It has been a while since I have written. Often I have thought about carving out the time as I do so enjoy struggling through my thoughts, making them palatable to the interested reader.
Yet, since the last post, people’s hearts who are close to mine have been run through the meat grinder. Consequently, I can’t seem to find a topic suitable for contemplation. Most categories rub as trivial when weighed against a human life, a baby’s life.
So, maybe, with the permission of my dear niece and nephew, I will share their personal, recent meat grinder experience. Because, I saw God there. I felt the God of Angel Armies in goose bumps while surrounded by family digesting the words spoken by the uniform in the NICU that our new little family member was not going to live.
Truly, I am weak. A frail faith is encased in this orange headed six footer. Moments like these strengthen the scaffolding of my belief structure by proving (AGAIN) His existence to me, unfolding His truth in new ways. The truth that He is here. He does Love us. He does intricately care about His kids. I would never ask for trials like these, but I am thankful for them.
Here is their story and the story of their daughter Mia Grace, known in our family as Miracle Mia.
It began at 22 weeks. An ultrasound to check why the swollen belly was measuring small, fluid level and fetal movement had decreased.
Every female who lays on this table loathes that look from the medical professional standing bedside. The re-measure, the second glance at the numbers in the file, the, “we better take another look” wrinkle on the brow. Days later another ultrasound revealed that my niece’s second pregnancy may very well not yield a living baby. The doctor stated that the once healthy and growing little girl was very small and had only a sliver of one kidney which was failing. This expert said she would make it to about 32 weeks in utero.
In disbelief and shock, we began to cry out to God.
Weeks later a third ultrasound was performed to see how the little patient was fairing. Praying for her the day before, I was reminded of God’s word ZOE used 135 times in the Bible. I love the depth of this word in the original Greek.
ZOE: the absolute fullness of life; real life, genuine, a life active and vigorous, devoted to God…it always (only) comes from and is sustained by God’s self-existent life (portions of the Greek definition)
I wanted the reminder of this rich word to be a promise that this precious little girl would LIVE and LIVE WELL. But God doesn’t seem to work that way, meaning in a way that is humanly predictable. Abundant, overflowing, ZOE life could be a promise in so many DIRECTIONS, so many DIMENSIONS.
Nevertheless, stopping out at the family homestead the morning after the appointment, I was elated to hear the news that a decent sized pocket of amniotic fluid still existed, her small, dark, abnormal kidney was functioning, and her little body was growing.
Fast forward to 38 weeks of pregnancy. She was alive but beginning to struggle. Minimal amniotic fluid led to a scheduled induction. On Thursday, January 8th at 5:15PM, she was born. Research for a special name yielded these two powerful words:
MIA: ONE WHOSE WISHED FOR
GRACE: UNMERITED FAVOR
Four pounds and breathing Mia Grace came. Medicine decided she needed a ventilator. Testing began to see if she was healthy enough to make the trip to Denver to begin dialysis. The first X-ray revealed one lung had a hole while the other was struggling.
We stood, sat, paced, cried, and PRAYED.
I prayed words I am not certain are legal to pray to the God of the Universe, words like “I demand…”.
Forever embedded in my memory is the image of Grandpa Matt standing over a precious, wide eyed Mia with one construction weathered hand cupping her infantile head while the other held an IPAD (Bible app open) praying. The perfect grandpa.
The second X-ray summoned the family together into her tiny NICU room. Her lungs were ruined, filled with holes. She could no longer breathe on her own. She was too sick to be considered as a candidate for her only shot at life with one weak kidney. Sympathetically, the staff relayed to my niece and nephew it was time to hold their baby and say goodbye. The sob that came from this young, beautiful mom who just bore this delicate gift physically moved an organ in my chest. EXCRUCIATING.
Grandpa didn’t believe it. The night before he had had a dream. Mia would be born, there would be issues, but she would be fine.
Our loving Abba Father who hems us all in had also given confidence to one of Mia’s aunts. Praying faithfully for her from the first devastating ultrasound, the aunt felt the Lord had given her a confidence she would be OK. So resolute her assurance, she was ready to throw a baby shower.
Sitting there, absorbing all the medical diagnoses being given, one aunt to this baby girl was encouraged by the One who cares in her prayers that long night by Exodus 14:14 which breathes:
“The Lord will fight for you while you keep silent.”
For aunt #4 (I married into a marvelously massive family), the prayers for her brother’s family began a year ago. She felt the Lord impress upon her that her brother and sister-in-law were going to walk a really hard road. He loved them enough to start the prayer covering months before they were to sit in these chairs in this anguish.
When my husband and I left, the staff was about to unhook Mia from all medical devices. The chaplain had left fulfilling his commitment of soothing words. They were ready to bathe her, clothe her, and take her final pictures. She was given 15 minutes to live.
At home we couldn’t sleep. My husband and I cried. We prayed. I kept checking my phone for the text, “She’s gone.” Hours later, in the black of our bedroom, my husband began to pray,
“Lord, just make all things new in that little girl.”
“How is she?” I text.
“SHE’S STILL BREATHING!” blinked back.
