Saturday, December 21, 2013


We have been covered by the love of God's people in an overwhelming way this Christmas.  When things like this happen in our family, my world gets real small.  All I can do is focus on my kids and every ounce of my energy and time is spent on them...that was no different this time with Sophie Kate's hospitalization and subsequent recovery from home.  It has been our family, friends, church and community that has come along beside us and taken care of everything else.  And I literally mean everything else, from laundry to grocery shopping to even Christmas shopping and then there have been folks who have come to stay with Sophie Kate so that I can get out and folks who have brought us dinner, kept the boys, cleaned the house and the list goes on and on.  We have felt such an outpouring.  

I have been told by several people that we are "covered in prayer."  I know without a doubt that we are because I can feel it, I truly can. There is a lightening of the burden, you don't feel the weight of it so intensely because it is shared among so many.  I don't mean that they feel what we feel but that by interceding on our behalf we are strengthened and supported in ways we can't even put into words.  How else can you explain being able to function on 4 hours of sleep over 2 nights?  I specifically asked some to pray that any sleep we were able to get would be deep, restful and healing to us because I knew we would not be getting much of it staying in the ICU.  God touches every aspect of our lives to prepare us for our journey.  He sets our path before us and determines our steps and then strengthens us by His mighty power to accomplish it.  It is nothing that we could possibly ever do on our own, the task is far too difficult and the pain is too much to bear alone.  God is meeting all our needs even in difficulty.  As much as I would love a miraculous healing for our girl, I don't need a miracle to know that God loves me and my family...He shows me in so many ways and one of those is through His people who love us. 

Christmas will be a bit different for us this year.  Our girl is still recovering so there is no travel in our Christmas plans this year.  We are so grateful to be home and to be seeing a few smiles from her and to know that she is getting stronger each day.  There will still be meds and breathing treatments on Christmas day and I will be glad to do them from the comfort of our home.  In between all the machines and cords she has monitoring her we will make room for her presents and I know her brothers will be more than happy to help her open them.  Even more important than any of that stuff we will honor our King that came in the most humble of ways to live among us and to die for us, rising three days later to conquer sin and death once and for all...that is where our hope lies and where our hearts long to spend eternity.  

My gift this Christmas will be waking up with these 5 people I love so dearly.  A breathing tube just 2 short weeks ago threw a lot of things in perspective for me, just seeing her beautiful face each morning free from that tube and the struggle that was all over her face is the sweetest gift of all. There are still blessings to be found in hard times.  We are blessed beyond what we deserve.

Luke 2:10-11 "And the angel said unto them, "Fear not, for behold, I bring you good tidings of great joy, which shall be to all people.  For unto is born this day in the city of David, a Savior which is Christ the Lord."

Merry Christmas friends.

Monday, December 16, 2013

Two Weeks

"A dream is a wish your heart makes when your fast asleep."  I wonder what kinds of things fill our sweet girl's dreams.  When we were at Disney, Sophie Kate's fairy godmother told her they would have tea parties together in their dreams.

I hope dreams of our time at Disney fill my girl's healing sleep each night.  Those 7 days we had at the "happiest place on earth" have grown so special in my memory as we have endured the last two weeks.  Her health there was such a blessing.

Today marks two solid weeks that we have waged battle against metapneumovirus.  Four days on a ventilator is four too many and even though I understand it's purpose as a nurse for my patient, it was devastating to see her that way as her mother.  I know that place by her bedside so well...there are so many emotions there and such a feeling of helplessness.  We have been at her bedside in the NICU, through multiple inpatient stays at Children's Hospital, on our knees beside her bed at home and now in the so difficult.

Last Tuesday Sophie Kate was taken off the ventilator.  She did so good, she is so strong.  She looked so relieved to finally have that breathing tube out.  Her numbers looked good and her breathing was calm and even.  She was off to a great start.  The breathing tube had served its purpose, she was rested and her lungs had been given some time to rid themselves of that awful virus and to heal.

There were no sweeter words I could hear than when the doctor came in Wednesday morning and said, "You are going to be in that very small group of people that have been discharged straight home from the PICU."  Really? Who gets to do that?  That feeling was almost as good as the morning they took her breathing tube out.  Our girl is so strong, she amazes me.

