March 31

Karen had her feeding tube removed today.  It wasn't exactly expected this soon but Karen is in a much better mood now that it's gone.  Visiting Becca today was much easier without it and the bag that usually goes with it.  We went for two visits, once in the afternoon around lunch when Karen still had the tube (though no feeding bag at that time) and again in the evening when she no longer had the tube.

During both visits Karen was able to walk the entire way without using a wheelchair.  It seems like such a small thing to walk a hundred yards but at this point it feels more like a brisk, mile walk to Karen rather than a short walk from the car.

(A baby Becca burrito)

The evening nurse said Becca is a little over 5lbs 2oz.  She still has some trouble with her blood oxygen levels but nothing too unusual at this point.  She is improving there and did take about half a bottle today.

Braden

March 30

Karen wasn't feeling up to church today.  I went for a bit and then went back to stay with her.  She was running a bit of a fever which has me a little worried.  Yesterday Karen didn't take her pain medication as often as usual so that is probably part of the problem.  The other part is that people with cancer usually run slight fevers.

Karen did manage to get enough energy to visit Becca in the evening.  We were both able to hold her for extended periods.  Hopefully we will be able to get over to visit her more often in the coming weeks.  With Karen feeling better we will try to do two visits per day.

Braden

March 29

Karen and I took it easy today.  I cleaned up around the apartment while Karen read and took a nap.  In the afternoon we went shopping for some basketball shoes for me but didn't find anything decent.  Besides, after about 30 minutes Karen was ready for a nap.  We stopped by PF Changs for some gluten free egg drop soup.  Karen stayed in the car while I went inside, where I ran into a coworker of mine.  It's nice to run into people you know when you aren't really near home.

We got some good news about Becca's feedings.  She took two of her feeding today entirely from bottles over 2 hours.  Of course she was so tired that she slept through her next feeding both times.  Who knew eating could be such hard work.

Braden

March 28

I took James in for his 1 year checkup where he was given 5 shots for vaccinations.  The little guy was screaming when the nurse had me hold him down.  Once he got the first shot the crying started.  I really wish there was a less painful way to do shots.  James did very well afterward and was back to his usual self in a few minutes.  He was crawling around looking for toys and trying to get out the door.  In fact, he actually did get out the door and turned on the overdrive before I could snag him.

For our date night (with Karen's parents) we went to a musical called "Single Wide" on BYU campus.  It was very well done and gave Karen a change of scenery for a couple of hours.  After the play we went to visit Becca.  We didn't stay as long as normal since Karen was a little more fatigued because of the walk to and from the theater.  A few weeks ago she wouldn't have been able to make the walk in either direction.

From some angles it looks like Becca is actually getting some fat on her and from others you realize how little she really has.

Braden

March 27

James stayed overnight and Karen got to spend the day with him.  Her parents were there to help out as well.  He played quite a bit with his new walker toy and really wanted to look/play with a book that was a gift from some friends.

We were able to help Becca with her bath and then hold her for a bit.  She is over 5 lbs now.  The doctor let us know there is a possibility she will be sent home on oxygen.  We would just need to keep a closer eye on her.  It is hard to believe she is 50% heavier now than when she was born.  We're not sure how much longer she will be in the hospital and the goal is still her original due date of April 22.  We are hopeful it will be sooner.

Braden

March 26

James is now 1 year old...  We had a nice little birthday party with me, Karen, Karen's parents along with Karen's sister, Jeanette, and her family.

Afterwards we went to visit Becca and asked the nurse a few questions about what to watch for when Becca is released from the hospital.  After about 20 minutes we decided we needed to split the information up over a few days and headed back to the apartment.

When we got back Karen's mom and already cleaned up from the party which made getting ready for bed very simple.

Braden

March 25

It was a long day with a visit to the doctor's office for Karen's post delivery checkup.  Afterward Karen was able to take a nice nap.  We decided to try eating out at In-N-Out Burger.  We picked up the food and then ate in the NICU waiting room before visiting Becca.

The nurse let us know that Becca was fed 15 milliliters from the bottle earlier in the day.  That doesn't sound like much unless you know she only eats about 45 milliliters every 3 hours.  She does get tired quickly when eating from a bottle so it will most likely be a few weeks before she is taking all or even a majority of her meals via a bottle.

Braden

March 24

Karen's port was placed without much trouble.  While she was having it put in, she had me grab a few things we forgot at the apartment.  Right after that we met with the doctor who said they will be using one more drug for the next chemo session in two weeks.  They might have been able to include it this week if the port had been in place earlier.  One of the drug's side effects is that the body takes longer to heal from cuts so they decided not to inflict additional discomfort on her this time around.

