From one day to the other, Zoe became very swollen. It was a shock to see her looking like a little balloon, with an IV in her scalp plus three others in her extremities. We were reminded that this was a common side effect of the drug that had been used to paralyze her. We were explained that her body would eliminate the additional fluid and that she would receive diuretics to accelerate this process. We were told that most babies went back to their normal size in a matter of a week or so. None of this made it any easier.
A week went by and she was even puffier. She had difficulty opening her eyes and moving her arms and legs. The PICC line came off, and because she was so swollen they could not put another one in. Instead, they asked the surgeon to put in a central line or broviac, which goes directly to a vein in the chest. She received fluids, nutrition and some medicine through it, but she would still need IVs because several drugs that she was receiving could not be administered through the same line.
It broke my heart to see her like that. I said to myself that although it was very shocking to see her so swollen, it was not a real threat to her health. When I mentioned this thought to doctor Valdez, one of her neonathologists, he shook his head. “Well, no. It is a problem because all that fluid is extra weight for her lungs, and her lungs are still recuperating so we don’t want them to have to work harder. To give you an analogy, it’s like if you lie down with a puppy on your chest. Did you ever do that?” he said.
“I did it once, with my dog when it was a puppy. At the beginning it’s OK, but then you start to run out of breath because of the added weight. That is what’s happening to your baby,” he said.
The doctors reduced the amount of fluids she was receiving and increased the diuretics. A week later she looked as swollen as before.
One morning my phone rang as I prepared breakfast, but I didn’t bother to pick up.
“It’s probably my sister,” I said to Jean-Marc, “I’ll call her back later.”
We finished eating and I checked my phone. I stared at the tiny screen. I had two missed calls from the NICU, plus a voicemail and a text message asking me to call doctor Valdez. It was the first time we received a call from the NICU.
“It has to be something serious,” I said to my husband. I could see he was also very worried.
They put us through to the doctor immediately.
“The baby has an inflammation in her abdomen. We think she might have perforated her intestine and the inflammation can be caused by loose air or stool,” he said. “We’ve asked the surgeon to place a drain to let the air or stool out. We’d like to do it today, and we need you to sign the authorization as soon as possible”.
In the NICU, the doctor explained that intestine perforations were frequent in preemies and were caused mostly by stress or as a side effect of certain medications, such as the one she received to try to close the PDA. Many times if the perforation was small, it healed on its own. If not, surgery was required.
When the drain was put in on Zoe’s belly, on the right side, a significant amount of stool came out.
“Zoe is very strong,” said our nurse. “Even with the stress of the perforation and the surgery, her vital signs are great and she’s doing very good on the respirator. Hopefully now she’ll start moving forward.”
A couple of days later, a purple spot appeared on her abdomen.
“We’re keeping an eye on it,” said doctor Diaz. “So far her vital signs are good, so we’re hoping it is an inflammation that slowly disappears.” By the tone of her voice, she didn’t seem to believe there were many chances of this happening. As the days went by, the spot got bigger and darker.
“What are we going to do about this?” I asked doctor Diaz.
“We have two options: do an exploratory surgery or wait and see,” she said.
“What do you mean by exploratory surgery?”
“We open her, see what’s going on, and fix it.”
“So why don’t we just do that now and get it over with? She’s not getting any better.”
“The surgery is a risk in itself. It’s added stress for the baby, and there’s always the possibility of an infection. She is still very small. So as long as her body is not showing signs of distress, I’d like to wait. Even if we end up doing the surgery in five days from now, she’ll be five days bigger and stronger.”
On Friday I went for lunch with a friend, and by the time I was back in the NICU, the purple stain had expanded considerable to her left side. The settings on the vent were very low, but all I could see was her bulgy purple little belly.
That evening it was difficult to leave the NICU. Her night nurse was Jacques, a very senior and proficient nurse who had taken care of her in the past. Every time Zoe was in Jacques’ care, I had the reassuring that nothing bad would happen to her. I told him how concerned I was. “I promise I will keep a very close eye on her,” he told me when I left. “Try to get some rest.”
I feel asleep that night with images of my Zoe’s swollen purple belly in my mind.
The phone rang at 4 in the morning. I knew what was going before doctor Diaz said a word.
“The baby needs surgery. We believe she perforated her intestine again. The surgeon will arrive soon. I’m really sorry to call you in the middle of the night.”
“How is she?”
“She’s OK, but her vital signs are showing that her body is in stress, we did blood tests and x-rays and we need to act fast.”
The ride to the hospital was short and silent. The night was cold and damp. We took an empty elevator to the second floor, quickly passed security, and entered the NICU.
All eyes inside the unit were on Zoe, who looked terribly small and alone in her isolette, surrounded by nurses and doctors. Her belly was bigger and very dark. A couple of nurses hugged me and told me she would be fine.
“I’m doctor Neville, the surgeon,” said a tall, thin woman with short blonde hair. “As soon as you sign the paperwork, we’ll get started.” She smiled sympathetically.
We signed on the dotted lines, skipping the sections about risks associated to the operation. We were learning not to waste energy on worrying about all that could go wrong.
“Do you want to touch her and tell her that everything will be all right?” said Jacques, stepping to the side so that I could reach the isolette.
“You’re strong, you’re brave, and you’re a fighter. I love you,” I told her in Spanish as I caressed her hand.
Jacques gesture reminded me that in spite of the uselessness I frequently felt, I was Zoe’s mom. There might be dozens of nurses and physicians caring for her, but it was I who had the privilege of caressing her and reassuring her. I was the only person in the world who could do that.
Minutes later we left the unit to wait in the family area, where the time on the clock dragged on, slower than ever. I prayed in silence that I would have many more opportunities of holding her hand and making her feel better.