Missed Flights and Bili Lights

My little family and I were supposed to board a plane to California awhile back, but we missed the flight. We did end up making it to California in December though, for a podcast recording or two and live show.

I don't want to get into details but we were all pretty broken up about it. Part of the issue was that we had to double back to try to find my son's birth certificate. Between missing the flight, the season change, and the stress of digging through medical papers from birth, that day was pretty dark for me.

I'm sure other mothers are way more organized than I am, but my son's birth certificate is stored with his medical records from pregnancy (ultrasounds, measurements, etc) to now. They are rather disorganized, but they are all together and most certainly extensive.

I brought stacks of them to his first year's worth of pediatrician's appointments and was a walking encyclopedia of weights, heights, number of wet diapers, and bilirubin records. We were digging through the papers on the way back to the airport and I had to keep it together, but when we returned home and began digging through the stack on the floor, I broke down. Originally I had stayed next to my computer, working fervently on anything to keep me busy.

My son walked up to my husband and began pointing through things as he organized them. I tried to tune them out, but then my son picked up a small sign that the NICU nurses had placed on his bed during our stay. It was to inform the nurses that he would not be given any formula or donor milk because he was exclusively getting my milk, but it is written from the perspective of the baby. It says something like, "Mommy is making milk just for me" or something like that. My son asked my husband what it was and my husband explained that to him that he was very, very sick as a baby and we had to take him to the hospital.

The floodgates opened as he kept going. He told our son that I saved his life by fighting for him after the doctors brushed us aside only to frantically call hours later to say they'd make a mistake. He told our son that my milk kept him safe and healthy even though he was sick. I was crying and my son came up and gave me a kiss. He said "I love you mama" and put his head on mine.

Our pregnancy was hellish. We had more issues and acronyms going on then should have been humanly possible. We were both lucky to survive it. One day we were told we would deliver at 35 weeks because our son wouldn't survive beyond that, the next we are delivering at 38 weeks as an emergency induction.

On the day we were discharged after giving birth, we finally thought we were in the clear. We had all managed to stay alive, if only barely. We were going home, we never had to come back. We'd escaped the possibility of a NICU stay and any serious complications during labor.

We had one day at home.

One day.

One day as parents of a healthy baby boy.

One day without watching our son die every time we closed our eyes (a part of NICU PTSD).

One day of not knowing the horrors of sterile white hallways and eerie blue bili lights.

One day of parenthood where we were blissfully unaware of what it is like to have to hold down your six-pound baby as the doctors and nurses cut gashes into his feet and milked blood out of them.

One day of not despairing as a few hours in the hospital turned to days with no release date in sight.

One day of being able to hold our child whenever we wanted.

One day of not being forced to pump instead of breastfeeding.

One day of not being told that it was my fault because I wasn't producing enough milk (they ate those words - I pumped in front of a male doctor to prove I had an oversupply).

One day of not having to sleep in chairs that weren't meant for sleeping.

One day of not knowing what it was like to be handed a Bible to read while watching another woman's infant struggle to breathe and wanting to break the window to throw the book as far as possible.

One day of not being told that I should go home and could pick up my newborn when he was better.

One day of not having to watch as my child was placed in a clear glass box with air holes cut in the top like a captured bug.

One day of not knowing what it feels like to lose your mind as the world starts spinning out in an elevator as the nurse tells you that you're going to the NICU.

One day of parenthood that wasn't haunted by the image of a 26 week gestational age baby coding in the bed next to our son's.

One day in the eye of the storm.

One. Day.

I remember the day they let us go, they handed us a paper detailing symptoms of NICU PTSD and I glared at them. I didn't need to read them, I already knew. Occasionally, I still have a nightmare from it, though they have lessened now that he is older.

Our son is two and a half now and we still don't talk about or look back on his first four months. Even after we were discharged, we had home health care for him. He had to be in a bed, literally strapped down, at home. At two months old, he used to scream for hours on end as we held his hand and cried while we got just a few minutes of therapy for him. There were frantic trips to the pediatrician for issues surrounding what he had gone through.

I didn't sleep. I ate only to keep up my milk supply. I dealt with issues from pregnancy (still do).

I don't know if it'll ever be easier to look back on. I somehow doubt it, highly.

What happened was not okay. It'll never be okay. I'll never be able to walk into a hospital and not have anxiety running through my veins. I'll never forget that there are places in this world where infants ride the line between life and death.

But today, my toddler wants cuddles and kisses.

Today, every time an ambulance passes, we stop and he tells me, "Mama, they will be okay" and we pray.

Today, he is happy and healthy.

Today, everything is going to be okay.

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Good to know he is ok now, your son is lucky to have a awesome mum like you.

Your story beats with my son. Your son is so blessed to have mummy like you. My son was born with CDH and was straight away rushed to ICU to be intubated. Then we spent 4 months at hospital. My gosh, there was like no life because everyday was pain not knowing will he survive. I did post his story on my blog as "introducemyself". Glad he survived and back home with us till now 3 years old. Yeap no doubt alot of visit to pediatrician, surgeons, and therapist. Now is being tube-feed still but learning to eat. So happy to read your son is happy and healthy now. God bless you and family 😊

That must have bern horrible. I am so glad you have a happy healthy toddler!!

Thank you, I am too.

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