Cute ^3

One more way that Jacob is a lucky little boy.

He was born in the year 2011, a year that saw the arrival of two other little boys in our family. What timing! I don't know what could be more fun for a little boy at family gatherings but to have other little boys to play with (get into mischief with). And all the same age!

A visit this past weekend by my bestie cuz and her family marked the first time all three were together.

Our house was overrun with cute. And we loved it.

(bubbles were a big hit)

(going for a walk in the heat got mixed reviews)

Possibly the last post about heart surgery, eh? Fini!

Not the last blog post, silly! Just the last one about heart surgery.

Ok. So Jacob had his follow-up with the cardiologist this week and I'll cut to the chase - it went great! Jacob's Dad was large and in charge for the myriad of testing and he reports that the staff still isn't sure where everything is in their lovely new space (he even had to explain to a nurse where radiology was)... but he and Jacob managed the morning pretty handily anyway.

The cardiologist reports that Jacobs heart looked great on the echo, all the swelling (from surgery and working too hard prior to surgery) is gone and it's back to normal size. Lungs? His lungs were "clear as a bell"!! No fluid around his heart and none detected in/around his lungs. All good. Good. Good.

His sutures that were still on the drain tube holes were taken out and now those are healing nicely. And his chest scar is almost completely healed. It's really amazing.

Chylothorax, you ask? So since there was no fluid around his lungs, we can stop with the crazy yucky formula and go back to our old faithful formula....yay! ...although unfortunately we have to do a transition formula for two weeks first... Boo! (But he is tolerating the transition formula much better so that's ok. We'll get there.)

That's the follow up scoop. No cardiologist until August! Can you believe? And then after that we go to only yearly check ups. Wow!

Far be it for me to point out that it's not football season. But I think cute overrides sport season appropriateness, no? (and a shout out to our friends C & CC who sent this to Jacob! Cuuuute!)

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BTW. If you thought Jacob's parents didn't have enough going on now that his surgery is over... Oh don't you worry....

Just when we thought it was safe to put away the Tylenol...

Just when we thought it was safe to put away the Tylenol...

...a stinkin' little tooth decides to make an appearance. Sorry Jacob. No rest for the weary.

So... we will have to give Jacob's liver a break from pain meds in another couple of days.

• But hey - Jacob's first tooth! Yay
• And hey - two weeks out from surgery and no need for Tylenol (except for the occasional dose for the tooth)!! Yay

Many apologies, I have no photo of said tooth (yet). Jacob is a master at maneuvering his lips and tongue to keep it safely out of sight.

Back in the saddle... er ...stroller.

What's the big deal?

I'm just going for a walk with my Mom and Dad to get Indian food.

Heart surgery? Ancient history.

Yes. Unbelievably Jacob and his patched up heart is back home and largely back to his little Jacob self. A little fussy today and still lovin' the hit of Tylenol every four hours but good, good, good.

All three of us slept like rocks last night. We all needed it.







Our departure from the hospital wasn't without some drama over a wayward formula delivery (long story) but we finally made it out about 7pm (see Dad run).

Not, of course, without a sponge bath (Jacob, not Dad) from one of his favorite nurses. Lucky little boy. Which he didn't enjoy at all...

Amazing that his little body was so covered in medical what-not only a week ago. But here we are... all de-lined with only a few bruises and stitches as remnants. And under that tough guy chest scar is a stronger heart and much happier lungs.  Precious baby heart and lungs. Yay for you!

We're not quite done. We have to stay on the yucky (per Jacob) exotic formula for at least another week. Follow up with the cardiologist is next Monday and we will know then how the treatment for the Chylothorax is going (hopefully gone). But we did get an echo on Monday before we left and they said his heart looks great... so that was awesome news.

Now to settle back into life, continue to recover quietly at home, and enjoy the normalcy of coming back from a walk with run-of-the-mill baby spit up (remember: yucky formula) all over me and Jacob.

Home is where the (lil) heart is

Well Jacob and us made it home tonight. It always comes down to logistics at the end, but I can't help but focus on the end result for us tonight. Where we came from and where we have been this week crashed on us a bit once home and able to look back, but overall it's where we are headed that matters most. Feels good to breath again. Nuff said. Jake is happy to be home and immediately relaxed when he recognized he was in his own crib. Night-night lil boy, sleep tight, tomorrow is indeed a new day!
Peace & Blessings

Freedom.

