A NICU Story (part 2)

After finding out that Everly had CHARGE Syndrome I did what any person would do. I googled the crap out of “What is CHARGE Syndrome?” Essentially, it’s having specific medical anomalies. Each letter of CHARGE stands for something and you can be diagnosed either clinically or genetically. In Everly’s case it was genetic and she has letters C,H,A and E. She has a Coloboma in her left eye, she was born with Heart defects, Atresia choanae and Ear abnormalities and she also has the malacia, which would keep her on oxygen until she was 16 months.

The list of diagnosis were daunting and the statistic were scary with a only 70% surviving to five years old and the highest death rates are in the first year of life. I had no idea if she would survive. Burdened now by these statistic I’d keep them to myself. I didn’t want to worrying Aaron so instead I smiled trying to convince everyone including myself that everything was going to be OK but In the moments when I thought no one was looking my face said it all.

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A photo Aaron captured when i thought no one was looking.

I wish i could say that this was the end of her diagnosis but I’d be dreaming.

At one month of age Evie had her first surgery. After discussing it with her doctors we decide it would be best if Evie had a procedure to have a G-Tube put in as she can’t swallow. This would allow us to give her food directly into the stomach rather than a tube that went through her mouth and down her throat. You would think that deciding whether or not to have a procedure done on your baby would be a hard decision but there was always one question that played through my mind like a broken record and still does today “What is her quality of life?” this question would be the driving force behind any decisions that we made.

The day before her procedure someone from palliative care came to speak to me. They asked me if I would fill out a Physician Orders for Life-Sustaining Treatment (POLST). Let me tell you something, shit does not get more real than when you’re discussing whether or not you want doctors to save your baby.  Obviously, I want them to save our baby.

The day of the surgery I walked with Evie as far as they’d let me go and then I watched them take her away. Since Aaron had to work my mom came with me. We passed the time by going to the cafeteria and grabbing some coffee.  The procedure didn’t take long just a couple of hours. They called me on my phone to let me know that she was back in the NICU. I rushed up to her. When I saw her I could see an immediate change. She was so bright eyed. I knew then that we had a made the right decision. For the first time in her life she could close her mouth completely; no longer was there a tube coming out of it.

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Right after G-Tube surgery

It was such a relief to see how well she was doing and to be able to call Aaron and tell him that his baby girl came through with flying colors.

Like many days in the NICU this was a good day… little did we know we had 216 more to go.

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A NICU Story (part 1)

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For most parents seeing your newborn is a matter of staring in their direction while sitting sleep deprived on the couch but for us, for 247 days we would have to drive 70 miles one way, pay a hundred dollars a month to park, walk across the street sometimes in freezing weather, show the security guard our badge, take the elevator to the 3rd floor, pick up a phone that was outside the locked doors of the NICU, wait to get buzzed in, sign in, check out a lock, put our belongings in a locker, rigorously and diligently wash our hands, put on a gown and then and only then could we see our baby.

The first time we walked in to the NICU we were greeted with a smiling face which was ironic because it seemed like the saddest place to be. We were taught how to wash our hands and trust me unless you learned how to wash your hands in the NICU you don’t know how to wash your hands. We put on a gown and walked down the hall to Room A. We must have looked like a deer in the headlights. Machines, wires, tubes, monitors, loud beeping coming from every direction my world was spinning and then I saw her my precious baby girl. I didn’t know what to think. My instincts kicked in I need to hold her.

Her Nurse for the day came over to tell us that she had called the doctor to let them know we were here. The doctor introduces himself as a cardiologist which instantly catches my attention. Why would a cardiologist be talking to us? I had had two Echo’s done on Everly when she was still in utero her heart is perfect. Turns out they had missed something and by something I mean everything. Everly had 3 holes in her heart. How does someone live with 3 holes in their heart? The doctor assured us that he believed that the holes were small enough to close on their own and we would probably be out of the NICU in a couple weeks. He was wrong.

After the doctor left and 36 hours after Everly was born I got to hold her. I was exactly where I needed to be.

