Friday, January 20, 2012

Every Breath

The following post is wordy, I know.  Brook asked me what I was working on and  I said, "I am trying to write about you being sick but it is going on and on and on."  She said, "That sounds about right because it did go on and on and on!"
I wrote this entry as a way to document what has happened to her.  Do not feel obligated to read it, no one's feelings will be hurt.  I cut out a lot of smaller details but it is still long.  The short version is this:  She couldn't breath, we found the answer and I am grateful for her, for medical advancements and for the Lord in our lives.

Brook didn't breathe from the beginning.  Everyone told me that the second childbirth experience is easier than the first.  They lied.  I'll make a long story short but for all who are squeamish about childbirth stories you might want to skip ahead.
 Labor had been long, the final stages had been long.  I tried and tried but she was stuck and I knew it.  I told the nurses "this baby isn't moving, something is wrong."  The nurse smiled and patted my hand and said, "It's alright Honey, women have been having babies for centuries, you just have to push harder." (I have never wanted to slap a person so much in my life.)  After more than two hours of this I was completely exhausted and began to cry, sob really.  I was loosing it.  John finally convinced the doctor that I knew what I was talking about and they had better do something to help or call someone in that knew what they were doing.  That is about the time the monitors all went off, they had lost her heartbeat.
  The doctor pulled out a contraption that looked like a toilet plunger and said, "This is going to hurt."  (Thank you, Captain Obvious!)  The room began to fill with other nurses and doctors as they began to prep for surgery in case the suction didn't work.  The doctor tried to pull her out but was pulling me off the bed and the bed across the floor.  He had John grab hold of me under my arms and pull while he and the nurse put their feet on the bed and pulled the other way.  There she was, blue, shaking and in pain.  Most children are born crown of the head first.  She was in the birth canal with her head sideways.  The more I pushed, the more tight she became with her left ear pressed against her shoulder. It hurt her to move her for about a week.
  They never laid her on my stomach like they usually do, she was taken away to the warmer and worked over. I couldn't see her, I couldn't hear her.  After what was only a few moments but what seemed like forever some one said, "Oh, there she is!" At the same time someone moved out of the way and we made eye contact.  I knew her name, I knew we'd be good friends and I knew with that look she was saying, "That was not a pleasant experience!"  She never cried, only took in little fluttering breaths.  They took her away and I went into shock and passed out.  I don't remember much until I awoke a few hours later in my room.  I was informed that she had spent some time in an oxygen tent but was doing fine.  They brought her to me and I finally got to hold her.  My favorite part of giving birth is holding the baby's face close to mine and smelling the sweet scent of a newborn's breath.  As I held her I was grateful that she was breathing at all and that I got to keep her.  I was grateful that the ordeal was over.
  Fast forward a few years to First Grade.  Brook became sick and was having difficult, labored breathing.  I took her to the emergency room and she was diagnosed with asthma.  The diagnosis hit hard but I knew it wasn't the end of the world.  There is medication and treatment and ways to keep it under control and we just needed to learn what to do.  We learned what her asthma triggers were and did our best to avoid them and prepare for the ones we couldn't avoid.  Feeling that asthma shouldn't be an excuse to not participate, we also kept her active.  Life moved on.
  Fast forward to a the last couple of years.  The asthma was getting worse and worse.  We tried different medications, and combinations of medicines.  After a year of this her breathing was so bad that she became winded just going up or down the stairs. I saw her have to rest in the middle of sweeping the floor. She had to drop out of her activities and was missing a lot of school. She was in the emergency room several times. The Asthma specialist finally said there was nothing else she could do.  If Brook wasn't reacting to the medication then there must be something else wrong.
  This brings us to last spring when the tests began.  One of the first was also one of the worst.  They measured her breathing capacity and then poisoned her then tested her again.  When I signed the permission forms to let them run the test I was told that they wouldn't let her breathing get bad beyond a certain point.  They underestimated the condition Brook was in and her breathing levels dropped well below what they intended and then they had difficulty bringing her back!  She was trying not to panic knowing it would make it worse. She spent the next couple of days suffering.  I felt like the worst mother EVER!  I had allowed them to do that to her.
  She had her heart and lungs tested in many different ways.  Everything from MRI, to utlrasound to treadmills.  Everything was normal except for some blood work.  She tested positive for schleroderma, or hardening of the organs.  We were left with that diagnosis for several months while we waited for an appointment to open up to see a rheumatologist.  I was beside myself with grief.  I knew what schleroderma was and I wasn't sure I could stand to see my precious girl suffocate and know there was nothing I could do about it.  I can't put into words what it was like to see her suffering so.  It was ripping my heart out.  Meanwhile she was left on the heavy asthma medications just in case.
  We finally got to see the auto-immune specialist and he reviewed her file. It turns out that some of the medication she was taking causes a false positive and we needed to get her off of it right away.  We have since done more lab tests and the SD numbers are going down like they should.
 This was a huge relief but we still didn't know what was causing her difficulty.  We were now well into October. At the beginning of all this she had received a priesthood blessing that told her to be patient and the doctors would be inspired with the answers to help her.  At this point I was tired of being patient.  I wanted to know!  I wanted the problem to be found so we could fix it.  I know that Brook was frustrated too but she never complained.  Every time I would ask her how she felt she'd say, "the same," or "It's not pleasant."  Then she would smile to reassure me.  I found it fascinating that she was the one comforting me.  She knows I like to be in control of everything and that I felt out of control in everything because of worry for her.  She is sweet and kind and wise.  I am trying to be more like her.  One evening I was thinking about the doctors being inspired when the lung specialists called with an idea.  He wanted Brook to see an ear, nose and throat specialist and a speech pathologist.  It sounded crazy but we were desperate and I had been praying for a new idea.
  The ENT put a camera up her nose so he could see straight down her throat and the Pathologist had her preform a few tests and try some different exercises and we had a diagnosis;  VCD, vocal chord dysfunction.  It seems Brook's vocal cords close when they aren't supposed to cutting off the air supply. Stress makes the condition worse and is not uncommon in teenage girls who are high achievers.  The heavy asthma medications cause it to to be worse too.   She has spent the last few months in a type of physical therapy teaching her to control it.  She was asked on her first appointment to place herself on a scale of 1 to 10. One being no problem breathing and 10 being unconscious.  She rated herself at an 8.  Still conscious but feeling dizzy.
  Like everything else she does she put herself 100% into getting better.  It has been hard and there were tears sometimes but she worked through it.  She graduated from therapy this week placing herself on the scale at two! It was two because she could breath but still has to think about doing it right.  She is off of all asthma medication except for her rescue inhaler. Two weeks ago she gave a speech and was able to breath through the whole thing. I was with her afterward when someone asked her how she was doing.  She was able to answer and tell the whole story.  I found myself trying to answer for her (it has become my habit to jump in so she wouldn't turn blue or feel frustrated when she couldn't get the words out.  I'm going to have to work on not doing that to her anymore.)  When it occurred to me what was happening, that I didn't have to talk for her or stand so close or be prepared to rescue her, I cried.
    I know other mothers who have not had the happy outcome we have had. My heart goes out to them.  I can't imagine loosing her.  I am grateful I have not had to endure that and this knowledge makes her life that much more priceless.  I am grateful to my Lord and the sweet comfort he sends during trials.  I snuggle up next to her whenever I can and find myself distracted by her breathing.  I don't count the breaths any more or time their duration.  I just listen.  Every breath is precious.

