They tell me it’s Christmas Eve. To be honest, I wouldn’t know. No time for things like that. Not even time to sleep. Can’t sleep, not when one of them might need me. Only writing this now cuz a nurse, Amanda I think, gave me the notebook and said it might be good for me to write down everything that’s going on. Said that most families keep a journal. I just wonder if it’s to remember what they lost or to look back on what they’ve overcome.
Either way I’ve got it now and I need to do something to keep from going insane. So here’s my account of my first three days in hell.
I didn’t even get to hold Lana or Johnny before they brought them in this place and hooked them all up, sealing them away from the world. I haven’t even gotten to see their eyes because they’re all covered up to protect them from the bluish-purple lights they’re under to keep them from getting jaundiced. The doctors said they bruise from being born and their livers aren’t developed enough to break down the byproducts. So they have to be under the UVA lights to help them with that.
I still can’t believe all I’ve learned in just a few days. IVs, transfusions, humidifiers, blood gas levels and oximeters, ventilators, umbilical lines, transfusions…they’re so tiny, how can they possibly handle all this? I’ve been told they’re both critical, that there’s no guarantees…as if I needed anyone to remind me of that. I’ve already lost everything that ever mattered to me. I’ve already lost so much, I don’t need some nurse trying to “prepare me for the worst.”
As for my little angels, I guess I should write down every thing, though it’s not like I could ever forget.
John Paul Harvick was “born first” by caesarian Dec 22 at 1:52am and weighed 1lb 8 oz. He’s already lost some of that though. He measured 12 inches long. Can you believe that? My son, only a foot long. I’ve seen Smoke eat sandwiches bigger. Lana Michelle Harvick was born 3 minutes later at 1:55am and weighed 1lb 5 oz. She was only 10 3/4 inches long and she’s had a hard time from the beginning. They both have. But shortly after they…got her, she stopped breathing and it’s been touch and go ever since.
They’ve been through so much already, scans, transfusions, needles dozens of times a day. They’ve even had a few visitors, though I don’t know if they’ll be back. Clint was one of the first here, wanting to check us but from the look in his eyes when he finally did see them…I dunno that he’ll be back, in the NICU if at all. He did take my phone to answer calls though. It’s been too overwhelming trying to stay with them when everyone D or I’ve ever known seems to be trying to call. Now that Joyce won’t can’t be here…
I don’t blame her for hitting me. I don’t even hold it against her for blaming me. I promised her I’d take care of her daughter for the rest of her life and I can’t help but wonder if I could have done more, if I could have prevented this somehow. I just wish that nurse hadn’t told her it was the babies’ “fault.” She hasn’t been to see them since. I just hope she doesn’t continues to hold it against them because thanks to my stellar relationship with my dad…we don’t have much of anyone else.
~*~
Clint did come back by today. He brought back my phone and told me RC’s been trying to reach me. Funeral arrangements need to be made and…he’s offered to help. I signed something Clint brought so RC can do anything he needs. I know he’ll take care of her while I take care of them. Clint also told me Earnhardt took all the animals over to his house since Shifty and Athena need to get back to Kansas for Christmas. Apparently he called to help. I should thank him later…
I had some more visitors yesterday. First it was JG and to be honest, I was a little surprised to see him. I should’ve known though that with Ella…hell I never have really knew him. He’s the reason this hospital even stands and the fact that he not only came to see me but them too… Let’s just say I won’t be trash talking the Wonderboy any time soon.
Honestly I think it was worse for him because he couldn’t stay in the NICU too long. Man does have a soft heart and I think seeing them so small just got to him. He took off when my other set of visitors arrived. I have to admit I was a little surprised to see Rick and Linda Hendrick. But I shouldn’t have been. Those two always seem to be around anytime anyone is in need. I just didn’t expect Linda to be bringing me homemade meals.
I mention all this because I think they’re responsible for our visitor today. Lana still hasn’t been doing well as far as breathing. This morning we had a big scare because her O2 stats crashed again. They were afraid that the PDA had worsened or that she had a major lung bleed because x-rays showed lots of white area that could be fluid. An echocardiogram showed the PDA is closing as expected and the expert that just so happened to show up today found that it wasn’t another bleed. Apparently one of her lungs temporarily collapsed because they were trying to wean her from the ventilator too quickly. They also found a spot in her lungs they thought was a clot yesterday but it turns out that according to the neonatal expert it’s just part of the normal architecture of her heart.
