We’ve hit three weeks!!! Another huge milestone and another day for firsts. I got to change Johnny’s diaper for the first time. I know that may sound awful and there was a time in my life I’d have done anything to avoid changing a baby’s diaper. But this is my boy, and just the fact that he’s processing the milk is an accomplishment. He’s still on a very, very low dose as they’re starting his feedings all over but he’s growing, and that in itself is amazingly good news.
I also have some good news about Lana. Today they changed the settings on her vent so that, like Johnny, it’ll allow her to start trying to breathe on her own, kicking in only if she needs it. I know we’ve still got a long way to go with her tiny little lungs, but she’s getting there.
Talked to Clint and he’s taking care of things that I’m not going to mention here now. Maybe later. I just wish I could do more than I have. There won’t be any visitors today I don’t think. Something about media stuff in Daytona or Tennessee. I really haven’t been keeping track. I know I still have some media obligations coming up. I’m just glad I glad I got some of it out of the way…back in December. Not gonna think about that now. Or about Monday. Not when they still need me.
I never thought testing would end. Hell I never thought the plane would touch down in Charlotte. Even the drive from the airport seemed to take forever. All I could think about was getting to them and I couldn’t get here fast enough. I had a fan fest thing tonight but they’re just going to have to deal without me. I’ll be back in the morning to finish testing but tonight my babies need me.
How can they look so different in less than 2 day’s time? Lana is pale and splotchy, the way she always gets when she’s agitated and one look tells me Johnny’s tummy is bothering him. Turns out Lana does have a bacterial infection and they’re taking a culture of her lungs to see if its spread to them. Johnny is primarily back on the glucose IV drip and it all feels like 2 steps backwards. I just need to make them better. I need them to be ok.
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Read them a book I found in the gift shop because there’s only so much you can talk about testing before you’re ready to shoot yourself in the head. June called to check on them and told me fan fest was the usual boring ass questions. Said people seemed to be ok with my absence, not that I really cared either way. Still, it was nice to hear his voice. Clint’s too. His project’s progressing well and he said it should be done in time. I’ll mention it here when it’s finished.
People may think I’m crazy but I swear they’ve gotten better since I’ve been here. I may not be able to kill the bacteria attacking my baby girl but her color is definitely better. And it may be coincidence but Johnny finally was ready for another diaper change tonight. They say there’s no signs of infection with him and it may have just been that it’s taking awhile longer for his system to get fully adjusted to the milk. They plan on trying to continue it again tomorrow.
I know need sleep for tomorrow, but I can always get some on the plane. For now, I think I’m going read a few more chapters. I need them to get their own rest and if I can provide some comfort for them, then that’s exactly what I’m going to do.
It just hit me that the kits are over a month old. If you only knew how many times I was told what a milestone that was. I think they were actually trying to prepare me in case something bad happened. They didn’t have to. I’ve cherished every single day with my little angels. I didn’t need anyone to tell me to do that.
We’re a little concerned about Johnny. It turns out one of the routine cultures they did turned up positive for infection. He doesn’t seem to be showing any signs of being sick though so they’re thinking the positive culture could’ve been from the needle on his skin instead of his blood. Either way they’re treating him with antibiotics just in case. They’re also starting to scan both of them for other developing issues.
The first thing they’re trying to check are their eyes. Apparently the high oxygen levels they’ve spent so much time in can hurt the development in their eyes. I don’t have all the details but I figure if it becomes an issue I’ll learn. If not…why worry about something that doesn’t matter? I have enough to worry about watching Lana’s every breath.
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June stopped by tonight and it was really good to see him. He doesn’t believe me but I swear their stats improved hearing his voice. I even left him with them awhile to go get something to eat. Ok, who am I kidding, he ordered me out to go eat. Said he already had. Honestly, I wonder if he wanted some time alone with them. I could be wrong, but if he did, how could I possibly deprive them of someone who really cares? When I came back I actually caught the end of a lullaby. Johnny was sleeping soundly and Lana had her hand curled tight around June’s finger. They missed him. I think we all missed him.
It’s official. Lana hates the CPAP. Her poor little nose is irritated with it being taken on and off and her cheeks are raw from the tape. She’s actually pulled it off twice and I’m worried they might try and put the vent back in. Stubborn little girl, you’re too much like your daddy. Right now they have it on very low pressure and I think they’re going to leave it on a little longer instead of taking it on and off. Poor baby girl. Hang in there. They’re also trying to lower her steroids more because of her blood pressure so full time with the air might not be a bad thing.
Both of them had brain scans today and since they found no bleeds they told me that the chances of either of them developing anymore are extremely low. Finally we seem to be out of the woods for one thing. They are a little concerned about Johnny’s eyes though. Told me that he’s starting to show some evidence of mild to moderate eye problems. They said it can still resolve itself but that about 20% of babies with his condition require treatment. The bad part of treatment is in about 1-2% it can cause blindness. I’m just gonna keep praying it fixes itself.
