Words

Tonight I can’t seem to find the words. I’m usually not at a loss for words. Maybe I have too many words. They don’t seem to be flowing like they usually do. More than anything I just don’t know how to start. I wanted this post to be special. Maybe the Lord just wants it to be short. Tomorrow is her birthday.

Faith

When we found out we were expecting our first baby, Katy Jayne, we made a list of names we liked, especially because of their meaning. So before we got pregnant, we knew if this little one was a girl her middle name would be Faith.

I'm humbled to know our story has also inspired many of you to greater faith in God. I didn't want to post one more time without asking you to praise our gracious Heavenly Father for the faith you've admired in us. Faith is His gift to us and means nothing without placing it in Him whose name is Faithful and True (Ephesians 2:8, Revelation 19:11). I think that's why Jesus said that you can have faith as small as a mustard seed and have all the faith that you need (Matthew 17:20). It doesn't matter so much how much faith we have as much as in what we put that faith.

We were reminded again last week that He is desiring more than anything to capture our hearts and inviting us to a closer walk on this journey with Him. He asks us to trust Him with all our hearts not just for this season but for a lifetime. On Wednesday of last week, we met with one of the doctors from Maggie Faith's team, a genetics specialist, to review the results of her skin biopsy, which we thought might help shed some light on her metabolic disorder. Guess what? The results were inconclusive! Sound familiar on this journey? We actually laughed at those words, not in a jaded way, but in a knowing way that the Lord has yet to reveal anything conclusive in terms of a diagnosis. Maybe His desire for us is greater than any diagnosis. We have to trust Him when we fear that future children might also have this condition or that our children could carry the genes that would mean they might walk this journey in the future. I place my hope in His unfailing love and that His arms are strong enough to carry me through anything. If you are inspired by our faith, would you direct your gaze to the One who is truly amazing?

Maggie Faith Olivo, deeply loved when there was only the promise of her, lovingly carried by her momma for 38 weeks, graced by her presence for four beautiful days, affectionately danced with her daddy into the arms of her Heavenly Father. Our tiny, priceless pearl who inspired us to greater faith in the One taught us how to love and loves us more extravagantly than we can fathom.

Mother's Day Musings

I thought I would celebrate today by sharing some of the thoughts I've been reflecting on in the past two months:

I'm so grateful for life and legacy. I realized today that I'm a daughter who has lost her mother and a mother who has lost a daughter and yet I'm so blessed by the lives of both.

I'm so grateful for music these days. It's actually one of the legacies my mom left me and my sisters. My mom was truly gifted vocally. She could improvise harmony to anything she heard. Music was part of our everyday life. We grew up in a musical--almost anything could cause us to break out in song. Music has always served us where mere words failed. I find music helps me express what's in my heart and reminds me of what's in God's heart toward me. Music can change ordinary places like living rooms and uncommon places like the NICU into sanctuaries where our hearts are drawn to God. Music is a beautiful gift.

I'm also grateful for the kindness of friends and strangers. Thank you for letting me tell our story! Thank you for considering it a privilege to cry with us! On the hard days when my heart longs to be with Maggie Faith, I take great comfort in sharing my memories of her life and the hope that we have as believers in Christ that we will be reunited with her in the presence of Jesus when our time on earth is through. Sharing Maggie Faith's life reminds me of all the blessings we have in Christ. Thank you for taking the time to read our blog and to comment or email or send us cards and letters. It really is a joy to know her life is remembered by others. For those of you who can't seem to find the words to express to us what is in your heart, please know that we understand your silence and so greatly appreciate the prayers we know you offer on our behalf.

I've also been thankful for Dr. Seuss...Don't you just love Dr. Seuss? His simple lyrical prose and whimsical art have captured the imagination of countless readers, both young and young at heart. I love his heart for children. His line from Horton Hears a Who is precious to me, "A person's a person no matter how small." We have loved each of our children since before they were born. I told Katy Jayne recently that I have loved them since I began dreaming of being a mommy when I was a little girl her age. That refrain from Horton Hears a Who especially expresses what's in my heart toward both my little ones who live in Heaven. We've recorded the life and legacy of Maggie Faith here, but I also want to honor the life of another little one I carried several years ago for eleven weeks before I miscarried. We named that little one "Sprout." We have given each of our babies a nickname while I carry them so that we can announce their given name at birth. We lost Sprout so early in the pregnancy that we don't know if it was a boy or girl so that baby remains Sprout in our memory. If you've ever lost a baby during pregnancy, we honor the tears you have shed and the things you do to remember the life that grew in your body however briefly. We agree with Dr. Seuss -- life is precious!

