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.
They’ve stopped feeding Johnny milk today. It turns out his stomach isn’t emptying but this isn’t unexpected. They told me their main goal right now is to get his stomach primed for later. They plan on resuming the feeling later tonight but at .25cc/hr instead of the .5cc/hr they did before. His red count was low again so he got another transfusion. They say he may have to have several more before it’s all over with.
Lana’s bilirubin levels are still elevated. The genetic tests came back and they’re fairly certain that it’s not a congenital thing. No, they think she’s got a virus that is causing all the problems and since they really can’t treat a virus…we just have to let it run its course. My poor sweet girl. Her eyes are completely open now. Dunno if I mentioned that before. She’s beautiful, even if a little moody. She really doesn’t like to be disturbed when she’s sleeping. That’s one thing I’ve learned. She gets particularly fussy if the nurses wake her to check her stats or draw blood. I guess she really is my daughter.
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June called after his commercial shoot tonight. He said it’s all “top secret” but that he had to deal with some interesting wildlife. I guess I’ll leave it at that since I’m not supposed to tell. It was nice to smile though, if only for a little while.
They’ve started feeding Lana milk today, but just a very small amount. They’ve started her on the same low dosage her brother’s on, not wanting to overwhelm her. She seems to be moving around a little more and this afternoon she was on her stomach. Both of them have started curling their limbs against their bodies and Karen, one of the nurses, said that was a good sign of muscle tone and performance. I can’t even begin to describe how adorable Johnny is when he stretches. Sometimes they remind me even more of “kits” the way they curl and stretch.
Lana was running a low fever today, presumably from the virus. But her bilirubin levels are starting to drop slightly. That’s my girl. Fight it off. Make your Momma proud. She loved you so, so much. I just wish–
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June was here tonight. I think he’s here, most nights. Honestly he and Shifty are probably the two constants I have besides my little angels. Junior takes the pages from my notebook and does, whatever he does with them and Clint calls me everyday to just, talk. I know I don’t spend a lot of time writing it here because this is supposed to be about them but sometimes it’s still so…overwhelming. Sometimes I just can’t stop the tears. I still miss her so much. Sometimes I wonder if I’ve even had the chance to grieve–
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.
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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.
Today is officially one of the best days of my life.
Today I held my son for the very first time. And before you ask, yes he is still all connected to everything, the vent, the PICC line and OG tube. But I still got to hold him. The nurses took and put him right on my chest and my god he was so tiny. They call it “kangaroo care” because once she put him on my bare chest I wrapped my shirt around him. And he slept. Oh God he slept so peacefully. I didn’t want to disturb him so I hummed some random tune and he seemed to relax completely.
I can’t even begin to describe how wonderful it was. The way he curled against me, so, so tiny and precious. My Johnny. My boy. I remember when I first saw them, I remember how all the tubes and wires scared me and I couldn’t even imagine touching them much less holding one of them for over an hour on my chest. But it was amazing and it was perfect, just like they are. And after having that time with him…I’m hard pressed to imagine things any other way and I know that sounds insane after everything we’ve been through. But then I think about all the time I’ve had with them, and the way they both look up at me, how they know my voice and it’s so hard to imagine anything else. I swear he knew me even before I held him. I just want to be able to do the same with my beautiful baby girl.
And I will. I know I will. Her fever is gone now and the bilirubin levels are almost where they want them to be. She’s winning, just like I knew she would. They’ve started her on milk again, just the tiniest amount. They’re giving Johnny more and he still seems to be doing well. I just hope things continue this way because for the first time in a long time…I can really imagine leaving this place.
I think I spoke too soon. Yesterday everything seemed to be going so well. Clint even stopped by to say hi before heading to Daytona. He didn’t come into the NICU, not like June did later, but it was still nice to see him. I hope his testing goes well because…I can’t even think about next week. Not after what happened this afternoon.
I know I’ve mentioned Johnny’s feeding’s been moving alone steadily. He’s being fed through the OG tube in his throat, just like Lana, and until now everything seemed to be moving along great. That’s when I noticed his tummy seemed to be pushed out a little more than I’ve ever seen. The nurses ended up calling in the doctor and they all got very worried, very fast. I swear I don’t know what’s worse, trying to read their faces or actually getting the news.
