Saturday, December 1, 2012

NICU donations

I'm still amazed at the number of people who are following my journals.  Thank you for so many caring notes today as we move past Sarah's due date.  It was an emotional day.

I've gotten some questions about how to donate towards the NICU dress fund so here are the details:

Donations can be made to “William Beaumont Hospital NICU” in memory of Sarah Shaw.  Before she passed away, her nurses gave her a dress so we could dress her once and take some pictures as a family to help us remember her.  We would like to provide dresses in Sarah’s memory for other families who have to say goodbye to their little girls-this is a fund we started to support families in their grief. Checks or micro-preemie dresses (button or closures in the back, please) may be sent to William Beaumont Hospital 3601 W. Thirteen Mile Rd. Royal Oak, MI 48073-6769  Attn: Mara Sipols) Please put "Sarah Shaw" in the memo of checks so your donation goes to the right fund.  Thank you!

I will carry you




"I Will Carry You"-Selah

http://www.youtube.com/watch?v=pxZhEcTzn6Q

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

[Chorus]
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says ...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

[Chorus]

Due Date

Dear Sarah

Today is our due date.  When I was pregnant with you and your brothers, the time together was filled with such excitement: waiting for the first wiggles, wondering if you were a boy or a girl and of course tracking the  time on the calendar and counting down the weeks and days until we could meet you.  Its a very special time that I fully cherished.  Obviously our time together is over, but with the days passing when you should have still been in me, I've been acutely aware of what I was missing.  So, I'm kind of relieved that this date is passing so maybe the pain won't feel as sharp.



We won't forget you but we're still figuring out ways to remember you and honor your life.  Last week I hung up your pictures around the house.  Mostly, we are just working through the grief and choosing "life" for our family.  The sadness we felt, and feel, in having said goodbye could have destroyed us but just like we chose life for you and fought for your life, your Daddy and I are choosing life for our family- we are choosing to cling to God and to each other and choosing each day to pour ourselves into your brothers.  We're focusing on the simple things and what really matters, our relationships and time with each other.  We want life abundantly.  We also want to bring that same life into difficult situations for others-we continue to raise money for dresses for the NICU.  I didn't think we'd be buying you a grave marker for Christmas--of course I had other, more joyful, ideas.  But we have given gifts in your name to a baby who was in need this Christmas and I thought of you.   Hopefully we'll figure out more ways as time goes by to honor you.

Your brothers are still thinking of you also.  The other day Zach asked, out of the blue, if we could get flowers for your "special spot" in the cemetery.  Gabe also out of the blue was thinking about what it would be like if you were with us.

There were times when I didn't feel or see God's presence or peace that everyone was wishing and praying for us.  Honestly I didn't feel much of anything and am just starting to "feel" again.  But after awhile I realized that all the love others were giving us through random gifts left on our porch, cards, hugs and words of encouragement were all God's love in action.  All those people were being God's hands in our lives.  Through them, I have been able to see and feel God's presence and peace.

I have no idea what you know in heaven about us, but we know you are surrounded by Love as you are in God's presence.  Know that we love you too.
Love,
Mommy

Wednesday, October 10, 2012

grieving with kids

One of the hardest parts of this grieving process is watching my two and four year olds grieve and miss their sister.  My heart hurts but watching their pain is almost as bad as having said goodbye to Sarah.

Gabe is calming down on his angry outbursts but is talking a lot more.  He doesn't want to see a friend because she has a baby and "I don't want her to have a baby. Sarah should be the only baby."  The other week he pulled things off the shelf at Target for a girl and said, "these will be great for our sister!"  When I explained that Sarah isn't with us, he crumbled, crying, and asked, "Is that the last baby to be in your tummy?"  Today he said that he wanted to go to heaven so he was going to hurt himself badly so he could go see Sarah right away.  Knowing that he probably doesn't get the finality of dying, I explained that he wouldn't be able to come back, we'd miss him, and that God decides when we go.  He calmly said that it didn't matter and he just wanted to go.

