NEC: “Necrotizing enterocolitis is a serious disease that occurs when the intestinal tissue become damaged and begins to die. It most often affects premature infants. Common symptoms include bloating or swelling in the abdomen, bloody stools, and diarrhea.” -Healthline.com
The day before her one month birthday, two days after Christmas. Two days since we had seen her, as we were all sick and trying not to get her sick. I didn’t even have a voice. Adam had been taking the update calls since talking was so difficult. Kathy, her grandmother, went to the hospital in our place when we heard she was seeming a bit ill. The doctor described it as “some concerns”. Slight fever, paled color, more A’s & B’s than usual; just something to keep an eye on.
It was, for the most part, an average day. Dropped the car for an oil change and tune up, Quinn was at school and we were running some errands together. We called and texted Kathy a couple times, she was staying for a little bit, just until Alice could get some rest. She mentioned Alice seemed uncomfortable, that they had brought the surgeon in to check her out, just for precaution, but the surgeon said she looked ok and left.
Mid afternoon, we received a call from the doctor. She was asking if we were around, and gave an update. They were growing increasingly concerned, and wanted to keep us in the loop. So, of course, we started to get anxious. Adam hung up with her and was giving me more detail. We were trying to decide if we should chance going in with our bad colds. There wasn’t a moment to decide as the doctor called back almost immediately.
“I really think you guys should come in.”
“Ok, Rachel’s pumping (milk), we will be on the road right when she’s done.”
“I really think you should get here as soon as possible.”
“Ok, she’s unhooking now, we will get our son and be there.”
We had to stop to pick up Quinn, but luckily it was on the way. Nervous, but trying to remain calm, we got him and made it to the hospital in 30 minutes. We left Quinn with Kathy in the NICU family area, and went to see Alice.
We turned down her hallway and immediately became more nervous. All of the activity in her hallway- all of it- was in front of her room. I think every nurse that was on that day was peeking in when they could, to see how Alice was doing. She was very popular among the nurses, so they all wanted to check on her.
We walked into her room, put our stuff down, said hi to Alice and got a brief and vague update from the nurse. If you ever get a vague update from the nurse, it’s because they are waiting for the doctor to tell you the details. It’s not that they don’t want to tell you everything, it’s that they are not allowed to. When the update is vague and there is not one smile to be found, and in fact, you notice there are sympathetic eyes giving you the “I’m so sorry” look, you start to get anxious.
The doctor finally came in, after what was probably a decade, (ok, just a few minutes) to explain the situation as they knew it.
Her stomach was distended (swollen and firm), she was clearly sick and they were worried she had NEC. She then explained what Necrotizing Enterocolitis is, and after several questions from us, was recommending we transfer to Chapel Hill. It was possible Alice would need surgery. Unfortunately, the pediatric surgeon at our hospital was unavailable, and possibly unavailable for the foreseeable future. The thought was to get her there as soon as possible, in case her condition deteriorated even further.
My gut told me to listen to the doctor, but my heart was trying to find reasons not to. Chapel Hill is two and a half hours away from home. I was scared because we didn’t really know what was going on, I was scared to transfer her. I was confused as to why we would have to transfer for surgery, why there was only one surgeon, and why they were there earlier but now unavailable indefinitely? There were about 100 questions swirling around in my head, but the doctor needed an answer about the transfer. We would want to get it started now.
Adam and I discussed briefly, I got a glance from Alice’s nurse (who I had gotten to know) and we knew we needed to go.
I was so scared, I was almost numb to what was going on. I started to separate feeling from my decisions, because I had to. Decisions needed to be made based on what was best, not how I felt. Not on the thought that I didn’t want my baby 2.5 hours away from me.
While all of this was going on, we were waiting for an x-ray team. Both of us kept going back and forth to Quinn and Kathy. We eventually sent them on their way. It was decided that Kathy would watch Quinn for the night. We would both stay with Alice and follow her up to Chapel Hill to see what was going on. The x-ray team finally got there and we waited outside the room for the results.
