Straight from Grandma's arms into the arms of Jesus

Last night we got the phone call we have been dreading.... Hope suddenly took a turn for the worse and passed away early yesterday evening. She had been doing so incredibly well and was even stable enough to be moved into a "regular" room earlier that day. Aaron and Sara had left the hospital to put Jonah down for a nap and Hope's Grandma Mimi and Nana were enjoying some cuddle time with Hope when suddenly her heart stopped and a team of hospital staff rushed in to resuscitate her. Unfortunately their efforts we unsuccessful and our baby Hope went straight from Grandma's arms into the arms of Jesus. Aaron, Sara, and Jonah were able to spend some family time with Hope after she passed as they tried to say good-bye. What a difficult yet beautiful moment that was for them. Prior to last night, Jonah's time and ability to touch and cuddle his baby sister were extremely limited due to her risk of infection but last night he was free to hold and kiss his baby sister as much as his sweet little heart desired. Today they will begin the difficult process of planning for her funeral and making preparations to head home.

Thank you friends for all your love and support through out this process!!! Please continue to pray for us over the next few days as we grief the loss of our beautiful niece yet celebrate the beauty of the cross and it's promise that good-bye is not forever. It's hard not to let our minds wander to what Hope's life might have been. Knowing how AMAZING her parents are, I have no doubt she would have been such a beautiful person inside and out. But we know that the God of Hope works in ALL things for the good of those who love and are called according to His purposes (Romans 8:28).

"Held" lyrics~ Natalie Grant
Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
This is what it means to be held

Hope's baby step to healing

Here's an update from my sister about Hope's first heart surgery...

It's been a long and anxious day, but we are happy to report that our little princess warrior has pulled it off! I apologize for taking so long to send out a full update. However, the news was coming in bits and pieces and I wanted to wait until we had a clearer picture of how the day went. Hope was wheeled into surgery at about 8:00am EST this morning and remained there for approximately five hours. Overall the surgery was deemed a success. There have been a few minor setbacks, but hopefully nothing that will prove to be significant. During the critical part of the surgery when she underwent circulatory arrest to fix her heart, the surgeon discovered that her aortic valve was much more narrow than anticipated. The surgeon usually completes this surgical step in about 25 minutes (time is of the essence since the baby is in arrest) but because of the narrowing of the valve, it took her 37 minutes. Aaron said that when speaking to her afterwards, it was obvious that she felt a big "victory" for being able to even fix it at all, as it appears that this particular surgery was anything but routine. Please pray that the extended period of arrest does not carry with it any additional neurological damage to Hope's rapidly developing brain.

In addition, there was a complication with Hope's IV in her right hand. I am not a doctor (unless you count my honorary MD from the University of Google :)), so I am not sure of the medical term -- but the IV slipped from her vein causing the fluid to seep into her tissue, which in turn caused her hand to blister. The doctors tending to Hope immediately called in a plastic surgeon to make sure there was no nerve damage. So far it seems to be under control, but only time will tell.

Hope's chest will remain open for the next few days protected by a clear synthetic skin-like covering so that the doctors can monitor her heart's function and check for swelling. Because of this, she will remain heavily sedated. Aaron and Sara were able to visit her later in the day and reported that she had the hiccups, jerked her foot back when they tickled the bottom of her feet, and was engaging in the sucking reflex. These are all positive signs and we are very grateful for all of her seemingly "normal" newborn gestures.

Aaron and I spoke early this morning shortly after Hope went into surgery. As long as I live, I don't think I will ever forget that moment --- lying in my bed in the dark at 6:00am local time, talking with my "baby" brother about his beautiful baby girl and the challenges she will face, and yet being blown away at his courage, strength and unwavering faith in God and His grace. Throughout the day, it was hard to force the negative images and thoughts out of my head. But luckily for me, Aaron unknowingly provided me with a positive picture in my mind which I held on to all day and shared with anyone who asked about my niece. During this conversation, Aaron expressed how difficult it had been for him and Sara to get any sleep the night before. Finally at 4:00am, they gave up and headed to the hospital. There alone in the NICU, they gave Hope a sponge bath to make her all clean and pretty for her big day --- her new shot at a long and happy life. It was the image of the three of them sharing such a special moment that I chose to focus on as the day wore on. :)

Thanks to all of you for your prayers and good thoughts

Hope has proven herself to be a fighter...