Zach, at two years old, isn't as verbal but he is still grieving.  During random moments of the day he often curls up in my lap or turns to me for a hug and says, "I miss Sarah" or "I hold Sarah again someday"

I never thought I would be having these kind of conversations with my preschoolers.  And my heart just hurts, hurts, hurts that I have to.   And this is when I pray "Oh God!  Please redeem this horrible time for all of us.  Somehow take this and use it to draw us to you.  Use it to draw others to you."

Tuesday, October 2, 2012

Grieving



Grieving is a funny thing.  Life doesn't stop even though I feel at times like my world has ended along with so many dreams.  I still have boys who need to be cared for, taken to school and played with.  And my husband has work.  And there's a house to clean.  And groceries to shop for.  And on and on.  Life continues on almost as if nothing has happened.  Problem is, something did happen and I've been changed.

Mixed into such deep sadness and feelings of emptiness, we also have "normal" moments of laughter, memory building, good talks and calm hearts and minds.  But emotions are funny things...almost like creatures who sneak up and surprise you.  They have their own personalities too-some stop by quickly and let you know gently and easily how you're feeling and others want to be the center of attention and have complete control for the day.  Some slip in quietly to sit and talk reflectively and others rush in like an uninvited guest yelling at the top of her lungs.

And we deal with them in different ways too.  Pat is working even harder to provide for those of us with him and I've been organizing our house almost obsessively (although I must admit it felt good to get the piles of paperwork under control and filed for the first time in our married life!).  All trying to give ourselves a sense of order in the midst of the chaos of our emotions.

We're trying to embrace our emotions and all their personalities and let them help us to heal and teach us about ourselves.  As we do, please understand the sudden tears or the desire to talk about Sarah...or not.  And also, if you need your home organized, please call me...I'm out of projects... =)




.

Heaven

Heaven is more real to me now.  Don't get me wrong, I've always believed that there is a place where we'll spend eternity with God but it was more foreign, like head knowledge or simply something down the road that I didn't think about often because, honestly, for the most part my life here is pretty great. But now I've held my daughter and watched as she slipped from us and mysteriously went to this place.  And now I think of heaven daily:  What is it like?  The boys ask about heaven often and we've had many discussions...as much as you can with two and four year olds!  They wonder if Sarah is eating dinner, if she's running and playing games with Jesus, singing, or sleeping.  Gabe and Zach pray to Jesus to ask him to tell Sarah we miss and love her. Zach wants to drive his orange car to heaven to say hello to Baby Sarah.  I wonder what Sarah knows.  I know she is with Jesus and there are no tears there but, as we miss her, I wonder if she misses or even knows about us.  And what does she know or remember about her short time with us?  Does she know how much we love her or that we really did everything we could to try to keep her? 

While in such pain now, at times the grief feels like a physical burden, I am simultaneously repulsed by our sinful world where such tragedies happen and also sense glimpses of heaven as I feel Gods presence with me, tastes of what it will be like to be completely in his presence in heaven someday and what I know Sarah is experiencing now.  Our pastor taught recently about the story in the Bible where Jesus wept because his friend Lazarus died.  Pastor Paul spoke of how Jesus cares (he grieves with us) and also will bring life from death and sadness.  In the case of Lazarus he literally brought life as he raised Lazarus back from the dead.  In our case...I don't fully know yet but I know that over time we will use this experience to grow closer to God, each other and help others in pain.  Life from death and sadness.   

I've clearly become even more addicted to Selah's music over these past weeks and I'd like to share yet another song.  "On the Mountain" reminds me that life is a journey, perhaps feeling difficult as if climbing a mountain.  I get glimpses of heaven now but its just past my grasp.  I can imagine bits of it, but lets face it...its behind our human comprehension that a place exists that's outside time.  As I Corinthians 13:12 says: "For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known."  Just like a mountain rising up out of sight into the clouds, I can only see the part of my path that is right in front of me and I have to keep walking, reaching, longing for what I can't see. 

