Perfectly Paisley Grace

Paisley's Story

Dearest Friends,

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          "This is the choice before us: either try to revolutionize the world and break under it or revolutionize ourselves and remake the world." 

-Bishop Fulton Sheen

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          Paisley Grace Croghan was born June 3, 2017. Her labor, start to finish, was less than 3 hours. She was ready to enter the world despite being nearly 5 weeks early. Her body was so tiny when they laid her on my chest and we later found she weighed only 4.5 pounds at birth. The nurses patted Paisley gently at first, encouraging her to take the first breaths. When she didn’t, the room’s climate changed and she was rushed out of the room. Assurances were given that it was completely normal for premature babies to have some issues with their lungs but not too worry, so we didn’t. We waited eagerly and excitedly to properly meet our little gift.

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          After a long time we were greeted by the attending pediatrician. His demeanor was light and so we anticipated good news, but what we received was much different. He started saying things like “possible genetic condition” and “chromosomal abnormalities.” Her condition was not stable at the moment, but he urged us to consent to an ambulance transfer to the Children’s Hospital at Stanford. We suddenly realized that something was wrong, very wrong. In shock, uncertainty, and tears we agreed and he left the room.

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          The nurse asked if we would like to see Paisley before she was transferred to Stanford and she walked us down the hallways of the hospital. It was an experience we will never forget. We were hardly able to see her face or body through the wires, patches, and tubes. She looked so tiny, so vulnerable and helpless, but in all honesty, Paisley was the most beautiful thing we had ever seen. We were afraid to touch her, to somehow cause her more distress than she had already endured. When the nurse asked if I wanted to hold her I was afraid, but of course I wanted to hold my baby. I fell in love with her instantly and I could feel her presence, her desire for life, and her fighting spirit. I knew that embracing her now would mean facing the devastating truth that we might not be able to keep her.

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          The next time the doctor spoke to us he had more challenging news. He told us Paisley would need to be placed into an induced hypothermic state for the next 72 hours, in hopes of preventing any brain damage that might have occurred from lack of oxygen after birth. She would now be exposed, wearing nothing but a diaper, her body cold and limp. Our hearts were broken for her and we constantly fought the urge to swoop her up and swaddle her in the warmth and comfort of our arms.

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          During the next days at Stanford Paisley was monitored and tested constantly. She had x-rays, ultrasounds, blood tests, MRI’s, EKG’s, EEG’s. If you can name it, she had it done. The doctors suspected a genetic condition to be the culprit for Paisley’s respiratory distress. She had been intubated (a breathing tube placed) since birth and using a ventilator to breath for her. Twice the doctors tried removing the breathing tube, the first time she lasted nearly 12 hours before she tired out. The second time was much shorter. She had to fight for every breath and was simply not able to maintain on her own.

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          After 3 weeks of tests and attempts of extubation (removing breathing tube), the doctors scheduled a meeting with us and all the teams of specialists working with Paisley. Nothing could have prepared us for this meeting or for the inevitable crushing decisions we would have to face. They broke down the meeting by specialty and the neurology team delivered the first blow. Paisley’s MRI was abnormal, she is missing parts of the brain and other parts were undersized. Then a cardiologist explained that an ultrasound of Paisley’s heart showed 2 large holes, a congenital heart condition that puts her at risk for heart failure within months without open heart surgery. The NICU team suspected that Paisley would never be able to breathe on her own and that she might be ventilator dependent for life. They recommended, if we chose, that a tracheostomy (an incision into the trachea) and g-tube (tube into the stomach) would be necessary to support Paisley’s life. The genetics team told us that Paisley’s condition is incredibly rare (as in they have never seen it before so it has no name) and is the culprit for all of the challenges she is facing. They would be requesting a chromosomal array of Paisley’s genes to determine exactly which chromosomes were affected.  Ultimately, with all these medical factors in mind, Paisley would face severe developmental and cognitive delays and might never meet developmental milestones. She probably could not see anything beyond shapes and shadows and was likely to have hearing issues.  Overall, the prognosis was not good and that is an understatement. The prognosis was we would likely never take Paisley home. She would be sent to a sub-acute care facility for months, possibly years after her tracheostomy and g-tube were placed. They insisted that they would work with us through every decision. Paisley’s status would constantly be changing from day to day, and nothing is ever certain. We believed that. They truly wanted what was best for Paisley and for our family, but we also felt that in some way we were being told that IF we decided to do nothing, that was ok too.

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         But it isn’t ok with us to do nothing. Our daughter is loved and wanted, perfectly designed by God to be exactly who she is. We know that our daughter had and will suffer. We will suffer along with her, but we also know that she has a purpose far beyond her medical diagnosis, far beyond what we are even capable of understanding.

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          At one month and five days old, Paisley had her tracheostomy and g-tube surgery. It went well by all accounts, but sending your newborn to surgery and having her body manipulated to support her life is heartbreaking. She was placed back on the ventilator, now hooked up to her trach and seemed much more comfortable in comparison to having a tube in her throat. For the first time since she was born she seemed to be comfortable enough to just be a baby. It was beautiful to watch her be able to look around the room and take in her surroundings.  She quickly surprised the doctors by not needing the ventilator support that they had expected. In fact, she was breathing over the ventilator. They decided to push Paisley and see exactly how much she was able to breathe on her own. They changed the ventilator settings to CPAP (continuous positive airway pressure) which won’t provide artificial breaths, but rather support the breaths she would make on her own. She surprised everyone by remaining completely stable, essentially breathing on her own! We were filled with the one of the purest forms of joy we had ever experienced.

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          The doctors began to wonder if she needed such low breathing support, could she manage with a mist collar (a continuous flow of humidified air over her trach). This is a huge deal because it means we could manage Paisley’s care at home, eventually. I felt pure joy watching them transfer her to the mist collar, she basically slept through it and never even noticed! Our baby girl was surprising us and everyone around us at every turn! In late July I held Paisley for the first time without wires and tubing, and it was one of the best moments in my life.

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          We were told that Paisley would never see and she can! We were told that she would be hearing impaired and she isn’t! The doctors predicted Paisley would be vent dependent for life and she’s not! It has been one of the greatest honors of our life to witness through Paisley how great and powerful our God is! We were brought to our knees and given an impossible scenario with impossible choices. When there is nothing left to hold onto, faith remains. God loves unconditionally and perfectly. He requires a “YES!” to remaining faithful through suffering and pain, however unfair. He demands a “YES” even when we don’t understand why, and may never understand. His ways are not our ways.

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          Paisley has stirred up the hearts of many throughout the nation, local and national parishes, and even a religious order in Calcutta. She teaches us to be grateful for every breath. She teaches us to soak in every precious moment we have with our children and to be vulnerable. Be vulnerable in love and hold on to love at every opportunity. We have marveled at the prayer warriors we have witnessed and continue to be in complete awe of the outreach we have received. Paisley has opened our eyes in a world that works hard to keep them shut. A world that strives to keep us comfortably numb. Mother Theresa said “I’m a little pencil in the hand of a writing God, who is sending a love letter to the world.” We believe that Paisley is God’s tiny pencil, and what a beautiful love story she is writing.

                                                        Yours in Christ,

                                                           Anna and Paul