I’m starting to get a little more anxious about Daytona. I just found out today they want me in New York on the sixth for a mini media tour for the Daytona 500 Champion. Clint offered to go as the “upside down on fire finisher” but I doubt they’d go for it. The trip shouldn’t take all day but then it’s back down to Daytona. I just wish they didn’t have to be alone.
Lana’s getting another transfusion today. She’s showing signs of anemia with a heart murmur and an elevated heart rate. They’re scheduling her for a follow-up echocardiogram to take another look at the potential clot they saw awhile back. She’s finished with her last antibiotic treatment and they took that IV out of her arm. It could just be me but I think she’s starting to fill out a little more in the face. Maybe I’ll ask June if he comes by.
Johnny’s been a little fussy today. When he put him back in his incubator he’d start crying and fussing, but when I put my hand over his tummy he’d stop and go back to sleep…until I took my hand away. The nurses think he could be getting another infection so they may be starting him on another round of antibiotics. He’s still taking his food well so I hope he’s just having a bad day. Cultures will tell soon enough.
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June came by again today. He brought up something that really has me floored. I’m gonna think about it for a little while before I mention it here. I’m off to New York in the morning.
New York is New York and I still can’t believe anyone really wants to live here. People have been nice enough and seemed to be understanding. I’m just glad they pretty much kept the questions about racing and not my personal life. I will say the travel has given me some time to get some things straight in my head and let me make probably the most important decision I’ve ever had to make. More on that later because I need to talk to someone else first.
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If I hadn’t had my decision made already I would’ve when I got back. I didn’t even know he was going to be here today. I sure as heck didn’t expect him here without me. But the first thing I saw when I got to the NICU was June cuddling Johnny on his chest and singing to them both softly. That’s when I knew I made the right decision.
I’ll mention it here because it involves the kits but that’s the only reason. June’s going to be their godfather. I talked to Clint on the way back and he said he’d talk to the lawyers for me so I can get my will updated. For the first time in a long time I feel like a weight’s off my chest. I don’t care what anyone thinks, I need to know they’ll be taken care of and I know damn well if anything happened to me he’d make sure of it. That’s all I’m saying about it.
Lana looks really good after her transfusion. I guess she was just running “a quart low.” Johnny seems to be doing much better today too. Gonna go spend more time with them before media day tomorrow.
Made it down just in time for practice and as usual restrictor practice is not our day. But it still felt good to be in the car. I think that’s the first time this year that’s happened. But they were so peaceful when I left, it made it so much easier. For the first time the doctors told me they were both really stable…and the fact I can see them anytime I want doesn’t hurt either.
Oh I know you all know about the web cam but dammit if Earnhardt didn’t go a step further. He had an iPhone waiting for me when I got down here already hooked up. Now I can even see them when I’m waiting in my car to go out on the track. I just hope somehow they know their Daddy is watching them.
Clint said he’s got someone here so we can sign the papers and make everything official during the break between practices. I hope you’re sure about this Earnhardt. I really, really do.
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Holy crap he actually won! First race out of the box. I’m happy for him. I’m just glad we weren’t too much of a distraction. Checked in on the kits and they’re still doing well. They’re still monitoring Johnny’s eyes, especially his right, but they’re doing good.
I’m gonna go get Shifty and see if the media is still eating Earnhardt alive. I need to let him know how happy I am for him.
For the first time in my life I can honestly say I’m glad I didn’t win the Daytona 500. There’s no way I could’ve handled being away another day. Since I’ve been back I’ve held them both and I swear I didn’t want to put either one down. Lana and Johnny both woke up when they heard my voice and I’m really glad June came to check in on them because they won’t let me hold them both at once. This way he could hold Johnny while I rocked Lana back to sleep.
They’re bigger. Johnny more so than Lana, but they are definitely bigger. Johnny hit the 2 lb mark this morning and June must’ve found out somehow because he showed up with a “2 lb bear.” Johnny was hanging on to it while June rocked him so I guess he approves. Lana has gained enough for me to tell by holding her but she’s still on the light side. They think it’s just because she’s still adjusting to breathing completely on her own and that she should be putting on more weight soon. I hope so. She still seems so tiny and fragile…until you look at her eyes. There’s fight in her. June says she reminds him of me.
As for their eyes…Lana still seems to be looking ok but Johnny…they want to do surgery on his right eye tomorrow. This is the laser surgery I mentioned. I’m terrified. There’s significant risk to the procedure but the alternative is blindness. I don’t feel like I have a choice. I’m just glad we aren’t alone.