We've finally come up with appropriate nicknames for our trio as we won't be posting names here.
Baby A is our little Seal- he smiles in his sleep all the time, makes little barking sounds when he is rooting around for food and his sister thought the seal sticker was the perfect one for his isolette.
Baby B has some seriously spiky hair, quite like a lion. So he will be The Lion, one of the twins. His nickname suits him even more with what he has gone through over the last two days.
Baby C is an amazing eater. He sucks breast milk down through his bottle and nurses like a professional. He can almost take a full feeding (36 cc's, or about an ounce) at the breast. For his isolette sign, we picked the Elephant.
Now I understand why having your babies in the NICU can be called a "Roller Coaster". I can easily say that yesterday was one of the worst and also one of the best days of my life.
But I am getting ahead of myself. Let me begin at the beginning ...
Yesterday morning, on the boys' sixth day in the world, my mom and I came in for the morning feedings. When we arrived the nurse told us that all three of the babies would have their phototherapy lights off as their billirubin levels had normalized. This means they could be held much more again and got to take off the masks they so loathed. Great news! Also, since the twins were taking their maximum feeds, their IV's could be removed. Another step closer to coming home. (Elephant is just a day behind on feeds and had his IV removed last night.) I felt like a child on Christmas morning! So many wonderful things happening.
After I nursed the Seal, we removed his IV and put him into his isolette for a nap. I was excited to nurse Lion as he'd been too sleepy at 8 pm the night before and I had not held him. T, our amazing nurse, and I went to our Lion so I could help her change him and she mentioned he'd had a hard night, fussy and seemed to be hungry, but after he was fed, he was fussier. They were watching him closely and he seemed peaceful when we arrived. As soon as we opened his diaper, we saw blood. T immediately called the neonatologist who ran into our room. I looked at her and said, "Is it NEC?" She said, "It could be. We need to run some tests, but bloody stools are never a good thing." I asked if she'd ever seen this kind of stool and it was not NEC and she said, "Maybe... once." And I burst into tears, watching the room's energy change as the doctor ordered an x-ray, blood work and a discontinuation of all oral feeds. His IV was staying in, and they were going to start antibiotics.
I have read extensively about NEC or Necrotizing Enterocolitis as it can become very serious, very quickly in premature babies and multiples are at a higher risk. It is a disease that begins after babies start feeding, and the cause is not well understood. The baby often presents with fussiness, distended abdomen, vomiting or bloody stools. An x-ray is needed to diagnose the disease. It looks for air in the liver caused by pockets or areas of necrotic (dying) tissue in the bowel. It can also cause apnea episodes, drops in the heartrate and desaturation of oxygen, all of which can call for intubation. They cannot be put on CPAP as it pushes air into the body and we do not want any air in his tummy, so it would be straight to a ventilator. The babies are started on antibiotics, their feeds are discontinued for 7-10 days and a suction tube is put into their nose to pull out any stomach contents and examine it. It some cases, it can require immediate surgery which tries to cut out the infected tissue in the bowel and sometimes bring the intestines to the surface of the abdomen. Of course, surgery on a premature infant is terrifying and must be performed by specialized nurses, surgeons and anesthesiologists. Most NICU families know what NEC is and are terrified of it.
The x-ray was performed in his isolette and we waited while the doctor obtained and read the films. It was the longest 20 minutes of my life until Dr. C walked in and said, "He has NEC." I was nursing Elephant when he came in, and could not even speak. I just looked at the baby at my breast and let my tears fall onto him while he contentedly ate. Dr. C said that he felt we'd caught it early, but we do not know how NEC will progress until we have at least a few x-ray images to compare to one another.
I kept saying, "Can he survive? Will it get worse?" and he said, "I hope this is a very mild case. Stay tuned is all I can say for now. If he is going to get sicker, we will see it quickly. He will start to look different, his vitals will become unstable, and he will change his behavior. I will let you know more when I know more. I called a surgeon from another hospital who does NEC surgeries all the time, and he's coming to read the next x-ray. We may need to transfer him to Children's or another hospital. I will come back soon. I am so sorry this happened."
My mom and I were left with our babies, sobbing, with our most caring nurse, T, who filled in the blanks on any questions we had. She reassured us that the best thing he had going for him was he looked healthy, and had stable vitals. If he had not had the bloody stool, she said, no one would know he is sick. We waited and my husband arrived, who'd been dropping A off at preschool, and I had the unbelievably hard task of telling him the news. We stared at each other and he walked to Lion, telling him how strong he is, and how much we love him. The next few hours while we waited for the next x-ray were torturous. We watched Lion like hawks, staring at his monitors, and were reassured that his vitals did not crash and he did not seem to be in pain.
