February

First sewing lesson with GG

Sierra's getting big enough that Olive enjoys some cuddles!

Holy hair tornado!  I've never seen it like this.  Grandma did something special to her hair:)

Grocery store!

And restaurant on the side!

Jaxon's birthday present from us.

Sierra "helped" him open

And "helped" him play with his new gifts

Cake time!

Some of it made it into his mouth, but mostly it got squished.

He needed a bath after this!

Jaxon is sort of/some days giving up his morning nap which means he's ready to sleep directly after he eats his lunch.

Big boy sits at the play table and is going through a phase of wanting something on his head.

A trip to the beach on a BEAUTIFUL day!

Even a dump truck needs a bow if Sierra gets a hold of it.

When one child is playing with a toy, somehow it ends up being the most sought after toy on the planet.

February was a month of recovery.  For all of us.  Jesse came home on the 2nd and felt better after surgery (besides being very sore) than he has felt in quite a while.  He's supposed to get out of bed by "log rolling", not hold either child or anything more than a gallon of milk, not bend down to put on his shoes or socks, for 6 to 8 weeks.  The doctor would have released him sooner for light duty at work, but for his job they require him to be 100 percent to return.  His surgeon agreed to sign papers to release him to 100 percent after 6 weeks, so unless there are some new developments, he should go back to work on March 12th.

It was so nice to not have worries after this surgery.  He healed so nicely.  We were warned how common incision infections are on colon surgeries, and despite some redness for a couple of days, they healed beautifully.  He never had a fever, went off of his pain pills as soon as he got home, and really felt good except for the expected soreness from surgery.  It's a little bit harder to keep from going back to your every day duties when you feel pretty good.  I had to constantly remind him to not pick up the kids and Sierra was good at tattling if Jess acted like he was going to pick her up.  About a week after he had been home her prayer before bed was that mommy would never have to stay away at the hospital for a long long time ever again and that daddy's tummy would get better so he could hold her again.  We both held back tears and thanked God for our sweet children.

Despite handling our absence very well, Sierra really struggled at night after we got home.  She started waking up and coming into our room 3 or more times a night sometimes.  As soon as she would wake up from sleep, she wanted to check and make sure that Jesse and I were still here.  She has loving grandparents that took wonderful care of her, but as a 3 year old, she needed to know that mommy and daddy wouldn't have to keep leaving.

Our big boy turned 1 this month!  We aren't big party throwers, especially for a one year old, but we did celebrate at home.  Jaxon enjoyed his cake (made by GG) and did actually help Sierra open his presents:)  He started walking last month but still did a lot of crawling until a few days after his birthday.  He all of a sudden started buzzing around and left crawling behind.  We do notice if we are away from home, he still does a fair amount of crawling.  Jaxon was weened from his nighttime bottle a few days after his birthday.  It was no big deal to him so I guess the time was right.  He is also transitioning from two naps to one.  It's been a struggle.  He still really wants his morning nap, but if I let him take it, he can't take his pm nap and then is a grump and ready for bed super early.  So when I can, I've been trying to get him at least past lunch (sometimes just barely) and then putting him down.  It sure isn't a fight to put the little guy down when he's worn out!  I usually don't even get through a whole song and he is out!  He learned to throw a ball this month, and when you ask where Jaxon is he pounds his chest and says something like "ADON".  If you ask where mommy is, he'll pat my chest but he still doesn't call me mommy. 

He is much more independent than Sierra was.  If he has toys, he's perfectly happy to play by himself for quite a while.  But he is also very impatient and if he cannot get something to work right he throws a fit and then throws the toy.  We are trying to teach him to ask for help rather than getting so angry.  He is learning!  Now if he gets frustrated he'll come running to the nearest person and ask for "hep".  But the impatience is still there and his tendency is to hit, throw, bite, or yell if things don't go his way.  This will definitely be something that we continually be working on I'm sure.

