When John and I found out we were pregnant with our first set of twins, a NICU stay was the furthest thing from my mind. My pregnancy had been progressing without any issues until I went into labor at 30 weeks. I ended up delivering Erin and Timothy in a hospital that wasn’t equipped with a Neonatal Intensive Care Unit, so they were care flighted to Baylor Scott and White in Dallas where they spent the first 27 days of their life. 

My experience there was an unforgettable one. Being a NICU parent in like being on an emotional roller coaster that you can’t get off of. I spent 18-20 hours a day holding the twins. I learned what every grown and grunt meant. I knew what Timmy’s oxygen saturation was by the way he positioned himself. I knew Erin loved to eat laying on her right side. Being there so much,  I developed a close friendship with the twins’ primary nurse. She was like family. She supported me as a mom. When I asked the doctor not to put Timothy’s feeding tube back after he pulled it out, she supported me. She made me feel like I didn’t have to ask permission to change a diaper. I helped with everything. The doctors and nurse practitioners on Erin and Timothy’s medical team made me feel involved and kept me informed with daily updates. If I was there they came to see me; if I wasn’t they called me. They asked me what I thought and how I felt about certain things we were doing. 

Two days before the twins were scheduled to be discharged, Timothy had a setback. He was napping in my arms when his oxygen saturation dropped. He remained in the 60’s long enough for his skin to become blue and pale. The nurse took him from me, stimulated him, and provided O2 through a nasal cannula. When the doctor came to talk to me, I just knew our hopes of discharging had gone out the window. The doctor told me that he knew how involved I was, and he would feel comfortable with Timothy going home on oxygen and a monitor. We discussed what that would look like and two days later we were home.

Fast forward to October 24th, 2019. John and I found out we were expecting our second set of twins. This time I was going to be prepared. I knew Tyler had a NICU capable of caring for premature babies, so I reached out to a friend and asked her if she knew a good OBGYN in the area. Once again the pregnancy went as planned until I went into preterm labor at 33 weeks. Less than 4 hours after my first contraction John and I welcomed Thomas and Tresevant into the world.

NICU take two…

I thought I was prepared this time. I had done the NICU thing before and these twins were 3 weeks further along than the first set. Then came that emotional roller coaster I was talking about. On day two Trey was intubated and had a chest tube put in. Mean while, Thomas was breathing completely on his own at 5 days old. 

I thought, “WOW!! Thomas will be home in no time.”

I was wrong.

On day 18 Trey was discharged. I was certain Thomas would follow him shortly. Yet here we are 15 days later, 32 days into our NICU journey, with no light at the end of the tunnel. 

Just like my previous experience, I have spent more time with Thomas than any person on his medical team. I can tell you what each grunt and whimper means, and I’ve spent countless hours starring at the yellow and blue waveforms on his monitor. 

As Thomas’ feeds increased, I noticed him struggling with reflux. Each time he spit up, he would Brady (his heat rate would drop) and he would desat (his oxygen saturation would drop.) I talked to the nurse practitioners and doctors about it, but they refused to acknowledge the events were due to his reflux or that he even had reflux at all. By the time Thomas was taking full feeds by bottle, his reflux had worsened. I continued to press the reflux issue, and the providers finally allowed a change in diet. 

That’s right…as a NICU parent you don’t even have the ability to make choices about your baby’s diet. 

My frustration started to grow when I felt like I wasn’t being heard by my son’s providers. I was the one consistent person in his life and knew him better than anyone. When I mentioned the reflux in his second week of life I was brushed off as if I had no experience as a mother or knowledge of what reflux even was.  I informed them that two of my other children struggled with reflux and GI issues in their first year of life, and they both required medication for it. Yet my concerns were still unheard by his providers. I could see there was a correlation between him refluxing and the timing of his Bradys. During week 3 we introduced rice cereal and it seemed to help with the reflux some, but it intensified a gas and constipation issue that had been progressively getting worse. Each day crept by. Thomas would be doing amazing and then BOOM! He would go 18 hours without pooping and be miserable. As he strained to have a bowel movement, he would have an event to restart his countdown.  An event can be classified as a drop in O2 saturation for more than  5 seconds, a drop in heart rate for more than 5 seconds. After meals, Thomas would scream out as he drew his legs up until his body formed a tiny ball. He would get so tense that the muscles in his back felt like a brick. A gentle sway back and forth is the only way to provide any comfort for him when this happens. As Thomas would bear down to poop you could see him take several hard swallows in an effort not to reflux. During this time, Thomas would desat and occasionally Brady, but he would always recovered on his own without stimulation from anyone. That means if he wasn’t hooked to the monitor, you would have never known it was happening.

