I'm not sure what made it so difficult. Maybe, I was just out of practice. After all, I hadn't pulled my sorry ass out of bed to get ready for work for almost a month. I wish I could say it was laziness. No, I had usually stayed in bed because either Elisa or I had just gotten home from the NICU at St. Mark's. Or, we weren't even remotely rested after trying to share a twin bed. Even once we were home, we'd worry so incessantly about Sam's stats that it didn't feel like we were getting sleep. So maybe I just wasn't used to it. I also stayed in bed, at times, out of depression. Especially last Tuesday morning, after Dr. Doom had provided his horrible prognosis, I just didn't want to move. I didn't have the energy to face more horrors. It could have been that I felt down.
I think, however, I was scared to go back to work...and to be forced to talk about Sam. I was not looking forward to the sad stares. The pause after the congratulations. People who hadn't followed the blog asking me where I had disappeared to. I wrote the blog, yes, for my own therapy. And it really has helped. But it was also a venue that could keep people posted on how Sam was doing without having to relive the good, bad, and ugly of the experience 17 times over. It's exhausting enough when you're telling someone good news or a funny story over and over. Imagine reliving some of your worst times, and feeling that you're somehow failing someone who cared enough to ask if you don't take them through the entire experience.
There was one more reason for my hesitation, however. I would be leaving Elisa with Sam. No, I wasn't worried that she couldn't handle it. I was worried that she wouldn't have a sounding board. She wouldn't be able to ask questions, wonder if Sam was going to get better, or escape for a quiet moment if she needed it. She'd be on her own, and I would be at work. It seemed cruel. Go through four weeks of hell, and then go our separate ways to "battle" our own broken psyches. Joy upon joys. Still, I was hopeful that I would get out of bed, help Elisa get settled for the day, and enjoy work. Maybe I was overreacting. Maybe things wouldn't be so hard.
A few blogs ago, I said I needed to trust Elisa's intuition. Maybe, just maybe, I need to trust my own. The feelings I had - of my own return to work and Elisa going it alone - were well founded. At work, I was faced with good and bad. I was able to thank and reconnect with a couple people that literally saved my life during these last four weeks. It was especially comforting to be able to tell him that he saved my life, in person. For the first time, I was able to vent about Sam with someone outside my family. And, true to the form of this blog, I can now be honest in some of my comments to my friend. I talked about how angry I was. That there were so many reminders in this world about the pain we were experiencing that I felt like I couldn't escape. I even vented about one of my most frustrating experiences thus far (sorry, folks...that's for my friend, not for the blog. I don't want to offend you). But along with the good, I also got the bad. I got the pregnant pauses. The clueless but caring individuals that wanted to know what had happened. I nearly cried 4 times. I silently cried once.
Throughout it all, I got a constant stream of texts from Elisa and knew that she was equally struggling. Left to her own devices, she saw signs of Sam slipping...the hands, his eyes, his oxygen, what happened when the cannula came out of his nose (and his stats dropped), his sleeping (he was a tired one), and the like. And we fell into an unhealthy routine. Elisa would mention a concern. I would try to placate it. And then I'd do a Google search to see what I could find. Wash. Rinse. Repeat. By the time I headed home, I was physically awake and emotionally exhausted. Elisa was too. Sadly, Sam was just getting ready to give us one of our greatest scares. Of course he was. Get our emotions nice and raw, and then wallop us across the face.
It started around 7:30, and seemed innocent enough. Sam had been sleeping most of the day. My Google searches had convinced me that his cluster feeding over the weekend and the endless sleep were part of a common 3-week growth spurt. So Elisa headed up when Sam was awake (he hadn't been) to eat. After Elisa was done, she started burping him. She was successful at dislodging a big burp, but then Sam screamed bloody murder right after. And from that point on, cried. And whined. And arched. And otherwise scared the crap out of us. He couldn't get comfortable. He wanted to be held, but then would squirm and cry again. He didn't want his bink. He didn't want to sleep. I thought his breathing got worse. I thought his heart was beating out of his chest. And trust me, 2 1/2 hours is a long time to fret, worry, and watch. By 10:00pm, I was hopeful that Sam was going to eat and feel better. The only guess we had was some acid reflux (without the spit up) was bothering him. I remembered Dr. Day mentioning that reflux could be a side effect of the Sildenafil.
When Sam was trying to eat and continued to scream, we both had enough. I picked up the phone and we called the Cardiologist for the second time since we were home. In a weird way, I felt that this Fellow wasn't quite up to snuff. When you get a lot of "Hmm!" when you mention a symptom, you know you're in trouble. Together, utilizing the one medical degree between us, we came to the conclusion that it probably was a spot of reflux. I was instructed to sit him up after feedings in the hope that it would resolve, and to go buy over the counter meds that worked 50% of the time. Wow, thanks! 50% of the time it works all the time. It did seem, however, that Elisa had powered through the 10:00pm feeding, and Sam had at least stopped crying. We put him down, and the...special night began. No, Sam didn't cry and convulse. He moaned. First, he's breathing fast. With every breath, he would do a little baby moan. One thing you must know about me is that I like my quiet when I'm trying to sleep. It drives Elisa crazy, but if our fan is making any annoying clicking noise, I'm out of bed and trying to adjust it. I just can't sleep when it's happening. You can only imagine, then, how I reacted to a baby moan that took place every second...for 5 hours. While we were sure Sam was there, breathing, and sleeping, I don't think Elisa and I were. And man...babies make weird ass noises when they're little. They give that clicking fan a run for its money, to be sure.
