{Turning tragedy into thanksgiving} Sophia’s story |Part I|

Written by: Mandy Hill

It was the day before Christmas. It was 5am. It was the first day of my 32nd week of pregnancy.

…and I was in labor?

My shock absolutely outweighed my coherency that Christmas Eve. My pregnancy had been perfect up to this moment. I woke my husband and shared with him that I believed I was in labour, and we were soon on our way to the hospital.

Everything seemed to flow in a blurry hurricane after that. After a quick assessment in OB triage, we were whisked away to the high risk unit and a short two hours later our beautiful princess: Sophia Isabella-Diane, was born.

Christmas 2009, needless to say, became our most special Christmas to date.

Immediately following Sophia’s birth, she was taken to the NICU. My husband was not given the option to cut the umbilical cord. We did not even have a chance to lay our eyes on her, much less our hands. She was immediately assessed in the NICU, failing her APGAR test, and began monitoring by a 1:1 nurse/patient ratio. A couple hours after delivery we were brought in to meet our brown-eyed, blonde haired, beautiful little girl.

I do not remember experiencing fear or worry; not for even one moment. God was incredibly gracious to pour his peace into our lives in an abundance; not giving worry, doubt or fear a sliver of a chance to take root.

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After lunch on that Christmas Eve my husband began to make arrangements for others to fill in his responsibilities at our church’s Christmas Eve service that evening. (He’s a pastor) While he was making several phone calls, the neonatologist on duty at the NICU made his way over to my hospital room to see us. Again, we didn’t suspect there was any need to worry, so my husband actually continued with his calls and actually made the neonatologist wait!!! Little did we know he had come to see us to have us consent to her being intubated; because she was ‘simply working too hard to breathe on her own.’

For the next week she remained on the ventilator and we were only allowed to ‘see’ her. The odd nurse would encourage us to gently lay a hand on her back, but most encouraged us to refrain from any touch at all as it seemed to agitate her. Not being able to touch or hold your brand new baby for seven whole days after delivery is absolutely dreadful.

That first week was intense in many ways. Sophia endured many tests and procedures as they tried to pin point infections, and solve the mystery of her early and very sudden arrival. I was incredibly emotional as I watched the numerous pokes and prods being performed on this tiny blessing.

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Finally, on New Year’s Eve 2009, my baby girl was placed into my arms. That morning she was extubated, and after a few hours given for her to rest I was finally able to hold her. She was downgraded to CPAP, so the wires and cords were still plentiful, but I savoured every single moment of my time with her. My heart was still steady, and my faith was still strong in the God of miracles.

Some say it doesn’t rain, it pours.

We found this saying to be quite true during Sophia’s first few months. Mid-January, I woke up one morning with severe pain in my stomach. I saw a Dr. at a walk-in-clinic who diagnosed me with a UTI, however, we quickly decided it was much more than that. My husband ended up calling 911. After an ambulance ride and a few tests at the hospital; it was confirmed that my gall bladder was full of stones and I would need surgery in the next few weeks in order to prevent any more attacks from happening.

My husband also had medical issues of his own. While completing the painting of our daughters nursery one night, he too had a trip to the ER where he learned he had arrhythmia; a condition where the heart produces an irregular heart beat.

It seemed like every ‘storm’ was directed at us over those months….

Slowly but surely, our girl overcame many obstacles. More infections, more setbacks than my heart really new how to handle; but slowly progressing to the point where the management of the unit invited me to stay in one of the ‘care-by-parent’ rooms. She had moved from an isolette/incubator, to a crib (wire-free) and looked like a beautifully healthy baby! This was so exciting for us as we had come to learn that you were only invited to stay in those special rooms when your baby’s homegoing was near!

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The morning I was packing to stay overnight, I received a phone call from Sophia’s nurse in the NICU. She was calling to ask me to come in immediately because just a little earlier Sophia had coded during her feed. Say what?! My beautiful wire-free, ready-for-home baby girl CODED?! Her nurse informed me that she would be back in the isolette when I came in and that they had moved her to an area where she would be back to 1:1 care.

I think for a few short moments, I too, stopped breathing.

It was at this point in our journey that I allowed doubt, fear, and worry to slowly creep in. I remember thinking, “Will she ever get better? Will she ever come home?” I called my hubby and together we left for the hospital, unsure really of what to expect. On the way there I remember texting my dad and worriedly sharing my fears with him. “Just pray, Mandy. Don’t worry, pray.”

I tucked those words into my heart for the rest of the journey.

It was about three weeks after Sophia’s code that we brought her home from the hospital. We were being sent with an apnea monitor that would help us monitor her oxygen saturation from home. (She de-sated often).

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On the day of discharge Sophia also had a test on her bladder/kidneys called a VCUG. This test showed she had a grade three VUR (vesicouretal reflux). We were told that a hospital in London, Ontario (2 hours away) would be calling us with an appointment to see the paediatric urologist there. We spent a total of 51 days in the NICU. The doctors and nurses felt like friends now, but we were so excited for our friends and family outside the NICU to finally be able to meet our precious new daughter.

Just four days after we brought her home I noticed Sophia was starting to sniffle. We decided to stay in and cancel all our plans for the remainder of the week. On day five of us being at home from the hospital Sophia stopped breathing at home, turning a scary shade of icy blue. Terrified, we called our friends from the NICU and asked what we should do- they paged the on-call neonatologist and told us to meet him at the hospital. Minutes after the Dr. saw her we were being ushered back into the isolation part of the NICU. Sophia’s new diagnosis: RSV & pneumonia in both lungs.

Here we go again.

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Back at the NICU Sophia endured more tests and procedures. I was feeling so weary, in addition to feeling disappointed that our family was being separated yet again. I didn’t think I could handle watching this poor little girl endure one more thing; yet God supplied just the exact amount of strength I needed for each and every moment.

Finally, on my 26th birthday, after 11 more days in the NICU, moving our total days spent in the NICU up to 62; we were discharged. Again.

This time I was a bit neurotic about hand washing and who I allowed to touch/hold our daughter. Over-protective was an understatement! However, if I could help it, no more illnesses would be sneaking by me and targeting this new little one.

A few months later we headed to London to meet Sophia’s urologist…..

This is where I will need to end the story for now. Check back tomorrow for part II of Sophia’s story!

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