Super Elliot and Super Abigail

“I find myself spending time going through their keepsake box looking at the little things from the NICU. I really didn’t like talking about what went on during their stay, but I can’t help myself thinking of every moment, the good and the bad as if it were a light switch that cannot be turned off.

At 22 weeks, I was eagerly on my way to their full anatomy screening, I was finally going to get to see their little smushed faces through 3D ultrasound.  I remember the weather. It was a sunny, chilly Wednesday morning. It was finally my turn to be screened. The ultrasound technician measured every limb and said they were growing beautifully. She also mentioned that their positions were both breech and hopefully by the time I gave birth, they would’ve wiggled their way into a locked and ready position. After measuring the babies, I had to get my cervix checked. As the technician started examining the images, she immediately stopped and said she needed to get the doctor. My stomach twisted into knots, and I was on the verge of throwing up and dizziness. I started to cry, wondering what she could have possibly seen.

The MFM attending came in and explained to me that I had an incompetent cervix that was funneling and I only had 2cm in length of cervix holding the weight of my pregnancy, and it was only going to get weaker as the babies packed on the pounds. I was told I had to go on immediate bedrest and start a course of preventative measures to avoid going into pre-term labor and invention in the case that they do arrive earlier than they should. She further explained the goal right now was to make it to 28 weeks to pass viability, and their chances of survival would dramatically increase. Up until I was admitted into the hospital, I went in every Thursday to measure my cervix. Every visit, my cervix became weaker and weaker. At 26 weeks, that was the appointment in which I knew I wasn’t going back home.

I was admitted to the L&D where they said I was officially 2cm dilated and needed to stay until I gave birth because they were not sure when that would be. It could be anytime from now, until my 35 week mark. The thought of not knowing how long I had to remain in the hospital scared me. I started scrambling trying to figure out how to put my whole life on pause for who knew how long. I lived in Room 1 in Maimonides Medical Center for 5 weeks, then on February 20th, 2019, Elliot & Abigail Reyes were born by C-Section at 30+6 weeks.

I didn’t get to visit them until 15 hours after my birth. Nothing pushed me more to be able to walk after the anesthesia wore off than thinking of finally getting to see them. Once the nurses felt comfortable with me going, my husband wheeled me in the NICU in my wheelchair. My heart was racing because I I didn’t know what to expect. During their NICU stay, they always told me that one twin can have it rough compared to the other and for some strange reason, it always tends to be the boy within fraternal boy/girl twins. “It’s usually the boy.” I honestly took what they said with a grain of salt at first because that wasn’t going to be the case for MY kids. But it was.

I was jumping into the car to run some errands when my phone rang. I saved every single extension of the NICU so I immediately knew who was on the other line. The Neonatal attending explained that Elliot had a decline in health. He was having trouble breathing and became extremely weak because of an infection and perforation in his bowels. That was when they explained that he has Necrotizing Enterocolitis, the most common and serious intestinal disease among premature babies. It happens when tissue in the small or large intestine becomes injured and inflamed. This can lead to death of intestinal tissue, and, in some cases, a perforation in the intestinal wall. He was just learning to eat and it had to be cut short. It reached a point he couldn’t breathe on his own has had to be placed on CPAP again after just needing it only after the first 24 hours of life.

Neonatal GI surgeons explained the possibility of surgery if the perforation didn’t close on it’s own. But, after a 2-week course of heavy antibiotics, a drain placed in his abdomen, and two full 24-hour blood transfusions, he fought that infection and the perforation closed on its own. No surgery was needed. I thank God that although Elliot was having a tough time, he was able to overcome this infection on his own.

I felt guilty because I felt all my time and energy was focused on Elliot’s health, that I didn’t appreciate how well Abigail thrived and had no issues. They said that Abigail would be discharged before Elliot could be.

That was my biggest fear having to go home with one child and leave the other behind.

The night before Abigail was due to be discharged, she ended up developing difficulty breathing during feedings and was experiencing apnea spells. She had to stay an additional week to make sure she was not having anymore episodes. It was like she didn’t want to leave her brother behind.

When Abigail passed her exams before heading home, the nurse who took care of her at her last day in the NICU shared the special moment of dressing her to go home. As we walked out of the room, I looked back and sobbed. Seeing Elliot still fighting with an endless amount of tubes and monitors, keeping him alive. I prayed that night and begged for Elliot to make it through and come home.

Two days later, Elliot miraculously recovered and was able to come home. Elliot is a fighter.

The NICU is such a bittersweet place. It’s filled with incubators with tiny, sick babies but with the most wonderful and skilled doctors and nurses I ever met in my life taking care of them. My life was in their hands and they did everything for them. Because of the NICU, I get to enjoy my children for the rest of my life. I am forever grateful.

Now over 12 months old, they are both thriving in their own way, although we are not in the clear. Elliot is currently experiencing a regression in development and is getting extensive therapy and work-ups to see what is going on with his development and hoping to delay it any further. Abigail is thriving and completing all of her milestones. She is wise beyond her little year and is always comforting Elliot in a way only twins can. She never misses a beat to place a hand on his lap when he’s crying. They can’t be too far from each other. They are constantly at the hip.

A lot of the treatment Elliot requires have been put on hold because it is extremely risky to be within hospitals, especially with an immunocompromised child. This brave little boy started his first round of imaging and testing to find out what might be going on. He has been having issues with motor weakness and developmental regression. The scariest part was trying to understand his seizure-like movements we experienced. ⁣Elliot completed his long awaited EEG to measure his little brain waves, and thank God that he had no seizure activity! Another test checked off the list and yet another weight lifted off my heart. The area of his brain that controls motor function is a little on the slower side, but with early intervention and stimulation, he will be able to move those muscles and become stronger than ever! His brain is 100% healthy and growing.

Those who meet Elliot are immediately greeted with an infectious smile that can make the coldest heart melt. Elliot, you are destined for greatness no matter what life throws at you. These past few weeks have been a blur and the fear a mother feels over her child’s health is something I would never wish upon a single soul. You are at your happiest and healthiest regardless, and I am eternally grateful and admire your strength at such a young age. Elliot means “with strength and right” and you my love, are the epitome of that. We will figure out what’s going on.

Right now, life is teaching me that sometimes trying to find the source of a problem alone won’t get a solution. Celebrating accomplishments regardless of circumstance, keeping a positive mind set, having a solid support system, and trusting the process will. I know because I witness it first hand everyday with this miracle in human form.

Abigail, you have no idea how proud I am at how strong and courageous you are. You are a warrior, girl. As much as I feel horrible sometimes because I know all of the struggles that come with helping your brother, you have always tested that strength on your own and are growing up into an intelligent young lady that is full of life (and attitude for sure.)

God knew exactly why I needed you both in my life, the balance needed to complete our little family.

My purpose to be apart of this is to honor my little fighters, and honor all the little fighters who made it through or called home. Each and every single life that has made it into physical form on Earth has their absolute purpose, even if it was not a long time. Awareness must be raised for mothers who are struggling during this time during the COVID epidemic, who feel scared for their child’s life.

This little cape is a reminder how far they’ve made it and how far they’ll continue to go.

This is for you Elliot and Abigail, love you both beyond words.” –Super Parent Celenia

 

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