I am happy to report that Tuesday was a much better day, both for me at work and for Elisa at home. Free from the first day back, I still had reminders, but I was also able to start letting my mind leave Sam for short bursts. I felt exhilarated to be needed at work, and to have a clarity in how things were progressing since I had been away from everything for the past month. Elisa was stronger too. She took both kids to school and then grabbed a Starbucks. That didn't mean it was all smooth sailing. She feared the cannula had fallen out, so she pulled over to check. She went home and realized that Sam had been awake all morning (see? I told you that the sleeping paid off!) and all she could do was sit on the couch. I talked her through selecting one thing that she wanted to accomplish the entire day. Tomorrow, she could try two if she was successful with the one. And she ended up, I believe, enjoying some time with her boy, even though she was still nervous. She also swept and polished our kitchen floors. Okay, it was one task completed. But when you're where we are, you realize how critical it is that you got through a work meeting without getting lost in your own mind. Or that you cleaned a floor that hadn't been touched for 4 weeks. Little things are sometimes big things, people.
But this was all leading up to the main event. Because today, we had Sam's first appointment with his Pediatrician. I was still nervous - Dr. Day, the NICU, 4 Neonatologists, and the CICU had killed any naivety I previously had about going to the doctor. While sitting in the waiting room, I couldn't focus. I couldn't sit still. I just kept playing my previous experiences over in my head, secretly wondering if we would get more bad news at our newest trip into the medical world. That, however, was completely unfair to our Pediatrician. I've met plenty of doctors in my life, and I can unequivocally say that Dr. Pete Moskowitz is my favorite. Maybe it's because he is so personable. Maybe he just has a way of not making you feel dumb. Or perhaps its the fact that he spend 45 minutes with you, answering every question and inquiring about how you, as a parent, are doing. Dr. Pete is our medical savior. I should have known that he wouldn't disappoint.
And in the span of about 80 minutes, he did what every other doctor, nurse, or practitioner hadn't been able to do. He calmed us. He didn't sugar coat things. We didn't leave thinking that Sam was healthy. No, it was in his delivery that he explained things, talked through our concerns, and said "it's going to be okay"..without ever actually saying those words.
We caught Dr. Pete up on the latest developments - the fistula, MRI, move from CICU, discharge from PCMC, and the three days of constant worrying. And then he started taking us through things:
The fistula
He would have never suspected that it could be that, but once we told him, it made sense. He told us that an AVM, while problematic, is not typically known for causing a high enough flow of blood to affect heart and pulmonary pressures. A fistula, however, encourages rapid flow and he could see how that could be causing the heart to work harder. In his mind, that was the missing piece in Sam's story - way back, he kept saying that something didn't make sense. He wanted to know why Sam had the pressures. He felt the fistula was a sensical answer.
The fix
I specifically called this blog "it's all in the delivery, part deux" to draw a direct comparison to Dr. Smith, way back in the St. Mark's NICU. If you'll remember, she was the doctor that gave us good news in such a way that I was sure Sam was worse. Dr. Pete, on the other hand, talked through a serious condition with grace and hope. He described a fistula and AVM as being "two types of chocolate...a little different, but still chocolate". He understood why the Neuro team wanted to wait. Heart caths can be done on infant patients and that is a difficult procedure as the heart is really the size of the baby's fist. Imagine trying to navigate smaller vessels way beyond the heart, and getting it right. The bigger Sam is, the bigger the vessels are...and the easier it will be to fix and get at the problem. But Dr. Pete showed no concern about the fix. They'd get it. They'd fix him. And it would resolve the heart and lung pressure. No doubt. Just acceptance of the path and a belief that Sam would come out of it like a champ.
Our concerns
We talked about all of them. Dr. Pete wasn't worried about the whole hand temperature things. It made no medical sense that the left hand would ever naturally feel cooler or that his right hand would feel warmer. No other symptoms existed. It could have been the IV. It was probably just the way that Sam lays...and it restricts some flow. Nothing to be worried about. We talked about the reflux, and Dr. Pete walked us through being careful about reflux medication until we were sure it was the cause...it could have been a big gad bubble. We covered his breathing, his lung pressures, Dr. Day's bedside manner, our potential need for therapy, our feelings of being first time parents on our third child, what to do when Sam got sick, how to track and view his weight gain, and how to handle the oxygen (he, like many others, said that the oxygen wouldn't be going anywhere for awhile...but he did it in a way that said "and that's okay"...which made it okay for us too). Everything we brought up was valid. Everything had something to talk through. None of it was stupid. None of it was unclear. And with every word, our chests seemed to unclench.
Sam, by all accounts, was a beautiful baby boy. They weighed him with his clothes on (don't ask me why), and he was tipping the scales at a robust 10 lbs. 7 oz. Clearly, Sam was still growing, which is the key sign that he's battling. Lukas and Miles got flu shots as a protection to Sam. Dr. Pete stated that he was working on a preauth for a drug that could help Sam avoid the worst of RSV (it's usually reserved for babies that turn blue from a lack of oxygen, so he's not sure Sam will qualify but he'll try to get it until he's told no).
We entered Dr. Pete's office today with a little boy suffering from pulmonary hypertension and brain fistula. We left with that same boy, and the weight of the world removed from our shoulders. Maybe it will last for a day. Maybe an hour. Maybe a week. Maybe a month. But it doesn't matter. It was lifted. I felt like I could breathe. I didn't feel like Elisa and I were so alone. And I felt hope. Not that he gave us a magic pill, but that he made us see that the bitter pill can and will be swallowed, and that the true hope and belief is that it will work.
And after you've been through 17 days in NICU, 2 days at home, 5 days at CICU, the potential prognosis of losing your child, and 3 more days home full of worry, you're long past trying to accept the bitter pill. You just need someone to crush it up, put it in some chocolate sauce, and make it palatable. Can you ask for anything more from the doctor of your child?
Dr. Pete = chocolate sauce
In strict medical terms, of course. Okay, maybe as a human being too.
Brad
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