The last of the lines are gone, gone, gone. Jacob is off the grid!


Now it's all about logistics (you didn't think going home was *that* easy,did you?).

What Jacob does, don't you?

We interrupt the regularly scheduled programming (of surgery recovery updates) to bring you this important message. Jacob would like to say that it's never a matter of not playing. It's only a matter of how to play within your given constraints/circumstances.

Example: If you have chest tubes in and it kinda hurts to move your middle parts, then play without moving your middle parts. It's that simple.

Here we go loopdy lou

Based on my sons recommendation if you are trying to decide between a root canal and getting chest tubes removed, consider the root canal. Reminder, "discomfort" is double speak for a doctor trying to say this will smart like a som-bitch. Never fear, citizens, Jake hit it head on like a champ and came out the victor and to him goes the spoils in the form of cuddles from mommy. Step by step, inch by inch we aim toward homeword bound. 24 hour observation starts now.

Chylo....what? Chylothorax

So one of the contributing factors that is extending our stay is a complication called Chylothorax.

Treatment includes a low fat diet (ironic, right? it was only a couple months ago we were pumping a high fat diet into his tummy for a different complication), and keeping the drainage tubes a bit longer to make doubly sure the excess fluid has drained properly. Jacob will stay on the new low fat formula for 4 to 6 weeks and have several follow-up X-rays to make sure fluid isn't building up on the lungs.

So here's the puzzle - switching formula on a baby is no picnic. Especially a G-tube fed baby who can't give you any intake cues. Doing it post op with constipating drugs on board and then throwing in a switch to oral pain meds that can upset little tummies....well... that's the complicated food and oral pain med transition. Try to solve that one, you know, while keeping Jacob as well hydrated and comfortable as possible as he recovers. Good grief.

Usually they don't like you to hold a baby until the drainage tubes are out but since we have this extended situation on our hands, the awesome nurses (nurses are so awesome) have tricks up there sleeve for securing the tubes safely enough to carefully hold him.

Jacob and I are very greatfull of that!

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In other news... cardiologist report today: Jacob's chest X-ray from this morning (they take chest X-rays every morning) looks beautiful and he sounds perfect. LOVE to hear that.

Jacob also had an awesome day. He got to sit up and we read lots of books, played with a lot of toys, and had lovely naps. What more could you want 5 days after heart surgery?

More about Chylothorax...

FAQ ....when will you be going home?

Answer: We don't know.


There are two things to address before we can go home.

A) Remove the drainage tubes (currently draining fluid from his chest). In order for this to happen, Jacob's chest has to stop draining - I know this is a little gross. Then they will pull them out and then we will be here another 24 to 48 hrs after that for observation and follow-up chest X-rays to confirm said fluid is no longer building up.

B) Get the whole feeding, pooping, pain med balance sorted out. This is a longer story and not sure it's worth writing about except to say we're getting there.

Friday (today) was a good day. We are now successfully (so far) off the IV pain meds and taking oral meds. The morning was a little rough but Jacob got through it and this afternoon with some of the heavy medication fog lifting he really started to act like his old self.

So for about 3 hours this afternoon Jacob and dad played together and mom took a nap. That was a win. Also. Today was Chic-fil-A day and we got free chicken sandwiches. Win. Also. Jacob pooped two more times. Win. Win.

TGIF!

Today is Thursday

News for today.... Jacob's Mom got to hold the baby today. Now there's some joy for ya (!).

What Day is today?

It's so easy to lose track of time in here.

First the big news: We have moved from ICU to the regular floor (!)

I didn't post yesterday because we had a baby-ain't-happy-ain't-nobody-happy kind of evening. Nothing life threatening but from Jacob's perspective much more traumatic.

While getting a lot of lines and tubes removed was a good thing and meant we got to move from ICU to the floor (yay!)... the specifics for Jacob was a long day of people pulling tape and stickers off delicate baby skin, sutures being removed, and things being pulled out of veins, arteries and flesh. Also. The big people in his life had switched him off IV pain meds and on to oral* pain meds? What!?!? (the look in his eyes for the evening was def saying to me....I had open heart surgery two days ago? No IV narcotics? Are you effing kidding me?). Plus the big people still hadn't taken off the awful arm thingys that keep him restrained plus they weren't picking him up even when he did his best pick-me-up cry *plus* he hadn't pooped since Saturday (reference narcotics). Result: by evening, patient and laid back Jacob had reached the end of his rope and he was determined to make sure everybody knew it.

