Only the beginning.
We learned of her defect at 16 weeks due to an abnormal bloodwork result. Followed by numerous doctor visits, sonograms, and a transfer to a children’s hospital post birth so she could have the best care possible.
At 36 weeks and 3 days, Annie came into the world only to be whisked away shortly after holding her in my arms. It didn’t feel right. It’s so unnatural having held a tiny human safe in the womb for 9 months and then watching her go. I was ready to hand her over to her dad to embrace her, only to be separated by the nurses and doctors hands, not knowing the ifs and the when’s.
The NICU was an uncharted territory.
For 50 days, we called the NICU our home. Life was changing and changed in an instant. Words cannot express how we felt. It’s a feeling of guilt, anger, betrayal, heartbreak, sadness, all mixed together. I want to tell you don’t be afraid to have emotions, they make you human. Life is very fragile. I know pregnancy is not easy for most but it’s a huge blessing. I refused to let grief take over and chose hope over fear. Sometimes our strength seems absent to us, just by getting through it, you are strong.
Out of your control.
As much as you want to be there for your child, there are going to be things out of your control. The way you touch and hold your child. It takes 10 mins and 3 people with all the tubes, IVs and wires for you to hold your baby. They expect you to hold for at least an hour. The way you breastfeed. The constant pumping. The feeding tube through her nose. The non-nutritive sucking. The bottle feeding. And finally breastfeeding. But wait, the timing of it, how long she sucked for, equals to this “approximate amount” and the rest will go into her feeds or bottled. There’s hardly any privacy which makes it hard to bond or figure out her needs on your own. Even if it’s requested. You quickly learn to document her charts. You learn to trust your instincts but also trusting the medical team she has. You learn her ticket out of the NICU very quickly. Even if it’s not how you imagined it to be.
Just cry.
I quickly learned in NICU it brings out a rollercoaster of emotions. On top of it being out of your control, the constant alarm sounding off made life so very stressful.
She had her closure surgery the very next day after she came into the world with incisions improperly healing. The best decision was to place a wound vac on it a few days later to speed up the healing process and push the organs back in again. It killed me every time she was in pain. Although, ventilated due to morphine drip which causes lung distress, my radar goes off every time she’s poked for a draw because of the pain she’s in. It killed me. Every. Single. Time.
One step forward, two steps backward.
That saying “One step forward, two steps backwards”, rang true nearly everyday for the first 4 weeks. There was always something. I remember we couldn’t hold her because “holding her” was causing her O2 alarms to go off. I remember her breathing more than the ventilator helping her yet taking her off the ventilator put her in cardiogenic shock. I remember they were able to feed her yet one day they had to stop the feeds due to pressure in her lungs and stomach. I remember the ultrasound result coming back with a “mass” on her liver which turned out to be hematoma that resolved on its own. I remember staring deep into her chest x-rays, at the smallest lungs I’ve ever seen, wondering when the fluid would go away. I remember trying to calm her down so she can breathe, telling the nurses something was very wrong, her alarms sounding off so loudly. I remember walking in the next day only to find out she needed epinephrine shot to bring her back. I remember the gas blood they were drawing every half hour and then the medical director giving us the worst case scenario as the room filled up with her medical team, as they bagged her, switching out her equipments and moving her to a bigger room downstairs to accommodate her cardiac needs, the “ECMO room”, I later found out. I remember having to leave her, unable to help her, in shock, feeling extreme guilt for bringing her into the world, unable to find the words to tell our family that she may not make it…I remember my heart would stop every phone call to check in before we go to bed. Even the calls we received from them out of nowhere. I remember her at her worst withdrawals, the Annie we didn’t know. The heartbreaks we’ve endured daily inside. I remember the lump in my throat leaving her at the end of the day, never knowing what tomorrow would bring. Each day, felt like million steps back.
Finding the positives in the little things.
There were days when things haven’t let up for a long time. We always try to find the positive in the smallest things. The one number that normalizes in her blood has levels. The number of alarms decreasing. The number of medications and dosage coming off. The number of IVs coming off. The heart rate slowly stabilizing every time she hears our voices, the way we touch her, the way we give her kisses. The day they started her feeds again. Her eyes opening. The smallest alertness. The ability to hold her with ease. The weaning of her cardiac equipments, the ventilator, the peeps, and her feeds. The latching. The smallest suckling of her pacifier. Leaving her at the end of a small positive day even if it was just one thing, was our biggest victory.
The end is near.
The last three weeks, I’m not going to lie, felt so long. If you thought and read that the first four weeks had to be tough, it was but not in the least. The last weeks were getting old. We were told most days out of the week, “She may be discharged soon.” There was no timeline. No set date of her discharged. It meant she could be here one more week or 3 months. We had no way of telling. Everything was in Annie’s hands. One day, during her wound vac change, “Let’s send her home with a portable wound vac.” One day, she lost considerable weight that it set her back few more days. One day, she kept throwing up formula, it set her back. One day, her withdrawals from her continuous morphine drip took longer than they thought. One day, she wouldn’t breastfeed in 15 mins, I was forced to let them pump it into her feed or bottle feed her. Those one days, were one days too many. It constantly felt like a daily battle to get her out of there. Finally, after talking with other former omphalocele NICU moms, I decided to keep pushing. That meant, pushing for supplementing, portable wound vac order, no more morphine, getting her off the methadone, getting her through her worst withdrawals, advocate for breastfeeding on demand with bottle supplementation, rooming in, getting EVERYTHING checked off on her discharged list as soon as possible.
One day, “What’s next?” Turned into “That’s it”. It was time to go home. 50 longest, most emotionally, taxing days of my life.
Gratitude.
From the bottom of my heart, thank you. You know who you are.
Those that reached out, sending us healthy meals and cute gifts for our baby girl, sweet emails and cards from afar, our parents for visiting as our support system, the friends and gyms for doing her workouts for International Omphalocele Awareness Day, Rebecca, specifically, for setting up Go Fund Me to help offset the cost. I HATE asking for help and absolutely dislike “charity” but I’ll never forget all the donations, anonymous or not, random gifts from friends and strangers alike, you all have helped us get through this so much. I’ll forever be in your debt.
Being a NICU parent turned me inside out and revealed what I was truly made for. It has made me grateful for her medical team who challenge themselves daily. It has pushed me to be strong when all I wanted to do was hide. But mostly, I am grateful to see my girl grow knowing what hard beginnings she overcame.
That Deaf RDH Foundation 