Two Steps Forward, One Step Back

The progress department delivered us a bit of a set-back yesterday afternoon.  Daniel developed some respiratory distress out of nowhere…difficulty breathing, turning blue, and needing to be bagged to get his oxygen sats back where they should be.  The first episode happened while I was pumping, so I didn’t have the chance to freak out (which is a good thing).  He sounded really icky (for lack of a better word) in the upper-respiratory department.  Trying to just get him to cough and clear things out became the major focus of the afternoon.

At one point, the nurse thought he may be aspirating (oral meds just disappeared when they went in his mouth, no swallowing action at all), so everyone felt like he should have an N-G tube just to make sure he wasn’t getting food or meds into his lungs.  I’m not really thrilled about it…but if it’s going to keep him safer, then so be it.  While the tube was being placed (and I stepped around the corner so I didn’t have to witness the struggle), Daniel repeated his pattern of difficulty with breathing, oxygen de-saturation, turning blue and needing to be bagged.  Ughgh!  I’m thankful I didn’t witness it (again), but gee whiz…I can’t step away for 2 minutes!

The tubes won this round, but we’re still a net of –1 in the tube department!

He was put on high flow oxygen and given some steroids and lots of suction.  Of course everyone starts talking RSV or some other virus, so he’s being tested for that.  Which means nurses have to wear gowns and masks to care for him, and it feels like we have the plague because we’re sort of in isolation.  Fun times in the ICU!!

I arrived this morning relieved to find Daniel doing well and looking pretty good.  Since he is on high-flow oxygen he can’t have anything by mouth, so that means the wicked N-G tube is scoring the points right now.  (Ha ha ha…we shall triumph, I promise!)  He has been maintaining his oxygen sats, his blood pressure is doing well (though he’s on oral meds for that – through the N-G tube of course) and he sounds a TON better.  We’re still waiting for the RSV testing to come back, but the first part of it is negative.  He’s also being weaned off the high-flow oxygen, so hopefully we’ll get back to where we were by the end of the day.  Fingers crossed!

Here are a couple pictures from this morning.  He was really alert with eyes wide open when I got here.

Look at all the medicine machines!  (There are a couple in the background that you can’t really see.)

Chest tube drains (they’re removing one as we speak, and he’s not very happy about it)

Still sleepy most of the time.

Thanks for all the prayers, thoughts and love.  We are feeling and appreciating all of it.

Post-op Day 1

Wow!  What a great sight we had when we walked into the ICU this morning.  Daniel’s vent tube had been removed, his catheter had been removed, and he was chugging a bottle of Pedialyte!  This kid is a super star!  He is doing really well and getting back to his super squirmy self.  We’re still working on controlling his blood pressure.  He is responding to the meds for it – thankfully – but it just keeps creeping back up when the meds run out.  We’ll get there.

Here are some pictures of the handsome little guy.

Dad got the honors of the first bottle today.

Happy (and very relieved) mamma enjoying his attempts at opening his eyes.

The eyes opened for a minute or two.  He really wants to see us and loves to be touched and “held” while he squirms.

He’s just doing really well and keeps progressing.  Our nurse last night said she thought he would be out of the hospital by Sunday (but don’t quote her on that)!  That would be the best thing ever!

Look at our boy! (post-op pictures)

We’re here in the Cardiac ICU with Daniel now.  He’s doing really great.  He has a ton of tubes and wires attached, he’s on a ventilator, and he’s more still than I’ve ever seen him.  But he looks GOOD!

Right now they’re trying to get his blood pressure down.  It needs to stay on the low side so the repairs can “cure” and not be too stressed.

Here are a few pictures (warning for those who may be a little squeamish):

He’s kinda hard to find under all those wires, but he’s there!  Contrast that with this one from this morning:

Maybe it’s just the placebo effect, by I can see a real difference in his color already.  He looks more pink to me.

He’s a little cold, so they keep putting heat packs and warm blankets on him.

Check out the pilgrim look!

We are so relieved to see him again and know that he’s being a little rock star!  We haven’t touched him yet because it causes his blood pressure to raise.  So for now we’ll just enjoy watching him and be thankful for all the progress.

Surgery Update #5

Wahoo!!  Surgery is done and everything looks good!  We’ve spoken with the surgeon and he was pleased with the way the repair went and with the current function of Daniel’s newly-repaired heart.  He even gave us rest of the square of Dacron they used to patch the VSD with.  What a fun “souvenir”!

We should get to see him within the hour.

Surgery Update #4

Doctor Mart (the assisting heart surgeon) just came and notified us that Daniel is off the bypass machine and his heart has been started back up. The echocardiogram indicates that there is very little leakage, so now they will work on controlling the bleeding, and will install some drainage tubes and get his chest closed up. They expect that Daniel will probably be in surgery for about another hour or so before being moved to recovery.

Yay for more good news!

Surgery Update #3

Daniel is off bypass!!  That means the repairs have been made, and now they do another transesophageal echocardiogram (the probe is down his throat and resting right behind his heart) to check his heart’s function and make sure the repairs are sufficient.

