Thursday, January 30, 2014

Prayer Request

A young woman (Jana) who lives about a mile from me was diagnosed with leukemia (AML) a month ago.  She's been in the hospital ever since.  She had her 30 day bone marrow biopsy to see if her cancer has responded appropriately to the chemo.  This test result is really important.  If she hasn't responded well she will need a bone marrow biopsy and her long term survival rate drops.

Please pray that her results will be better than expected!  I am praying that it will be completely undetectable!

To add to the sorrow of this story, her husband (John) was diagnosed with Nodular Melanoma, stage IIIA about 4 months ago.  He has been receiving chemo since September and underwent two major surgeries as well.  This is a very aggressive form of melanoma. 

They have two young daughters (6 and 7). 

I really can't stop thinking about them.  Please pray!

Tuesday, January 28, 2014

How Long Do I Have?

If you could know the answer to that question, would you want it?  I stumbled upon an article in the New York Times today.  It is written by a young doctor who was diagnosed with aggressive cancer during his residency.  He lives in the San Francisco area.  Although his story sounds similar, it is not my brother.

This article makes me sad.  I hate to think that other people/families have to endure a similar hardship. But they do.  I think part of the reason this article has made me think is because Daron (hi!) has said some of these exact things to me.

Anyway, read it if you want.  It will make you think, I think.

How Long Have I Got Left?

Camera Shy

I got the real camera out yesterday with the goal of capturing a photo of Kyle so I could compare him to Lainey at the same age.  Well, Kyle is Mr. Serious so catching him with a grin on his face is tough.  He also really, really seems to be suspicious of the camera or phone and dislikes the flash.

So here they are....






Impressed?!
That's what I thought. Ha!

So I moved up to the bathtub.
Surely bathtub photos would turn out.  Right?
Well, even Carson (aka Mr. Smiley) decided not
to smile.  





C'mon baby!
I finally gave up on getting a shot with Kyle smiling so I turned back to Carson who obliged.



To see Lainey at 5 months go HERE

Sunday, January 26, 2014

Snow Day, or I should say week!

During our RSV adventure it decided to snow 4 inches.  Not only did it snow, it stayed "cold" so the snow stuck around.  This is fairly unusual for our area and always results in a ridiculous amount of school cancellations.  This week may have won out as most ridiculous cancellations ever (at least in the 7 winters I've lived in the DC area). 

So ridiculous that my kids haven't been to school in 10 days.  Yep.  10 days!  There was a planned four day weekend (Friday-Monday) but then they cancelled four more days of school due to the snow storm.  Tuesday was canceled due to snow anticipation.  It didn't start snowing until 3 PM but that was too risky, so no school that day.  (Talk about a LOT of disappointed kids waiting for the snow.)  The snow did show up thankfully which resulted in no school on Wednesday.

Apparently I am somewhat naive because I was surprised when school was again cancelled Thursday.  Realizing I forgot how finicky MD is when it comes to snow and how looooong it takes them to clear the roads I refused to be surprised when school was canceled again Friday.

The school system actually called our house again tonight (Sunday).  Why?  To remind everyone that school would be starting on time tomorrow.  Hahaha!

Erik is my WI kid at heart.  He has played outside for approx 16-18 hours this week.  I managed to go sledding with him twice which was fun.  I do not miss the cold WI winters (especially this year as it's been below zero for almost 6 weeks) but I do miss the snow.

Here are some fun photos my neighbor took today...



"Fun" with RSV

Almost two weeks ago Lainey had a pretty bad cold.  No fever but it was clear she didn't feel well.  She didn't missed school but I did have her skip gymnastics and take a few naps that week.  She said 25% of her class was absent that week so clearly this bug had been shared amongst friends.

Well, about 3-4 days after Lainey got sick Carson started sneezing.  This was quickly follow with a cough and high fevers.  After four days of a bad, bad cough and fevers spiking up to 105 I decided to take him into the ER to make sure he didn't have pneumonia.  (Sunday)   At that point he was still drinking fluids but hadn't eaten anything for 4 days.  They tested him for RSV/Influenza.  He had RSV.  Once they knew that they sent us home with Prednisone and told me to continue the albuterol nebs every 4 hours.  He went to bed early, woke up with a 105 degree fever at 4 AM.  Went back to sleep and woke with a fever again at 0700.  He looked awful for I called the pediatrician and asked to bring him back in.  They were booked full that day (as usual) and suggested I could watch him at home since he was seen the day before and fevers can last up to 10 days.  Okay.  So we gave him a big dose of tylenol and ibuprofen and hoped for the best.  I took Erik and Lainey on a walk to a local playground.  About 2 hours later Victor texted me and let me know Carson was back up to 105.

