Rocked to the Core: A Tale of Prematurity

Francie Khalaf by Francie Khalaf Additional Needs

Francie Khalaf

Francie Khalaf

I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons

Prematurity changed me.

As in, I will never be the same after experiencing the NICU and having a child born so small. Quinn and Sawyer came charging into this world at 27 weeks. I hadn’t even hit my “dreaded” third trimester.

After their arrival, we had to wait a week to hold them.

A week to hold the baby you’ve been praying for your entire life. Even at that one week mark we couldn’t hold them together and my husband and I had to flip a coin on who we would hold first.

I held my son Sawyer and it was the sweetest moment of my life. I was overcome with tears and that is when it hit me, I am a mom. I made this two pound human I am holding.

I was so worried I would break him but at the same time I felt strong.

I felt like I could do anything.

A friend hopped on a bus on her lunch hour just to come and document our first time holding our children, for that I will forever be grateful.

When I look back at pictures it’s hard for me to imagine the kids so small. My son’s head fit in the palm of my hand. His hand was as big as my thumb.

We didn’t plan for prematurity, no one does. We didn’t plan for the dozens of complications we had either.

Sawyer and Quinn both ended up with one of the scariest preemie problem you can have, the one they don’t tell you about until you have it.

Necrotizing enterocolitis, an infection of the gut that slowly eats away the small intestines. When they begin to show signs they immediately go onto antibiotics and doctors are put on high alert.

It has a very low survival rate and is extremely hard for these tiny babies to fight.

Sawyer and Quinn had a long hard road fighting this awful infection. Sawyer got so ill that we said our goodbyes as he headed into his first surgery at under three pounds and two weeks old.

When we found out he made it through the surgery we were elated but the surgeon told us “What is left of his gut didn’t look good, I don’t know if he will recover.” They left him open until the next day, OPEN.

It was a terrifying thing to hear about your child let alone see. Thankfully he did recover after months of complications.

Quinn battled for a full month before they did surgery and by then she was so sick that she lost a lot of her blood during surgery and had to undergo multiple transfusions.

They actually set up a transfusion to give her blood as they were doing surgery.

Although we went through something terrible and traumatic, we survived.

Our children beat the odds and survived something that many don’t. In fact, we had babies that did not make it right next to us.

I will never forget holding my son a little tighter when the family next to me came in crying and said their daughter had NEC. She did not survive.

When we came to see our kids the next day, she was gone, a hole left in our nursery. We had become friends with the family and hearing their daughter didn’t make it, was heart wrenching, devastating, name the word and that’s how we felt.

Another friend of ours lost their baby unexpectedly when he was on the road to recovery with NEC. It happened just down the hall from us on the eve of Quinn’s discharge.

I hugged my friend while she sobbed on my shoulder and all I could think was “I am so blessed.” I felt guilty that my kids had survived and hers did not. These are the things that happen in the NICU that no one talks about.

These are the things that stick with you for life and rock you to the core.

Sawyer and Quinn now are two years old. Although we still have our battles we are mostly healthy.

Our experience in the NICU changed me for life. I was diagnosed with PTSD just before the kids were discharged from he NICU but more than that, I am a different person.

I no longer sweat all the small stuff. I have more compassion than I ever did for people and what they may be going through. I remember that life is short and can sometimes be even shorter so soak up every moment.

Finally, when I am about to lose it because my daughter is throwing a tantrum or my son is grumpy, I remind myself that they could not be here at all.

I give myself a second to breathe and remember that they are here, they are strong, they are throwing tantrums because it’s normal.

Our life certainly isn’t normal. Each of our children have been diagnosed with Cerebral Palsy.

We have many therapies a week and check ins with doctors every couple months.

We try to navigate the past, present and future all at once predicting what therapies or adaptations we have needed in the past, will need, and need now.

I have decided that if we can give hope or inspiration to anyone, then it was all worth it. Having a premature baby made me into a better person, even if it wasn’t how we planned our life to go.


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