When I first started writing blog posts on Sam's condition, I remember trying to forcefully make the point that Sam's story and life would have many chapters. I wrote that on a day where I wasn't sure if he would be coming home, or really what was fully wrong with him. Call me naive, but I think back then, I looked at fear as the same thing, regardless of driving forces. I was scared for Sam, and I wrote to try to convince myself that he would come home. Now that he's home, I'm starting to realize that fear means something altogether different now. Both kinds of fear worry about Sam. But the one we're experiencing now...it's unique.
Fear from the NICU is a mix of adrenalin (you're always walking into a potential situation where things are improving or declining, you're making progress or remain stagnant), and what I'd describe as "acute". You're worried about the present. Will Sam eat? Will Sam continue to breathe on his own? What are his oxygen saturations? What did the 1st/2nd/3rd/4th echocardiogram tell us? When will he start Nitrous Oxide? When will he wean off of it? What is his oxygen content? You're worried about the moment, and the various milestones that will give him a clean enough bill of health to go home. Because that's your end goal, and where your fear is based...on the simple question of "if/when will my baby come home? It was a strange feeling to leave the acute fear. And you could almost feel yourself coming off of the adrenalin high as we settled at home, my parents left, and it was just the Fab Five for the rest of the evening. I was glad to leave the fear behind. I just didn't expect a new one to begin so quickly. But first, a few updates on home life with little Sam.
When we brought Miles home, I remember wondering how Lukas would do. We went out of our way to make sure he felt loved, but you could tell that he was going to slowly adjust. That, and he approached Miles with an inquisitive air. Who was he? Would things change? Was he going to be the center of attention? With the arrival of Sam, I wondered if we'd have two boys battling those emotions, but have been pleasantly surprised and amused at what Sam's two brothers have been like. I think the appropriate term would be "suffocating". They absolutely, positively, adore Sam. Yes, they were cute when Sam arrived home and they eagerly greeted him. But in the last 24 hours, they have wanted only to be with Sam, to hold him, talk to him, dance for him, and entertain themselves in the process. We put Sam in his little swing and found Lukas on one side and Sam on the other. Lukas was telling him about things like Lagoon, Disneyland, and how much he loved him. Miles was too busy showing Sam his new trains (a present from Sam) and thanking him profusely for the thoughtful gift. Not much changed after dinner. The boys wanted to have snuggle time with Sam. They paced outside his room as Elisa fed him. They wanted to watch him get cozy in the basinette. And when I took both of them to bed, there were tears. They didn't want to leave the newest member of our household.
It's continued into today. Lukas and Miles have already held Sam 4 times today. During Sam's first at home bath, Lukas was in charge of taking pictures and Miles sat on the top of the toilet tank to get a bird's eye view. Before naps, Lukas wanted to make sure he got to kiss Sam before he was put in bed. Miles was sad that he wasn't going to be snuggling on the bed with them. I even had to caution Lukas at one point to not be so forceful in his delivery of "Sam, you're my favorite brother!" as Miles stared at him. Indeed, the boys are in love. I see/feel no sense of jealousy. The closest we got was Lukas worrying that Sam was getting all of the attention - until we reminded him that all of the attention was being generated by Miles and Lukas. He seemed to understand.
Sam was also a champ at his first night home. It's hard to remember that Sam is heading towards being three weeks old, so it is a slightly different experience than three days after birth, but still, Sam did better than I expected. We found that he was actually hungrier a bit earlier than his 3-hour schedule dictated by the NICU. His last feeding of the day happened at 9:30pm, and we were delighted to see that he wasn't awake to eat again until 1:30am. 4 hours? Yes, thanks. I'll take that. Sam followed that up with a 2:00am to 6:00am sleep session as well. If this is going to be Sam, I'm already appreciative. 1 real middle of the night feeding? I could get used to this! You can tell that Elisa and I are still trying to get caught up, however. We didn't actually get out of bed until well after 7:30am. Hey, Sam went back to sleep so why couldn't we? Lukas and Miles were entertaining themselves downstairs...that is, until they got bored. We were awakened by Miles and Lukas bounding into the bedroom to "check on Sam".
Interestingly, one thing that NICU fear does is it paralyzes you to needed errands and "to dos". Now that Sam was home, we quickly realized that we needed a deep freezer for the impending rush of breast milk over the next year, as well as a stroller that would work for our carseat. Elisa and I are usually overprepared, so finding ourselves in a position to not have a couple important items was really unlike us. So I left Elisa to take care of little Sam while I headed off on errands. I picked up a Halo blanket (we learned to love the snuggle wraps that look like straight jackets at the NICU), stroller, fabric softener, and a deep freezer. Yes sir, we're getting set and ready to go!
For me, however, it was while on errands that a new fear...a different kind of fear...started eating away at me. Yesterday was bliss. We were so tired but so happy, and before we knew it, the whole family was asleep and resting. While on errands, I just started feeling off. I was clearly off enough that I had three different people ask me if I was okay. And while I didn't feel like something was wrong, clearly something was and continues to eat at me. If the NICU fear could be called "acute", then this new fear is going to be more of a chronic variety. Because the rules have changed, along with the pace of our lives. Instead of the NICU questions I mentioned above, I had a new string of questions and concerns. Whereas the NICU is "if/when will my baby come home?", now I'm worried about "if/when will my baby be healed?" In many ways, it's a duller, less pronounced fear. But we head into tomorrow's appointment, unsure of many things.
Is the pulmonary hypertension still resolving? Is his oxygen need growing, shrinking, or remaining stagnant? Is the pulmonary hypertension really idiopathic? How long will he be on oxygen? What other drugs will we need? Is there something else going on with his heart? His lungs? What is his long term prognosis? Will he see any developmental or physical delays or effects? At this point (and I hope I'm not wrong), I'm not fearful that Sam is going to stop breathing or relapse back into the hospital. I'm just worried that this will take 6 months, 1 year, or will always be something that Samuel is battling. I have no basis for this thought...everything we have researched says that once it is resolved, it doesn't come back and doesn't have longterm effects. But it's a new, dull fear that brings the entire day a bit down. And it's a harder fear to face. Because this time, you don't have adrenalin. Or doctors telling you, on the hour, how your son is doing. You just have Sam. And the family. And your fears. And the unknown.
Chapter 2 has officially begun for Sam. In this chapter, I hope to understand how Sam can battle his way through the rest of the pulmonary hypertension and to get us to a place where he "had" the disease, instead of "has" it. And I am so grateful that Sam got healthy enough to confidently answer the question of "if/when will my baby come home?" I just hope that he...and we...have the strength to face, fight, and struggle to answer the question "if/when will Sam be healed?" Because that's currently a question that doesn't have an answer.
And I need one.
Brad
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