Other astonished messages went out to loving family members…
When medically all hope was gone, Mia Grace was placed on her momma’s chest. Then her daddy’s chest. Then her aunt’s chest who continually sang over her, then a friend’s chest, then her grandpa’s chest who prayed. And the rotation began, holding, singing, praying all night long.
Then God did His thing.
Twice the doctor was sent for by the family asking for Mia to be reevaluated as she did not seem to be dying. On the contrary, she looked like a completely healthy newborn. The doctor disagreed stating that any reevaluation or assistance would only prolong the inevitable and that it may take up to 24 hours for her to pass away.
At shift change, it was time to convince a new doctor to take a fresh look at a living, breathing baby. He showed fatal X-ray #2 from the previous night to the family proving Mia’s lungs were incapable of supporting life. But she was breathing all on her own.
Reluctantly, he reevaluated her with a blood gas test.
Welcomed back into the room the extended family met the eyes of a tearful doctor. What he saw in her file did not match the new round of tests-which were perfectly normal. My niece and nephew said they will never forget the look on that doctor’s face. Mia now had lungs, fully functioning lungs. Throughout the night, God gave her new lungs.
He makes all things new.
An aunt humbly questioned the stunned professional, “Do you believe in miracles, Dr.?”
“Sometimes things happen I can’t explain,” he confessed.
New lungs jump started the doctors into action. Approval from Denver Children’s Hospital bought Mia her first airplane ride. Squeezed into her NICU room one last time, we sang the Doxology and prayed. We praised God for allowing us to keep her.
As she flew away and I drove home all I could pray was, “Lord, heal her up and bring her home.”
Mia landed in Denver with her dad weighing about 3.5 lbs with new lungs and one presumably failing kidney. Her first round of tests lended a creatinine level of 5+. This level, along with her potassium and BUN levels, would indicate when dialysis would need to begin. Her creatinine level was very high (1 being a normal level), but not high enough to begin dialysis.
The waiting and praying continued.
Over the next few days I kept thinking about the description of Epaphras’ prayer life in Colossians. He loved the people so much that he labored earnestly for them in prayer. Night and day he prayed for them. His concern didn’t cause him to shoot up arrow prayers while going about his business, it seemed he made it his business to lift up his friends to the foot of the cross consistently, thoroughly. I also thought about the many verses written about how I should pray so that He would hear my cries, because especially now I wanted to be heard.
A few days later it was decided the family at home should gather to pray over Mia on Face Time. After four days in Denver her levels were slowly dropping, but she was still considered weak medically with only one small kidney. Sitting together waiting to make the call on the computer, an aunt’s phone registered a text. It was from Mia’s grandma who was in Denver. Astoundingly, an ultrasound anounced two kidneys. Many ultrasounds and tests over the months showed one small, dark, abnormal kidney. She now has two, not perfect, but two kidneys.
He makes all things new. AGAIN.
Unbelievingly, we exchanged looks unable to hide smiles and tears. Was this all actually happening? Could it have been a medical misdiagnosis? The nephrologists believes so. They cannot believe that a newborn with nonfunctioning lungs can have new lungs nor do they see that she who once had one kidney now has two. However, despite their doubt, the rest of the professionals monitoring Mighty Mia knew these were miracles. There were no scientific answers for what they were witnessing.
We prayed over that sweet little face on the computer screen thanking God for all He has done and asking Him to do even more, to heal her up completely and bring her home. And we prayed for all who come in contact with Mia that they would also encounter a living, caring God who loves them as much as He loves her.
Psalm 118:17 was beautifully written and taped to her crib which declares,
Mia spent three more weeks in Denver. During that time an official diagnosis of her condition was given. In her medical charts, it reads that Mia Grace has a small deletion on the short arm of her fourth chromosome known as Wolf-Hirschhorn Syndrome. This missing genetic material can result in severe developmental delays, and may include a variety of other birth defects. It also states that she is deaf. I pray that these two titles will only ever be words on paper never manifesting in her life. I am praying God continues to make all things new in her. He has done it with her lungs and kidneys, now we ask for ears to hear-first His voice then all other voices that surround her throughout her life.
At the end of her first month of life, Mia Grace was strong enough to come home. The day before she left the hospital she was examined by a myriad of professionals. One of whom was a woman who walked into the room and felt peace. She looked at Mia’s grandma and said she knew Mia was going home to a loving, peace filled home where she would thrive. Her words sent a wave of calm washing over hearts filled with anxious details about how to care for Mia at home.
And now she is home with her family.
Her journey is not over, INDEED IT HAS JUST BEGUN.
So, to all of you who bowed a knee before the throne and handed Mia Grace Kennedy up to Jesus in prayer, WE THANK YOU WITH ALL WE HAVE WITHIN US.
To all of you crying out to God right now, begging Him for answers to your heart wrenching present situation, please know we would love to pray for you right now too.
We pray the God of Angel Armies reaches down,
lifts you up,
places you in His lap,
spreading His protective wing over you while He speaks His love and Truth into your ear.
Below is a song that brought peace to my soul causing my thoughts to reorient to True North each time new information led me to doubt. May it comfort you as well.