Back in the saddle

Remember when I used to write in this blog? I barely do. I feel like his heart surgery was a long time ago, but it’s never actually all that far away. More on that later.

Oliver’s takedown surgery (i.e., the surgery to reconnect his bowels) is scheduled for 7:30 am tomorrow (Mar 20). We had to check him into the hospital this afternoon so they could prepare him for tomorrow’s event. He had an enema to make sure the section of bowel that is tied off internally is in good health. He also had an NG tube put in so that they could clean out his system, and they are now feeding him through an IV.

Nothing about today was deeply traumatic by any means. But like any 10-month old, Ollie hated being strapped to a board with his hands above his head and enemized (not a word, but it should be) against his will. And of course he was angry about how many pokes it took the nurses to get his IV in the right place. And he really detested that damn NG tube. It took several sessions to get that thing inserted correctly, and the nurses responsible for this particular line of torture went from being objects of flirtation to recipients of death stares.

The worst part for me personally was being reminded of how unenjoyable it is watching helplessly while a child is put through painful and uncomfortable things he doesn’t understand. When I purposely try to reflect on it, October seems like a long time ago, and my memories of that time period are already starting to get a little foggy. But on days like today, some of those memories and feelings come back quickly and pretty vividly (and maybe even inaccurately; memories are funny things). I’m sure I’m not the first or only one who’s experienced this phenomenon.

On a positive note, I am happy that this surgery should be much simpler and more straightforward than his October surgeries. I hope, anyway. I see that on May 29, 2013 (less than a month after Oliver was born) I wrote, “I look forward to being on the other side of this uncertain period, and I can only hope that the road between here and there is not too difficult.” I couldn’t have foreseen exactly how things would shake out, and a few things ended up being more difficult and more drawn out than I would have liked, but I still stand by that statement, and I still have the same hopes going forward.

Here is a picture of Ollie from a few mornings ago. I hope he gives me this same smile tomorrow morning before his surgery. And the morning after that.

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He will be…

Andy asked me a few weeks ago if I wanted to write a blog post about how I have been feeling this past month. I was excited to share my perspective, but as I sat to write, my mind went blank. With all the feelings and emotions that we’ve gone through, how do I even put it into words? I could either write an explosion of words that most likely won’t make any sense to anyone or I could simply put,

“I’m feeling fine.”

The week before Oliver had his heart surgery, our family and our friends and their kids stayed at a beach house for a few days to relax before the storm of the surgery. Most of the days were very enjoyable, but one morning, I just decided I couldn’t get out of bed to face the day. It’s like when you are a little kid at night, if you throw the covers over your head, the monster can’t get you, right? If I didn’t get out of bed, I wouldn’t ever have to face Oliver’s upcoming surgery.

Andy graciously let me sleep, which did help me immensely, but even when I woke up, I still had that feeling of doom. I decided to go for a run/walk along the beach. I say run/walk because I was trying to run, but the tide was up, and running on the dry, soft part of the sand makes it impossible to look cool. Actually, at one point, I was so lost in my own thoughts, that I very nearly ran into a sand castle being built up by a dad and his two kids. I skipped to the side to avoid a collision, but at that moment a foamy wave rolled up and I ended up splashing in it for several steps soaking everything up to my knees. I looked up to see the dad looking at me like “why the heck are you running in the water?” and I tried to make it look like it was a completely natural thing to do.

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Anyway, I slogged along and I got to a place that was devoid of people and I stopped…

And I cry.

I cry for Oliver and the pain and suffering that he will have to go through, and not knowing if this will be his only heart surgery or if there is more in his future. Will he have to deal with this problem for the rest of life? He doesn’t deserve that. It’s my job as a parent to protect my baby from as much agony and hurt as I can, but I can’t protect him from this. In fact, he needs it to save his life.

I cry for Clara as I feel like I haven’t been able to focus on her and her needs as much lately. She is so amazing and loving to her little brother, and I would spend all day holding her, cuddling her, and kissing her beautiful face if she would let me.

I cry for Andy as it seems the weight of the world is on his shoulders. This is a struggle as a parent and although there are parts that Andy and I can carry as a team, there are still other things that are personal and that you have to go through yourself. He is an amazing father and he cares so much for his kids. It’s hard to put your heart out there if you think that it’s going to get broken, and at that point most everything was still an unknown.

And I cry selfishly for me. How do I stay strong? How do I physically let my boy go to the doctors so that they can cut him open? How do I stand it while I can’t hold him close or nurse him to sleep or merely kiss his tears away? Why do I have to go through this? Why was Clara born so healthy and Oliver not? God, just tell me that Oliver will get through this! Please!

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And as I sat there with tears on my face and the sound of the waves crashing on the sand, a small voice popped into my head, “He will be fine.”

Do you mean it, God? Oliver will be ok? Again, I felt this phrase, “He will be fine.”

