5 weeks, 1 day

Yes, I have resorted to naming my posts based on how much time we’ve spent in the NICU. I’m sleepy and have no creativity left. But my socks are neon pink and orange with stripes so think about those if you need any excitement in your life.

My last update was kind of a bummer. Joshua had had a really rough week. This week he is doing much better – he even got off the vent! He is now on a fancy new machine, the NIPPV. We call it the Nip-Vee because it sounds funnier that way but you’re supposed to say each of the letters. Anyway, the Nip-Vee is the step between the CPAP and ventilator – the Switzerland of the group, if you will. It gives Joshua a specific number of breaths but he has to do most of the work on his own if he wants candy. He’s tolerating it very well and looks like a stormtrooper again with his mask over his face.

But, Kristen, you’re probably thinking, What about you?

Oh, thank you for asking. You’re too kind.

I’m doing okay. When I last wrote, I told you how I was feeling numb to everything and how it was kind of a relief. I’ve stopped doing that now. Well, it kind of comes and goes. Some days I feel numb. Some days I feel like I could win an Oscar for the amount of emotion I display. It’s very weird. I never know what will make me cry. The other day I cried over the color yellow. Yellow, people. It’s an emotionally abusive color.

So I guess it’s kind of a lateral move, but it’s a move at any rate. And speaking of moving, we did that this weekend, too. I am listening to a bunch of guys make construction jokes as they hang up cabinets in our new kitchen.

I think that is what has been hardest this week. 6 weeks ago we had just celebrated Valentine’s Day. I was worrying about where to put the crib in the baby’s room but I knew I had plenty of time to figure it out. I was planning a weekend trip to celebrate our anniversary and figuring out if I needed to get just one or two more maternity tops for the hotter months.

And in an hour, that all changed. Every single bit of it. Our lives did a complete 180 the moment I was sent to the hospital Friday morning.

We keep hearing how lucky we are to meet our son so early and how wonderful it is that he’s doing so well. People encourage us to look at the silver lining. I want to see the silver lining. I really do. And there have been a lot of blessings through this and everyone has been so supportive. But I feel abandoned by God.

I hate that because it feels so incredibly selfish, especially on Easter weekend when we’re celebrating Jesus’ ultimate sacrifice for us. I know everything belongs to God and that He is good no matter what the circumstances are. But these days I feel so far from Him. I have been praying for other people but God and I both know I’m keeping everything at the least personal level I can. I want to stop that because I know it isn’t right. Life isn’t fair and that has always been true.

I just want things to be the way they were, when our baby was healthy and our lives made more sense. I want to go back to worrying about whether the doctors on Grey’s Anatomy are really going to buy the hospital and how many newborn outfits Josh will really need because he might grow out of them too fast. This just wasn’t the plan.

I know I can’t go back. Only forward. My sister-in-law wisely pointed out that looking back only turns you into a pillar of salt. Soon this plan will make sense. Someday I will understand. And until then I’ll just keep a lot of tissues nearby and eat Easter candy.

By the way, the doctors on Grey’s Anatomy DID buy the hospital. I didn’t want to leave you hanging.

Life in the NICU

Have you ever watched your baby stop breathing and seen him turn purple? I have. But, oddly, it wasn’t scary. It wasn’t anything. At first I wanted to run from the room and never come back but after a few minutes I calmed down. And then I wasn’t scared. I wasn’t sad. I wasn’t mad or glad or plaid. I was just numb.

Ever since Josh stopped breathing – twice – and they had to work to bring him back – twice – I have felt nothing. Seriously. Nothing. I have gone through the motions of some stuff – being excited when something goes well; looking concerned when they tell us he might have a new issue. But I really just don’t feel anything. 

At first I thought it was a defense mechanism. I thought Cowboy Debbie was riding strong. But I don’t think that’s it. Honestly, my first reaction yesterday was to cry. But my eyes are tired of crying. I think I heard one of my tear ducts sigh when I started to well up. So I stopped. And went to feeling numb. It was just easier. 

A family member messaged me on FB and told me of his experience in the NICU when his daughter was born and had to stay in the NICU for a few months. He said a lot of really helpful things, but one thing really struck a chord with me: He was afraid to get attached to his little girl because it felt like at any moment she could be taken away. 

As I read that, I realized that is the only thing I do feel these days: Fear. I am afraid to get attached to Joshua. I love him with all of my heart. But I am afraid to lose him and so I am numb. It seems like all it would take is one alarm, one infection, one bad x-ray and he’d be gone forever. I hate that. I hate it so much but I don’t know what to do about it. Yesterday I noticed that his little upper lip has a very unique shape to it. It was so cute. But I hate that I noticed it because if the worst does happen, it would be just one more thing I would miss. 

We have no reason to believe that Josh won’t make it through all of this and come home with us at the end of May. He’s had a lot of setbacks this week but he is still doing pretty well overall. He’s just so fragile. And I am fragile. And it’s too hard to be attached to him. 

