She Will Be

by Maddison Bouget

I have always believed that God had a plan and purpose for my life.
I believed that He had a path predestined for me. 
I never imagined that this would be that path.

I was raised with a solid foundation of faith and attended First Baptist Nederland as far back as I remember.

When I met my now-husband, Blake, he was attending Bridge Point Fellowship and serving in youth. He invited me to a youth event, we got married, and I ended up on staff as the Children’s Director for their Kids Rock Jr. program. 

Our marriage began on a path pursuing Jesus and His plan for our lives. 

We knew that plan involved children, and after three years, we started trying. 
It only took us three months to get pregnant, and it was a rough one.
I was sick nearly every single day, all day, until around week 22. 
I thought that was just how pregnancy was, so I kept moving forward.

At 23 weeks, I developed a rash on the back of my ankle.
I went to my PCP to get antibiotic ointment, thinking nothing of it.
I did routine vitals, but my blood pressure showed it was 210/160.
A reading that would be at risk of a heart attack or stroke.

I had no odd symptoms and felt fine physically, so my doctor took her own blood pressure to check the machine. Her vitals were a healthy reading, so we knew that something was going on.

We called my OB, who said we needed to come to the hospital and get me to Houston.
I didn’t realize the severity of the situation, so I went home, prepared, and packed.
I remember getting to St. Elizabeth and being met with urgency and questions.
Where have you been??

I was checked in as they called for a life flight.
We didn’t know what was happening, but we knew it was serious.
Delivery was never on my mind.

When I got to Houston I was 23 + 6.
24 + 0 is the first day that doctors consider potentially viable delivery.
We had an emergency c-section and were told that life was unlikely.
Because of the urgency of labor, I couldn’t get the steroids to help her lungs.
We were left with a 1% chance that our baby girl, Blakely, would live.

I know that in the next few days I was heavily medicated and completely out of it.
Blake was left to deal with it, although he had our parents, the Richards, and church family assuring us we would not walk through this alone. Doctors told Blake that they weren’t sure the intubation tube would fit down her throat and the risks involved in trying. The only other option was to give up and giving up wasn’t an option. 

We were not going to give up on our girl. Ever.

We learned that when a baby is born they enter a honeymoon phase for three days. Premature babies enter a fight or flight phase, not only not realizing they are outside the womb, but also working overtime to live. Once their bodies realize they have been born, reality hits.

While Blakely fought for her life, Blake fought his own battles. During the few days when I was unalert and medicated, he would go to the garden in the hospital’s atrium. He prayed and worshiped,
declaring a Hallelujah over our baby girl. 
I’m gonna sing in the middle of a storm.
Up from the ashes hope will arise.
Death is defeated. The King is alive.

Worship walked him through those three days of darkness and beyond.

Once her lungs collapsed, Blakely was put on an oscillator breathing machine. 
The heavy pulsing air and nitric oxide kept her lungs inflated. 
Typically, babies are on this machine for 2-3 weeks.
Blakely was on it for three months.
She was also on full life support.

While we monitored her lungs, we also had to watch her oxygen saturation. We needed her to get to 95% in order to start bringing the life support down. If a baby is on 100% life support for 2-3 days, the hospital considers removing it completely.

Ten days after she was born, doctors were talking about removing her support. 
Doctors mentioned giving her the steroid shot to help her lungs develop,
but there were major risks and possible mental and physical impairments involved.

Meanwhile, God was working in Dr. Berwani so that He could work through him.

Dr. Berwani later told us that on his first day back on shift,
the same day they were considering removing life support.
He felt the Lord telling him that today was going to be different.
He said God told him, Keep pushing. Keep giving support in Pod D.
No matter what comes today, don’t give up.

He was part of a team of ten doctors that met to review Blakely’s case before coming to a decision.
The consensus was nearly unanimous: There was nothing else to do. They had tried it all.

The steroid shot was suggested again, and we were ready to try.
We knew that not trying wasn’t an option.
We knew that if she was living, she was living.
We knew that we were going to keep fighting for her.
We knew we were not going to give up on her, ever.

We signed the liability papers and she went back for surgery to place the PIC line.
After two hours, her oxygen had gone from below the 70’s to 92%. This was a miracle for her.

For the next four months we gave steroid shots, monitored, and waited.
We started doing routine brain scans to watch her blood vessels. Because her brain was smooth at birth, it was possible that her blood vessels would rupture as the waves in her brain formed. She had a few grade 3 brain bleeds that caused her to have seizures. This was just one of the many setbacks that we worked to overcome. 

When Blakely was 7 weeks old, we finally got to hold her.
Those brief moments strengthened the hope we were clinging to.

She was able to get on a C-Pap machine from month 3-6, and finally reached gestation at 6 months old.
We were hopeful as we saw progress, but knew that she still had a long road ahead of her.
She never learned to suckle, so we used an NG tube for feedings. 