Monday, January 16, 2012

Fall, the most beautiful time of the year.

I love Fall.  Leaves, cooler weather, the slant of the sunlight, my nesting instincts.  Yep, I love it!

Pumpkin Carving Fun

Tossing games with the spoiled
tomatoes from the garden
(it was very neglected this year)

I have gotten very frustrated with the changes in dishwasher soap.  The cup on the left is what the new phosphate free stuff has left on all my dishes.  I was voicing my frustration about it when with a group of other moms and this product was recommended!  The cup on the right is after just one washing!  Yipee!  Let me do a happy dance in my kitchen!
Clean dishes at last!

Can you tell which creation belongs to the 12 year old boy? eeewwwwww!

Hailey with Sam and Anni

Halloween 2011

I didn't know I was coming down with shingles for a while.(see previous post)  You tend to feel bad for about a week before the blisters start.  I have always had trouble living in the north when it starts to get dark earlier and earlier in the day. I know it's coming and brace myself for it every year.  (I get especially excited for Christmas because the shift toward more light begins!) I thought that this was just going to be a particularly hard winter in that way. I am glad I was just sick and that it wasn't depression.  I thought if it was this bad already, I will never make it through. I am very relieved that I felt bad for another reason. (It has been a relatively sunny winter so far, so that is another blessing in my life!) So one night I just couldn't face cleaning up after dinner and asked the kids for a volunteer to do it for me.  (insert cricket background noises and note that I had not cleaned up the kitchen at all that day) After a brief but uncomfortable silence my sweet Sierra volunteered.  I told her that I was grateful for her generosity and love and as a reward I would pay her 5 bucks if she did a super-duper-exceptional job on it.  (Not my best parenting moment, I am not proud of it but look at the results!) I'd say she did a super-duper-exceptional job and earned every penny!
Sierra added paper "Sparkling Clean" stars for effect!