I started walking back to the house. He will be fine. Oliver will be fine. Thank you Lord! I found Andy at the beach house and told him what had happened. As I was explaining I started to think, “Was there anything particular with God’s wording?” Why didn’t I hear, “Oliver will come through with flying colors or Oliver will bounce back lickity split?”

He will be fine. Does that mean that it might not be a smooth time for us?

As we went home and prepared for Oliver’s surgery, my mind put that thought away. I was focused on my children’s needs and I just wanted to get this over with. From there you know what happened because of Andy’s previous posts.

This experience has been crushing. At times I felt like a robot going through the motions, because my heart was beyond its breaking point. I cried at the drop of a hat. I still needed to be a mom to two little kids, but I could barely take care of myself.

I had several loved ones tell me that God wouldn’t give me more than I could handle. And what I’m going to say next is not a dig against them because this is a phrase that I know I’ve said to other people and to myself over the years, but now I feel like this phrase is false.

There are things in life that will happen to you that are more than you can handle.

That’s the point. I need God to carry me. I can’t do this alone. I could barely put one foot in front of the other. In fact, this is exactly how I felt:

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God came through. I did find the strength to do what was needed to be done, and the love and support from friends and family has been extraordinary. Looking back now on what we faced, I shake thinking how in the world I got through it? But in the moment, I just knew I could. That’s God.

Now, we’re still not through everything. We have another surgery to fix his ostomy and Oliver’s little body still has lots of healing to go through. But…

“God has not promised skies always blue
Flower-strewn pathways all our lives through
God has not promised sun without rain
Joy without sorrow, peace without pain
But God has promised strength for the day
Rest for the labor, light for the way
Grace for the trials, help from above
Unfailing sympathy, undying love…”
-Annie Flint Johnson

Oliver will be fine.

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Oliver Update 2013-10-24

On Day 21 post tetralogy of fallot repair, Oliver graduated from the pediatric ICU to the cardiac step-down unit, or kick unit. 

What’s awesome about that, you ask?  First and most importantly, it means he continues to improve and that he has gotten to the point where they no longer think he needs to be monitored in the ICU. He did lose one of his drain tubes in his stomach today, but other than that, he’s still hooked up to the same things and getting the same medicine. Still, every day without a setback is another day closer to home. Second, and also nice, he gets his own room with a view and a bathroom.  Ollie getting the red carpet treatment!!

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So what’s not awesome? Other than a few more amenities, it’s pretty much exactly the same as the PICU, but with fewer nurses.  So when Oliver cries or there’s alarms going off, you’re all on your own to try to figure out how to make it stop. But you can’t unhook him from anything and you can’t give him medicine, so that’s sweet. It’s like UNC Hospital’s version of Man versus Wild.  At least there’s still a chair for a bed.  Phew!  To be fair this one is actually designed to unfold into some sort of bed, so it’s probably an upgrade. I’ll let you know once I figure out how to operate it.

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Regardless, I’m proud of my little graduate.

Oliver Update 2013-10-11

This is nothing more than an update on Oliver’s status at the end of what turned out to be a long day. Today wasn’t the worst day in that there hasn’t been any particular thing that could be considered a huge setback, but collectively, it definitely wasn’t a good day. Oliver’s fluid levels for the day are close to even, meaning his didn’t lose as much fluid as the previous two days. He now has a skin wound/infection close to where the old central IV was connected to his leg. He spiked a mild fever earlier, and it didn’t last long, but he currently is running another fever that seems to be just a bit more persistent. His abdomen continues to be bloated and swollen (distended bowels), and they think it’s most likely the result of his intestines “sleeping” from the surgery and not waking up yet. If they are correct, then no action will be required and it should just get better with time and rest. They are monitoring his belly pretty closely, however, and if they feel the problem is getting worse, they may perform another surgical procedure to remove a small, possibly problematic portion of one of his intestines. That would suck. And remember when I said that his pulmonary valve wasn’t leaking? Apparently, it is now. This leaking valve likely won’t present any problems or lifestyle limitations later in life, but I was still pretty excited when I found out after his surgery that his valve wasn’t leaking (reduced chance of additional surgery later in life), and so I’m a bit disappointed to find out that it is now.

Hopefully tomorrow brings better news. Let’s turn the corner, little man. We’re due.

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Oliver Update 2013-10-10 (revised)

Some new information:

10/10/2013, 11:00 am
Ollie spiked another fever this morning (he had another one briefly a few nights ago, but it went away quickly). Although they aren’t sure, they suspect his central line (in his femoral artery) may be infected since there is a little redness in that area. So they just put in a new central line (neck) and they are giving him another round of antibiotics.

In the meantime, they are going to do an ultrasound on his abdomen because they’re trying to figure out where exactly all this fluid is hiding. He also has a bunch of air in his stomach, and possibly his intestines, which will be confirmed after the ultrasound. I’m sure there will be new medicines and a new weight loss plan soon. Here is a picture my mom took of Oliver the day before his surgery.

