Friday, January 31, 2014

New normal

Somehow the days keep passing and I find it's the end of January!  We've had some good days recently and with Frederick being 6 weeks old, I'm feeling better and better. Nursing doesn't hurt anymore, I'm getting sleep at night in 3 hour chunks, I feel healed from giving birth and am even starting to think about exercising! (There's a 10k, 5k or 1 mile race in a month I'm thinking of entering)

Chris has radiation every weekday morning in Columbus (25min away). He gets up early for that and takes Alec to school on his way then goes into work. He teaches a class Tuesdays/Thursday, goes to meetings and has gotten more into his research. The boys started soccer this week...Alec's first experience with a formal team and coach.  I'm back in the habit of taking Charlie and Gwen to  library story time on Thursdays and to open gymnastics on Fridays...with Frederick in tow.  Chris just got a calling in church - branch executive secretary.   I finally cleaned my room and unpacked the remaining random bags from our numerous hospital stays, and put away the last Christmas presents. Frederick has been smiling a lot recently...I think at us. We have normal problems like our little car being the shop for a week and kids sick with a sore throat / cold. Believe it or not, these typical problems make me happy...they are familiar. 

 I think we've hit a good 'new normal.' Chris and I are still completely out of shape/tire easily, we only use paper products, and cook mainly with freezer meals but we're moving on with life. And that feels so good. 

Thursday, January 23, 2014


I keep thinking I should update the blog and record the past couple of weeks but nothing disastrous has happened so it seems like I have nothing specific to say. We're just adjusting and trying to find a groove. 
We're beginning to realize that it's going to be a long slow road back to normalcy. I wonder if life ever will ever be the same. Actually that's a silly thought. Of course life is never going to be the same, we now have 4 children and some health baggage.

I guess I just wonder if our personalities or bodies will be permanently changed. Who knows, it's pointless to dwell on it, all we can do is hope that we'll make any long lasting changes good ones. 
Dixie extended her stay for another week to help us settle in at home from our last Nashville trip. She did laundry, kept up on dishes and made a bunch of freezer meals! My mom flew in on Saturday night for her traditional 'come help with the new baby visit' and Dixie flew out Sunday. We had 2 grandmas for a morning! So great. My mom helped me get the house in order, put away Christmas decorations, kept us well fed, entertained, and feeling good with some new clothes and a haircut for me! We have the best moms and are awed by their kindness, generosity and personal sacrifice to help us so much. 
The kids are glad to be home and into some kind of daily routine. They are glad to have their dad back home and a new baby brother. I do wish their gladness manifested itself a bit more calmly and cooperatively. It's like they've been feeling the stress of everything and in the wake of these final moments they can now let a good hard cry at the end of a long day. We're paying the price now for all the things we had to 'let go of' parenting-wise and deal with habits that have formed during the past couple of months.  Handling their angry behavior has probably been the hardest thing to manage out of everything that's happened - at least it feels that way for me right now.  But I guess as a result we have more appreciation for any small moment of 'normal' sweetness. Frederick keeps us in ready supply of those. 
To be completely honest and a bit personal, the added stress and burdens have also affected the relationship between Chris and I... from my perspective. I feel loved and cherished most when Chris does things for me and in little physical expressions of love, especially when I'm pregnant. So with Chris feeling so awful for so long has left me feeling a bit alone. His coping strategies are: sleep, pretend to sleep and watch TV.  It was easier to not be so disappointed when it was just us in Nashville, when taking care of him was all I had to do. Being back with the kids, having a new baby, and the basic demands of being home just magnified all the things he couldn't do, and all the things I had to do or be in charge of alone. I knew he'd basically been through Hell, so I tried to give him lots of slack but I still felt a distance between us.  I hate feeling that way. It makes the whole world look gloomy.  Because of all this, both our moms really wanted us to go on a date. Thanks to Dixie's encouragement, Jess' Christmas gift, and my mom's preparation and babysitting it happened: our first date here in Starkville. 
I lost my cool with some crazy behavior from one of the kids the evening we were supposed to go out and we almost canceled. It was late, I was in a bad mood and we were both tired but I couldn't let my mom's efforts go to waste and I had been looking forward to it all day so we mostly put the kids to bed and went out to eat. I'm so glad we did. The food was great and Chris and I were finally able to connect, talk about us, and refocus our parenting plan. I feel like I better understand Chris.  It makes me want to seek for understanding first whenever I find myself wishing to be understood.  Since our date, Chris has been making good efforts to help me and express appreciation which makes a big difference. It feels great to have things better between us. Life is good when we are good, no matter the circumstances. 
On a much lighter note, Frederick is over  1 month old! Holy cow that was fast. Our first impulse is to tell people we have a 3 week old. :) 
He is such a joy to hold and cuddle and kiss and love on.  Having him sleep on my chest is the perfect medicine at the end of a frustrating day. His needs are so easy to diagnose  and take care of. Hungry? Feed him. Tired? Wrap and hold him. Cold? Add another blanket. Wet? Change him. His milk drunk state is my favorite. It feels so good to completely satisfy I'm doing something right.