Jaxon weighs 20lbs 2oz and is 31in long.  His weight is between the 15th and 30th percentile and his height is in the 90th, making his BMI right about the 3rd percentile.  I'm kind of sick of the charts though - and feel like they are pretty much worthless.  I wish they would get rid of them and let babies grow at their own rates.  If a child is malnourished, it should be obvious.  Not only would they be thin, but unhealthy and behind developmentally.  I'll stop my rant here because I know I've written about this subject many times before.

Jaxon had two colds this month, one of them requiring a trip to the ER.  He had a really grumpy day and when I got him up from his nap had a temp of 104.  I almost had a heart attack.  We gave him Tylenol and headed to Immediate Care.  They said that it was probably a virus and that the Tylenol was working and sent us home.  That evening he developed a huge red lymph gland under his ear.  It freaked me out even more and so we decided to take him to the ER.  We were there forever!  It was his bedtime and the poor thing would be limp and asleep in my arms and one Dr would poke at him and then leave.  We'd wait another 45 minutes, he'd be asleep again, and another would come in.  In the end they agreed that it was some kind of virus and we went home.  Over the next few days the swelling got a little better, his fever went down, and we made a trip to see his regular Dr who said that she probably would have prescribed an antibiotic but since he was doing better we just needed to continue to keep an eye on him.  So far neither of my kids have ever had to be on antibiotics and I would love to keep it that way.  If the Dr ever gives me an option to wait a few days or give them an antibiotic, I've always waited, and they always start to improve without drugs.  I realize this is not always the case, but so far so good. 

Sierra went over to stay with my parents because we knew we were going to take Jaxon to the ER.  She's stayed with them plenty of times.  But she talked to Jesse right before she went to bed and realized that we weren't at home and she kind of freaked out.  When we got home, mom and dad were waiting for us and Sierra was sound asleep in her own bed.  Poor girl.

We have such good kids and I am so grateful that they have two sets of grandparents close to take care of them if we have to be away.  Hopefully after Jesse's surgery we won't ever have to be away for this reason again.   I sure love my babies and it is beautiful to see their similarities and differences come into play as they explore the world.  Happy birthday sweet boy!  Don't grow up too fast!

January 2013

Prepping for a contrast CT scan.  Such a good sport!

We are pretty cool.

Motoring!

Sierra starts writing her name this month!

Channeling Beethoven

He loves music just like his big sissy!

Sunshine!

She doesn't get to ride this very much at home on the gravel so we went to GG's for some sidewalks!

Jaxy's first time at bounce house.

Sierra loves this place!

Trying to do some fun stuff before daddy's surgery.  Jaxy's first time at the Osborne kiddie pool.

The sunglasses help her groove.

A ray of sunshine!

And goofiness.

No hands!

My daily hair treatment.

Dress up with my favorite princess.

Surgery is over and on his way to recovery!

FOOD!

By the end of December, Jesse was feeling quite a bit better after getting rid of the infection he had.  January was a month of trying to stay healthy and infection free so surgery could actually happen.  We had several appointments at OHSU and he had to be tested weekly to make sure the C-Diff infection hadn't came back.  He had a contrast CT scan which showed some improvement in inflammation but was still "impressive" to the Dr.  We also saw the stoma nurses who measured and marked Jesse for his possible ostomy.  Every couple of days he had to color over the marks to make sure they stayed until surgery.

We spent a lot of time at home trying to stay away from germs but did get out and about a little bit to do some fun things with the kids.  One of the restrictions after surgery will be no lifting over 10 pounds for at least 6 weeks, this means both kids will be off limits for Jess.  So we took a trip to the pool which Jaxon absolutely loved and also took trips to the bounce house and Papa's Pizza.  Jesse is still on a low residue diet, which means very little fiber.  He cannot have fruit or vegetables unless they are cooked very well and he is supposed to eat white bread.  A very unhealthy diet actually, but it is supposed to help keep inflammation down in his colon.  After he heals from surgery he will need to eat more fiber but should be able to return to a totally normal diet.