We finally got down to 40% life support when Blakely developed a staph infection from an IV placement. The infection caused her lungs to collapse again. This setback put her life support back up to 65%. 

A few weeks later, still at 65%, doctors were discussing a tracheostomy.
This is where Dr. Berwani’s fight for our girl really began. 

He knew that she would be able to go home with minimal support. He had a peace about it, and he pushed for doctors to hold off on inserting a trach. He fought for Blakely while she continued to fight for her life.

He wanted to wait. He had vacation scheduled for the next four weeks, so he wrote a care plan that gave Blakely the time she needed to progress on her own. He had faith that by the time he returned things would be different.

His faith to wait changed things for us. 

By the time he was back, Blakely’s g-tube was placed and healed. Her c-pap machine was on the lowest level you go before you can be discharged. We were one step away from going home. 

He saw our progress and got us transferred from the highest NICU level down to a level 2.
Now, we just needed to find the right oxygen setting for us to bring our girl home. 

Typically the maximum you can be discharged with is ¼ liter.
Because the doctors saw our efforts to learn and be as involved as possible, we were able to go home on 1 liter. It would likely have been another 3-4 months if we waited to get to the ¼ liters.
We agreed to go to Houston once a week for checkups,
and finally went home after 230 days in the hospital. 

Blakely’s healing has been slow and steady. 
We learned to give her time and to give God time.

At 8 months old, Blakely couldn’t sit up or roll over. She had no fine motor skills. Because of her staph infection, her left arm was immobile. She was a happy baby, but she was developmentally behind. She had 24 hour home health services and was on 13 medications. We had, and still have, appointments with OT, PT, and speech therapists twice a week in our home.

We saw that she was working hard but couldn't seem to close gaps, so we decided to try something different. We started going to Dr. Kyle Daigle twice a week for red laser therapy. This is a natural healing process focused on brain development and going back to the basics. Blakely was able to gain some of her primitive reflexes that she had missed developing like sticking her tongue out, closing her hands, rolling over, and sucking. This allowed her brain to reconnect the dots in her story line of life. We did this for a year, while also going to Houston for pulmonology, cardiology and other specialty appointments. 

As a family, we worked the plan and allowed her to grow.
We took one step at a time on the path that we had found ourselves on.

We are slowly able to remove medications and start new supports.
Blakely is currently 6-8 months behind and still feeding from a g-tube.
She wears ankle braces to support her muscle development. 

We are letting her lead the way, supporting her every step of the way.
We didn’t give up then and we won’t give up now. 
We have watched God work in the 1%. 
We have seen His miracles. 

There were many days that we were told it would be Blakely’s last, but even then, we praised.
We realized that no matter what, we had God and our faith.
We had each other, our family, and incredible support.
We had a deep peace that was unfathomable.
We figured it out one day at a time, leaning on God.

Blake was truly our rock during this journey.
He was fully present and involved in her healing.
He would go to the NICU to pray over Blakely often.
He knew that God had a plan and purpose for her life.
He started updating on social media using the tag #SheIsSheWillBe
and reminded me daily that God was greater than all our ups and down.

Blakely was born at 24 weeks old, in Room 24, on May 24th, at 2:24, measuring 24 centimeters long.
24 in the Bible represents God’s power, authority, and strength.
Isaiah 14:24 says, The Lord Almighty has sworn,
“Surely, as I have planned, so it will be, 
and as I have purposed, so it will happen.”

God planned this life for us.
So it is.

He planned this path for us, and He promises to walk down it with us.
This path has been heartbreaking, but we are healing.
This path is full of His peace and a greater purpose.
This path is paved with grace.
This path leads to victory.

Blakely will live to bring God glory.
She will be a mighty force for His Kingdom.
She will be bold and courageous.
She will be. 

When our second daughter, Seshyn, was born premature, we were ready. Our faith was ready.
We stood firm in the promise that God would see us through.
We knew that no matter what, God was by our side.

Sehsyn was considered a “feeder and grower.”
She stayed 56 days in the NICU until she was strong enough to go home.

We still don’t know why both babies were born so early.
The best guess is I have some form of Lupus that only presents itself during pregnancy.
Lupus runs in my family, but I only show the markers when I am pregnant. 

From the beginning, Blake and I knew we wanted a big family.

We know that we are not done growing our family,
but we are trusting God to grow us His way..
We will cling to His Word.
We will wait with faith.
We will bring Him glory.
We will be.

Because of the work that God did in and through Dr. Berwani, he has now brought his NICU knowledge to a third world country. He has saved over 300 kids because of what he learned through Blakely’s case. 

Blakely’s life has done far more abundant things than we could ever imagine.
Her story has just begun.
She is. She will be.