As part of Prematurity Awareness Month, we asked Laura, our director of NICU Ambassadors, if she would share the story of her preemie Joseph, a surviving twin, and the preemie “issues” that she has witnessed first hand. Laura helps NICU Ambassadors across North America work with and deliver help to families in the NICU, but being the mom of a preemie helps her understand all too well many of the problems that preemies face. By sharing her experience, she hopes she will help parents, their friends, family andsupporters better understand what it is like to be a parent of a preemie.
Necrotizing Entercolitis. NEC. A disease that every NICU parent learns to dread from the first days
in the NICU. It is a disease that can take the life of an innocent preemie in a matter of hours. It comes without warning. It is a disease that every NICU parent just holds their breath on – hoping and praying it doesn’t attack their child.
I learned about NEC within the first few days after my boys were born at 24 weeks gestation. I knew they were at an increased risk for the disease because of their extreme prematurity. Twenty-three days after their birth, our son, Campbell, passed away because of complications from bowel perforations caused from a medication he received. While it wasn’t NEC, it was an awful experience to watch how quickly bowel perforations can take the life of your child. No parent should ever have to bury their child.
With each passing week that Campbell’s twin brother, Joseph, spent in the NICU, I knew his chances of having NEC slowly decreased. When we passed Joseph’s due date, I mentally crossed NEC off the list of diseases I needed to worry about Joseph having. Whew. We had made it without experiencing NEC.
After four and a half months in the NICU, Joseph’s carbon dioxide levels became dangerously high. He was transferred to one of the local children’s hospitals for further testing. It was quickly determined that he was aspirating into his lungs. He underwent surgery to receive a gastrostomy tube (g-tube) and had a fundoplication. Within days, his carbon dioxide levels returned to normal and Joseph recovered from surgery.
A couple of weeks post-surgery, Joseph was learning how to take a bottle again while also receiving his feeds via g-tube. He was moved to the non-critical side of the NICU and we were on the fast track to finally bringing Joseph home.
We were scheduled to bring him home on a Monday, about five and a half months into our NICU stay. The week before, my husband and I spent many hours at the hospital taking all of the required classes, learning how to mix Joseph’s formula and medications, getting the oxygen equipment and apnea monitors set up at our home, and getting very excited that we would finally be bringing Joseph home.
The Thursday before discharge day, the nurse called me at work (my husband and I were team teaching middle school and high school chorus at the time) and said that Joseph was running a small fever and was having diarrhea. To be safe, she was doing a complete septic work up but provided the tests were negative, he would still be discharged on Monday. When we saw Joseph that afternoon, he had been given an IV, was still having diarrhea, and was very pale. I kept telling myself that everything was okay with him – mainly because I was so desperate to bring him home. I think I knew in the back of my mind and in my heart that something was wrong.
The next day, the Neonatologist called me at work and said that Joseph’s blood work was off and that he would not be discharged on Monday. She wanted to keep him another week for observation. She wasn’t really sure what was going on but thought he might just have a stomach bug of some sort.
As always, my husband and I went straight to the hospital to spend time with Joseph. We could tell he didn’t feel well but he looked like Joseph. We said good night to our boy and headed home for what we hoped would be a relaxing weekend spending time with Joseph at the hospital.
The next morning, I got a call from the Neonatologist at 9:00 am saying that when she went in to do rounds, Joseph was gray and bloated and that she would be putting him on a ventilator. What?! When had just been slated to bring our boy home two days later and he is now on a ventilator?! My husband and I quickly got ready and headed to the hospital.
When we got to the hospital, Joseph was back on the critical side of the NICU. He didn’t look like the child we had just said good night to 12 hours earlier. He was an odd gray color, was on a ventilator, and was so bloated. His dark sunken eyes stared into mine as to say, “What is happening to me?”
In questioning the nurses and doctors about how this could have set in so quickly from the previous night, his night shift nurse checked on Joseph with the day shift nurse a little before 7 am. He looked perfectly fine. When the Neonatologist rounded on him two hours later, he was gray, bloated, and swollen.