Please listen to this song and remember that this life is a journey filled with amazing moments as well as obstacles.  I'm walking this journey with my friend and Savior Jesus as closely as I can in this life, knowing that someday I will see Him face to face.  If you're not already on this journey with Jesus, will you join me?


http://www.youtube.com/watch?v=N3P34dYi3UQ


On The Mountain 


I’ve been climbing my whole life
And I’m only at the bottom of the mountain,
At the bottom of the mountain
Rising up from my feet in the daylight
Rising up into the clouds and out of my sight
Is the height of that mountain

Well my hands cannot reach it
And my mind can’t comprehend it
But my soul is gonna get there one day
No, my hands cannot reach it
And my mind can’t comprehend it
But my soul is gonna get there one day

Lord, these shoes are gonna need some help
So we can make it to the top of the mountain
To the top of your mountain
Many feet have gone before us
With a habit of faith and courage
They’ll meet us at the road’s end

REPEAT CHORUS

BRIDGE:
Yes, yes, I think I will
Oh yes, I know we will
Yes, yes, I know we will
Oh yeah, I know we…

I’ve been climbing my whole life
And I’m only at the bottom of the mountain
At the bottom of the mountain
All along this road when it feels so far to the top
You say, “Just hold on to the mountain.”

REPEAT CHORUS (X2)

TAG:
Well my soul (my soul) is gonna get there one day


Sunday, September 9, 2012

visit to your grave

Sarah,
 I wanted to let you know that the boys and I visited your grave the other day.  They had been  talking about you and I thought it might be good to sit by your grave ("Sarah's spot" is what we call it) and spend a few moments remembering  you.  I explained to the boys again about dying and going to heaven and told some "silly Sarah stories"  to them.  That day Zach had decided he wanted to try underwear again and before we had come to see you we had been out running errands.  He had gone to the potty once and had an accident also so I thought he was empty enough for us to stop at your spot on the way home. And I reminded him that I had a potty in the car in case it was needed.  As we were talking about you all of a sudden Zach let loose.  He said, "Mommy, Me pee on grass!!"  Yep, he watered the grass right next to your spot.  We laughed and laughed and I thought it was a neat picture of what life would have been like all together...quickly going from sad moments to stories to teaching to messes to silly things
.





I will carry you

Dear Sarah,
Today I heard this song by Selah (http://www.youtube.com/watch?v=pxZhEcTzn6Q) It made me think of you.  I thought I'd carry you in me for nine months waiting to carry you in my arms.  Its just different now and I feel like this is the longest gestation!  I carried you in me, briefly met you, and will now carry you in my heart, waiting to wrap you in my arms someday in heaven.  I definitely wouldn't have chosen this path, but I also would rather have met you and get to hold you in my heart for now than to have never met you at all.  I'm still sad, but I still live with the "pregnancy excitement" of getting to know you in the future.  I am grateful that Jesus is holding you now and doing all the things with you that I wanted to do.
I love you,
Mommy

I Will Carry You (Audrey's Song) by Selah

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

[Chorus]
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says ...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

Monday, September 3, 2012

how we're doing

So many of you have been asking how we're doing and we are so grateful for everyone reaching out.  Grieving is new to me and I'm sure it feels different for everyone, but for me it feels very lonely and I'm thankful for all who have checking in with us.

It has been a week since Sarah's burial and memorial service and 11 days since she died.
It took a couple days for me to stop wanting to yell to the world around me about what had happened.  When I think about it, I feel horrified...no parent should have to bury their child.  How can a life filled with dreams and excitement for a new baby be changed into a nightmare so quickly?  I wanted others to feel my horror, to stop going about their normal activities of shopping or taking a walk around the neighborhood.  How could they continue with such mundane things?  (Just so you don't think I'm crazy, I never did yell or stop people...=)  )

After the burial and service our adrenaline dropped off.  We are both exhausted and even getting through normal activities like caring for the boys and catching up on work has required effort.  I was able to nap a lot this weekend and that has helped take away some of the "rawness" of my emotions.  We are playing with the boys, getting ready for preschool to start and starting to get back into household routines.  I looked at my calendar last week and saw that Friday was family game night...I hadn't even remembered what day it was.  So we did it even though Pat and I didn't feel like doing anything except sleeping.  We figure that just getting back into things, whether we feel like it or not, is part of the process.

