Meet Emmy Karlan, our February Mighty Bee! Emmy was honored to participate in Hugo’s Hero at a recent Hornet’s game – take a look at this awesome video clip from her special evening with Hugo and the Hornets – thank you Charlotte Hornets for this amazing opportunity!
Let’s start from the beginning, can you tell us how you learned about the pregnancy and your initial reaction?
We had undergone fertility treatment and successfully conceived our first baby. We later lost that son four months into our first pregnancy. We never found out why that occurred. After trying to conceive again for quite some time we were told that we could not conceive. After trying a holistic approach, we conceived again and were elated when we heard the news.
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?
After losing our son at about four months into our first pregnancy, our doctor wanted to step up the visits when we conceived again. On one of those doctor’s visits, about 4 months into the pregnancy we were told that we were on the verge of losing the baby again. My wife was rushed to the hospital where the doctor performed a cerclage in order to keep the baby in the womb. She was diagnosed with an incompetent cervix and was ordered to bedrest for the duration of the pregnancy. As the baby grew, she had to have another cerclage performed as the baby was at risk again. At about 23 weeks the water broke, the doctor removed both cerclages, and vaginal birth occurred. The doctor essentially indicated that the baby likely would not survive, so we went to bed that night believing we had lost another child. In the morning, a nurse checked in on us to see how we were doing. She told us that the baby was still alive but said it was still very touch and go. From that point on our lives were forever changed by our daughter who is the joy of our hearts. We did not even have a name picked out but later named her Emmy Sarah. Sarah was chosen from the story of Sarah and Abraham who were also told that they could not conceive. We give all the glory to God for blessing us with Emmy. She is exactly the sweet little girl that God wanted her to become. This was the beginning of our NICU journey.
Share what you are comfortable with about the NICU experience for your baby.
Emmy was 1 pound 2 ounces when she was born. Her eyes were still fused shut and her skin was transparent revealing a lot of veins and other anatomy which could be seen right through her skin. It was frightening at first but the initial shock wore off, and we became used to it. She spent a total of approximately seven months in the NICU. She spent approximately six months at Bethesda Memorial Hospital where she was born, and was later transferred to Miami Children’s Hospital when she was unable to be weaned off of oxygen. When she was, she received a cardiac catheterization surgery on her heart in order to close a problematic large hole. Soon after the successful surgery, she was weaned off of the oxygen again, and we were able to take her home. It was a roller coaster of emotions daily in the NICU due to all of the testing and intense care due being a micro preemie. The doctors and nurses in the NICU were our heroes everyday by tending to Emmy and addressing her every need. The first hospital was about an hour drive from our home which we drove nearly every day. When she was in Miami the trip became about a two-hour drive which we again drove about every day and stayed in a hotel on the weekends. The care she received was world-class, and we were so thankful and appreciative for her to receive it. They kind of became like a family after a while because of the unique relationship.
What was the biggest challenge that you had to face for Emmy since being home?
Emmy has overcome many of her issues but still is greatly affected in the areas her speech development and social skills. She has made great progress catching up on her developmental goals due to intensive therapies but still requires ongoing speech therapy to help with her language development. We have been very vigilant with her therapies both in school and privately. With the recent diagnosis of Autism, we are able to use our insurance to begin federally mandated ABA therapy shortly. However, speech therapy is not covered by our insurance which is likely the most needed. Although we have insurance, premiums and co-pays are often exorbitant. The challenge is to still be able to access these therapies that are not covered by our insurance, especially speech. We are so thankful to Bee Mighty for assisting us in this area!!
When did you know that Emmy would need extra therapies?
Emmy was diagnosed with multiple issues after birth and ongoing. She had suffered a grade III and grade IV interventricular hemorrhage on her brain due to her prematurity and trauma at birth. She has been diagnosed with Cerebral Palsy, Global Developmental Delay, GERD, Chronic Constipation, Failure to Thrive, Chronic Lung Disease and most recently mild to moderate Autism. The doctors informed us when she was born that she would likely have developmental and physical issues that would need to be addressed. She has overcome most of these issues other than the ones that are developmental in nature.
How did you hear about Bee Mighty?
I actually learned about Bee Mighty by some literature that was available at Brakeman’s Coffee Shop in Matthews. There was some literature at the check-out line with an offering box. I put some cash in the box and took the literature home to read. I later applied for the grant to help with Emmy’s speech therapy.
What does a typical day with Emmy look like now?
Emmy wakes up at about 6 a.m. (zero dark thirty) each week day to go to kindergarten at Hemby Bridge Elementary School. She receives speech therapy on Tuesdays and Thursdays after school but that funding is ending soon. She has a typical routine like most other kids. She goes to the exceptional children’s program where she participates in most of the activities and is able to live a productive healthy life. She loves trying to reading books, watch cartoons, play with ABC mouse, go shopping, eat pasta and pizza, go hiking, play at the park and travel on occasion. She is a typical 6-year-old girl who loves to stay active and have fun. She does have a few behavioral issues that we are going to address with ABA therapy soon. Otherwise, she has really made great progress toward her goals.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
For us it was only survivable with lot of faith and prayer. We are people of a very strong faith, and we were able to lean on that along with support of friends and family. Understand that it is a process, sometimes long and frustrating. I would strongly advise that they be there for the baby as much as possible and hold and talk to the baby if they can. Love the child unconditionally and be supportive of the NICU staff and doctors. There will be ups and downs, but never give up! The child is depending on you love and compassion in order to make it through. Don’t try to focus on why it happened because that will prevent you from being present in the moment each day. Hope for the future, don’t think too much about the past. “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways submit to him and he will make your paths straight.” Proverbs 3:5
Check out Emmy and her family enjoying VIP treatment at the Hornet’s game.
The Hugo’s Little Heroes program, presented by Sprite, helps honor and encourage patients who have had a Neonatal Intensive Care Unit stay and have received therapy or equipment through the help of Bee Mighty.