Last updated on December 14th, 2023 at 09:58 pm
Several years ago my wife was diagnosed with PCOS and we were told that we probably would not have children without help. We tried for several years and were unsuccessful and eventually succumbed to the fact that we would never have children of our own. Then about 3 years ago I started a new job that had excellent medical benefits; these benefits included fertility treatments. We talked and decided to give it one more shot to see what would happen. My wife started taking fertility injections and we went in for our first attempt, which was unsuccessful. The next month we went in again for our final attempt and we found out we were successful. A week later we found out that not only were we successful but we were going to have twins. I cannot begin to describe the thoughts and feelings that were going through my head. To say the least, we were excited and nervous at the same time.
Fast forward about seven and a half months and our boy girl twins were born at 34 weeks, six weeks early. My son, Lucas, was born first and he was a little guy weighing in at 4 lbs 15.5 oz. My daughter, Mackenzie was little but bigger than her brother, weighing a whole 5 lbs 5.5 oz. The both were doing very well. They were doing everything that was expected of them and we were very optimistic. Then three days later, just before we were getting ready to leave the hospital for the night, Mackenzie projectile vomited everywhere. Her nurse said that she was overstimulated for the day and basically quarantined her to her incubator. We ultimately went home for the night and couldn’t wait to get back the next day to see our little angels.
The next morning we got to the NICU and spoke with their nurse for the day. Our nurse was a brand new nurse and was being shadowed that day. We welcomed her to the NICU and went to check on our littles. Lucas was doing what 4 day old babies do, just lying in his incubator and looking around. Mackenzie was also laying in her incubator but she didn’t look like she was feeling well. The nurse told my wife that she was just getting ready to do her checks on Mackenzie and asked if she wanted to help by changing her diaper. My wife jumped at the chance to interact with Mackenzie seeing as how we had to leave her alone the night before. As my wife was changing her diaper she noticed that her stool had a little redness to it. My wife questioned the nurse about it and the nurse took it to the neonatologist that was on duty that day. The next thing we know the neonatologist comes up to us and tells us that he wants to run some tests on Mackenzie because there is blood in her stool.
My wife and I went over to tend and bond with Lucas while the hospital staff tended to Mackenzie. They drew blood and brought in an x-ray machine and we were told that the doctor would be with us soon. Finally the doctor came over and told us that Mackenzie has necrotizing enterocolitis (NEC) and starts asking us personal history questions. We ask what NEC is and he does his best to explain it to us. However, the doctor is very hard to understand because he doesn’t speak English very well and he is using a lot of technical terms. I came away from the conversation understanding that my daughter was dreadfully sick. She was taken off of formula and put on antibiotics, and another tube was shoved down her nose to drain the bile from her stomach. They also shaved one side of her head for a new IV because she kept blowing lines. We were also told that we could not hold her and that she had to stay in her incubator, but we could touch her through her portholes. My wife and I went to lunch to make a ton of phone calls to tell our family that something has gone wrong and that we would keep them posted as we know more.
After lunch, Mackenzie’s neonatologist sat down with us and showed us the x-rays from earlier. He explains to us that they think Mackenzie is allergic to the milk protein in her food. As a result of this allergy her intestines swelled which created microscopic tears in her intestinal wall. This allowed the natural bacteria in her gut to infect her intestine. He tells us that she will be kept off of food until the infection is cleared up by the antibiotics and that the only way they can keep an eye on the infection is by x-raying her every eight hours. He told us that NEC is a very serious infection and that we hope that her bowel doesn’t perforate. If that happens they would have to do emergency surgery and in his experience if that were to happen it could be deadly.
The rest of that day I spent sitting by my daughter’s side, holding her little hand through a porthole in her incubator and talking to her. I will tell you that I felt so helpless. A father is supposed to be the protector of his family, and I knew that there was nothing that I could do but sit there and watch my daughter fight for her life. I don’t know what Mackenzie was feeling or what thoughts were going through her little head but the look of determination on her face gave me hope. Later that evening my wife and I went home to get some rest. While my wife went to bed I got on the computer and started researching everything I could on NEC. In hindsight I probably shouldn’t have because I scared myself. I knew that her condition was serious but then I started reading about the monster that is NEC. NEC is the second leading cause of death in infants and a significant percentage of infants that contact NEC ultimately succumb to the infection. [Click here for the facts on NEC] I finally turned off the computer and went to sleep and I didn’t tell my wife about what I had learned until after my little girl came home from the hospital.
The next day we were told that there had been no change in her status. We were also approached by Mackenzie’s nurse from the day before, the new nurse. She wanted to check on her and told us that she had called the NICU last night three times to check on her; Mackenzie was the first baby that she had taken care of that made her so upset she went home and cried over her. This really touched our hearts and made me realize just how hard our nurses’ jobs had to be.
