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Monday, October 13, 2014

Isaac and Porter were born via emergency c-section. They were born at 3:04 and 3:06 a.m.. When the doctor was trying to decide if the flutter we were seeing on the ultrasound screen was Isaac’s heartbeat or my own and discussing with the nurse how we should proceed, I asked if we could do a c-section just in case. To give him a shot. From the time I gave my verbal approval to perform the c-section and Isaac being born was less than ten minutes. I remember lying on the OR table with people rushing around me to get me prepped. I was shivering and waiting for Jacob, worried that he wouldn’t be able to find me. The last thing I remember before I went under was the nurse assuring me that he would be there.

After Isaac was born, he was taken into the resuscitation room where Jacob was waiting. The doctors worked on him for ten minutes, trying to get his heart to start again, before asking Jacob for approval to stop.

A few days ago I walked into that resuscitation room. I was taking a tour of the labor and delivery department as part of my job at the hospital. I didn’t think about that room until I was already inside of it. As I stood there, I wondered which bed my baby was laid on. I wondered how my sweet husband felt as he watched the doctors desperately try to save his son. I wondered how he felt as he waited, alone, for our parents to arrive at the hospital.

I don’t think about those moments very much. I try not to. I was asleep during that time, which I consider a blessing. I don’t know that I physically would have survived the aftermath of that day if I had been conscious while it was happening.

I have avoided that department at work. As I’ve thought about what kind of nurse I want to be, I’ve always crossed labor and delivery off.

But yesterday I happened to be in the hall when a baby was born. I heard the first cry. It was absolutely miraculous and I wondered why anyone would want to be anywhere else.

I’m starting to consider that working as a labor and delivery nurse might be where I want to end up. There would be many, many good moments. And some really, really awful. I’m not sure yet if the awful is something I can handle. I do know that strong nurses are needed in those moments. I still remember how kind and helpful the nurses were to me. It was a nurse that told me over and over that Isaac had passed away (the c-section drugs made it hard for me to retain information). It was a nurse that sat next to me and showed me my gorgeous, perfect, tiny son. It was a nurse that tenderly wrapped my Porter in a blanket so we could hold him also.

I sometimes wonder about the nurses we had that day. I’m not sure that they realize how big of a difference they made for us. I hope that no matter what kind of nurse I end up being, I can make a difference for someone.

Friday, October 10, 2014

EUA.

Owen’s still asleep (11:36 a.m.). Obviously the past few days wore him out as much as they did me... or more. Let’s be honest, as tough as it is for me to travel alone with him and do all of these appointments, he’s the one that actually goes under anesthesia. So if we’re handing out tiredness awards, Owen gets one first.

I thought I would update before he wakes up.

We flew to LA on a late-ish flight Wednesday night. There were a bazillion other kids on the flight (going to Disneyland). I decided to bring our pack n play this time since I wasn’t sure our room at the RMH was going to come through and I didn’t want to be stuck sharing a bed with the Owenantor again.

Owen is mobile, but doesn’t always go the direction I want him to go. And when he gets tired, he just sits down. Wherever we are. But when he’s carried, he doesn’t always want to be carried so he lunges himself out of my arms to get down. As quickly as possible.

That occupied my left arm.

I put the diaper bag on my back.

My right arm was occupied with the rolling suitcase and the pack n play, balanced on top. I really should have practiced that little combination before I took them to the airport, but I think it will suffice to say, it doesn’t work well.

Next time the pack n play stays home.

We met kind people along the way. People that helped with our bags, gave us money for dinner, and helped load the car. The Long Beach airport is just full of kind people. Employees and travelers alike. It’s always such a good experience flying in there. Even when I’m frazzled and exhausted.

Thursday, Owen had his EUA.

He played happily in the waiting room until it was time to go back. The other families there were all Retinoblastoma families and we had some good conversations. Owen went up to one lady and just sat in her lap (he’s not shy). and the other kids played really nicely with him.

His results were great, his tumor still looks very dead and the scarring is looking better than his doctor expected. Our next visit will be in 6 weeks.