For those of you who I never got in touch with yesterday, we just wanted to let you all know that Hope Elizabeth (my beautiful niece with left hypoplastic syndrome) was welcomed into the world early yesterday morning, March 1, weighing 6 pounds and 11 ounces. Sara went into labor late Saturday evening, spent 3 hours in active labor and delivered Hope with no drugs at all. In my opinion, this makes her certifiably insane, but my hero nonetheless. I talked to my mom a bit ago and Hope is doing awesome. She is over 24 hours old and has yet to be put on the ventilator or need any oxygen at all. Sara said she is still a beautiful pink color. This is significant, as most babies with her condition begin to turn blue by 12 hours of age and need breathing assistance. The doctors are encouraged by her strong set of lungs and have scheduled her surgery for early Wednesday(earlier than originally planned because she is such a fighter and doing so well). This is the first of three open heart surgeries...and unfortunately the one with the highest risk of complication. They will have to leave her chest open and keep her in complete isolation for at least 2 days following the surgery.

However, yesterday we choose to celebrate the first day of her long life.Today we will focus on the road ahead, but I also wanted to take today to rejoice and praise God for bringing Hope into our family!

Any thoughts or prayers you can send their way would be a blessing. You can read more about this amazing little girl on her Caring Bridge web page at http://www.caringbridge.org/visit/hopemaus. If you have the means and want to send some financial support, let me know and I can get you in touch with the right resources. Unfortunately, we couldn’t get donations set up through the Caring Bridge web site.

HOPE IS HERE!

Welcome to our world, Hope Elizabeth Maus!! My niece Hope was born in the wee hours of the morning today. She weighed in at a hearty 6lbs 11oz. And so far is tiny heart is holding up! There is a little extra sunshine, laughter and happiness in our world today. Today we celebrate her birth and will continue to celebrate this day on her BIRTHday for many years to come.

Hope was born in Ann Arbor Michigan because on February 3, Hope was diagnosed with a serious congenital heart defect after an ultrasound presented with abnormalities. A normal heart has four chambers, two on the right and two on the left. In performing its basic job — pumping blood throughout the body — the heart uses its left and right sides for different tasks. The right side moves blood to the lungs. In the lungs, oxygen enriches the blood, which then circulates to the heart's left side. The left side of the heart pumps blood into a large vessel called the aorta, which circulates the oxygen-rich blood to the rest of the body. Hope's specific defect is known as "complex single ventricle" -- a term describe a group of rare heart defects, which have in common, a large single pumping chamber or ventricle instead of the usual two.

Although this defect is not correctable, some babies can be treated with a series of operations, or a heart transplantation. Until an operation is performed, the ductus is kept open by intravenous medication. Hope will most likely undergo her first open heart surgery sometime later this week (in the next 4 to 8 days).

But I am completely amazed, humbled, and brought to tears at how faithful God has been already throughout this whole journey. I have not made it through one phone call with Aaron or Sara since February 3 without crying but usually they are “happy tears”. On their first Sunday in Michigan, after attending a new church, Aaron and Sara met a wonderful family who generously offered to take Sara into their home, lives, and heart. She has been staying with them over the last several weeks. They also have graciously offered Aaron and Sara the use of an empty house on their property for them to stay in as they wait out this long and difficult journey to healing that Hope is on. Sara’s best friend, Natalie, made the journey up to Michigan with Aaron and Jonah this week, and she will be staying with them to help care for Jonah while Sara and Hope are recovering in the hospital.