The kids and I have gotten so used to having Jesse home.  It's going to be a hard transition for them when he cannot play and an even harder one when he returns to work.  Some days it is so hard to look at the positives and I just want to let negativity take over my mind.  It has been one thing after another and the financial toll that it has taken on our family is devastating.  We met our out of pocket insurance expenses in December, but continue to get bills because of "non participating providers" IN THE HOSPITAL.  Apparently when you are in the hospital if a Dr comes into see you, you are supposed to say don't take care of me unless you are a preferred provider on my insurance.  Like that is going to happen.  Despite all the sick time donated to Jess, the county also decided that once he missed 90 days of work, they were going to stop paying him even if he hadn't been approved for disability yet.  His union president is fighting for us (that's what the $600 yearly union dues are for) to at least be able to be paid until we are approved for disability.  It's one thing to know that you have years of payments to make to the hospital, another entirely to think that you won't have a check to pay your mortgage.

But we have received generous help from our church and families and despite all of these struggles I have watched with joy as Jaxon has had so much time in his young life to bond with his daddy.  Sierra has always been a mama's girl and it is a blessing to have Jaxon be willing and excited to be handed to his daddy. Jesse has been home for so many of Jaxon's firsts, that we would have otherwise been at work for.  It is a struggle sometimes, but I really do try to search for positives.

Jaxon was weaned from nursing this month, right before Jesse's surgery.  After finding out that Jesse's surgery was cancelled again in December, it was like the straw that broke the camels back for me.  I really struggled with stress and my milk supply seemed to almost disappear.  Jaxon was also eating lots of big boy food, and was nursing minimally, so it wasn't really a big deal to him.  It was to me.  I wasn't quite ready.  He is my last and even though his one year birthday is only a couple of weeks away, I wanted it to be on my terms.  I'm sure I could have done several things to boost my supply, but the reality was that it would be easier on all involved for him to be weaned when I was away in Portland with Jesse for his surgery.  He handled it so well just like Sierra did when she was weaned.  It was really no problem at all for him!  I cried.  A lot.  He still gets a bottle before bed, but other than that, he's one step closer to being a big boy.  More tears.  Really I'm just an emotional mess, and I guess all things considered, that's okay.

Some big things this month:  Jaxon starts walking and Sierra starts writing her name.  Jaxon had been taking 2 or 3 steps in between objects for quite a while, but started taking 5 or 6 steps at a time on the 23rd.  There is still a lot of crawling going on, but I consider the little guy a walker!  Sierra has gotten back into reading again and will now sit still for a whole book or two or three.  And they can have more than one sentence per page and she will listen intently.  She'd probably have me read to her all day if I didn't have to get up every couple of pages and see where Jaxon has headed off to.  She eventually gets frustrated and heads off to "read by herself."  It makes me feel so guilty!  Jaxon gets his first upper molar this month and his attitude fits right in with a teething toddler.  He has started throwing temper tantrums if I tell him no, take something away, or if he cannot accomplish something he's trying to.  He gets frustrated VERY quickly if things do not go in his favor.  His tendency is to bite or push or throw.  While Sierra certainly had her moments as a toddler, she was not so physical.  This is something that is shocking and a little scary to me, and I'm trying to figure out how to handle it.  My family laughs and says, "He's such a boy!"  Very helpful. 

Jesse's surgery was on a Tuesday.  They don't tell you until the day before what time it will be so it was recommended that we stay in Portland the night before.  Jesse and his parents headed up to a hotel on Monday so he could start his surgery prep up there and I waited for my mom to get off work and come and stay with the kids and then I drove up by myself.  We ended up having to check in at 530 in the morning at OHSU, so staying up in Portland was definitely necessary.