Meanwhile his parents were stuck navigating this situation with a B team nurse and an inexperienced pediatric resident and a raging baby who never rages who can't articulate all of the aforementioned atrocities...that to be fair... his mother can only now deduce after several exams, X-rays, switching back to IV meds, applying constipation meds (that were finally successful), sleep, and the perspective provided by the sunlight of a new day.

[in the middle of the night faced with a distressed baby that is never *that* kind of distressed, the mind races and Jacob's parents were imagining much worse possibilities for his discomfort....especially since the distress was causing his vitals (heart rate, breathing, and pulse ox) to go all over the place.....not a good night]

But what a difference a good bowel movement can make!

That's where we are. He has more to go but he got the ball rolling. Today we go back to figuring out moving him from the IV meds again and on to oral* pain meds. Hopefully we will get the drainage tubes out today although all his thrashing about last night made them seem to drain more fluid not less so we'll have to wait and see about that. (sigh)

As a reminder (more to myself), Jacob did make awesome progress yesterday. Updated tally:

Paraphernalia

• Breathing tube (!!!!!!!!!) - replaced with nasal cannula supplied with oxygen and nitric oxide
• Right foot IV
• Left foot IV
• Central line (neck)
• Arterial line (left hand)
• Catheter
• G-tube foley - replaced with G-tube button (started formula!)
• Two drainage chest tube with external pace maker wires
• Arm restraints
• Rectal temperature probe
• Left foot temperature probe
• 3 pulse ox probes (two thumbs and a toe) replaced with one thumb pulse ox
• Cerebral pulse ox
• EKG stickers

Fluids

• 3 heart meds
• Electrolytes
• IV pain meds - oops IV pain meds
• Antibiotic
• Steroids
• Lasix

Morning reading - in PICU prior to de-lining

Post de-lining... in a proper baby crib... on the Peds floor !

The Other Side of Monday

Last week we kept saying we just want Monday over. And here we are on the other side of Monday. Ex-hale!

Jacob is doing really great today. His color is back, his eyes are clear, swelling is gone, and he's even gotten a little of his old "kick" back. The general report from the docs is that he's doing great, labs are good and/or steadily improving.

Can we tell if Monday's self inflicted trauma got us anywhere? ...well...heart rate is improved, pulse ox has improved (100!! What!?!) ... breathing rate has really improved (he's been in the 20s all day and 40 used to be 'good' for him!). The stats are pretty incredible. Jacob is throwing numbers on the board that we've never seen him have before.




He is still pretty covered with tubes and wires but he made a lot of progress today. I've read that engineers experience true joy when they cross items off a list... engineer parents given this situation? Of course we are keeping track. Here's the joy tally.

Paraphernalia

• Breathing tube (!!!!!!!!!) - replaced with nasal cannula supplied with oxygen and nitric oxide
• Right foot IV
• Left foot IV
• Central line (neck)
• Arterial line (left hand)
• Catheter
• G-tube foley - replaced with G-tube button (started formula!)
• Two drainage chest tube with external pace maker wires
• Arm restraints
• Rectal temperature probe
• Left foot temperature probe
• 3 pulse ox probes (two thumbs and a toe)
• Cerebral pulse ox
• EKG stickers
• Chest incision sutures

Fluids

• 3 heart meds
• Electrolytes
• IV pain meds
• Antibiotic
• Steroids
• Lasix

The breathing tube coming out the first day was big. For us the next big step is the removal of the chest tubes (draining the wound) and the central line. When those come out, we can remove the restraints (yay for Jacob) and be able to hold him (yay for all three of us).

We'll patiently take the joy one line at a time ....we are all still just happy to be on the other side of Monday.

We almost have May 7 in the history books.

As I am currently exhausted I don't hold out high hopes for an articulate and intriguing blog post.

The morning was long (very long). The surgery went well. The repair was somewhat more complex than they anticipated but still ...all good.

In recovery Jacob impressed everyone with how well he was doing and they took him off the breathing tube earlier than planned. All other recovery milestones are going according to plan.