We're slowly starting to sleep again.  At least the stretches that we do sleep are getting a bit longer.  For a number of days, we both (and then later the kids) were waking up about 3am, the time that we got that last phone call to get to the hospital immediately.  I'm still having bad dreams: holding babies, knowing they aren't mine and searching for Sarah, not finding her; watching myself start the events of a month ago and trying to tell my past-self what will happen but she won't hear me.

All around us are reminders of dreams that are gone.  Today we went into the basement playroom to play for the first time since all this started.  All the toys and baby gear are lined up waiting to be used (and some of it out already being "tested" by big brothers).  What do we do with it?  We also have a large bag of nursery items we got the day before I went into the hospital five weeks ago.  Sheets, blankets, pacifiers...do we return them or donate them?  The boys are now in the same room because we were getting ready for Sarah. Every time I'm in there, its another reminder that things are not going to be as planned.

The boys are struggling with missing Sarah but also with Pat and me being back in our roles as parents, because we were basically gone for the last month.  They are acting out, fighting and showing signs of anger with us.  They also have had some trouble with sleeping but seem to be getting better.

How do we move on?  For now, we are just trying to go back to our regular routine that we had before but also trying to incorporate Sarah's life into our daily life.  We still sing "thank you Jesus for Sarah" along with the boy's names at bedtime.  We are still trying to raise money to donate dresses to other NICU girls in Sarah's memory.  We know that in the future we will raise money for research of prematurity and down the road I would like to volunteer through the hospital to help other families who have said goodbye to their child.

We are incredibly grateful for all who have, and continue to be, on this difficult journey with us: parents who helped take care of our boys, moms who continue to provide meals for us, those who have sent restaurant  and grocery gift cards, those who have left flowers and other thoughtful gifts on our porch, friends who have encouraged us, former NICU moms who have contacted us and loved us, the many people at church who continue to give us hugs whenever we're there, the nurses and doctors who cared for Sarah (and us), and those who helped us plan and who led the different aspects of Sarah's memorial service.  We are grateful for our pastor who has walked the entire last five weeks with us, meeting us at the hospital at 3am, staying with us through the last day of saying goodbye to our girl, leading services for Sarah at her grave and service, all the time encouraging us and reading scripture to us.  We are grateful to God for giving us five months of knowing about our girl and the chance to sing, talk and pray with her.  We are grateful for nine days to have known her, touched her and held her.  We are grateful to God for his constant love, for the hope he gives us that we'll see her again, that we will heal and that beauty will come from our pain.

Tuesday, August 28, 2012

Letters from Dad & Mom

We have a tradition in our family that each Christmas our kids get letters from us in their stockings.  We decided to write letters to Sarah for her memorial service to keep in line with the tradition.

My dear Sarah,
In the years to come, I will be sharing your story with many people:

It began with a surprise.  We weren’t supposed to able to have any more kids and yet here you were - a tiny gift in a wonderful package.  Both me and your mom were so excited to meet you!  You gave your mom some trouble – kicking, swimming, and diving around – but I don’t think she really minded.  I was excited to have a little girl in the house, and was dreaming of all of the things I could build for you and stories we’d read together. Your brothers adored you, especially Gabe.  He loved singing songs and drawing pictures for you.  Gabe had quizzed all of the girls in his class and based on his research informed me that pink was the best color for you.

Things changed with a single phone call when I was on a walk with these brothers who love you so much. Your mom fought hard for two weeks to keep you inside.  Yet, you kept coming.  When you were born you cried, something unusual a girl of your age.  We felt that things weren’t good, but you were a fighter and would marshal on.

During this time, I started making a list of stories to share at your wedding, fulfilling my duties as dad to embarrass you.  Including how you’d kick mommy in the wrong spots or giving us a false alarm on day two which turned out to be shadow on the x-ray.  You were incredibly feisty; vigorously kicking me if I didn’t touch you just right.  But you would settle in when I’d cup your head with my hand or squeeze my finger with your hand.  We would read stories to you, pray over you, and sing.  One time, you looked like you were trying to turn your head and open your eyes while I sang to you.   I felt like we had a rough road, but we would walk it together.
However, things did not go well and we have to part ways for now.  I wish that I had the strength to make you better, but I don’t. I could not be the hero who saved the day.  Seeing the limits of my abilities as father has been heartbreaking.

