“I have always loved being a mother. For 6 years, it was just TJ and I. When I learned I was pregnant again, I was over the moon. From the beginning, things did not sit well with me. Two days after taking a home pregnancy test, I was extremely sick and unable to eat any meat. The headaches and vomiting were endless. Some call it morning sickness, but what I was experiencing lasted all day! I was sick if I tried to eat and sick if I did not eat anything at all.
I went to my first obstetrician appointment and it was revealed I was carrying twins. My nurse had explained in twin pregnancy, it is very common to have the symptoms I was experiencing, as my hormones were multiplying fast. I was prescribed Zofran for hyperemesis gravidarum. It worked for about four hours. Even though I could only take it once every eight hours, I was able to eat and gain weight.
After that visit, my doctors’ office called me back and asked that I come in for another ultrasound. At this time, I was only measuring five weeks pregnant. This immediately made me concerned. In my first pregnancy, I received two ultrasounds, one at the initial visit and one for the anatomy scan. I thought to myself, ‘Maybe this is because I am pregnant with twins,’ and let it go. After that visit, I was seen weekly until about ten weeks. At the ten-week ultrasound, I worked up the courage to ask why I needed so many ultrasounds.
The technician explained they were looking for a membrane between the two babies. I saw the doctor after and he explained the different types of twin pregnancies. The first type is fraternal twins. Each child has their own sac and placenta and is the lowest risk. The second type is identical twins who share the same sac and placenta and are the highest risk. Lastly, identical twins, who share the same placenta, but have separate sacs, are medium risk. They found a membrane so my twins were categorized as mono di or monochorionic diamniotic. He advised me that I would need to be followed by a maternal-fetal special for high-risk pregnancy. I immediately started doing research on complications with mono di twins. Two main complications that came up were TAPS (Twin Anemia Polysythemia Sequence) and TTTS (Twin-To-Twin Transfusion Syndrome). I continued to get weekly ultrasounds at my OB until my 14-week check-up with the maternal-fetal doctor. The initial appointment went well. The babies looked amazing.
I would be monitored every two weeks for my entire pregnancy. On the day of my 16-week checkup, December 24th, 2019, I woke up feeling uneasy. As I drove in, I just knew something was off. You could call it a mother’s intuition. These appointments are about two hours long and they go over everything on each baby in detail. Usually, the ultrasound techs are friendly and excited to talk about your babies. Not this time! She was silent and barely said a word to me. At first, I thought she was just mean, but I glanced at her and she looked as if she saw a ghost. I then watched every measurement on the screen and realized Baby B (Jeremiah) was measuring small and his blood flow was not the same as Baby A (Trey). She finished up her exam in silence. When I asked if everything was okay, she said, ‘You will need to wait for the doctor,’ and walked out of the room.
At that moment, I felt my heart drop. I knew they had TTTS (Twin to Twin Transfusion) and I would possibly need surgery. The doctor came in and explained what I already knew. Jeremiah was receiving a smaller share of nutrients, which put both babies at risk for complications or worse, DEATH! I scheduled my appointment for December 27th at the children’s hospital. They explained this was an all-day appointment. We would arrive at 7 a.m. and leave by 1 p.m. What I learned was they did not have TTTS, but Jeremiah had Selective Intrauterine Growth Restriction (SIUGR). The doctor strongly suggested I do what is called ‘selective cord reduction’ of Jeremiah to protect Trey from any demise. This meant I would basically cut off his connection to the placenta and allow him to die. They gave Jeremiah a 10% chance for survival. If Jeremiah did pass away, Trey had a 60% chance of having a stroke after and causing severe brain damage.
I was devastated. I could barely walk or talk. I went to the car and cried for the entire hour drive home. After days of endless research and a wonderful support group on Facebook, I learned both twins could survive. I made the decision to continue on in my pregnancy. From 17 to 24 weeks, I had weekly scans to check the cord flow and growth of both twins. Jeremiah was always under the 10th percentile, but his heartbeat was strong and all organs were functioning. After every exam, the doctor would ask if I changed my mind about my decision to carry on in my pregnancy. It hurt like hell, to hear once a week your baby is probably not going to make it.
At my 24-week check-up, I started to see the light at the end of the tunnel. My babies were now viable and could survive if born! I returned to my maternal-fetal doctor for my 24-week appointment and that day, I knew my life was forever changed! During the scan, there was dead silence again. Jeremiah had little to no amniotic fluid and was measuring almost three weeks behind. The doctor strongly suggested I go back to the children’s hospital for fetal surgery of TTTS. I obliged and had surgery at 24 weeks and 3 days.
