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…
We had a big scare with Lana this morning. Her O2 stats went way down. Apparently she wasn’t getting enough oxygen from the ventilator and all kind of alarms were going off. Before I knew what was happening they had her off for more scans and it turns out there was a bleed in her lungs. They’re monitoring her even closer to see if she needs surgery. God I hope not. Just from the sympathetic looks on the nurses’ faces I know she’d never survive it. They said it could stop on its own so…I’ll just keep praying. God please don’t take my baby girl.
~*~
They did some more tests and it turns out that Lana has a condition called PDA. They tell me it’s a heart condition where the blood vessels that connect the aorta and pulmonary arteries don’t close. This means her lungs aren’t getting all the blood they should and it could be what was causing the bleed they found. They say this can usually be closed with medication and they’ve already started it.
Johnny’s had a good day today though. He’s still under the UVA lights, just like his sister but he doesn’t look as shiny and puffy as he did yesterday. His red blood cell count was low again so they gave him another transfusion but I’ve been told they both may have quite a few of those before this is all over. It all feels so much like a roller coaster. At least for the moment things seem to be…stable.
~*~
I had a surprise visitor tonight. Honestly, I can’t believe anyone would come by on Christmas, but when I left the NICU to get some coffee, there he was…and for some reason he didn’t seem so out of place. He told me that all the animals were doing fine and that Bebe started chasing the buffalo until the longhorns got involved and scared her out of the pasture. I think that was the first time I’ve smiled in days. The second was when he asked to see them and actually looked at them with something besides pity or disgust on his face.
I know the nurses have been bending the rules for the visitors I’ve had but he’s the only one that’s really been worth the trouble. He stayed for about an hour, asking me about all the wires and tubes and then…actually…talking to them. I’m still not sure why, but it was…nice to have someone to share it with. It wasn’t until Johnny and Lana’s stats were the best they’ve been since they were born that he reminded me what tomorrow was…and I couldn’t get out of there fast enough.
You’re supposed to be fairly sterile in the NICU. That means you shouldn’t be crying in there. I was barely able to make it to the hall before I broke down and cried and cried and cried. I bury her tomorrow and for the first time…it hit me. I didn’t even realize it was his shoulder I was crying on until long after the tears dried up. Honestly, I think I passed out there on the floor in his arms for awhile. But considering I hadn’t left the hospital in days…
I didn’t want to go. I sure as hell didn’t want to go back to Kernersville. But he was right. I needed to clean up. I needed to get a suit and pack some clothes. Shifty had only really brought me an over night bag before. I needed to really pack, and I needed to get out of that house as fast as I could. Too much, just too much. When will I ever run out of tears? I know I passed out on the way back to the hospital. I was just…so tired.
He wanted to take me to a hotel but I refused until I saw Johnny and Lana were still critically stable. I wanted to stay. But somehow, and I’m still not sure how he convinced me to let him take me to the hotel next door. Apparently there was already a room ready for me. I’m setting the alarm for 3 hours. I need to get back to them before the funeral. They need to hear more about their Momma–
Today I buried the love of my life.
The one who knew everything, who shared everything, the one who was supposed to be by my side until the day I died. I never imagined she could go first. I never imagined I’d ever spend a day without her. Except for road courses. She always hated those. She couldn’t stand being so close and not being able to see me. So those were her weekends, along with testing. But I still saw her after testing, at least most days I did. She just would stay to take care of KHI. Oh hell, KHI….
Can’t think about that now. Not when they’re taking the babies for scans to look for brain bleeds. That’s a common thing for babies as teeny as mine. Tiny little kits. That’s what June called them. Said they reminded him of newborn kittens, especially since their eyes are still all covered up. And why the hell am I writing about kittens when D is dead in the ground?
Can’t do this now. Need to–
Passed out at the hospital again yesterday. Turned out worried as they were about Lana, it was Johnny who had the grade I brain bleed. He’d been doing so well or, maybe I’m just used to it all too much. He was under even closer watch all night, but so far, he’s pulled through. They told me it could’ve been so much worse and that grade I normally corrects itself. This morning it seems like it has. All I know is I’m really hoarse. I just hope they really do hear me because…there’s so much to still tell them.
But that’s not the big news. The big news is I can finally tell you that right now he has his Momma’s beautiful blue eyes. That’s right, no more phototherapy for my baby boy. They’ve also reduced the humidity on them both. They said they wanted to keep Lana under the lights at least another day. Hopefully tomorrow I’ll be looking into her beautiful eyes. I can’t even express…what it means to know he’s looking at me but I have to wonder…what does he see?
I just hope he knows he’s loved. I hope they both do. They do have their first presents inside their incubators now. I forgot to mention that. When I came back yesterday the nurses had put the tiny pink and blue bears inside their incubators with them. For now they’re still wrapped in plastic but at least…they have something. Thank you June. And thank you for sharing these entries. He asked me yesterday if he could and I figured it’d be the best way to let everyone know how Lana and Johnny are doing.
Thank you all for everything.
Went back to the hotel last night once both kits were sleeping. Earnhardt wouldn’t stand for less. He finally convinced me to have mercy on the nurses and take a shower so I came back and slept for about four hours before heading back. That’s when they told me how they were wanting to try and start them on “food.” They’ll be fed through a feeding tube, and it will only be a few drops at first but…God I’ve never felt so useless.
It turns out, tiny as they are, they can’t handle “formula.” No, the only thing their little systems can handle is breast milk, just one more thing of many I can’t provide them. They’ll have to depend on a “donor,” and the very thought is tearing me up. D should be the one that’s here with them. Not me. D would know how to handle this so much better than me. Hell, at least she could do something for them besides just sit here useless.
It still should be her here instead of me.
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 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–
~*~
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 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.
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.
Today a doctor came to talk to me about the kits’ breathing. They’ve both been on ventilators or, as in Johnny’s case, CPAP for almost a month. Honestly, I didn’t think much about it. I just though it was normal for them. But today I found out that the high pressures can permanently damage their little lungs and cause a chronic condition called BRD or Bronchopulmonary Dysplasia. They told me this usually happens if they’ve been on the vent more than 28 days. Johnny’s on day 27 and Lana isn’t even close to coming off. That’s why they’ve started giving Johnny a low level of steroids to try and get him off as soon as possible.
They told me they’re going to try and take Johnny off the nasal vent tonight or tomorrow. I’m thankful for that but…afraid of what comes next. They said without the vent to back him up we’ll have to be watching for apnea (not breathing) which can lead to brachycardia (heart beat dropping off). He’ll be on monitors, of course, but it still scares me to death. How can I possibly leave their sides when they could stop breathing?
~*~
I have to admit, I’m feeling a little better. Oh, I’m still terrified of the possible consequences, but after seeing June’s face when he saw Johnny off the vent…it made me smile. It’s the first time we’ve seen his face completely uncovered and, it was really nice to get to share that with someone. He also got to see Lana clutching tight to the little bear he brought her and I’m glad. I swear they were both on their best behavior while he was here. I wish he could be here more often.
He’s going back down to Daytona tomorrow to test with Cale. He wanted to talk more with me about it but…I’m just not ready. I know I shouldn’t be dumping it all on him, but right now I can’t even think about KHI without thinking of– I’m just not ready.
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