Owen woke up from anesthesia more quickly than he normally does. The longer a person can sleep after being put under, the better they wake up feeling. I could definitely see the effect of waking up too early yesterday. Owen was very, very upset. He usually wakes up and drinks his juice right away and is calm (as long as you don’t take the juice away). Yesterday he cried for a good twenty minutes before I could get him to calm down long enough to drink the juice. I felt awful. Every time I tried to shift him so I could give him the juice box, he would think I was putting him down and freak out. I cannot tell you how much mommy guilt comes from your child being terrified that you’re going to put them down and send them into surgery again.

After I got him calmed down, he drank his juice and we were discharged. We were running a little late, so we headed for the airport as quickly as we could. We ended up returning the rental car on time and getting to our gate twenty minutes before boarding. Just enough time to grab some food before we got on. Once again I was so grateful for the Long Beach airport. It’s small enough that we could grab food and eat and still hear the announcements for our gate.

Owen didn’t sleep on the way home either (he usually sleeps during flights), but he was entertained with a combination of Sesame Street, snacks, cars, and his sticker book. The people on the flight were very kind and the lady sitting next to us even helped get our bag off the plane after we landed.

We finally made it home a little after nine last night. Owen went straight to bed.

I’m exhausted. My arms feel like someone tried to tear them off while I slept. I would like to take a few lazy days to recover from our trip, but I work the next three nights. I keep feeling like at some point we should get used to this traveling. Sometimes I think we are, but the past few days were very exhausting. I’m grateful for O’s results and pray that they keep going in that direction. Between now and the next LA trip he’ll have an MRI, hearing test, oncology visit, and possibly some therapy visits. He puts up with a lot.









Owen’s left eye. The big black spot is his central vision.

Tuesday, October 7, 2014

The weeks fly by incredibly fast. Owen has another EUA on Thursday. I finally feel like we’re in a good rhythm when we travel on our own. Last time we flew out Wednesday and flew home Thursday as soon as we left the hospital, it was nice to be only be gone for one night. Owen is also due for an MRI and hearing test, but those will happen here in a few weeks. If his hearing hasn’t been affected by chemo, we’ll probably have him evaluated for speech.

Yesterday Owen was playing in the kitchen and I had the realization that he’s a full blown toddler and not so much baby anymore. He’s pretty good at communicating what he wants (even though he’s not speaking) and he definitely has opinions. This morning I was washing dishes and heard him grumbling by the baby gate. I walked around the corner to see him holding up his bag of mega blocks, angry because he couldn’t unzip the package to get them out.

He loves to play outside and at the park. His favorite thing to do in the yard is play in the dirt or with the hose. At the park he loves climbing up and sliding down the slides and playing with the wood chips. He also gets excited when other kids are around.

He loves books. We haven’t been to the library in a few weeks because I’m worried about the virus going around, but he has lots of books to entertain him at home too.

He also loves playing with anything kitchen. He plays with his play food and supplies and when we let him play in the kitchen, he pulls out the pans and bowls and plays for as long as we’re in there. He also loves to help when we cook. We lift him up and let him stir, and yesterday I found him trying to add ingredients to a pot on the stove (yikes!) Jacob joked that he’s going to ask Santa for a zester.

Owen desperately needs a haircut. I haven’t done anything to it since he started chemo again and since he stopped I’ve hesitated because chemo left him with a huge bald spot on the back of his head. He’s starting to look mulletish though, so it’s time. I’m trying to be more self sufficient (read: spend less money), so I ordered hair clippers. Once I experiment enough on O, maybe I’ll be confident enough to do Jacobs. Maybe youtube will help me out. Hair cuts are expensive! I understand why my mom always did it herself.

I’m including a slew of pictures from the past 4 weeks. Starting with our EUA and then the stuff that’s more fun :) Owen sat all by himself for his vitals at his last appointment, then hopped down and got on the scale. He knows the routine and he’s big enough to follow it himself, that blew me away. Where did my baby go??

If you want to see pictures of this adorable little man on a daily basis, follow me on instagram. Kimberlypalmer :)























Monday, September 8, 2014

September is Childhood Cancer Awareness Month

It was pouring rain when I drove home from work last night. Usually I hate driving in the dark and the rain, but without other cars on the road it was easy to see where I was going and the reflections on the road were quite beautiful.

Owen and I go back to LA this week. I ran through all of the scary, possible scenarios in my head as I worked last night. I’m not sure that it’s a healthy habit, but I like to go into every appointment thinking about how I’ll handle different kinds of news.

