This story is based on my son’s journey in the NICU. I’m a mother of two, and engaged to my children’s father. My children are twenty-three months apart. My two year old is full of excitement and always on top of caring for his little brother, who has multiple health issues. I’m thankful for their dad, Arlondo, who is a great father. Without his help, I don’t know where I would be. While I was pregnant, an ultrasound discovered that my youngest son, Zayden, intestines were not joined together. I was so hurt and didn’t understand how this could happen to my baby. I didn’t realize this journey would get worse.
My son was born premature at 33 weeks. A couple hours after birth, Zayden was taken to surgery to repair his intestines. The procedure was called a duodenojejunal Atresia. This surgery consisted of connecting the small and large intestines together. A replogle tubing was inserted into his nose and went down to his stomach to drain excess contents from the stomach.
Zayden was crying after birth but was intubated for surgery and when the NICU team tried to extubate him after surgery, Zayden was unable to breathe on his own. That’s when we were transferred to The University of Michigan’s Mott Children’s hospital NICU in Ann Arbor, MI from Covenant Healthcare in Saginaw, Michigan. Zayden was transferred by ambulance. The first scope done at the hospital was to check to see if his airway was swollen. The results came back that there was no swelling in the airway and I was filled with joy. An extubation was scheduled for the following day, but it was unsuccessful. Zayden was still working too hard to breathe on his own. The ENT team did a bronchoscopy and stated he had vocal cord paralysis. The next step was having to get a tracheostomy.
I was so confused about this process. I’m a nursing assistant so I was aware of what a tracheostomy was but I only had worked with adults who had them. I was worried about how my baby would look and would he get teased by other children. But I had to be optimistic in this situation. He would at least be able to breathe on his own and possibly not need a ventilator. The tracheostomy surgery took months to get because the surgeon was concerned about Zayden’s poor weight gain. While waiting for this surgery, my son had four blood transfusions. His body had been taking more blood than it was making. Blood gases were done daily to make sure his breathing settings were accurate to the oxygen concentration settings on the ventilator.
Zayden was unable to have feedings until he was three months old because of unsuccessful placements of feeding tubes. It was challenging to place a feeding tube due to scar tissue building up from the intestine surgery that caused a blockage. Total Parenteral Nutrition (TPN) and lipids were the only source of nutrients he could receive for three months of life. My thoughts were all over the place. There was even some days I thought I wouldn’t make it. I cried day and night about my son’s condition but I never lost my faith in God. An intense surgery to place a GJ-tube was done successful after several failed tries. His GJ tube was a special procedure because it was done with a broviac IV due to him being too small for a real GJ tube. Zayden would finally be able to receive breast milk. It was about time he was able to eat. The feedings were continuously and started off at a slow rate.
During a series of multiple extubations, the ENT team noticed one vocal cord was moving. I was happy to know that one of his vocal cords was moving but my baby still couldn’t breathe on his own. Zayden was extubated two to three times a day for a month or more before the surgeon finally decided to do the tracheostomy. The day of surgery was finally here and I didn’t know how to feel. I was happy, yet sad. The surgery was a success and very fast. I was excited I could finally see my son’s face with only one tube, the replogle. After the first tracheostomy change, Zayden was weaned off the ventilator. Everyone was surprised to see how fast he was put on room air. Brighter days were coming; Zayden was gaining weight and improving in therapy.
Numerous upper GI studies were done to track the milk flow in his GJ tube to make sure the milk was getting digested properly. We were looking forward to going home. But then, Zayden started losing weight daily due to changes in feeding. He would receive food directly into his stomach with the NG feeding tube instead of the feeding being given with the GJ tube. It seemed like every time we’d gotten steps ahead we got knocked twenty steps back. Genetics, pediatric surgery, cardiac team and many other teams examined Zayden to see what was causing the weight loss. His electrolytes count were low and was causing the no weight to be gained. Sodium chloride and a pregestimil formula was added to my breastmilk to help with the weight gain. After four months of the replogle being placed, Zayden was finally discharged with no tubes in his face.
Even with these treatments the scar tissue that had built up on the intestines wasn’t healing itself. To treat this, Zayden would need another operation called intestinal obstruction repair to remove the scar tissue that was causing the blockage. The surgery cut out a small part of his intestine. He was hooked up to a chimney which allowed his stomach time to digest food so he wouldn’t vomit with the increase of food entering. Zayden spent his first thanksgiving in the NICU but I was determined to get my son healthy so he could be home before Christmas. Feedings started slow and he had to gradually reach his goal of 28 ml/hour through his feeding tube.
Speech therapy started working with Zayden on his sucking reflex to drink a bottle. He passed the swallowing exam so the milk did not leak into the tracheostomy. The second step was sucking the milk and actually swallowing which was difficult for him. We are still working with him on drinking a bottle so he won’t gain oral aversion. He just had no interest in drinking a bottle. This could be caused by continuous feeds so he never feels the urge to be hungry. Two weeks before we went home, Zayden received a real GJ tube and it was worked superbly. A week later, the tube moved into his stomach making it only a G tube. The human body works by food being entered in the stomach and his body was finally working normally.
Zayden finally reached his goal and was discharged on December 12th, 2016. I was so excited that I would be able to bring my son home after four and a half months in the NICU. Unfortunately, we couldn’t catch a break. During the process of routines for discharge, an ultrasound found that Zayden had an increased amount of fluid on his brain called hydrocephalus. If it wasn’t one thing, it was another. I couldn’t even stomach the thoughts of him having another health complication and staying in the NICU any longer. With two additional ultrasounds and clinic visits with the neurosurgery team, Zayden was able to get discharged. The neuro team would monitor the excess fluid on his brain with scheduled ultrasounds and clinic visits. We came home December 15, 2016 and what a marvelous day it was.
Going to neuro surgery clinic appointments revealed that the fluid on Zayden brain was progressing and causing pressure in his eyes. He would have to receive a shunt to reduce the fluid from his brain. He received the surgery on January 16, 2017 and we were discharged the following day after surgery. Zayden is currently doing well with the shunt. We have been home a month and Zayden is gaining weight and advancing. He will be six months on January 25, 2017 and will be having a six month birthday party. The NICU was our home for four and a half months and I can’t thank them enough for all their services they provided for my son and family. I’m forever thankful and glad my son is getting healthier. My son has been through more than some adults experience in their lifetime. He is truly my miracle baby.
Submitted by LaTashia Webb