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“She is just the happiest kid,” said Jeff Nelson of his daughter Angelina. Looking at her, you wouldn’t have imagined that this little girl was born weighing one pound five ounces and just eleven inches long. Her spirit and love of life can be seen through her eyes and smile. She is a miracle.
In February of 2015, Tish and Jeff Nelson found out they were expecting again. In May, they found out the baby would be a girl. “She was my healthiest pregnancy yet,” Tish said. The whole family was on high hopes that this one would be different. The family had suffered miscarriages in the past, but this time, things looked great.
During a visit with Tish’s family in Peoria, the Nelson’s had a night out for bowling. That night they decided to just head home in the morning and around 3:00 a.m., Tish knew something was wrong.
“We went to St. Francis and they determined that I was in pre-term labor and they didn’t know why,” she said.
The next twelve hours was spent trying to stop the labor. Magnesium and other drugs were given, but they were not successful. “They told me that this wasn’t going to stop and she was on her way,” Tish told us.
Given her medical history, the baby had to be born through a c-section.
Once in the operating room, the doctors began to perform the surgery to get the baby out safely. They worked on the Nelson’s baby and Jeff stayed by his daughter’s side. “The only reason I knew what was going on was because he came back in from the doorway and I could see his face,” Tish said. “We had a whole conversation without saying a word. He had this glow of joy and he just somehow communicated that she was alive and she had a chance. Things were not over.”
Angelina Nelson was born weighing 479 grams, which is a little over one pound. From her head to her butt, she was eleven inches long. For a perspective, that’s about from the middle finger to the end of the wrist. Her head was as small as a golf ball.
“The nurse was holding her to her chest and I couldn’t see her because she was so small,” Jeff said.
The doctors began to intubate her because she couldn’t breathe on her own. Once the intubation was successful, her oxygen and other levels began to rise. “I just kept saying out loud, ‘C’mon baby, breathe, breathe’ and she did,” Jeff told us.
Though things were stable at the time, with a micro-preemie, things can change in an instant. The couple had many questions like ‘does she have a chance? ‘If she does, what is it going to look like?’
“They were specifically and purposely not forthcoming with a lot of information,” Jeff said. “We’ve since found out that there is no way to know how a premature baby will turn out and what will happen.”
In total, Angelina was in the hospital for 161 days, which is five and a half months. Of the five months, she was intubated for three months, two weeks and two days. In that time, she went from 479 grams to 448 grams, bringing her to under one pound.
Feeding such a small child was done using intravenous feeding, along with Total Parenteral Nutrition or TPN bags. The TPN way of feeding is getting nutrients in the body through the veins. Angelina was fed through the bags for several weeks, changing them every six hours. At this time, she was able to be fed through a feeding tube. After the feeding tube, it was time to try a bottle for the first time.
“Everything she needed to do was a fight,” Jeff told us. “Everything she needed to do was her own way. Everything took forever, except taking a bottle. The nurse said this probably won’t work and it will probably take some time, but she took right to it.”
Being so small and connected to a number of tubes to help her breathe, every day was fight to keep her airway clean and find the right balance and the right amount of oxygen. “When you have a foreign object in your airway, you want to do what we would all want to do. You want to cough,” Jeff said.
Angelina’s lungs were producing extra mucus so the everyday battle was to keep her lungs clear since she couldn’t cough. This complicated keeping her oxygen stats where they needed to be. Daily x-rays were taken for a collapsed lung, which happened three times.
Another hurdle to overcome was an upcoming heart surgery. When babies are born that early, they have what is called a Patent Ductus Arteriosus or PDA issue. In the heart, there’s a vessel or a vein between the two main arteries which babies need when they are in the uterus. When babies are born and take that first big gasp or cry, this closes off naturally. Not having that reflex, this caused a heart murmur. On July 13, 2015, surgeons put a titanium clamp to shut it.
“After they did it, typical post surgery complications was a collapsed lung. They had to put in a chest tube,” Jeff said.
The entire time in NICU was spent staying ahead of possible infections. Being hooked up to a breathing tube, picc line and the IV brought three chances for infection. “They were very safe, very sterile, but there’s still that chance,” Jeff said.
One thing the parents and staff were also dreading was brain bleeds. The vast majority of premature babies have brain bleeds, something their brains do not respond well to. Again, Angelina fought those off. “They periodically checked for that. They are unfortunately common, but she never had one,” Tish said. “It was nothing short of miraculous. That absolutely was God.”
As Angelina began to grow, she became more aware of all the tubes in her body. As the nurses were cleaning the tubes, her airway was knicked, causing some bleeding, which complicated things a bit. “They’re so tiny, there’s no margin of error. With most humans, there’s a little margin. With micro’s, there isn’t. That was a scary set back,” Tish said. Of the five extubation attempts, Angelina did three of those herself. “She was getting so handsy,” Jeff said. “She wanted it out, but she couldn’t breathe.”