Before this turns into something that resembles ramblings rather than reflections, I'd like to end this post with some thoughts I wrote down in the booklet we compiled for Maggie Faith's memorial service:

To our precious family and friends,

You have been a treasure to us on this journey! The words “thank you” somehow seem inadequate to express all that is in our hearts toward you. We have been so richly blessed by your prayers, words of encouragement and comfort, for the tears you have shed for and with us. You have demonstrated your love for us in countless ways and your companionship on this journey has been priceless. We ask for the privilege of rejoicing with you when you rejoice, weeping with you when you mourn, offering the love and friendship you have so freely offered us. Our sincerest prayer is that Maggie Faith’s life would draw you closer to the heart of the Father! May He richly bless you for the kindness you have shown us!

With love,

Layne, Amy Joy, Katy Jayne, Connor, Jordan “JoJo” and Maggie Faith

Paying It Forward

Thank you so much for how you have surrounded us with your love and prayers! We are grateful beyond words for how you have walked with us on this journey! Many of you have expressed to us how Maggie Faith's life has impacted you and that you would like to celebrate her life with a gift. While we have no expectations of any of you in this regard, we would be delighted if you would honor those who so tenderly and compassionately cared for our sweet Maggie Faith and our family at Parkland's Neonatal ICU with a gift in Maggie Faith's memory, as a blessing to other families with critically ill babies under their care.

If you wish, you may make out a check to:

Parkland Foundation

2777 N. Stemmons Freeway

Suite 1700

Dallas, TX 75207

Please attach a note to your check indicating that you would like the funds to go to the Neonatal ICU in memory of Maggie Faith Olivo.

You can also donate online here. Please use the drop down box to designate your gift for the Neonatal ICU, and you can include Maggie Faith's name in the tribute information.

Thank you for your desire to honor her life with a gift!

Grateful that we are not alone,

The Olivos

Layne, Amy Joy, Katy Jayne, Connor, JoJo and Maggie Faith

Eulogy for Maggie Faith

When we gathered with friends and family on Saturday to thank God for Maggie Faith's life, I offered this eulogy:

"On the day Maggie Faith danced home to Jesus, I woke with such a deep love for my Savior. Before I even got out of bed that morning, I had to tell him how dearly and deeply I loved Him. In fact, though it may seem hard for some of you to comprehend, I am more in love with Jesus today than I have ever really been in my life! Maggie Faith has changed my life! She is His gift to me to draw me closer to Him in a way I have never experienced before. I’m more convinced of His power, His love, and His goodness than I ever have been. I love Jesus!! I’m in love with Him! Our deepest prayer is that He has captured your heart too through Maggie Faith’s life.

Today I’d like to share with you how He has captivated me. He gave me the great honor of being Maggie Faith’s momma. While we are experiencing a deep and abiding loss, here are some things we gained from being a part of Maggie Faith’s life:

A longing for Heaven

“Momma, why does God make people sick?” Katy Jayne asked recently. I paused and breathed a prayer and the Holy Spirit put these words in my mouth. “Sweet love, God doesn’t make people sick but He does allow sickness so that we long for a place where there is no sickness and no pain. Do you know where that place is?” “Sure, Momma, that’s Heaven with Jesus!” [Revelation 21:3-4]. I have never found myself so desperately longing to be in two places at once – here on earth to love on the family that God has so graciously and generously given me and with Him in Heaven holding my sweet baby girl, Maggie Faith. I can’t really explain it but somehow I feel as though I know the heart of God better and saw a glimpse of Heaven as a result of having seen the beautiful spirit he put in her fragile little body. On her good days, she would move her little feet just like a ballerina. In fact, I described her kicks while I carried her in my body as “dancing.” I see her dancing before the Lord to his sheer delight on those beautiful little feet. That vision is so beautiful it takes my breath away!

