But I couldn't help myself. When he said the pressure on Sam's heart had lowered, my breath caught in my chest. I sputtered out some air which quickly turned to tears. I didn't really think about it at the time, but I remember our short, squat, humble little doctor putting his hand on my shoulder. Yesterday, when my parents were visiting Sam, they met the doctor (I was proud...my Mom recognized him solely off of my blog description). He specifically asked how we were holding up. One day soon, I'd like to share more about the toll that having a NICU baby takes on your health, your heart, and your inherent parenting reaction. I've just realized that having a NICU baby can make even the strongest man a blubbering....well...baby. Then again, D-Day was a do-or-die kind of day. And we'd set ourselves up for the bad news.
This D-Day feels different. Maybe it's because we're not talking about what's wrong with him anymore, but are instead hoping that the treatment has held. If you read my blog earlier, you'll know that Elisa and I were riding the wave today. The stark reality of a significant oxygen bump had kicked us in the proverbial stomach...like we were getting a little too confident about this second D-Day. As hard as it was to write that blog (looking back, I feel a bit bad about my ranting anger halfway through it), I think I needed the reality check. Nothing about this journey (one that started around the holidays last year) has been altogether easy, planned, or strategic. We've really been feeling our way, blindfolded, hoping that our instincts from our marriage and our two wonderful children would be enough to ensure we don't tumble over the edge. Today's increase in oxygen needs just solidified the feeling of being totally helpless to a 1-week old baby and his little heart, little lungs, and gigantic will.
As I described it last time, Elisa and I are on a wave. And every wave (unless it crashes on the rocks...which is a metaphor even I won't touch) rises back up. Our 5:00pm and 8:00pm feedings taught us that. Sam is responding again. Maybe our figurative kick in the stomach was his literal one. When Elisa went in at 5:00pm, they had dropped Sam's oxygen down to 38%. Yes, it's only 1%. But's its in the right direction! Moreover, Elisa expressed to the nurse that every visit is torture - we don't know how he's doing or what to make of recent developments. Lindsay took the time to make some salient points:
- Sam's oxygen stablized - and he's back on the path of weaning
- Sam's eating. And her experience tells her that if a something is wrong with a little baby, the last thing they want to do is eat
- Sam's gaining weight.
- Sam's acting like...a normal baby
The combination of a wide-eyed Sam, a supportive nurse, and slightly improving oxygen levels took the wave skyward. The 8:00pm feeding has only reinforced it. Sam's oxygen dropped by 1% again. He's currently at 37% and the nurse indicated that she wants to drop it more. It's a wonderful feeling to know that the oxygen weaning process is starting to be considered, as opposed to the oxygen stabilizing process. It gives us some peace as we head into another long evening (I get the pleasure of the 11:00pm and 2:00pm feedings again). It gives us hope.
Tomorrow morning, Sam will get his fourth echocardiogram. It will simply tell us two things: 1) did the therapy of nitrous oxide (which took the pressure off of his heart) hold and 2) is his heart healing (remember that it was slightly enlarged)? The second question might not be answered tomorrow, but the first undoubtedly will. If he's regressing, and the wave dips down, I guess we suck it up and realize that we're still a little ways from shore. If he's holding steady, I think we'll start looking for some dry land to walk out onto. So tomorrow, send some good thoughts, vibes, and get those fingers out again for crossies. Sam could use everyone's positive thoughts to help him take out milestone #2.
When you're a 34 year old techie kind of guy, you seek answers from every avenue available. I have found a great new tool to help me satiate the ravenous appetite that I have for knowledge. It's called Google. In the first week of this adventure, I primarily used Google to look up stuff about Sam's condition. I tried to find case studies of kids that had beaten it. I looked for statistics that helped me believe that there wouldn't be longstanding health ramifications. I went so far (during the Nitrous phase) to start looking at medical PowerPoint presentations to understand the proper way to wean an infant. None of it helps - in many ways, it pains a more grim and frightful story than you were hoping to find.
In the past few days, I have still used Google. But I've done it to find parents like me - blogs, message boards, Yahoo questions. Anything that could help me see that Elisa and I are simply two parents like many others that are battling a very difficult situation. I did such a search after writing the blog post about the wave, and I found a blog by a mother about a little child battling PPHN as well. She described the NICU process not as a wave, but as a minefield. You don't know what's going to happen when you take your next step. I want to send that mother an email and say "I get you". It's funny how important it is to have someone say "I understand what you're saying. I know what you're feeling. And it's okay." Hey Mom...I get you. I understand what you're saying. I know what you're feeling. And it's okay. Everything's going to be okay.
Everything's going to be okay.
Brad
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