Photo and article received from Anne Iversen, mom to Addalyn. Pictured are (left to right) siblings Deacon, Addy, Jordyn and Crayton.
Just a little over five years ago, while living in Wyoming, my husband Cade and I found out that not only were we having twins, but also that I was finally getting my girls! We already had two boys: Deacon, who was three, and Crayton, who was two. Our twins were due in July of 2010.
During a routine ultrasound, our doctor found something that caused some concern, so he referred us to a perinatalogist. After a very long, detailed ultrasound at the perinatalogist’s office, we were informed that Twin A had Hydrocephalus. We were in total shock; we had never heard of Hydrocephalus before! From what the doctors could see, Twin A was going to need a shunt put in shortly after delivery.
Since there is no NICU anywhere close to where we lived in Wyoming, the doctors suggested we plan on delivering somewhere with not only a NICU but also with a pediatric neurosurgeon. We packed up and headed back home to Iowa. My beautiful babies were born on June 21, 2010: Addalyn Drew and Jordyn Rose.
In addition to Addy’s Hydrocephalus, she was also born with a cleft palette. Addalyn’s Hydrocephalus was very closely watched by the doctors and neurosurgeon. Her shunt put in on July 16. I think the worst part was seeing them have to put her on a ventilator before surgery. It was just standard procedure, but still heartbreaking. Exactly one week after surgery, she was discharged from the NICU weighing 5 pounds and 8 ounces. We thought the worst was over.
However, on the morning of August 11, we rushed Addy to Children’s Hospital in Omaha. When we got to the ER, they drew some blood and decided to do a spinal tap to check for infection. We knew that one of the biggest problems with shunts is infection, but she hadn’t shown any signs of shunt malfunction or infection yet.
After doing the spinal tap, doctors and nurses from the NICU were in the ER rushing her up to the NICU. We really had no idea what was going on other than they assumed she had some type of infection. Once we got upstairs, everything just became a whirlwind. All of the people in the room were running around taking care of Addalyn. We were pushed out of her room so they could make more room for people who were helping her. It was definitely a terrifying moment, as the doctor told us she was extremely sick and that, at this point, the infection was life-threatening.
That first night she had two blood transfusions; started three antibiotics by IV; and, got a breathing tube put in. She was breathing on her own, but was just struggling. The doctors felt that getting her on a ventilator would help her fight the infection easier.
By the second day, we knew that the infection was bacterial, not viral. Most kids are immunized against it, but being so little and having a compromised immune system from surgery, Addalyn’s immune system just wasn’t able to fight it off. We met with her neurosurgeon and he pulled out the tail end of the tube from the shunt that drains to her stomach. This way her excess spinal fluid, which was filled with this bacteria, drained outside of her body instead of into her stomach.
This was supposed to help keep the infection from spreading throughout her entire body. Unfortunately, things went downhill from there. By Friday afternoon, she started having seizures. By that night, she had a partially collapsed lung and needed more help with her breathing. Her breathing was getting worse and her lung secretions were testing positive for bacteria. It seemed like things were only getting worse even though the doctors were telling us that she was in a much better state than when she was admitted.
She was stable, but she was still in critical condition. We spent five weeks and two days at Children’s Hospital in Omaha. Her original shunt was removed; and shortly before she was discharged, a new shunt was put into place.
When she was just over a year, we again went back to Children’s Hospital to have her palette repaired, tubes put into her ears and for an MRI. We saw the results of her MRI when we had an appointment with her neurologist. She had one spot in her brain where it hadn’t developed completely “normal.” Her neurologist thought that at some point in time, this spot didn’t get quite enough oxygen to develop, almost like a stroke. This spot is right where her brain processes vision. He was extremely impressed with how well she could see, and that this spot had not caused any problems with her vision. He said that had this happened to any grown adults, they would be blind. But because it happened at such a very young age, another part of her brain just took over the job of processing vision. He was so impressed with her development and how far she has come!
We received services through the AEA for over two years. Staci Gallup was our teacher and service coordinator. She and Jen Mars, an early childhood nurse, came to our home for the first visit and learned more about Addy’s health and history. Staci then contacted Jen Kaskey, Addy’s physical therapist. Jen and Staci came to our home to team with us regarding Addy’s development; to monitor that she continued to progress in all areas of her development, paying close attention to her gross motor progress; and gave us ideas about how to get her to continue to make progress. They answered any questions that we had, listened, gave suggestions regarding health, speech, sleeping, preschool, and whatever other questions we had. Since we have three other children, including Addy’s twin sister, having the services provided at our home was a life-saver. When Addy turned three, we stopped receiving services. It was not only because she was turning three, but she was no longer in need of the services.
She is now four and a half years old and is a typical preschooler. She attends preschool every day and rides the bus every morning after school. She is a normal, crazy, energy-filled little girl.
I once told her, “Addy you are my little miracle.” She responded, “I a miracle!”
Original post: http://www.nwaea.k12.ia.us/en/about/publications/connections/?action=viewArticle&articleID=21632&issueID=4393&newsletterID=94