Sometimes it’s nice to go back to where you came from. Last night I took Clint and Junior to one of my favorite Mexican restaurants out here. I can’t even tell you how welcome the margaritas were. Thankfully the kits were still doing well when we left and for a little while…I started to relax. Oh I still had my phone on the table and June’s iPhone open so we could keep an eye on them. But still, it was nice.
Talked to Linda this morning before testing and there haven’t been any “events.” I just hope things stay that way until I get home. In other news testing has gone well. Looks like all the CoT cars don’t suck after all. Who knew?
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Got back late tonight and got a more thorough update. They had the CPAP tubes in Lana’s nose again and they explained they were just trying to let her rest a few hours at a time because she’s still not gaining weight. Johnny’s doing a little better but with all the feeding issues he’s had he hasn’t gained as much as they’d like either. But overall…I’m saying they are doing ok. Both were sleeping peacefully when I got there but Johnny’s eyes fluttered when he heard my voice. I rubbed his back and talked to him for awhile until he fell back asleep.
Rest babies. Rest and grow my sweet angels.
Lana was wide awake this morning. I mention this because of all the sleeping she’s been doing. When I came in she was wearing the CPAP again but her eyes were wide and she started babbling the minute she saw me. That’s right, my baby girl knows her daddy. Amanda took her off the vent and I held her for a little over an hour before they wanted to hook her back up. They’ve been going with the on and off to try and let her rest more. I think she hates it because she got fussy the minute they put the tubes back in her nose. I talked them into letting me rock her a little longer and even though she was fussy at first she calmed down pretty quick.
Johnny got pretty noisy for him too. He started squirming while I was rocking Lana and for the first time it really seemed they were fighting for my attention. Normally only one of them is awake and wanting to be held at a time so for a few minutes I didn’t know what to do. Leave it to June to save the day.
Man really does have good timing. Right when I was trying to soothe Lana and Johnny started fussing he showed up and solved the whole thing. He ended up rocking Johnny while I tended to Lana and for awhile there it was a baby coo fest. Sweet little kits. I don’t see how anyone couldn’t adore them. Now if they could just grow so the nurses aren’t looking at them so worriedly I’d feel a little better.
Bear-a-palooza continues.
June came by again just as I was getting to change Johnny’s diaper. He’s been doing well lately and has actually gained a little weight. He’s getting close to the 2 lb mark and I’m told that’s a big one. Johnny’s become the healthiest little one in room 5 (the room for the most intensive care) and I get the feeling under other circumstances he might’ve already been moved to a less intensive care room. But I think they’re keeping him with his sister and for that I’m eternally grateful. I couldn’t imagine being split between them.
June brought some of that Pie in the Sky pizza he’s so fond of for lunch. I have to admit, it really is pretty good. Pity there isn’t one closer to Kernersville. After lunch he came back to the NICU with me and kept me company while I rocked Johnny. That’s when the sweetest thing happened. June was adding another bear to Lana’s collection and she caught hold of his finger and wouldn’t let go. She started crying soft and I know he had no clue what was going on. But I did. Baby girl wanted to be held.
I know he’d held Johnny a few times but it was a first for Lana. It was time for her to come off the CPAP anyway so Amanda came over and put her in his arms. At first I was almost worried he was going to drop her as nervous as he seemed to be. But once they got her settled with him she stopped fussing and made those little mewing sounds they both make when they’re happy. We’re still not completely out of the woods. Especially with her. But we’re getting there. We’re getting there.
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.
Flew down with Junior this morning. We both told the kits goodbye early. The nurses had us starting them with pacifiers for the first time last night. Before now they were too young to have a sucking and swallowing reflex. Turns out it’s something they’re going to have to learn. Lana didn’t seem to be too interested in it yet but Johnny really took to it. Linda told me they’re going to try to make them as comfortable as possible. I know what she meant. They’re used to being held and the next week is going to be tough on us all. This morning though Johnny was suckling happily on his pacifier and Lana was holding tight to her bear. It’s almost like they were trying to tell us they were gonna be strong.
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I have to thank you all for keeping things as quiet as possible. The media had a few questions, but it was obvious how little they knew. I’m just glad for the most part it’s all been focused on the racing. I got back late tonight and both kits were already asleep. At least I’ll get one more day before I have to go back down for the weekend.
Lana has had it with the CPAP. She started fussing this morning and got it pulled off twice. I think she’s more like me every day. Finally the nurses gave up and the doctors decided to let her try and go without it. The advantage to it was it helped keep her lungs expanded so she didn’t have to do as much work on her own. As substitute, they’re going to use a bag that forces air into her lungs to expand them every two hours. My girl’s a fighter. I don’t think there’s any doubt about that.
Johnny’s cultures came back from the other day and it turns out he did have another infection brewing. Just in case they’d slowed but didn’t stop his feedings. Looks like they made the right choice this time because it looks like they got it before it got too bad. I don’t think they’re going to have to restart his feedings again. They said as long as he keeps processing the milk, he’s going to be ok.
Oh, one more thing. The papers Clint had drawn up for me were delivered today. I didn’t even know they were coming. I guess he knew this was where I’d be so he had them sent here. I’m really glad it’s been taken care of so quick. I need to give him and June a call. Maybe we can have this done before I even get in the car again. From what I caught of the Shootout practice tonight it looks like it’s going to be a wild weekend.
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.
I’m starting to get worried. I got a call this morning that the doctors want to talk to me as soon as I get back to Charlotte. They didn’t want to say anything else and that’s just killing me. They still look ok, but I know looks can be deceiving. Right now I just want to get home. All I have to do is wait for qualifying to be over and I’m out of here.
I will admit last night was nice. Junior started taking pictures with his phone “for the kits” so I retaliated. I should’ve known for things to go so well something had to be going wrong.
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I really hate the way doctors deal with things. Nothing is critical yet, but it could get there. They just had to give me a heart attack because the doctor wanted to talk to me before he left town. Yeah, thanks doc. Give me a heart attack all the way back from Daytona. I probably drove Clint and June nuts freaking out.
Anyway, it turns out they’re more worried about Johnny’s eyes than I thought. They’re saying laser surgery could come into play and they wanted the doctor who would do the procedure to talk to me face to face. The problem that can happen with early preemies and the high oxygen therapy is the blood vessels in their eyes can get confused and grow into the cornea. This is what’s starting to happen. Sometimes this corrects itself but if it doesn’t they may have to take aggressive action. They want me to be prepared because the treatment is using a laser to burn away the periphery of the retina to slow the growth of abnormal blood vessels. The bad part? This also permanently destroys some peripheral vision. That’s what I have to be prepared for…partially blinding my boy.
I’m…not sure I’m ready for this. And, I’m cutting this short. One of the other babies here isn’t doing so well…
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