When Not That Bad is Still Bad Enough

I sat there in the doctors office holding my 6 day old baby girl.

The Doctor looked over my chart, asking me questions about my family medical history.
“So your other two girls??? They are completely healthy, correct?!?!”
It hit me like a ton of bricks. It took every ounce of me not to just start sobbing like I had been for the last 24 hours.
“Yes perfectly healthy”
At that moment I realized that my Hazel was sick. Not that bad, but still bad enough.
Lets go back…

The first two days of Hazel’s life were pure bliss. The honeymoon. I felt great after her birth and I was so smitten by this perfect little angel.
On the third day I started to have questions.
She is very sleepy? Well she is a newborn.
She doesn’t really stay latched that long? Well Lucille was a pretty “efficient nurser”.
I notice a bit of jaundice. Well the other two had jaundice, I’ll just put her in the sun a bit.

I took her to the pediatrician. She said all the same things I was thinking. This was my 3rd baby, I was pretty “chill”, but deep down something didn’t feel right. Hazel was eating and had sufficient dirty diapers and seemed to be ok so I just planned to see my pediatrician the next day to check her weight gain. At this point her jaundice was not getting any better, it was getting worse. I would nurse and nurse and put her in the sun every opportunity I had. She would seem to be getting better in the evening just to wake up in the morning looking highlighter yellow. I had someone always watching the big girls because I gave every ounce of myself to Hazel, nursing her every hour and a half even through the night.
I took her in. NO WEIGHT GAIN. I felt a pit in my stomach. Something was wrong. I took her straight to the hospital. As I sat in the waiting room, just 5 days postpartum, trying to control the flood of emotions that were overwhelming me, I heard my phone ring. Unknown number. I never pick up unknown numbers. This time I did.

“Hello, my name is Dr. xxx, and I am calling about Hazel’s metabolic newborn screening. Something came back and I want you to take her to the hospital right away please”
Wait a minute “I am at the hospital” I told her, really too shocked to even question what this was about. It was almost as if I couldn’t talk.
“Ok well I am going to call the hospital and send over a prescription for some blood work, just hold tight and I’ll call you back”
I couldn’t move. I stared at the other parents in the waiting room, not reacting, my baby sleeping in her car seat.

They called me into the back to draw her blood. This wasn’t a simple heel prick. An IV blood draw and as soon as they told me I started to cry. An inconsolable cry as I heard my baby scream. They couldn’t find her vein and as she screamed louder, I cried harder. When it was all finished and I brought Hazel to my chest to nurse, I still cried. I couldn’t stop. The nice ladies asked if I was ok, I couldn’t stop crying. I threw my diaper bag in the car seat because I was holding my baby, no matter how far I had to walk. I still cried. I walked almost a mile to my car, crying the whole way. I cried the whole way home. I sat outside my house. I cried while Hazel slept. It was all coming out, what was happening?

I spoke with the Doctor the next day. She was an endocrinologist. Hazel has a condition called congenital hypothyroidism, which means that she was either born without a thyroid or a deformed thyroid. What makes this so concerning  is that the thyroid hormone directly affects the brain. Without the proper hormone production, especially in the first 3 years of life,  Hazel could have delays such as ADHD, learning disabilities, physical delays or autism.

The great news? We caught this so early. She started her medication, which she will probably have to take for the rest of her life, on her 6th day of life. She had my hormone the first few days after birth so the doctor is confident she will be just fine. What a relief! Still scary but Hazel will be just fine.

I came home from the appointment hoping to feel better, to feel relieved, to feel anything but fear, but I didn’t. Not only did I have all the same old feelings but on top of that I felt so much guilt.
My child has a condition that can be treated. She will live a very normal life. She will have very few limitations. She will be healthy. I could rationalize all of these things to myself. I was mad that it didn’t make a difference.

Why then was I still sad? Things could have been so much worse. There are children who suffer incomprehensible amounts and parents who have to handle so much more.
Why was I wallowing in my own self pity? Why couldn’t I pick myself up off the floor?
A week passed and we started to see the effects of the medicine start to kick in. Her jaundice disappeared, she had more wakeful moments, she nursed for longer periods, but I still cried.

I couldn’t talk about her without tears welling up in my eyes.
I felt sadness and guilt.
I should be happy that everything will work out, I should be but I wasn’t.

One of my girlfriends called to check on me. I’ve known her for a long time and although we don’t live close I still consider her as one of my best friends. She had her baby girl about 5 weeks early and spent many weeks in the NICU. She opened up to me about her PTSD and gave me a very insightful and impactful piece of advice.
You need to mourn. Allow yourself to mourn. Yes your daughter will be just fine and yes things could have been worse but don’t discredit how this affects you. You have the right to be sad. You have the right to be scared. You have the right to mourn the way you thought things would be. You need to mourn the fact that your story didn’t play out the way you thought it would. Your story will be different and that is ok. Let yourself process that as long as you need to. It takes time.
It might not be that bad, but it’s still bad enough.

That was exactly what i needed to hear. I needed someone to tell me it was ok. Having felt those same emotions my friend was able to relate and I couldn’t understand then how much those words would help me. After this I allowed myself to embrace that yes, things could have been worse but that shouldn’t take away from how hard it was for me those first few weeks. She would be ok, and I would be too. I was sad and this was scary and when I allowed myself to feel all the feels it took a huge weight off my shoulders.
I stopped comparing and just allowed myself to be human.
These pictures are from the day after we found out about Hazels condition. Although I love them it is very hard for me to look at them without having those emotions flood back.

These pictures remind me of a very difficult time and also show me how strong I can be when I allow myself to be vulnerable.
Things are very normal now, Hazel is responding really well to her meds, and although we have a long road of tests and doctors ahead of us we will be fine. It might not be the way I planned but it is the way its going to be and some days I am going to be sad about it. It’s not that bad, but it’s still bad enough to make me worry and be scared and be sad, and I accept that. I’ve chosen to give myself Grace and that makes this journey so much easier.

photo credit: Womb to world photography
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