Over and over, God has showed up at every step along this journey to prove that He will provide from the most mundane or trivial needs to the most huge and basic needs. Throughout the bible, God’s great providence is an underlying theme. The word providence is defined as “the foreseeing care and guidance of God over the creatures of the earth, a manifestation of divine care and direction, prudent management of resources, and provident care.” Over the years, I have seen that God loves to use His precious people as instruments of His providence. Aaron and Sara’s testimony the last month is evidence of that!

In Matthew 18:19, 20 Jesus says, “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them." I think Jesus was trying to show us that He chooses to make Himself present to us through each other. We are the body of Christ and when are going through difficult times that require God’s providence and an extra dose of God’s presence, He often makes Himself known through other family members in the church. God had a divine plan and purpose when He devised the body of Christ, the global family of God. Our biological family may not be close enough to physically care of us during difficult days. It’s been killing me to know that, other than praying, there hasn’t been a lot I can do right now to help my little brother and his precious wife. But God has surrounded them with brothers and sisters to love on them and care for them in ways that I can not. And that has been amazing to see!

Please continue to pray for Aaron, Sara, Jonah, and Hope this week. You can get updates on how Hope is doing, see pictures, and sign their guestbook http://www.caringbridge.org/visit/hopemaus

He's working it out....

You Are God Alone!

Jake and I have found ourselves smack dab in the center of an extremely stressful season in our lives. There is not just ONE thing at the source of our stress just a combination of many things and circumstances that seem to be piling up and reminding us daily that we are not in control! But I think God allows stressful seasons like this one into our lives to help keep this faith thang in check. If there were not sooo many circumstances in my life that are absolutely out of my control, then I might get a false sense of power and this season has done nothing if not caused me to surrender to the God who is calling all the shots and working EVERYTHING out according His plan and His agenda, not mine. (Ephesians 1:11). I am confident that my faith is strengthened every time I find myself not in control and not even wanting to be in control.

One of the most frustrating things about faith and trusting in an unseen God is when life just doesn’t make sense. And things that are happening in life leave us asking, “Why?” But God has more of a right to ask us “why?” than vice versa. And over the years I have learned that answer to all my “why?” questions will always be simply because He ALONE is God and His ways are always higher than mine and He sees the BIG picture when I can barely catch a glimmer of a glimpse of the picture.

I am reading this amazing book called “Crazy Love” by Francis Chan and in it he asks, “Can you worship a God who is not obligated to explain His actions to you? Could it be arrogance that makes you think God owes you an explanation?” He also says “not being able to fully understand God is frustrating, but it is ridiculous to think we have the right to limit God to something we can capable to comprehend. What a stunted and insignificant god that would be?! If my mind is the size of a soda can then God’s is the size of the ocean….”

Music has a way of speaking volumes into my stressed out soul and lately I have fallen in love with this song “you are God alone…”

You are not a god
Created by human hands
You are not a god
Dependant on any mortal man
You are not a god
In need of anything we can give
By Your plan, that's just the way it is
[chorus]
You are God alone
From before time began
You were on Your throne
Your are God alone
And right now
In the good times and bad
You are on Your throne
You are God alone
You’re the only God
Whose power none can contend
You’re the only God
Whose name and praise will never end
You’re the only God
Who’s worthy of everything we can give
You are God
And that's just the way it is
Unchangeable
Unshakable
Unstoppable
That's what You are

“But you, O Lord, sit enthroned forever; your renown endures through all generations’ But you remain the same and your years will never end.” ~ Psalm 102:12, 27

“For my thoughts are not your thoughts, neither are your ways my ways,’ declares the LORD. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” ~ Isaiah 55:8, 9

“In him we were also chosen, having been predestined according to the plan of him who WORKS OUT EVERYTHING in conformity with the purpose of his will, in order that we, who were the first to hope in Christ, might be for the praise of his glory.” ~ Ephesians 1:11

Celebrating this day in history... when the most amazing man on the planet was born (and yet God chose me to be his wife)

So today is my sweet husband's 32nd birthday! In honor of this occassion, I am going to list the top 32 reasons why this day and this man should be celebrated...(also because we are cheap, money is tight, and I am trying to think of as many ways to make him feel speical without spending lots of money) Drum roll please... (in no particular order):

1. He has more faith, courage and boldness in his little pinky than most people have in their entire bodies (myself included)!