The last thing I remember before you passed was seeing you smile. You looked so happy to be wrapped in your mom’s arms as we sang softly to you, sang you softly to sleep.   
I did not expect this twist in your story.  I did not expect to be writing this letter to you.  I wanted to see you grow up to be a princess or a tomboy, a jock or a nerd.  I know that you would have been stubborn and smart, and never afraid to speak your mind.  I wanted to see your eyes – would they be hazel like mine, green like your mother’s, or blue like Gabe’s?  I wanted to take you to the movies, go on hiking trips, chase the wrong boys away, and give you away on your wedding day.  Most of all I wanted you to know and love God.  And with great reluctance, I have to turn the last page of this chapter.

However, this is not the end of the story.  I know that I will see you running and laughing in the streets of Heaven.  I will see the color of your eyes and know the thoughts of your heart.  I will throw my arms around you and tell you how much I love you.

I look forward to seeing you again.





Dearest Sarah,
We’ve been excited from the moment we found out you were in me.  You were a surprise and we couldn’t stop jumping up and down and laughing with excitement.  I felt you moving early on when you were only nine weeks along and I enjoyed every squirmy wiggle and later on your kicks.  You were very, very active and stubborn, always moving away from monitors and later expressing dislike of certain positions or when we touched your feet.  So many nurses, both before and after you were born, called you “feisty”--you would have fit in well with your brothers.  

We started preparing for you right away and I was dreaming and looking forward to being your mom and doing so many things with you: snuggling you close, dancing around the house, seeing you giggle with your brothers,  watching you splash in the tub, taking you to the beach, teaching you, encouraging you to try new things, shopping together, going out to eat and talk, teaching you about true love and how to look for a guy as wonderful as your Daddy, rejoicing with you at celebrations like birthdays, faith milestones, your wedding and births of your children.  But it wasn’t meant to be.  And the sorrow I feel is because of my dreams that are lost.  

Most importantly your dad and I wanted to introduce you to Jesus and teach you about Him.  Thank you for holding on for nine days so we could meet you, hold you, and tell you stories about your family and Jesus.  I enjoyed reading the Bible and singing songs with you especially those last few weeks in the hospital.  Holding you and singing you to sleep, knowing you would wake up in Heaven seeing Jesus, was a sad but beautiful moment for me.  We know you are with Him now and, while we miss you deeply, we know we will see you again.  Like I told you on your last day, expect a hug from us for half of eternity.  Then, could you show us the most fun spots in Heaven?  Your brothers want to go exploring with you.  

In your short life, I learned some things from you that will change how I live: I will love more deeply, enjoy the moment more, and celebrate life more.  Know that we love you and will never forget you.  

love you forever,
Mommy

A beautiful day remembering a beautiful girl

Dear Sarah,
Today we buried your body and we had a memorial service to celebrate your life and that your spirit is alive in heaven.  I think you would have enjoyed the day.  Daddy and I tried to make it a day that was filled with the kinds of family traditions and activities we would have surrounded you with: teachings about Jesus and the salvation he gave us by dying on the cross, singing songs together as a family, and family and friends around to celebrate together.

We focused the burial and the memorial service around the word "hope."  We know that this world isn't all there is thanks to the work done by Jesus on the cross and His resurrection.  Maybe  you remember hearing us tell you--because Jesus took our punishment by dying and then rose again we know that even though we die that we will be with Him for eternity in heaven.  It is that promise that gives us hope that we will see you again.  Pastor Boos spoke such a beautiful message about this hope.  We also sang some songs from our bedtime routine: we sang "Thank you Jesus" at your grave, "Jesus loves me" and we got everyone at the service to sing and dance to "Making Melodies" -the song Gabe and Zach taught you when they said goodbye on your last day.  They hope you've taught Jesus the song now.  We also sang "Great is thy Faithfulness" which is what I was singing  that long night when you were still in me while I was receiving medicine to help keep you in longer.