We were both nervous about the surgery and we talked to several different Drs and the anesthesiologists before they wheeled him away.  I had expected to have a harder time than I did.  Something kind of turned off and I went numb.  We were told depending on the damage when they got in there, surgery could last anywhere from 2 to 5 hours.  So I headed out to wait in the waiting room with Jesse's parents.  OHSU has a neat system that allows you to really be up to date on your family members progress in surgery.  They give the patient a number and then post it up on a screen and it turns different colors depending on what part of surgery they are in.  You also get a call from a nurse in the OR every couple of hours.  My first call was after about 2.5 hours and the nurse stated that they found a fistula (a tunnel from the large intestine to the small intestine) and there were many more hours to go.  She also mentioned that his body was handling the surgery very well and his vitals remained strong.

After about 5 hours I got another call that they were finishing up and the Dr would be down in 40 minutes to talk to me.  It ended up being longer than that (over 6 hours total), and that was the most stressful part of the surgery.  The last hour, that was longer than expected.  All of the other numbers around Jesse's had been out of surgery and cleared out and Jesse's number was still there.  I started to get really anxious but eventually the Dr did come down.  Her first words were that it was very intense.  Three loops of Jesse's small bowel had been pulled down and attached themselves to his large bowel (colon).  They actually hadn't formed fistulas yet, but were in the process.  So they had to cut the three sections back apart and stitch them up.  They were able to do so without removing any of the small intestine though.  They also removed several feet of his colon like planned.  The Dr said after looking inside that she diagnosed it as diverticulitis.  But said it is very rare for it to pull down the small intestine too.  She said it certainly did not present itself as a regular case of diverticulitis, but that there are always anomalies.  She also told us that she was able to do all of this without giving him an ostomy.  She said, the next few days are critical and I really hope he stays together.  Not exactly what I wanted to hear, but she really made an effort to not give him an ostomy and she said that rather than opening him up completely they were able to hand assisted laparascopic surgery, so his incision was about 4 to 5 inches. They sent material off to pathology and so she wasn't able to rule out cancer or Crohn's with 100 percent certainty until those results came back, which generally takes about 7 days.

It was a very busy day at the hospital and Jesse had to stay in recovery for 3 hours before he was able to get a room.  You aren't able to see family members in recovery, so it felt like forever!  When I first saw him, I was terrified because he was a weird pale yellow color and he looked like he was in terrible pain.  But once they got him settled into his bed and started pumping him with fluids he perked up very quickly.  The pain actually ended up being minimal compared to his other flares, and he got better every day.  We missed our babies like crazy.  They have never really been away from us for more than 1 night, so it felt like an eternity.  My mom brought them up on Friday the 1st of February and it was so great to give them hugs and kisses.  The first thing Sierra did was run right to Jesse's bed and give him a big hug.  I stayed the night at Kevin and Helen's that night with my parents and the kids.  It was hard for me to leave Jess alone, even though he was doing fine.  I had been staying on a stretcher beside his bed since he was checked in.  The kiddos sure needed me though.  Sierra just hugged my neck and didn't want me to put her down.  Amy and Ben were even there, and usually if Ben is around, it's hard to get a word in to Sierra.  I soaked in the loves and headed back to the hospital the next day.  He actually ended up being released that day (Saturday the 2nd) after 5 days in the hospital.

All in all I really like his surgeon and think she did an awesome job.  I'm glad we made the trek to OHSU.  After so many failed attempts, and improper diagnosis in Corvallis, I'm just not sure we would have had the same outcome if the surgery was down here.  We'll never know, but I feel like we were led to the right Dr after a long process.  I think we spend so much of our life looking at how much better and easier things could be.  But while in the hospital I kept being reminded of how much worse things could be.  When Jesse was up and able to walk around, one of the loops we took was right past the Knight Cancer Institute Wing.  We thanked God every time we walked by that Jesse's recovery room wasn't in that wing.  And the Starbucks at OHSU is located in Doernbecher, so when I went to pick up coffee, I also repeatedly thanked God that we weren't up in Portland for our children.  The last 6 months have been very rough, but we have also been blessed.  Jesse is considered healed in 6 to 8 weeks and we can go on with our normal life.  He has a belly full of scars, and a few feet of colon missing, but he will be healed.  This is a reason to rejoice!