I don’t think it’s a coincidence that this new doctor arrived just in time. I look back on it now and I remember hushed conversations between Jeff and Rick and quite a few pointed questions about Lana’s progress. So, whatever you did, thank you.
So, it’s 2008. I know this is a time many people make resolutions. For me, I think I have people I need to thank. Unfortunately, I know that no matter how I try I won’t get everyone because I know people have done things I don’t even know about. Clint has told me some, about Junior and Rick helping with KHI, about his sister, Kelley, and her little ones completely spoiling LO, I know JG has pulled strings to make my life here in the NICU easier and between Linda and Kim I’m far from starving. But that’s not what I feel I need to tell you about today.
I know I didn’t say much about–D’s funeral. I still don’t really want to talk about it but I need to let you know, everything you saw, everything that was done was just the way she would have wanted it and I have to thank RC for that. I can’t begin to express my gratitude, but I felt it needed to be said.
They are starting Johnny on the feeding tube today. Just a few drops of breast milk to try and get his stomach working the way it should. Lana was switched to the nasal vent today to get her ready. Her little lungs are still developing but she’s getting better each day, or at least I think so. I wish you could see how precious she is winking and blowing little bubbles. I’m just glad I can see their beautiful little eyes.
I can’t believe it’s been over two weeks. Even writing this, I don’t think I realized how long it’s been. I saw the calendar in the NICU today and it just hit me all of a sudden. It’s January. 2008. We’ve been through Christmas and New Years and testing is coming way too soon. How can I leave them? How can I even think of it? They’re still so fragile, so tiny.
Johnny seems to be taking the milk ok and they’ve started to give him just a fraction more. They stopped with Lana just for today to let her little tummy rest. God I hate how everything’s so hard for them. Every little thing’s such an accomplishment and I’m so proud of them for fighting so hard I just…wish they didn’t have to. They don’t deserve this. They’re so, so innocent.
I’ve been reading to them again. Honestly I read until I’m too hoarse to read anymore. It’s so easy to get used to the situation and I know I haven’t mentioned Lana’s breathing in awhile. But her O2 stats are still higher than they would like and when I’m talking to her, when she does hear my voice, they go down. That’s how fragile her situation is. And that’s why I can’t leave them alone.
~*~
I just got the first few restful hours of sleep since this all started and it’s all thanks to one person. I was pretty rundown this afternoon when everything hit hard–the way it sometimes does. I couldn’t have told you the last time I’d been to the hotel but I just couldn’t bear to leave, not now that I know they really, really do need me. Every moment I’m away from them I feel guilty that they’re all alone. But for a little while, for a few hours today, I didn’t have to. Thanks to Junior.
He was there when I left the NICU, and I’m still not sure why. But he was and after forcing me to eat..he offered to do the one thing no one else has. He went to be with them. Alone. I had to ask them to put him on the list as family, and not surprisingly no one argued with me. I guess it’s good to know the hospital’s “benefactor.” But I added him to the list, asked the nurses to help him go in on his own and, for a little while, I knew they’d be ok. It may sound silly, but I know he really cares about them. I’ve seen him talk to them both like they’re more than just sick preemies and for just a little while I let myself rest.
Some random things I forget to mention. Johnny loves to sleep on his stomach and today he was very active. He was stretching out his arms and legs and even got his knees up under him to push his little butt in the air. This is the first time I’ve seen him so active. Amanda said it was a good sign he was feeling better and she let me hold him again. He was definitely more feisty than the first time. I wrapped him up on my chest and stroked his back until he calmed down and then he did the most amazing thing.
He looked at me. Oh I know his eyes have been open awhile but you don’t understand. He really looked at me. And for a long moment everything really felt right in the world. He knew me, and he looked at me before finally settling down for a little nap. Swear if they’d let me I’d hold him all day. He’s just so tiny and precious and perfect just the way he is.