There were small things we did as well:  You had a vase of pink and purple flowers that were just the kind of arrangement you would have gotten from your Daddy "just because" and I picked out topiary's made from pink flowers that I had wanted to make for you for your first birthday party.  Gabe designed your cakes: pink and purple roses covering them.  He and Zach are very thoughtful and would have been amazing big brothers.

We also have asked people to consider donating towards a new fund at the hospital that will help provide dresses for other little girls in the NICU who have to say goodbye to their families, just as you were given a dress from one of your nurses.  A number of people have generously given towards that fund in your name.  Our family really values serving other people and helping them feel loved and that's something we would have taught you and helped you learn.  This was one more thing that made me smile--even though you're not physically with us, service and loving others is being done in your name.

Mostly though, we would have surrounded you with people who love and care for you.  Today despite my tears, I smiled a lot because we were so overwhelmed by the love of so many people both family and friends from near and far.  You, too, would have felt happy and secure in the love of so many.

Tomorrow we will begin to figure out our "new normal" and please know that as we do, you are a part of us that we won't ever forget.  You have touched us and we will find ways in our daily life to remember and honor you.

Love,
Mom

Friday, August 24, 2012

We have hope...

We have hope that is only found in Jesus.  We WILL see her again because Jesus took the punishment for our sins when He died on the cross.

"With Hope" by Steven Curtis Chapman

http://www.youtube.com/watch?v=JmyUgsmCzB4


This Is Not At All How
We Thought It Was Supposed To Be
We Had So Many Plans For You
We Had So Many Dreams
And Now You've Gone Away
And Left Us With The Memories Of Your Smile
And Nothing We Can Say
And Nothing We Can Do
Can Take Away The Pain
The Pain Of Losing You But
We Can Cry With Hope
We Can Say Goodbye With Hope
'Cause We Know Our Goodbye Is Not The End Oh No
And We Can Grieve With Hope
'Cause We Believe With Hope
There's A Place By God's Grace
There's A Place Where We'll See Your Face Again
We'll See Your Face Again
And Never Have I Known
Anything So Hard To Understand
And Never Have I Questioned More
The Wisdom Of God's Plan
But Through The Cloud Of Tears
I See The Father's Smile And Say Well Done
And I Imagine You
Where You Wanted Most To Be
Seeing All Your Dreams Come True
'Cause Now You're Home
And Now You're Free And
We Have This Hope As An Anchor
'Cause We Believe That Everything
God Promised Us Is True So
We Wait With Hope
And We Ache With Hope
We Hold On With Hope
We Let Go With Hope

Sarah's funeral information

Sarah passed away on Thursday, August 23 at 3:06pm. We held her for an hour, oddly the exact hour that I had held her for the first time the day before. We sang Jesus loves me as she took her last breaths. She is healed and with Jesus now. We'll miss her but know we'll see her again someday

Celebrating Sarah: Tuesday, August 28 
Please join us to celebrate Sarah's life

Memorial Service: 11am at Faith Lutheran Church in the chapel (37635 Dequindre, Troy 48083).  Cake and coffee reception will follow


In lieu of flowers, please donate to “William Beaumont Hospital NICU” in memory of Sarah Shaw.  Before she passed away, her nurses gave her a dress so we could dress her once and take some pictures as a family to help us remember her.  We would like to provide dresses in Sarah’s memory for other families who have to say goodbye to their little girls-they do not currently have a fund/supply for this. Checks or micro-preemie dresses (button or closures in the back, please) may be sent to William Beaumont Hospital 3601 W. Thirteen Mile Rd. Royal Oak, MI 48073-6769  Attn: Mara Sipols)

Tuesday, August 21, 2012

Happy one week birthday, Sarah!!

