!

And that’s why they call him Mega Head (or at least Aunt Aubrey does).

We are told that his proportions will start to even out eventually–the Glenn procedure is still playing a large part in the crazy growth curve his head size is on. Credit for that is also due to his genetic inheritance (Patrick says, “thank you, daddy!”)

Upcoming Cardiac Catheterization

Patrick has been scheduled for cardiac catheterization on December 8th at 9:30am. We will check him in at 7:30am that morning and he’ll be kept overnight after the procedure (probably discharged by lunchtime on the 9th). Before the procedure they will give him a full check-up to clear him for the catheter. Patrick will go under general anesthesia for this event–which sounds better to me than trying to keep him calm and still. Here is a little description of the procedure:


I was relieved to learn that Patrick won’t be required to fast for an inordinate amount of time or anything. However, he is not to have any breastmilk/formula after 3am on the 8th, but can continue drinking Pedialyte, water, or diluted apple juice between 3am-5:30am. Past 5:30 he is not to eat or drink until he wakes up following catheterization.
After this they will talk to us about when surgery will happen and what they plan to do based on what they see in his messed-up little heart. If there are things that you think we should ask beforehand about the heart catheter, or about the surgery in general, let us know.

Ten Pounder

Patrick saw his cardiologist, Beth Rumack, last Thursday for a routine checkup. He weighed in at about 10 pounds!

Left: 10 Days Old, Right: 6½ Weeks Old

He has been growing steadily and according to the chest x-ray and echo done on Sept. 30th, his heart has not really become any more enlarged than it was at discharge. Also, the tests showed that his ASD (a hole between the right and left sides of his heart) has actually closed up a bit on it’s own. This might mean that the ASD could be repaired via a heart catheter rather than open heart surgery–which I think could buy us more time before the tricuspid valve repair is necessary.

Patrick had occasionally been trying to sleep longer between nighttime snacks, and Beth told us that we could start letting him do so. She told us that as long as he is getting about 20 ounces of breastmilk per day then he should be fine sleeping through the night. At the time Patrick was only eating about 15-16 ounces a day, but once I started letting him go longer between feeds at night, he really picked up his game. Over the last few days, he increased his intake from about 18 ounces to 24 ounces. So far he has still been waking up once or twice during the night to eat (most consistently at 1 or 2 am), but even that has been so nice for me (he was eating every three hours before). Yay for more sleep! I went from a total of 4-5 hours to a total of  nearly 6-7 hours of sleep each night. Amazing.

Patrick literally changes every day. He is developing so quickly, and we are having a ton of fun with him. He has become a lot more smiley and talkative with his little Patrick sounds.

At 7½ weeks old, Patrick likes to:

  • Keep his legs and arms in constant motion (often in his sleep as well)
  • Kick with his right leg more than his left
  • Have his hands balled up in fists still (although we are starting to see him keep them open occasionally)
  • Grip things in his fist (i.e. our fingers, toys, hair–unluckily for Braden’s chest hair, etc.)
  • Pee in the bathtub
  • Poop on Daddy
  • Hang out on the changing table. He has come to appreciate diaper changes more (he HATED them as a newborn) and he really likes to look around at his toys and monsters that hang by the changing pad. Some of our best conversations take place there–he likes to be sung to, talked to, and to learn new tricks while he’s laying there.
  • Hold his head up. Patrick has the head control of a 3 or 4 month-old (as per his pediatrician).
  • Put a halt to ALL other activities in order to concentrate on going #2.
  • Hold Daddy’s thumb while being bottle-fed
  • Look at himself in his crib mirror and the mirror above his swing
  • Sit in his swing, whether it is moving or not. And he loves to sleep there.
  • Watch the lights on his activity play-mat
  • Follow toys with his eyes when we move them back and forth in front of his face
  • Fight sleep with all of his might
  • Ride in his baby bjorn carrier
  • Take his heart medicine–seriously, he thinks it is super tasty and he’s sad when his daily dose is gone
  • Video chat with his grandparents
  • Sleep on Dad…