Upon discharge, Sophie Kate's O2 saturation was the best it has been in years, like 99-100%.  By the time we got home and I got her inside and hooked up to all her equipment, her O2 sat was 88%.  I couldn't believe it, it couldn't be right...but it was and that started 3 days of continued struggles and phone calls from doctors.  

Sophie Kate has atelactasis which is a big long word that means there are pockets/areas of her lungs that are not inflating properly, not getting proper blood supply and therefore not perfusing O2 well or even at all.  It showed up on the X-ray that was taken after her breathing tube was removed.  It was not a surprise to the doctors after being on a ventilator for 4 days and having metapneumovirus. This, the doctors say, is where her recovery begins.  The virus has done its worst work and our girl is still fighting.  

Sophie Kate did so well coming off the ventilator that I was convinced we were on the upswing.  Coming home and watching her struggle has been discouraging.  She can't sit up for any length of time or lay flat on her back without her O2 sats dropping into the 80's (normal is 95-100, but 93-100 for SK).  She spends most of her time laying on one side or the other and even then at times the best we can get are low 90's.  

We are home though and that is no small thing.  Here is where we can heal...all of us all together.  Sunday afternoon was the best my girl has felt in 2 weeks.  I have been looking for that smile of hers every morning for 2 weeks and Sunday afternoon I finally saw it.    Hours after seeing her smile her numbers were down again, but she smiled yesterday and she sat up yesterday longer than she has any other day.  Recovery continues here every minute, every hour and every day. 

We are carried by your prayers and we ask that you continue to pray as our girl continues to heal.  I know full well that prayers have been going up for us when we were unable to even speak through our tears.  We are supported in such a neat way by our family, friends, church and community.  God's people are about meeting needs and you are meeting our needs both physically and emotionally.  Saying "thank you" is not near enough, your kindness will not be soon forgotten.  We are comforted by you.  

Sophie Kate is in the hands of her Creator, the Great Physician.  She has been His from the beginning and her story is still being written to bring glory to God.  We lean into Him and pour our hearts out to Him.  In the shadow of His wing we find protection and healing.  He is in the hurt and He is in the rejoicing, we find Him in both places and we have a relationship with Him there.  Our pain, her pain is not vain...God work through us so that others see You and only You.   

Romans 8:18 "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

Monday, December 9, 2013

How we got here

I'm not sure how to even put into words what has happened with our girl over the past few days.  So, I will do what I do best and just stick to the facts.  I can do medical, but as I sit here by her bedside wedged in between her and the ventilator I feel exhausted and overwhelmed.  

Sophie Kate started getting sick on Monday of last week. In classic SK form she slept most of the morning and then spiked a fever of 102.9.  We went to the doctor and got her usual treatment for when we go in for stuff like this...a Rocephin shot and then home on antibiotics.  Usually I have my smiley girl back by the next morning, not this time.  After talking to our Pediatrician, we went in to see SK's pulmonologist on Thursday afternoon.  After telling him of our days with low O2 sats, in spite of suctioning and breathing treatments, lethargy, fever and a lack of response to antibiotics, he felt like we needed to be admitted.

We found out Friday morning that SK has metapneumovirus.  It is a fierce respiratory virus.  The doctor told us it would get worse before it would get better...unfortunately he was right.  On Thursday we were admitted to the ICU, early Friday afternoon we were transferred to the Special Care Unit, which is a step down unit from ICU.  Our stay in Special Care was short lived. SK was feverish, breathing very rapidly and working really hard to take those breaths.  Her room suddenly looked like a scene from a TV medical drama.  There were 25 or so people in and out of the room ranging from doctors, to nurses, to respiratory therapists all gowned, gloved and masked as if they were in some kind of contamination zone.  

There was lots of commotion with folks doing their job...a well oiled machine underneath the chaos.  There was talk about a breathing tube and that's the point where I knew things really were going to get worse, um awful, no unbelievably bad before it got any better.  The doctors opted to put her on bipap first with the consensus being in the room that it wouldn't last and that within minutes of being put on bipap she would have to be intubated.  Well, they were kind of right on that one.  She actually stabilized for a few hours on bipap (which is kind of like cpap if you're familiar with that).  Her rate of respirations decreased, her breathing became more even, her color was good and she wasn't working so hard to breathe.  