It turns out they’d started trying to mix formula with the breast milk which is all very common procedure…when there isn’t a mother to provide enough milk. That in itself shouldn’t be a problem. The issue now is they’re afraid he may be developing NEC, necrotizing enterocolitis. God even the name sounds horrible. They say it’s a deterioration of the intestinal tract that happens when it becomes inflamed or has decreased blood supply. The problem is it can lead to a rupture and if that happened–
I’m just glad June stopped by after his trip down to Daytona because it’s all so fucking much. They’ve put Johnny on antibiotics and stopped the milk feedings for now. They’re also talking about another transfusion to try and help treat the infection. I swear, wasn’t it just yesterday he was curled up on my chest and everything was right in the world? He’s gonna be ok. He has to. Like June said earlier, he’s a Harvick, he’s too stubborn to know how to quit.
There’s never a dull moment. Today they took Lana off the jet vent and put her back on the conventional ventilator. Her O2 stats were elevated again and x-rays showed areas that could be fluid or a partial collapse. The conventional vent is supposed to be better at treating this. The doc told me today that it’s likely that with the respiration issues she’s had it’s very likely she’ll have complications for the first year or so, but that she should out grow it. I think that’s the first time I’ve had someone talk that long term to me. That has to be a good sign, right?
Anyway, her bilirubin levels are still dropping. It looks like whatever it was that caused the elevated levels is going away. They’re also starting her on a steroid and an asthma medication to help her breathing. Also, I need to say, she’s as much a Harvick as her bother. Every time the nurses go to mess with her I swear she finds a way to put up a little struggle. Unfortunately they told me, it’s still going to be awhile before I can hold her, but they will let me touch her now. I swear, just like Johnny, she seems to know my touch from that of the nurses. I should hope so. I’m the only one not sticking her with things.
Johnny’s on a triple cocktail of antibiotics and they’re wanting to do a platelet transfusion as soon he’s able to handle it. They said they want to wait at least another day before I get to hold him again and I’ll admit, it’s hard to swallow. I can tell he’s uncomfortable and I’m doing my best to keep him calm.
Junior stopped by again tonight and ordered me to go eat. I tried to wave him off but something in his eyes made me stop. I honestly think after yesterday he needed to see them. Or maybe I’m just imagining it. Either way I didn’t turn him down. I couldn’t. Especially since I know my sweet “kits” seem to like it when he’s near. I found that out the last time he looked after them. Amanda told me that she heard him singing to them and that they both seemed so much calmer, especially Lana. I’m not much for singing but I know from experience they seem to calm down more when I’m talking to them. That’s why I’ve hardly got a voice left. According to Amanda they seem to do the same for him.
Good news about Johnny. It turns out the antibiotics helped and that they caught his problems in time to prevent NEC from developing. They told me they’ll be keeping a close watch on him as they’ve started his feedings again. After everything that happened though they’re starting him off at a very, very low rate as if he’s not had the milk before. Basically it’s like starting over. They also told me that I’ll be able to hold him again and I’m already itching for that. I need to feel him in my arms again.
Lana’s glucose was up today but they told me that’s a side-effect of the steroids and it was easy to correct. She’s also had her milk intake increased because she seems to be digesting it well. Thankfully she hasn’t seemed to show the same problems as Johnny, but Amanda did tell me that as immature as her lungs are she’s going to be risking infection daily. Apparently the steroids weaken her immune system, but I have faith in her. She’s already fought through so much.
Oh, one more thing I forgot to mention. They’ve changed the vent that Johnny’s on. Now he’s on one that allows him to start breathing on his own and only kicks in when he needs it. This is a huge accomplishment as far as his breathing goes and if he does well we make actually get to start thinking about taking him off the vent. Honestly I think that scares me as much as it thrills me. At least when he’s on the ventilator I know he’s not going to stop breathing. I’ll keep you informed.
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.
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.
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