The fetal surgeon came in and told me the surgery went great, but Jeremiah’s survival rate was still slim. Now the connections between the twins had been separated, and Trey would no longer be able to send blood to his brother to help him. The next day, I had an ultrasound and there were still TWO STRONG HEARTBEATS. I was discharged on bed rest for one week. Over this week, I knew I would give birth prematurely and just prayed to make it four more weeks. At 28 weeks gestation, a baby’s lungs are developed enough to not need much support after birth. At least, that is what my medical professionals told me. I reached 25 weeks and 3 days and went in for my one week follow up. I had that same feeling I did at that 16-week check-up. They both had strong heartbeats, but there was blood in Jeremiah’s sac and part of my placenta was flapping off of the uterine wall. I turned to my mom and said, ‘I am going to be admitted today,’ and I was.
Prematurity thoughts kicked in. Jeremiah was only weighing fifteen ounces at the time and in order to be intubated, he would need to be at least one pound. Within two hours, my organs shut down and I was dizzy. The entire day, I had been bleeding out internally without anyone knowing. The fast-acting OB-GYN on-call whisked me to the ER with me crying and screaming, ‘Jeremiah is not big enough to survive. You have to leave him in!’ For something who has not bee there, this fear is unimaginable, knowing your baby could die and there is nothing you can do about it.
She delivered my twins within thirty minutes. I did not get to see them because I was put under general anesthesia. During most births, the mom is able to see the baby, even if just for a moment. I was robbed of that, due to premature birth and emergency c-section. Once I woke up, I begged to be wheeled to the NICU to visit. I was assured they were in critical condition, but stable.
Nothing can prepare you to see your child that way. They were so tiny and fragile. You could see their bones and every vein in their body. As all the nurses watched me watching them, I thought to myself, ‘I can’t cry or be weak. I have to be strong for them.’ This was so surreal!
At that moment, I did not have thoughts of ‘why me?’ or ‘why did this happen to my children?’ The only thing I could think was, ‘Please let them live, please let them be okay.’ I would have given ANYTHING to not see them that way and in so much pain. Let me tell you, there is no one on this earth stronger than a preemie!
Someone described the NICU journey as a roller coaster. They left out that you are upside down and there are no seat belts. You take one step forward, only to go five steps back.
The hardest part is, your family and friends do not understand the life you are living now. You become an outsider. There are some who treat you so delicately in fear of hurting your feelings. Others are insensitive and say things like, ‘At least you get to sleep through the night,’ as if I am sleeping, well knowing my children are fighting for a chance at life every night I’m not there. I have also gotten from friends, ‘At least you missed the last trimester of pregnancy,’ as if I would not rather suffer through pregnancy symptoms than to watch my two-pound baby be resuscitated multiple times. Others just completely avoid you because they don’t know what to say.
Here’s some advice for friends and family of NICU parents:
Ask how the babies are and use their names.
Bring meals without asking.
Help with housework or other siblings without asking.
Give gas or gift cards.
When Trey came home in July and we had to leave Jeremiah behind, my depression hit hard. I felt horrible knowing he was there alone and I could not be there like I was before. Jeremiah’s progress was much slower than Trey’s and required a lot more support to breathe. In those moments I felt like a horrible mother.
No one talks to moms about postpartum or PTSD in the NICU. We all know it’s there, but there are not enough resources are put into helping us. We have to take the initiative to get help when we are already doing so much.
There were days I had to bribe myself to drive 45 minutes to the NICU. It was not that I did not want to see Jeremiah. I was tired. I was mentally, physically, emotionally drained. That made everything worse. I thought about just not going to the hospital or only going when I had good days, but I gathered my thoughts and went at least five to six times per week, with Trey in tote. If they could fight prematurity, so could I.
There is nothing about this journey that is easy! Now we are all home after 349 days inpatient, I look back and it was all worth it. I would not change the pattern of events because it made me stronger as a person and a mother. Our journey is not over. We have a ton of specialists and therapy appointments that will likely continue for at least two years, but we made it and we are home!
To the mama going through a NICU or prematurity experience, it is NOT your fault! You are good enough. Bad things happen to good people, but do not let that define you. Stand your ground and advocate for your child. You may not have a medical degree, but a mother’s intuition is all you need!”
This story was submitted to Love What Matters by Jasmine from New Jersey. You can follow their journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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