PS!  After this post was written, all pathology results came back negative for cancer or Crohn's!  Hallelujah!
 

December

Sierra and her beloved baby named Hump.  No she does not know how funny that is.

The return of the rains brought Sierra great joy!

Daddy felt good enough to rake some leaves!  A reason to celebrate!

Sierra's new buddy.

Dance party!

Covering mommy with "bandaids"

Too many cooks in the kitchen!

A skinny but happy guy to be home.  Even if that means wearing pink bows.  I don't think he reads this blog very often, so hopefully he won't see this one:)

A swimming pool trip with daddy.

Daddies are much more fun than mommies sometimes!

Learning to play together......

Sierra being chased by a Christmas robe donned Jaxon!

An afternoon nap together:)

A new helper for mommy.  I am so grateful.

Pepsi Lights!

Mostly all she talked about was that she got to sit on my lap WHILE we drove around.  Don't call the cops!

In search of the perfect tree....

This one matched her pants.

This one was just her size

 

We found it!  But we're so big you can't really see it.

Griswold style!

 

ALL the decorations ended up in the same general area.  It was so cute, I left it just like this.

Jesse captured this perfect shot!

She enjoyed throwing snowballs a little too much.

In the spirit of the season, here's a little jingle for you from Sierra.

Christmas Eve with the Lee family

Christmas Morning!  So excited when she saw her new dollhouse!

Christmas evening with the Skaggs

Waiting to see the specialist at OHSU

December was a month of survival.  We did decorate for Christmas, go out to find a Christmas tree in Bellfountain, and look at Christmas lights.  We are holding it together for our children.  Most of the time.  Jesse still struggled with a mild fever and stomach upset through the first couple weeks of December.  I made him schedule an appointment with his Gastro just to see his thoughts on the mid December surgery, and get some more info on what was found during the scans (CT, barium testing, and colonoscopy) in the hospital.  The Dr actually ended up coming in during his vacation to see Jesse since we told him that he was scheduled for surgery the following week.  He agreed with the recommendation for surgery, mentioned that Crohn's wasn't off of the books yet, and said that he believed Jesse needed to be tested for a certain kind of infection before he had the surgery.  We saw him on a Thursday and Jesse's surgery was scheduled for the following Monday.  On Sunday night, after Jesse had spent the day prepping for surgery, the Gastro called at 9:00 at night to tell us that Jesse's test results came back positive for an infection and his surgery for the next day had been cancelled.  

I just about had a nervous breakdown.  Jesse handled the news much better than I did.  I spent the whole night awake with chest pain literally feeling like I was about to have a heart attack.  My husband, the man that this is all happening to, fell asleep within 2 minutes like normal, and slept the whole night.   Sometimes I really hate being a girl.  

After this news I got pretty adamant about us going to a different facility for testing/second opinions/specialists.  Jesse's primary Dr referred us to OHSU and we saw a colo-rectal surgeon on the 27th of December.  We went up there nervous and unsure of what she would say.  She came in and told us that Jesse's scans were "impressive" and that none of this added up to diverticulitis.  She said everything from the fever, infection, C diff, and even the blood clot all pointed a finger at Crohn's.  She said there is no doubt he needs surgery.  She said she is doubtful that it will be a laparoscopic surgery like the Surgeon down here assured us it could be, and she also said that she believes that he will need an ostomy for 6 weeks to 6 months afterwards and then another surgery to reverse that.  Heavy news.  We'd heard some of those things before down here, but then the very next Dr would say the opposite.  She said that none of this will be proven until surgery.  So he will go into surgery with only an idea of possible outcomes when he wakes up.  She said obviously without actually looking in there, she cannot be 100 percent certain.  We ended with her saying that she hopes she is proven wrong, and after getting in there she hopes she will be able to do a simple surgery and find that it is indeed just diverticular disease.  Surgery is scheduled for January 29th unless he comes up positive for the C diff infection again in the mean time.