The next few hours were a blur as we called our families to come be with us. Joseph was slowly requiring more and more ventilator support. His g-tube was being used as a drainage port rather than a feeding port. It was sometime mid-afternoon the word NEC was first mentioned.
I remember asking how this could be possible – he was over a month past his gestational age. The doctors had no answers. The Neonatologist had been in this NICU for over 30 years and had never seen a baby this old have NEC. Everyone was dumbfounded.
The hours slowly ticked by with Joseph slowly getting worse and worse. At some point during the early evening hours, I remember saying to my husband that we had already buried one child and we weren’t burying another.
The surgeon came by late into the evening and just sat by Joseph’s bedside. He wasn’t sure what he was going to do. Did he operate then or did he wait? Or, if he waited, would it be too late? My husband and I spent a lot of time talking to the surgeon and asking lots of questions. This surgeon is ranked as one of the top pediatric surgeons in our city and when he didn’t have answers, I knew we were facing a very possible grim outcome.
At one point in the conversation, the surgeon said to me that if they were able to do surgery and if there was enough salvageable intestine, Joseph would die by the age of two waiting on a liver transplant. If there was enough salvageable intestine, Joseph would not be able to eat and be completely dependent on TPN and lipids for nutrition. It would ultimately
destroy his liver. At this point, all x-rays were pointing in the direction of little to no “good” intestine. I remember looking at the surgeon and saying, “We will cross that bridge when we get there.” I refused to believe my child was going to die.
Late into the night, we decided to head home for a few hours sleep. The surgeon wasn’t going to operate unless something went even more wrong. My husband and I tried to sleep but it was impossible. We were terrified we were going to lose Joseph the next day.
I remember walking into the NICU that Sunday morning – the day before we were originally supposed to bring Joseph home. The surgeon was in his scrubs staring at x-rays. He had his left hand on his hip and his right hand held a cup of coffee. He saw us and said he was going to operate soon. Joseph’s blood work was stable for now but his fear is that he would crash soon. He didn’t want to miss the window of opportunity for surgery. He didn’t know what he would find. All he could do was open his intestinal cavity and find out.
The surgery transport team came for Joseph. We didn’t know if we needed to say our goodbyes to Joseph or if we would see him again. Our families came and spoke to Joseph. My husband and I followed Joseph in the transport as our families lined the hallways. There was not a dry eye. We followed him to the operating room where we were forced to say our goodbyes to Joseph. We didn’t know if we would see him alive again.
The minutes ticked by like hours. We had no idea how long this surgery would take. After what seemed like an eternity, a nurse came to get us. The surgeon wanted to see us. We opened the door and he was standing in the hall. My stomach was in knots.
He motioned us to an empty NICU room and sat down. A nurse followed to take notes. He turned behind him to grab a sheet of paper to write on. The irony of the paper he grabbed – it was our “going home checklist” that had been hanging above Joseph’s bed just the night before.
He had good news and bad news. There was some salvageable intestine but there wasn’t much. A person is born with hundreds of centimeters of intestine. The minimum a person needs to live a remotely decent life is 35 centimeters. Joseph had 41 centimeters of “good” intestine. He had 28 centimeters connected to his stomach and 13 centimeters above his colon. Everything else was gangrenous and unsalvageable. I learned in that moment how important the ileocecal valve is – he was able to save Joseph’s.
The surgeon looked at us and said, “I’ve only known you for a few hours but I know that you are strong people. If you wanted to make the decision to close Joseph up and let him go, I respect that. He is going to have a long, hard road ahead of him. However, if you want to give him a chance, let’s do it.”
To us, there was no option but to give him a chance. We had already lost one child and we for sure weren’t going to lose another. The surgeon headed back to the operating room to complete the surgery. Joseph would have two stomas until his intestines healed. He would also have an ostomy bag until his intestine could be reconnected.
At that moment, it hit me like a rock that we were in the NICU indefinitely. Just days before, we were planning our son’s homecoming. Now, we were thrown back into NICU life for who knew how long. We know had to prepare ourselves to bring home a child who would have a port for TPN and lipids, a child who would barely be able to digest food, and a child who would live a very hard life.
