The NICU Roller Coaster

Every year 20 million babies are born too soon. My daughter, Mia, was one of them. Today, November 17, is National Premature Awareness Day and in support we’ve teamed up with March Of Dimes to tell Mia’s story and highten the awareness of this growing problem. Since 1981 prematurity has risen 30% and today we spread the word to fight for the babies who shouldn’t have to.

In the early hours of October 29, 2008, Mia Beritt Steele broke into the world fighting with a silent cry. There was no reason why six weeks before that day a blood vessel burst in my uterus causing a placental abruption that morning and the birth of Mia. Mia’s birth story is a frightening one (read Mia’s birth story here if you wish) and one that is still hard to talk about but the lesson that I learned that morning that I would like to convey is to trust your instincts. Even in this day and age some doctors are still unaware of the symptoms of premature labor. I felt no lower back pain or contractions just painful cramping, in my case was confused for the blood clot putting pressure on my uterus. On that cold October morning Mia was born weighing a little over one pound and 16 weeks early.

She was beyond critical and the hospital where she was born was not able to handle such as case. As we said goodbye to our daughter who we were already madly in love with, our hearts broke not knowing if she would make the flight to the Children’s Hospital at Scott & White Hospital in Temple, Texas.

Born at 24 weeks gestation, Mia had a 35% chance of survival a statistic I was well aware of but during my first conversation with Mia’s amazing neonatologist that statistic wasn’t even close. She was not thought to live past the first week. Her lungs were in horrible shape and hardly developed. The ventilator was causing more harm than good and in a desperate attempt to help her breath she was switched to an oscillating ventilator, or high frequency ventilator. This did the trick but her problems were far from over. In the first week she was diagnosed with Pulmonary Interstitial Emphysema, where air sacs in the lungs are damaged causing the air to pass through the lungs instead of being absorbed; bilateral cerebral hemorrhage at a level 2 and 3; and evidence of a PDA (Patent Ductus Arteriosus), a fetal blood vessel near the heart that is supposed to close after birth remains open. She was on all sorts of blood pressure medications and antibiotics. One day, sitting in her room staring at her isolete, I noticed exactly how many machines she was hooked up to and it hit me just how bad she really was. I can still remember the sounds of alarms going off constantly in the midst of the loud pumping sounds of the ventilator filling the room while I waited everyday for her to pull through.

They tell  you your first day in the NICU that your time here will be like riding a roller coaster and it was. A large giant roller coaster with loops, drops, and high hills with heart pounding falls. Just when it seemed she was stabilizing one day, she fell just as fast. In her second week of life I came into her room with alarms going off, a nurse performing resuscitation (a sight I sadly got used to towards the end), and a baby whose belly was three times the size it was before and dark blue. Mia now had Necrotizing Enterocolitis(NEC), an inflammation in the intestinal tract that causes perforations and scar tissue. Emergency surgery was performed to insert a drain in her abdomen to release the fluid that was now filling her abdominal cavity. At this time she was too week to perform extensive surgery to repair her intestines. We just waited and prayed that she hold on and grow strong.

She was such a fighter. You could see it in her. At her third week of life she was starting to become stronger and for the first time Mia opened her eyes. She was 26 weeks at her corrected or gestational age. That next week the doctors started giving her the breast milk that I was working so hard to pump at .1ml an hour. It was the first time I felt like I was helping her and I was elated. Unfortunately, days later the feeds stopped when Mia’s stomach just could not handle it and we knew surgery was inevitable.

At this point you just get used to the roller coaster ride. Everyday you hand the nurse your ticket and fasten your seat belt. Somedays you ride the kiddy coaster and somedays without knowing it your strapped into the scream-your-head off adult ride. I preferred the kiddy coaster but there was never enough tickets for this one. The only thing that I craved that I thought about everyday was holding my baby. I never had before and I could barely touch her in her isolete because she was so sensitive. The day finally came when Mia was six weeks old and her lungs were stable enough to switch to a conventional ventilator. It was one of the best moments of my life and I can only imagine this is what a typical birth felt like when they hand you your baby for the first time. Everyday I looked forward to holing her for that brief ten minutes that she could handle but it was all short lived when she became critical again days later.

There was no more waiting, Mia had to have abdominal surgery to repair the damage NEC had done. The surgery found three perforations in her small intestines and extensive scaring. To repair the damage the surgeon removed a foot of her small intestines, her cecum and appendix. After surgery I met her in her room only to find she was crashing. This time it was serious and she was the worse I had ever seen her. Surrounded by three of Scott and White’s best neonatologists and a team of amazing nurses and respiratory therapists the room was full of tension and I could hardly breath. I watched with amazement as they revived her and I could tell in everyone’s stoic faces that this one was a close one. This was one of the toughest weeks for her and the worst week for me in the NICU. That night instead of driving to the the Ronald McDonald House near the hospital where we were living, I drove 40 miles back home. Once I pulled into the driveway I screamed and hit the steering wheel repeatedly with my fists until they were burning with pain. I found myself crying, really crying for the first time. I had just let everything out under the moonlight in our driveway and it took every ounce of strength to drag myself into the house. The next morning I woke up early and headed back to the hospital to be with my baby and start the ride all over again.

In true Mia fashion she rallied on. I gave her her first bath with the instruction and hand holding of one of my favorite nurses. I was so nervous and afraid I was going to drown her but she stood by my side and made me laugh so hard I forgot I was nervous. That was the best thing about this crew. They were not here just for the baby but for the family as well. It was a wonderful day I still remember but it was overshadowed by Mia’s constant heart rate and oxygen drops. Her lungs actually seemed to be getting worse and in a last ditch effort Mia’s neonatologist began her on a round of steroids. An unthinkable step in the past because it was known to actually worsen her NEC but we had to take a risk.

Life was wonderful and we adjusted to having a new baby at home. We also adjusted to the alarms of the heart monitor and the new precautions we had to take now that we were in our own house. Just when we had our happy little routine down the roller coaster gave us one more ride as the fear that this wasn’t truly over came true. One day after being at home for three weeks Mia began to vomit green fluid. I had seen this before and immediately rushed back to Scott & White. Mia was admitted to the PICU (Pediatric ICU). After another two weeks of contrast studies and tests we found that Mia had scar tissue build up in her intestines from surgery and a slow colon due to NEC. The doctors decided the best action was to just observe her and hope she grows out of it and the scar tissue pass on it’s own. We returned home and with time our prayers were answered again as a year later she seemed to overcome all of her digestive issues.

We just celebrated Mia’s second birthday. She is a happy, healthy and very intelligent little girl that never gives up. Every time I look at her I see a miracle and a fighter. There is not a day that passes that I don’t look back and am thankful to all of her doctors, surgeons, nurses, and respiratory therapists at Scott & White Hospital. They will forever be in our hearts. Our time in the NICU was a wild ride and I don’t wish it on anyone. To see Mia suffer daily broke my heart but to see her rise and become a healthy amazing little girl brings a pride I can’t describe. Sometimes we don’t know why a premature birth happens but what we do know is that prenatal care and a healthy lifestyle can extremely decrease the risk. Please keep those babies who have fought to survive, who are currently fighting, and those who lost the battle today in your thoughts.

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