This will be Owen’s sixteenth time going under general anesthesia.

September is Childhood Cancer Awareness month. Last year we were newly diagnosed and weren’t in a position to really think about raising awareness. This year I’ve been trying to spread awareness and thinking of ways to help. I think sometimes people don’t want to think about childhood cancer because it’s hard. It’s hard to read stories and statistics and learn that not every child survives. It’s hard to see a child go through treatments. It’s a hard subject, but turning away isn’t going to help it improve. We need more research and treatment options.

I’ve been looking at different organizations and I’ve decided to donate to CureSearch. They focus on research and clinical trials and I really believe that is where the money is needed most. Next week I’m going to start a fundraising campaign for them through my business as an Independent Scentsy Consultant. If you’re interested, check back here next week and I’ll post the link. If you want to donate to CureSearch directly follow this link and donate to the Salt Lake City 2014 CureSearch Walk. CureSearch supports Children’s Hospital Los Angeles, Huntsman Cancer Institute, and University of Utah (and a bunch of others, but those are our hospitals so they’re worth noting here).

This week when we’re in LA, I’m going to focus on spreading awareness with pictures via Instagram and Facebook. I don’t always share the tougher photos, but I think I need to be more transparent about our experiences.

My prayers are with every child fighting cancer and to the families of those that cancer has taken.

Monday, August 25, 2014

I haven’t written for a while... a long while. I think my last post dates right after our last round of chemo. The truth is that I haven’t written because I’ve had so many things on my mind and I’m not always sure how to voice them or if they need voicing at all.

I started my job at the hospital and I love it. love. love. love. Especially working in the ER (where I’ve been the past two nights). It’s exciting. I get to clean up some messy messes, which are my favorite. I get to be super busy and rushing all night, which makes the time rush by. Mostly I am just happy to be working. I work weekend nights, so I don’t feel like I miss out on much family time (most of the time that I’m at work, J&O are asleep). J gets some great one on one time with Owe-bug while I’m gone and I’m already seeing it make a difference in how big of a mama’s boy O is. I want him to realize that both of his parents adore and take care of him and I think having Daddy as the solo parent three nights a week is really helping. Mostly I just feel good. I didn’t realize how much I needed to have something away from home. I feel better about myself, I feel more accomplished, and overall I just feel happier.

I struggle this time of year, every year it seems, since the twins died. It seems like once August hits, it’s a whirlwind of I&P anniversaries. I’m already struggling with the birthday. November is months away but it feels like it’s looming over me already. I might just crawl under my covers that day and pretend the world doesn’t exist.

Working at the hospital has forced me to acknowledge some of my experiences and deal with how I feel about certain things and areas. The first day I realized that the EVS office is around the corner from the morgue, when I turned the corner and saw it- that room where they took my babies after we said goodbye- I wanted to cry. I wanted to turn around and go back to my car. But I didn’t. I stuck it out and now when I turn the corner, it doesn’t even bother me. I didn’t realize I would have such strong feelings about specific areas of the hospital. I had the same reaction when we went to the NICU. I&P never made it to the NICU, so I didn’t think I’d associate it with them, but seeing those itty bitty babies just brought it all back to me. The rush of that morning, the NICU team being called, my premies that never made it that far. Every time I hear something or find another place that gives me flashbacks, I feel like I’m climbing the mountain. I’m acknowledging my feelings and I’m working through them. I’m trying very, very hard to heal.

Owen’s last EUA went very well. There was no active tumor, so we will stop chemo for now. In three weeks, he’ll have another EUA and we’ll see what’s going on. Like always, he handled it like a champ. No melt downs, 22+ hours in the car, and two nights sleeping on a bed with me (I forgot the pack n play). He’s awesome.

Overall, we’ve all been good. We’ve been busy, but I think most of it is getting into a routine. The past two weeks weren’t our “normal” schedule, but now that we’re on track we should be able to get into the groove of things.

Friday, August 8, 2014

Just got internet after a week without. I can’t believe how much I rely on the internet! I was so stuck... I actually had to go to a real store to buy the things on my shopping list (the horror!)

In that past week (and a half) this is what we’ve been up to-

1. Owen completed his second round of chemo.
2. We went camping with my family in Ferron, Utah (where my grandma grew up).
3. We moved.
4. I got a job.
5. I signed up to be a Scentsy Independent Consultant.