The second I walked into the door it was quite obvious he needed to be admitted to the hospital.  He was glassy eyed and delirious.  He hadn't ate or drank anything that morning and could barely sit up.  So I called the pediatrician back explaining that he looked awful and they let me bring him in right away.

His pulse ox was only 85% awake (well as awake as he got at that point).  The day before it had been 93-94%.  So they gave him another nebulizer treatment.  It improved temporarily but within 20 minutes was back in the mid 80's.  So they started him on oxygen in the office and call the in-house pediatrician letting them know he needed a bed in the hospital.

Once in the hospital an IV was started.  He was so sick he barely flinched.  Thankfully the doctor got the IV in on the first try.   They ordered an x-ray, blood cultures, and lab work.  The blood work looked okay.  His x-ray showed bilateral pneumonia (likely viral).  They started him on IV antibiotics and oxygen as well.  After 18 hours on oxygen he was able to maintain 90-93% Oxygen saturation on room air so they stopped it.   He was still completely lethargic and unable to tolerate po intake.  He spiked up fevers for a total of 7 days.  His fever broke on Wednesday afternoon.  After that he seemed to wake up, his O2 sats jumped to 100% (had been 93 for the 24 hours prior), and he ate 1/2 a sandwich and drank some juice.  So we were able to go home Wednesday evening, approx. 60 hours after being admitted.

We are now 10 days from the start of his RSV journey.  He is still sleeping about 15 hours a day (down from 20-21 hours a day) which is more than normal.  He is sad to be left alone at all, which isn't normal.  But he is probably about 70% back to normal.

We received good care at our small town hospital.  This adventure reminded me how thankful we should be for modern day medicine.  Once Carson was admitted I immediately relaxed because I knew he was getting the help he needed.  If he had gone much longer without IV fluids or oxygen I am certain his other systems would have started shutting down.  Thankfully, help was available to us when he needed it! 

I am planning to take Carson to a pulmonologist to see if he should be on daily preventative asthma medicine as this is his third case of terrible bronchiolitis/pneumonia.  2nd admission (Although one of those was canceled after they watched him for 12 hours in the ER) and 2nd course of prednisone.   I'm afraid Carson and Erik both inherited my crappy lungs.  I have had pneumonia repeatedly throughout my life, both as a kid and adult.  Not fun at all!  So sorry boys!

I am thankful my happy little boy seems to be returning and am praying germs leave our house alone for a while!!

 In the ER Sunday, still awake but miserable


 Glassy-eyed boy on Monday just before headed to the doctor
 Sleeping in the doctor's office, waiting for a hospital bed
 "I want to go home."
 O2 sats on admission, immediately post-nebulizer treatment 
(They ranged from 83-88 prior to starting oxygen.)
 Oxygen and IV in

 Concerned siblings visiting the next day

 Lots and lots of snuggle time with my sweet boy
 So much better!
Time to go home!

Kyle- 5 Months!!

Wow!  How it is possible that my baby is 5 months old already?!  Somehow 5 months sounds so much older than 4 months!

This month has been quite chaotic.  During the past 30 days Kyle's been to WI and California.  Victor was out of town for a few days.  Lainey brought home "cold" germs from school which ended up being RSV.  Kyle has bronchiolitis but is holding his own at home.  Carson ended up spending three days in the hospital.  Poor boy!    So as I said, this month has been chaotic.

Kyle is still nursing exclusively.  He nurses every 2-3 hours during the day still.  Night time feeds have varied.  He nursed all night long when we were on vacation.  I retrained him when we got home which meant he was back to 1-2 feedings in a 12 hours period of time.  Then the RSV hit so now he's back to 3 feedings in 12 hours.  Once he is healthy I'll let him cry a bit and assume he'll stretch his feedings back out again.  He is still swaddled at night and LOVES the swaddle blanket. 

Kyle always hangs on to my finger or my shirt when nursing.  Such a sweet, tender moment.  I will miss this!

Kyle got his first haircut this month.  He had a mohawk and the "mohawk" portion was 3-4 inches long and kind of ugly.  So I had it chopped off.  His hair is dark brown and really, really fluffy.  His eyes are still dark grey/black.


He is 15 pounds 7 ounces (35% -full term chart)

Kyle has found his voice this month and coo's and ahh's all day long.  He still seems to be quite serious but does smile and laugh throughout the day.  He strongly prefers to be held although does enjoy his "jumper" for short periods of time.  He reaches out and grabs at the toys which is cute.  He can "sit" (slumped over) for 30 seconds at a time.  He still only rolls from front to back.

 One of my favorite things about having a new baby in our family is watching the complete and utter joy that Lainey gets from having a baby brother.  She cherishes him and it is really, really sweet.