I don’t know what that says about me. I’m sure the local PTA is on its way to my house to present my Mother of the Year award. I don’t feel gloomy or down or sad or stressed. I can’t. It’s kind of a relief, even though I know that isn’t the best thing for me or for Josh. But that’s where I am. That’s life in the NICU. 

Sorry, Mom. This one was a bummer. Have a picture of Josh to make up for it. 

And then there were three

A month ago at this time I was recovering from the emergency C-section that brought Joshua into the world. They told me I couldn’t see him until the next day. We still hadn’t heard from the doctor. All we knew was that Joshua was here and he was very sick. I was begging the nurse to let me see him right then but I had to wait until my blood pressure came down. Good times.

I have been thinking about that day a lot recently. I never really had the chance to process everything. At the time it was also such a shock and felt so unreal. Then we were just watching and waiting and praying Josh would make it for the first few hours. And I just never thought about it. So I decided to write it down, to help me remember in the future and maybe help me process it. I have been having a lot of nightmares about the whole experience lately and I think this will help with that, too.

On Friday, February 22nd, I had my monthly check-up at my OB’s office. I was aggravated that I had to go because I would be late for work and I was trying to save up my extra hours for when the baby came. Although to be fair, I guess I did use those hours for the baby, after all. When I got to my OB’s office, the nurse took my blood pressure. I was already on meds for high blood pressure, which had only become an issue since I had gotten pregnant. The meds had been helping but I guess they weren’t helping anymore because my blood pressure was high. That combined with the swelling in my feet and legs, massive headache, and pain in my right side led the nurse-midwife to believe that I had developed pre-eclampsia. She didn’t want to wait for me to do my labs on Monday, so she said I had to go to Gwinnett Medical, where I was supposed to have Josh, for them to do tests.

I was even more annoyed then. I was going to miss a whole day of work. I texted Daniel and called my mom. I was fine for most of the drive to the hospital. Then when I called my sister-in-law to let her know what was going on, I started to cry. I felt like I had endangered Joshua with my high blood pressure and that broke my heart.

At Gwinnett Medical, Daniel and my mom both arrived just before they took me to a room. The nurse didn’t think they would even want to keep me overnight but they wanted to wait for an ultrasound before they let me leave. They did the ultrasound and noticed Josh wasn’t moving very much. He had a low heartbeat and nothing they did made him wake up. I realized then that I hadn’t felt him moving very much in the last few days. I hadn’t thought anything of it at the time. But that combined with his low activity level meant something wasn’t right.

The doctor came in and said we were to head to Northside Hospital immediately. There was a perinatalogist (which is fancy talk for a doctor that specializes in babies who are still cooking) that they wanted me to see. He was going to come to Gwinnett but he could get to Northside faster.

When we got to Northside, it finally dawned on me how sick Josh was when the doctor told me the perinatalogist was on his way from Monroe and was driving as fast as he could to get to the hospital. Until then I kind of thought they were overreacting. But the doctors and nurses were very concerned. There was a machine to monitor Josh’s heart rate and the nurse said it was the flattest strip she had ever seen, meaning his heart was barely beating.

The specialist arrived and did a special ultrasound. He said he was looking for how much Josh was moving, how fast his heartbeat was, and if he was getting enough nutrition from the placenta.

We were 0 for 3. He wasn’t moving, his heartbeat was slow, and he was only getting intermittent blood flow from the placenta, meaning he wasn’t getting enough nutrition. The specialist told me at the very least they would try to wait to deliver Joshua for a few more days. The only reason they would have to deliver him that night was if the blood flow from the placenta reversed, which would mean he was getting no nutrition.

I was trying to read the scan and I noticed there were some spots that were brighter than others. I asked if that was significant. He said he would explain it to me, and then, as he pointed to the screen, we all saw it. The blood flow had just reversed. If the doctor hadn’t been late, we wouldn’t have seen that happen. They told me later Joshua would have died by the next day.

The doctor told me we would be having the baby that night. He said it in the same tone you would use to order pizza. I guess he was trying to keep me calm. But I started to cry. I didn’t stop crying until we were in the operating room.

Daniel left for a minute to update everyone. My in-laws had already started the drive from Florida. Almost my entire family was there and I saw them a few minutes before they took me to the operating room.

The operating room was scary. Surgery didn’t scare me. But the idea that in about twenty minutes we would be parents was surreal and overwhelming. They told us at 6 that we would be having the baby. He was born at 7:08. That isn’t a lot of time to adjust.

Daniel was with me, dressed like a doctor and holding my hand. I was telling him knock-knock jokes and asking him to tell me stories. The nurses were talking to us, too. I think the doctor was telling a joke but I can’t remember for sure.

