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

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)

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. 

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

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