Let’s see, more facts. Lana has finally realized that she has a teddy bear and will sometimes reach out to curl her tiny fingers around its foot. She does the same thing with my finger and her grip is stronger than you’d think. As moody as she tends to be, I think she likes to have some kind of connection. I have a feeling when I finally do get to hold her I’m never going to be able to let her go.
In other news Clint’s told me he’s heard KHI is running smoothly. Jack and Ron seem to be getting along great, just like we all knew they would. I just hope they’re giving Junior a hand with the trucks. I really should find time to call them…. I’m worried he’s doing too much. June I mean. I asked Clint to make sure he’s taking care of himself. I don’t need him wearing himself out on my account.
Left as soon as testing was over. Should be home late tonight and I’ll head to the hospital. Testing went better than I expected and last night’s poker game helped more than they probably knew. Too bad about Gordon taking all Shifty’s money though. Gonna try and get some sleep on the way home.
~*~
Johnny was sleeping when I got here. Linda said he was pretty active today, squirmy and cooing but not fussing. I’m glad. He usually only gets really fussy when he’s uncomfortable. Lana was holding tight to her bear and held even tighter to me. I needed to hold her bad. Thank you June. Thank you for taking on Nationwide testing so I have this time.
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.
~*~
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…
Today is a really sad day. First off, let me say the kits are fine. Lana’s taken to her pacifier and doesn’t need the bag to help her breathe anymore and Johnny’s feedings are going well. He’s halfway through the next round of antibiotics and we’re keeping a watch on his eyes. They’re still both stable. But the baby, Mark, that was in the incubator a few away from Johnny is not.
Mark was born a month ago and was the same age and weight as Lana. He was one of three triplets but the only one that made it in here. He’s gone through so much of the same things as Lana and Johnny…you just get so used to everything in here. He died this morning. Breathing complications and a rupture of the lower intestine, the same things both of my angels have been fighting off.
I just want to spend every second with them I can. It’s gonna be a long, long five days in Daytona.
The NICU has been very quiet since yesterday. I think more than the babies needed to hear June’s lullaby last night. I just hope…I never have to see anything like what happened yesterday again, but I know there are no guarantees. Not here, not on the track, not in life. At least I know that they won’t be alone in this no matter what.
Still, it’s been a good day. Lana is off the breathing treatments completely. Her heart rate is still a little elevated but that’s just because all the steroids haven’t left her system yet. They checked her eyes, like they did Johnny’s and so far things are still inconclusive. Johnny’s follow up is tomorrow.
I know I should be more upbeat. With the exception of the tubes down their noses to keep them fed they don’t having anything else hindering them anymore. Lana’s still having a few “brachy” episodes a day but she’s come out of them all on her own. Johnny’s even on the verge of being 2 lbs and that is a huge milestone. He’s putting on weight again and I couldn’t be more proud. I just don’t want to go. Well, enough notes for today. I’m gonna go hold my angels until I can’t hold them anymore.
Don’t worry darlings. Daddy’s going to make you both proud. I love you both.
I can’t believe he won again. Ok, well, I can believe it, it’s just really good to see. Obviously he made the right move last year and I wouldn’t be surprised to see him in Victory Lane a few more times this week. Though, it would be nice to have something of my own to bring back to my angels. Turns out June is even more than a star than he knows. I can’t wait to fill him in on my phone call this morning.
They’re still monitoring Johnny’s eyes closely but besides that I really only have one more thing to “report.” I think I’ve mentioned here how much the kits have enjoyed June’s lullabies. Well apparently they aren’t the only ones. I talked to Amanda this morning and she told me that the other day when June was singing to the babies one of the other parents actually recorded him. At first I was worried they were some stalker fan or something but it turns out they didn’t even know who he was. It was just such a hard time for all of us in there with Mark’s death that…it was soothing for us all.
Anyway Amanda said that they made a copy of it and it’s now the NICU’s favorite lullaby. She told me that she and Linda have been playing it for Johnny and Lana and will continue to do so until I get back because it really does seem to calm them. So you see, Earnhardt really does seem to be a star wherever he goes. I just hope he doesn’t mind too much.
~*~
It just hit me it’s Valentine’s day.
I wish I could get back in the car.
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