The last few days have been very difficult and Pat and I both agree that it has been the longest and most difficult week of our lives.  After Sarah's brain and lung hemorrhages on Friday the next two days when we'd arrive at the hospital or call were met with a list of new problems:

  • Blood pressure was low which could lead to more hemorrhages.  They were having trouble getting it up
  • She has metabolic acidosis-too much acid in the blood from the kidneys not functioning well
  • Her kidneys aren't working properly-she is urinating blood and the toxins in her system are extremely high
  • She has a heart valve that is staying open
Despite all the negatives, as they treated her with blood transfusions, medications, etc. she has held on.  We've been grateful for each day.  Yesterday (Monday) was the first day that we got a thumbs up when we arrived and today her nurse greeted us with another thumbs up and the words "she is one tough cookie!"  He said she has, and is, jumping through some major hurdles.  
  • Despite the kidney issues, she had been weaned down enough on the powerful respirator (called a "rescue" respirator, it gives many hundreds of breaths per minute making her shake like jelly constantly) to move onto the regular respirator.  She responded so well to the regular respirator and they have been able to begin weaning her off that as well.  It may be a few weeks but the fact that she is responding so well that they can slowly turn down settings is a very positive sign.  
  • They no longer are getting blood from her lungs when they suction her.  
  • An ultrasound today (Tuesday) showed no changes (i.e. no more bleeding) in her brain
  • Her blood pressure is up thanks to some medicine but she has been off it for today and has held good numbers
  • Her numbers that measure the toxins in her system dropped slightly meaning her kidneys are working a bit.  We hope they will continue to drop.  The dr. said that if an adults numbers were as high as Sarah's that dialysis or a transplant would be part of the discussion.  Sarah is too small for either.  
  • She was not urinating as much blood today
  • She has regained a couple ounces and her weight is now 1 lb. 9 oz.
  • She received a new IV line that is more permanent than the lines going through her belly button right now which will be removed tonight.  With those lines removed we were told that there is the possibility of holding her tomorrow!!  That makes this mom incredibly happy.  Having seen her struggling and crying (even with the tube in her mouth/throat it is clear when she is unhappy and is "crying") and just being so ill, my arms have ached to pick her up to try to comfort and hold her.  One of the worst parts of the past week was not knowing if she was going to survive and desperately wanting and needing to hold my baby.  
We are not out of the woods.  That is something we are reminded of regularly by the doctors and nurses and we remind each other too.  She is only 25 weeks gestation and still has a lot of obstacles as well as new problems that could pop up.  But we are so grateful for some positives.  

Today is Sarah's one week birthday and our Gabe who doesn't need much excuse for a party said we should have a birthday party for Sarah.  We realized what a great idea that was since 1.) it was a fight for Sarah to survive this week and 2.) we really don't know how many celebrations we will have with her.  The boys picked out a cake for us to bring to the nurses and we also had a cake at home (they wanted a pink and purple cake because Gabe has done his "research" and had asked friends-girls-at school what their favorite colors are.  Pink and purple and what girls like.). We sang happy birthday to Sarah and enjoyed some happy moments that are filled with a little bit more (cautious) hope than we had just a few days ago.  

Happy one week birthday, sweet Sarah.  We are so happy you're with us.  Keep fighting and know that we love you but most of all Jesus loves you and is always with you. 

Sunday, August 19, 2012

Ways you can help

Thank you to everyone who has been helping so far.  We've also gotten lots of emails from many asking how to help.  I wish I could answer each of you individually but my time and energy is very limited right now.

1. Meals
Not having to think about meals each day will help us to spend focused time on work (for Pat), with the boys and make getting to the hospital easier.  Even snacks of cut up fruit and veggies are helpful.  Our church has set up a meal calendar: http://carecalendar.org/logon/
120633

Calendar ID: 120633
Security Code: 9826

2. Cutting our grass
The season is winding down but if someone could help us through the next couple weeks, please email us (patheather@gmail.com).  We have a reel mower or you could use your own.  

3. Paper plates, napkins and plastic ware
I know, not very "green" but I'd like a stash of these items to cut down on time washing dishes.  

As needs arise, we will add updates. 
Thank you again...we couldn't do this without you!!

Love, 
P, H, G, Z & S

Saturday, August 18, 2012

Her story so far...

This pregnancy was a surprise.  I had started to sell baby things and had applied to go back to school.  We still wanted more children and had started to talk adoption but after a lot of discussion we decided to consult with our dr. about possibly trying fertility treatments for one more kid.  (As a side story, Gabe had been asking and praying for a sister since September.)  A couple days after the decision to contact a dr.  we discovered we had been pregnant through the whole discussion!

