Saturday, December 2, 2017

Ezra's 5th birthday in heaven

Today was our day to welcome the Christmas season in our home. We've done it this way on December 2nd for the past four years and the meaning behind it is incredibly significant to us. Five years ago today I was in labor, expecting our second baby boy, Ezra Shepherd Sweat. I was in an abnormal amount of pain, and when they put the doppler to my stomach for a heart beat they found none. My world spun. I literally remember the room spinning, Steven crying, and all I could say was "oh God". I still don't know if I was saying that as a cry to God or as an exclamation of my shock and pain. I gave birth to him a few hours later. I remember feeling a wonderful excitement when I first saw him after my final push, then the next second complete devastation when I remembered that his beautiful, tiny body was lifeless. But he looked so perfect. So incredibly perfect. I held him and I loved it. I loved him. I held him our entire 2 day hospital stay. The real pain began when we had to leave him and somehow begin to live life again after leaving the hospital as a postpartum woman with empty arms.
In many ways I'm thankful that it was Christmas time. It gave me a reason to get out of bed. It gave me things to do with my family that felt purposeful. Eternal. And that's all I wanted to engage in - eternal things. I praise God for the foundation of truth he had laid in my life leading up to this painful time, because it all came back to me then. In songs, hymns, verses. I knew beyond a shadow of a doubt that my baby was in heaven. I think he just blessed me with never doubting that. And so out of complete desperation and pain, I read the scriptures. I listened to hymns and music about Jesus. Anything that would keep my mind fixed on heaven because that kept my connection to my baby who was in heaven. It gave me hope. For me, losing a child so suddenly left me feeling utterly helpless and gave me a raw, deep down, soul realization that I am completely powerless and I need the complete power, compassion, and love that only God can give. Otherwise, I was sunk. That Christmas season, though filled with pain, was the beginning of the most intense time of spiritual growth in my life. The meaning of advent became deep and real. I could suddenly identify on some small level with the pain God must have felt when he sent his only son away from him, to a place where his son was destined to die. To give his life to save the lives of his father's creation. I still feel like I haven't connected all of the ways in which this experience of my loss deepens my appreciation for God sending his son at Christmas. And I suppose I prefer it that way. Each Christmas season there are new dots to connect and little pieces of a bigger picture continue to find their place and I relax a little bit more into the mystery of how God loves me. It seems that he often reveals his love in ways that don't make sense to me. Sometimes it doesn't feel like love, it feels like pain. But I know that my ways are not his ways, and his thoughts are higher than my thoughts. So how could I understand? How could I know why he does things the way he does? Maybe the goal isn't for us to know how, but for our trust to deepen. I am the created of my creator. I could not possibly know his ways. And when I count all the gifts he has given me, when I look at my amazing husband and my three little miracles that follow me most everywhere I go, I feel very loved by my creator. And when I look at the star on the top of my tree while "Hark the Herold Angels Sing" fills my living room, then I am filled with wonder that God really loved me so much that he gave up his son. I know that kind of pain. I would never have chosen it, but God did. Only a truly loving God could make a sacrifice so great.
And so our Christmas season is bittersweet. Bitter because we will never stop missing our baby while we are here on earth, but it is so poignantly sweet because of my renewed hope of heaven and deep assurance of God's love and Ezra's life is what points me towards all of it. Though it was a painful and mysterious gift to unwrap, he truly gave us an unspeakably sweet gift when he gave us Ezra. He gave us life. Eternal life.
So today we ushered in Christmas with Christmas traditions and Ezra's birthday traditions. We made Christmas cookies, let balloons "go to heaven" for Ezra, trimmed our Christmas tree, and dedicated the whole day to being together as a family and enjoying the gift of one another.
Happy birthday my sweet baby Ezra! We love you and miss you!

Monday, February 16, 2015

Asa's first birthday!!!

I am both happy and I'm sad at the same time. I feel strangely overwhelmed because an era has ended. Any mother on a child older than one knows that feeling that I am trying to describe.

Today, my little baby Asa is turning one!! It's not possible! That was, by far, the fastest year of my life!

This little energetic ball of joy is so treasured! With his birthday fast approaching, I have spent many evenings this month just holding him as he sleeps. Cherishing the baby moments. Savoring the chubby fingers and cheeks. Reflecting on the long, hard struggle it was for him to be here.

It really was hard. Asa has overcome so much! Asa's pregnancy was filled with days of anxiety. I was scared everyday that the same thing that happened to Ezra would happen to him. I was afraid that I would start to feel the cramping and pain of Asa's placenta tearing. Then one night I actually did feel those very feelings !and I saw blood. We knew what these signs meant and wasted no time in getting to the hospital. It was indeed a tear in the placenta, that after a day, healed itself.

I just have to stop everything and praise God for that! As I was in the hospital for a week being monitored, my precious church family rallied around us to pray for healing, and the Lord heard us and answered us! Amen! I will always look back on that and know that God very faithful, present, and real.