One of the most difficult things I’d have to endure were my own thoughts. I began to feel like I wasn’t enough. Like most moms I wanted to be everything for my baby but the reality of not being able to help mine was crushing. I’m her mother I want to be the only one that can save her and now it felt like I was the only one that couldn’t.  I’d walk in to the NICU and know nothing about her or the machines that were keeping her alive. The nurses gave her her first bath and changed her first diaper unknowingly robbing me of the few things I had left establishing me as this baby’s mother.

I slowly began to learn about her equipment not only how it worked but how it was helping Everly. By educating myself I started to become more comfortable and confident. Still it wasn’t enough. The doctors did two bronchoscopies by the time she was three weeks and were eventually able to diagnose her with Tracheobronchial Malacia finally an answer but this diagnosis only explained why she couldn’t breathe. A couple of days after her procedure her labs had comeback they told us Everly has CHARGE Syndrome. My initial reaction was relief we now know why Everly had all these anomalies, underdeveloped ear, partial facial palsy and three holes in her heart. I just had one question. What the hell is CHARGE Syndrome?

A NICU Story(Preface)

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The doctors and nurses are all staring at us, Dr. Rhed  “We tried to remove her off the ventilator and she went in to cardiac arrest.”

Before we go there let me take you back to where it all started, this journey of heartache and love.

Aaron and I had been pregnant before, two times in fact but there was something about this baby. When I saw her in an ultrasound I knew this one was going to stick. After suffering two miscarriages doctor’s appointment were a mix of emotions both of us scared we wouldn’t hear a heartbeat. As the months rolled on with reserved excitement I couldn’t shake this nagging feeling that something wasn’t right but with each appointment I would be reassured, our baby was perfect.

As any pregnant women knows the last trimester is tolerable at best. So there I lay in the middle of the night I can’t sleep because there’s that feeling again. I start googling pictures of ultrasounds specifically ones where the baby has Down syndrome I’d compare them to my ultrasound. There not the same but there’s something wrong and I know it!

The next morning I woke up to go pee and I felt a little gush. Nothing dramatic like you might see in the movies but big enough to make me wonder if my water broke and yet small enough to make me think it could have just been pee. I call the doctor and she tells me to go to the hospital so they can check if my water broke. They do the test and lo-in-behold it had. I was shocked. I wasn’t ready. I was only 35 weeks we hadn’t even picked  a name yet but nevertheless it was go time.

The pediatrician told us that because the baby was early they would be taking her almost immediately to the nursery to observe her. It’s not what I wanted but I knew it was what was best.

After 12 hours of labor on the fourth of July our baby girl was born, Everly Paige. She was perfect. She was my heart. I got to hold her for just a couple minutes and then they took her. Before they would let me see her the doctor came to talk to us. She explained that her ear had not fully developed and it looked like she had partial facial palsy. I immediately started thinking of successful people with the same characteristics, telling myself it would be ok. The doctor also explained that Everly was having a little trouble breathing but she thought it was because she was little early and just needed until the end of the week to get a bit stronger before we can take her home.

After 7 hours I was able to see her she look like a little doll except this doll was covered in wires and was on oxygen. I asked to hold her they didn’t think it was a good idea. I couldn’t help it, I started to cry. This isn’t how it was supposed to be. She was supposed to be perfect.

A couple hours later a different doctor came to speak to us to tell us that Everly kept desatting(A decrease in oxygen) and although they weren’t significant(more than 20 seconds) they weren’t equipped to deal with an emergency and he thought it was best to transfer her to Benioff Children’s hospital Oakland and they would be doing it in within the hour. My heart was breaking for my little girl. All I’d dreamt for her was an easy life instead she’d have to face death before every breath.

Before she was transferred a nurse had warned us that it would look very dramatic. They rolled Everly into our room she was inside of an incubator strapped down to the gurney with two thick black straps, wires and machines everywhere and 5 full-grown men all for this little 5 pound baby. The sight of it all brought us to our knees and the gravity of the situation hit us like a ton of bricks. I knew something was wrong.