She finished up in the chemo chair around 2:00 after which we went over to visit Becca for a few minutes.  We didn't hold her but just sat by her crib and watched her sleep.  It amazes me to see her doing so well.  After we left Karen managed to fall asleep before we got back to the apartment.

I went back to work for a few hours and when I got back Karen didn't even flinch from sleeping when I came through the door.  The chemo treatments really take the energy out of her.  The good thing is she says this time around she didn't feel quite as tired as before.  That is not how it normally works but with her being so malnourished prior to starting treatments she has almost no where to go but up.

Karen's brother Phil sent a few pictures of James playing around.  Based on the pictures he is having a good time.  I am getting more than a little impatient to see him again on Wednesday.  We are planning to have a small birthday party for him and are happy to have him there on his birthday.

Karen somehow managed to summon the energy to visit Becca in the evening.  For the first time Becca had a dirty diaper when I changed her.  I can now say I have changed more of Becca's dirty diapers than Karen.  That won't last long so I'll enjoy my lead while I can.  I have nowhere to go but down from here.

Braden

March 23

Karen was able to get plenty of rest this morning before church.  She made it almost 2 hours and still had energy.  After church we visited a little with George and Leslie for a while.  A little later we went on a short trip to Santaquin to visit Karen's sister Jeanette and then over to the house of a co-worker of mine.  It made for a busy afternoon and Karen slept for a good portion of the drive back to Provo.

We got a visit from the bishop (and his wife) of the ward where we are staying which was very nice.  I think getting out and then having the unexpected visit made Karen feel normal even if it was only for a few hours.

In the late evening we went to visit Becca who is doing great.  You can actually see she has something more than just skin on her legs now.  She measures 16.5 inches and weighs a little over 4.75 pounds.

James is staying with Karen's brother Phil.  He went for a walk in the stroller yesterday and has been having fun playing with his cousin.  We will be able to see him again this week for his birthday.  We'll see how that goes for Karen after her chemo treatment this week.  The doctor had mentioned the possibility of adding a new drug this week based on some genetic test results from the tumor.  That is on top of having a port put in early Monday morning.  Hopefully all of that isn't too much for her.

Braden

March 22

Karen and I were able to spend most of the day with James.  In the early evening Karen's brother, Phil, and his wife picked him up.  They will be taking care of James until Wednesday at which point we will have him back for a few days before my sister gets him back again.  There are times when I don't want him to visit because of how much it hurts when I have to say good-bye.  However, he needs to know his parents and be comfortable with them.  As hard as this is on me and Karen, in the long run we hope it will all be for the best for James.

Shortly after James left we went to visit Becca for a while.  She is now over 4.5 pounds and improving after her set back earlier in the week.  One of the nurses described it as the NICU rollercoaster which is an apt description.  It may be a few more days before we can go back to feeding her from a bottle but as long as she is improving again we are happy.  We are confident in the very capable staff there and know they are doing everything they can for her.

Braden

March 21

Becca is off of the continuous feeds and to feedings done over 2 hours.  She does better when sleeping on her stomach according to the nurses.  With James visiting it took us a little longer than usual to get to the hospital for our Becca time.  My mom kept an eye on him (not hard since he was sleeping) while we went to see Becca.

There is a big difference in sizes between James and Becca.   Going from holding James who wiggles and moves constantly to holding Becca who sleeps most of the time really highlights the differences between a newborn and a one year old (next week).  James is crawling everywhere and into everything he can see.  He is very close to walking on his own though I don't think he has much interest since he can move on all fours when he puts his mind to it.

I think I woke Karen up on my way out the door for basketball in the morning.  It's nice to get out and be physically active though I did come away with a big blister on one foot along with a stubbed and bloody toe on the other.

Karen is keeping her spirits up and doing well.  Her physical therapist stopped by and gave her some arm exercises which she can't do until her 'pic' line is removed on Monday.  We are looking forward to that with a little trepidation though.  I don't know how she will handle recovering from the sedation and getting a chemo treatment in the same day.

Braden

March 20

Becca hasn't had any more spit up episodes today.  The doctor doesn't think the scanner results showed anything unusual but will have them reviewed them to be sure.  Karen wasn't able to visit due to some problems with the feeding tube pump/bags.  She got to stay behind and wait for the replacement supplies to be delivered about 5 minutes before I got back from the hospital.

James will be with us for most of the weekend.  It will be good for Karen and me to spend some time with him.  I feel like we are missing so much with him right now so every minute we get with him is great.  We really appreciate the willingness of ward members to play taxi for him.

