A memory of Hailey's fight

Today I was supposed to go to my doctor on post to get a referral for us to go see a Genetics Counselor. Unfortunately, that was canceled due to the 'blizzard' like conditions here in Southern Alabama. We were told that Hailey's disorder, Full Trisomy 18, was not a result of something being 'wrong' with Josh or I, that it was purely random, and that we will be able to have healthy babies in the future if we'd like to try again. Regardless, we were told that we need to see a Genetics Counselor to discuss Hailey's Trisomy and make sure that everything is okay like they say.

So today I thought I'd blog a little more about our experience with Hailey in the NICU and Trisomy 18...

One of the health problems that most Trisomy 18 babies have is apnea - which basically means that they 'forget' to breathe. Since Hailey had full Trisomy 18, every cell of her body contained faulty data which made nearly everything difficult for her body to accomplish, made it impossible for her to grow and develop, etc. Hailey suffered from apnea while she was in the NICU. She didn't 'forget' to breathe, rather her body and the messages from her brain to tell her body to breathe did not always function correctly. I had a better understanding of what apnea was when I saw it firsthand.

The day after Hailey was born, I was discharged from the hospital and allowed to drive to Birmingham to see her (Josh was already there). When I first saw her there she had already undergone a surgery to place her intestines back inside of her stomach and some other procedures. Josh had witnessed some of Hailey's breathing problems before I had. I don't remember which day of being in the NICU it was when I saw Hailey's apnea, but it couldn't have been more than a day or two because at that point we still didn't know what was wrong with Hailey; we didn't know she had Trisomy 18. I was warned that Hailey had apnea by Josh and the doctors, and I had the basic idea of what would happen, but nothing prepared me for the attack I saw. I've never described this to anyone...

The screen that monitored and showed Hailey’s vitals started to show a drop in everything and started beeping. This would happen often. Usually if Josh and I put our fingers or hands on Hailey's tiny body and wiggled her around a bit and talked to her, she would 'snap' out of it and her vitals would return to normal. This time; however, she didn't better.

I watched Hailey's tiny chest for signs of breathing. I could see that the normal rhythm of it rising and falling was not there. And this is where I began to see that her apnea was not really 'forgetting' to breathe or her not realizing that she was supposed. Her entire body showed that she desperately wanted to breathe. Her apnea was really her wanting to breathe, but not knowing how.  She wanted to, but she couldn’t.

I remember stepping back with Josh as the nurses began to attend to Hailey. She was losing color. She turned a sickly pale blue-purple color. I watched her little back arch off of the bed and her chest expand as far as possible as she struggled without success to breathe. The sight was almost unbearable. I was frozen in time watching her.

This memory, unfortunately, is still pretty vivid. I was watching my daughter dying, literally fighting with everything in her body to survive and breathe. This tiny, fragile, little baby... The fight in her was unmistakable. I felt like I had stopped breathing right along with her, holding my breath as I waited and hoped she would be able to take a breath. Not ready for her to be gone yet. Not in front of my eyes like this. This was the type of death I did not want for her. It was painful, it was ugly, it was anything but peaceful. I began saying quiet desperate prayers in my head - Not now God. Please don't take her yet. Help her breathe God...

The sight of my tiny, fragile, baby girl, her skin an unnatural color, almost purple, back arched, chest expanded, face scrunched, mouth open like she was trying to let out a screaming cry...but no sound...

Have you ever seen someone fight for their life? That day I did.  I saw my baby fight for her life. There was nothing I could do. I was helpless. It was terrifying.  A sight I would wish on no mother...

Thankfully the nurses resuscitated her ... I'm not sure of the medical terms for what they did - but they used an oxygen mask over her tiny face, and she took that breath she had been longing for, that I had been longing for for her. I let out my breath I had been holding. She was going to be okay... for now.

That day my daughter almost died. And it wasn’t the first time. I’ve never seen something fight so hard. I almost had expected that when she suffered from apnea and had a breathing attack, that it would be less of a violent fight. That her little body would just be lying there still as she slept and she would just stop breathing…that she would look lifeless almost… it was the exact opposite.

My daughter wanted to live. She fought hard for her life. She did this numerous times. Thankfully, God decided each of those times to spare her life and heal her breathing.

This wasn’t only me seeing my daughter fight death in front of my eyes. It was me seeing for the first time the true strength, determination, and courage she had, just days old. This was the time I realized how perfectly her name fit her – Hailey: courageous, heroine.

*****

Sometimes we turn to humor in difficult situations. Perhaps humor helps us get away from the grim seriousness in front of us. Like a survival mechanism. Maybe if we make light of the situation it would be less serious and difficult…maybe it gives us hope…maybe we just don’t know what else to do…

Hailey was not always the pink shade a new baby should be. There were many times in the NICU that she lost her pink color for various reasons – like when she’d have apnea. She was known to be shades of pink, red, purple, blue, white… We joked with her and each other saying that she had a talent for changing colors – our little chameleon. We told her that we didn’t like this talent of hers. I sometimes referred to her as our purple-people eater …ya know from that kid’s song – one horned, one eyed, flying purple-people eater….not sure why those song lyrics popped into my head when she turned purple…but we’d tell her that we didn’t want any purple-people eater so she needed to stop turning purple all the time. That usually worked. :)