Owen has struggled a lot this week from the affects of chemo. Lots of nausea meds, snuggles, and pain medication as needed. He’s been waking up in the night more than he did as a newborn. The last few days we’ve seen huge improvement, so we’re hoping we’re on the downhill of the nasty side effects. We return to LA the week after next to see how his tumor is responding. Chemotherapy itself went okay. The first day I was alone and it was very, very difficult. I had called ahead and asked if I could take Owen out of clinic hooked up to the IV, but I had failed to ask about the chemo drugs specifically. I didn’t find out until we were in clinic, that he couldn’t leave with the chemo drugs. Which makes sense, but it grounded us for the day. Me with too little caffeine and him in a room that didn’t keep him entertained for very long. Fortunately there are lots of fun toys in clinic and we had the iPad, but it was a tough day. The next day my mom was able to come with us (hallelujah) but they struggled with Owen’s IVs. He ended up having three different IVs put in before the day was over. We were all very tired by the time we got home.

Camping was a much needed get-away for us. We went down to Ferron, where my grandma grew up and had a great time hanging out as a family. We went hunting for round rocks, swam at the lake, and saw the pageant.

I’m very excited about my new job and about being a consultant for Scentsy. It was hard this week to complete all of the pre-employment stuff for my job and get ready for my Scentsy launch party sans internet, but I’m back up and running now and ready to get going with both endeavors. My job is part-time and nights, so I’ll still be able to take care of Owen and be with him for his doctor’s appointments and treatments. I am excited to do something outside of the house that will help our family financially. I’m super excited to have TWO new jobs. Scentsy is something I’ve loved for a long time, I’m thrilled to start sharing that with other people.

We go back to LA the week after next. Until then Owen has ZERO appointments :) Since his numbers have always done so well, he doesn’t have to have any blood draws unless we start another round of chemo after LA. Being able to stay home during his bad days has been really nice. I’ve spent a lot of time just holding him. It’s made un-packing go really slowly, but chemo pain and nausea wins over un-packing responsibilities. Plus there are a lot worse places I could be than cuddling my sweet O.















Friday, July 25, 2014

I’m sorry it’s been so long since I’ve updated. We went for our monthly exam in LA and our doctor found that Owen’s tumor is responding very well to chemo (YAY!). So well, in fact, that Owen might be done with chemo after this next cycle. We won’t know for sure until we return to LA in August, but it’s a possibility.

Owen is having another round of chemotherapy this week (Tuesday and Wednesday). I’ve been fortunate that up to this point, I’ve always had someone to go with me on chemo day(s). That won’t be the case this week, so I’d appreciate some extra juju that everything goes smoothly :)

I’ve been feeling really good the past few weeks. I wrote about it briefly, but I’ve had some times in the past month where I’ve been really down about the twins. It’s normal for grief to hit me harder at some times than others, but it’s exhausting when it does. I’ve been packing (we’re moving soon) and as I’ve gone through things, I’ve had some break-down moments when I unexpectedly found a card given to us after their death, scrapbooks I compiled, etc. I think allowing myself to break down has helped me overall though. After crying, I feel more refreshed and able to move on with my day unburdened. I’m going to work on allowing myself to feel what I’m feeling in the moment and not feeling guilty about it.

I’m also working on being less stressed in general. I have two mottos right now, “I have bigger things to worry about.” and “it is what it is.” I’m trying to have perspective as I go about my day. I’m also trying to be more positive about myself. I find that some days I think about myself as a “bad mother” or “bad wife” because I didn’t accomplish all I wanted to accomplish, because I didn’t wake up on time to make a hot breakfast, because Owen watched too much Sesame Street, etc. But I think giving myself those messages does more harm than good. The important thing is that I’m trying. Some extra Sesame Street on a day that I’m fried and trying to get housework done isn’t going to hurt Owen. Likewise, Jacob having toast or a bagel for breakfast one morning isn’t going to make him have a bad day. It’s all about balance and doing whatever we need to do to get us all to the end of the day happy, loved, and well cared for.

I’ve noticed as I feed myself these positive messages, I’m happier. I’m becoming more and more content with my life. I’m enjoying the time with my family more. And I’m worrying less about things that really don’t matter that much.