I think Karen is doing better everyday.  She is eating more at meals, up and around quite a bit, walking better and laughing more often.  I just hope the chemo treatment next week doesn't knock her down further than it did before.

Braden

March 19

Karen was reluctant to renegotiate our weight loss deal.  She told me she's just trying to catch up from the last few years.  Put that way it was hard for me to respond.  Karen is much more alert and joking more now which, in my opinion, is a very good sign.  She looks a lot healthier with more color in cheeks.

Becca spit up more and the nurses noticed her pushing her tongue in and out of her mouth rhythmically which is a possible sign of seizures.  The doctor said it's unlikely and believe it's caused by acid reflux so they put her acid reflux medication and a continuous feed as opposed to every 3 hours.  To be safe they put her on a brain scanner of sorts that monitors electrical activity in the brain.  She seemed to be doing better and was calmer despite being in a much busier area.

Braden

March 18

Karen is still tired which has me a little worried for her next chemo treatment on Monday.  Before the chemo starts on Monday they will be putting a 'port' in.  It is a procedure that doesn't take long but will hopefully make things a little easier for her.  The biggest part is she will have her 'pic' (no sure of spelling) line removed.  No more semi-permanent I.V. in her arm that hurts when it gets bumped.  It also means she will only have the feeding tube for James to possibly (usually) grab when Karen holds him.

Becca is still doing well although she was a little upset for some reason last night.  We're not sure why and neither was the nurse but she was a little more fussy than normal.  Her lungs are definitely working a lot better now than when she was born.  We did get to feed her a bit from the bottle, though Karen didn't get to hold her much because the 'pic' line was bothering her not to mention being tired.

Becca is still putting on a weight and Karen is too.  For the last few years Karen and I have had an agreement where I would have to lose 5 pounds (2 pounds if she was pregnant) for every pound she gained.  Since Karen is already up to 119 from 110 I think a little renegotiation is in order.  I'm already 40 pounds behind and she gets to 'cheat' with the feeding tube and eating some food normally.  I guess when it comes to this type of stuff, "If you aren't cheating you're not trying hard enough."

Braden

March 17

It is always nice to see how willing people are to help Karen, me, James and Rebecca.  We have had a lot of people from the ward in Mt. Pleasant make the hour trip to help out.  There have also been people from the local ward here that have helped out a total stranger.  It is a relief to know that while I am at work someone is with Karen.  While I am only a few minutes away by car that is still a long drive if something happened.

Karen and I went to a premature baby class where they went over development and how to hold and calm them down.  What it all boils down to is no light touches, be firm but soft, keep the noise level down to avoid overload and stress, no bright lights and move slowly when holding them.  They did encourage us to talk, sing or hum softly to Becca.  They also encouraged continued skin to skin contact for development and calming.  We still have a lot to learn.

After the class we spent some time with Becca and fed her from a bottle again.  She has been spitting up a little so we let the nurses know that James had done the same thing on Similac and Enfamil formulas but not on the Gerber (not soy based).  I thought it would take a while for them to try out the other formula but to my surprise they let us try it while we were there.  It's too early to tell but we hope it helps.

On the way out I realized I hadn't take any pictures and hurried to snap this.

I was going through my phone the other day and found this picture of Karen and James.

Braden

March 16

A slow Sunday for both me and Karen.  We were able to make it to church for a bit.  Karen started getting tired after about an hour so we left early and went 'home'.  I tried my hand at cooking something Karen's family calls Kathy's stir fry.  It turned out okay but a little under seasoned.

We went to visit Becca a little early today.  After she woke up I was able to feed her from the bottle.  She ate 13 milliliters from the bottle which is great considering she only ate about 4 milliliters a few days ago.  She was very tired afterwards though and went back to sleep.

Braden

March 15

My parents were able to visit today.  My mom helped with some laundry and meal planning for next week after which we went shopping for what we needed for those meals.

After my parents left we went to visit Becca.  They moved her into a crib while we were there.  She is still doing well and has been weaned to an all formula diet now.

Karen is stil regaining her strength.  The swelling/water in her legs and feet is gone and she is able to walk a lot further and more easily than before.  She commented the other day that she was jealous of how easy it was for me to just get up and walk around.  That really made me think about other things I take for granted.  It also made me grateful for my own health and that I am able to provide and care for her right now.

Braden

March 14

So Becca weighed in at 1850 grams (just barely over 4 lbs).  That means they will be moving her out of the isolette and into a crib in the next day or two.  They also fed her a little with a bottle.  She ate a bit and did quite well.  She then finished off by eating 36 milliliters or about 1 ounce via the feeding tube.