A greater sense of awe and wonder of our Heavenly Father...a desire to earnestly BELIEVE Him

She was so beautiful and so fearfully and wonderfully made [Psalm 139: 13-16]! He expanded my capacity to trust Him in this area. I remember the day I realized I really could ask Him to heal her of things like Down’s Syndrome. The God we serve is so big, unfathomable really, and delights when we pray asking Him to be Himself, to be HUGE [Psalm 77:13-14, Ephesians 3:20-21]. That realization was so essential when the findings from each test we had were worse news than the ones before. I asked God for some pretty unbelievable things from a human perspective. I think He delighted that I would ask even when He answered me, “Beloved, I’m so sorry. I have something different in mind for her. But thank you for asking! Thank you for believing I could even if I don’t!” I love Him so much! I could be disappointed that He didn’t answer my prayers the way that I prayed them. But instead of looking elsewhere for comfort I want to press into His presence, to experience His embrace more fully, to be loved so abundantly by Him, for my spirit to dance for Him like Maggie Faith’s, simply for His pleasure.

Maybe you are here today and you’ve asked some pretty amazing things of God and been disappointed by Him. Maybe you loved Him once but turned away because the pain of life was too great. Maybe you are no longer convinced of His power, His love and His goodness. Maybe you can identify with Jesus’ cousin, John the Baptist, who experienced doubt when He found Himself imprisoned for proclaiming Christ to his countrymen. John sent a few of his followers to Jesus to ask, “Are you really Him?” John was expressing what you may feel toward Jesus: “Have you forgotten me? Can you not do something about the situation I’m in? Did I risk it all for the wrong thing?” Jesus kindly answers his heart and yours, “Blessed are you if you are not offended by me” [Matthew 11:1-6]. Would you be willing to give your disappointment to God and let Him hold that burden instead of you? Did you hear in the passage that Layne’s dad read how God can turn the Valley of Weeping [Baca] into an oasis where others are comforted too (Psalm 84)? He is the “Father of compassion and the God of all comfort, who comforts us in our all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God” [2 Corinthians 1:3-4]. I pray that our journey and the beauty of Maggie Faith’s life may somehow inspire you to turn around and find that God is waiting with open arms to comfort you. His love for you is so fierce. Would you allow His love to quiet your heart so you can hear Him singing and rejoicing over you [Zephaniah 3:17]?

Maybe through Maggie Faith’s life you are meeting Jesus for the first time. We welcome you on this journey! We pray that you would see a little of our Heavenly Father’s heart toward you through our love for our little girl and our love for Him. I’m convinced the intensity of our desire to spend eternity with Maggie Faith in the presence of Jesus pales in comparison with His desire to spend eternity with you. Do you know how much God the Father loves you? He loves you so passionately that He sacrificed His Son for you so that you can live with Him FOREVER [John 3:16, 1 John 4:9, 10]. Do you hear Him speaking tenderly to your heart? Do you long to be loved like that? Do you recognize your need for a Savior, for that kind of love, that you can’t find it on your own, and you want to receive it from Him, to accept life with Him because of the life His Son gave for you [Romans 3:23, Romans 6:23, Romans 5:8, Romans 10:9, 13, Romans 5:1, Romans 8:1]? We long to see you in Heaven and so does He.

Maybe like us, Maggie Faith’s life has inspired you to greater faith in the Lover of your Soul. Would you press in? Savor your time with Him, press in, draw near to His heart through His Word, songs, hymns, fellowship with other believers, pray, pray hard, pray unbelievable things, ask Him to increase your faith and help you in your unbelief [Luke 17:1-6; Mark 9:14-25]. Press in...press in...press in!"*

*I was so blessed this past summer to have the opportunity to complete once again a Bible study by Beth Moore entitled Believing God. Many of the precepts you read here are a part of what I learned then. I could not have imagined what God was preparing me for, but I'm so glad He did.