On top of that, we had found out a weeks prior to the bleeding, that Asa had a congenital heart defect called Transposition on the Great Arteries. This heart defect is fatal without a successful surgery. After we had received the diagnosis, I remember just sitting in the car in the parking lot outside of the hospital feeling paralyzed. Frozen. Stunned.

Again God? Really? 

I remember having a million questions violently swirling through my mind.

Will we really get to keep this baby?!  Now I wasn't so sure.  Will he ever be healthy? Is he going to be able to play with his brother and keep up with him? Is he always going to be "sick"? What is this? God what are you doing to us? Don't I deserve a peaceful and uneventful pregnancy after all I've been through?

And about every 30 seconds, my mind would come back around to the burning question;

God, will you please let us keep this baby? Please, please, please...

We were, no doubt, positively stunned and struck. We indeed felt struck down, even kicked to the curb, but we quickly got back up again.

We had just lost our son, Ezra, less than a year ago and we were still here. Still standing. Still trusting God. Still finding joy in the blessing he has given us. We deeply knew that God would be there. He had a purpose in the diagnosis and would carry us through.

I wish I could go into the details of Asa's heart surgery and recovery, but I believe the details of that tale are for another time and it deserves to stand alone.

I do want to touch for a moment on the peacefulness of the way that Asa came into the world. When I think back on Asa's labor and delivery, I think of peace. I think of God's gracious kindness to me. I want to talk about Asa's birth because it was, as I remember it, so wonderfully restorative!

I went into labor naturally the day before I was to be induced - God's first act of kindness. I have a history of labor progressing very slowly, so I was shocked when the nurse checked me and I was dilated to a three after only experiencing very manageable early labor contractions for the past five or six hours - God's second act of kindness. When my wonderful Doula (who is also a precious friend and strong women of faith) arrived, my body calmed at her direction and we were all working through my contractions with ease- God's third act of kindness. I worked through my contractions as long as I wanted to and then got my epidural. After waiting a little longer than usual for the epidural to kick in, i got comfortable. We had talked with the doctor about breaking my water because it helps my labor move along much faster. During the time we were waiting for the doctor to return, I felt a warm, wet feeling on my leg. When the nurse checked, she told me my water had broke on it's own - God's fourth act of kindness. We continued to wait and watch my contractions on the screen, when the nurse announced that she could see the head and we should try for a "practice push".
Steven and our Doula, Lindsay, all ready for delivery.
 My nurse had me count to ten while I pushed with a contraction, but she frantically stopped me before I got to 3 because he was coming straight down and she didn't want to have a baby delivered without the doctor there! It only took 8 minutes of pushing with my contractions for Asa Nathaniel to enter the world! Another incredible act of kindness from God!

They placed him on my chest and time stopped. He was perfect. He was beautiful. I felt no fear. Just the warmth of my tiny, living baby rooting for his mommy. I looked at his eyes. They were open and alert. There are not enough words to describe the glorious purity of that moment.

The bubble was invaded, but not popped, when a nurse came a nervously said "ok, that's good" and took him to receive all the medical attention he needed. Steven went with Asa into the resuscitation room, which was adjacent to the delivery room with an wide open door between them.
The view from my bed

Steven in the resuscitation room
 I was able to watch from my bed while they went to work on our little baby who, we were told by the doctors before his birth, could have been born blue due to his heart condition.

But he wasn't!! He was pink!! He was moving!! He was perfect!! He looked like a healthy newborn baby!! Another direct act of kindness from God!! God really revealed his power over the medical world in this deliver, which set the tone nicely for the long wait for heart surgery that we were about to endure.
Our perfect little bright eyed miracle

I will never forget the moment when my Doula, who was with me when Ezra was born, looked me in the eyes and said "he's here" and she gave  me a kiss on the top of my head. That moment to me communicated her love toward me which I cherish. But it also communicated God's tender love toward me. I almost felt the warmth of his hands on my shoulders, and we watched Asa move with life while specially trained neonatologist and cardiologist worked on his tiny body. And I smiled. All I could do was watch and smile.

When they finally brought him to me he was all hooked up to all kinds of wires. To my great joy, they let me nurse him! Oh, this was a longing fulfilled! After Ezra was born, my body did not realize that there was no baby, and my breast filled with milk. It felt like life was rubbing it in my face that didn't have my baby. It was painful. Nursing was something I was so looking forward to being able to take part in with Asa, but when he was diagnosed with this heart condition the doctors were not hopeful that we would be able to nurse. So we added this to the prayer list! And God in his kindness, answered!

Not only was I able to nurse him right after he was born, but I was able to nurse him exclusively during his NICU stay! That is not the "norm", so it was a continual reminder of God's kindness to us each time I got to nurse that tiny, sweet thing. During the first week of his NICU stay, we were the happiest NICU parents you could ever meet! It really felt like pure joy and we had to remind ourselves that had a heart condition.

This was our room for almost a month

Ah, Asa's birth was wonderful! A far cry from the trauma of my last labor and delivery. God was there at every step! And he graciously revealed his workings to us by making them so very obvious.