Karen did the feeding and then let me hold Becca for a while.  Karen laid back in her chair and took a little nap while I enjoyed holding our little girl.  We got some tiny hand molds of Becca, my thumb is as big around as her wrist.

Braden

Chemo has made me really tired this week and the doctor trying to change the feeding tube amounts didn't help any. However, tonight I got to feed Becca her very first bottle. She did awesome and ate 4 milliliters before she got too tired. I let Braden hold her after that and I leaned back, closed my eyes, and let his humming put us both to sleep.

Karen

March 13

Katrina dropped James off for a few hours today and Karen was able to spend a lot of time with him which I think was great for her.  I was able to spend a little time with him as well at lunch.  It's always nice to see his smiling face.

Karen said he tried to throw a bit of a tantrum today.  She just looked at him and said, "You think that's going to work with me?"  After that he stopped and sat up.  Not sure if he realized mommy couldn't pick him up or if she wasn't going to put up with it.  Either way he is a smart kid.  Karen and I are in for some interesting times when he gets older.

Karen's parents had to go home today though her mom made dinner for us before she left.  Karen is able to eat a lot more than she could last week.  After dinner we headed over to visit Becca.  Karen was so tired she couldn't hold Becca.  Because she was so tired we only stayed for about a half hour and then left.  Karen practically went straight to bed afterwards.  In a lot of ways she is stronger than a few weeks ago but she still has a long way to go.

March 12

The doctor wanted Karen to try only using the feeding tube at night.  To do that she needed to wake up every two hours and increase the feed rate slightly and then see how she reacted.  Unfortunately in the wee hours of the morning she started having stomach pains.  We stopped the feed tube and waited to see if the pain subsided which it did.  It had me a little worried because the doctors tell us to watch out for sudden pains that don't go away since it is a sign of a bowel obstruction or worse.  Needless to say it made for an interesting night/morning.

Karen returned her chemo pump and thankfully didn't need the immune booster shot.  That one shot would have cost $4000 and according to the nurses there is a place that charges four times that.  When I asked why it was so much they said it replaced 10 shots over 10 days.

Becca is still doing good and is now on a mix of formula and human milk.  Both of us were able to hold her for a little bit.  She did slow her breathing down a lot while we were visiting.  Caffeine is used to help early babies remember to breath.

March 11

Had some ward members stop by to be with Karen while I was at work.  They were nice enough to stay until I got back from work.  It was a slow day until I was supposed to leave then it got busy and kept me late.  It is nice to know there are people willing to help us out so much

When I got home Karen insisted that I go for a run.  There is a little trail that starts near where we are staying.  It goes down to another cul de sac and ends but from there I can go down to University Ave and loop back to the apartment.  I did two laps (checked in on Karen after the first lap) and felt much better afterwards.

Her parents arrived tonight in time for all of us to visit with Becca.  We had an option of holding her or helping with her bath.  We opted for the bath, though we didn't really help.  They wrapped her in a fleece blanket and then put her in the water.  She was amazingly calm until she was taken out of the water.  As you can see from the pictures she closed her eyes and basically slept through her bath.

March 10

Karen had her second chemo treatment today (first time at the out patient facility).  It basically took all day to get everything settled.  They weighed her for the appointment and the scale showed 110 lbs which is way down from the 140 lbs a few weeks ago before she had Becca.  It's a little scary to realize she was 135 lbs before she got pregnant.

We had a lot of questions for the doctor.  Karen sent me on a food run around noon to snag some Cheetos (they are gluten free) and some lunch for me.  The treatment really wiped Karen out, partially because of the benadryl she got to prevent some reactions and partially because of the actual drugs.  As I type this she is getting a continuous dose over 46 hours to complete the treatment.  They hooked Karen up to a nice little pump and sent her home.  It is supposed to be foolproof but we'll see how that works out.  After all the saying goes, "Nothing is foolproof to the talented fool."

Since Karen was so tired she didn't feel up to a visit with Rebecca tonight so I had to go it alone.  I really hope that isn't a preview of things to come, how I hope that isn't so...  It breaks my heart to even think about Karen not being able to see her little ones grow up, to hear their first words, to see their first days of school, hear them say, "I love you mom", or any other of thousands of those precious, once in a life time experiences.

Braden

March 9

Had a slow day with just me and Karen.  Probably a good thing due to the time change.  We went to visit Becca a little earlier than normal and stayed a lot longer than usual.  She is now 3lbs 11oz. and 16 1/4 inches.  She is doing great.

Karen has her second chemo treatment tomorrow, her first out patient appointment.  We are hoping it goes well and already have a lot of questions for the doctor and staff.