Photos

For those of you who have asked, here are the photos that we had up front for Maggie's memorial service. These were all taken by our good friend Ami Trull. She is a wonderful photographer and she did a marvelous job of helping us preserve some very precious memories of our sweet girl.

Your Stories

Many of you have expressed to us how much Maggie's story has affected your lives. We would consider it a great testimony to her life if you would take the time to send us your story at maggie.faith.olivo@gmail.com and it would also help us to remember the great things that the Lord has done in our time. We are asking you to use this method instead of the regular comment section since many of you have indicated that you have had difficulty posting comments and we don't want to miss any one.

Maggie's Jubilee

A little after 2:00 this afternoon, Maggie Faith smiled at me for the last time as I danced with her, and she danced from her earthly father's arms into her Heavenly Father's arms.

He gives and takes away. Blessed be the Name of the Lord!

Layne

Sometimes "I Love You" means saying "Goodbye"

Yesterday was hard.

In the process of trying to determine the root cause of Maggie's problems, the doctors here have consulted with their expert on genetic disorders. His best guess about the source of her acidosis is something called pyruvate dehydrogenase deficiency which, as we understand it, is an inability of the body to produce an enzyme that is part of the process that converts glucose to energy. Is results in a build up of pyruvate and eventually lactic acid. This is a sub-cellular process and is not curable by human medicine.

Fortunately, our God is not human.

In treatment terms, at some point the drs believe that the current level of treatment will cease to be effective, and that the next step is dialysis. Again, this is not a long term solution, and would be a very painful and traumatic experience for Maggie, not to mention the inherent risks of major surgery on a newborn.

For most of last night, Maggie's pH level was hovering between 6.8 and 6.9. This is low enough that if it stays there, her systems will begin to shut down.

So we've had to begin the thought process of how much treatment is appropriate, and where to stop. We've decided that we're not going to put her through dialysis. If she goes that route, we're going to take her off of the machines, and enjoy the time we have left with her as a baby without all of the tubes and wires.

This morning, however, she has surprised everyone and rebounded above 7.0 and has been climbing. God's not ready for her to come home just yet!

Today is even harder.

At least that's what we thought early this morning.

In our daily conference with the doctors, it became clear to us that what we were seeing is most likely a delayed reaction to the medicine that she was on all last night. At some point in the night/early morning, the line carrying that medicine pulled out of position, and the doctors were unable to restore it to the correct position. Without major surgery, that is the only way they had to get her her medicine. Additionally, the medicine had already begun to increase her potassium levels, which would eventually be fatal in themselves.

From here on out, each additional medication that we elected to give her would add another layer of potentially fatal chemical imbalances, until there were simply too many to juggle. This, added to her underlying metabolic problems, makes it clear that human medicine is not going to keep her in this world. Any further level of treatment is simply going to treat symptoms and cause her pain without changing the final outcome.

Tomorrow will be the hardest.

Sometime on Tuesday, we will take her off of her ventilator, tubes, and wires. We will read her stories. We will sing her songs. We will pray with her. We will commend her into the loving, all-powerful, faithful, healing arms of our Lord and Saviour, Jesus Christ.

Amen.

Better

Our little Maggie is a fighter!  The drs gave her a dose of some  medicine to which she responded early this morning, but then she backtracked a bit, so they are going to put her on an infusion of that same med.  Her other chemicals (co2, o2, etc) are looking better right now as well.  

Thank you all so much for standing in the gap with us for Maggie. Please continue to pray for improvement and full health.  

Layne

Pray hard!

It's 5:15a and we just got a call from the NICU that Maggie's acidosis
condition is worsening and she's maxed out on the drugs she can have
for the condition. Pray that her condition would stabilize, that she
would respond to both the transfusion and the drugs they've already
given her. Please pray that our Father would strengthen our faith.

Layne

Current news 2010-03-13 5:00 pm

We had what they call a "Family Consult" with the doctors in Maggie's
team earlier this evening and got a little clearer picture of what our
precious girl is fighting, at least in some areas.

She is NOT dealing with a severe chromasomal abnormality as has been
speculated in the past. Her tests for the trisomy variants all came
back negative, which is a huge praise!