Ollie bumbo

10/10/2013, 2:00 am
The doctors recently decided to change Oliver’s diet in order to achieve his new weight loss goals. After removing Milrinone, Vasopressin, Lasix, Albumin, and Esmolol, his new intake consists of Dexmedetomidine, Fentanyl, Propranelol, fat emulsion, and breast milk. It’s so simple. I can’t believe I didn’t suggest it sooner.

He is, in fact, finally starting to lose a little fluid, although it is slow going. They think he needs to lose about a liter (1000 cc) before they’ll remove the breathing tube. Yesterday he lost about 120 cc. Obviously I’m hoping he picks it up a bit. I’d prefer to not be in the ICU for another 8 days.

Oliver Update 2013-10-08

After feeling my frustration grow over the past 2 days, I have some good news to share this am. On day 5 post-surgery, Oliver’s heart decided to start functioning properly. Finally! This is especially welcome news after a new doctor, and let’s call her blunt, stopped by last night and said, “His heart is running out of time. He’s already on day 5 and we only let them get to day 9 or 10 before we decide they need a permanent pacemaker.”

Running out of time? Thanks, doctor, for your choice of verbiage. Anyway, below are some images from the monitor he’s hooked up to right now. I took yesterday’s picture for no reason at all. Now I’m glad I did so we have a comparison for today’s picture. I should have taken one on Saturday when his heart rate was in the 180s.

Ollie heart rate monitor

Seeing his heart in “Sinus” rhythm (i.e., the electric signal that tells the various muscles in the heart to contract is originating in the correct location and traveling through the correct pathway, which makes all the heart muscles “fire” in the right order) is a huge relief, because it means he likely won’t need a permanent pacemaker. It’s only been a couple hours, and he could, of course, slip back into a junctional heart rhythm, but even if so, the fact that his heart CAN perform normally on its own means that once fully healed, it probably will.

He’s still got some breathing issues going on. He’s also very swollen and filled with fluid, which isn’t helping anything (and is probably causing some of the breathing difficulty). So Ollie’s goal is to lose a few extra pounds. You and me both, buddy. 🙂

Self reflection

Right now I’m sitting in a beach house we rented with some friends while the kids are napping. On the drive out here, my wife drove and made me sit in the back to entertain Oliver as punishment for not being home in time to leave at our agreed-upon time. Three hours of making faces and noises at Oliver to keep him happy wasn’t exactly my idea of an awesome trip, but somewhere I squeezed in a few moments of self-reflection.

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I feel like over the past few months I’ve been spending more and more of my time at home thinking about work-related projects I normally save for the office. Granted, work has been busy lately, and I’ve never been one to leave work at work. But I’m spending a disproportionate amount of time thinking about various work problems that need solutions, even for me. In addition, I’ve noticed that even when I do manage to turn off my work brain, I spend my time thinking about the existence of God or researching wise investment opportunities or reading about how pianos work. The point is, I spend less and less time thinking about Oliver and his condition… and it’s kind of on purpose. Perhaps the only time I really force myself to think about Oliver and his upcoming surgery (less than a week away, btw) is when I’m writing this blog.

The other day I told a friend at work that I almost didn’t post the song/poem Oliver and I wrote (see my last post), which is about how I’m looking forward to the surgery being behind us and hoping nothing bad happens in the meantime. I’m not even sure why I said that, but I do know that the main reason I almost didn’t post it is that there are a few reminders to Oliver that he really needs to not “sleep too deep”. I know it’s normal to be worried about worst case scenarios despite also being confident that he’s going to be fine and knowing the chances of something bad happening are very, very small. Still, there’s something embarrassing (or hard to admit at least) about being someone who supposedly trusts in God yet can’t keep bad thoughts about death out of my head whenever I do start thinking about Oliver, which is why I think I’ve been either consciously or subconsciously deciding NOT to think about it and focusing on other things.

Probably some of you who read my last post are thinking, “Andy, that poem isn’t bad… it didn’t come across as depressing or weird or anything.” To that line of thinking I say that’s good to hear, but (1) you didn’t see the first draft, and (2) that poem doesn’t exactly reflect all the thoughts in my head while I was writing. I do have some filters in place (sometimes). And don’t get me wrong, I’m proud of that poem. I like it. But it wasn’t super easy for me to wade through the darker thoughts and just select those words that captured my mindset in a way that I would be glad to share with Oliver someday.

So now as I read this post I realize that for a second time in a row, I have a post I don’t feel that comfortable sharing, for exactly the same reasons! Haha. Maybe my next post will be me explaining my feelings while writing this one. I may have just stumbled upon a way to keep this blog going forever. 🙂

Anyway, as earlier stated, Oliver’s surgery is less than a week away (Oct 3). I probably won’t post anything before then, as I suspect things will get a little busy while we try to get prepared. I’ll make sure to write something afterwards, however, to keep people posted on how things go.

Godspeed, little man.