Elisa and I are trying something new today - we're going home in between feedings. We're hoping it gives us a sense of normalcy, allows us to rest, and gives us something to do (cleaning, laundry, etc.) Otherwise, we sit in the hospital room (vagrants, remember?) and worry. Sadly, in between our 8:00AM and 11:00AM feedings, I don't think anything could have stopped the worry. We walked around the house, half sick to our stomachs, half crying. And I think, to protect ourselves, we started the process of expecting to get a bad echocardiogram result. We started thinking through what it would mean to be heading to Primary Children's Hospital and what could be wrong with our precious little boy.
We arrived about 15 minutes before 11:00AM - shockingly (not), we couldn't sit and wait. We had to go. We walked in, I sat down while Elisa went to work on poking/prodding Sam, and the Doctor approached. To catch you up, we were facing one of two scenarios today. Either 1) the Nitrous Oxide was working to take the pressure of Sam's right side of his heart and pulmonary hypertension or 2) we saw no progress, and would be heading to Primary Children's to restart the diagnostic process.
I've never wanted to hug a male stranger more than that moment. The words coming out of his mouth were like a sweet elixir to the pain that was slowly pooling in between me and Elisa. They were still waiting for the official review of the echocardiogram, but the technician gave the Neonatologist the rundown. The pressure on Sam's right side of his heart had improved. Whereas his first two scans showed pressure levels in the 70s (don't EVEN ask me what that means), this scan showed Sam in the 50s. When I asked the doctor what was normal, he stated "in the 40s and 50s". He did say that because Sam's heart has been working so hard, the right side is a bit enlarged. He let us know that the heart is a muscle (hey, anatomy class paid off!) and when the muscle is overworked, the muscle gets bigger. It will take some time without the extra pressure for Sam's heart to return to normal size.
So what next? We will keep on the Nitrous Oxide for the remainder of the day, and then will start to wean him off of the stuff. You have to wean very slowly (as in, baby steps every 6 hours or so) off of the Oxide; otherwise, you risk a relapse of the pulmonary hypertension. In another sweet as silk moment, the Doctor also let us know that Sam would be "getting one more echocardiogram before we send him home." Elisa was great about pushing on what that meant. The doctor indicated that as long as Sam continues to make progress, he sees no reason why he couldn't go home within a week.
While it's not a perfect situation (he's still in Level 2 NICU, he has some enlargement in his heart, he's still in Level 2 NICU, and he's still in Level 2 NICU), it's absolutely great news to know that he's not going to Primary Children's. St. Marks believes that can get the boy set. As for where we go from here, we start the weaning process, we set ourselves up for another D-Day, and we hope against hope that we can go home soon.
Finally, because he's there and the Dr. saw an uptick of his bill levels, Sam is going under the lights to help with some jaundice. Somehow, I'm just fine with that. Miles was jaundiced and looked like a pumpkin at Halloween. I'll take some lights to help Sam even more.
Two more things before I sign off for this update. One is a vagrant story that you can laugh at. The other is something we heard from the very first NICU nurse we met. Last night (well, this morning), Elisa and I had headed back after our 5:00PM feeding. This is usually our last chance to catch an hour of sleep before the day begins, and we got back, turned off the lights, and snuggled into...Elisa's hospital bed and my convertible chair/sofa/bed thingy. And then we heard it. My first thought was that someone on the post-partum level was in severe pain. A woman was moaning. Very loudly. Was she in pain? Having horrible post-partum depression? Did she get bad news?
I slid off to sleep. When we woke up, I asked Elisa if she heard Moaning Myrtle last night. A direct quote, Elisa said "oh yes. She sure was enjoying that sex." Ummm.... Suddenly, the moaning became clear. Some couple had obviously headed down to the vagrant section of the post-partum floor, probably figuring it to be abandoned. And they (Dr/Nurse, anyone?) definitely got it on. For the vagrants to hear. If anything, it makes you realize that the world does keep on turning, regardless of what's happening with your little one in a hospital NICU. So to Mr. & Mrs. Sex in the darkened hospital wing, the vagrants hope you enjoyed.
On a more serious note, I was reminded by Elisa of something our very first NICU nurse said when Sam entered their care. She said that he was a boy, and boys tend to focus on one thing at a time (I will ignore the actual truth of this from an adult male perspective). At the time, we wondered if Sam would do the same. Elisa said this morning (as we headed in for the news) that Sam had chosen feeding first. Now he was working on his heart and breathing. It gave me hope at the moment. And the hope paid off.
One of my favorite movies is The Shawshank Redemption. Very late in the movie, you hear a quote from the protagonist that reverberates with me every time I feel down about my little Sam. I'll leave it with you - because it's okay to hope that things will get better, even when it feels like they won't. Sometimes, it's the only thing pulling us out of bed through this last week.
Hope is a good thing. Maybe the best of things. And no good thing ever dies.
Damn right, little man. Damn right.
Brad
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