While the Nelson’s were in Peoria, the community of Chrisman heard of the news and set out to help. Nelson’s co-worker Jen Lorton set up a go fund me account to help the family. “I had never heard of it before. I didn’t know it existed. She set that up and it was tremendously helpful,” said Tish. The account was set up to help with the everyday expenses. The Nelson’s stayed at ‘Family House’ in Peoria. At the time of their stay, the fees were between $15 to $30 per day. “When it becomes a month, that starts to get really expensive,” Jeff said.
The local ministerial alliance had taken up a collection and someone had went to the bank and opened an account. “I’ll never forget. I took the money from the go fund me account and I told them I wanted to deposit it (in my account) and they asked which account,” Jeff said. “I told them I only had one and they said no, you have a donation account. They told me the local churches had opened an account and put money in there. I’m not a crier, but I think I had something in my eye that day.”
Donations didn’t stop there. Nelson’s band students held a bake sale to raise money to help with expenses. “The community really came together. They rallied,” Tish said. The ability for the family to be there made all the difference. With Jeff being an early riser, he was there for morning rounds and was part of the discussion for that day’s plan. “I was there as much during the day,” Tish said. “We kind of took shifts. We had one baby to be an expert on. We knew the tiniest details, we could just rattle off.”
In addition to the parents knowing all about Angelina’s details, the older girls, Laura and Emma knew just as much. Emma grasped the medical side of things and understood it. “I remember the nurses commenting that my daughter had a better understanding of the medical equipment than the parents,” Tish said. Laura earned the nickname ‘Mommy number two’.
An example of the importance of knowing details was Angelina had quite a bit of edema or fluid in her lungs. The doctors gave her an extra dose of lasixs. Later in the day, she had a 95 gram diaper, which for a baby that small is huge.
“She was maybe two pounds, so that was a lot,” Tish said.
The next morning, Angelina was weighed and lost 100 grams of weight. The staff that day immediately thought it was a sign of infection and set up labs.
“I happened to say, I don’t know if it matters, but she had a ninety-five gram diaper from her lasixs yesterday,” Tish told us.
After looking up her chart from the day before, the nurses were relived and just let Angelina rest. “Babies that tiny aren’t able to produce enough blood. When you start drawing blood a lot, they can’t replenish that, so they have to get transfusions,” Tish said.
A total of five transfusions had to be done during her stay. A procedure that is very risky and scary as well. But thanks to being there, a possible transfusion was avoided. “That meant she didn’t lose blood that day because I was there. And I was there because the community supported us and all those donations allowed us to stay in Peoria as much as possible,” Tish said.
After 161 days in the NICU, Angelina was discharged and able to go home. At the time of discharge, she was on oxygen full time and on six different medicines. During the time she was in NICU, both Jeff and Tish were part of the team, but it was still stressful on them. “After 161 days, that’s when it got real hard,” Jeff said. “Over a year, we traded nights. One night, I was up all night, then I would go to work, come home and pass out because it was her night. We got used to it.”
While at home, Angelina was on an oxygen and pulse ox monitor that would have the parents up every time an alarm went off. “Your stress level just stays up there and it does not go down,” Tish said. Angelina didn’t have many health scares during her time at home. During one of Jeff’s nights, he noticed that she was making a sound when she was breathing and it wasn’t getting better with the first two medicines. “When it’s two or three o’clock in the morning and you’re reaching for that medicine in the cabinet, you’re in panic mode,” Jeff said.
Another night, Angelina was constantly throwing up, bringing up the worry of dehydration. At this time, she was six months old, but the size of a newborn. “We didn’t come home with a six month old baby, we came home with newborn with health problems,” Tish said.
Angelina started to turn a corner and was taken off of her oxygen in the daytime. The second year home, she stayed on oxygen over night, then was taken off the next summer. Her medicine had changed and she was still on her nebulizers, but something was still off. Her trachea was the size of a coffee stirrer.
The doctor used the analogy of putting a straw in your mouth and to do all of your breathing through that straw with your nose plugged. You’ll get oxygen and you’ll stay alive, but you’re not thriving.
In 2017, the pulmonologist sent a referral to Lurie Children’s Hospital in Chicago based on the concern of needing surgery on her trachea. In August of 2017, the family met with the pulmonologist and the otolaryngologist. After many tests, it was determined that surgery would have to happen to reconstruct her airway. This surgery is called larynotracheal reconstruction or LTR. They also discovered her adenoids were huge and in the way.
In October of 2017, a surgery to remove the adenoids was performed. Every month for six months, the family was in Chicago, staying at the Ronald McDonald House. In November, a sleep study was done, which indicated a huge difference. “It gave me the hope that they wouldn’t have to do the big surgery, but it was not solving the problem,” Tish said. “At one point they went in and it was smaller,” Jeff said.
On June 11, 2018, the LTR surgery was scheduled. The surgery would be done by taking cartilage from between two ribs and use it to create two half circles. They cut the trachea posterior and anterior, then stitched the cartilage in place.
“You took a coffee stirrer and made it into a straw,” Tish said. “If the surgery is successful, the graphs become confused as to where they are in the body and grows along with her.”
Presently, the surgery has been successful. Every year, endoscopies are performed and Angelina has shown tremendous progress. It took her from a 3.0 trachea to a 5.0. The last visit, it had progress to a 5.5.