The surgeon, Dr. H, arrived. He is a man of maybe 70 years, who was the chief of surgery at Children's for many years. He explained what he is looking for, and that the next x-ray would tell us a lot. He said, "We do not want to see anymore air in the liver, and certainly no air in the free space of the abdomen. That would require immediate surgery as it would indicate a bowel perforation." He assured us that if he thought it was necessary, he would have him transferred but he hoped he could stay with his brothers. He promised to visit him each day and consult with our neonatologists for updates frequently.
The x-ray began while he was here and it was a digital x-ray which allowed us to read it immediately. They had to position him on his side and hold his arms over his head, which made him scream, but we had to just stand back and soothe him with our voices as best we could. After it was over and Dr. H was able to see the images, he smiled. He looked at us and said, "These look quite normal! With NEC, we usually see a rapid progression and this is very reassuring. I think we should be cautiously optimistic." He told us to call him for anything, but he did not think our son would need surgery, just antibiotics and an empty tummy for 7 days. We thanked him over and over, crying, and sat down next to our sick baby, urging him to keep healing.
The rest of the day we clung to our babies we were allowed to hold, sat next to our little fighter and sang to him, touched his face, rubbed his soft, fuzzy head. I cursed the disease that was inside his body, wishing I could take all of his discomfort away, wishing he would keep healing. We were so encouraged by the doctors' comments and examinations, but we know how NEC can be, and kept ourselves cautious. He had an x-ray scheduled for 10 pm that would provide us with a little more info.
I went home after softly begging my son to heal, to keep his fighter spirit. I needed to spend some time with our daughter who has been missing us terribly. My amazing husband has not left the hospital in two days and sleeps with our boys each night. We do not feel that we can leave them alone right now, and so one of us is always hereI came back three hours later for the 8 pm feedings and to be with Lion. He had another x-ray that evening and we wanted to talk to the neonatologist after he read it. I tracked him after 11 pm and he came in to tell us the best news we'd heard all day: his x-ray was normal and his blood work looked great! He said if we did not know he had NEC from his previous symptoms and x-ray, he would not be able to tell. He felt hopeful he would continue to improve. Tears of relief came to us, and while we knew this disease can be so sudden, he seemed to be fighting hard to heal.
This morning I came in and his first x-ray also looked "stone cold normal" according to the surgeon, Dr. H. He decided to just check in on him this weekend but he feels great about his progress! We are overjoyed! After his last x-ray this evening and blood work, Dr. C came in and said he feels Lion is "out of the woods"! Again, things can change so quickly, but his body seems to be going in the right direction. Leaving his digestive system empty while administering strong antibiotics is working to reverse the damage. Had it not been caught so quickly by the excellent nurses here, and had the doctors not responded with knowledge and care, things could be very different right now.
Now, the plan stays the same: he will be "NPO", which means nothing by mouth, so no breast milk at all for seven days from the onset of the disease (Thursday) and strong antibiotics. All of the nurses and doctors have repeatedly told us that they were thrilled he was on breast milk only; babies on formula have a much higher risk of NEC, so when his feedings do start again, we can feel good. He will start very slowly, receiving only a few CC's (1/10 of an ounce) while we see how his bowels react to the restarting of milk feedings. In the meantime, he is on IV nutrition called TPN which delivers his calories and lipids. Unfortunately, since yesterday evening, he has started to be truly hungry, rooting for a nipple when it is time to eat, needing to suck more on his paci to feel calm, and crying very hard when we hold him and cannot feed him. It is so unbelievably difficult to want to nurse him, make him feel satiated when I know that would be the worst possible thing to do. All my maternal instincts are wrong in this case, and I've taken to singing to him through his hunger. He seems to like Coldplay.
For now, we are feeling like things might be all right, but are still watching him extra vigilantly, keeping eyes on the babies' monitors and watching for signs of NEC in his brothers. So far, they both are doing extremely well, still nursing often and taking one ounce of breast milk 8 times a day. I am so happy to say I have about 80 ounces of milk in the freezer, waiting for when Lion is ready to eat again. I cannot wait to nourish him when his body is ready.
This was one of the best moments of the day:
Seal and Elephant are dressed! They seem to have shown they maintain a normal temperature quite well and are probably moving to an open crib to co-bed tomorrow. Of course, Lion will be in his isolette while he heals and has an IV, and we know we will be aching for him to join his brothers. They haven't seen each other since birth and they were in quite tight quarters for 7 1/2 months!
Please keep our Lion in your thoughts and help us urge his body to keep fighting, keep healing and that he will feel comforted.