2. He is the hardest worker I know. And even though I sometimes complain about the way he never stops working, it also makes me very proud that he is so dedicated to providing for our family and further God's kingdom

3. He inspires me and others to want to be a better person and not to waste our lives but make the most of every opportunity God placing before you

4. He can make me laugh so I hard I cry even when I am determined to be in a bad mood

5. He is man's man who is also not ashamed to cry about things he really passionate about

6. He can honestly say that no one's opinion of him matters other that God's and he is not afraid to live his life that pleasing one

7. He occasionally cooks dinner and even cleans the kitchen after wards. He makes amazing enchilada soup, chili, pancakes (not in Haiti), spaghetti, and he has mad grilling skills

8. He is VERY transparent with people and will be the first to admit his weaknesses, apologize when he has done something wrong, and take ownership for his action and past mistakes

9. When he sets a goal for himself, he will go to great lengths to accomplish it and is so determined it's scary

10. When I first became a Christian, I was terrified about the parts of the Bible that ask women to be submissive of their husbands. But the way that he unconditionally and unselfishly loves me makes submitting to him just a natural overflow and reaction to that kind of love

11. He has such a servants' heart in so many ways.... which I was reminded of last week as I watched him clean up the vomit that covered our bathroom floor after a sick child didn't quite make it to the toilet

12. He laughs and smiles a lot... and the extra wrinkles of his face just prove that.

13. He loves our daughter in such a way that will require any prospective husband to have big shoes to fill and a high standard to live up to

14. He does pretty all the laundry... really he does. I hate laundry and he has just always done it

15. He rarely complains about anything and lives out Philippians 4:12 in a way that amazes me

16. He has changed more poopy diapers and given more bedtime baths than any man I know

17. He would give away the shirt off his back and our last penny in the bank if a friend needed it (and he has). He uses everything that God has given us to bless other people (our house, car, education, resources etc..)

18. He always see's the glass as half full

19. He forces me to try new things and get out of my comfort zone and I love him for that

20. He has no desire to "keep up the Jones" and refuses to let our family become another causality of the American Dream

21. He is the most amazing Dad to our children and any other children God places in our life that need a daddy.

22. He has the ability to see hurting people, find out what they need, and then bend over backwards to make sure that need is met

23. He truly believes that "anything is possible" and and always encourages and challenges the people around to do more "big" and "impossible" things

24. He has never met a stranger and when he talks to you has an uncanny ability to make you feel like you are the only person in the room

25. He is very protective of his family and God's church

26. He see's the injustice of the world and wants to BE the change

27. He chooses to be a blessing even when cursing would be so much easier

28. He is always a student... doesn't think he knows it all, has everything figured out, or has arrived

29. He has overcome a lot of really difficult obstacles in life and learned from every one of them

30. He has forgiven some the most "unforgivable" people

31. He will die long before his convictions about certain things do

32. He's smokin hot!!!

the picture of us holding happy birthday daddy signs (another cheap gift lol)

HAPPY BIRTHDAY JAKE!

Baby Hope

My brother and his wife have a big decision in front of them. Their baby, Hope, has something called Hypoplastic Left Heart Syndrome. There are only two options... multiple surgeries that will "temporary" fix it (which will probably need to be done in Michigan) or let her become sick and wait for a heart transplant that would more "permanently" fix it. Right now they are going to try to find out her blood type so they are better make that decision based on her blood and the likelihood of an infant heart transplant. Please send lots of prayer their way as they try to make this difficult decision and especially that Sara can remain pregnant as long as possible so Hope can be as healthy as possible at birth (Sara has a history of premature births but Hope isn't due until first of March). They have an appointment with a fetal cardiologist on Tuesday. So we should know more about what is to come then.


We keep reminding ourselves that her name which was chosen weeks ago prior to this diagnosis... Hope is what we need to cling to.



"When the world is falling out from under me, I'll be found in Him, still standing!"