My husband and I had hardly missed any work during Joseph’s NICU stay because we wanted to save all of our days for when he came home. We took several days off work that week to just regroup and mourn the idea that Joseph was not coming home anytime soon.
Joseph healed remarkably well from surgery. We had been told it would be at least two months before Joseph’s intestines would be healed well enough for surgery and then another two months or so before he would be ready to come home.
Somehow, by a miracle from above, Joseph’s intestines were healed well enough for surgery to reconnect them just four weeks later. We were in shock when the surgeon came in one afternoon during our visit and said Joseph would be having surgery that week. All of the sudden, the light at the end of the tunnel seemed to reappear – even if it was dim.
As with the Necrotizing Enterocolitis surgery, Joseph healed remarkably well from his intestine reconnect. The doctors started running continuous feeds through his g-tube very slowly just a few days after surgery. As his feeds increased, his TPN and lipids subsequently decreased. All miracles in and of itself. His body was adjusting better than anyone ever expected.
Two weeks after surgery, Joseph was moved out of the NICU to the GI floor in the hospital. He was the oldest baby in the NICU at the time and the doctors all agreed he was doing well enough to move to a regular hospital floor. We were ecstatic (although we terribly missed our NICU family!).
I assumed this would be our home for the next several months. Every day, the GI doctor would slowly increase Joseph’s continuous feeds while decreasing his TPN and lipids. I knew that every day this happened, it was one day closer to going home and one day less of liver damage.
Two weeks after being moved to the regular floor, the GI doctor set a discharge date. We were in shock. We expected to spend our entire summer in the hospital. A plan was set to have Joseph on full continuous feeds when he went home. The doctor wanted to leave his port in place “just in case he needed it after he came home.” TPN and lipids were stopped
several days before discharge and his port was capped. Arrangements were made that a nurse would stop by our house weekly to flush the port and check the placement.
Over the next several days, Joseph did remarkably well with his feeds. So much so, that the day before discharge, the surgery team removed Joseph’s port at his bedside. It was an excruciating process to watch but when it was all said and done, Joseph was going home with a port – only a g-tube.
Joseph is now three years old. He is in the extremely small percentage of children who have Short Bowel Syndrome (as a result of NEC and having 41 cm of intestine) and were off TPN and lipids before the age of one – he didn’t even come home on them. Most children who had NEC and are Short Bowel spend years on TPN and lipids and many of them require a liver transplant as a result.
He still has his g-tube and will for several more years. He receives continuous feeds all through the night and during naptime. During the day, he eats like a “regular kid.” What has complicated matters is that around the age of two, we learned that Joseph has major food allergies to peanuts, milk, eggs, and soy. Fortunately, the formula he was already on for Short Bowel kids also works with all of his food allergies.
For us, it is completely normal to have a child with a g-tube. We know no different. We forget that all parents don’t mix a bag of formula each night, connect an extension to a g-tube, turn on a feeding pump, and feed their child all night. It is our normal. When I am asked, “How do you handle having a child with a feeding tube?” my response is always, “How did you feed your child a bottle?” Before NEC, Joseph took a bottle but that didn’t last long. In theory, the completely skipped the bottle.
We are fully aware that Joseph’s experience with NEC is unusual in many ways. First, he survived. Many do not. Second, he is not on TPN and lipids. Third, he is doing amazingly well. He has never been labeled “failure to thrive” as many with Short Bowel Syndrome are. He is a growing, healthy, active boy.
We do have to be careful that Joseph does not get a stomach virus. They cause havoc on his body. Almost every stomach bug he has had has landed him in the hospital – one time in the PICU. Because of his lack of small intestines, his body just does not handle a stomach virus well.
We do deal with bouts of “dumping” where his body just does not digest food well. We have learned how to cope with these times. Fortunately, they happen much less frequently now.
As with any diagnoses, we take it a day at a time. After you have buried a child and when you have experienced the surgeon staring you in the face and giving you the option of closing your child and letting him go, you have a completely different perspective on life.
We wouldn’t have it any other way.