“It’s proof that it’s growing with her,” Jeff told us. “ The graphs are growing the way they should. It’s amazing, but it came at such a terrible cost.”
The surgery took a total of nine and a half hours with almost a month of recovery. The recovery was so long because Angelina would be in a medically induced coma. An adult in this procedure, they would tell them not to move. The sedation medicines keep the child from harming themselves, but they can cause addiction and cause withdraw.
“We would use medicine one for awhile, then when we came off of that, we would go to medicine two to keep her from having withdraw,” Jeff said. This is called a pharmaceutically managed addiction that is managed by experts trying to mitigate all of the complications from the addiction.
Angelina’s first extubation attempt in June of 2018 failed because of the addiction and her body could not breathe on its own. “All she needed to do was cough,” Jeff said. The doctors used what is called a ‘cough machine’ to help clear out her lungs. “They put her on that machine and she crashed,” Jeff said.
The entire floor’s doctors and nurses rushed into the room to revive Angelina. The doctor was on the bed, straddling her, trying to get her to breathe. With things looking grim, the hospital chaplain was sent for. “That’s when you start to freak out because they only send for the chaplain when things are bad. In the NICU, he was never sent for, he just visited,” Tish said.
Jeff remained in the room with Angelina, by her bedside, praying for her to be alright. Tish collapsed in the hallway. Nurses were crying, not knowing what was going to happen.
Finally, Angelina’s heartbeat came back and her stats began to rise. They did an emergency re-intibation to get her stable and her stats back up.
The doctor who brought her back was the Director of PICU. “He came out of that room and was crying,” Tish said. “He squatted down to me and took my hands and said ‘she’s ok. Something bad could’ve happened, but it didn’t and she’s gonna be ok now.”
The hospital chaplain stayed with Angelina and the family for a half hour. The doctors learned about who Angelina was as an individual and changed protocol for her. Angelina was on the mend, but two of the meds that had been pulled back caused her to thrash to the point where it was beginning to hinder her recovery.
With the thrashing an issue, Jeff and Tish would take turns just lightly hugging her, keeping her still. “Our job was to sit beside her bed and hold her feet. If she pulled up her legs, it would drive up the feeding tube,” Jeff said.
Tish figured out a way to hold Angelina like she was praying, keeping her calm. “You’re putting pressure around her, where she could move, but not to the point she hurts herself. The nurses would hold her head. We talked soothing, just to reassure her,” Tish said.
Angelina’s body was susceptible to addiction, prolonging her stay.
On June 30, 2018, she had a successful extubation attempt. “She was out of it, but breathing on her own,” Tish said.
From June 30th to July 12th, the medicine changed and it was all about stepping down off of the pain medication. The addiction drug Methadone became her best friend. “If you want to see a mom cry, tell her that her three year old has to go on Methadone,” Tish said.
Coming off of addiction meant that everything had to be timed perfectly. In a perfect setting, meds would be given at the same time everyday. Sometimes that wasn’t possible, which meant Angelina went through the withdraw symptoms.
“They vomit, they shake. It’s bad, it’s all that you see in those documentaries. That withdraw, they do that,” Tish said.
Once released, Angelina had to continue the stepping down medication. The harsh side of the addiction meant that she had to re-learn everything. “She had to re-learn how to stand, how to walk, hand-eye coordination and feed herself. It was that hard. It did that much damage,” Tish said.
Six months later, Angelina was back at base line. She continues to get speech, physical and occupational therapy in school. “She’s chronologically six, but developmentally she’s four,” Tish said. “She still struggles a bit, but she’s always making progress. It’s at a glacial pace,” Jeff said.
The LTR also left Angelina without a voice. Her vocal chords in addition to having the once tiny airway has scar tissue. Her vocal chords open and shut, but do not rotate. The surgery took her vocal chords farther apart. At one point, it was a possibility that she might not be able to speak.
“We were preparing for her to be non-verbal and started using sign language,” Jeff told us.
Instead of being able to talk, Angelina has the ability to sing. The sounds that she can make matches pitch to her favorite songs. “It’s not a regular voice, but her tone and pitch are perfect,” Tish told us. “She just can’t talk.”
An endoscopy takes place every year to monitor the graphs. There’s potential for scar tissue and granulation, but that can be lasered off. After ten years, when she turns thirteen, the LTR may need tweaked. “If the graph doesn’t grow, she could be stuck with a child airway in what’s becoming an adult body. They would build it to the full adult size and never have to do it again,” Jeff said.
Looking back at Angelina’s life, both Jeff and Tish know they didn’t go through it alone. “Our two older girls are amazing people. Their worlds imploded. The way we describe it is our family had our own personal 9/11,” Tish said.
Emma and Laura were just seven and eleven when Angelina was born.
The Nelson’s tried their best to not steal any time away from their other daughters, but what they didn’t have was mom and dad together. Most children would harbor some type of resentment towards the child who took their parents away, but not the Nelson girls.
“They never have held it against her,” Tish said. “They never have. The older girls are amazing and they get overshadowed a lot. They had to do it while growing up, while going through puberty. It’s too much. They’ve somehow managed it.”