I continued to press the gastrointestinal issues with his providers. Finally, on day 27 they decided to put him on two medications to help with his reflux and motility. On day 27 I also had a conversation about taking Thomas home on an Apnea monitor. I was pissed off because the previous day I was holding him after a feed, and he had an event. Only this time not one nurse or medical professional even entered the room to check on him. When I questioned his nurse about it, she was unaware that he had one. She was at lunch and other nurses on the floor were supposed to be watching him. This was beyond upsetting. How could something that was considered so clinically significant and warrant 5-7 more days in the hospital not even get the attention of medical staff.

When I questioned it I was told they watched it on the central monitor and knew he would be ok. 

They knew he would be ok, because he has never needed any medical intervention to recover.  

I found this odd, since every other time it happened a nurse ran in the room.

In the following days, I talked with the doctors and nurse practitioners about bringing him home, but they were quick to remind me of their standard of care. A standard of care that I couldn’t seem to get a paper copy of for days. A standard of care that when I finally did get a copy, contradicted itself with each flip of the page. One page considered his events clinically significant and restarted a 7 day countdown, while another page might say it only required a 5 day countdown. One part stated he could go home on an apnea monitor, but the doctors informed me there were none available.  I asked them if their standard of care meant delivering medications late, or giving me floater nurse from other areas in the hospital because my son isn’t critical enough for a NICU nurse. Does it mean him being left in a bed only to be picked up to be fed if I’m not there? For 3 days, I had the same conversation with them. I was told over and over. 

“We are just waiting for him to grow out of it.”

Grow out of what? 

“He could be in here up to 42 weeks.” 

What? How was that even possible for a baby that had been breathing on his own since 5 days old. A baby that was eating his entire feed without any issues. A baby that was gaining an ounce a day. For a baby that had never had an apnea episode in his 32 days of life or required tactile stimulation for any of his events. 

When I pressed them on the possible discharge date, it was a grey area. I could never get a clear answer. It seemed as if their response was always, “What if you took him home and something happened? As a hospital we would be liable.” 

That was it. What it all boiled down to was the legality of the situation. My son was being held hostage at the hospital because of “what if’s”. My son was being kept from family, from his twin brother. I told the hospital I would be willing to sign an AMA. Their response was that child protective services would be called.

I was blown away. Once again I thought to myself, “I’m being held hostage at the hospital.” The moment Thomas entered the NICU I essentially lost my parental rights. I was asked to sign papers saying that I would be financially responsible, but I wasn’t allowed to make any medical decisions for him. 

I couldn’t believe it.

I am a mom to 7 incredible tiny humans. I already had experience with twins and the NICU, yet me choosing to take my son home where he could be loved and cared for outside of a hospital room made me an unfit mother. Me wanting to take him home so he could breastfeed beside his brother at night instead of being fed by a stranger’s gloved hand holding a bottle was all because of a “what if”. 

In a million years I never thought this would happen. I never though I would be forced to wear a mask to hold MY SON. I never thought I would be in a position where I wasn’t allowed to make decisions for MY CHILD. What gives a doctor, who sees my son 5 minutes a day to listen to his heart and gut, more rights than me, his mother who sits with him for hours on end 7 days a week?

When John and I found out we were pregnant with twins again, I thought I was prepared. 

But I wasn’t prepared for this! I wasn’t prepared to be held hostage in a hospital…