I Speak For the Trees

Patrick’s birthday loot (back in early September, and yes I meant to post about P turning 2…) included the Lorax movie and he has been obsessed with it ever since. OBSESSED.

He’ll even finish your sentences for you

if you say, “my name is…”

P smiles and says, “the Lorax!”

“I speak for…”

“The TREES!”

So, he was delighted when his Lorax costume arrived.

This is how we imagined he would look:

This is how real life turned out:

{I can’t really blame him for not wanting to wear the mustache–it was itchy!}

Most people thought he was a Pumpkin, which works for me. If I saw him at a pumpkin patch, I’d take him home for sure!

Happy Halloween!

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18 Months

Today Patrick is 18 months old! We are excited for him to have his first official day in the children’s class at church tomorrow (he’s been visiting the class for a month with mom or dad, but tomorrow he gets to go all by himself).

Patrick is all toddler, and all boy. He is opinionated but sweet, affectionate but independent, curious but particular, and oh-so-happy but with a hulk-like temper.

We have a lot of fun watching him learn, and hearing his growing vocabulary. We definitely have to watch what we say really closely now that he likes to parrot back random words and phrases. As it is, you can already tell who he hangs out with the most (his daddy), because some of his favorite words (besides “car”) are: “bassball” (baseball), “buball” (football), “tar” (guitar), and “ipad”. To be fair, though, his daddy also taught him “Isis” (Jesus).

My favorite of his phrases will probably always be “I wuvv wuvv” (I love you).

Stig it to the Man

This year Halloween brought us a Steve Jobs and the Stig

and someone scary who was too busy collecting black turtle necks, etc. to find something better than this wig (but really, is there anything better than this wig?)

Our awesome neighbors were out and about. Patrick loves to play with Mia and Ruby. Mia is fun to chase and Ruby usually has toys that he likes to “borrow” from her. Sharing is one of his talents, as long as it’s other people sharing with him.

Sometimes when you are visiting friends on Halloween, you just need to take a break to play with rocks. (Especially if Daddy is talking about Football–then you might as well make yourself comfortable.)

Seriously, though, playing with rocks was probably Patrick’s favorite part of the evening. The next best part was trying to lock/unlock the door when we got home.

We love our little Stig!

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!”)

Six Months + Cardiac Follow-Up

A week ago our baby boy crossed over to the second half of his first year. What the?!
Here he is in all his 6-month glory:

And a couple of days later…

Also, we had an appointment at the heart center this morning. Patrick is doing well and no longer has any restrictions. Just regular baby precautions. Now we need to help him catch up on his tummy-time and sitting skills. In a couple of months he may get to quite his daily meds. And stay tuned because we get to start solid foods this week!

jakey’s blankies

When Patrick was born he received a “jakey’s blanky” at the PCTICU and it has become his best friend. He LOVES to rub it on his face to fall asleep, hold it, eat it, and stay warm in it during all of his many doctor’s visits and a few hospital stays. When he is separated from the blanket for laundering purposes, he gets SO excited upon reuniting with it.

Here is a link to the jakey’s blankies story (click on Jake’s photo below)–Jake is another heart baby who was treated at St. Joseph’s. His family does a fundraiser that starts on his birthday each year and goes for the 19 days that he lived.

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This iPod photo doesn't do it justice--but here is Patrick with his jakey's blanky in ped's pre-op on Jan. 6th (he didn't actually have surgery that day due to his head cold).

Chylothorax

Yesterday after Patrick had been drinking breastmilk again his chest tube started to drain white/milky. The nurse explained that this might be a sign of chylothorax (‘chyle’ just means ‘fat’), and this morning during rounds they confirmed that it has continued and diagnosed it. Basically, during surgery his lymphatic system was traumatized somehow and is now leaking the fats from Patrick’s breastmilk.

In response, they have Patrick eating a special formula called portagen (he’s had 1 oz so far–it is funny-smelling, but hopefully he doesn’t think so). He may need to be on a portagen diet for up to 6-8 weeks, but it will just depend on how he’s doing. From what I understand, portagen contains medium chain triglycerides instead of the long chain ones found in breastmilk and regular formula. The important thing is that the portagen does not need to be processed through Patrick’s lymphatic system and therefore the fats won’t leak out. That will be a win-win because Patrick will be getting the nourishment he needs and the drainage can eventually stop so that the chest tube can be removed. He’ll be much more comfortable without the chest tube.

Other than the chylothorax, Patrick is doing great. His BP is no longer a problem and they have been able to decrease the number of drips/meds he’s on. He’s down to oral tylenol and ibuprofin (actually he’s on a stronger version of ibuprofin, but I can’t remember what it is called) for pain.

This morning he was interested in looking at his books, although he was a little frustrated that he couldn’t hold the books and help turn the pages like he usually does (he still has an IV in his right hand so it is bandaged up and has a sock on it…) He was trying to grab his feet as usual, and wanted to be picked up. Despite his annoyance at his currant limitations he is quite a trooper and is now napping.

Patrick's personal harp performance Tuesday evening.

Yesterday he got to sit in a bouncy seat that vibrates. Having his head elevated aleviates some of the pressure that goes to his head as a result of the Glenn procedure. The vibrations kept him from sleeping too deeply (gotta keep that BP up!). And being able to bounce him was helpful for calming a baby who can't be held and rocked quite yet.

MLK Happenings

Patrick’s surgery has been rescheduled for Tuesday, Jan. 18th at 7:30am. It was only a year ago, as a MLK weekend gift to us, that we found out that I was pregnant with a ‘Pedro.’ Essentially, that’s when our relationship with Patrick began.

This year our MLK gift will be a better-working heart for Patrick. Based on his test results, the cardiologists are pretty sure they’ll need to do the Glenn procedure in addition to the valve repair.

Patrick’s cold is still lingering a bit, but seems to be on the way out the door. Good riddance! He’ll see his regular pediatrician on Friday for a well-baby visit, we’re hoping by then he is back to full health. Pre-testing will be on Monday, the 17th, and then we’ll check him in at 5am on the 18th for the real deal. Maybe our dress-rehearsal last week will make it a little less stressful this go-around.

Every post deserves a picture, so here’s a shot from early December that shows how P feels about pre-testing and surgery: