Raegan

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At 25 weeks pregnant, Miracle Mum, Ashley woke up with dizziness and blurred vision. She decided to jump in a cold shower to fix it. The next thing she remembers is waking up in the emergency room bruised and battered and with doctors trying to delay her labour. Her blood pressure was sky high and she had suffered a seizure in the shower. She shares the story of having to welcome baby Raegan into the world that day and the truly heart wrenching journey that followed.

November 17:
Our day began just like any other Saturday normally would. We slept in, ate breakfast in bed, and made plans for the day – the boring adult weekend kind-of-stuff.
Little did we know our whole world was about to change.

Dizziness. Blurred vision that just couldn’t be focused. The feeling that something was wrong but thinking perhaps it was normal pregnancy symptoms. Nothing I figured a cold shower couldn’t fix. Until I woke up in the Emergency Room at UC Irvine with no recollection of why or how I got there. My body was sore and already bruised, IV’s hanging out of both my arms which were strapped to the side rails, and a headache so bad I could barely focus.

My memory of what happened during the next few hours -days really- is relatively foggy due to the numerous medications they were pumping into my body trying to delay labor and lower my BP. Although it took a while to fully understand, I was told my blood pressure was dangerously high and I had a seizure while in the shower. Preeclampsia is what I quickly learned I was diagnosed with.

My husband saved my life that day. I thank God I don’t remember any of it, but pray one day he may be able to come to peace with what he witnessed and the actions he had to take to ensure I was still breathing.

After a long few hours passed, and no medications were successful in getting my BP to a safe level, my doctor decided the only way to save not only my life, but that of our unborn baby’s life was to perform an emergency C-section. The doctors told us, with a fair amount of confidence, that she was not going to survive.

November 18:
At 25 weeks 5 days, my daughter was born. 1lb 7oz. 12 inches long and immediately whisked away before we could even see her face. She entered this world in breech position and "en caul." All we knew was she wasn’t breathing. Emergently intubated so the ventilator could breath for her, and we had no clear idea of what the future would hold.

November 18 is a day that will forever painfully, yet beautifully, be engrained in our minds for the rest of our lives. The best and very worst day of my entire life.

A day passed, which seemed like eternity. I was left to lay in the hospital head-on pain, empty, lost and trying to comprehend and deal with a rollercoaster of emotions. My baby was in the NICU, out of sight and arms reach from me.

November 19, 2018:
I remember the first time Craig wheeled my chair to the NICU. My heart felt like it was about to pump right out of my chest. I didn’t know what to expect. He pushed the button outside the door. They asked who we were there to see and as they buzzed us in the double doors opened. There was incubator after incubator filled with tiny babies that were too tiny to see with all the blankets and equipment. It was incredibly busy, but quiet at the same time.

Seeing Raegan's micro-preemie body hooked up to machines and tubes and wires induced intense anxiety in me. It was a surreal moment that didn’t feel as though it belonged to me. My heart was so full, yet so broken. I could have never imagined how much love I would feel for her the moment she was born. That love transferred to pain. The machines, tubes and wires hooked up to my 1 lb 7oz baby was an incredibly painful sight. She captured my heart, so if she hurt, I hurt.

“You never know how strong you are until being strong is the only choice you have.”

This should be every NICU parents mantra. You truly find a hidden strength you never even knew you possessed.

The NICU changes you. Deep down to your core, it changes you. It tests your faith. It challenges your relationships. It gives you a priceless perspective on life.

Nothing could have ever prepared me for the first time I saw my baby’s face. I was terrified, sensitive to the noise, panicked by all the alarms that were going off and numbers on monitors fluctuating in a way that didn't make sense to me. I was so scared, I had no idea what was going to happen next, or what to expect in the days to come- if she did in fact live that long.  Motherly instincts are a powerful thing, and when you cannot act on those instincts your heart is ripped to shreds.
 
My biggest fear was losing our precious angel that we had waited so long for. Not knowing if she was going to live another minute, hour, or day, much less be "normal" if she did make it.... this was a torture I hope you will never experience. This was the worst pain we've ever been through.

Nothing is easy about the NICU – when there are bad days, they’re incredibly hard, and when there are good days, you’re only waiting for the next bad day. It’s not an experience any parent wants for their newborn or for themselves.

NICU means being separated from your baby, relying on strangers to be the main caregivers, worrying about your little one's suffering and long-term wellbeing, asking "permission" to touch your baby, and feeling helplessly lost trying to make sense of the new terms being thrown your way. All while watching from the sidelines, urging your little one to keep fighting and praying for the strength to carry on, all before you ever had a chance to bond and spend time with your own baby. 

Among the first emotions I felt were anger, sadness and fear... I was angry with my body for letting her down, I was sad thinking of the NICU road ahead, and fearful for her long-term future. There are no words to express what it’s like experiencing something so traumatic – nothing in the world can prepare you for the first time you see your little one in that plastic box completely covered in tubes and wires. Being unable to tell where they end and your baby begins is truly an overwhelming moment.

Little did I know in that first week how much my feelings would change by the following months. Until then, I cried entire days. Hormones, a baby taken too soon, not knowing our future, seeing her "suffer" getting poked, X-rayed, intubated, extubated, seeing her cry but never hearing her voice, just wanting to hold and comfort our baby that was too delicate even to be touched.

But I was also surprised by how grateful I felt.

I was grateful for every day that my girl was alive.
I was grateful for the time I had snuggling in the NICU.
I was grateful for Craig and his incredible strength and understanding through this journey.
I was grateful for the outpouring of love and support we had.
I was grateful for the extraordinary doctors and nurses who knew how to care for my child and give her what she needed.
Mostly, I was grateful for Raegan who showed me every day what real strength and determination looked like.
She quickly became our little hero.

I was blessed with amazing primary nurses whose personalities gelled with mine. I could see their care and concern as they took care of my little girl, allowing me to help and be hands-on as much as possible. Explaining everything that was happening, to the best of their ability. The nurses made sure I was still the main person in our baby's life, reminding me that I WAS HER MOMMY and Craig WAS HER DADDY and they were just there to make sure she was given a chance to eventually come home. Our nurses went out of their way to celebrate her weight gain, and milestones, to be my counsellor, my friend, an ear for me to vent to. The NICU was no longer scary or intimidating, but rather a second home where I looked forward to seeing my friends and be around people who understood what I was going through. It was a place I was treated with concern and compassion. The NICU that once terrified me just weeks before was now more familiar and comfortable than my home.

As days grew into weeks and milestones continued to be met, weight continued to be gained by that little 1 pounder, we were encouraged to become more engaged. We held her and did skin to skin as often as possible, gave baths, pumped, changed diapers, anything we could do to be there for her. We became familiar with the staff- the Doctors, Nurses, and Respiratory staff that we would see every day, and eventually they started to feel more like family. The NICU was no longer a scary place.

We started to be able to tell by looking at our baby girl that the alarms were false, we knew her pulse ox number just by looking at her face. We were completely in tune with our daughter. The nurses trusted our instincts and allowed us to be our daughter's voice, while they were our advocates. I was truly blessed to have such a tragic experience become manageable because of the NICU staff and their commitment to babies and families. 

After about three of the longest months of our lives, the day finally came when we could bring Raegan home. We weren’t scared because caring for her had become 2nd nature during our three-month stay. The NICU staff involved us, educated us and allowed us to trust our instincts. We were comfortable and prepared for almost anything.

We just wanted our baby home. While we loved going to visit her every night, it became harder and harder to leave her there. Our hearts and our arms wanted her with us, not left behind in the NICU. 

What I didn't expect was to feel loss, yet again, when we found out we were going home. I really can't stress how much I anticipated bringing Raegan home, but when the moment finally came, I felt so empty. We were no longer going to walk into the NICU every day, greeted by name with warm hugs, smiles and genuine love. We were going to be on my own without this wonderful family we had gained during such a traumatic time in our lives.

Alarms and certain sounds will still trigger feelings that I do not like to feel, stories of other families and their NICU journey still bring me to tears, and the pain I feel seeing pictures of Micropreemies is strong, but it's manageable. I feel I definitely suffer from a mild form of PTSD because of our experience. I believe that is to be expected. But I don't know how I would have mentally or physically been capable of maintaining enough strength and courage for my daughter and myself without my faith, and the support of the NICU team, my husband, and our families and close friends.

All the things I feared, wide eyed, drowned by sounds of beeps, alarms, and lingo I didn't understand will soon be a distant memory. What I will focus on in the future when reflecting on this time is the amazing support we had by my daughter's medical team. I wouldn't want to live that experience ever again, but looking back, I couldn't have asked for a better support system for my daughter, myself, or my husband

Thank you for everything, all of you – all your support has meant the world to us.
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Raegan, baby girl, you are our greatest adventure. 

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