Tuesday, January 7, 2014


After 11 days in two hospitals, Chris got the 'ok' to come home. For the last little bit in Nashville he was down to just 1 (not too uncomfortable) fever a day, around 8:00pm. 

Since all the tests and cultures and scans were coming back negative the doctors wondered if the antibiotics were causing these last high temperatures. So Saturday they took him off the harshest antibiotic (vancomycin) and waited for 8:00 pm to come around.  No fever! (Highest temp was still 99 something but Chris didn't feel bad like he had around Christmas time with that kind of temperature) 

By Sunday morning he still hadn't ever gotten above the fever deadline of 100.4! Dixie and I took the kids to a nearby LDS chapel for church and ended up attending the Young Single Adult branch. Ha. Those are the quietest meetings on the face of the planet and bringing my 4 loud kids was sort of a nightmare. But after hearing the opening remarks I knew it was good for us to have come. The message given was just what I needed to hear because I was dangling at the end of my rope. Keeping the kids from destroying the hotel room and disturbing other guests, staying calm during Gwen's many, ferocious tantrums, driving back and forth from the hotel room to the hospital, finding parking, lugging things and kids back and forth, in between feeding a 2 week old baby every 2-3 hours was exhausting me...physically and  mentally. Things, for me, just seemed to be getting harder.  I thought being an 8-month pregnant care giver to a stem cell transplant patient was hard. Then I needed to take care of a newborn and Chris in the hospital and the kids at home being 1 and a half weeks post partum...and pass a kidney stone in the middle of all that...that was hard. But now I needed to do all that (well, except pass another Kidney stone! whew! Thank goodness for that) AND not have any of the conveniences of home or a flexible hospital visitation policy since Chris' new hospital wing didn't allow kids to ever visit (not even a 2 week old). That is hard. 

The message in the opening remarks at church was a football analogy of life.  In a game where the defense was hitting really hard, the receiver might be tempted to take his eyes off the ball to prepare for getting pummeled. But catch or no catch...the hits were coming. "You're going to get hit either way, you might as well catch the ball." Life can get pretty rough at times. We're going to be hit with things that are hard, things we think we can't handle. And they're going to happen to us no matter what. We may as well 'catch the ball' and keep our eye on the prize by enduring it well, relying on our Savior's Atonement for staying true and living the Gospel of Christ in our hard moments. 

The much older branch presidency member giving the opening remarks continued saying that he knew we all had hard moments coming up in our life and he also knew that getting through them would be challenging but also strengthening. He encouraged us to hang on and rely on Christ to get through them. God was mindful of us and doesn't give us more than we can handle. 