Kyle is a wonderful little baby and it's hard to imagine our family without him.  We are thankful for him!





(Filming compliments of Lainey)

Friday, January 24, 2014

4 Minutes Of My Life

Well, we are home from the hospital.  My kids have been off of school since LAST week Thursday.  Yes, LAST week!  Why?  Well, there was a planned four day weekend followed by 4 (FOUR!!) snow days due to 4 (not 14) inches of snow.  (Eye roll)

Anyway, I will do a post about RSV invasion 2014 but not tonight.  Instead I will leave you with this snapshot into our daily lives.  Erik was outside sledding but the other three kiddos are in it.  Enjoy...


Monday, January 13, 2014

and to California!

About 5 minutes after getting home (to Maryland) from WI, I started shaking and had chills.  I was freezing cold and couldn't warm up.  I had told Victor earlier in the day that I felt like I might be getting mastitis again.  At first I just thought I was cold because our house was fairly cold but just in case I decided to take my temperature.  I had a fever which confirmed the diagnosis.   It was New Years Day so all the pharmacies in our "farm" town were closed of course.  So Victor, after putting the kids to bed, drove 35 miles to the nearest 24 hour pharmacy.  Thankfully, the fever broke after 24 hours so my trip to California was messed up.

36 hours after stepping foot in Maryland, Kyle and I were back in the airport headed to California.  It almost never snows where we live and of course it snowed 5 inches that morning.  That wouldn't bother me much in WI but driving in snow when no one is used to snow is scary!  About 3 miles from my house a car spun out in front of me.  It thankfully, just did a quick 270, stayed on the road, and was able to keep driving, but I was a little nervous.  I only saw one other accident on the 60 mile drive and made it to the airport on time. 

Anyway, here are the highs and lows from California!

Highs.....

1)  Spending time with Daron and Feifei!

It had been a year since I'd seen Feifei and 7 months since I'd seen Daron.  This was my 6th time I've flown cross-country to see Daron during the past two years.  Feifei works unusual shifts but she was home most of the time I was there.  It was nice to spend time with both of them. 




2)  Introducing Kyle to his aunt and uncle


3) Seventy and Sunny

Headed out for a walk

Well, it was really about 65 degrees and sunny but still great. While I was in California it was -45 in WI.  Just a 110 degree difference.  Ha!

4) Apple products --

Daron finally has an iphone which I didn't know until I saw him.  Facetime seems much easier to me than skype and already Daron's chatted with the kids and given Erik some soccer tips.  


Lows....

1) Sleep or lack thereof

This lack of sleeping theme continued.  Kyle went through a little bit of sleep bootcamp this weekend so he's back to about 6 hour stretches which could still be improved but much better than every 90 minutes like we did while traveling. 



2)  Seeing my dear brother struggle.  Daron has amazing spirit and manages to enjoy his life everyday even though he's had three life-threatening infections, a relapse, a battle against graft vs host, and devastating joint damage due to chronic steroid use all in the past 4 months.   The fear that he will not be able to watch my kids grown up or that his quality of life won't improve is always there.  Oh how I wish this wasn't part of his story.   Overall though, I came home very impressed by his fight and felt that despite recent battles he seems to be about the same as he was in May.  Please keep praying for him!


I had to wake Kyle up in the cold DC air after we landed 
and he was not very happy about it!!


To Wisconsin We Go

Well, the past 5 weeks have been a whirlwind in our house.  It started with Victor being down and out for a few days in mid-December.  A week later I had multiple precancerous moles surgically removed which wasn't a huge deal but it did slow me down and mess up my routine a bit.  Christmas was a few days later which we spent at home (in Maryland).  Right after Christmas we headed to Wisconsin for 5 days.  I had 36 hours between trips which  was kept busy with a second bout of mastitis.  Then Kyle and I headed to California for a few days.  As soon as I got back from that trip Victor headed out of town for a reserve trip.  Phew!  I'm very happy to be home although the trips were all great.

So what did we do in Wisconsin??

 Highs.....

1)  87 year old GG flew from Kansas to join us in Wisconsin!  I am so glad my kids were able to spend time with her.   I hope I am as fortunate as she is and able to enjoy my great-grandchildren someday!
 "Selfie" with GG and GG with 4 of her 7 great-grandkids

2) Sledding and Snowshoeing!

We planned this trip home very last minute.  I partially planned the trip home because I knew there was snow on the ground.  My parents live in the country and have an awesome sledding hill.  We all spent lots of time sledding (Despite high temperatures around 5 below zero!).  Erik and my parents also went snowshoeing multiple times.  Erik just LOVES snow and all outdoor activities.  I was so glad he was able to enjoy lots and lots of time outside with my Dad and Mom.



