HoPE(ing) for the best. Preparing for the worst

As I shared in our introduction, that day we found out our daughter Hannah had some severe medical complications, our lives went upside down very quickly. All that information seemed like a blur. I remember we even went and got new iPhones after that appointment. I think part of it was to distract ourselves from our feelings.

A few sleepless nights later we really started to rationalize the information we were given. I remember thinking to myself “OK, what’s our game plan? what do we know?” and reflecting on it…we didn’t know that much. Shellys childhood doctor and plastic surgeon had always commented on a genetic disorder called Holoprosecephaly, and inferred that my wife had a sort of microform of the disorder that didn’t effect her brain, but just caused the midline clefting in her lip and palate.

Both my wife and I are rather intelligent people, we had finished college years earlier and Shelly was finishing up her Masters degree in Educational technology. In short we turned to the internet and research for our answers. we began googling Holoprosencephaly (HPE for short) what we found was both scary and overwhelming. pictures of horrible disfigurations, cyclopean children, proboscis type noses, still births, premature births, it was shocking to say the least. I remember fearing is this what our daughter is going to look like? and remembering the Doctors words “Not compatible with life.”

We read. endlessly. We tried to keep things lighthearted. part of me was hoping our next doctors visits would go better than planned. Maybe our worst fears were not coming true, maybe some miracle happened and her development progressed and she was out of the woods. I help onto that HoPE for dear life. we planned the baby shower. we read “what to expect when you’re expecting” we shopped target and bought all the baby things we could ever really need. Shelly started that nesting instinct and went to work preparing Hannahs room. painting and decorating. cleaning and organizing the house.

The holidays provided a brief reprieve as its my busy season at work, and all the holiday festivities provided just the distraction we needed. our family who is incredibly supportive of us, kept us busy and forward looking.

At the start of the new year we had another diagnostic ultrasound. doubly confirming our suspicions and once again getting the bad news “I’m sorry but your child may not live to birth, or will pass shortly after” Devastating. I remember saying to Shelly “We will see this through, these doctors don’t know everything yet. we are not giving up.” we pressed forward.Our OBGYN visits were just run of the mill. knowing the complications we faced, our doctor was supportive and focused on my wife’s care and health, and let us hear the heartbeat of our daughter, and feel her moving around.

weeks passed and our due date drew nearer. we made our plan to deliver at our local hospital (a decision we later regretted) and made all our arrangements. we had an approximate due date in early March. little did we know that Hannah had other plans.

Shelly started experiencing swelling in her extremities and high blood pressure. we went to the OBGYN and they diagnosed her with preeclampsia and our Doctor decided it was best that we go ahead and induce the next day. we made the calls, checked in with our family, and headed to the hospital. It was the moment of truth.

Arriving at the hospital, we were checked into our room, Shelly was hooked up to monitors for her and the baby, and she was given the medicines to begin her labour. We had dinner, If I recall correctly Shelly wasn’t extremely hungry. her dilation started and we tried to rest between contractions. I remember Shelly getting up to use the restroom early in the morning. and she said she felt like she had to “poop” well Sur eenough my mother-in-law who was helping her said, nope honey that’s your baby on its way out! The nurses came rushing in. the room went from quiet to extremely active in just minutes. They were telling Shelly to relax and not to push yet. They were trying to get our OBGYN in, but she was about 40 minutes away. they were desperately paging the on call OB who was also about 20 minutes away. perfect storm of an early morning birth. after many tense minutes the on-call OB showed up to start getting us ready. Our OB showed up a short time later just in time for Shelly to give a couple pushes, and into the world came Hannah.

It happened so fast. I remember seeing her slightly pale blue form as she emerged. to Dr.’s wiping her and suctioning her mouth/nose. that is when I first saw her eyes. they were a little larger than you would normally see and closer set. they swaddled her and placed her with Shelly to hold. we were able to give her a kiss, and a momentary snuggle, before they brought in the incubator and wisked myself and Hannah away to the NICU downstairs. The doctors and nurses attended to Shelly while I was charged with accompanying Hannah down to get weighed and assessed. After weighing her they put a nasal cannula on her and started her on her own monitors.

As I sat there staring at her, watching them probe and prod her, I started noticing the first of many complications we would face. she was having seizures. she was having a hard time keeping her oxygen saturation up, and she was breathing very shallow and unevenly. The nurses asked me to wait in the waiting room adjoining the NICU as they further assessed her and brought in the neonatologist. I paced that room. sick to my stomach. finally they came and spoke to me and my father-in-law and mother-in-law. As we had know Hannah had very severe deformations in her brain as well as with her facial midline effecting her Eyes, nose, palate, and mouth. The doctor explained the felt she had trisomy 13 which is common in people with down syndrome. but we had a bit more of an idea through our research we knew it was Holoprosencephaly.

We were allowed in to hold Hannah. the doctors were not hopeful that she would live long. knowing the odds we were given the option to transport Hannah via ambulance to Winnie Palmer hospital in Orlando which had a NICU more suited to take care of Hannahs immediate needs. the problem was is that the ambulance was very busy. and we had to wait hours for an available team to get us. Finally, late in the afternoon they came for her. we loaded her into he ambulance, and put her life in the hands of the nurses and paramedics that staffed the fire engine sized ambulance. We followed soon behind in our own car. I remember having a couple conversations via phone with our family. I remember calling my boss, and trying to explain everything going on…my last words to her before hanging up “please pray for us.”

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