I had tears streaming down my face at this point.  I know the guy speaking had the concerns and worries of a room full of young single adults in mind when he said those words but they touched the heart of a weary mother of 4, wife of a good man battling cancer across 2.5 years.  I know The Lord was mindful of me and was lifting me up, keeping my head above the water, giving me the strength to make it through each day, just barely. He numbed my emotions so I didn't explode with impatience during the tough parenting moments, or sob uncontrollably in front of doctors when given disappointing news. He sent angels to back me up at the right moments during all of this...I'm mostly talking about my mom and mother in law. Who each flew in to help at JUST the right moment: my mom for the week when Frederick ended up being born, and Dixie coming the day Chris ended up starting his stay in the hospital. He blessed me with a generous and thoughtful family who provided the hotel accommodations for us.  Our (upgraded for free) suite had two bedrooms and a living space/kitchen and the hotel had an indoor pool and free breakfast. 

I'm so grateful for that gem of truth in those opening remarks and for my kids being quiet and still for however long it took me to hear the guy say those words. The rest of the meeting was tricky. Gwen was throwing more tantrums and I had to take her out a couple of times. On the way to the hospital right after sacrament meeting I prayed and wondered how much more I could take. 

(Charlie hijacked my phone and took this picture during one my trips out to the hall with Gwen) 

Even though Chris' hospital wing doesn't allow children there is a very small room just outside of it that Chris could meet us in for short buts of time. We were just getting settled in that room when Chris told me the doctors said we could go home the next day if Chris could remain fever free for another night. It was music to my ears and I broke down and cried again. Maybe only 1 more day? Yes! I could make it one more day. 

Many prayers and much fasting were offered up in our behalf that day.  I fed Frederick at the hotel around 7:00 put the kids to bed, left them all in Dixie's care and headed off to visit Chris for a bit before needing to be back at the hotel to feed Frederick again. No fever! I txted Chris during the night when I was up with Frederick. No fever!  Hurray! We could go home.

The doctors never could pinpoint exactly what was causing the fevers. It may have been a virus or a UTI or both causing the initial, very uncomfortable fevers during the first week or so and then as his body fought those off, perhaps the antibiotic medicine produced the later fevers that didn't seem to bother Chris much. 

Whatever. It's over. We're home, together. And Dixie extended her stay with us to help us for the rest of the week! Then my mom comes back again since she already had airplane tickets purchased for when we thought Frederick would be born. It will actually be really helpful since Chris is starting radiation therapy next week. 

Random picture: 
It was so cold this week. I loved seeing the icicles on Nashville's rock faces ... One of my favorite components of that city's charm and beauty. 

Wednesday, January 1, 2014

Still not done

"For whatever reason" (shout out to my friend Joni who I think of everytime of hear that phrase) ... we are just not done with this. 

Chris is still in the hospital and the doctors here in Starkville are thinking they don't have anything else they can do for him since nothing is stopping the fevers from coming back every 4-6 hours. So they are sending Chris up to Vanderbilt. They have been in contact with the doctors there at Vanderbilt the whole time and have been following their recommendations but I guess it'll just be better to cut out the middle man and get Chris under the direct care of the Vanderbilt doctors.  They have to send Chris in an ambulance because they need to be able to treat him in case something happens on the 5 hour drive to Nashville. And no one else can ride in the ambulance with him. (Perfect timing for insurance to have this happen on the first day of the new year when our out of pocket maximum starts over ...)

Physically, besides feeling feverish a couple of times every day, Chris is doing alright. He still doesn't have a good appetite and even threw up yesterday but inbetween fevers he would be smiling at us and able to get out of bed to use the restroom etc. 

Emotionally, it's just getting worse the longer this goes on. He's sad to miss out on family life at home...Alec lost his other front tooth... He doesn't get to enjoy his mom's cooking or sleep with me at night and barely gets to cuddle his newborn son.  We didn't expect the longest hospital stay to take place after day 40! 

The plan is to take the whole family up to Nashville. I need to be with Chris and also am breastfeeding Frederick and our other children are in need of at least access to one of their parents.

So. Ok. Here we go. Whatever it takes. We have faith in a complete recovery and for many years of normal life ahead of us. We just don't know the timing and have to trust in God to continue to bless us with assistance to make it through one day at a time.