3) WaterSpa

My parents live in rural Wisconsin but it is surrounded by lots of nice places as there is a fair amount of money in the county since both Kohler Co. and Sargento have their headquarters there.  My mom and  I spent 5-6 hours at the waterspa.  I've been there twice before.  The waterspa is completely wonderful although it really does ruin any other massage experience you might have.

4) Family and Friends

We were able to spend time with my parents, Kevin and Meg, Colin, my grandma, plus many friends/family (Nicki and Adam, Scherers, "Ditters", Anne and Aly, Buries, Amy and her friend Robert).  If only the weather wasn't so COLD in Wisconsin.  There are a lot of people that I miss seeing on a regular basis.

 Don't you think Carson resembles his grandpa just a bit??


5) No one puked!

We made it both ways without Erik vomiting from motion sickness or a virus.  That's a rarity! (Bonine might be the answer.)


 Big kids sat by themselves on the way there
Two boys sleeping on the plane




Lows....

1) One of the 6 cm incisions on my leg completely dehisced.   I realized this at 2:45AM on Monday morning after feeding Kyle.  I tried to ignore the large hole in my thigh for a couple of hours until I finally decided I needed to find someone to stitch it back together since I wasn't going to be home for a week.  My Dad was kind enough to take me to the ER.  The doctor put in a couple of interrupted stitches plus steri strips.  Thankfully, that held it together until secondary healing took place.  I just took the stitches out last night.  So far so good.

2) Sleep, or lack thereof.   Kyle however was up every 60-90 minutes sometimes staying awake for 2 hours at a time.  Painful painful for his mother.  Traveling with 4 very small kids is always an adventure.  On a positive note: Erik, Lainey, and Carson all slept very well.  This gives me hope that in 2.5 years we might be able to travel AND sleep.  Haha!


It was a great trip home!


Friday, January 10, 2014

"Big Sisters Rock"

One of Lainey's favorite shirts has that statement on it and I couldn't agree more!  Lainey is such a wonderful big sister.  She LOVES babies and is so good with Kyle.  She is always happy to hold him and isn't intimidated when he gets a little fussy.   She immediately starts problems solving (does he want wrapped up, his plug, new diaper, hungry?!).   I have not taught her any of these things, it just seems to come naturally.  Erik loves Kyle too but the second he lets out any sort of squak Erik immediately calls for me.  Haha!

Victor is out of town again.  Last night I meant to turn down the monitor after getting up a second time and instead seem to have turned it off.  Six hours later I woke up and realized it was starting to get light out.

I turned the monitor back on and heard silence.  I hurried to Kyle's room and found sweet Lainey holding him on her lap in the crib, reading him a book.  He was happy as a clam.

I fed him and put him down for a nap (she must have been in there for a little while).  When he got up I went started to change his diaper and get him dressed for the day.  When I went to change his diaper I realized that it was dry.    Night trained all ready at 4 months?!  Nope.  You see his sweet 4 year old sister not only read him books, rocked him, sang to him, and kept him happy while I was inadvertently snoozing she also changed his diaper.  Haha!

Big sister really DO rock!  
(She's going to be one awesome babysitter when she's older.)

(P.S. I do realize 4 year old kids should not be in charge of their siblings which I gently reminded 
her of, after thanking her for being such a great and awesome sister.)

Thursday, January 9, 2014

Kyle - 4 Months (or so)

I am still too tired to blog much but figured I'd better get Kyle's 4 month post done before he is 5 months old!

4 Month Stats: (taken 12/27)
14 pounds 3 ounces - (50% adjusted/30% for full term)
24.5 inches (60% adjusted/33% for full term)
16 inch head circumference (50% adjusted)

Kyle is doing very well.  He definitely doesn't seem like a newborn anymore.  He smiles and laughs at us daily.  He is still fairly serious so I have to work pretty hard to get a giggle out of him.  Thankfully, Daron and Feifei heard one of his belly laughs. 

He reaches out and grabs for things - hair, toys, etc.  He has good head and trunk control.  Does not like tummy time but can really hold his head up well now and look around while on his belly. 

Still nursing exclusively, every two to three hours, around the clock. Unfortunately, his stellar sleeping habits have up and disappeared.  For about a month he slept from 6 pm to 3 AM without waking but for the past three to four weeks I have been up with him every 2-3 hours.  This is very, very painful.  I think it started with a growth spurt and then was exacerbated by all the travel.   We are finally home and ready to get back into routine.  I am hoping all the kids stay healthy so the sleeping has a chance to improve again.

During the past two weeks he's been to both WI and California.  A well-traveled infant.

He is a cherished little baby!  Here are a few photos taken recently....