13 days at home

13 days at home. That’s all we got before we wound up back in the hospital, wondering where things went wrong, how and why it had to be this way.

Our time at home had been wonderful. Though extremely difficult, especially the nights, and trying to manage a medically fragile baby along with three other toddlers in the house. It was challenging to say the least. I had the help of a nanny on the days Robby was at work. This allowed me to take Maggie to doctor's appointments and solely tend to her as needed.

With Maggie, we were dealing with proper healing of the g-tube site, learning how to master feeding pumps, the pain caused by reflux, making sure she was pooping, breathing, getting enough to eat/not getting enough, and just overall OKAY.

I really wasn’t thinking about the future at this point. Every day I was simply trying to survive. Maggie’s breathing was rapid and terrible, and while at home, her apnea only seemed to be getting worse. I began excessively researching and learning about obstructive apnea. This is what I suspected she had.

It’s incredibly difficult having an unhappy baby. I thought bringing her home would be full of so much joy and the end to months of hardships already, but I was very, very wrong. No, my baby wasn’t happy because she was suffering, and I didn’t know how to help her.

That feeling of helplessness is one I will never forget.

So, after a terrifying episode of Maggie crying so hard she desatted LOW and became very pale, we took her to the ER. This was after 13 days of being home. It was about ten o’clock at night.

They got us in right away. Within minutes, after removing her clothes, they saw that she was retracting all the way back to her spine. The moment I saw it my heart dropped to my knees. I hadn’t noticed it before - I didn't know how long she’d been breathing like that, working SO hard to breathe, because when you don’t know what to look for, it’s easy not to notice those things.

They put her on high flow CPAP, got an IV started, and let her rest in her new room. This was the main thing I was grateful for - having a room that allowed us to stay with her all night. In the NICU we weren’t allowed to do these things, and Maggie did not have her own personal room.

That night, Maggie’s primary doctor came up to chat with me all about the tracheostomy and the Nissen Fundoplication. I listened with only one ear - the trach had been something I greatly wanted avoid. I was desperately asking for other non-invasive options. There had to be another route!

So, we spent a long week in the hospital. Every day I felt like they were just waiting for when I finally decided to get the tracheostomy for Maggie. But I never relented. In reality, I was fighting against a brick wall that wouldn’t budge. Every day I would come in with new information for the doctors. “Can we try this? What about this? Can this be another option for her?” But every option led down a dead end road.

A sleep study confirmed obstructive apnea, as was suspected, and a bronchoscopy done at bedside showed Laryngomalacia/Tracheomalacia, narrow, floppy airways and swelling of the top of the trachea due to reflux. This was a hard pill to swallow. There were a lot of issues that came with this diagnosis. I didn’t want to accept what was happening.

So I took her home.

After attempting the placement of an NJ tube to see if it would minimize the reflux and help reduce the swelling of the trachea, I said no. I took her home on Erythromycin and Pepcid. Maggie has gastroparesis so they were thinking the EES would help move things along quicker and minimize reflux. I was at least grateful for some sort of plan.

In the 24 hours that we were home, I chatted with Maggie’s doctor over the phone. I told her that I was terrified of the trach. Please help us find another option. Please help me feel like I’m not killing my baby, letting her suffer, but I’m just trying to find an option that wouldn’t put her under for surgery again.

She warned me that there were many risks to not doing the most invasive option. Apnea has taken many people’s lives in the past. What if she had an episode so bad that she didn’t come back from? Were we willing to take that risk?

Her doctor told us, “we usually don’t mandate the type of care the parents want for ‘these’ babies. If this is what you want, then it’s all up to you.” I was basically being told that if I was okay with my baby potentially dying then it was all my choice. This was not an okay scenario to be in.

By that night Maggie began developing a “stridor” noise. It’s common with Laryngomalacia. She literally sounded like an elephant while trying to breathe. At this point I was getting desperate.

Later that night I was on the phone with Maggie’s doctor. At the same time, Maggie had another uncontrollable crying fit where her heart rate dropped to 90 and pulse ox to 34. I had the doctor on FaceTime and she could see how pale and disoriented Maggie looked. She instructed to up her oxygen. We bumped it to 3 liters. Still nothing. We bumped it to 4 liters. Soon, after few minutes, she started to come back.

Maggie fell asleep quickly after that and I was hesitant to disturb her. At this point, I was packing our bags for the hospital. It requires a lot to get Maggie in the car. She’s on a continuous feed for ten hours at night plus the pulse ox and oxygen.

About two hours later, during which Maggie’s stats were stable, she woke up again and we tried to get her in the car seat. She began crying and we were terrified of another desat. She was hovering in the 80s and 70s. We couldn’t get her calm in the car seat. Our other kids were asleep, and we were trying to arrange someone to ride in the back of the car with her on our way to the hospital. I knew I couldn’t leave her in the back while I drove twenty-five minutes to the hospital and her not have another episode. We then realized that her portable oxygen only went up to two liters. She was currently on four.

An ambulance was called. It was our only option. They let me hold Maggie while I rode in the back with her. She was trying to sleep but cried every 5-10 minutes. She was very sad, in pain, and could not breathe well.

During the car ride, her nose started bleeding. The EMT asked me how long she’d been on 4 liters. I told him a few hours. He said that’s too much for a baby of her size, and that’s why her nose was bleeding. This made me feel absolutely terrible. We just didn’t know these things.

We were admitted into the ER, but they were not as swift to admit us this time around. They didn’t have enough nurses available on the night shift so we had to wait until morning. So we were stuck inside a cramped ER room on the most narrow bed, and it was freezing cold.

Maggie was hooked up to so many wires and her nose was still bleeding. But I got her to sleep. And slept, she did. I did not.

Hours ticked by. My attempted sleep was interrupted by desats, crying, nurses and doctors coming in and out. Maggie got her first IV around three in the morning. She didn’t even wake up, not even a flinch. She was that exhausted. By four AM I convinced the nurse to let her eat. It took some time, but we got her whole feed set up and started. I was grateful for that.

Our story continues in the next post titled, “Tracheostomy”.