The pregnancy had been easier than the boys' and I was feeling great. I was being followed by a high risk dr. because of  Zach's prematurity (32 weeks), but the dr. thought that was a fluke and that we had a great chance at a full term baby. We were extremely surprised on Monday, July 30th when an ultrasound showed that I was seriously dilated.  I went into the hospital on bed rest and on August 1st had surgery to stitch close the cervix.  I went home on strict bed rest after 2 ultrasounds showed the stitch was doing its job and all was stable.  

On August 10th, at a follow-up appt. our OB discovered that I was again dilated despite the stitch.  I had 24 hours of steroids (to strengthen Sarah's lungs) and magnesium to help slow any contractions (I wasn't having any) and to help prevent bleeding in the brain for Sarah were she to be born in the next week.  I remained in the hospital on bed rest, with my feet higher than my head with the goal of reaching 28 weeks.  

Early Monday morning (August 13th), I started contracting and, just as with the boys, they came fast. I was again started on 24 hours of magnesium which slowed the contractions but I continued to have a few strong ones each hour.  On Tuesday, August 14th, at the end of the 24 hours, Pat was concerned that I was getting sick because I had chills, hadn't moved for much of the past 24 hours, was drifting in and out, and had stopped talking.  =)  Sarah also was showing some signs of distress: she hadn't been moving as much and her heart rate, while still in the normal range, had dropped from where she always had been.  They were worried about infection and felt that we should get Sarah out before she got sick and I got sick.  They broke my water and Sarah was delivered a couple hours later at 24 weeks and 4 days gestation weighing 1 lb. 11oz..  Our Dr. said we should have "no regrets" since we had held her in for 2 extra weeks but between breaking the water and the delivery there were definite signs that showed things were not good.  

Sarah was delivered crying and making noise and after 10 minutes they put her on a respirator.  She is big for her gestational age and her first day seemed "critically stable"--critical because machines were keeping her going but stable because she was responding and staying stable while on the machines.  

Since then: On Wednesday night we received a call in the middle of the night that Sarah was being prepped for surgery because an x-ray showed air in her abdomen and they needed to remove it and find/repair a hole in her stomach or intestines.  A short bit later follow-up tests showed that the initial x-ray's "air" was just shadows of Sarah's arms.  Good news but she also had been struggling on the respirator and had been put onto a higher powered one-a step backwards.  

Early Friday morning when we called to check in on her they had just finished dealing with a pulmonary hemorrhage where Sarah had been "teetering" and almost died.  A pulmonary hemorrhage almost always goes hand-in-hand with a brain hemorrhage and further tests showed that Sarah had suffered a major one.  She has brain damage and only time will tell how that will manifest itself.  We were told that her critical level was even more critical because she wasn't staying stable while on the machines.  

Over the last day and a half she hasn't had any more traumatic episodes like that, although its quite possible one can happen at any moment.  Her blood pressure was low and they are giving her blood transfusions to keep it up.  She also has one lung that is over inflating (think balloon that could pop) and the other that is slightly deflated.  Those are definitely concerns but overall the past couple days have been relatively quiet, though stressful (i.e. every time the phone rings, we startle).  

PLEASE PRAY: 
  • For Sarah to stabilize on the machines
  • For them to wean her to a normal respirator and off the high powered one
  • For Sarah's body to be strengthened and respond well to the treatments
  • For the four of us at home as we are stressed and try to balance life with the boys and Sarah
THANK YOU: 
  • for meals, encouragement and offers of help (next post will lay out ways you can help)
  • for offering to visit Sarah and us in the hospital--we appreciate your love and concern.  The hospital has a policy that visitors can come back to see Sarah only when Patrick or I am present.  Again, while we appreciate the love, we would like to limit visitors to just us, grandparents and our pastor at this time to keep her room calm and not too stimulated as well as keep possible germs to a minimum.  We'll let you know when this changes.  
We love you!
P, H, G, Z & S