And then Joshua was there. They took him to go help him breathe and see how bad he was. He was in shock when he was born and his heart had almost stopped completely. When they brought him to me, all I could think was that he was the tiniest baby I had ever seen. I still couldn’t believe he was there. The doctor said I could give him a kiss, so I did. And then they took him upstairs.

The C-section was traumatic. I don’t want to be dramatic but the idea that they could just decide to take my baby from me while I could do absolutely nothing about it was terrifying. It was a nightmare. I hated it. It was like my mind thought that if I could just wait it all out, it would turn out to be a cruel joke. I would still be pregnant. My baby wouldn’t be in the NICU. But as hard as I wished for that to be true, it wasn’t. I was trapped. Our lives had done a complete 180 in fewer than 12 hours.

I felt so guilty. Everyone told me it wasn’t my fault. But it was. It was my pre-eclampsia that had caused the blood flow to reverse. Logically I know that isn’t true. But it felt true. It felt really true as the doctor explained to us that there was a 35% chance that Joshua would die. It felt even more true when she listed out all of the obstacles he had to overcome. It was hell.

You know the rest of the story. Joshua had some ups and downs but they saved him. And he’s doing well now.

So that, as they say, is that.

One Month

Tomorrow it will be Joshua’s one month birthday. Hold. The. Phone. How is that even possible? Have we really been doing this for a month?

Yes. Yes, we have. Some days it feels much longer. Some days it feels impossible that so much time has already gone by. Some days I still expect to wake up and find out this has all been a dream of the Wizard of Oz variety. And some days I feel a little lost on how to feel.

Today is one of those days. This week was a tough one – we dealt with the aspiration episode and then the infection and all sorts of fun stuff. Seriously, you should get one of these NICU babies. They’re a riot. But even with everything that’s happened, I’m not sad. I’m not scared. I was only upset for a few minutes when the doctor called to tell me that Josh had choked on his formula.

Normally this kind of event would mean I am sitting in my pajamas, scaring my mother with my sad, dark blog and eating cookie dough in the dark. But while I am in my pajamas (and they are CUTE), it’s really just because it’s nighttime and not because I’m all depressed. This blog isn’t scary (yet, muahahaaa), and I just remembered I have cookie dough in the fridge…hmmm…

What was I saying?

Oh, right. Feelings.

I’ve always been a bit of a Debbie Downer (wah, wah, wahhhhh). I can get a gnarly ‘tude and be a little bit defeatist in times like these. In general I am not a glass half full kind of gal, despite my super-duper cheerful appearance. But for the first time ever, being Debbie is helping me. I am able to manage my expectations by remembering how far we have to go. Any progress Josh makes is fantastic and I am thrilled to pieces over it. But I can’t go up and down and up and down and reverse and sideways and up, up, down, down, left, right, left, right, B, A, etc. It’s too much. So instead I’m staying as neutral as I can. I don’t know how else to do it. And so far it’s helping.

Wanna know what has inspired my newfound perspective? Oh, come on, you do.

It’s the X-Files.

Do not adjust your monitor. The X-Files is the key to NICU life.

There is an episode of X-Files called X Cops where the show COPS follows Mulder and Scully around as they try to solve the case of a monster in a small city. The monster feeds off fear and at the end (spoiler alert… from 2002), the sheriff’s deputy is trapped with the monster and starts to flip out. Mulder finds him and says the following inspirational words:

“You’re a sheriff’s deputy! And you’re on national television so cowboy up!!!”

Cowboy up. Is that not the most amazing way to say “put your big girl panties on and deal with it”? I think it’s magical. It sounds cool AND you immediately get the mental image of a cowboy (or girl, if you like) saddling up on his horse and riding into battle. Or wherever cowboys go.

There will be days where I will be extra sad. There will be days where I will be extra happy. But regardless of the day, I will cowboy up and deal with it. And since I also called myself Debbie Downer earlier, I hereby christen myself Cowboy Debbie.

All hail.

Baby Cowboy Debbie

Moving On Up!

Fine, we’re moving down the hall a little. But it’s still cool. They’re moving Josh to a new pod (like a bunch of whales. That made me laugh way too much just now.) where he’ll have his own room!! Finally, I can gossip and judge people in peace again. It’s really awkward to talk about the other moms when they’re sitting five feet away and glaring at you.

I’ll miss Pod E. It’s been good to us. We met Nurse Jennifer there. Memorieeeees. But I also like the idea of moving. It breaks up the time a little. Don’t worry; we’ll still see Jennifer sometimes.

Thank you for your encouragement yesterday. I was very grumpy. I didn’t have any Diet Coke. I know. A baby in the NICU is bad enough, but then to be Diet Coke-less… it’s almost too much to bear. I found some today, though.

I really do feel better today. I know tomorrow could be totally different. It comes with the territory. That’s a big adjustment but we’ll figure it out. Or lose our minds. I’m actually okay with either of those options. I wonder if they have Diet Coke in insane asylums.

All right, I know what you’re all really here for. Enjoy these pictures of my super-cute baby!