Missing Dad

John travels sometimes as part of his job.  I usually don't mind too much.  I miss him, it's hard to fall asleep without him, but generally we are OK.  I've had to fix toilets, pay bills and take kids to the emergency room without him sometimes even when he is in town so I am fairly confident in my abilities to take care of our family.  I also like that he trusts me to do it.  I know he is proud that I am a strong woman that he doesn't have to pamper  all the time.  I've tried to teach my daughters to be strong as well.  Our favorite mantra when things get tough is "We are L.D.S. Women.  We can do anything!"
This trip was different, very different.
Most of the time John is only gone for a few days or maybe two weeks at most. This is just enough time to get some projects done and enjoy some chick-flicks he wasn't interested in seeing.  This time we knew he would be gone for three weeks, but then work didn't go as well as planned and the three weeks became four.  Then the four became five and then a few more days more. (Sierra is sitting next to me as I write this and she informed me that my last two sentences rhyme.  My rhyming abilities are a gift that I'll write about later)
A digital Love Note to email
Not only was the time way to long without him but it felt like anything that could go wrong did.  Usually we have some sort of appliance emergency while he is gone (the washing machine, the car, the dishwasher, yes, the toilet) but we had none of that this time which was a blessing.  What we had this time was Shingles and not the kind that are on the roof.
Apparently anyone who has ever had Chicken Pox also has a little virus that waits dormant until just the right combination of physical factors is in place to jump out and knock you down.  I wouldn't wish shingles on anyone.  It was miserable.  Between the stresses of this last year and not sleeping well with John gone my physical factors were just right, or just wrong as the case may be.  Mom and the kids took great care of me as I tried to function through the pain but ended up being completely loopy from the medications.  (I didn't think I was very loopy but more stories keep coming out.  I think the stories have grown over time but those around me contradict that theory!)  I also have really great friends who took my children, ran errands for me and brought meals and took over activities and programs for the Young Women (YW in Excellence for instance).  These are the same great friends who listened and helped through all the medical appointments for Brook, helped me with girls camp, put up all the decorations for Robyn's wedding reception and in general show their love for me and my family.  I've been blessed with wonderful women in my life.
Just when I thought it couldn't get any worse, it did.  Mom ended up in the hospital.  At first she just thought she had the flu but it was a bowel obstruction that kept her hospitalized for a couple of days.
Poor John.
  He was too far away to do anything for us.  I tried not to complain and told him not to worry, we were fine.  He just laughed and said, "No, You're not fine." and laughed some more, but then he would let out a sigh that was full of frustration.  I knew he just wanted to be here to take care of his family and not in a hotel room on the other side of the world.  I love that man and I am happy he is home.

Sunday, January 15, 2012

Breast Cancer Awareness

October is breast cancer awareness month.  This year it has been especially meaningful to our family due to a beloved aunt who is struggling with this disease.  We have missed her at family gatherings and think of her often. It is heart warming to hear the children praying for her and her husband to "find something she can eat without getting sick."  It has been a beautiful reminder to me to ask God for the simple things.  I hope I can remember their wisdom.

Hailey donated her hair to Locks of Love.

Sierra participated with the other high school girls in a powder-puff football game to raise money for breast cancer research.


Fall sports

Cross Country
 Here is Hailey (far left) with a few of her friends from the ward who attend other schools.  I am glad they don't let the rivalry come between them.
This is a picture of some of the girls from her school.  They are holding her up so their heads would be even.  The girl on the right is as tall as me!  (they are all 4th graders!)

She didn't place where she wanted to but it looks like she still had a great time!

Cole had fun playing football again this year.  This is his favorite sport and the coaches had them moving around and playing different positions.  Many of the 7th grade boys are very big and Cole is...well, Cole is not but he doesn't let that stop him.  He was the smallest boy on his team but held his own out on the field.  He knows he will probably always be on the small side (at least through high school)  so he makes up for it with his speed.  (He'll be smaller for a while if he is anything like his dad.  John was 117 pounds when he graduated from high school and didn't really grow much until he was on his mission.  He even grew some after we were married!)

Oregon Coast Lost Photos

I am sad and disappointed.  I cannot find the photos from our trip to the Oregon Coast following the wedding.  I have spent A LOT of time on the computers trying to find them and didn't want to blog about anything because it would be out of chronological order.  I was recently at a family history class for RS where a woman said, "Don't get bogged down by the chronology.  It will only drag you down!"  So, I am taking her advice and moving on.

 Brett's family held an open house in Robyn and Brett's honor.  We drove to Oregon and stayed at the Shilo Inn in Seaside.  I had never been to this part of the coast before and it was better than I thought it would be.  There was a big storm the day we arrived and the sand was blowing sideways!  Seriously.  Some of the pictures were from the next morning and the sand with "wind carvings" in it.  The surf was huge and so loud that my ears hurt by the end of the day.  We could see the Lewis and Clark memorial from our hotel window.  It is a beautiful memorial for the spot where they finally found the ocean.  We walked the boardwalk and visited the aquarium where we got to feed the seals and touch the animals in a tide pool exhibit.  There were kite shops and lots of tourist traps.  I was a little freaked out about the tsunami evacuation routes.  The signs were everywhere and my experience with emergency management made me feel a uneasy!  Brook decided that Seaside was where she wanted to live.
We also saw Cannon Beach (where Goonies rock is) and bought a couple of kites there to fly on the beach.  It was a lot of fun and we had a lot of laughs.  The tide was fascinating to me.  It almost got us a couple of times but thanks to John's amazing ninja skills we were able to save our shoes!
We finished that day in Portland with Robyn and the other Lees.  Deanne and Dave (Brett's parents) and all his siblings are very friendly and welcoming. They have taken her in with open arms and hearts.  Robyn is a lucky to girl to have married into such a loving family. .