That delivery "should" have been scary and frightening. When I was anticipating it in my head, I pictured a dark and sterile room. I saw images of a hard, anxiety filled labor and then giving birth to a blue baby, who would get taken from me immediately for his life to be determined as the doctors worked on him.

But it was so the opposite. I labored during the day in a room filled with light! The atmosphere was warm and familiar. And when Asa was born, he was pink! His eyes were wide open and he was moving.

Knowing him now, I could not imagine him entering the world any other way, but alert and moving!
I look him now and I would never guess that he has a heart condition! He is active, he is healthy, and he has been ahead of the curve in so many areas! This child had eight teeth by the time he was six months old....and nursing! (yeah, it hurts!) He was army crawling at 5 months and crawling on all fours by 7 months! He is so very verbal! He had his pincer grasp down a few days after we offered him real food!

He's perfect! He's healthy! While God did allow for some of my fears to come true, he proved SO many of them wrong! I look at this child and I cannot be anything but thankful! When I see Asa and  I see that beautiful scar, I think; God prevails. God provides. God heals. God is kind. He is for us, so who can be against us? God loves his little children. 

It may go without saying that surgery was a success! As I mentioned earlier, I feel that the details of his surgery are for another day and another post. But in a large nutshell, It took one very long month of waiting to finally have his heart surgery. With this condition, surgery is typically done within 10 days of birth, but Asa was so stable and doing so well that he kept getting bumped from surgery. We were thankful he was doing well, and that other children who needed surgery immediately could receive it, but after a few weeks of waiting it started to get scary. God was asking us to trust him big time, and boy, did we breath a sigh of relief when Asa's heart could finally be healed with surgery! It was terrifying to anticipate such a huge operation, but just as terrifying to continue to wait with his heart "unfixed". He rocked his recovery like a boss and we were out of the PICU (pediatric intensive care unit) within three days of his surgery! On the recovery floor, Levi could finally be in the same room as Asa. Because of cold and flu season, it was against regulations to let any child into the ICUs. Although, when we transferred to the PICU (which is where all heart patients go to be prepped for their surgery and recover from their surgery) we had a sweet nurse who helped us arrange a meet up for Levi and Asa during the move.

My boys meeting for the first time

Here are a few pics from Asa's surgery and recovery: 

And now for a picture overload: 

coming home from the hospital for the first time at one and half months old

Levi in love

Finally, getting to cuddle with both boys at the same time.


I cannot stop looking at this picture!

get it, Ace!

those sparkly eyes look straight into your soul. Many people have told me that he is an "old soul" and when I look at this picture, I believe them!
My little Jayhawks
They are so beautiful
My boys and their 'stats"

sweet smiles

Me and Acey on Mother's day. That was a sweet day!

getting checked out

During a follow up Cardiac appointment at Children's Mercy Hospital. 
His defined chin is one of my favorite features!

that face
Such a strong little guy! He was holding onto our hands and  pulling himself up to standing from laying down  at 3.5 months!

He's so sturdy!

baby laughs

I would say this is the expression on Ace's face about 75% of the time

bonding over book eating

bouncing with Grandpa 

Getting his first tastes of "solid" food. Of course he pauses to pose for his paparazzi.

Big enough for the highchair!
Asa got croup this winter and we would bundle him up in a bunch of blankets and take him out to breath cold always turned into an event!

Wearing mommy's sweatshirt from when she was a baby

love him!

Asa and I being all matchy on Ezra's birthday

my beautiful boy


This one is my all time fav

Ready to move

Watching KU basketball with Daddy

They have some crazy playtime in the crib together

Big brother shirts!

Always smiling

Morning babies with sleepy eyes. <3

This picture just makes my heart sing! And may I add, I did not ask them to do this! It was one of those perfect moment when something precious was happening and I actually had my camera ready to capture it!

Asa with his buddy Mac!!

Me and my babes

Crazy brothers

Baby bath's in the kitchen sink are my favorite

"because I'm happy"

Asa on Rody, who is his favorite bouncy friend!

In all his glory
getting baptized
Watch out! Ace loves to pull hair!

He pulled himself up to standing at 7.5 months. He's so proud!

I can't get enough!

Stop it!


Remember what I said about pulling hair? Sorry Levi!

10 months old, getting read for an echo at another follow up cardiac appointment. He looks so mature in the picture.

look at those lashes!

I LOOVE my after bath time cuddles!

Going swimming with Aunty Caroline!! We miss her!!

My little miracle

Reflecting on this past year and a half feels good. Especially knowing where we are now! It has been a long slow climb uphill, and it has been so refreshing to finally be at a plateau! But what makes it even richer, is taking the time to look back and enjoy the view from this precious resting place. 

So, my sweet little Asa Nathaniel,
happy birthday baby boy!
You are a miracle!
You are a treasure!
You fill our lives with incredible amounts of joy! 
(and bouncing!)
God has blessed us so much with your joy filled smile!
 <3 <3 <3  I can't wait to see what year number two with you holds!  <3 <3 <3