We are relieved to hear each set of updates!  The next one should be within the hour.

Surgery Update #2

Just talked to the nurse…Daniel has been on bypass for about 20 minutes, and the surgeon is currently working on patching the VSD (hole between the lower chambers).  Everything is going well.  FYI – for this hole they’re using a synthetic material, called Dacron.  It is stronger and more resilient than the pericardium (sac around the heart) that they’ll use for patching the ASD (hole between the upper chambers).

We are sitting in the waiting area with a lot of other parents.  We’ve had lunch and are snacking to our hearts’ content on the cookies, crackers, and juices they have for us.  Trying to pass the time with emails, blogs, books, etc.

We should have another update in about an hour (the magic time frame).

Surgery Update #1

We arrived at 9:30 a.m. and went through all the preliminary stuff…vitals, history, consults with the anesthesiologist, cardiologist and surgeon.

We just received word that the surgery has started.  So far, so good.

After placing all the lines and putting him on bypass, they will close the hole between the lower chambers, then separate the valves, and finally close the hole between the upper chambers.

We will get another update in a little more than an hour.

Confidence becomes her

Miss Rachel waltzed into her first day of preschool today with her curls bouncing and a huge smile on her face.  No tears.  Not even a hint of worry or sadness.  We’re in for some fun with this girl!  Her personality is just dazzling and silly and confident.  It’s hard to believe she was our little NICU baby just four years ago!  Look how far she’s come!

These two have been almost inseparable for the last three years.  What will he do without her?

(Caleb seemed just as excited for preschool as she was.  I don’t think he quite understood that she was going and he was not.)

I was so delighted to see her playing happily with the other kids when I picked her up.  She buzzed from here to there just like a busy little bumblebee, with barely a glance in my direction.  I beamed with pride to hear her teachers say how delightful she is, and how much they love her cute laugh.  She ran to greet me when it was time to leave, and we walked hand-in-hand as she told me, “Well, we learned EVERYTHING!”

Where has my baby gone?

Making a List, Checking it Twice

I feel a little bit like Santa Claus this week.  Only I’m not wearing a red suit, it’s not freezing outside, I don’t own any reindeer, and I’m not bringing anyone gifts.  But I do have a list that seems to be a mile long, and I’ve been working ever-so-diligently to get all the items checked off.

First there’s canning the droves of tomatoes that are turning a beautiful shade of red as they bask in the sunlight on one of the 20+ plants we have in our garden.  20 plants???  Yes, you read that right.  I don’t know what we were thinking a few months ago when we loaded our cart at the garden store.  The plants were so tiny and cute, so harmless.  They just needed some love and attention.  The current state of their branches - sagging under the weight from the fruit they carry - is evidence enough of the love and attention they have received the past 4 months.  I have peeled, crushed, and processed 17 pints (from 2 pickings) so far.  And there are enough of the red beauties on my counter for at least 10 more pints, though I think we’ll make some fresh salsa with them.

I just couldn’t live with only 5 bags of corn (what is currently in my freezer), so I picked up 5 dozen ears of corn at a local produce stand yesterday.  I had forgotten how quick and easy it is to prepare corn for freezing.  I got all 60 ears done in less than two hours, and came away with 10 bags of delicious sweet corn to freeze.  I think I’ll get some more – partly because I’m a fool, partly because I’m not sure 15 bags will last us a year, and partly because I can’t pass up 15 cents an ear!!  (Wow!!  I haven’t seen prices like that in YEARS!)

I also cooked up a large batch (read 1.5 gallons) of chili yesterday.  I feel a wee bit guilty about the prospect of Jared and the kids eating out the entire time I’m at the hospital with Daniel.  Yes, Jared is completely capable of cooking, and he does a great job at it.  But I know how it is to get home at 5:00 and THINK you’re going to come up with something to eat and throw it all together – oh, and keep everyone happy until it’s cooked.  Yeah, it’s not gonna happen much, if at all.  That’s where the chili comes in.  They all love it, and if it’s already cooked, there’s no excuse.  I’m going to be spending a large chunk of time today and tomorrow grating cheese, cooking tortillas, cooking pinto beans, etc. for meals like quesadillas, tacos, french bread pizza.  Quick, easy meals to throw together, thus avoiding the fast-food trap.

Jared brought up a point I hadn’t considered previously.  What are we going to do about Emily’s (and Rachel’s) hair?  Oh my goodness!  I had not thought about that.  Jared does a lot of things.  But doing girls hair is not one of them!  He assured me that he could help Emily blow dry her hair.  Thank goodness she has the most beautiful, perfect hair, because that’s all she really needs.  I guess he’ll have to send Rachel to the babysitters with a few hair elastics and beg them to do something with her hair!

There is laundry to be done, stuff to pack, schedules to prepare.  I guess you can see where this is going.  My mile-long list is keeping me distracted, preventing me from thinking too much (and then crying) about what is ahead for us.  I have been especially emotional today and find the tears to be coming more often than I would like.  What a relief it will be when we are on the other side of surgery and can look back on it as just a distant memory!