The next day was the same, we would come to the NICU in the morning and would be told that there was no change on the x-rays, which was a good thing. We would interact with Lucas and I would sit and talk with Mackenzie while I held her little hand and she would lay there and smile at us. We would go home and the end of the day and do it all over again on the next day. Then one day we came in and the doctor showed us the x-ray from that morning and it showed a slight improvement from the one the night before. This gave us renewed hope for better things to come and that night it was a little easier to go home. From that day on every day brought us better news. Our little girl was getting better.
Then on my very first Father’s Day, almost a week after Mackenzie got sick, her night nurse asked me if I wanted to hold her. I immediately jumped at the chance to hold her. We still had to be careful because she still had quite a few tubes and IVs but we pulled a chair up to the end of her incubator and managed it. Then I got the best Father’s Day gift ever. The nurse brought Lucas over for me to hold as well. Not only was I able to hold my daughter for the first time since she got sick but I was also able to hold both of my twins for the first time together. This was also the first time that they had been together since they were born.
Exactly one week after she got sick, Mackenzie was better. The doctors did a test to make sure the infection was gone and we started her back on food. She was put on special food, Neocate, which was amino acid based to account for her allergy. She started eating again and we started to slowly increase the amount of food she was eating. During this time, Lucas got to come home from the hospital so now it was more of a challenge to go see Mackenzie. One of us would have to stay home with Lucas and then go up to the hospital later in the day.
One night about a week after we started feeding Mackenzie again, she violently vomited again. The doctors and nurses started wondering if she wasn’t tolerating the formula that she was on. They started talking about changing her food to a different formula. In the meantime she continued to get sick every time she ate. Finally after several other test and specialist they ordered another x-ray to see if her infection had come back. The x-ray showed a possible problem with her small intestine, the doctor said that it looked like it was turned the wrong way. She wanted to do surgery to fix the problem and to look for any additional problems. They were also going to place a central line in for her IV because she still kept blowing lines, they even shaved the other side of her head to try there.
The next day, we walked our little girl down to the surgery floor of the hospital and then sat in a waiting room for a couple of hours waiting to hear news from the surgeon. Finally we were notified that the surgery went well and that there wasn’t anything wrong with her small intestine but they had found two strictures in her large intestine. The surgeon said that she had to remove a section of her large intestine as well as her appendix. We later learned that the strictures were a result of the infection and they did not completely close off her intestine, which explains why it took so long for her to start getting sick again. A couple of days after her surgery she was put back on food. This time they changed it to Elecare just in case, but our problems and stay at the NICU was not done yet.
Three days after her surgery my daughter started having tremors. At first everyone thought it was just her system coming off of the pain meds from her surgery. Then one day the doctor asked if she was still having them and we replied that she was. He ordered more tests because the pain meds should have been out of her system by then. The test showed that she was having seizure activity in her brain. The neurologist ordered a series of test to see why she was having this activity. They did MRIs, a spinal fluid test and blood tests to determine why she was having the tremors and nothing could be determined.
During this testing her heart rate was also going really high. The cardiologist said that sometimes this happens with the central line, we later learned that she has supraventricular tachycardia (SVT), which means her heart beats very fast sometimes for no good reason. So she was placed on seizure and heart medicine. Finally after 47 days in the NICU with one serious infection, one surgery, and visits from just about every specialist in the hospital, Mackenzie got to come home from the hospital. But our journey wasn’t done. We still had to monitor her heart rate and give her medicine for her seizures and SVT. About six months after she was born our pediatrician gave us the ok to attempt to wean her onto regular formula. She never had a problem with the transfer and we were able to get her off of the special formula. At that time we were also able to wean her off of her seizure medication. My twins recently turned one and it was a very special day for us considering the fact that we didn’t know if Mackenzie was going to make it or not. Mackenzie finally got off of her heart medicine as well.
The doctors never were certain why Mackenzie got NEC; most babies that get NEC are born way earlier than 34 weeks. We are not convinced that she ever had a milk allergy; she took a long time to pass her “plug” and that’s what we think happened, but we’ll never know for sure. Also we never learned why she was having the seizure activity; the best explanation we got from her neurologist is that sometimes the body does weird things when it is under a lot of stress. She will have to see a cardiologist until she is at least an adult because the SVTs can come back during puberty. The only long term side effect of the NEC is that we will have to continue to monitor her for more strictures to form. Otherwise Mackenzie is a strong healthy one year old. She eats whatever we put in front of her, she loves food. All I can say is that I will never forget the look of pure determination on her face. I like to think that she looked Death in the face and told him off. She definitely has the attitude…
If I could give any advice to anyone that is going through this or knows anyone that is going through a similar ordeal it would be don’t ever give up hope and trust in the experience of your doctors and nurses. Your littles didn’t just steal your heart when they were born, but the hearts of every doctor and nurse that they will have in the NICU.
Editor’s Note: NEC can be a very fast-moving disease and needs to be treated early. If there is any concern that your child may be suffering from NEC, call your child’s physician or go to an emergency room.
Anthony Thomas is the proud father of boy girl twins, Lucas and Mackenzie. He works nights in the security field and spends most of his time off with his “littles”. Please feel free to contact him on Facebook or email him if you have any questions.
