Faith in the Fear

“I will say of the Lord, ‘He is my refuge and my fortress, my God, in whom I trust.’” Psalm 91:1

I read these words in a frantic whisper as the noise of twenty people saving a baby’s life swirled around me with “code white, code white, code white” ringing in my ears and overhead. The baby was mine and so was the terror- a fear like I had never felt; where I shook from the inside out and struggled to breathe; where I tried not to imagine a world without my Haven.

“God save my baby. Jesus heal my baby. Please don’t take her. Please don’t take her.”

When you are lying on the hospital floor, desperate and afraid, you find out where you put your trust. As amazing as the doctors, nurses, and respiratory therapists were who performed an emergency intubation on Haven when her lung collapsed, I knew the only One in control was my Father- Haven’s Father- our Father. He moved through the medical team to provide breath in my sweet baby’s lungs.

The doctor gave me news that she was stable, but sedated and on a ventilator and that the team would be working on her settings for a while. The hospital chaplain put her arm around me as the shaking subsided and I read Psalm 91 over and over again until my husband came running through the door.

‘Because she loves me,’ says the Lord, ‘ I will rescue her; I will protect her, for she acknowledges my name.

She will call on me and I will answer her;

I will be with her in trouble,

I will deliver her and honor her.

With long life I will satisfy her and show her my salvation.’”

After that, I remember looking at the ceiling… and waking up in the middle of the PICU busy-ness four hours later. When I handed my trust over to the Lord to save my baby, and to my husband to keep watch of her, my body rested without my even giving it permission.

The three days that Haven was intubated and sedated were long and empty as I stayed by her side, yet with no interaction from my fun baby girl. She had a PICC line inserted, IV’s and tubes- the sight of her hurt my heart.

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The doctors urged us to run tests to rule out underlying reasons for her Hypotonia that could be leading to a weak cough, and thus the hospitalizations. This is when the fear became even worse for me. In my fragile state, I felt I couldn’t handle hearing that anything else was wrong with my baby. I didn’t want to test for anything- “let’s only deal with the task at hand for now.” Thankfully, through the wise counsel of doctors, nurses, and my husband, we started the process of elimination. Our Pediatric Intensivist wrote what we were dealing with on the window:

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First she had an Echocardiogram. Her heart looked beautiful, (Praise God!), but a bronchioscope was needed to rule out a possible problem with the aorta. All clear!  Her leg with the PICC line became cold and so an ultrasound was needed to look for a blood clot. Nothing to see! The Echocardiogram revealed a huge cyst on her abdomen. Many prayed with us that it would be healed and gone when she had her CT Scan…

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Guess what? The cyst that we have documented photos of WAS NOT THERE. The radiologist, PICU Intensivist, and GI Specialist had no other explanation than the fact that it was gone. I enjoyed telling the radiologist that we had prayed for it to disappear. “Well, ‘somebody’ heard your prayers,” he replied.

In the middle of the storm, we witnessed a true miracle- one for which we give Jesus ALL of the glory! We also experienced His love through an unbelievable outpouring of care, concern, generosity, and encouragement from family, friends, and even people we don’t know. It continues to be emotional and humbling to witness the goodness of others. I will never forget what has been done for us.

It took three days for Haven to really come out of the blur of the sedation and she was given a neurological exam and swallow test and had blood drawn and sent to genetics in regard to her muscles. With each test she passed, I exhaled and took another breath to keep running this race of endurance. There was no need to fear. God is bigger than any test or ailment, and no one could tell me anything that would make me love my Haven Elizabeth any less.

Seeing her so lethargic was worrisome, so we made a timeline of what she had endured. I could hardly stand to remember that she had vomited for 10 days straight and was not able to eat for the two days prior to her intubation due to her intensely rapid breathing. Though she had IV fluids a lot of that time, she was malnourished and so  weak.

Cuddles, nursing, and food gave way to the bubbly Haven we know so well, and smiles on all of our faces.

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Living in the PICU for eleven strenuous days, we became part of a family of incredible caregivers who truly blessed our lives in an intense and unique way. We are forever grateful to them. On January 29th we tearfully said goodbye, and Haven’s homecoming was joyous. Our older three children cheered as she came through the door.

While in the hospital, I had thought a lot about a family that I don’t know but have prayed for since 2013- a baby born with many illnesses who has spent an equal amount of his life in the hospital as he has at home. He was intubated at the same time as Haven all the way across the country. The day that we  brought Haven home, Mason went home to be with Jesus.

Why do I get to rejoice while another mother mourns? I don’t think I will ever know the answer on this side of heaven, but the impact that both babies have had on my life is even more than I can process right now. I will never be the same.

Thank you for all of your love and for being Christ’s hands and feet for our family. God has shown His incredible grace and mercy to us in so many ways and through so many faithful servants.

“I always thank God for you because of his grace given you in Christ Jesus. For in him you have been enriched in every way- in all your speaking and in all your knowledge- because our testimony about Christ was confirmed in you. Therefore you do not lack any spiritual gift as you eagerly wait for our Lord Jesus Christ to be revealed. He will keep you strong to the end, so that you will be blameless on the day of our Lord Jesus Christ. God, who has called you into fellowship with his Son Jesus Christ our Lord, is faithful.” I Corinthians 1:4-9

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