She is NOT dealing with either of the "Walker" named syndromes -
another huge praise!

The acidosis that she is dealing with, however, has become the
dominant concern. The easily fixable causes of acidosis (infection,
vitamin deficiency, etc) are being ruled out for now due to the
persistence of her condition. The current thinking now is that the
cause of the acidosis may also be the underlying cause of the majority
of her other issues. It's beginning to look like some sort of
systemic metabolic issue, many of which are untreatable.

Tests are being run, but the tests with quick results have all come
back negative at this point. At least this rules out a few things and
gets us closer to knowing what's going on. Results for the current
round of tests won't be known until later in the week, but they are
relatively confident that they can keep her stabilized through the
testing.

As a result of the number of samples needed for the various tests, she
is beginning to run low on red blood cells and is likely to need a
blood transfusion later tonight.

Prayer needs:
Please pray that the blood transfusion goes well.
That the tests would reveal a treatable cause for the acidosis.
For peace and wisdom for us as we discuss treatment options with the
doctors and neurosurgeons.
We know our God is far greater than we can imagine or concieve, and we
are praying that He would reveal Himself in an astounding and amazing
way and heal our precious pearl.

Layne

Photos 2

Photos

Not sure what the formatting is going to look like when these post,
but here are our first photos.

Day 2

AJ got to hold Maggie for about an hour and a half late last night and we saw some smiles this morning.  AJ is up walking around and recovering really well.

Maggie is generally doing well, too.  Her acidosis is stable, not going up or going down, but they still don't know a reason for it. There are a bunch of tests being run, but it's going to take a few days before we get results from them. 

After looking at the MRI, the neurosurgery team thinks that Maggie is not dealing with either the Dandy-Walker or Walker-Warburg syndromes, but rather something called aqueduct stenosis which is an obstruction of the flow of the cerebral fluid, and is the apparent cause of the excess fluid on the brain. There are some treatment options available, and we will be discussing those with the neurosurgery team when we talk to them hopefully later today.   

We are so grateful for the time we've already had with Maggie.  She is such a blessing and such a beautiful  example of God's artistry!  

 

Please pray that the doctors would be able to find the root cause of the acidosis and then that they would be able to treat it effectively and eliminate it. Please also pray that we and the doctors would have wisdom in finding a course of treatment for the stenosis.    

Layne

New Challenges

Some of the blood tests have cone back and the only unexpected result
was the presence of some metabolic acidosis in her blood. It basically
means that her blood is somewhat too acidic and can't carry oxygen as
efficiently as threy would like. They have started a treatment regimen
and it is responding to the treatment, if a bit slower than they would
like to see. Please pray that she would continue to respond positively
to the treatment and that the acidosis would continue to recede.

She is currently having an MRI done and we should have the results of
that sometime tonight. She has had a team of neurosurgeons visit her
and after examining the results of the MRI, they are anticipating that
they will be able to make some recommendations for treatment options.
Please pray that they would have wise council for us and that they
would have eyes to see what our Father is showing them.

Stable and resting

Quick update:
Maggie is stable and resting. They have all of her tubes and wires hooked up and she is napping in the middle of a long, hard day. Her blood pressure is good, her heartrate is good, but her oxygen intake is a bit low.

So far, they have taken several blood samples to test for chromasomal anomalies and other issues. She has had pretty much a full body sonogram, and is having her oxygen intake constantly monitored. She has had a chest x-ray which showed that her lungs are slightly underdeveloped, which is to be expected.

They see trying to get her scheduled for an MRI later today and a neurosurgeon team is coming by later to evaluate her and discuss treatment options.

AJ is resting comfortably for now, and is looking forward to being able to come see Maggie.

Maggie Faith Olivo!!!

Maggie Faith Olivo arrived about 10:40 and told the whole delivery room that she was here! She is stabilized and headed down to NNICU for further testing. We'll know more about her in a couple of hours. Praise God, she is breathing and kicking! She even opened her eyes a bit to see this new world she'd been introduced to.

Time to go

We're heading into surgery now.

Parkland Arrival

We have arrived at Parkland. Thanks so much to everyone who is praying for us. Your stand with us strengthens our faith.