Oliver was released this afternoon for good behavior. 🙂 His recovery went well (technically still going, I guess). After sharting on Saturday, he was able to start eating formula and had a nice diaper blowout on Sunday. Today, he was doing so well that they decided to let him finish his recovery from home. Today Oliver acted extremely happy when he was presented with a few small bits of food for the first time in days. It made sense… eating is one of his favourite things to do, just like dad.
Oliver’s surgery was Thursday morning, it’s now Saturday, and his recovery is going really well. He is slowly starting to feel better (we can tell because he’s starting to flirt with the nurses again), there is no sign of infection of any kind, his NG tube has been removed, and most importantly, today he let out a couple of loud, greasy toots, an indication that his intestinal system is starting to kick back into gear. It’s a funny thing to celebrate a good shart, but it’s probably something we should all do a little more often. 🙂
I expect we’ll be here in the hospital a few more days. He’s been on IV fluids and hasn’t started eating yet, and once we are given the green light to start feeding him, they will want to monitor how his system responds for a couple of days.
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.
Some of you probably noticed that I took a little break from writing in this blog. Officially, it’s been just over two months ago since my last post. I feel a little guilty about that. I don’t feel entirely obligated to share my feelings, and I don’t feel too bad about failing to document events from the past 2 months, but I do know that several people visit this blog to stay current on Oliver’s condition, and 2 months is a long time for no news. For that I apologize, and hopefully this email can get everyone back up to speed. Here goes…
Oliver is doing really well now. As visual proof, here is a short video of Oliver giggling over Christmas break:
But Oliver wasn’t always so happy. My last post (Nov 2, 2013) was to notify everyone that Oliver had been released from the hospital. It was indeed a positive step, but at that time he still had an NG tube in his nose for feeding and an ostomy bag for his disconnected bowels. In addition, several of his wounds from infiltrated or infected IV’s required dressing, and he was also going through fairly significant levels of withdrawal from his pain medication (or at least that’s how I interpreted his condition as a sweaty, cranky little hot mess for about 3-4 weeks after coming home). Later we would find out that he was also teething, just for a little added pleasure. In short, Oliver was high maintenance.
To give credit where it is due, it has been Shawna who dealt with all of this head on. Shawna transformed into a wound and ostomy nurse. She figured out how to replace his NG tube, including listening through a stethoscope for a popping sound to ensure the tube was properly located in his stomach (and not in his lungs) for those times that he managed to rip that awful thing out with his own hands. I’m not saying I was absent (I did other things to help, I think), but all of us are very lucky for Shawna’s mostly self-obtained expertise in caring for Oliver. I have a newfound respect for the many parents/caregivers who are forced to do things that hurt their children knowing the little ones don’t understand that these things are for their own good. It’s not easy, and Shawna seemed to find the perfect mix of compassion and efficiency, although like any great mom, compassion always trumped efficiency if the two were ever at odds.
Currently, Oliver is doing really well and seems to have returned to his normal self, but technically he is still on the road to recovery. On the positive side, his wounds have healed, his NG tube is gone, his appetite has returned, and he is off all medications. Most importantly, his heart is functioning properly and seems to be healed, for the most part. His pulmonary valve is still a bit leaky, but there is a strong chance it will never affect him. That alone is a HUGE relief.
On the negative side, he’s not the best sleeper in the world. I like to blame Oliver’s trials and tribulations for that, but my parents insist that I deserve to have a baby who dislikes sleeping (and, more generally, any situation in which he is not being held). If sleeping poorly is a genetic trait, however, then doesn’t the blame for that point right back to my parents? Yup. Boom.
On the serious side, he will have his ostomy bag until his bowel reconnection surgery, likely to be scheduled for either February or March. Originally, the doctors indicated he might be able to have this surgery before Christmas, but as I described earlier, he wasn’t doing so hot at that time and he wasn’t gaining weight, so they decided to postpone the surgery, to my relief. Nobody wants to care for an ileostomy for an extra couple months, but I’d take that over a premature abdominal surgery any day.
Plus, Shawna’s the resident ostomy expert. Not learning ostomy care has turned out to be a wise move on my part, much like never learning how to clean bathrooms. 🙂
Here’s a couple pictures of Oliver and Clara with their great grandparents. Pretty special.
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.
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!
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:
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.
I’ve been bad about writing this past week, and I apologize. I know my mom has been keeping some friends and family members updated through email. If you’re not part of my mom’s distribution list, feel free to contact her to ask her why she doesn’t love you.
The good news today is that Ollie is finally coming home (day 30 post surgery). There had been discussion this week that perhaps he should have the surgery to reconnect his bowels later this week, but the doctors decided that to wait a while would be best. His (hopefully) last surgery will likely happen sometime in early December. He hasn’t mastered eating yet, so he still has an NG tube for feedings and pain meds. He’s being weaned off the pain meds, and he’s been going through some rough patches of withdrawal, but for the most part, he’s been pretty happy and he seems to be the Oliver we knew before the surgery.
Excited to get him home. Excited not to be in the hospital anymore. Here’s a couple pics of him over the past couple days.
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!!
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.
Regardless, I’m proud of my little graduate.