During the time she was on bipap we were moved back to the ICU.  After about an hour back in the ICU, she started doing all those same things again that she had been doing back in Special Care.  The doctor came in and told us she felt like we were all (meaning the medical team) just putting off the inevitable and that what our girl really needed was to be intubated.  As painful as that was, we knew she needed it too.  

Somewhere around 10:00 on Friday night when we are usually home with our group popping popcorn and watching a movie we found ourselves in the ICU of Children's Hospital utterly helpless as our daughter was placed on a ventilator.  I'm pretty sure my feet would have been propped up in front of the fire and Frank would have been curled up in my lap.  Instead, I was the most devastated I had been in 6 years.  

When we saw her after the tube had been placed she was completely sedated.  The silence was sickening.  She couldn't have made a sound if she had wanted to, it was heart wrenching.  The room completely cleared out and Chad and I were left once again at the bedside of this girl in stunned silence. Her vital signs which had been setting off alarms almost continuously for some time were now nice and neat and within normal limits.  It was a weird almost too perfect feeling because we knew that a machine was doing all the work for our girl, but she was calm and was no longer struggling to take each breath. 

The purpose of the breathing tube for Sophie Kate is so that she can rest and her lungs can heal and so that this dang virus can get the heck out and leave my baby alone.  There has not been much change in her since she was placed on the ventilator and that was to be expected...she is supposed to rest. We have been told that this will be a long road for her and us.  I am having to wrap my mind around a prolonged inpatient stay.  There is no talk of her coming off the vent right now and there is no talk of her coming home any time soon.  Here, as in the NICU right after she was born, they keep us focused on just one day at a time. Let's manage this day...these next few hours they say and I want to look at about 16 days from now and just cry.

How do we do this? How do we manage life at the hospital and life at home?  How can we be here for Sophie and at the same time be there for Cooper, Jacob and Grey?  How can I do all of this and fall completely apart?  Because that's what I want to do I want to fall completely apart. There is no extreme I haven't reached, I am exhausted mentally and physically. I can go from asleep to awake in .5 seconds and from "handling this" to ugly crying in less time than that.  Me and my nursing skills are stretched thin, I am out of my league here.  I feel split in two, I want to be at the hospital and I want to be home taking care of my boys.  I want to be doing fun Christmas stuff with them and maybe even managing to put up some outside decorations.  I also want to be here taking care of her and being involved in the discussions the doctors are having about her care.  

Laying in a hospital bed just makes you look sick and she does and she has every right to because she is.  Her brothers came to see her yesterday and it was good.  Grey misses her so much and it was good for Cooper and Jacob to come up here and see what's really going on.  I have a feeling it may have been worse in their minds than it actually was once they came up here and laid eyes on her. It was emotional at times but it was good.  She got to hear their voices and I imagine she was thinking it was pretty good for us all to be together again.  
This about tore my heart out.  They miss each other so much.  I just stood back and let him have his time with her.  
While we sit at her bedside in our grief, Our God is not wringing His hands in despair wondering what will happen.  She has been His from the beginning.

Psalm 142:1-3 "I cry aloud to the Lord; I lift up my voice to the Lord for mercy.  I pour out before Him my complaint; before Him I tell my trouble.  When my spirit grows faint within me, it is You who watch over my way..." 

Thursday, December 5, 2013

More Animal Kingdom

We're continuing on with our day at Animal Kingdom.  I realize that it's going to be hard to top that picture of Sophie Kate and her daddy soaking wet and smiling coming off the river rapids ride, but I'm gonna try.  While the rest of our group was riding Expedition Everest, SK, my mom and I decided to seek out a spot for the Jingle Jungle parade.  After some walking and looking around we found a spot, it wasn't great but we found something.  A few minutes later we were spotted by a Disney cast member that motioned for us to follow them.  They found us a viewing spot that they said would be much better than the one we had.  It was actually an area that had been blocked off, it had a big ole "X" on the spot where we were standing but they said "Here ya go, this spot is just for y'all."