Nothing 100% conclusive. There were what appeared to be air bubbles outside of the intestine, which would be a clear cut indicator of NEC. However, no one was really 100% that that’s what it was. At this point it didn’t really matter as far as influencing the transfer. Not because we had already signed off on it, but because she was clearly getting worse, and fast.
The transfer team
was coming from Chapel Hill via helicopter. They had been on their way, but had to land due to poor weather. So, while we were sending Quinn on his way and listening to x-ray results, and everything else, they were waiting on an ambulance to come get them. It finally got there and they were on their way to us. However, it was still going to be an hour or two. So, Adam and I left to get my car at the shop (Being a hybrid, it is way better on gas) and pick up some clothes and toiletries from the house.
When we returned,
the transfer team had just arrived. Everything was hectic, and to be honest, at this point it’s all a bit of a blur. At some point, the doctor came over to tell us that there was a problem.
Dr. C is a brilliant doctor. She is calculated when giving her information and acutely aware of facial and emotional cues, while giving you any sort of news. She is usually quite calm and even keeled when updating you. However, at this moment, her energy was frantic. She was clearly concerned and upset.
The information, as she laid it out, was this; Alice is quite sick. Chapel Hill doesn’t want to take her due to risk of transfer, they believe she is too unstable. If she stays here, the odds are not in her favor. Basically, she had no chance if she stayed, but there was no guarantee she would make it to Chapel Hill either. We needed to decide if we wanted to take the chance on a transfer still.
There was no question in our minds.
No chance if she stays, some kind of chance if she goes. So she needs to go. The doctor told the transfer team that we ok’d the move, who called their people back at Chapel Hill. Still a no-go. Her stats weren’t strong enough to travel, they wouldn’t take her. Dr. C insisted she be put on the phone with the doctor at the other hospital.
I watched her argue with this faceless doctor. Heard her plead her case. Our case. I saw her face turning red, while trying to hold down anger, yet still come across with passion and urgency. I could tell the doctor on the other side was sticking to their no, while she started getting impatient and desperately interrupted to plead Alice’s case. In actuality, she was pleading for Alice’s life.
I was feeling so helpless, and anger was growing inside as I watched a stranger practically sentence my daughter to death. All I could think is that this person cared more about their stats as a doctor, than giving my baby a chance. (There’s no way to know that this is the case, but to this day, I don’t know why else they would refuse to even attempt a transfer.) I was overwhelmed with various emotions. I had to focus very hard on not grabbing the phone from our docto. Part of me thought, if I could just talk to that other doctor. Tell them that yes, I understand the risks of transfer but please try anyway. Of course, that wouldn’t have made a difference. I was starting to feel hopeless and the sinking feeling of despair was setting in.
So, we are just going to sit here and wait for my baby to die?
All I could think was, Somebody do something!
The transfer team had already gotten her ready to go, and had tried to convince the doctor at Chapel Hill to agree to take her. Dr. C had lined up a surgeon in our hospital in case of an emergency, but they were an adult surgeon which means they were our last resort. It is very different operating on an adult versus a 2 lb baby, and so they would be our Hail Mary. There was still back and forth with Chapel Hill, but at this point they were also calling Greenville. Another hospital two hours away.
I don’t know exactly how things were left with either hospital, but we were told she would get in somewhere. The plan was to take her and start heading to Chapel Hill, but probably we would be diverted to Greenville, as they were more likely to take her. So, the ambulance was going to get on the road, and we were going to head up after them. We should put Chapel Hill in the GPS, but the transfer team would call us if we in fact were being diverted to Greenville.
So, with that, we said goodbye to Alice. Not sure where we were going, not sure if we would see her alive again. We set out hoping for the best but preparing for the worst, with 2+ hours of driving ahead of us.
Story conclusion: The Day We Most Needed a Miracle- Alice’s Fight With NEC (Part Two)