Despite the @#$%^&; that is going on in our heads and in Jesse's body, we really did try to provide a fun Christmas experience for Sierra.  Jaxon is clueless as to what the tree and treats are all about, but Sierra soaked it all up.  Last year we tried to get Sierra to help decorate the tree, but after about 2 ornaments she got bored.  This year she put up every single ornament we had, and wanted to go buy more.  She had a ball going through the boxes of Christmas decorations we had.  She loved her advent calendar, the Christmas lights, stories of Santa, and the holiday cartoons on TV.  She asked most nights before bed if tomorrow was Christmas.  Last year when she sat on Santa's lap for the first time and he asked what she wanted for Christmas she said cookies.  We never made it to a place that had Santa this year, but when we asked her what she wanted most of all, she said a car.  Wow.  One year makes a heck of a difference!

Unfortunately the bills of the past 4 months caught up to us right about Christmas time.  Jesse and I decided not to buy gifts for each other this year although he did make me a beautiful bench out of wine barrel slats.  Jaxon is unaware of the concept of gifts and so he was happy to play with one or two new toys on Christmas morning.  I had saved up some giftcards I had earned over the year and paired them with some sales and I was able to score a new 4 ft dollhouse, and several other toys for Sierra for Sierra for under $50.  I was pretty proud of myself!  

I just have to brag about the people in our life right now.  Our family, friends, Jesse's coworkers, and our church have been amazing.  Jesse's received cards with hundreds of signatures from different departments at work as well as family and friends.  Some of his coworkers even went together and got us a grocery giftcard.  He was donated almost 500 hours of sick leave.  Unfortunately he won't  get to even use half of it because they will put him on disability after 90 days of missed work.  But the fact that people would donate him that much time was overwhelming!  It's also made me so proud as a wife to see how much his coworkers love him!  

We had family rake leaves, cut kindling, bring us groceries, call to ask what we needed and tell us that we were being lifted up in prayer.  I cannot tell you how grateful we are.  But the biggest surprise was a check in the mail a couple days before Christmas.  It came in a Christmas card without a return address.  The card had some lovely words of encouragement and a check fell out.  It was a cashiers check and the amount almost exactly covered a large bill that we received a few days after Christmas (of course I didn't realize how amazing that was yet).  I cried.  And I felt desperate to find out who sent it.  I felt the need to say thank you.  I called around trying to find out if anyone knew.  But my mom put it simply, if they had wanted or needed a thank you, they wouldn't have went out of their way to be anonymous.  AND after Jesse and I talked about it and we realized sometimes too, people give anonymously for the recipient.  To reduce awkwardness and feelings of constantly needing to show gratitude.   All I can say is that it was a Christmas miracle.  The Lord has provided for us in so many ways and I cannot believe that I spend so much time worrying.  Someday, I hope we have the ability to bless someone in the same way.  I know how it feels to be on the receiving end and I would LOVE to be able to make someone feel that blessed.

Speaking of blessings, our littles are starting to play together.  Jaxon watches Sierra and tries to do all of the things that she does.  He pretends to take bites of play food, pours tea into a cup and then sips it, loves to put things in and out of Sierra's play kitchen.  They dance together, chase each other, play the piano together.  It melts my heart.  There are also moments of toy taking, dress tugging, and recently when Sierra snatched something out of Jaxon's hands he went right for her belly with his head (she was on the floor on her knees) and took.her.down.  I probably shouldn't have laughed, but I was so shocked, and Sierra was too.  He's little enough it didn't hurt her it just started a wrestling game between the two of them.  They both ended up giggling like crazy.  Jaxon is definitely starting to get a bit of a temper and will sometimes throw a fit if I tell him no.  He will flail around on the ground or even bonk himself on the head.  It's one of those things that sometimes totally freaks me out and I don't know whether to run away in horror or laugh.

Despite the trials of this year, we are grateful.  Grateful for two healthy, beautiful, smart children.  Grateful for a warm, comfortable home, wonderful family, and friends.  2013 will hopefully be a year of renewed health for Jesse!  Merry Christmas and Happy New Year to all of you!