I don't know what kind of magic that spot held, but it was Disney after all.  Every single character that came by came over to see SK.

All I could get from my vantage point is SK's red and white polka dot pants, but that's her.  SK was front and center, I was standing behind her.

Even the characters not on foot, pointed and waved.  I have never seen anything like it, it was so neat!

I noticed the people next to us watching as each character walked right by them and up to our girl.  I'm sure they were thinking, "Who is this girl?"  Ha, they have no idea what a treasure she is.  

I seriously felt like I was with a VIP.  She received sooo much attention, it was so fun.
 Meanwhile elsewhere around Animal Kingdom this is what was going on...

This is why I love going to Disney this time of you see how empty the ride is?  These kids rode over and over. I quit counting after about 8 times.

Here they are...the hardcore riders, they conquered Expedition Everest.

It just keeps getting better and better.  Up next...a date with a Princess.

Monday, December 2, 2013

Animal Kingdom

We had a wonderful Thanksgiving break.  After so many days off, it's tough getting up on a cloudy rainy Monday morning.  Okay, back to our Disney trip...that should make for a brighter morning.  After our breakfast at Chef Mickey's our "party of 13" headed to Animal Kingdom.
 SK and Pocahontas

It cracks me up that Pooh and Tigger are in their Christmas attire while my group is in shorts and t-shirts.  
It was weird hearing Christmas music as we were sweating and walking around in 80 degree weather.


There is a story behind the next two pictures, the first one is Sophie Kate before she rode the river rapids ride...
and the second one is after she rode the river rapids ride. The thing is, you never know how wet you will be after riding.  Some people get off barely wet at all and some get off soaked you just never know.  They had a special seat just for her and since it was in the mid 80's that day we decided to do it.  Let me just tell y'all that girl and her daddy got soaked and the best part about it was that she had a huge grin on her face the entire time.
This was one of the most special moments of the day.  It was the Disney folks that told us she was able to go on the ride.  We had every intention of one of us sitting out with so glad we didn't!

Well, our Animal Kingdom adventure is far from over, but I don't want to drone on and on with super long posts.  I will wrap up our Animal Kingdom day in the next post. There is so much more to come, Disney really does treat our girl like a Princess and I don't want to leave out a single thing.  Stay tuned.

Wednesday, November 27, 2013

This Thanksgiving

This Thanksgiving I will get up and do morning meds like I do every morning.  I will walk into her room and be greeted by that smile that lights up my world.  We will prepare her food, we will give her breathing treatments and we will place her on oxygen just like we do every single day.  I will sit by her side like I do every morning.  A bit later the boys will get up and we will see that smile over and over again as she sees and hears the house waking up.

Things will be very much the same in our world even though it's Thanksgiving and that's okay.  I want gratitude to be a way of life for us.  I want to be thankful for what I have while I have it.  I want to be thankful for this house that's constantly cluttered and in need of a good cleaning because that means it's full and it's loud and everyone is home.  I don't want to take a single moment with these five people for granted.
1 Chronicles 29:12-13 " Your hands are strength and power to exalt and give strength to all.  Now our God we give you thanks and praise Your glorious name."

Monday, November 25, 2013

Party of 13

Our next day at Disney found us at Chef Mickey's for breakfast bright and of 13 please.
I can assure you this group put a hurtin' on that buffet.  The bacon never saw it coming.
 Showing my girl the love...

We celebrated my dad's birthday at Chef Mickey's.  This is what he wanted to do for his birthday.  I can't tell you how much I loved this, not many PawPaw's want to experience Disney with their grandchildren, but this one did!  Please note Cooper in the background of this picture,  I would put money down that he's got a plate of bacon in hand, ha ha.

Just us with the characters...

PawPaw with 3 of the grandsons, don't know where Grey had run off to.

Here they all are MiMi and PawPaw, with Minnie and all 7 of their grandchildren...we finally wrangled them all into one picture.

One of my favorites...
I run a tight ship and everyone played along and somehow we got all 13 of us up and out and at Chef Mickey's for a 7:30am breakfast was so worth it.  I was thrilled to be able to do this with my whole family, such a fun morning.