Braden

March 8

James was able to visit today.  A friend brought him so we could spend some of the day together.  It's always hard to say good-bye, especially when he has just started to warm up to us.  I really want us to all be together again, but that can't happen until Becca is out of the hospital and doing well.  Guess I still need to learn more patience.

Karen and I went to visit Becca and I held her again.  She feels so tiny, especially after holding James today.

March 7

Karen's parents left today while my parents were able to stay and help out.

I felt comfortable enough that I am over my cold to hold Rebecca.  It's hard to believe how small she is.  I learned from my mistake last night and dropped Karen and my parents off at the front door instead of in the parking garage.  By the time I parked the car and got back to them they had a wheelchair.  They would have been ready to go up if not for a bit of a feeding tube mishap.

March 6

We had some trouble with Karen's feeding tube early in the morning (12-3 AM).  It was clogged and nothing we did seemed to work.  Turns out letting it sit for a few hours seemed to do the trick.  Karen and her mom got it cleared this morning and things are looking better.  Karen's mom did a lot of work organizing and shopping for little things for the apartment since we're still getting settled.

Karen's physical therapy appointment went well and she was 'really worked over'.  After dinner (made by Georgia), with mine and Karen's parents, we went over to visit Becca.  Karen got to see how portable her feeding tube pump and bags are.  It worked well though we did have to stop to let Karen rest twice in the parking garage.  Once we were in the hospital it was a relatively smooth wheelchair ride to the NICU.

One of the nurses went to Hobby Lobby and grabbed a little box with slots for pictures and other things on the top and a bunch of space inside.  She swore it was half price and didn't cost much.  They got some hand and foot prints along with a group picture of me, Karen and Becca to go on the box top.

I'm a little jealous of the nurses, they get to spend so much time with Becca but she is in good hands and doing well.

Braden

Today was a rough day. My feeding tube was plugged last night and Braden spent 3 hours trying to fix it. Finally we called the on-call hospice nurse and she told us to just go to bed and try it again in the morning. Probably the best advise we could have received. My Mom tried flushing the tube this morning and while at first it was a little resistant we did get the plug flushed out. Otherwise I would have had to go in and have it replaced. Not my idea of a good time.

The physical therapist came today and gave me a good working over. He gave me a lot more and harder exercises than the PT in the hospital. They just about wore me out completely.

Tonight Braden's parents came to visit. So all of us went to see Becca; Braden and I, and both sets of grandparents. While they would only allow 4 people in the NICU at one time we enjoyed our visit. One of the nurses is the unofficial photographer for the NICU and we were able to get some photos with Becca. They gave us a copy of one, but Braden is going to have to scan it before we can post it.

When we got to the hospital Braden parked where he could and we got to walk in. I had to stop twice to rest, but I made it with help from my Mom and Braden. After PT today and the walk, I was totally worn out. I am not looking forward to exercising tomorrow.

Karen

March 5

Karen slept well last night and was able to rest up even more today.  With some appointments scheduled for tonight she wasn't able to see Rebecca but I hurried over with Karen's dad to get in a quick visit.

Karen's first physical therapy appointment is set for tomorrow.  The swelling in her feet and legs is going down.  For awhile today we could see ankle bones.

Rebecca is still doing well though they did put her on a bit of supplemental oxygen. The doctors and nurses had warned us from the start about the possibility and, in fact, said it was likely to happen. Her lungs and muscles are still developing so she is just getting a little tired. She is gaining weight on the fortified human pasteurized milk. It has some added calcium and I think magnesium and potassium for bone development.

Braden


Sleep is complete bliss.

Karen

March 4

Karen was released from the hospital today.  We made it 'home' to the apartment where Karen's cousin, Leslie, and husband, George, are letting us stay.  Leslie billed it as partially furnished though it has appliances, a couch with love seat, piano, rocking chair, dining table with chairs, bar stools, end tables, a night stand dresser and a bed.  They are great people and have been very generous and gracious to let us stay here.

That story about sums up almost every experience we have had.  Everyone has been so willing to help out and offer anything that we could think of.  It is impossible for me to express the gratitude and love I feel for those who have helped us.  From coworkers and managers to family (immediate and extended), from hospital staff to other hospital visitors, from ward members, neighbors and friends to complete stangers, all of them have helped to turn what could have been a complete nightmare devoid of hope into a bearable experience that can be looked at as a testament of the basic decency and desire in people to help those in need.

The home health people should be here shortly to get Karen situated so there will certainly be more people on the list.  Not to mention we still have a long road ahead of us.  I just wanted to thank you all for every thing you have done.

Braden


I got to breathe fresh air today for the first time in three and a half weeks. It was lovely. I forgot how light it is at 6. I was amazed, but loved every minute of it.

Karen