They say the first couple nights can be rough so we are waiting for 'rough' to happen. So far there is no sign of it. Jacob is resting well. we hope rough never shows up.

He's attached to a LOT of stuff and some of it might be bothersome to look at (fair warning) But wanted to post a few pics of our bug-a-boo anyway. He is such a little trooper.... And still cute!

Off the vent!

One brave step at a time. We are off the vent and breathing on our own! (little help with oxygen, yes, but still)

In the PICU

Jacob is settled in PICU. We are both with him. His heart is beating all on its own. He is still pretty sedated and he still has a breathing tube in but that may come out soon. I will be able to post more later. But he's stable, doing well so far. So happy to be close to him and to be able to hold his little hand even if it is through a mass of wires and tubes.

OR Update 3

Jacob is off the bypass machine and stable. They report they will have about another hour wrapping up.

(oh dear god that was a long couple of hours)

OR Update 2

Jacob is on the bypass machine. They report everything is going fine.

OR Update 1

They called from the OR to say everything is fine. They have all the lines in and they are starting the procedure.

Getting rolling...

We arrived this morning as happy as a any other normal morning. We stayed with Jacob until he went to sleep. All has gone well so far...and they are getting started in the OR.

Sleep tight.... (yeah right)

Jacob ...fresh from a bath and ornery as ever all snuggled up in his jammies.

I am guessing he will be the only one in the house sleeping well tonight. Hope he does. Sweet dreams little heart, tomorrow is a big day.

Neverending Pre-op

We survived the Pre-op today. There's no other way to put it. The good news is the new hospital facilities are pretty amazing. The bad news is ....well here's an example... no one really knows where the new radiology is and once we found it radiology was still working out the idiosyncrasies of the new X-ray machines. Riiiigggghhhhtttt. So what was supposed to take 2 to 3 hrs (and it should be closer to 2 since it's all in the same building now)...took 5 hours. Yes that's what I said. 5. Hours. Wow that's a long day.

Other than the 'transition' issues though - well, and a traumatic blood draw - all went well. All things Jacob checked out fine. We are good to go Monday. And Jacob was a champ. With a few toys and his cadillac stroller to nap in, he had a fine day (luckily the blood draw trauma was at the very end).

We spoke to the surgeon and his PA and got a lot more info about next week. The basics: We will arrive at 6:15am Monday.... they want to start the surgery between 7 and 7:30 and the surgery should be over 3 hrs later. Jacob will then go straight to the PICU for 1 to 2 days....then to a regular room for 2 to 3 days.

Until then we plan to have a nice, quiet weekend.

EKG

X-Rays

Chillin' in one of many waiting rooms

Sunshine Rewind

I previously said that Florida (the visit, not the state per se) was worthy of its own blog post. So let's do it. I could use a little distraction down memory lane this week!

So Jacob and his family managed to escape to Florida for a weekend at the end of March for a BIG birthday celebration. And we were so so so so happy we were able to do it. One of the many perks of marrying Jacob's Dad was that Great Grandma R (jacob's great grandma, aka 'the bunny') came with the package deal. And what a deal! I could go on about how she's an amazing presence in our lives and we are blessed to know her....etc, etc... which is all very true - but much easier to say....she rocks.

Her grand sense of adventure has never waned ....from the day she stepped on a train all by herself in small town Ohio fresh from high school graduation headed for Washington DC (not knowing a soul as she pressed her way through the bustling WWII crowds in Union Station to make her way to her new job in support of the war effort). ...to the day she boarded her first cruise ship headed for the Caribbean a few months before her 90th birthday to drink her long island iced teas and sing along with the dinner entertainment!

Of course we wanted to be in the crowd of family that invaded Florida for her 90th birthday bash. It was such a fab weekend. We got to be one of many surprise arrivals for her and we got to see a lot of family we haven't seen in a long time.

Sage words of wisdom when asked if she had any advice about life after 90 years... "Just Enjoy It!"

Great Grandma R... We love you and Happy Birthday to you again! Cheers!

(and yes, if you are wondering if she is reading this blog at her tender age of 90, yes she is - she probably even checked FB before you did this morning... remember...she rocks)

Party hangover....

Also - bonus - we stayed with Auntie B and Uncle Fun who have a pool that they warmed up for a first s.w.i.m. Loved that. Jacob wasn't exactly sure what to do but he seemed to like it.